Skip to content

Toggle service links

You are here

  1. Home
  2. Type of care
  3. End of life

End of life

The following resources examine the caring needs and issues associated with end of life and palliative care.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Experience as an Informal Caregiver and Discussions Regarding Advance Care Planning in Japan

Context: Advance care planning (ACP) is vital for end-of-life care management. Experiences as informal family caregivers might act as a catalyst to promote ACP.; Objectives: We investigated the association between ACP discussions and caregiving experiences.; Methods: A nationwide survey in Japan was conducted in December 2016 using a quota sampling method to select a sample representative of the general Japanese population. The responses of 3167 individuals aged 20-84 years (mean age: 50.9 ± 16.8) were analyzed. The outcome was measured by asking if respondents had ever engaged in ACP discussions. The exposure was measured by asking whether and for how long respondents had experience as informal caregivers for family members. We analyzed informal caregiving experience related to the occurrence of ACP discussions using multivariable logistic regression models that adjusted for possible covariates.; Results: Respondents with informal caregiving experience had significantly higher odds of having ACP discussions than those without caregiving experience (adjusted odds ratio: 1.93, 95% CI = 1.63, 2.29). Stronger effects were identified in younger adults (aged 20-65 years) and those with a higher education level (education duration > 12 years) than in older adults (aged ≥65 years) and those with a lower education level, respectively.; Conclusion: Experiences as informal caregivers for family members may facilitate ACP discussions among Japanese adults, especially younger adults with higher educational attainment. Our findings may help health-care providers screen those at risk for inadequate ACP discussions, and informal caregiving experience should be considered when health-care providers initiate discussions of end-of-life care. 

Access source material through DOI

Gaps in end-of-life care and lack of support for family carers in Poland and Central Eastern Europe

The growth of life expectancy in Central Eastern Europe and increase in the number of older people in that region are the consequences of changes in the 1990s period, connected to transition from the communism into a market economy. Central Eastern Europe is already facing consequences of fast ageing and insufficient development of state health care and social services. Those result in gaps in the provision of end-of-life care and overburden of family caregivers. This essay addresses gaps in end-of-life care, showing the development of hospice-palliative care on one side, and highlighting main problems with long-term care on the other. There is scarce support for informal caregivers and lack of cooperation between health and social care. End-of-life care is over medicalized in hospice-palliative care and hardly existing in long-term care. Dying is more a social than medical event, and as such, it should be cared for by compassionate communities, encouraging cooperation of professionals with family caregivers and society. Unfortunately, to date, there is no adequate cooperation in social dimension of end-of-life care in most of Central Eastern Europe. The social dimension of end-of-life care has to be recognized and empowered with the health promoting palliative care and introduction of compassionate communities in Central Eastern Europe. 

Access source material through DOI

Do family meetings for hospitalised palliative care patients improve outcomes and reduce health care costs? A cluster randomised trial

Background: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications.; Aims: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice.; Desi​gn: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted.; Results: 297 dyads recruited; control ( n  = 153) and intervention ( n  = 144). The intervention group demonstrated significantly lower psychological distress (Diff: -1.68, p  < 0.01) and higher preparedness (Diff: 3.48, p  = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures.; Conclusions: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications.; Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583.

Access source material through DOI

Walking the Walk: support for carers with a loved one at the end of life

When a carer’s loved one is at the end of life, the carer’s needs can often be overlooked despite this being a distressing time. Walking the Walk is an initiative first developed to learn how to better meet the needs of carers in the acute hospital setting; this article describes a pilot adapting it for use in care homes, GP practices and community hospitals. The project has received overwhelmingly positive evaluation responses, with participants reporting a renewed motivation to better support and cater to the needs of carers.

Original source (some source materials require subscription or permission to access)

Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach

Background: Parkinson’s disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. Methods: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson’s Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer’s Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson’s Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI. Results: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r 2 =0.024, P=0.0380), patient health-related quality of life (PDQ-39, r 2 =0.161, P 2 =0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r 2 =0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r 2 =0.088, P Conclusions: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.

Access source material through DOI

A tale of two springs

Palliative care, which is more than just terminal care, is still unknown in most parts of India. This narrative highlights how early integration of palliative medicine can help the patient and their family to make the most of their time together. Besides, excellent clinical acumen is required while looking after the sickest and the most critical patients, proper communication skills, and an ethical and holistic approach enables a good doctor-patient relationship. Good pain relief, symptom control, attention to nursing issues, providing information sensitively to empower patients and families for joint decision making, and advance care planning can help bring about a decent death and bereavement. Healing is brought about not only for the caregivers but also for the healthcare professionals.

Access source material through DOI

Smartphone-Enabled, Telehealth-Based Family Conferences in Palliative Care During the COVID-19 Pandemic: Pilot Observational Study

Background: In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. Objective: We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. Methods: Family conferences comprised three phases designed according to telehealth implementation guidelines-the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: "team talk," "option talk," and "decision talk." The model has been implemented at a national cancer treatment center in Taiwan since February 2020. Results: From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients' mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%). Conclusions: Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.

Access source material through DOI

The relationship between caregivers' perceptions of end-of-life care in long-term care and a good resident death

Objective: Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers' perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers' perceptions of a good resident death.; Method: This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.; Results: Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers' perceptions of a good resident death.; Significance of Results: The findings of this study suggest that the critical role staff in LTC play in supporting caregivers' perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers' perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers' perceptions that residents were at peace when they died.

Access source material through DOI

Rehabilitation for Cancer Patients in Inpatient Hospices/Palliative Care Units and Achievement of a Good Death: Analyses of Combined Data From Nationwide Surveys Among Bereaved Family Members

Context. In end-of-life care, rehabilitation for patients with cancer is considered to be an important means for improving patients' quality of death and dying. Objectives. To determine whether the provision of rehabilitation for patients with cancer in palliative care units is associated with the achievement of a good death. Methods. This study involved a cross-sectional, anonymous, and self-report questionnaire survey of families of patients with cancer who died in palliative care units in Japan. We evaluated the short version of Good Death Inventory (GDI) on a seven-point scale. A logistic regression model was used to calculate the propensity score. Covariates included in this model were survey year, patients' characteristics, and families' characteristics. The associations between rehabilitation and GDI were tested using trend tests after propensity score matching adjustment. Results. Of the 1965 family caregivers who received the questionnaires, available data were obtained from 1008 respondents (51.2%). Among them, 285 (28.2%) cases received rehabilitation in palliative care units. There was no difference in total GDI score between the groups with and without rehabilitation. In exploratory analyses, patients receiving rehabilitation were significantly more likely to feel maintaining hope and pleasure (mean 4.50 [SE 0.10] vs. 4.05 [0.11], respectively; effect size [ES] 0.31; P = 0.003), good relationships with medical staff (mean 5.67 [SE 0.07] vs. 5.43 [0.09], respectively; ES 0.22; P = 0.035), and being respected as an individual (mean 6.08 [SE 0.06] vs. 5.90 [0.07], respectively; ES 0.19; P = 0.049) compared with patients not receiving rehabilitation. Conclusion. Rehabilitation in palliative care units may contribute to several domains of quality of death and dying, particularly maintaining hope and pleasure. Further research is needed to investigate whether palliative rehabilitation contributes to the achievement of a good death. 

Access source material through DOI

The Process of Pain Management in Cancer Patients at Home: Causing the Least Harm - A Grounded Theory Study

Background: Cancer pain management at home is a complicated and multidimensional experience that affects the foundational aspects of patients and their families' lives. Understanding the pain relief process and the outcomes of palliative care at home is essential for designing programs to improve the quality of life of patients and their families. Objective: To explore family caregivers and patients' experiences of pain management at home and develop a substantive theory. Design: The study was carried out using a grounded theory methodology. Setting/Participants: Twenty patients and 32 family caregivers were recruited from Oncology wards and palliative medicine clinics in the hospitals affiliated to Iran University of Medical Sciences using Purposeful and theoretical sampling. Results: The core category in this study was "pain relief with the least harm." Other categories were formed around the core category including "pain assessment, determining the severity of pain, using hierarchical approaches to pain relief, assessing the results of applied approaches, determining the range of effectiveness, and barriers and facilitators of pain relief." The substantive theory emerged from these categories was "Pain management process in cancer patients at home: Causing the least harm" that explains the stages of applying hierarchical approaches to pain relief, family care givers try to make decisions in a way that maximize pain relief and minimize damage to the patient. Along with using a hierarchical pattern, the process is featured with a circular pattern at broader perspective, which reflects dynamism of the process. Conclusion: The inferred categories and theory can expand knowledge and awareness about the stages of pain relief process, the pattern of using pain relief approaches, and the barriers and facilitators of pain relief process at home. Health-care professionals may use these findings to assess the knowledge, skill, capability, problems, and needs of family caregivers and patients and develop supportive and educational programs to improve the efficiency of pain relief process at home and improve the patients' quality of life.

Access source material through DOI

Preferences on the Timing of Initiating Advance Care Planning and Withdrawing Life-Sustaining Treatment between Terminally-Ill Cancer Patients and Their Main Family Caregivers: A Prospective Study

Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan. Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis. Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients' frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress. Conclusion: Patient dyads' preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people's medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia-Pacific region.

Access source material through DOI

Preferences and Experiences of Muslim Patients and Their Families in Muslim-Majority Countries for End-of-Life Care: A Systematic Review and Thematic

Background. Care for people with progressive illness should be person centered and account for their cultural values and spiritual beliefs. There are an estimated 1.7 billion Muslims worldwide, largely living in low-income and middle-income countries. Aims. This study aimed to identify, appraise, and integrate the evidence for the experiences and preferences of Muslim patients and/or families for end-of-life care in Muslim-majority countries. Design. Systematic review. Data sources. PsychINFO, MEDLINE, Embase, Global Health, CINAHL, Cochrane Library and Registry of Clinical Trials, PubMed, Applied Social Sciences Index and Abstracts (ASSIA), Social Services Abstracts, Sociological Abstracts, Social Policy & Practice, and Scopus were searched until December 2018. Handsearching was performed, and gray literature was included. Qualitative studies analyzed using thematic analysis and quantitative component provided triangulation. Results. The initial search yielded n = 5098 articles, of which n = 30 met the inclusion criteria. A total of 5342 participants (4345 patients; 81.3%) were included; 97.6% had advanced cancer. Most (n = 22) studies were quantitative. Three themes and subthemes from qualitative studies were identified using thematic analysis: selflessness (burden to others and caregiver responsibilities), ambivalence (hope and hopelessness), and strong beliefs in Islam (beliefs in death and afterlife and closeness to Allah). Qualitative studies reported triangulation; demonstrating conflicts in diagnosis disclosure and total pain burden experienced by both patients and families. Conclusion. Despite the scarce evidence of relatively low quality, the analysis revealed core themes. To achieve palliative care for all in line with the total pain model, beliefs must be identified and understood in relation to decision-making processes and practices. 

Access source material through DOI

Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan

Background Limited comprehension of the concept of palliative care and misconceptions about it are barriers to meaningful utilisation of palliative care programs. As caregivers play an integral role for patients with terminal illness, it is necessary to assess their perceptions and attitudes towards the palliative care approach. Method A cross-sectional survey was conducted. Data was collected from the Aga Khan Hospital in-patient and out-patient departments and home-based palliative care services. All adult caregivers who met the inclusion criteria and consented, completed a questionnaire till the sample size was reached. Univariate and multivariate multivariable analysis was done and results were reported as crude prevalence's, crude and adjusted prevalence ratios with 95% confidence intervals using Cox-proportional hazard algorithm. Mean difference of knowledge and attitude scores by caregiver variables were assessed using one-way ANOVA. SPSS version 18 was used and a p-value of less than 5% was treated as significant. Results Out of 250 caregivers more than 60% were 40 years or less, majority were males and at least graduates. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had enhanced understanding about palliative care. Individuals under 40 years old, those with an education level of at least grade 10, children or relatives were found to have significantly more enhanced knowledge about palliative care. The majority believed that the patient should be informed about the diagnosis and should be facilitated to carry out routine activities and fulfill their wishes. Conclusion Nearly half of the caregivers had enhanced understanding of the palliative care approach. They showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that palliative care should be offered to everyone suffering from a terminal illness and, secondly, that this approach encompasses not just physical, but also psychological and social needs of the patient and the family. These findings will help inform the establishment of a palliative care program that fills the gaps in comprehension and knowledge of caregivers.

Access source material through DOI

Palliative medicine family conferences and caregiver psychological distress during prolonged mechanical ventilation

Objectives Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers. Methods A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys. Results In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016-2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients' death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: -44.04% and 95% CIs -75.65 to -12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: -0.35% and 95% CI -0.58 to -0.11 on IES and coefficient: -0.22% and 95% CI -0.40 to -0.05 on CES-D) among caregivers following the patients' death. Caregivers' who accepted the concept of palliative care had fewer psychological symptoms after patients' death (coefficient: -3.29% and 95% CI -6.32 to -0.25 on IES and coefficient: -3.22% and 95% CI -5.24 to -1.20 on CES-D). Conclusions Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.

Access source material through DOI

Palliative and End-of-Life Care: More Work is Required

There is currently growing recognition of the complex care needs of patients with life-limiting conditions and their family members, prompting the need to revisit the goals of medicine. This Special Issue reflects a broad research agenda in the field of palliative and end-of-life care. A total of 16 papers of empirical studies and systematic review are included spanning five domains, namely, patient, caregiver, healthcare provider, policy, and methodology. The results generally suggest the merits of palliative care and reveal room for further improvement in palliative care education, manpower, infrastructure, and legal and policy frameworks.

Access source material through DOI

Open communication between caregivers' and terminally ill cancer patients about illness and death: The role of gender - A correlational study

Purpose: Caregivers face severe difficulties in communicating openly with their terminally ill relatives about illness and death. Some studies suggest that females are more likely than males to hold such conversations. We compared level of open communication between male and female spouse-caregivers, and the contribution of personal and situational characteristics to the explanation of open communication level within each gender group. Methods: The study design was correlational. We interviewed 77 spousal-primary caregivers of terminal cancer patients. Participants were recruited over a 10-month period from the home hospice unit of the central region of Israel's largest Health Maintenance Organization. The questionnaire included measures of open communication, along with caregiver's personal and situational characteristics. Results: Female spouses reported higher levels of open communication about illness and death with their loved ones, compared to male spouses. Among males, duration of care and self-efficacy emerged as significant contributors to open communication level. Among females, self-efficacy and ethnic origin were found to be significant explanatory variables. Conclusions: This study demonstrates the important role gender plays in level of open communication between spousal caregivers and terminal cancer patients, concerning their illness and approaching death. Self-efficacy, ethnic origin and duration of care are also significant factors explaining open communication of both male and female caregivers. These factors should be considered by nurses and other healthcare professionals when developing intervention programs to increase the level of open communication between family caregivers and their terminally ill relatives.

Access source material through DOI

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Objectives This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar. Design This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion. Setting All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA. Participants We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations. Results Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves. Conclusions Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.

Access source material through DOI

Intervention to improve quality of sleep of palliative patient carers in the community: protocol for a multicentre randomised controlled trial

Background: Sleep disorders are commonly experienced by community caregivers for persons with cancer, with at least 72% reporting moderate to severe disorders. A consequence of this condition, which is associated with the presence of overload in the caregiver, is the increased risk of clinical depression. The aim of this study is to evaluate the effects of music on the sleep quality achieved by informal caregivers for cancer patients receiving home palliative care. In addition, we will assess the influence of specific variables that could modify these effects, analyse the correlates related to nocturnal wakefulness and consider the diurnal consequences according to the sleep characteristics identified. Methods: This single-blind, multicentre, randomised clinical trial will focus on informal providers of care for cancer patients. Two samples of 40 caregivers will be recruited. The first, intervention, group will receive seven music-based sessions. The control group will be masked with seven sessions of therapeutic education (reinforcing previous sessions). Outcomes will be evaluated using the Pittsburgh Sleep Quality Index, a triaxial accelerometer, EuroQol-5D-5L, the Caregiver Strain Index, the Epworth Sleepiness Scale and the Client Satisfaction Questionnaire. The caregivers' satisfaction with the intervention performed will also be examined. Discussion: This study is expected to extend our understanding of the efficacy of music therapy in enhancing the sleep quality of caregivers for patients receiving home palliative care. To our knowledge, no reliable scientific investigations of this subject have previously been undertaken. Music is believed to benefit certain aspects of sleep, but this has yet to be proven and, according to a Cochrane review, high-quality research in this field is necessary. One of the main strengths of our study, which heightens the quality of the randomised clinical trial design, is the objective assessment of physical activity by accelerometry and the use of both objective and subjective measures of sleep in caregivers. Music therapy for the caregivers addressed in this study is complementary, readily applicable, provokes no harmful side effects and may produce significant benefits.

Access source material through DOI

Impact on place of death in cancer patients: a causal exploration in southern Switzerland

Background: Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods: A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results: Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family's preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient's preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion: Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family's decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.

Access source material through DOI

Family carer support in home and hospital: a cross-sectional survey of specialised palliative care

Objectives To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased. Methods A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted. Results Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare. Conclusions Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.

Access source material through DOI

Families' Experiences of End-of-Life Care at Home for Iranian Older Adults: A Qualitative Study

Aim: While the care of dying elderly patients at home is very complex and ambiguous, it has not been studied in Iran so far. Hence, this study aimed to explore the experience of a representative sample of the Iranian family caregivers from the end-of-life (EOL) care for their elderly relatives. Methods: The present study was conducted using a qualitative content analysis method. Twelve family caregivers caring for the chronically ill dying elderly were selected using purposeful sampling. The purposive sampling method was applied with an extreme variation in sampling, and data gathering was pursued until data saturation was achieved. Semi-structured interviews were utilized for data collection. Interviews were recorded and instantly transcribed verbatim. Inductive content analysis was used to analyze the data. Results: Four core themes and 13 subthemes emerged from the experiences of family's caregiver as fallow: (1) Committed to care: This is related to encounter with the end of stage disease of the relative, accepting the care role and priority of care, (2) challenges of Care: Caregivers, despite their efforts, provided ineffective care, so they sought to empower themselves and at the same time provide compassionate care, (3) the crisis of care including the complexity of care, fear, and wandering, helplessness, devastating tension, and vacuum of supporting, and (4) conditions after death that family members involved with a sense of loss and Tension control. Conclusion: When families had to take care of their elderly patients at home, although their wish to give the best care, they are completely powerless to provide care, and in an atmosphere of the vacuum of supporting, they encounter severe challenges and crisis. It is vital that palliative care centers in the society are arranged to care for EOL elderly with comprehensive insurance services.

Access source material through DOI

Experiences of family caregivers of patients with terminal disease and the quality of end-of-life care received: a mixed methods study

The aim of this study was to analyze the perceptions and experiences of relatives of patients dying from a terminal disease with regard to the care they received during the dying process, considering the oncological or non-oncological nature of the terminal disease, and the place where care was provided (at home, emergency department, hospital room, or palliative care unit). For this purpose, we conducted a mixed-methods observational study in which two studies were triangulated, one qualitative using semi-structured interviews ( n  = 30) and the other quantitative, using questionnaires ( n  = 129). The results showed that the perception of relatives on the quality of care was highly positive in the quantitative evaluation but more critical and negative in the qualitative interview. Experience of the support received and palliative measures was more positive for patients attended in hospital in the case of oncological patients but more positive for those attended at home in the case of non-oncological patients. 

Access source material through DOI

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life.; Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions.; Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions.; Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context.; Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers' roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living.; Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

Access source material through DOI

Effectiveness of palliative care consultation service on caregiver burden over time between terminally ill cancer and non-cancer family caregivers

Purpose: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time.; Methods: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC.; Results: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (β = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (β = 1.14, p = 0.013).; Conclusions: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.

Access source material through DOI

Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role

Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams. Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems. Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial–spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.

Access source material through DOI

Consistency in End-of-Life Care Preferences Between Hospitalized Elderly Patients and Their Primary Family Caregivers

Purpose: This study explored the consistency between preferences for end-of-life care for elderly hospitalized patients and their primary caregivers and predictors of consistency. Patients and Methods: This cross-sectional correlational study recruited 100 dyads of elderly hospitalized patients and their primary caregivers from a medical center in Central Taiwan. A structural questionnaire about preferences for seven end-of-life medical treatment options involved cardiopulmonary resuscitation, intravenous therapy, nasogastric tube feeding, intensive care unit, blood transfusion, tracheotomy, and hemodialysis. Results: The consistency was 42.28% for preferences of end-of-life medical care between patients and caregivers. The Kappa values for seven life-sustaining medical treatments ranged from 0.001 to 0.155. Logistic regression showed that the predictors of consistency for preferences of treatment were: a patient with a signed living will (odds ratio [OR] = 6.20, p<0.01) and a male family caregiver (OR= 0.23, p<0.01) for cardiopulmonary resuscitation; a patient who visited relatives in the intensive care unit (OR= 2.94, p< 0.05) and a spouse caregiver (OR= 3.07, p< 0.05) for nasogastric tube feeding; a spouse caregiver (OR=3.12, p<0.05) and a caregiver who visited the intensive care unit (OR= 5.50, p<0.01) for tracheotomy; and a spouse caregiver (OR= 2.76, p<0.05) and a caregiver who visited the intensive care unit (OR= 4.42, p<0.05) for hemodialysis. Conclusion: End-of-life medical treatment preferences were inconsistent between patients and family caregivers, which might be influenced by Asian culture, the nature of the relationship and individual experiences. Implementation of advance care planning that respects the patient's autonomy and preferences about end-of-life care is recommended.

Access source material through DOI

Comparison of Perceptions of Spiritual Care Among Patients With Life-Threatening Cancer, Primary Family Caregivers, and Hospice/Palliative Care Nurses in South Korea

This study aimed to compare perceptions of spiritual care among patients with life-threatening cancer, their primary family caregivers, and hospice/palliative care nurses. Data were collected using both structured and unstructured approaches. Structured questionnaire data were examined using statistical analysis methods, and unstructured data were examined using content analysis to compare the 3 participant groups. The questionnaire revealed that among all 3 groups, spiritual care was commonly perceived to relate to "having the opportunity for internal reflection," "finding meaning," "encouraging hope," and "listening to and being with patients." Content analysis of the unstructured data revealed 5 themes: "Caring with sincerity," "Strengthening spiritual resources," "Alleviating physical pain and discomfort" (among patients and primary family caregivers only), "Improving spiritual care service," and "Multifaceted cooperation" (among hospice/palliative care nurses only). Our findings suggest that for patients with life-threatening illnesses such as terminal cancer, spiritual care should not be limited to religious practice but should also satisfy inner existential needs, for example, by encouraging hope, providing empathy, and helping patients find meaning in their circumstances.

Access source material through DOI

A cluster randomized controlled trial on a multifaceted implementation strategy to promote integrated palliative care in COPD: study protocol of the COMPASSION study

Background: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. Methods: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. Discussion: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care.

Access source material through DOI

Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study

Background: Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia. Methods: This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis. Result: The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden. Conclusion: Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies.

Access source material through DOI

Assessment of burden and coping strategies among caregivers of cancer patients in sub-Saharan Africa

Background: Cancer is a devastating and debilitating chronic disease that affects both patients and family members. Available evidence has confirmed that the care of chronically ill relatives by family members can be very challenging. This is because caregiving of cancer patients often presents a high level of burden on the caregivers. Consequently, this leads to a necessity to adopt coping mechanisms to cushion the effect of the burden experienced during caregiving.; Aim: To determine the burden experienced and coping strategies among caregivers of advanced cancer patients attending University of Calabar Teaching Hospital (UCTH), Cross River State, Nigeria.; Methods: The study adopted a descriptive cross-sectional study design and the study population included informal family caregivers providing services to histologically diagnosed advanced cancer patients receiving treatment at the UCTH at the time of this survey. A researcher-developed structured questionnaire, a 22-item standardized validated Zarit Burden Interview (ZBI) and a modified 17-item Coping Orientation to Problems Experienced (COPE) Inventory were used to collect data from 250 eligible informal caregivers who were selected with regard to caregiver's characteristics, caregivers' level of burden and caregiver's coping strategies, respectively. Data gathered from the respondents were collated, coded and analyzed using Statistical Package for Social Sciences (SPSS version 24.0) software and Predictive Analytical Software (PAS version 19.0). Chi-square was used to test for association between categorical variables at the 0.05 level of significance. The results are presented in tables and charts.; Results: The respondents consisted of more females 132 (62.86%) than males 78 (37.14%).  The majority of respondents (46.2%) were aged between 31-50 years with a mean age of 35.9 ± 18.1 years. The assessment of burden level revealed that 97 caregivers (46.19%) experienced severe burden, 37 (17.62%) experienced trivial or no burden, while 76 (36.2%) perceived moderate burden. The coping strategies used by caregivers to ease the level of burden experienced during caregiving included; acceptance, reprioritization, appreciation, family, positive self-view and empathy. Also, it was documented that there was a strong association between caregivers' level of burden and coping strategies ( P = 0.030). Findings also showed that age ( P = 0.000), sex ( P = 0.000), educational status ( P = 0.000), functional ability ( P = 0.000), duration of care ( P = 0.000), desire to continue caregiving ( P = 0.000) and type of cancer ( P = 0.000) were statistically significantly associated with caregivers' coping strategies.; Conclusion: There is great recognition of the role of informal caregivers in improving the health of their relatives and family members who are chronically ill. It was recommended that support groups in collaboration with health care providers should organize a symposium for informal caregivers on the intricacies of caregiving in chronically ill patients. This would create a platform for experience sharing, information dissemination and health care professional-caregiver interaction to enhance positive caregiving outcomes. 

Access source material through DOI

Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

Access source material through DOI

What Are the Factors Identifying Caregivers Who Need Help in Managing Medications for Palliative Care Patients at Home? A Population Survey

Background: For most people, the last 12 months of life are spent living in the community, with the support of family and friends for a number of caregiving functions. Previous research has found that managing medicines is challenging for caregivers. Currently there is little information describing which caregivers may struggle with tasks associated with managing a loved one's medicines. Aim: The aim of this study was to identify factors that flag caregivers who are likely to experience problems when managing someone else's medications. Setting/Participants: The annual South Australian Health Omnibus Survey provides a face-to-face, cross-sectional, whole-of-population view of health care. Structured interviews, including questions covering palliative care and end-of-life care, were conducted with 14,625 residents in their own homes. Results: Of the 1068 respondents who had provided care for someone who died of a terminal illness in the last five years, 7.4% identified that additional support with medicine management would have been beneficial. In addition, three factors were predictive of the need for additional support in managing medicines: aged <65 years; lower household income; and living in a metropolitan region. Conclusion: The findings of this study provide insights to inform the development of palliative care service models to support informal caregivers in the management of medications for people with a life-limiting illness. 

Access source material through DOI

Validation of two short versions of the Zarit Burden Interview in the palliative care setting: a questionnaire to assess the burden of informal caregivers

Purpose: Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC. Methods: In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer. Results: Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach's α = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers' burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23-.69; p = 0.001). Conclusion: The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.

Access source material through DOI

Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice: Managing Community Care

Purpose Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community. Design/methodology/approach Three focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English. Findings The findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation. Research limitations/implications There is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants. Practical implications The findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India. Originality/value This paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.

Access source material through DOI

Uncertainty Towards the Disease of Family Caregivers of Patients in Palliative Care: A Scoping Review

Objective: To know the development of the scientific evidence on the uncertainty towards the disease of family caregivers of patients in palliative care. Materials and methods: A descriptive scoping review. A search was conducted in the Embase, ScienceDirect, Medline, Academic Search Complete, Scopus databases, during the 2000-2019 period. The following MeSH terms were used: uncertainty, palliative care, end of life, nursing and caregiver. Fifty articles were selected after the criticism process. Results: Five thematic nuclei emerged: characterization of uncertainty in the caregiver, factors influencing uncertainty, resources to manage uncertainty, uncertainty assessment, and therapies and interventions to approach uncertainty. The higher scale of evidence is found in the characterization of uncertainty in the caregiver, and the voids direct the development of Nursing interventions on the uncertainty of the caregivers of individuals in palliative care. Conclusions: Although the factors influencing uncertainty towards the disease of the caregiver are widely explored, the evidence on the interventions that may help to reduce uncertainty towards the disease is still limited. 

Access source material through DOI

Transitional palliative care interventions for older adults with advanced non-malignant diseases and frailty: a systematic review: Managing Community Care

Purpose To identify transitional palliative care (TPC) interventions for older adults with non-malignant chronic diseases and complex conditions. Design/methodology/approach A systematic review of the literature was conducted. CINAHL, Cochrane Library, Embase and Pubmed databases were searched for studies reporting TPC interventions for older adults, published between 2002 and 2019. The Crowe Critical Appraisal Tool was used for quality appraisal. Findings A total of six studies were included. Outcomes related to TPC interventions were grouped into three categories: healthcare system-related outcomes (rehospitalisation, length of stay [LOS] and emergency department [ED] visits), patient-related outcomes and family/carer important outcomes. Overall, TPC interventions were associated with lower readmission rates and LOS, improved quality of life and better decision-making concerning hospice care among families. Outcomes for ED visits were unclear. Research limitations/implications Positive outcomes related to healthcare services (including readmissions and LOS), patients (quality of life) and families (decision-making) were reported. However, the number of studies supporting the evidence were limited. Originality/value Studies examining the effectiveness of existing care models to support transitions for those in need of palliative care are limited. This systematic literature review identified and appraised interventions aimed at improving transitions to palliative care in older adults with advanced non-malignant diseases or frailty.

Access source material through DOI

A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial

Background: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. Methods: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. Discussion: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. Trial Registration: ClinicalTrials.gov NCT03339271 . Registered on 13 November 2017. Protocol version: 11. 

Access source material through DOI

'Take more laxatives was their answer to everything': A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this. 

Access source material through DOI

A systematic review of interventions for family caregivers who care for patients with advanced cancer at home

Objective: To examine the characteristics of interventions to support family caregivers of patients with advanced cancer. Methods: Five databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home. Results: A total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures. Conclusions: Most studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers' physical health. Practice Implications: Given caregivers' needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer. 

Access source material through DOI

Supporting the patients with advanced cancer and their family caregivers: what are their palliative care needs?

Background: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers' burdens can be increased due to the patients' unmet needs and unresolved problems. Additionally, the caregivers' unmet needs may adversely affect their own well-being and the patients' health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs.  Methods: In a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients' and FCs' needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records. Results: The FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had "information" and "practical support" in their top three domains of palliative care needs. The second highest domain of needs was "psychological problems" (16.4 ± 21.5) in patients and "health-care staff" (23.4 ± 26.5) in FCs. The item that had the highest need score in "information" domain for both patients and FCs was "financial support for patients, either from government and/ or private organizations". Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients' KPS scores, patients with lower KPS scores tend to have higher needs. Conclusion: Overall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings. 

Access source material through DOI

Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient's Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient's quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient's quality of life. A convenience sample of 225 patient-caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did ( p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient's quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient's quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient's quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient's quality of life.

Access source material through DOI

The role and value of family therapy for people living with cancer: a rapid review of recent evidence

Purpose of Review: Cancer impacts the whole family and relational system, not just the individual with the diagnosis. The present article identifies and reviews publications in the field of family therapy and cancer since 2019, to describe the theoretical models and techniques applied, and the outcomes achieved.; Recent Findings: A search of databases and grey literature led to the identification of five articles from four studies. Four papers described primary research and one summarized a case example. Papers were published by teams in the USA, Sweden and Iceland. Each article described the benefits of adopting a family therapy approach on outcomes such as family communication, bereavement and decreased carer burden. Four papers described specialist family therapists delivering the interventions, and one used oncology nurses drawing on the theories and techniques of family therapy.; Summary: The rarity of family therapy publications in the past year reflects the individual-level approach to cancer which permeates both medicine and talking therapies. The utility of family therapy could be further surfaced through more large-scale studies which thoroughly describe the unique theoretical basis and techniques, alongside outcomes for multiple people within the family system.

Access source material through DOI

Rituals of Care: Karmic Politics in an Aging Thailand

End-of-life issues are increasingly central to discussions within medical anthropology, the anthropology of political action, and the study of Buddhist philosophy and practice. Felicity Aulino's Rituals of Care speaks directly to these important anthropological and existential conversations. Against the backdrop of global population aging and increased attention to care for the elderly, both personal and professional, Aulino challenges common presumptions about the universal nature of "caring." The way she examines particular sets of emotional and practical ways of being with people, and their specific historical lineages, allows Aulino to show an inseparable link between forms of social organization and forms of care. Unlike most accounts of the quotidian concerns of providing care in a rapidly aging society, Rituals of Care brings attention to corporeal processes. Moving from vivid descriptions of the embodied routines at the heart of home caregiving to depictions of care practices in more general ways-care for one's group, care of the polity-it develops the argument that religious, social, and political structures are embodied, through habituated action, in practices of providing for others. Under the watchful treatment of Aulino, care becomes a powerful foil for understanding recent political turmoil and structural change in Thailand, proving embodied practice to be a vital vantage point for phenomenological and political analyses alike.

Original source (some source materials require subscription or permission to access)

Resilience in family caregivers of patients diagnosed with advanced cancer - unravelling the process of bouncing back from difficult experiences, a hermeneutic review

Background: Despite the risk for developing mental disorders, most of advanced cancer patients' family caregivers undergo a resilient process throughout the caregiving period. Research on resilience in caregivers of advanced cancer patients is scarce and further hindered by the lack of a univocal definition and a theoretical framework.; Objectives: To provide clarity on the concept of resilience by proposing an integrative view that can support health care professionals and researchers in conducting and interpreting research on resilience.; Methods: The review process was inspired by the hermeneutic methodology: a cyclic review process, consisting of repeated searching and analysing until data saturation is reached and focussed on achieving a deeper understanding of ill-defined concepts. The definitions from eighteen reviews on resilience and the theoretical frameworks from eight concept analyses were analysed. The composing elements of resilience were listed and compared.; Results: The American Psychological Association's definition of resilience and Bonanno's theoretical framework are suggested to guide further research on resilience. Moreover, four knowledge gaps were uncovered: (1) How do resilience resources interact? (2) What are the key predictors for a resilient trajectory? (3) How do the resilient trajectories evolve across the caregiving period? And (4) how does the patient's nearing death influence the caregiver's resilience?; Conclusion: To address flaws in conceptualisation and the resulting gaps in knowledge, we suggest a definition and a theoretical framework that are suited to allow heterogeneity in the field, but enables the development of sound interventions, as well as facilitate the interpretation of intervention effectiveness.

Access source material through DOI

Reliability and Validity Testing of the FAMCARE-2 Scale: Thai Translation

Objective: Measuring the satisfaction of family caregivers regarding the palliative care provided to their family members is very important for quality improvement in the palliative care system. The aim of this study was to test the psychometric properties (i.e., reliability and validity) of the FAMCARE-2 Scale: Thai Translation for measuring family caregiver satisfaction. Methods: A forward–backward translation process was utilized to produce the 17-item FAMCARE-2 Scale: Thai Translation. The questionnaire and the demographic data form were hand-delivered to the primary family caregivers of 66 palliative care patients of the inpatient wards at Maharaj Nakorn Chiang Mai Hospital, Faculty of Medicine, Chiang Mai University, on the patient discharge date. Internal consistency reliability testing of the FAMCARE-2 Scale: Thai Translation was assessed by calculating the Cronbach's alpha coefficient. Factor analysis was used to test construct validity. Results: The FAMCARE-2 Scale: Thai Translation showed a high level of internal consistency (Cronbach's alpha coefficient of 0.94) and an item-to-total correlation coefficient of 0.13–0.77. Factor analysis of FAMCARE-2 revealed a four-factor structure: management of physical symptoms and comfort, patient care and sharing information, symptoms and side effects, and family and patient support. Conclusions: The FAMCARE-2 Scale: Thai Translation was found to be a valid psychometric tool for measuring family caregiver satisfaction within the Thai context of palliative care.

Access source material through DOI

A qualitative study of family carers views on how end-of-life communication contributes to palliative-oriented care in nursing home

Background: Although family-centered communication about end-of-life care has been recognized to promote palliative-oriented care in nursing home (NH), how this communication may work is still unknown. Therefore, we explored the mechanisms by which end-of-life communication may contribute to palliative-oriented care in NH from the perspective of bereaved family carers.; Methods: A descriptive qualitative design was performed. Interviews were conducted with 32 bereaved family carers whose relative had died between 45 days to 9 months prior from 13 different NHs. A two-steps analysis process firstly with deductive and then with inductive content analysis was adopted.; Results: Four mechanisms by which end-of-life communication contributed to palliative-oriented care were identified: a) promoting family carers understanding about their relative's health conditions, prognosis, and treatments available; b) fostering shared decision-making between healthcare professionals and residents/family carers; c) improving knowledge of residents' preferences; and d) improving knowledge of family carers' preferences.; Conclusion: Clear and in-depth communication provides insight into residents' and family carers' preferences for care and treatment at the end-of-life, and increases understanding and shared decision-making.

Access source material through DOI

Psychosocial problems of family caregivers of palliative care patients and their spiritual coping styles

Purpose: The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care. Design and Methods: The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale. Findings: The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38. Practice Implications: Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.

Access source material through DOI

Patient and caregiver perspectives on early identification for advance care planning in primary healthcare settings

Background: As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups. Interviews with patients and family caregivers were carried out in parallel to algorithm development and validation to examine (1) views on early identification of individuals at risk of deteriorating health or dying; (2) views on the use of a computerized algorithm for early identification; and (3) preferences and challenges for ACP. Methods: Fourteen participants were recruited from two Canadian provinces. Participants included individuals aged 65 and older with declining health and self-identified caregivers of individuals aged 65 and older with declining health. Semi-structured interviews were conducted via telephone. A qualitative descriptive analytic approach was employed, which focused on summarizing and describing the informational contents of the data. Results: Participants supported the early identification of patients at risk of deteriorating health or dying. Early identification was viewed as conducive to planning not only for death, but for the remainder of life. Participants were also supportive of the use of a computerized algorithm to assist with early identification, although limitations were recognized. While participants felt that having family physicians assume responsibility for early identification and ACP was appropriate, questions arose around feasibility, including whether family physicians have sufficient time for ACP. Preferences related to the content of and approach to ACP discussions were highly individualized. Required supports during ACP include informational and emotional supports. Conclusions: This work supports the role of primary care providers in the early identification of individuals at risk of deteriorating health or death and the process of ACP. To improve ACP capacity in primary healthcare settings, compensation systems for primary care providers should be adjusted to ensure appropriate compensation and to accommodate longer ACP appointments. Additional resources and more established links to community organizations and services will also be required to facilitate referrals to relevant community services as part of the ACP process.

Access source material through DOI

Experiences of relatives with outpatient palliative care: a cross-sectional study

Aim: The authors aimed to evaluate the experiences of the relatives of dying people, both in regard to benefits and special needs, when supported by a mobile palliative care bridging service (MPCBS), which exists to enable dying people to stay at home and to support patients' relatives. Design: A cross-sectional survey. Methods: A standardised survey was performed, asking 106 relatives of dying people about their experiences with the MPCBS (response rate=47.3%). Descriptive statistics were analysed using SPSS 23. Findings: Many relatives (62.5%) reported that their dying relations when discharged from a facility to stay at home were not symptom-free. The MPCBS helped relatives maintain home care, and this was reported to be helpful. Support provided by the MPCBS made it easier for 77.6% of relatives to adjust care as soon as situations changed, and helped ensure that symptoms could be better controlled, at least for 68.2% of relatives. Younger relatives felt more encouraged by the MPCBS to care for their relatives dying at home.

Access source material through DOI

Participating in the personal care of a person living with a life-limiting illness in a hospice inpatient setting: the informal caregiver's perspective

Methods: Using semi-structured interviews, this descriptive qualitative research study examined informal caregivers' perspectives of participating in the personal care of a person living with a life-limiting illness within one hospice inpatient setting. Some 10 principal, informal caregivers of hospice inpatients were recruited by means of purposive sampling, using posters displayed in the hospice inpatient unit. Thus, participation was entirely 'opt-in'. A flash card was displayed at the beginning of each interview to determine a definition of personal care. Field notes and digital audio recording were used to capture data collected.; Results: Data were thematically analysed and demonstrated that informal caregivers' perceptions of personal care included everything that allowed the patient to remain the person they were. Informal caregivers reported an acceptable balance between being able to carry out personal care and hospice nursing staff involvement, despite no discussions being carried out to establish their wishes. Prior experiences of informal caregiving, and individual caregiver preparedness, contributed to negative and positive feelings about participating in personal care. Informal caregivers reported additional support and education needs associated with being able to participate in the personal care of patients on discharge and in the future.; Conclusions: The emergent themes provide palliative care practitioners with direction for professional practice and research around supporting informal caregivers participating in personal care. Healthcare professionals need to clarify terminology of personal care by having dialogues with informal caregivers and acting on these accordingly. However, not all informal caregivers want such conversations. Consequently, healthcare professionals should approach this topic sensitively. Healthcare professionals ought to be asking informal caregivers if they wish to participate in personal care. Hospice nurses need to engage, support and educate informal caregivers about personal care. Furthermore, they should help to maintain and develop the skills of those informal caregivers who want to continue to play this role and not allow them to become deskilled.

Access source material through DOI

The "PalliActive Caregivers" Intervention for Caregivers of Patients With Cancer in Palliative Care: A Feasibility Pilot Study

This pilot study aimed to assess the feasibility and possible effects of the "PalliActive Caregivers," nursing intervention, on the uncertainty in illness and quality of life of family caregivers of patients with cancer receiving palliative care. This pilot study used a randomized controlled design. The participants were 80 family caregivers. The experimental group received the novel "PalliActive Caregivers" intervention. Data were collected using a sociodemographic form, the Uncertainty in Illness Scale, the Quality of Life scale, and an Intervention satisfaction questionnaire. The caregivers who received the intervention "PalliActive Caregivers" reported a high degree of satisfaction (9.74 on a 10-point scale). The intervention showed a significant decrease in uncertainty regarding illness in the experimental group (P = .009), as well as a significant decrease in the psychological well-being of quality of life within the experimental and control groups, before and after the intervention (P = .013, P = .010). It is recommended that future studies using the "PalliActive Caregivers" intervention examine the effects on other variables such as the burden of patient's symptoms, caregiver burden and rewards, self-efficacy in symptom management, competence, unmet needs, and satisfaction with care.

Access source material through DOI

Mobile applications for managing symptoms of patients with cancer at home: A scoping review

Background Education plays an important role in cancer symptom management for patients and their families. With the advancement of information and communication technology, there may be additional evidence for the use of mobile apps to support patient and family education. Purpose The purpose of this review was to explore and synthesize scientific literature about cancer symptom management mobile apps that can be used by patients and their families. Methods This review adopted a scoping review study framework, using electronic databases including EBSCO, PubMed, ProQuest, Science Direct, and Google Scholar using search keywords: ‘caregiver family’, ‘mobile application’, ‘symptom management’ and ‘palliative care’. Of a total of 2633 papers found, 11 papers were selected. Findings Assessment tools are a major component of mobile apps in reporting and assessing symptoms to provide appropriate education. The information in mobile apps is delivered through various mediums that include modules, videos, avatars and cultural integration features. Conclusion Mobile apps can improve provision of palliative care in several ways, most importantly by increasing the knowledge of the patient's family to manage cancer symptoms. Nurses are expected to play an active role in finding and utilizing appropriate mobile apps to assist families in managing a patient's symptoms at home.

Access source material through DOI

Living with Advanced Chronic Obstructive Pulmonary Disease: A Qualitative Interview Study with Patients and Informal Carers

The disease trajectory in chronic obstructive pulmonary disease (COPD) is characterised by a progressive decline in overall function, loss of independence and reduction of health-related quality of life. Although the symptom burden is high and care is often demanding, patients' and informal carers' experiences in living with advanced COPD are seldom described. This study sought to explore patients' and informal carers' experiences in living with advanced COPD and to understand their awareness about palliative care provision in advanced COPD. About 20 patients and 20 informal carers were recruited in a respiratory care service in Southern Switzerland. Semistructured individual interviews with participants were conducted on clinic premises and audio-recorded. Interviews lasted between 35 and 45 min. Data were analysed using thematic analysis. Living day to day with COPD, psychosocial dimension of the disease and management of complex care were the main themes identified. Patients and informal carers reported a range of psychological challenges, with feelings of guilt, discrimination and blame. Most of the participants had no knowledge of palliative care and healthcare services did not provide them with any information about palliative care approaches in advanced COPD. The reported psychological challenges may influence the relationship between patients, informal carers and healthcare professionals, adding further complexity to the management of this long-term condition. Further research is needed to explore new ways of managing complex care in advanced COPD and to define how palliative care may be included in this complex care network. 

Access source material through DOI

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC).; Objective: To identify common themes and topics of primary family caregivers' lived experiences with HBPC when taking care of terminally ill family members.; Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach.; Results: A total of 22 primary family caregivers participated in the study. "Wholeheartedly accompanying one's family to the end of life at home" was the core category. Six main themes describing caregivers' experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience.; Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers' preparedness for HBPC, including biopsychosocial and cultural considerations .

Access source material through DOI

Life Course Stage and Social Support Mobilization for End-of-Life Caregivers

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

Access source material through DOI

The Last Day Narratives: An Exploration of the End of Life for Patients with Cancer from a Caregivers' Perspective

Background: Surviving family caregivers describe the end-of-life experience as "very distressing" and half of those surveyed indicate inadequate emotional support; however, little is known about the causes of distress on the last day of life. Objective: The purpose of this study was to explore the experience of the last day of life from the perspective of the surviving caregiver. Design: The study used a narrative inquiry approach. Setting/Subject: Surviving caregivers of deceased adult cancer patients at a single institution were invited to participate. Measurements: After reviewing, coding, and categorizing the narratives individually, they were collectively considered and thematically analyzed across all cases to provide a summative analysis. Results: Six themes captured the overall experiences: (1) relationships and communication with health care providers impact overall experience, (2) being able to prepare for death was a source of comfort, (3) being a caregiver impacts quality of life and identity, (4) spiritual visitations as a welcome experience, (5) navigating the dying days and early grief period wrought with guilt and closure, and (6) loss of community contributes to distress and distracts from healing. Conclusions: In this study, distress was most often linked to communication failures. Caregivers also experienced distress and guilt related to the loss of their caregiver role. Findings also support a need for increased preparation for caregivers. Finally, the study showed the frequency of visitations/spiritual experiences during grieving. 

Access source material through DOI

The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Objectives: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges carers of people with dementia face towards the end of life and the support needs which could be addressed by online support. Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016–2017. Interviews were analysed using thematic analysis methods. Results: Most carers interviewed had positive views of receiving support online via a website. Participants described a series of challenges they felt online support could address and help support them with when caring for someone with dementia towards the end of life: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) balancing their own needs with those of the individual; and 4) maintaining control and being the co-ordinator of care. However many valued a mix of technology and human interaction in receiving support. Conclusions: This study has identified the key challenges for carers at the end of life that could be met by online support. Online support offers a source of support to supplement face-to-face contact, as many carers still wish to talk to someone in person. This could help alleviate pressures which health and social care systems currently face.

Access source material through DOI

"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. Objectives: To understand the decisional needs of patients and families making decisions about hospice care. Methods: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? Discussion: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.

Access source material through DOI

Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

Objectives: Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers. Design: Cross-sectional. Setting: Caregivers of people with dementia living at home or in a care home. Participants: In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%). Measurements: Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales ("personal sacrifice burden"; "heartfelt sadness"; "worry and felt isolation"). Results: Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower "heartfelt sadness." Conclusion: We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers' social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).

Access source material through DOI

Insights from Bereaved Family Members about End-of-Life Care and Bereavement

Background: Bereavement programs provide institutions with an avenue for obtaining feedback from family members about their experiences during a patient's illness and end-of-life (EOL) period that can be used to improve both patient care and the care of bereaved individuals. Objective: We examined family members' experiences about the clinical care their loved one received at EOL and the perceived effect this care had on their subsequent bereavement. Design: Survey. Setting/Subjects: One hundred forty bereaved family members from our cancer institute completed a bereavement survey. Of these family members, 67% were female, 66% were 60 years of age or older, and 81% were widowed. Measurement: We analyzed open-ended responses using NVivo 11 Plus© that asked bereaved family members about the ways the clinical (oncology) team was helpful or not in dealing with their loss. Results: The findings showed that compassionate care, competency, receiving honest facts, and outreach after the death favorably influenced the bereavement experience. Conversely, impersonal contact, lack of contact, including lack of caregiver support, and lack of information about EOL and death were identified as actions taken by the clinical team that were unhelpful in dealing with their loss. Conclusions: The feedback from bereaved family members highlights two areas that could benefit from quality improvement efforts: (1) communication skills that focus on enhancing compassionate connection, including conveying empathy, and providing reassurance and guidance to patients and their families and (2) communication skills that focus on delivering information about prognosis and the EOL period in an honest and direct way.

Access source material through DOI

"How Long Can I Carry On?" The Need for Palliative Care in Parkinson's Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.

Access source material through DOI

How do family-caregivers of patients with advanced cancer provide symptom self-management support? A qualitative study

The family-caregiver role is of critical importance to the success of symptom-related self-management of patients with advanced cancer. This study examined the perspectives of patients and family-caregivers regarding the role of the family-caregiver in symptom-related self-management support (SMS). Semi-structured interviews were conducted in patients with advanced cancer experiencing significant symptom burden and their family-caregivers. An inductive content analysis approach was used to analyse data. Eleven patients and ten family caregivers were included. Identified themes were 1) engaging in specific symptom-related SMS ; 2) interacting with health care professionals ; and 3) balancing patient need versus expectation. These themes were applicable to both the family-caregiver and patient cohorts, regardless of the individual symptom profile of each patient. The role of family-caregivers of patients with advanced cancer is complex and varied in providing symptom-related SMS at home; often requiring family-caregivers to have diverse knowledge and skills in the management of a range of cancer-related symptoms. Health care professionals can support family-caregivers by anticipating needs, tailoring evidence-based information to those needs, and ensuring family-caregivers have an appropriate contact point for advice or help.

Access source material through DOI

Hospice interdisciplinary team providers' attitudes toward sexual and gender minority patients and caregivers

Objective: Hospice interdisciplinary team (IDT) providers' attitudes toward sexual and gender minority (SGM) patients and family caregivers impacts quality of care and end-of-life outcomes. This study assessed hospice IDT provider attitudes toward SGM patients and caregivers and identified demographic predictors.; Methods: Hospice IDT providers (N = 122) completed an adapted 11-item scale measuring attitudes toward SGM hospice patients and caregivers. Descriptive statistics, confirmatory factor analysis, and regression models were conducted.; Results: The hospice-adapted Attitudes Toward LGBT Patients Scale (ATLPS) demonstrated acceptable Cronbach's alpha (0.707). Total scores ranged from 32 to 55 (M = 47.04, SD = 5.64) showing that attitudes were generally positive. Being religious (B=-3.169, p = 0.008) was associated with more negative attitudes, while higher education (B = 1.951, p = 0.002) and time employed in hospice agency (B = 0.600, p = 0.028) were associated with more positive attitudes.; Conclusion: This is among the first studies to assess SGM-specific hospice IDT attitudes. Participants had relatively positive attitudes, influenced by religious beliefs, clinical experience, and education. CFA results suggest the need for better instruments to measure this complex construct.; Practice Implications: Education incorporating evidence of disparities, life-course perspectives, and end-of-life experiences of diverse cohorts of SGM patients and families may build on hospice IDT members' experience and training by influencing attitudes, reducing bias and improving competency. 

Access source material through DOI

Hospice Family Caregivers' Use of Audio Diaries: Preliminary Findings (GP793)

Objectives: • Describe the implications of emotional processing of stressful events for hospice family caregivers. • Interpret preliminary findings from textual data analysis of hospice family caregiver diaries.  Importance: Evidence suggests that meaning-making and emotional processing can improve home hospice family caregivers' (HFCs) well-being. Previous work has used diary writing to process stressful events; in the current study, HFCs were asked to record brief daily audio diaries.  Objective(s): To determine the feasibility of capturing audio diaries and describe diary content.  Method(s): In an ongoing multi-site, multi-method prospective longitudinal study, HFCs of cancer patients report daily fluctuation of patient and their own symptoms via an automated telephone system. Additionally they are randomly assigned to: discuss additional symptoms or to discuss their thoughts/feelings. Thirty-six (85.7%) participants to date have completed at least one audio diary. For this preliminary analysis, we selected 14 diary recordings/condition (n=28) to describe and compare.  Results: Participants are 78.6% female, on average 53.0 years old, and most are a spouse/partner (46.4%) or a child (35.7%) caregiver. Audio data were transcribed and aggregated by condition. Both Linguistic Inquiry Word Count (LIWC) and NVivo 12 were used to analyze word use. Time was the most common theme in both conditions, but was more common in the symptom condition (p=.08). There was no difference in overall negative/positive word valence use, with 23% positivity and 77% negativity across both groups. However, a significant difference in the use of specific emotion words was found; the thoughts/feeling condition used more anger-related words (p=.04), while the symptom condition used more anxiety words (p=.003).  Conclusion(s): Our preliminary findings suggest that most HFCs will use audio diaries to express concerns and that the focus of open-ended prompts may facilitate different emotional expression.  Impact: Low-cost, easy-to-use audio diaries may be a useful emotional processing tool for HFCs. Future research is warranted of a larger HFC sample examining their repeated daily use of audio diaries to assess for impact on emotional well-being and bereavement adjustment.

Access source material through DOI

Heart failure caregivers' support services: Implications for palliative care

Palliative care initiatives strive to control symptoms and improve the quality of care for individuals with heart failure (HF) and their informal caregivers. Yet, caregiving is stressful for many caregivers and requires a delicate balancing act between providing quality care and maintaining other responsibilities. Support services are a crucial component of palliative care. Yet, little is known regarding what support services HF caregivers need to assist with caregiving duties. Thus, the purpose of this study was to identify support services informal caregivers perceive would be useful in caring for individuals with heart failure in the home. This secondary analysis was part of a cross-sectional, descriptive, exploratory study which included 530 heart failure caregivers, using an online self-report instrument. Content and quantitative data analyses were conducted. Caregivers were primarily Caucasian (n = 415; 78.3%) male (n = 270; 50.9% male), with an average age of 41.4 (±10.4) years. Individuals with heart failure were mostly male (n = 297; 56.0%), age 54.3 (± 14.8) years of age and had New York Heart Association Class I-II heart failure (n = 375; 70.7%). Needed support services identified by caregivers related to cost effective heart failure support, caregiver information/education/training, and caregiver support. These services had two or more components. Caregivers of individuals with heart failure experience complex problems in the home that require important services to enhance palliative care. Exploring ways to provide these important support services will assist in the development of interventions to reduce negative outcomes and enhance heart failure palliative care. 

Access source material through DOI

Grief symptoms and primary care use: a prospective study of family caregivers

Background: Family caregivers to patients who are severely ill have high use of primary health care and psychotropic medication. However, it remains sparsely investigated whether healthcare services target the most vulnerable caregivers. Aim: This study aimed to examine associations between family caregivers' grief trajectories of persistent high- grief symptom level (high- grief trajectory) versus persistent low- grief symptom level (low- grief trajectory), as well as early contacts with GPs or psychologists and the use of psychotropic medication. Design & setting: A population- based cohort study of family caregivers (n = 1735) in Denmark was undertaken. Method: The Prolonged Grief-13 (PG-13) scale measured family caregivers' grief symptoms at inclusion (during the patient's terminal illness), 6 months after bereavement, and 3 years after bereavement. Multinomial regression was used to analyse register- based information on GP consultations, psychologist sessions, and psychotropic medication prescriptions in the 6 months before inclusion. Results: A total of 1447 (83.4%) family caregivers contacted their GP, and 91.6% of participants in the high- grief trajectory had GP contact. Compared with family caregivers in the low- grief trajectory, family caregivers in the high- grief trajectory had ≥4 face- to- face GP consultations (odds ratio [OR] = 2.6; 95% confidence interval [CI] = 1.3 to 5.0), more GP talk therapy (OR =4.4; 95% CI = 1.9 to 10.0), and more psychotropic medication, but not significantly more psychologist sessions (OR = 1.7; 95% CI = 0.5 to 6.6). Conclusion: Family caregivers in the high- grief trajectory had more contact with their GP, but their persisting grief symptoms suggest that primary care interventions for family caregivers should be optimised. Future research is warranted in such interventions and in the referral patterns to specialised mental health care.

Access source material through DOI

Family Caregiving at the End of Life and Hospice Use: A National Study of Medicare Beneficiaries

BACKGROUND/OBJECTIVES Hospice care confers well‐documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end‐of‐life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types. DESIGN Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data. SETTING Contiguous United States. PARTICIPANTS A total of 1,868 NHATS decedents. MEASUREMENTS Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self‐reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics. RESULTS: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0–4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life. CONCLUSION: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness. 

Access source material through DOI

Factors associated with overall satisfaction with care at the end‐of‐life: Caregiver voices in New Zealand

In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross‐sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self‐complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty‐six completed questionnaires were returned (response rate = 21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65 years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in‐depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end‐of‐life.

Access source material through DOI

An Exploration of Questions from Informal Family Caregivers of Cancer Patients in Home Hospice (RP418)

Objectives: • Identify the domains of care as outlined by the National Consensus Panel Clinical Practice Guidelines for Quality Palliative Care caregivers ask the majority of questions in a home hospice visit. • Recognize and discuss how to use questions from the informal caregiver in the home hospice environment to reveal caregiver misunderstandings and level of comprehension about the patient's plan of care. •Determine which domains of care caregivers state uncertainty and confusion yet caregivers do not ask questions in these areas.  Importance: With a growing number of people choosing home hospice care after a terminal cancer diagnosis, communication between the hospice nurse and the informal caregiver is at the forefront of hospice care. Expert communication is vital to convey not only how to carry out the plan of care but also how assess family caregiver's understanding that plan.  Objective(s): The aim of this project was to explore the scope of questions from caregivers of cancer patients in home hospice by categorizing caregiver questions using the National Consensus Panel Clinical Practice Guidelines for Quality Palliative Care (NCP) as a template with the addition of the domain Relationship Building to be inclusive of all therapeutic communication.  Method(s): This was a secondary analysis of audio recordings of home hospice nurse visits (N= 32 visits). Coding was conducted in two waves using NVivo 11 software; first a deductive content analytic process was applied to caregiver questions to identify the NCP care domain; next questions were inductively coded into emerging subcategories.  Results: Questions (N = 224) from caregivers were found in four domains; Physical Aspect of Care (149), Care of the Imminently Dying (37), Relationship Building (36), and Cultural (1). In the domain, Physical Aspect of Care, Medication Management (43%) was the most common subcategory. In Relationship Building, 92% of questions focused on Personal Information about the nurse. In the domain, Care of the Imminently Dying, questions about Symptoms to Recognize (that death was imminent) (57%) were the most common.  Conclusions: Results suggest caregivers struggle with basic information acquisition and retention concerning the care of patient and what to expect as the patient deteriorates.  Impact: Caregivers have unmet educational needs in areas of medication management and need further explanation of what future care of the patient entails as the patient deteriorates. Future research is needed to explore how to elicit questions from domains caregivers have stated uncertainty in, yet tend to avoid, such as cultural and spiritual aspects of care.

Access source material through DOI

Experiences with making difficult decisions of the family caregivers of patients on prolonged mechanical ventilation: a qualitative study

Background: Family caregivers of patients on prolonged mechanical ventilation (PMV) may encounter challenges concerning medical decision-making besides witnessing patient suffering. Palliative care (PC) should be a good support for both patients and caregivers; however, for PMV families, PC is not always a choice through long companion time. This qualitative study clarifies family caregivers' burden of assisting patients on PMV and evaluates the need for PC information and support.; Methods: Interviews were caregivers of patients on ventilator support for more than 60 days in five hospitals of the Taipei City Hospital System. Based on phenomenology, this study was conducted by using a semistructured questionnaire comprising three questions: (I) what was the most crucial moment of deciding to intubate? (II) how would you describe the quality of life of your ventilator-dependent family member? (III) what type of assistance do you expect from the PC team for your ventilator-dependent family member?; Results: Twenty-one caregivers of patients on PMV in five hospitals of the Taipei City Hospital System agreed to participate in face-to-face interviews. The identified themes, including stressful decision-making, companion pain/discomfort, and unwillingness to accept PC, elucidated the difficulties experienced by caregivers when providing care.; Conclusions: Understanding family caregivers' experiences can enable physicians to improve communication with them, encourage the PC team to support them during surrogate decision-making for patients on PMV during critical moments, and enhance the overall PC service.

Access source material through DOI

Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis

Background and objectives: Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner's end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver's aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough's Weight of Evidence and Morgan's Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) "Embodied impact of care" whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) "Caregiving spouse's conceptualisation of their role" in which caregiver's navigated their self and marriage identities in relation to their partner's condition and expectations about gender and place; 3) "Learning to care" which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity. 

Access source material through DOI

Experiences of caregivers in a home-based palliative care model – A qualitative study

Background: Family caregivers are of vital support to patients receiving home-based palliative care. Aims and Objectives: This study sought to identify and comprehend the challenges that caregivers face while taking care of a terminally ill patient in a home-based palliative care setting and the mechanisms that facilitated their coping. Materials and Methods: A qualitative approach was employed to understand the perceptions of primary caregivers through 3 focus group discussions and 4 in-depth interviews, across 3 socioeconomic categories and 3 geographic zones of Mumbai. Results: Caregivers expressed that they wished they had been introduced to palliative care earlier. Being trained on minor clinical procedures and managing symptoms, and receiving emotional support through counselling were found beneficial. Caregivers did not perceive the need for self-care as the period of active caregiving was often short. Bereavement counselling was felt to be of much help. Conclusion: The study helped understand the caregivers' perceptions about the factors that would help them in patient as well as self-care. Recommendations for designing interventions for future caregivers and recipients were also made.

Access source material through DOI

The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review

Objective: The purpose of this study is to explore the evidence surrounding educational videos for patients and family caregivers in hospice and palliative care. We ask three research questions: 1. What is the evidence for video interventions? 2. What is the quality of the evidence behind video interventions? 3. What are the outcomes of video interventions? Methods: The study is a systematic review, following Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines. Researchers systematically searched five databases for experimental and observational studies on the evidence supporting video education for hospice and palliative care patients and caregivers, published in 1969-2019. Results: The review identified 31 relevant articles with moderate-high quality of evidence. Most studies were experimental (74 %), came from the United States (84 %) and had a mean sample size of 139 participants. Studies showed that video interventions positively affect preferences of care and advance care planning, provide emotional support, and serve as decision and information aids. Conclusion: A strong body of evidence has emerged for video education interventions in hospice and palliative care. Additional research assessing video interventions' impact on clinical outcomes is needed. Practice Implications: Videos are a promising tool for patient and family education in hospice and palliative care.

Access source material through DOI

End‐of‐life care in rural and regional Australia: Patients', carers' and general practitioners' expectations of the role of general practice, and the degree to which they were met

The study objective was to explore the characteristics of rural general practice which exemplify optimal end‐of‐life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi‐structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities. 

Access source material through DOI

Elements of Family, Social Relationships, and Caregiving in Palliative Care mHealth: A Scoping Review (GP781)

Objectives: • Identify research-based and commercial mobile applications currently available to support palliative and end of life care. • Evaluate the utility of current palliative care and end of life mobile applications for families and caregiving support among diverse populations.  Importance: Mobile health (mHealth) can increase access to and awareness of palliative and end of life (PCEOL) care among patients, families, and caregivers from diverse backgrounds.  Objective(s): The objective of this scoping review is to describe the inclusion and features for family, social relationships, and caregivers in PCEOL-specific mHealth.  Method(s): We conducted a systematic search of PCEOL mHealth that included: 1) research-based mobile applications (apps) from PubMed, PsycINFO, and Web of Science published between 1/1/10-3/31/19, and 2) commercially available apps for iPhone, Google Play, and Amazon Appstore in April 2019. Apps were included if they focused on at least one element of PCEOL and targeted adults with serious life-limiting illness and/or their family and caregivers. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria.  Findings: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified (N=32). Apps targeted symptom management (74.2%) followed by decision support (19.4%) and bereavement or grief (16.1%). Commercially available apps were designed for both patients and family caregivers (n=9/22, 40.9%), while research apps were designed for patient use (n=8/9, 88.9%). Features allowing the patient to share app-generated materials, e.g., advanced care directives or legacy projects, via email or text were the most common patient-caregiver features (n=10/22, 45.5%). Only 2/32 (6.3%) of apps considered contextual factors such as marriage, social isolation, or socioeconomic status of the patient or family caregivers.  Conclusion(s): Results suggest there is an emerging presence of apps for patients and caregivers dealing with serious illness, yet there are many needs for developers and researchers to address.  Impact: Additional research is needed for apps that embrace a team approach to information sharing, target family and caregiver specific issues, promote access to palliative care, and comprehensively address palliative needs.

Access source material through DOI

Effects of Early Palliative Care for Family Caregivers of Persons with Advanced Heart Failure: The ENABLE CHF-PC Randomized Controlled Trial (CS201A)

Objectives: • Explain the experience and tasks undertaken by family caregivers of patients with advanced heart failure. • Summarize results and implications of the ENABLE CHF-PC trial for family caregivers.  Importance: Family caregivers (CGs) provide high levels of care to persons with advanced heart failure and are at high risk for distress and poor quality of life (QoL).  Objective(s): Determine the effect of a nurse-led palliative care telehealth intervention (ENABLE CHF-PC) on advanced heart failure CGs QoL and mood over 16 weeks.  Method(s): Intervention versus usual care single-blind randomized controlled trial (August 2016-October 2018; ClinicalTrials.gov: NCT02505425). Family caregivers of patients with NYHA Class III/IV heart failure were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs Medical Center. Intervention-group caregivers received four weekly psychosocial and problem-solving support telephonic sessions facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The primary outcomes were QoL (Bakas Caregiving Outcomes Scale [BCOS]), mood (Hospital Anxiety and Depression Scale [HADS]), and burden (Montgomery-Borgatta Caregiver Burden scale [MBCB]) over 16 weeks.  Results: Of 159 CGs randomized to ENABLE CHF-PC (n=83) or usual care (n=76), mean age was 57.9, 85.4% were female, 51.9% were African American, and 65.2% were the patient's spouse/partner. Over 16 weeks, the mean BCOS score improved 0.7 points (SE=1.7) in the intervention arm and 1.1 points (SE=1.6) in the usual care arm (difference, -0.4; 95% CI, -5.1-4.3; d=-0.03). No relevant between-group differences were observed for HADS-anxiety (d=-0.02), HADS-depression (d=0.03), and the MBCB scale (d range: -0.18-0.0). P-values for all outcomes were >.05.  Conclusion(s): This 2-site randomized controlled trial of the ENABLE CHF-PC intervention for family caregivers of advanced heart failure patients, over half of whom were African-Americans and most of whom were not distressed at baseline, did not demonstrate clinically improved QoL, mood, or burden compared to usual care over 16 weeks.  Impact: Future interventions should target distressed family caregivers and assess effects on patient outcomes.

Access source material through DOI

Effects of a Death Education Intervention for Older People with Chronic Disease and Family Caregivers: A Quasi-Experimental Study

To investigate the effectiveness of a structured death education program for older adults with chronic illness and their family caregivers. This study adopted two-group, nonrandomized quasi-experimental design. Patient–caregiver dyads in the intervention group (N = 40 dyads) engaged in the death education program at the bedside once a week for 5 weeks, and were compared with participants (N = 40 dyads) in the control group who received usual health education. The program consisted of five sessions based on the Interaction Model of Client Health Behavior. Death attitude, death competence, well-being, family function, and satisfaction were measured at baseline (T0), immediately after the intervention (T1), and 1 month later (T2). Data collection was conducted from July 30, 2019, to December 30, 2019. The intention-to-treat analysis The intention-to-treat analysis of between groups at 1-month follow-up revealed that the intervention group had greater decreases in the fear of death (p =.002, 95% CI -2.53, -0.47; p <.001, 95% CI -3.61, -1.65) and death avoidance (p <.001, 95% CI -3.46, -1.84; p <.001, 95% CI -3.89, -2.43), had greater increases in the neutral acceptance (p =.032, 95% CI 0.05, 1.38; p <.001, 95% CI 0.99, 2.56) and death competence (p <.001, 95% CI 4.10, 8.01; p <.001, 95% CI 7.80, 12.11) in patients and caregivers, respectively. There were significant intergroup differences over time for patient well-being of (p <.001, 95% CI 3.06, 9.74) and satisfaction of (p <.001, 95% CI 2.01, 4.59). Results were consistent with the results from the sensitivity analysis. This study demonstrated the feasibility and benefits of death education in hospitals and provided an implementation plan for nursing professionals. Nurses should consider providing death education for older adults with chronic diseases and their families to promote the development of palliative care and the quality of end-of-life.

Access source material through DOI

The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers

Background: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously.; Objectives: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families.; Search Methods: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies.; Selection Criteria: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting.; Data Collection and Analysis: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available.;

Main Results: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I 2 = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I 2 = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I 2 = 0%, 2 studies, 37 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I 2 = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I 2 = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision.; Authors' Conclusions: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations. 

Access source material through DOI

Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial

Background: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.; Methods: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.; Results: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes.; Conclusion: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals.; Trial Registration Number: NCT03466580. 

Access source material through DOI

The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study

Background: It is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers. Methods: The sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. Results: Before intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0.001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains. Conclusion: The provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided. 

Access source material through DOI

The Effect of 20-Minute Mindful Breathing on the Perception of Suffering and Changes in Bispectral Index Score (BIS) in Palliative Care Informal Caregivers: A Randomized Controlled Study

Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 (U = 124.0, n1 = n2 = 20, mean rank1 = 24.30, mean rank2 = 16.70, z = −2.095, P =.036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 (U = 19.5, n1 = n2 = 20, mean rank1 = 29.52, mean rank2 = 11.48, z = −4.900, P <.0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.

Access source material through DOI

Evaluation of a Collaborative Advance Care Planning Intervention among Older Adult Home Health Patients and Their Caregivers

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP). Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers. Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity. Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes. Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's κ coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/√N) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values. Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03). Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.

Access source material through DOI

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life

Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. Design: Longitudinal qualitative study with thematic analysis. Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.

Access source material through DOI

Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review

Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited. Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature. Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions. Data sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017). Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management. Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease.

Access source material through DOI

Does Family Caregiver Burden Differ Between Elderly and Younger Caregivers in Supporting Dying Patients With Cancer? An Italian Study

Context: The aging of the world's population increasingly calls on older people to care for their cancer relatives. This scenario confronts clinicians involved with end-of-life care with an imposing challenge: elderly family caregivers could have a different perception of the burdens associated with assistance compared to their younger counterparts. Palliativists need to know what limits and resources of these new age categories of caregivers could be for a global management of dying patients with cancer and their family. Objectives: To evaluate the caregiver burden in family caregivers supporting dying patients with cancer in order to compare the differences between 2 different caregivers age groups (younger vs elderly population). Methods: This is a cross-sectional study. A total of 174 family caregivers of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into 2 subgroups aged <65 (younger group) and ≥65 years old (elderly group). Results: Compared with younger caregivers, the elderly group reported significantly higher scores in the CBI–developmental subscale (P =.009) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. No further differences were found between the 2 age groups in the other CBI scores (time-dependent, physical, social, emotional, and overall score). Conclusion: Elderly caregivers are at high risk for experiencing developmental burden. This finding could prompt mental health professionals to pay greater attention to the value that assistance to the family member can have on their personal story and on that of the family or couple.

Access source material through DOI

Developing Unique Insights From Narrative Responses to Bereaved Family Surveys

Context: Although bereaved family surveys (BFS) are routinely used quantitatively for quality assessment, open-ended and narrative responses are rarely systematically analyzed. Analysis of narrative responses may identify opportunities for improving end-of-life (EOL) care delivery. Objectives: To highlight the value of routine and systematic analysis of narrative responses and to thematically summarize narrative responses to the BFS of Veterans Affairs. Methods: We analyzed more than 4600 open-ended responses to the BFS for all 2017 inpatient decedents across Veterans Affairs facilities. We used a descriptive qualitative approach to identify major themes. Results: Thematic findings clustered into three domains: patient needs, family needs, and facility and organizational characteristics. Patient needs include maintenance of veteran's hygiene, appropriately prescribing medications, adhering to patient wishes, physical presence in patient's final hours, and spiritual and religious care at EOL. Family and caregiver needs included enhanced communication with the patient's care team, assistance with administrative and logistical challenges after death, emotional support, and displays of respect and gratitude for the patient's life. Facility and organizational characteristics included care team coordination, optimal staffing, the importance of nonclinical staff to care, and optimizing facilities to be welcoming, equipped for individuals with disabilities, and able to provide high-quality food. Conclusion: Systematic analysis of narrative survey data yields unique findings not routinely available through quantitative data collection and analysis. Organizations may benefit from the collection and regular analysis of narrative survey responses, which facilitate identification of needed improvements in palliative and EOL care that may improve the overall experiences for patients and families. 

Access source material through DOI

Cultural Values, Preferences, and Goals of End-of-Life Care of Family Members of Patients with Life-Limiting Illness in Kumasi, Ghana: A Community-Based Study (GP702)

Objectives: • Recognize the Importance and relevance of culture to EOL care. • Describe CBPR and focus group methods. • Examine what patients with serious illness in Ghanaian hospital face.

Original Research Background: Understanding patient and family cultural values, preferences and goals of care in patients with life-threatening illness is the first step in ensuring the provision of goal-concordant care. Palliative care (PC) programs are at their infancy in Ghana, with three PC physicians and four nurses at Komfo Anoyke Teaching Hospital (KATH) in Kumasi, a city of 1.5m people. Ghana has a collectivist culture in which families and communities, not the individual, is central. Little is known about End of Life (EoL) care values, care preferences and goals of care.  Research Objectives: To gain an understanding of cultural values, preferences and goals of care of family caregivers of patients who had received EoL care at KATH.  Methods: Community Based Participatory Research served as the study's guiding principles. An 8-member Community Advisory Group advised on focus group implementation including meeting site, topics of discussion, ethical considerations, and recruitment methods. The focus group included nine family members and focused on care received by their loved one during their recent serious illness. This session was recorded, transcribed and analyzed using a systematic thematic analysis.  Results: Emergent themes included problems related to healthcare system: unreliable access to doctors, high cost of care (self-pay is the main method), challenges of getting diagnosed, pain and symptom burden, and poor doctor-patient-caregiver communication. Three cultural values emerged: caregivers' pivotal role in caring for loved ones; discussion of prognosis requiring involvement of others, and key role of God/faith in illness and dying processes.  Conclusion: This pilot study provided PC physicians insight into values, preferences and goals of care, and provided community caregivers the opportunity to participate at the start of designing a culturally-based EOL care program.  Implications for Research, Policy or Practice: Understanding community values and preferences is the first step towards building programs that ensure culturally-based goal-concordant care. Overcoming the systemic barriers will require longer-term efforts.

Access source material through DOI

Cost-effectiveness analysis of systematic fast-track transition from oncological treatment to specialised palliative care at home for patients and their caregivers: the DOMUS trial

Background: While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers. Methods: A full economic evaluation with a time horizon of six months was performed from a societal perspective within a randomised controlled trial, the DOMUS trial (Clinicaltrials.gov: NCT01885637). The primary outcome of the health economic analysis was a incremental cost-effectiveness ratio (ICER), which is obtained by comparing costs required per gain in Quality-Adjusted Life Years (QALY). The costs included primary and secondary healthcare costs, cost of intervention and informal care from caregivers. Public transfers were analysed in seperate analysis. QALYs were measured using EORTC QLQ-C30 for patients and SF-36 for caregivers. Bootstrap simulations were performed to obtain the ICER estimate. Results: In total, 321 patients (162 in intervention group, 159 in control group) and 235 caregivers (126 in intervention group, 109 in control group) completed the study. The intervention resulted in significantly higher QALYs for patients when compared to usual care (p-value = 0.026), while being more expensive as well. In the 6 months observation period, the average incremental cost of intervention compared to usual care was €2015 per patient (p value < 0.000). The mean incremental gain was 0.01678 QALY (p-value = 0.026). Thereby, the ICER was €118,292/QALY when adjusting for baseline costs and quality of life. For the caregivers, we found no significant differences in QALYs between the intervention and control group (p-value = 0.630). At a willingness to pay of €80,000 per QALY, the probability that the intervention is cost-effective lies at 15% in the base case scenario. Conclusion: This model of fast-track SPC enriched with a psychological intervention yields better QALYs than usual care with a large increase in costs. Trial registration: The trial was prospectively registered 25.6.2013. Clinicaltrials.gov Identifier: NCT01885637. 

Access source material through DOI

Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

Background: End-of-life caregiving frequently is managed by friends and family. Studies on hastened death, including aid in dying or assisted suicide, indicate friends and family also play essential roles before, during, and after death. No studies have compared the experiences of caregivers in hastened and non-hastened death. The study aim is to compare end-of-life and hastened death caregiving experience using Hudson's modified stress-coping model for palliative caregiving. Method: Narrative synthesis of qualitative studies for caregivers at end of life and in hastened death, with 9946 end-of life and 1414 hastened death qualitative, peer-reviewed research articles extracted from MEDLINE, CINAHL, Web of Science, and PsycINFO, published between January 1998 and April 2020. Results: Forty-two end-of-life caregiving and 12 hastened death caregiving articles met inclusion criteria. In both end-of-life and hastened death contexts, caregivers are motivated to ease patient suffering and may put their own needs or feelings aside to focus on that priority. Hastened death caregivers' expectation of impending death and the short duration of caregiving may result in less caregiver burden. Acceptance of the patient's condition, social support, and support from healthcare professionals all appear to improve caregiver experience. However, data on hastened death are limited. Conclusion: Caregivers in both groups sought closeness with the patient and reported satisfaction at having done their best to care for the patient in a critical time. Awareness of anticipated death and support from healthcare professionals appear to reduce caregiver stress. The modified stress-coping framework is an effective lens for interpreting caregivers' experiences at end of life and in the context of hastened death. 

Access source material through DOI

Comparing Symptom Ratings by Staff and Family Carers in Residents Dying in Long-Term Care Facilities in Three European Countries, Results From a PACE Survey

Context Symptom management is essential in the end-of-life care of long-term care facility residents. Objectives To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life. Methods A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level. Results Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying. Conclusion There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.

Access source material through DOI

Comparing Advance Care Planning in Young-Onset Dementia in the USA vs Belgium: Challenges Partly Related to Societal Context

Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. An exploratory qualitative study. We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient. We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis. Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians. Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made. 

Access source material through DOI

Caregiver preparedness for death in dementia: an evaluation of existing tools

Objectives: Death preparedness amongst family caregivers (CG) is a valuable and measurable concept. Preparedness predicts CG outcomes in bereavement and is modifiable through a palliative approach which includes advance care planning (ACP) interventions. Improving death preparedness is important for CGs of persons with dementia (PwD) whom are more likely to develop negative outcomes in bereavement, and experience less than adequate palliative care. However, the adequacy of existing tools to measure death preparedness in CGs of PwD is unknown, which limits intervention design and prospective evaluation of ACP effectiveness. Methods: We conducted a review and evaluation of existing tools measuring the attribute domains and traits of CG death preparedness. Literature was searched for articles describing caregiving at end of life (EOL). Measurement tools were extracted, screened for inclusion criteria, and data extracted regarding: conceptual basis, population of development, and psychometrics. Tool content was compared to preparedness domains/traits to assess congruency and evaluate the adequacy of tools as measures of death preparedness for CGs of PwD. Results: Authors extracted 569 tools from articles, retaining seven tools for evaluation. The majority of tools, n = 5 (70%) did not sample all preparedness domains/traits. Few tools had items specific to EOL; only one tool had a specific item questioning CG preparedness for death, and only one tool had items specific to dementia. Conclusion: Limitations in existing tools suggest they are not adequate measures of death preparedness for CGs of PwD. Consequently, the authors are currently developing a questionnaire to be titled, 'Caring Ahead' for this purpose.

Access source material through DOI

Building trust and facilitating goals of care conversations: A qualitative study in people with heart failure receiving home hospice care

Background: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers. Aim: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice. Design: A qualitative descriptive study design was used with semi-structured interviews. Setting/participants: We conducted qualitative interviews with persons with heart failure, family caregivers, and interprofessional healthcare team members at a large not-for-profit hospice agency in New York City between March 2018 and February 2019. Results: A total of 39 qualitative interviews were conducted, including with healthcare team members (e.g. nurses, physicians, social workers, spiritual counselors), persons with heart failure, and family caregivers. Three themes emerged from the qualitative interviews regarding facilitators and barriers in goals of care conversations for better decision-making: (1) trust is key to building and maintaining goals of care conversations; (2) lack of understanding and acceptance of hospice inhibits goals of care conversations; and (3) family support and engagement promote goals of care conversations. Conclusion: Findings from this study suggest that interventions designed to improve goals of care conversations in the home hospice setting should focus on promoting understanding and acceptance of hospice, family support and engagement, and building trusting relationships with interprofessional healthcare teams.

Access source material through DOI

Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers

Background: While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing. Methods: This study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers. Results: Findings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member's pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member's prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver. Conclusion: Fulfilling and enhancing one's sense of self-determination appears central to infusing one's caregiving motivations with positive meaning, and consequently nurturing one's wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.

Access source material through DOI

Beliefs of Israeli Family Caregivers of People with Dementia toward Advance Care Planning

Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior. Face-to-face interviews were conducted with a convenience sample of 20 family caregivers of people with dementia in Israel. The behavioral beliefs expressed by the participants referred to the dual benefits of ACP, for the person who will not be able to make medical decisions at the end of life and for themselves. Participants mentioned that family members and friends were the main persons with whom they would consult in making decisions regarding ACP. Personal characteristics and instrumental factors were mentioned as enablers and barriers to undertaking ACP. Findings from the study provide an important basis for expanding research and for developing interventions that can encourage undertaking ACP.

Access source material through DOI

Becoming a family caregiver of a patient living with cancer

Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional. Studies are needed to investigate this issue.; Aims: The purpose of this study was to reveal difficulties experienced by a nurse family caregiver offering care to a family member diagnosed with end-stage cancer and how she coped with these difficulties.; Methods: This was an autoethnographic study.; Findings: Findings were grouped under three headings: being both a researcher and a subject; effects of caregiving; and coping.; Conclusions: Offering care to a cancer patient has many physiological and psychological effects. If a family caregiver is a health professional, his/her caregiving burden can be even higher. Cultural values affect both life and coping ways of caregivers. It should be kept in mind that family caregivers need support from health professionals whatever their occupations are. Support to caregivers plays an important role in their coping.

Access source material through DOI

Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families

Background: Advance care planning (ACP) facilitates identification and documentation of patients' treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers. Methods: This is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants' experiences and attitudes about ACP. Qualitative content analysis was adopted to analyze both manifest content and latent content. Results: A total of 17 patients and 13 family caregivers participated in our study. The qualitative analysis identified four barriers to ACP: 1) limited patients' participation in autonomous decision making, 2) cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early discussion, and 4) unprepared healthcare professionals and healthcare system. Conclusions: Participations of seriously ill patients, family caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers. 

Access source material through DOI

An autoethnography of death and dying in Northern Ireland: Managing Community Care

Purpose In Northern Ireland, access to good quality palliative care is an accepted and expected part of modern cancer care. The “Transforming Your Palliative and End of Life Care” programme “supports the design and delivery of coordinated services to enable people with palliative and end of life care needs to have choice in their place of care, greater access to services and improved outcomes at the end of their lives”. The purpose of this autoethnography is to share the author’s lived experience so that it might be used to improve services. Design/methodology/approach Autoethnography is employed as the research method. The author describes her experience of caring for father over the last six months of his life. She explores the tensions between the different players involved in the care of her father and the family and the internal conflict that developed within her as daughter, carer, care coordinator and doctor. Using multiple data sources, selected data entries were explored through reflexive, dyadic interviews to explore the experience and meaning in each story. Findings The author found that autoethnography was a powerful tool to give voice to the carer experience. Narration can be a powerful tool for capturing the authentic lived experiences of individuals and families and is a tool seldom utilised in integrated care. This account provides an insight into the author's expectations of integrated palliative care, as a designer and implementer and now an academic in integrated care and concludes with some reflections about the gap between policy and practice in palliative care services in Northern Ireland. Originality/value Autoethnography can be a powerful tool for capturing the authentic lived experiences of individuals and families and is an essential component of the quadruple aim.

Access source material through DOI

Attitudes of Professional Caregivers and Family Members Regarding the Use of Monitoring Devices to Improve Assessments of Pain and Discomfort During Continuous Sedation Until Death

Context: Assessing consciousness and pain during continuous sedation until death (CSD) by behavior-based observational scales alone has recently been put into question. Instead, the use of monitoring technology has been suggested to make more objective and reliable assessments. Insights into which factors influence attitudes toward using these monitoring devices in a context of CSD is a first step in formulating recommendations to inform future practice. Objectives: The aim of this study was to find out what influences professional caregivers' and family members' (FMs) attitudes regarding the use of monitors during CSD. Methods: We conducted semistructured face-to-face interviews with 20 professional caregivers and 15 FMs, who cared for a patient or had an FM, respectively, who took part in a study using monitoring devices. Recruitment took place in an academic hospital, a locoregional hospital, and two nursing homes, all located in Belgium. Two researchers independently analyzed the data, using grounded theory to inductively develop a model that represents the emerging attitude toward use of monitors during CSD. Results: Our model shows that the emerging attitudes toward using monitors during CSD is determined by view on CSD, desire for peace of mind, emotional valence attached to using monitors, and the realization that the sole use of behavior-based observational measures could be unreliable in a CSD context. We identified several facilitators and barriers to inform future implementation strategies. Conclusion: Most participants had no objections, and all participants found the use of monitoring devices during CSD feasible and acceptable. We identified a number of facilitators and barriers and suggested that being aware that care can be improved, good communication, shared decision making, and continuing professional education can overcome the identified barriers. We suggest future research would focus on developing implementation strategies and guidelines for introducing objective monitoring devices in diverse palliative care settings. 

Access source material through DOI

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods: Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

Access source material through DOI

Essential Family Caregivers in Long-Term Care During the COVID-19 Pandemic

Four decades ago, my parents were not permitted to hold their dying infant because they were “visitors” to the intensive care unit. I learned from them that our health care policies sometimes carry huge human costs. As a geriatrician and medical director of a long-term care (LTC) facility, I have learned that family members are not merely visitors; family members are critical partners in our care. The practice of social distancing and physical separation is important to keep our residents in LTC facilities safe in the COVID-19 pandemic, but the time has come to revise our policies allowing family presence at the bedside of loved ones....

Access source material through DOI

The alleviation of suffering during the COVID-19 pandemic

During the current global public health emergency, clinicians may likely struggle to meet the psychological, spiritual, social, and emotional needs of patients and family caregivers. [...]the burnout and existential distress experienced by healthcare professionals worldwide prior to COVID-19 will likely increase significantly amid the current pandemic (National Academies of Sciences, Engineering, and Medicine, 2019; Parks, 2020; Pessin et al., 2015). Responding to suffering during COVID COVID-19 is magnifying a collective fear and anxiety about impending destruction, as mortality rates rise steadily and we learn more about healthcare system capacity constraints, the possibilities of resource rationing and blanket do-not-resuscitate orders, and low survival rates linked to advanced stages of COVID-19. The clinical progression of COVID-19 for many patients has escalated so quickly there has been little time for patients or family caregivers to discuss the reality of the disease, adjust to the caregiving role, clarify goals of care, or create a legacy as life ends. Given the unique, high-risk vulnerabilities of seriously ill patients and those at the end of life who are COVID-19 positive, many palliative care organizations are guiding clinicians to employ presence, use deep listening skills, and promote cultures of professionalism and calm in interactions with patients, families, and colleagues (CAPC, www.capc.org; End-of-Life Nursing Educational Consortium, ELNEC, www.aacnnursing.org/ELNEC; National Hospice and Palliative Care Organization, NHPCO, www.nhpc.org; VitalTalk.org, www.vitaltalk.org).

Access source material through DOI

After providing end of life care to relatives, what care options do family caregivers prefer for themselves?

Objectives: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care. Methods: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care. Results: In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL. Conclusion: Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia. [

Access source material through DOI

Advance care planning information intervention for persons with mild dementia and their family caregivers: Impact on end-of-life care decision conflicts

Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest–posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p =.008 and p <.001, respectively), knowledge of ACP (both p <.001), and significant reductions in decisional conflicts (both p <.001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p =.001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care. 

Access source material through DOI

Adapting a Palliative Care Literacy Intervention for Use in Israel (GP787)

Objectives Describe growth of palliative care in Israel and the need to increased palliative care literacy among patients and family caregivers. Describe the process of adapting the Managing Cancer Care intervention for use in Israel. Summarize recommended expert panel, patient, and family caregiver edits to the Managing Cancer Care intervention. Importance. Although palliative care (PC) is growing in Israel, few receive PC due to lack of knowledge and availability of services. Increased PC literacy and use is needed to improve health outcomes. Objective(s). Adapt a PC-focused cancer self-management intervention to improve PC literacy and use in Israel. Method(s). Managing Cancer Care (MCC) consists of two interventions, MCC-PTfor patients and MCCCGfor family caregivers. Both have improved knowledge of PC and its integration into cancer self-management among users in Connecticut. To adapt MCC for use in Israel, we professionally translated MCC from English to Hebrew. An expert panel of Israeli clinicians (n¼3) edited modules for cultural relevance. We conducted cognitive interviews with patients and family caregivers at an oncology center in northern Israel to inform further edits. Inclusion criteria were patients and family caregivers managing Stage III/IV breast cancer, aged 18+, Hebrew- or English-speaking, and receiving any type of treatment. Participants provided demographic/clinical information and received the appropriate version of MCC. Interviews on intervention content and format occurred 2-4 weeks later. We analyzed interview data using content analysis. Results. Following expert review, we revised MCC content specific to the U.S. health care system (e.g., hospice benefit) and American culture/language (e.g., no Hebrew word for ''multidisciplinary''). Patients' (n¼13) mean age was 49 (range 36-69). 85% had Stage IV disease with an average 6 years since diagnosis. Caregivers' (n¼10) mean age was 57 (range 47-66) with 60% male. 23% of patients and 30% of caregivers correctly defined PC. 30% of patients had seen a PC physician. MCC was reported by patients and caregivers as topically relevant (80%,70%), attractive (70%,80%), and culturally appropriate, and suggested more Israel-specific content on PC resources. Conclusion(s). MCC appears acceptable to Israeli users and warrants pilot-testing. Impact. PC infrastructure in Israel may grow in response to increased PC literacy and requests for PC. We are collaborating with Israel's Ministry of Health to further study objectives.

Access source material through DOI

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

Background: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. 'Family' caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding 'who' caregivers are in this context and what their experiences may be. Aim: To describe family caregiving in the context of structural vulnerability, to understand who these caregivers are, and the unique challenges, burdens and barriers they face. Design: Critical ethnography. Setting/participants: Twenty-five family caregivers participated. Observational fieldnotes and semi-structured interviews were conducted in home, shelter, transitional housing, clinic, hospital, palliative care unit, community-based service centre and outdoor settings. Results: Family caregivers were found to be living within the constraints of structural vulnerability themselves, with almost half being street family or friends. The type of care provided varied greatly and included tasks associated with meeting the needs of basic survival (e.g. finding food and shelter). Thematic analysis revealed three core themes regarding experiences: Caregiving in the context of (1) poverty and substance use; (2) housing instability and (3) challenging relationships. Conclusion: Findings offer novel insight into the experiences of family caregiving in the context of structural vulnerability. Engaging with family caregivers emerged as a missing and necessary palliative care practice, confirming the need to re-evaluate palliative care models and acknowledge issues of trust to create culturally relevant approaches for successful interventions. More research examining how 'family' is defined in this context is needed.

Access source material through DOI

Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers' experiences in metastatic melanoma

Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. Aim: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods. Setting/participants: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres. Results: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life. Conclusion: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.

Access source material through DOI

Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members

Purpose: Little has been determined regarding the association between patients’ and families’ illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers. Methods: Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results. Results: Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients’ illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC. Conclusion: Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers. 

Access source material through DOI

Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively

Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. Methods: This transversal study was conducted in a tertiary private teaching hospital, in Saõ Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. Results: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services. 

Access source material through DOI

Ethical challenges in family caregivers of patients with advanced cancer - A qualitative study

Background: Caring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC's perspective. Methods: Within a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide. Data were analysed using grounded theory and abductive reasoning. Results: Core phenomena identified were two paths connected to ethical challenges among FC. Ethical challenges occurred in the context of difficult decision-making (Path 1) and in the context of lacking decision-making options when no decision was to be made by FC (Path 2). We found each path to be triggered by distinct sets of morally troubling situations that occurred during the patient's disease trajectory. In the course of difficult decision-making (Path 1), detrimental external factors could add emotional stress, thus making the decision-making process burdensome. FC used various proactive strategies to overcome those detrimental factors and/or to make the decision. Decisions in conflict with FCs' own moral expectations and values led to moral distress, generating painful emotions. When no decision was to be made by FC (Path 2), FC felt powerless and overrun, which was associated with major emotionality in terms of anxiety and confusion. Either detrimental factors aggravated these feelings to paralyzing shock, or internal resources enabled FC to accept the situation. While acceptance prevented moral distress, paralyzing shock often caused a sense of not meeting their their own moral expectations and values, resulting in moral distress. In both paths, factors were identified that helped FC finding closure and prevented moral residue. Nevertheless, some FC experienced residual moral distress months after the morally troubling situation had occurred. Conclusion: Findings provide first information towards understanding paths leading to ethical challenges in FC and can help clinicians to minimize associated emotional burden and moral distress. 

Access source material through DOI

Understanding family caregivers' needs to support relatives with advanced progressive disease at home: An ethnographic study in rural Portugal

Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers' physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs. 

Access source material through DOI

Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

Background: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet. Methods: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. Results: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. Conclusions: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia. Trial registration: Clinicaltrial.gov, NCT03548142. Retrospectively registered 7 June 2018. 

Access source material through DOI

Dying at home of cancer: Whose needs are being met? the experience of family carers and healthcare professionals (a multiperspective qualitative study)

Objectives Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: 'How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)? Methods A qualitative approach, using multiperspective interviews with bereaved family carers (n=15) and a nominated HCP (n=13) ensured depth of insight gained into supporting a home death. The semistructured interviews were audio recorded, transcribed verbatim and analysed using Framework. Results We found that the home environment enabled normality, a sense of control and individualised care which family carers often perceived as contributing towards a good death. However, the home environment created challenges for both family carers and HCPs, due to the differing and at times conflicting needs of the dying person and their family carers. Conclusions We have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life. 

Access source material through DOI

Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT

BACKGROUND: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. OBJECTIVES: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. DESIGN: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. SETTING: Home-based care without 24/7 paid care provision, in three UK sites. PARTICIPANTS: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. INTERVENTION: Intervention-group carers received training by local nurses using a manualised training package. MAIN OUTCOME MEASURES: Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. RESULTS: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. CONCLUSION: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN11211024. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology A sessment; Vol. 24, No. 25. See the NIHR Journals Library website for further project information

Access source material through DOI

Massive Open Online Courses: enhancing caregiver education and support about dementia care towards and at end of life

As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support. 

Access source material through DOI

Attitudes toward advance care planning among persons with dementia and their caregivers

Objectives: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. Design: Cross-sectional survey.Setting: 13 geographically dispersed Alzheimer's Disease Centers across the United States.Participants: 431 racially diverse caregivers of persons with dementia. Measurements: Survey on Care Planning for Individuals with Dementia. Results: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. Conclusions: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP. 

Access source material through DOI

Spiritual Dimension at the End of Life: A Phenomenological Study from the Caregiver’s Perspective

The lives of healthy and sick people are structured according to a variety of conceptual matrices. One of these matrixes consists of philosophical, spiritual, and religious convictions, being this especially relevant in the process of the end of life. The objective of the study is to understand the meaning that individuals at the end of life and the relatives of such individuals award spiritual and/or religious beliefs through an examination of caregiver narratives. Multicentric study was developed that used a qualitative design and a phenomenological approach. The study was conducted in the autonomous community of Andalusia, specifically in the provinces of Almeria, Malaga, Seville, Granada, and Huelva. The selection method was purposive sampling. Caregivers who had lost a relative in a period between 2 months and 2 years previously and who were not in a process of pathological grieving were selected for inclusion in the study. The method involved five discussion groups and 41 in-depth interviews, with a total of 87 participants. A change of paradigms is necessary in which, among other elements, the focus of palliative care is centered on the ability to address these spiritual needs, and healthcare professionals are trained to assist in the provision of such care. Another important consideration is the inequality of spiritual supported provided by clergy from various religions. At least in the cultural context of the research, Catholic chaplains were the only institutional figures whose presence was assumed necessary by health organizations. However, the cultural and/or religious diversity in the autonomous community in which the study was conducted is increasingly broad and complex. It appears necessary to incorporate a variety of clergies in health units so that all patients may find support, whether in terms of companionship or celebration. 

Access source material through DOI

Palliative Caregivers’ Spirituality, Views About Spiritual Care, and Associations With Spiritual Well-Being: A Mixed Methods Study

Background: Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the sacred or important and may support caregiver well-being. Aim: To examine caregivers’ spirituality, religiosity, spiritual well-being, and views on spiritual/religious support. Design: A mixed-methods study across 4 Australian sites, recruiting caregivers of patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team developed and adapted questions examining religion/spirituality’s role and support and views on hospitals supporting spiritual/religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). Results: One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores (P <.001). Spirituality was very important to 24.5%, religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed (P =.005) and meditated (P =.006) more following patients’ diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being (P <.001). Hospitals supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them (n = 32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in supporting spiritual care. Conclusions: Hospital-based spiritual care providers should seek to identify those who seek pastoral or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist requirements of the caregiver community are met. 

Access source material through DOI

Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Wha Older person's Palliative Care Model

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person's Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.

Access source material through DOI

Communicative Care in Online Forums: How Burdened Informal Caregivers Seek Mediated Social Support

Health care in aging societies increasingly demands that relatives, partners, or friends provide informal care for loved ones at their end of life. Yet, being an informal caregiver involves significant health threats caused by so-called caregiver burden. To cope with the broad spectrum of challenges, informal caregivers seek social support in the care relationship network emerging around a (future) patient. However, obtaining social support is not limited to offline contexts. Members of online communities also provide experiential knowledge and social support. To explore how informal caregivers seek and provide social support online and how this is interrelated with their care relationship networks, we conducted a qualitative content analysis of 75 threads about advance care planning from German online forums (2003-2017). Our findings show that informal caregivers rely on what we conclusively coined communicative care (i.e., informational and emotional support in burdensome care situations), often in response to impaired offline relationships within care relationship networks.

Original source (some source materials require subscription or permission to access)

The Lived Experiences of Family Caregivers of Persons Dying in Home Hospice: Support, Advocacy, and Information Urgently Needed

Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.

Access source material through DOI

Carer experience of end-of-life service provision: a social network analysis

Objective To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. Methods Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews. Results Service providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system. However, formal service providers were positioned as marginal in the caring network. Analysis of the relative density of relationships within networks showed that whereas relationships among family and friends had similar density, relationships between service providers and family or friends were significantly lower. Conclusion The results supported the Circles of Care model and mirror the perspective of formal service providers identified in previous research. The research raises questions about how formal and informal networks might be better integrated to increase their effectiveness for supporting in-home care. 

Access source material through DOI

How short is too short? A randomised controlled trial evaluating short-term existential behavioural therapy for informal caregivers of palliative patients

Background: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg’s (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy). Aim: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control. Design: Randomised controlled trial. Setting/participants: Informal caregivers of palliative in-patients. Methods: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock’s Health Belief Model. Results: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial. Conclusion: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers’ psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.

Access source material through DOI

Development of a German version of the Carer Support Needs Assessment Tool (CSNAT): The process of translation and cultural adaptation

Objective The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity. Method A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis. Results The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called KOMMA was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers' needs at the cost of the patients. Significance of results A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.

Access source material through DOI

Experiences of spouses of patients with cancer from the notification of palliative chemotherapy discontinuation to bereavement: A qualitative study

Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement. Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach. Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“ Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers. 

Access source material through DOI

An Environmental Scan of Caregiver Support Resources Provided by Hospice Organizations

Background: Informal caregiver support programs offered by hospice organizations support the health and wellbeing of clients and caregivers. However, an understanding of the best practices for informal caregiver support programs currently undertaken across Canada remains unknown, particularly across the province of British Columbia. Aim: The aim of the present study was to describe what existing resources and supports are provided by hospice organizations for informal caregivers of persons who are nearing end of life or who are recently bereaved in British Columbia, Canada. Methods: In this descriptive study, two thirds of hospice organizations (N = 42/66; 26 urban, 16 rural) participated in a semi-structured telephone interview focused on informal caregiver support programs. All interviews were recorded, transcribed and analyzed thematically and descriptive statistics were employed. Findings: While no one-size-fit-all caregiver support program emerged as a gold standard across all hospice organizations, nearly two thirds (n = 26/42) offered one or more informal caregiver support programs. Four categories of caregiver support programs emerged from the data analysis, including companioning, bereavement and grief supports, education and service supports, and respite for caregivers. Conclusion: Caregiver support programs are a valuable service provided by some but not all hospice organizations across British Columbia, Canada. Future studies are needed to determine best methods for hospice organizations to formally assess caregivers’ needs and to determine the success and effectiveness of such programs in support of program expansion and evaluation.

Access source material through DOI

Equity and the financial costs of informal caregiving in palliative care: A critical debate

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving. 

Access source material through DOI

Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers

Background: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.

Access source material through DOI

The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change. 

Access source material through DOI

Informal caregiver quality of life in a palliative oncology population

Purpose: Many patients with advanced cancer receive primary supports from informal caregivers (IC). As patient health deteriorates, IC assume increasing responsibility, often accompanied by distress. We investigated the quality of life (QOL) of IC of patients referred to a palliative radiotherapy (PRT) program. Methods: IC accompanying patients to a dedicated PRT clinic completed a survey based on the validated Caregiver Quality of Life Index-Cancer (CQOLC). Demographics, burden, and engagement in support services were evaluated. Summary statistics were calculated, and parameters were assessed for association with CQOLC scores by a generalized linear model. Results: Two hundred one surveys were analyzed representing 197 unique patients. The mean age was 68.3 years, with predominantly lung (25.0%) and prostate (19.3%) malignancies. 24.4% had been in hospital/long-term care within the previous 7 days. IC were 60.8% female, and 60.6% were the patient’s spouse. 69.5% lived with the patient and 38.3% were additionally employed. IC spent a daily mean of 6.6 h (SD 7) assisting with instrumental (72.5%) and basic (37.5%) activities of daily living. Mean CQOLC score was 82.1/140 (SD 20). 63.8% of IC had previously accessed support service(s), most commonly home care (37.2%) and pharmacy (29.1%). 55.9% indicated interest in services not yet accessed. Multivariate analysis revealed additional employment, cohabitation, poor patient performance status, and interest in accessing more support services significantly correlated with higher IC burden. Conclusions: Employing the CQOLC to screen IC of patients referred to a PRT program permits early identification of vulnerable IC to facilitate linkage with appropriate supports.

Access source material through DOI

Exploring a new model of end-of-life care for older people that operates in the space between the life world and the healthcare system: a qualitative case study

BACKGROUND: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people. METHODS: A multiple exploratory qualitative case study research strategy. Cases were three sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at two time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases. RESULTS: Twenty-three service users and five informal carers participated in individual interviews across the cases. Two focus groups were held with an additional twelve participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were 'outsiders,' the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health. CONCLUSION: These end-of-life care service models operated in a space between the healthcare system and the person's life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact. 

Access source material through DOI

Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial

Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018. Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention. Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving. Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient's spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0). Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes. Trial Registration: ClinicalTrials.gov Identifier: NCT02505425.

Access source material through DOI

Design and Preliminary Testing of the Caregiver-Centered Communication Questionnaire (CCCQ)

The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items. We administered the modified questionnaire to 115 family caregivers of patients with serious illness in various settings. Cronbach α for the entire scale was 0.97 and ranged from 0.82 to 0.93 for the 5 subscales. Participants found that the survey addressed important concepts and that items were in most cases easy to understand. This instrument provides a structured way to assess caregiver-centered communication, addressing a pressing need for tools that measure the extent to which communication is responsive to the needs and preferences of family caregivers. Further testing and refinement are needed to improve the ease of use and examine the reliability and validity of this measure.

Access source material through DOI

Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.

Access source material through DOI

Family Caregivers’ Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges

The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving. 

Access source material through DOI

Does the experience of caring for a severely disabled relative impact advance care planning? A qualitative study of caregivers of disabled patients

The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, and expectation about disease progress; (2) Impact of care on family members: positive affirmation, open-minded life, social isolation and health effects, and financial and life planning effects; (3) Attitude toward life: not forcing to stay, and not becoming a burden, (4) Expected proxy dilemmas: torment between doing or not, seeing the extension of suffering and toil, and remorse and self-blame; (5) Expectation of end of life (EOL) care: caregiver’s experience and EOL care decisions, and practicality of EOL decision making. After making multiple medical decisions for their disabled relatives, caregivers are able to calmly face their own medical decisions, and “not becoming a burden” is their primary consideration. It’s suggested that implementation of shared decision-making on medical care for patients with chronic disability will not only improve the quality of their medical care but also reduce the development of remorse and guilty feelings of caregivers after making medical decisions. 

Access source material through DOI

Caregivers of patients with hematological malignancies within home care: A phenomenological study

The role of caregivers in homecare settings is relevant to the patient’s wellbeing and quality of life. This phenomenon is well described in the literature for the oncological setting but not specifically for that of hematological malignancies. The aim of this study was to explore the experience of primary caregivers of patients with hematological malignancies within home care. We conducted a phenomenological study based on interviews with 17 primary caregivers of hematological patients. Analysis of the contents led to the identification of five main themes. Perhaps, the innovative aspects of this study can be summarized in three points: This service was demonstrated to fulfil the ethical aspects of providing the patient with a dignified accompaniment to the end of life. Secondly, the efficiency of the service and the benefit are directly dependent on the caregivers’ wellbeing, so knowledge of the dynamics and emotions involved can lead to the development and implementation of programs for hematological malignancies. Lastly, a collaborative caregivers–professionals relationship can improve a sense of accomplishment for all parties involved, lessening the family’s frustration related to not having done their best. Home care brings significant benefits for both the patient and the caregivers and fulfils the ethical obligation of providing the patient dignified end-of-life care. 

Access source material through DOI

Profiles of family caregivers of patients at the end of life at home: A Q-methodological study into family caregiver' support needs

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support. 

Access source material through DOI

The effectiveness of a nurse‐led intervention to support family caregivers in end‐of‐life care: Study protocol for a cluster randomized controlled trial

Aim To evaluate the feasibility of a structured nurse‐led supportive intervention and its effects on family caregivers in end‐of‐life care at home.Background Family caregivers are crucial in end‐of‐life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers’ burden and improve preparedness. However, few nurse‐led interventions are available to support family caregivers in end‐of‐life care at home. Design We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group. Methods The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self‐Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019. Impact Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end‐of‐life care. Trial registration The Netherlands Trial Register (NL7702)

Access source material through DOI

Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers

Background The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. Methods The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. Results Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. Conclusions The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

Access source material through DOI

Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention

Background Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. Discussion This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.

Access source material through DOI

Unmet needs of patients with cancer in their last year of life as described by caregivers in a developing world setting: a qualitative study

Background: Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services. Methods: A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes. Results: Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal. Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers' attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer. Conclusion: There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources. 

Access source material through DOI

Their Last Breath: Death and Dying in a Hmong American Community

Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.

Access source material through DOI

Separation characterized by responsibility and guilt: Family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities

Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust. 

Access source material through DOI

Regrets of family caregivers in Israel about the end of life of deceased relatives

Objective: We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage. Method: Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data. Results: A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care. Conclusion: This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.

Access source material through DOI

Online social support groups for informal caregivers of hospice patients with cancer

Purpose: Social support is an important factor in reducing caregiver burden, however, accessing social support via traditional means is often challenging for family caregivers of hospice patients. Online support groups may offer an effective solution. The present study sought to understand dynamics of online social support among family and other informal (e.g., friends) caregivers of hospice cancer patients in an online social support group. The primary aim of the study was to identify types of online social support and support-seeking behaviors, with a secondary aim to understand informal hospice caregivers’ preferences for social support. Method: Data used in this study were collected as part of a federally funded randomized clinical trial of an informal hospice cancer caregiver support intervention. Findings are based on directed and conventional content analysis of support group members' posts and comments—including text and images—and a sample of caregivers’ exit interviews. Results: Analyses demonstrated that the majority of online support provided by group members was emotional support, followed by companionship support, appraisal support, and informational support. Instrumental support was rarely provided. Support was primarily elicited in an indirect manner through self-disclosure and patient updates, with few overt requests for support. Conclusions: Findings suggest online social support groups can be a valuable resource for informal caregivers who are in need of emotional support and lack the ability to access face-to-face support groups. Clinical implications of this research to healthcare systems regarding the importance of incorporating nurses and other medical professionals as co-facilitators of online support groups are discussed. 

Access source material through DOI

Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

Introduction: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.; Objective: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.; Design: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.; Setting: A hospice in the North East of England, operating in the community, through volunteers.; Participants: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).; Results: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.; Conclusions: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.

Access source material through DOI

Mindfulness Training Supports Quality of Life and Advance Care Planning in Adults With Metastatic Cancer and Their Caregivers: Results of a Pilot Study

Background: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP.; Aim: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs.; Design: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3).; Participants: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States.; Results: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3.; Conclusions: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).

Access source material through DOI

Elements of Social Convoy Theory in Mobile Health for Palliative Care: Scoping Review

Background: Mobile health (mHealth) provides a unique modality for improving access to and awareness of palliative care among patients, families, and caregivers from diverse backgrounds. Some mHealth palliative care apps exist, both commercially available and established by academic researchers. However, the elements of family support and family caregiving tools offered by these early apps is unknown.; Objective: The objective of this scoping review was to use social convoy theory to describe the inclusion and functionality of family, social relationships, and caregivers in palliative care mobile apps.; Methods: Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines, a systematic search of palliative care mHealth included (1) research-based mobile apps identified from academic searches published between January 1, 2010, and March 31, 2019 and (2) commercially available apps for app stores in April 2019. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria. Abstracted data covered app name, research team or developer, palliative care element, target audience, and features for family support and caregiving functionality as defined by social convoy theory.; Results: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified. Commercially available apps were most commonly designed for both patients and social convoys, whereas the majority of research apps were designed for patient use only.; Conclusions: Results suggest there is an emerging presence of apps for patients and social convoys receiving palliative care; however, there are many needs for developers and researchers to address in the future. Although palliative care mHealth is a growing field, additional research is needed for apps that embrace a team approach to information sharing, target family- and caregiver-specific issues, promote access to palliative care, and are comprehensive of palliative needs.

Access source material through DOI

Determining the Effect of Group Flower Arranging Sessions on Caregiver Self-Efficacy and Stress Levels in an In-Patient Hospice

This study was designed to promote enhanced self-efficacy and decreased stress levels for family caregivers at a hospice care hospital, thus increasing their quality of life. This is achieved through group flower arranging sessions. The objectives are to (a) enhance self-efficacy scores for family caregivers of Calvary patients, (b) decrease stress levels for family caregivers of Calvary patients, and (c) disseminate results to other hospices. The results show that the flower arranging sessions resulted in significantly increased self-efficacy and decreased stress and associated problems for the caregiver participants. Implications and suggestions for future research are discussed. 

Access source material through DOI

Confessions of a Reluctant Caregiver Palliative Educational Program: Using Readers' Theater to Teach End-of-Life Communication in Undergraduate Medical Education

End-of-life care can be stressful for patients, caregivers, and providers. Caregivers often experience high levels of burden from caregiving duties such as performing medical tasks, communicating with providers, and making decisions. Similarly, many physicians feel unprepared to provide end-of-life care or communicate with patients and families about sensitive issues associated with death and dying. Physicians often attribute their lack of preparation to inadequate training in medical school. Previous research suggests that drama-based learning opportunities are valuable supplements to existing end-of-life curricula. The current study evaluates the success of the Confessions of a Reluctant Caregiver Palliative Educational Program - a drama-based educational program that depicts patient and caregiver experiences. A total of 477 osteopathic medical students participated in the program, which includes viewing a play, engaging in a facilitated post-performance talkback session, and completing an evaluation survey. The results suggest the program is a valuable learning experience that is positively associated with important facets of experiential learning using narratives such as perceived realism, increased reflection, strong emotions, and increased comfort with difficult behaviors. The program offers a safe environment for medical students to identify, understand, and process the sensitive and complex issues associated with end-of-life care. Moreover, the play offers insight into the often-overlooked experiences of family caregivers who are at risk of experiencing high caregiver burden while managing health-related communication and decision-making.

Access source material through DOI

Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States.; Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care.; Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice.; Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

Access source material through DOI

Deactivating a Pacemaker in Home Care Hospice: Experiences of the Family Caregivers of a Terminally Ill Patient

Objectives: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers. Aim: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data. Participants: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member’s pacemaker. Results: Four storylines that described, gave meaning to, and contextualized the caregivers’ experiences were identified: “I am done. I am not doing it anymore”; “Whatever you decide, I’ll support you”; “It is really difficult to watch, but you want to be there”; and “I will not have part of this.” Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process. Conclusions: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians’ knowledge regarding caregivers’ experiences facing deactivation of a pacemaker, before and after the patient’s death. 

Access source material through DOI

When Death With Dementia Is "A Memory Seared in My Brain": Caregivers' Recommendations to Health Care Professionals

The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.

Access source material through DOI

What information and resources do carers require pre and post bereavement in the acute hospital setting? A rapid review

Purpose Of Review: This mixed-method, rapid review of published research from 2014 to 2019 aims to explore the experiences of pre and postbereaved carers, and the information that they receive in the acute hospital setting. The quality of articles was evaluated using a standardized quality matrix. The techniques of conceptual analysis and idea mapping were used to create a structured synthesis of the findings.; Recent Findings: From the initial search of 432 articles, ten studies met the inclusion criteria for this review. These studies generated data from 42 patients, 1968 family/carers and 139 healthcare staff. Themes that were generated from a synthesis of the included articles were clear and timely communication, workforce provision and environment.; Summary: This review has highlighted the need for improvements in information provision for carers as part of end of life care. Furthermore, the need for specific staff education and training to enable staff to confidently communicate with dying patients and their relatives in the acute setting is also warranted. Understanding and addressing gaps in knowledge and practice are essential to develop strategies in this complex area. Simple strategies can be implemented to improve the care of carers both pre and post bereavement in acute care.

Access source material through DOI

Uncertainty in illness in family caregivers of palliative care patients and associated factors

Objective: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty.; Method: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations.; Results: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050).; Conclusions: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.

Access source material through DOI

Translation and Validation of the 10-Item FAMCARE Scale to Assess Satisfaction of Family Caregivers With Care Given to Cancer Patients

Context: Family satisfaction with care is an important quality indicator in palliative care.; Objectives: This study aimed to translate and validate the 10-item Family Satisfaction with End-of-Life Care (FAMCARE) tool.; Methods: Family caregivers of patients with advanced cancer were recruited. FAMCARE was translated from English to Chinese using a forward and backward translation process. Chinese-speaking caregivers were interviewed with the preliminary Chinese FAMCARE, and phrasing was edited to ensure clarity of the items. Subsequently, a baseline and follow-up survey in English and the finalized Chinese version were performed to assess psychometric properties. Cronbach's alpha (α) and intraclass correlation coefficient were used for internal consistency and test-retest reliability, respectively. Validity was assessed with Spearman's correlation coefficient (r). The Comprehensive Needs Assessment Tool-Caregiver (CNAT-C) and a one-item assessment by caregivers regarding "good-care" acted as a validity criterion. Pooled analysis of both languages and language-specific analyses were performed.; Results: There were 259 participants; 134 and 125 participants filled in the English and Chinese versions, respectively. Pooled analysis showed that the intraclass correlation coefficient of FAMCARE was 0.95; α was 0.91. There was a moderate positive correlation between the total FAMCARE scores and "good-care" (r = 0.54) and a moderate negative correlation between the total FAMCARE score and the CNAT-C "Healthcare Staff" domain (r = 0.41). There was a weak negative correlation between the total FAMCARE score and the CNAT-C domain of "family and social support" (r = -0.13). Language-specific analyses revealed similar results regarding FAMCARE's psychometric properties.; Conclusion: FAMCARE showed good reliability and validity.

Access source material through DOI

Telemedically augmented palliative care : Empowerment for patients with advanced cancer and their family caregivers

Background: Studies have shown that initiating early palliative care of patients with end-stage cancer can improve their quality of life and decrease symptoms of depression. The challenge is to find an effective way to care for these patients while minimizing the burden on healthcare resources. Telemedicine can play a vital role in solving this problem.; Methods: A user-friendly telemedical device enabling patients encountering medical problems to send a direct request to a palliative care team was developed. A controlled feasibility study was conducted by assigning 15 patients with advanced cancer and their family caregivers to receive either standard palliative care or telemedically augmented palliative care. Th quality of life (QoL) was assessed using standardized validated questionnaires as well as frequency and duration of hospital admissions and user satisfaction. The primary goal of this study was to increase the QoL of patients and their family caregivers. The secondary goal of this study was to decrease the frequency and duration of hospital admissions.; Results: This study showed a good feasibility despite the low overall willingness to participate in a relatively "technical" trial. The hospital anxiety and depression scale (HADS) was significantly lower in the intervention group, suggesting an improved quality of life. Although a decrease in the number of hospital admissions could not be shown, the user satisfaction was very good.; Conclusion: Telemedicine could be a useful tool to enhance the general well-being of palliative oncology patients. Now that the feasibility of this approach has been confirmed, larger studies are needed to verify its positive impact on the QoL.

Access source material through DOI

Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care

Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.; Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.; Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.; Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.

Access source material through DOI

Prevalence and Predictors of Distress, Anxiety, Depression, and Quality of Life in Bereaved Family Caregivers of Patients With Advanced Cancer

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

Access source material through DOI

A Linguistic Model of Communication Types in Palliative Medicine: Effects of Multidrug-Resistant Organisms Colonization or Infection and Isolation Measures in End of Life on Family Caregivers' Knowledge, Attitude, and Practices

Background: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life. Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted. Design: Fifty interviews with family caregivers were analyzed linguistically. The considered parameters include lexical choices such as evaluative wording, metaphors, and specialized terminology, as well as higher level categories—turn-taking, sentence-length, and personal deixis. These characteristics serve to assess attitudes toward medical staff, hygiene measures, knowledge, and its transfer and general emotional states. Conclusions: Linguistic expertise adds benefits to the classical analysis of language data as used in social sciences. Family caregivers' linguistic and attitudinal profiles vary depending on whether their involvement in the overall situation is active or passive, and whether their relationship toward staff and hospital is cooperative or confrontative. Depending on the four possible combinations of those characteristics, different recommendations for communication strategies on the staff's side can be given. In all cases, clear and patient/family centeredness are considered beneficial.

Access source material through DOI

Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

Access source material through DOI

Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives

Objective: The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.; Method: This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.; Result: Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.; Significance Of Results: To our knowledge, this is the first time that family caregivers' perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

Access source material through DOI

'The Future is Probably Now': Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

Background: Earlier end‐of‐life communication is critical for people with heart failure given the uncertainty and high‐risk of mortality in illness. Despite this, end‐of‐life communication is uncommon in heart failure. Left unaddressed, lack of end‐of‐life discussions can lead to discordant care at the end of life. Objective: This study explores patients' and caregivers' understanding of illness, experiences of uncertainty, and perceptions of end‐of‐life discussions in advanced illness. Design: Interpretive descriptive qualitative study of older adults with heart failure and family caregivers. Fourteen semi‐structured interviews were conducted with 19 participants in Ontario, Canada. Interviews were transcribed verbatim and content analysis was used to analyse the data. Main results: Understanding of illness was shaped by participants' illness‐related experiences (e.g. symptoms, hospitalizations and self‐care routines) and the ability to adapt to challenges of illness. Participants were knowledgeable of heart failure management, and yet, were limited in their understanding of the consequences of illness. Participants adapted to the challenges of illness which appeared to influence their perception of overall health. Uncertainty reflected participants' inability to connect manifestations of heart failure as part of the progression of illness towards the end of life. Most participants had not engaged in prior end‐of‐life discussions. Conclusion: Detailed knowledge of heart failure management does not necessarily translate to an understanding of the consequences of illness. The ability to adapt to illness‐related challenges may delay older adults and family caregivers from engaging in end‐of‐life discussions. Future research is needed to examine the impact of addressing the consequences of illness in facilitating earlier end‐of‐life communication.

Access source material through DOI

Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR): Part 1

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process. A framework for Patient and Informal Caregiver Participation In Research (PAICPAIR) is suggested-creating a stronger foundation for democracy, equality, and research quality by also promoting active participation among vulnerable people experiencing incurable, life-threatening illness, as coresearchers.

Access source material through DOI

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer. Design: Secondary qualitative data analysis. Sample: 58 family caregivers of hospice patients with advanced cancer. Methods: Template analysis of individual family caregiver interviews. Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging. Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.

Access source material through DOI

The experiences of family members witnessing the diminishing drinking of a dying relative: An adapted meta-narrative literature review

Background: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life. Aim: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research. Design: An adapted meta-narrative review approach. Data Sources: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument. Results: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members' experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals. Conclusion: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members' experiences when witnessing the diminishing drinking of a dying relative.

Access source material through DOI

Experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life

Purpose: This study aimed to clarify the experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life. Methods: A semi-structured interview was performed for four family caregivers who wanted to refuse life-prolonging treatment suggested by the physicians. Results: In this study, four caregivers who refused life-prolonging treatment suggested by the physicians for their elderly parents completed semi-structured interviews. The obtained data were analyzed in relation to the theme "Experiences of caregivers who desire to refuse life-prolonging treatment for their elderly parents at the end of life." As a result, 38 subcategories and 12 categories were extracted. Conclusions: Participants in this study initially had a negative view of life-prolonging treatment. However, they agonized over the decision when they received conflicting advice from the physicians. The participants indicated that physicians' advice and attitudes complicated their decisions to reject life-prolonging treatment for their elderly parents.

Access source material through DOI

An examination of Latino-advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study

Objectives: Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.; Methods: Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.; Results: Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.; Significance Of Results: Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

Access source material through DOI

End-of-Life Communication Between Providers and Family Caregivers of Home Hospice Patients in a Rural US-Mexico Border Community: Caregivers' Retrospective Perspectives

Introduction: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition.; Methods: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data.; Results: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care.; Conclusion: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.

Access source material through DOI

Effect of the Integrated Prospective Payment Program on Family Members' Knowledge and Acceptance of Hospice Care of Patients on Prolonged Mechanical Ventilation

Background: We sought to evaluate the effect of an integrated prospective payment program (IPP) on knowledge of hospice care and willingness to participate in hospice care among family members of patients on prolonged mechanical ventilation (PMV).; Methods: Between November 2013 and April 2014, we used paper-based survey questionnaires from 64 institutions to evaluate knowledge, willingness, and related factors among the main caregivers of patients on PMV regarding hospice care and to determine whether their decisions for the patients were affected by the IPP.; Results: The average ages of the respondents and patients on PMV were 51.9 y and 70.8 y respectively; 70.6% of the respondents knew about the Hospice Palliative Care Act (HPCA), and 42.3% of the medical staff had introduced hospice care-related information to patients and caregivers in Taiwan. Among the caregiver respondents, 67.6% agreed to write a letter of intent regarding the choice of hospice care or limited life-sustaining treatment. In total, 66.2% (16.1 + 50.1%) of the respondents agreed to hospice care for their family members (ie, the patients on PMV) when the condition was terminal. The factors of greater HPCA knowledge among the patients on PMV were IPP participation, female sex, and coma status. Factors leading to higher levels of HPCA knowledge included age ≥ 65 y being married, higher income, awareness of the law, and being introduced to hospice care by medical staff.; Conclusions: High levels of hospice care knowledge were unrelated to willingness to participate. HPCA knowledge was greater in the IPP group than in the non-IPP group; however, there was no significant difference in the willingness to agree to hospice care. It is recommended that individuals be encouraged to express their medical decisions.

Access source material through DOI

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers' grief, quality of life and general health in relation to non-caregivers.; Aim: We aimed to determine how caregivers' grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes.; Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points - once pre-death and three times post-death (3-4 months, 6-7 months and 9-10 months).; Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements.; Results: There were significant differences between the caregivers' and comparisons' grief, general health and quality of life at pre-death, 3-4 months and 6-7 months post-death, but not at 9-10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6-7 and 9-10 months post-death.; Conclusion: It took 9-10 months for the caregivers' grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.

Access source material through DOI

Dying in acute hospitals: voices of bereaved relatives

Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.

Access source material through DOI

Development of a family caregiver needs-assessment scale for end-of-life care for senility at home (FADE)

Aim: This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity. Results: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p<0.001). Conclusions: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers’ anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace. 

Access source material through DOI

Development and Implementation of the Family Caregiver Decision Guide

Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG). The Guide entails four steps: thinking about the current caregiving situation, imagining how the caregiving situation may change, exploring available options, and considering best options if caregiving needs change. The FCDG was based on available evidence and was developed and refined using focus groups, cognitive interviewing, and a feasibility and acceptability study. Finally, an interactive version of the Guide was created for online use ( https://www.caregiverdecisionguide.ca ). In this article, we describe the development, evaluation, and utility of the FCDG.

Access source material through DOI

Death attitudes and truth disclosure: A survey of family caregivers of elders with terminal cancer in China

Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers' attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers' inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers' background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers' death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers' attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers' lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers. 

Access source material through DOI

Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective

Background: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. Method: Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. Results: The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. Conclusions: Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.

Access source material through DOI

Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is to identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support. 

Access source material through DOI

Cartography of Factors Influencing Caregivers' Experiences of Loss: A Promising Tool to Help Social Workers Support Caregivers

This article introduces a cartography tool to help social workers work with and support family caregivers. This tool aims to determine (1) which caregivers are likely to need additional support during bereavement and (2) what resources the caregiver has that care teams can rely on for decision-making and planning. The purpose of this article is to present a preliminary assessment of the cartography based on the feedback collected from potential users regarding the tool’s content and usage.

Access source material through DOI

Caregivers in home palliative care: gender, psychological aspects, and patient's functional status as main predictors for their quality of life

Purpose: This study aims to investigate the impact of possible predictors of quality of life (QoL) in a group of Italian caregivers assisting a cancer patient in home palliative care.; Methods: Data from 570 adult informal caregivers and their cancer-affected relatives were collected. A multivariate regression analysis was conducted to assess the effect of three groups of variables on Caregivers Quality of Life Index-Cancer (CQOLC) scale: (a) socio-demographic characteristics of caregivers; (b) psychological characteristics of caregivers assessed by Profile Mood of States (POMS), Caregiver Burden Inventory (CBI), and Preparedness for Caregiving Scale (PCS); (c) Socio-demographic characteristics and functional status of the patients assessed by Karnofsky Performance Status (KPS), Activities of Daily Living (ADL), and Instrumental Activities of Daily Living (IADL).; Results: Regression analysis shows that some variables from each of these clusters are significantly associated with CQOLC, in particular: (a) the gender of the caregiver (st.β = .115, t = 2.765, p = .006) and the time spent for caregiving (st.β = - .165, t = - 3.960, p < .001); (b) the scores obtained by the caregivers in POMS,CBI (st.β = - .523, t = - 16.984, p < .001 and st.β = - .373, t = - 12.950, p < .001, respectively) and PCS (st.β = .092, t = 3.672, p < .001); (c) the gender (st.β = - .081, t = - 1.933, p = .045) and the IADL score (st.β = .195, t = 4.643, p < .001) of the patient.; Conclusions: A multidimensional evaluation is a key strategy to identify the most vulnerable caregivers. Apart from the condition of the patient, the gender of the caregivers, the time spent for caregiving and, above all, their psychological condition are strong predictors of caregivers' QoL.

Access source material through DOI

Cancer as Communal: Understanding Communication and Relationships from the Perspectives of Survivors, Family Caregivers, and Health Care Providers

With cancer increasing in prevalence and high priorities placed on concurrent oncological and palliative care to help meet the familial, spiritual, and individual needs of stakeholders in cancer, research is needed that assesses the factors that facilitate coping across stakeholders in cancer care. We were interested in synthesizing our understanding of communication and relationships among patients, caregivers, and providers based on the reasoning that illness is relational, but often conceptualized and researched from the individual perspectives of various stakeholders. The current study examined the experiences of relational and communication opportunities and challenges during cancer for current and former family caregivers, cancer survivors, and palliative and oncology health care practitioners. The thematic analysis of 30 semi-structured interviews revealed an overarching theme on the benefits of orienting toward cancer as communal, which was, in turn, facilitated or impeded by four additional themes/sets of behaviors: support, presence, perspective-taking, and reframing hope. Results of a cross-case data matrix analysis reveal that stakeholders in different roles experience qualitative differences in their experience of cancer as communal, isolated, or ambivalent. Implications for education, palliative care, and interventions are discussed.

Access source material through DOI

Bereaved Family Cancer Caregivers' Unmet Needs: Measure Development and Validation

Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.

Access source material through DOI

Associations of preloss and postloss factors with severe depressive symptoms and quality of life over the first 2 years of bereavement for family caregivers of terminally ill cancer patients

Background: Family caregivers carry heavy end-of-life (EOL) caregiving burdens, with their physical and psychological well-being threatened from caregiving to bereavement. However, caregiving burden has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear-and-tear vs relief models of bereavement. Objective/Methods Preloss and postloss variables associated with severe depressive symptoms and quality of life (QOL) for 201 terminally ill cancer patients' caregivers over their first 2 years of bereavement were simultaneously evaluated using multivariate hierarchical linear modeling. Severe depressive symptoms (Center for Epidemiological Studies Depression Scale score > 16) and QOL (physical and mental component summaries of the Medical Outcomes Study Short-Form Health Survey) were measured 1, 3, 6, 13, 18, and 24 months postloss. Results: Caregivers' likelihood of severe depressive symptoms and mental health-related QOL improved significantly from the second year and throughout the first 2 years of bereavement, respectively, whereas physical health-related QOL remained steady over time. Higher subjective caregiving burden and postloss concurrent greater social support and better QOL were associated with bereaved caregivers' lower likelihood of severe depressive symptoms. Bereaved caregivers' mental health-related QOL was facilitated and impeded by concurrent greater perceived social support and severe depressive symptoms, respectively. Conclusion: Severe depressive symptoms and mental health-related QOL improved substantially, whereas physical health-related QOL remained steady over the first 2 years of bereavement for cancer patients' caregivers. Timely referrals to adequate bereavement services should be promoted for at-risk bereaved caregivers, thus addressing their support needs and facilitating their bereavement adjustment.

Access source material through DOI

Advance care planning for people with dementia: Ordinary everyday conversations

Advance care planning for people with dementia has become a focus of dementia care policies in developed countries. In New Zealand, the framework for dementia care relies on the person with dementia having a level of competence to enable them to participate in the planning process. For people with dementia, it may be too late to initiate these discussions in terms of decision-making capacity. Consequently, decisions about end-of-life care for people with dementia are typically made by a family member who acts as a surrogate decision maker on behalf of the person with dementia. An exploratory qualitative study of 23 people who had been carers or provided support for a family member with dementia who had died within five years of the interview was undertaken. The overarching theme, 'ordinary everyday conversations', describes how informal conversations and discussions within the family relating to preferences at the end of life had been embedded in interactions within the families over years. Sub-themes revealed three important components enabling adherence to the prior wishes of the person with dementia through these conversations: knowing the person and belief in 'doing the right thing'; the importance of Wills and Enduring Power of Attorney; and negotiating unexpected encounters. There is potential for families to be well prepared for the time when they may need to make decisions for the person with dementia based on ordinary everyday conversation that take place within families and throughout life. This study also suggests that more innovative approaches to making a Will may provide an important vehicle for expressing advanced care wishes.

Access source material through DOI

146 The Lived Experience of Carer Resilience Told by Carer Advocates

Background Established in 2013 this network of volunteer family carers is a national advocacy group that presents a vital opportunity for carers to use their voice to raise awareness of issues affecting families living with dementia in Ireland. The network is facilitated by a dementia specific service provider. These carer advocates wish to present on a piece of qualitative research they have recently conducted on the topic of carer resilience at the advanced stages of caring for a loved one with dementia. Methods There are 43 family carer advocates on the network, all of whom were invited to participate in this research. The piece of qualitative research conducted by the network with its members took the form of a questionnaire. The research sought to ascertain how informed and supported carers felt as their loved ones transitioned to long term residential care and the stage thereafter. This research did not discuss the level of professional care given to their loved one but what supports and services were offered to the carer at that time and how this affected their resilience. The aspect of caring for a loved one availing of hospice care naturally emerged during the research process and this topic was also explored in relation to carer resilience. Completed questionnaires were analysed to show findings and draw conclusions. Results The research gives insight into the lived experience of carer resilience told by carer advocates. The results show that carer advocates feel ill-informed and badly supported as their loved one transitions to or resided in long term residential care. The research also showed that carers feel more informed and supported if their loved one availed of hospice care rather than long term residential care. Conclusion Carers are not properly informed or supported when their loved one transitions to or resides in long term residential care and this negatively affects their resilience.

Access source material through DOI

333 A Transnational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care

Background The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom. Methods The aim of this research is to adapt the application of the FCDS for use in different countries. Funding supported through the EU Joint Programme – Neurodegenerative Disease Research (JPND) project has supported the scaling up of the FCDS transnationally in the United Kingdom; Republic of Ireland; Netherlands; Canada; Czech Republic ; and, Italy. Launched in April 2019, this presentation will report on present activities including: a) description of the FCDS intervention; b) strategy for implementing the FCDS in care homes; c) study design employed for the evaluation of the FCDS; and d) work packages and that will be deployed to achieve intended outcomes Results Expected project outcomes of this work will include a) develop guidelines to facilitate transnational use of the FCDS within care homes; (b) staff education material including web learning resources; (c) family carer informational material including web learning resources; (d) measures and tools to evaluate the uptake and outcome of the FCDS intervention; (e) establish a transnational FCDS community of practice across study care homes; (f) estimated costs of providing the FCDS intervention; (g) evidence of enhancing decision making among family members regarding resident care and satisfaction with care. Conclusion Recent research revealed that care home structures and staff play an important role in the successful implementation and adoption of innovations such as the FCDS intervention, this is further examined in this transnational study. 

Access source material through DOI

Long-term prevalence and predictors of prolonged grief disorder amongst bereaved cancer caregivers: A cohort study

Context The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated. Objectives The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers. Methods A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement. Results At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term. Conclusion For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.

Access source material through DOI

Family Caregivers' Experiences with Dying and Bereavement of Individuals with Motor Neuron Disease in India

Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most of the neurodegenerative conditions are cared for at home. Neuropalliative care is an emerging concept in India and social workers are integral team members in this process. The primary aims of the study were to explore (a) the caregivers' experiences of the end-of-life stage, and (b) the sources of support for individuals and their caregivers with MND at the end-of-life stage. In-depth interviews were conducted with seven bereaved caregivers of individuals with MND from a national tertiary referral care center for neuropsychiatry in South India. Interviews were conducted either in person or by telephone. Thematic analysis was done using the constant comparative method. Major themes derived from the interviews were: (1) Transition from person to patient, (2) support, (3) death, and (4) impact on the caregivers. Mapping of themes identified Support received during advanced stages as the central theme influencing all other themes. The need for a care manager seems evident and is a role that can be effectively fulfilled by the care teams' social workers.

Access source material through DOI

Silent voices: Family caregivers' narratives of involvement in palliative care

Aim To explore how family caregivers experience involvement in palliative care. Design A qualitative design with a narrative approach was used. Methods Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid‐Norway between November 2016–May 2017. Results We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient‐centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow‐up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. Conclusion The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home‐based care.

Access source material through DOI

A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver's opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers' health and well-being.

Access source material through DOI

Reply to: "Informal caregiver quality of life in a palliative oncology population"

To the editor,

We read with interest, the recent article titled, “Informal caregiver quality of life in a palliative oncology population” by Duimering et al. [1], in which the authors concluded that identification of factors relating to lower quality of life (QOL) for informal caregivers, including additional employment, cohabitation with the patient, poor patient performance status, and expressing the wish to provide more assistance, should actuate the healthcare team to identify the vulnerable informal caregivers.

Access source material through DOI

Addressing cancer patient and caregiver role transitions during home hospice nursing care

Objective Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. Method A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. Result Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance. Significance of results Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

Access source material through DOI

Compelling Results That a Problem-Solving Intervention Improves Hospice Family Caregiver Outcomes

This editorial comments on the article: Demiris, G., Oliver, D.P., Washington, K. and Pike, K. (2019), A Problem‐Solving Intervention for Hospice Family Caregivers: A Randomized Clinical Trial. J Am Geriatr Soc, 67: 1345-1352. doi:10.1111/jgs.15894

Hospice researchers Demiris, Parker Oliver, Washington, and Pike should be commended for their recent successful clinical trial evaluating the Problem‐Solving Intervention to Support Caregivers in End‐of‐Life Care Settings (PISCES) intervention, published in this issue of JAGS.8 The 4‐year study fills a substantial gap in the knowledge base by conducting a rigorous randomized trial within the challenging hospice care environment to demonstrate the efficacy of a brief, pragmatic problem‐solving intervention to support informal caregivers.

Access source material through DOI

What do relatives value most in end-of-lie care for people with dementia?

Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.

Access source material through DOI

A Comparison of Rural and Urban Hospice Family Caregivers' Cancer Pain Knowledge and Experience

Context: Family caregivers play a vital role in managing the pain of hospice patients with cancer; however, caregivers' knowledge of pain management principles and experiences as pain managers vary widely. Differences in cultural values and access to resources suggest that rural and urban hospice family caregivers may differ with regard to their pain knowledge and experience, but this has not been empirically investigated. Objectives: We sought to determine if rural and urban hospice family caregivers differed in terms of their knowledge of cancer pain management principles and their experiences managing cancer pain. Methods: Our study consisted of a secondary analysis of baseline, cross-sectional data from hospice family caregivers (N = 196) participating in an ongoing cluster randomized crossover pragmatic trial. We performed multivariable regression to model associations between caregivers' demographic characteristics and their scores on the Family Pain Questionnaire (FPQ), which included subscales measuring pain knowledge and experience. Results: When controlling for other demographic variables, rural caregivers' scores on the FPQ knowledge subscale were worse (P = 0.01) than their urban counterparts. FPQ experience subscale scores and FPQ total scores were not statistically significantly different between the two groups. Conclusion: Rural hospice family caregivers report greater pain knowledge deficits than urban hospice family caregivers, although the two groups report comparable pain management experiences. Additional research is needed to better explain observed differences.

Access source material through DOI

Bereavement risk assessment of family caregivers of patients with cancer: Japanese version of the Bereavement Risk Assessment Tool

Objectives The Bereavement Risk Assessment Tool (BRAT) seems to be useful in identifying those who are likely to suffer from the more severe consequences of bereavement. To date, however, only a few studies have examined bereavement risk using the BRAT. This study investigated bereavement risk in family caregivers of patients with cancer using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). We also investigated the relationship of bereavement risk with psychological distress and resilience among caregivers to determine the validity of the BRAT-J. Methods We conducted family psychoeducation in the palliative care unit of Tohoku University Hospital with participants who were recruited in this study. Among the participants, 50 family caregivers provided their written informed consent and were included in this study. Participants were assessed using the BRAT-J and completed the Japanese version of the Kessler Psychological Distress Scale (K6) and the Tachikawa Resilience Scale (TRS). Results According to the BRAT-J, five individuals (10%) were in the high category of bereavement risk (level 4 or 5). We also found that family caregivers of patients experienced many different pressures, such as facing the unknown; their own work; and insufficient financial, practical, or physical resources. These issues are associated with various mental problems. Additionally, the level of bereavement risk was significantly correlated with K6 scores (ρ = 0.30, p = 0.032), and the TRS score (ρ = –0.44, p = 0.001). These correlations confirmed previous findings and that the BRAT-J can be an efficient screening tool for the bereavement risk of family caregivers of patients with cancer. Significance of results It appears that the BRAT-J is useful in predicting the likelihood of difficulties or complications in bereavement for family caregivers and could help to provide support with these issues when needed.

Access source material through DOI

Challenges, personal growth and social support among family caregivers of terminally ill cancer patients in Southern China

The purpose of this study was to obtain a deeper understanding of the experiences of family caregivers of terminally ill cancer patients in Shenzhen, Southern China. This study sought to describe how being the main caregiver influences family caregivers’ daily lives. This article reports on the findings from individual interviews with 20 family caregivers of terminally ill cancer patients. The interview transcripts were analyzed using qualitative thematic analysis, which revealed that caring for a cancer patient over the course of his or her illness significantly affected many aspects of family caregivers’ lives. Three major themes were identified in their experiences: (1) challenges, (2) personal growth, and (3) social support. In exploring these themes, this article offers insights into family caregivers’ experiences in Southern China, particularly among family members of terminally ill cancer patients and presents implications for future professional practice, especially oncology social work. 

Access source material through DOI

Exploring caregivers' perspectives on improving care for older people at the end of life in Thailand

Background: Older people in Thailand receive general medical and social care at the end of life, and many rarely access palliative services. In light of this, improving the quality of care for the ageing population relies on addressing the needs of family caregivers, who provide the majority of care in a home setting. Understanding caregivers' perspectives when caring for a friend or relative will help to improve the quality of care that they provide. Aim: To explore caregivers' perspectives on improving care for older people in Thailand in the palliative stage. Methods: A qualitative study using in-depth interviews and observation of 10 older people in the palliative stage and their caregivers was undertaken. Data were analysed using content analysis. Findings: Data analysis revealed three themes: caregivers cared to repay the older person's previous kindness, caregivers cared and changed their caregiving behaviour to minimise the older person's perception of being abandoned or being a burden, and to follow Thai ancestral traditions, so that the older person could die peacefully. Conclusion: This study provides specific instructions for those who provide care for older Thai people in the palliative stage. Finding ways to address caregivers' perspectives on improving care quality could enhance the experience of care recipients.

Access source material through DOI

Psychosocial Issues and Bereavement

Patients with serious illness and their family caregivers face numerous ongoing psychological and social concerns and stressors throughout the disease trajectory. Common challenges relate to the need to manage the disease by making complex and often difficult medical decisions. In addition, the presence of psychological and psychiatric distress, including depression and anxiety, may significantly add to the overall symptom burden for the patient and family caregivers. These challenges negatively impact mood, cognitive function, interpersonal relationships, and medical decision making. If not recognized and adequately addressed, they can seriously undermine coping and resilience, eroding psychological well-being and quality of life. 

Access source material through DOI

Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland

Background: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland. Methods: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public. Results: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content. Conclusions: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative. 

Access source material through DOI

Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis

Background: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. Aim: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. Design: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625). Data sources: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers’ leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool. Results: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector. Conclusion: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative care.

Access source material through DOI

Perceptions of a Home Hospice Crisis: An Exploratory Study of Family Caregivers

Background: Crises that occur in home hospice care affect family caregivers' satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes. Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers. Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined. Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization. Measurements: Participants were asked to identify any crisis - defined as a time of intense distress due to a physical, psychological, and/or spiritual cause - they or the patient experienced, while receiving home hospice care. Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis. Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.

Access source material through DOI

The Experiences of Family Caregivers at the End of Life: Suffering, Compassion Satisfaction and Support of Health Care Professionals: Experiences of Caregivers at the End of Life

A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver's suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.

Access source material through DOI

Rise Above: Experiences of Spirituality Among Family Caregivers Caring for Their Dying Family Member in a Hospice Setting in Pakistan

Family caregivers experience multiple transitions, resolutions, loss, and grief where their search for meaning becomes evident. Spirituality is an important dimension of palliative care, yet little attention has been given to this important aspect of spirituality especially among the family caregivers in a hospice setting. The study aimed to bring the hidden voices of family caregivers, their own spiritual experiences caring for their dying patients in a hospice setting, to guide and direct the care practices of health care professionals. An interpretive descriptive approach guided the study using a purposive sample of 18 family caregivers from a hospice in Karachi, Pakistan. Major themes were family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God's kindness and grace. Spirituality enabled family caregivers to uncover meaningful engagement and provided strength and peace while serving a dying family member in challenging caregiving situations such as adversity and limited resources. They highly valued the love, respect, and honor of the family; showed compassion; believed in God's blessings; and experienced spiritual growth and self-transcendence. Spirituality was found to be a major resource of coping among family caregivers. Health care professionals need to integrate spirituality while developing family-centered interventions in hospice care.

Access source material through DOI

Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement. 

Access source material through DOI

Opting Out of a Time-of-Death Visit: Insights From Home Hospice Family Members

Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family's experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver's previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines. 

Access source material through DOI

A Formative Evaluation of Patient and Family Caregiver Perspectives on Early Palliative Care in Chronic Obstructive Pulmonary Disease across Disease Severity

Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages. Results: Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD. Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.

Access source material through DOI

Making her end of life her own: Further reflections on supporting a loved one with motor neurone disease

Background: People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as 'devastating' for the person and their family. Aim: This study aimed to explore the meaning of supporting a loved one with MND to die. Methods: This study uses reflection and autobiographical story to connect with broader cultural, political and social meaning and understandings of dying. Findings: Four themes were identified relating to the end-of-life trajectory of MND. Loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying-facing it alone). Conclusion: Dying with MND is a complex phenomenon. When a person can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs the support from those acting as power of attorney to make their end of life their own, and they themselves need support to find meaning in their suffering. This autoethnographic reflection provides vicarious experiences for nurses and other healthcare professionals working with people with MND and similar conditions.

Access source material through DOI

Adapting the Resilience Framework for Family Caregivers of Hospice Patients With Dementia

Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data. Identified challenges included difficulties in communication, providing care and decision-making, lack of knowledge, emotional challenges, concern about care facility selection, death with dignity, and lack of public awareness. Resilience resources for caregiving challenges were identified at the individual, community, and societal levels. Anticipated benefits of using these resources included the ability to provide better care and have a better quality of life for both patients and caregivers. The findings of this study can guide the design and implementation of supportive interventions designed for family caregivers of hospice patients with dementia to bolster available resilience resources. 

Access source material through DOI

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

Context: The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. Objectives: The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. Methods: This is a systematic review of reviews. Results: We identified 55 literature reviews published between 2007 and 2018. ACP discussions were facilitated by a diverse range of formats and tools, all of which were acceptable to patients and carers. Patients and carers preferred health professionals to initiate discussions, with the relationships they had with the professionals being particularly important. There were mixed feelings about the best timing, with many people preferring to defer discussions until they perceived them to be clinically relevant. ACP was felt to bring benefits including a greater sense of peace and less worry, but it could also be disruptive and distressing. Patients and carers perceived many benefits from ACP discussions, but these may differ from the dominant narratives about ACP in health policy and may move away from the narratives of RCTs and standardization in research and practice. Conclusion: Researchers and clinicians may need to adjust their approaches as current practices are not aligned enough with patients' and carers' preferences. Future research may need to test implementation strategies of ACP interventions to elucidate how benefits from standardization and flexibility might both be realized. 

Access source material through DOI

Costs of Family Caregiving in Palliative Care (COFAC) questionnaire: development and piloting of a new survey tool

BACKGROUND: Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire. METHODS: Development and piloting of the COFAC questionnaire involved 2 phases: (1) questionnaire development based on published evidence and cognitive interviews with service users; and (2) validity testing involving expert review and piloting with bereaved caregivers. RESULTS: Questionnaire content was generated from previously published research and related to work-related costs, carer time costs and out-of-pocket expenses. 2 group cognitive interviews with 15 service users refined content of the draft questionnaire. Face validity was established through expert review with 9 academics and clinicians. Piloting with 8 bereaved caregivers established acceptability and feasibility of administration. CONCLUSIONS: The COFAC tool has been shown to be valid, acceptable to bereaved caregivers and feasible to administer. The COFAC questionnaire is recommended for economic research in palliative care which seeks to capture data from a broad societal perspective which includes family caregiver costs. 

Access source material through DOI

What Does Death Preparedness Mean for Family Caregivers of Persons With Dementia?

Purpose: The purpose of this study was to clarify the concept of death preparedness for family caregivers in dementia. Conceptualization was required to support the assessment, promotion, and operationalization (ie, measurement) of death preparedness through palliative care interventions such as advance care planning. Methods: Rodgers evolutionary method of concept analysis was selected to guide this study because of the dynamic nature of death preparedness influenced by context, setting, and time. A comprehensive literature search was conducted. Authors performed constant comparative analysis to identify and interpret surrogate/related concepts, attributes, antecedents, and consequences of death preparedness. Results: Most importantly attributes included (1) knowing and recognizing the symptoms of decline in dementia and what dying looks like; (2) understanding emotions and grief responses; (3) accessing and appraising supports needed to manage and care for dying; (4) organizing affairs and completing tasks in advance; (5) accepting that losses are inevitable and imminent; (6) reflecting on caregiving and finding meaning, “a silver-lining”; and (7) closing, reconciling, and renewing relationship bonds and completing the family member’s life. Discussion: This study contributed a full definition of death preparedness in dementia. Findings aligned with/expanded upon Hebert et al Theoretical Framework of Preparedness for End-of-Life. The use of problem- and emotion-based coping strategies by caregivers with support from health-care providers to promote feelings of death preparedness (including self-efficacy and control) and minimize uncertainty was the implication of this study. Development of a holistic preparedness instrument is underway. 

Access source material through DOI

Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: Three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: A research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: An outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: Interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia. 

Access source material through DOI

Knowledge Gaps About End-of-Life Decision Making Among Mexican American Older Adults and Their Family Caregivers: An Integrative Review

Introduction: Mexican Americans (MAs) are the largest, fastest growing Latino subgroup in the United States, yet their use of hospice is limited. To better understand this disparity, the authors conducted an integrative review focused on MA caregiving families’ end-of-life (EOL) care decisions. Method: In this literature review, the authors content analyzed results and discussions of 22 research studies focused on EOL decisions, which sampled MA adults at least 50 years old and/or families. The authors used Whittemore and Knafl’s integrative review process, employing constructs from the Ethno-Cultural Gerontological Nursing Model. Results: Topics included attitudes toward hospice, life-sustaining treatment, advance care planning, EOL decision making, perceptions of a good death, and life-limiting illnesses. EOL research for MA caregiving families is meager, largely atheoretical, and rarely validated by subsequent studies. Discussion: Nursing research is needed to extend theory and policy in order to skillfully match EOL care with MA caregiving families’ needs.

Access source material through DOI

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. Design: Qualitative evidence synthesis using an integrative review approach and thematic analysis. Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

Access source material through DOI

Authenticity, ambivalence and recognition in caring at the end of life and beyond

Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia—one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers’ social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other. 

Access source material through DOI

Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review

Background: Family caregivers are crucial in end-of-life care. However, family caregiving may involve a significant burden with various negative health consequences. Although nurses are in a unique position to support family caregivers at home, little is known about which nursing interventions are effective in this context. Therefore, this study aims to provide insight into nursing interventions currently available to support family caregivers in end-of-life care at home and to describe their effects. Methods: A systematic search was conducted in Embase, Medline Ovid, Web of Science, Cochrane Central, CINAHL and Google Scholar. This review included quantitative studies published from January 2003 until December 2018 reporting on nursing interventions to support adult family caregivers in end-of-life care at home. Data were extracted on intervention modalities, intervention components, and family caregivers’ outcomes. Methodological quality of the studies was assessed with the Cochrane Risk of Bias Tool. Results: Out of 1531 titles, nine publications were included that reported on eight studies/eight interventions. Of the eight studies, three were randomised controlled trials, one a pilot randomised trial, one a non-randomised trial, and three were single-group prospective studies. Four intervention components were identified: psychoeducation, needs assessment, practical support with caregiving, and peer support. Psychoeducation was the most commonly occurring component. Nursing interventions had a positive effect on the preparedness, competence, rewards, and burden of family caregivers. Multicomponent interventions were the most effective with, potentially, the components ‘needs assessment’ and ‘psychoeducation’ being the most effective. Conclusions: Although only eight studies are available on nursing interventions to support family caregivers in end-of-life care at home, they show that interventions can have a positive effect on family caregivers’ outcomes. Multicomponent interventions proved to be the most successful, implying that nurses should combine different components when supporting family caregivers. 

Access source material through DOI

Availability of informal caregivers for palliative care patients with cancer: Is there a difference between higher- and lower-income settings

Objective: Family caregivers are the default caring personnel for terminal cancer patients. The characteristics, demographics, distribution, psychological burden, and socioeconomic standards differ between high- and low-income countries. We aimed to assess those factors and their direct reflection on both the patient and the caregiver. Patients and Methods: This is a comparative cross-sectional study for terminal cancer patients in the palliative care unit between the United Kingdom (UK) as a high-income community and Egypt as a low-income community. We assessed the different characteristics, demographics, living place, the degree of relevance, and the availability of caregivers. Results: We have recruited 216 patients from the UK and 117 patients from Egypt. Informal caregivers were available in 74.5% and 92.3% for these patients with a mean age of 71.5 (standard deviation [SD] 16) years and 50.9 (SD 15.18) years, respectively. There has been a statistically significant difference between the two countries' caregivers in being married, family, and living in the same household (P < 0.0001). Conclusion: Low-income countries are more common to have an informal caregiver who is a family member of different degree of relevance. Caregivers in low-income settings tend to be younger, of the female gender, married, and living in the same household than in high-income ones.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Does informal care impact utilisation of home-based formal care services among end-of-life patients? A decade of evidence from Ontario, Canada

Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home-based end-of-life care programme in Ontario, Canada from 2005 to 2016, we build a two-part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home-based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home-based end-of-life patients. Decision-makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.

Access source material through DOI

"I Don't Feel Like I Have Any Control of My Life at All . . . Everything Overwhelms Me. Everything": Analyzing Caregiver Uncertainty and Control Through Stance Marking

Informal caregivers immersed in the daily care of loved ones at end-of-life stages face such challenges as medical and household issues, worries, doubts, and uncertainties. Using a macro-mezzo-micro approach to discourse, we analyzed parent study interview data involving 46 caregivers facing end-of-life realities. At the mezzo level, we examined caregivers' expressed perceptions of control. We then more finely analyzed discursive expressions of affective stances pertaining to caregivers' emotions and feelings, and epistemic stances pertaining to their knowledge and belief states. Theories of uncertainty and control inextricably interweave areas of cognition, affect, and behavior regarding how caregivers perceive their realities and how they engage in or disengage from coping mechanisms in the process. The findings in this three-tiered approach make salient specific discursive patterns gleaned from systematic and fastidious attention to caregivers' own ways of using language that methodically afford deeper entry into the emotional, physical, and cognitive challenges in their everyday lived experiences.

Access source material through DOI

"He was no longer listening to me": A qualitative study in six Sub-Saharan African countries exploring next-of-kin perspectives on caring following the death of a relative from AIDS

In the era of widespread antiretroviral therapy, few studies have explored the perspectives of the relatives involved in caring for people living with HIV (PLHIV) during periods of ill-health leading up to their demise. In this analysis, we explore the process of care for PLHIV as their death approached, from their relatives' perspective. We apply Tronto's care ethics framework that distinguishes between care-receiving among PLHIV on the one hand, and caring about, caring for and care-giving by their relatives on the other. We draw on 44 in-depth interviews conducted with caregivers following the death of their relatives, in seven rural settings in Eastern and Southern Africa. Relatives suggested that prior to the onset of poor health, few of the deceased had disclosed their HIV status and fewer still were relying on anyone for help. This lack of disclosure meant that some caregivers spoke of enduring a long period of worry, and feelings of helplessness as they were unable to translate their concern and "caring about" into "caring for". This transition often occurred when the deceased became in need of physical, emotional or financial care. The responsibility was often culturally prescribed, rarely questioned and usually fell to women. The move to "care-giving" was characterised by physical acts of providing care for their relative, which lasted until death. Tronto's conceptualisation of caring relationships highlights how the burden of caring often intensifies as family members' caring evolves from "caring about", to "caring for", and eventually to "giving care" to their relatives. This progression can lead to caregivers experiencing frustration, provoking tensions with their relatives and highlighting the need for interventions to support family members caring for PLHIV. Interventions should also encourage PLHIV to disclose their HIV status and seek early access to HIV care and treatment services. 

Access source material through DOI

Social correlates of mental health in gastrointestinal cancer patients and their family caregivers: Exploring the role of loneliness

Purpose: The present study examined the degree to which loneliness mediated the influence of negative (social constraints) and positive (emotional support) relationship qualities on the global mental health of advanced gastrointestinal (GI) cancer patients and their family caregivers. Methods: Fifty patient-caregiver dyads completed measures assessing social constraints (e.g., avoidance, criticism) from the other dyad members, emotional support from others, loneliness, and global mental health. Structural equation modeling was used to examine individual models, and Actor-Partner Interdependence Mediation Modeling was used to examine dyadic associations. Results: Individual path analyses for patients and caregivers demonstrated that emotional support had a significant indirect effect on mental health through loneliness (Bs = 0.32 and 0.30, respectively), but no associations were found between social constraints and mental health. In dyadic analyses, participants' loneliness and mental health were not significantly related to their partner's emotional support, loneliness, or mental health (Bs = - 0.18 to 0.18). Conclusions: Findings suggest that for advanced GI cancer patients and caregivers, emotional support from others alleviates feelings of loneliness, which may lead to better mental health. However, the benefits of emotional support appear to be primarily intrapersonal rather than interpersonal in nature. Additionally, participants endorsed low levels of social constraints, which might explain their lack of relation to loneliness and mental health. Continued examination of interdependence in social processes between cancer patients and caregivers will inform intervention development. 

Access source material through DOI

The experience of patients and family caregivers during hospital-at-home in France

Background: Public health policies tend to generalize the use of Hospital-At-Home (HAH) to answer the growing will of patients to be treated or to die at home. HAH is a model of care that provides acute-level services in the patient's home with the interventions of variety of health care professionals. Relatives participate also in the interventions by helping for sick patients at home, but we lack data on the care of patients and caregivers in HAH. The aim of this study was to make an inventory of the experiences of patients and family caregivers in HAH. Methods: The research was qualitative using nineteen semi-directed interviews from nine patients and ten caregivers of one care unit of Greater Paris University Hospitals' HAH, and the grounded theory was used to analyze the transcripts. Caregivers were also asked, after the interview, to fill in the Zarit Burden Inventory. Results: HAH remained mostly unknown for patients and caregivers before the admission proposition and the outlook of being admitted in HAH was perceived as positive, for both of them. Caregivers had a versatile role throughout HAH, leading to situations of suffering, but also had sources of support. The return home was considered satisfactory by both caregivers and patients, related to the quality of care and increased morale despite HAH's organizational constraints. We noted an impact of HAH on the relationship between the patient and the caregiver(s), but caused by multiple factors: the fact that the care takes places at home, its consequences but also the disease itself. Conclusion: HAH strongly involved the patient's caregiver(s) all along the process. HAH's development necessitates to associate both patients and caregivers and to take into account their needs at every step. This study highlights the need to better assess the ability of the caregiver to cope with his or her relative in HAH with acute and subacute care at home. 

Access source material through DOI

Caregiver-guided pain coping skills training for patients with advanced cancer: Background, design, and challenges for the CaringPals study

Background/Aims: Pain is a major concern of patients with advanced cancer and their caregivers. There is strong evidence that pain coping skills training interventions based on cognitive-behavioral principles can reduce pain severity and pain interference. However, few such interventions have been tested for patients with advanced cancer and their family caregivers. This study aims to test the efficacy of a caregiver-guided pain coping skills training protocol on patient and caregiver outcomes. Methods: A total of 214 patients age ≥18 with Stage III–Stage IV cancer and moderate to severe pain, along with their family caregivers, are being identified and randomized with a 1:1 allocation to the caregiver-guided pain coping skills training intervention or enhanced treatment-as-usual. Dyads in both conditions receive educational resources on pain management, and the caregiver-guided pain coping skills training intervention includes three weekly 60-min sessions conducted with the patient–caregiver dyad via videoconference. Measures of caregiver outcomes (self-efficacy for helping the patient manage pain, caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy for pain management, pain intensity and interference, psychological distress) are collected at baseline and post-intervention. Caregiver outcomes are also collected 3 and 6 months following the patient's death. The study is enrolling patients from four tertiary care academic medical centers and one free-standing hospice and palliative care organization. The primary outcome is caregiver self-efficacy for helping the patient manage pain. Results: This article describes challenges in the design and implementation of the CaringPals trial. Key issues for trial design include the identification and recruitment of patients with advanced cancer and pain, and the follow-up and collection of data from caregivers following the patient's death. Conclusion: The CaringPals trial addresses a gap in research in pain coping skills training interventions by addressing the unique needs of patients with advanced cancer and their caregivers. Findings from this study may lead to advances in the clinical care of patients with advanced cancer and pain, as well as a better understanding of the effects of training family caregivers to help patients cope with pain.

Access source material through DOI

The effectivness of a strengths-oriented therapeutic conversation intervention on perceived support, well-being and burden among family caregivers in palliative home-care

Aims: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.; Background: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.; Design: A pre-experimental design with a one-group pre-test/posttests measurements.; Methods: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.; Results: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).; Conclusion: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.; Impact: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care. 

Access source material through DOI

Competence and Compassion: Key Elements of Professional Care at the End of Life From Caregiver's Perspective

In the act of caring for and helping people in the end-of-life process, the professional who provides care and assistance must know how to maintain a relationship of closeness, empathy, and compassion for the pain and suffering of the person who is going to die. The objective was to understand, elaborate on, and characterize the key elements of end-of-life care of patients from a caregiver's perspective through a qualitative phenomenological multicenter study. Participants were caregivers who had lost a family member at least 2 months but less than 2 years in the past. The techniques used were 5 discussion groups and 41 in-depth interviews, which included a total of 81 participants. To analyze the information, a protocol developed by Giorgi was followed. Two dimensions or units of meaning, with subdimensions, emerged: (1) Technical competence, with the subdimensions "Control of symptoms" and "Continuity of care," and (2) Compassion, with the subdimensions "Effective/affective communication," "Attitudes of kindness and closeness toward the patient and the family," and "Generosity and personalized flexibility of care." Assistance at the end of life requires the proper preparation of professionals who care for these patients, in addition to a compassionate attitude on the part of professionals and the people accompanying the dying person, that fosters a more humanized and dignified treatment in the dying process.

Access source material through DOI

Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers--that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's selfcare or household activities--would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.

Access source material through DOI

Feasibility of e-Pain Reporter: A Digital Pain Management Tool for Informal Caregivers in Home Hospice

Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver's barriers to painmanagement and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-itemCaregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.

Access source material through DOI

End‐of‐life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Background: As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective: This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method: A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results: Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion: Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

Access source material through DOI

Barriers and facilitators to implementing the Carer Support Needs Assessment Tool in a community palliative care setting

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an 'add-on' to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.

Access source material through DOI

Associations between Predeath and Postdeath Grief in Family Caregivers in Palliative Home Care

Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression. Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression. Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III. Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes. Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used. Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief. Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.

Access source material through DOI

Family Caregivers' Satisfaction With Specialized End-of-life Care Provided at Home: Assessment of the Psychometric Characteristics of the Icelandic Version of the Family Assessment of Treatment at the End of Life Questionnaire

Several studies have highlighted the significant role of families in end-of-life care. Carers' well-being may depend on how they experience the care and support provided to their loved ones. This study was conducted to investigate family caregivers' assessment of specialized end-of-life care in a sample of 119 close family members in Iceland. The response rate was 58.8% (n = 70). Furthermore, the aim was to assess the psychometric characteristics of the Icelandic version of Family Assessment of Treatment at the End of Life (FATE). Descriptive statistics were used to describe the characteristics of the data. Results indicate that good communication and understanding of all parties concerned are the foundation for family caregivers' satisfaction with end-of-life care. Participants were generally satisfied with the care provided, whereas some important aspects of care were rated as excellent. Evaluation of management of symptoms reported in this study should be given specific attention in future studies considering its unsatisfactory outcomes. Nurses need to be aware of the impact that physical suffering of the patient might have on the family caregivers. The Icelandic version of the Family Assessment of Treatment at the End of Life instrument is a psychometrically sound instrument useful for measuring caregivers' satisfaction with service provided at the end of life, although modifications would improve the instrument for use on this population.

Access source material through DOI

Family Caregiver Perspectives on End-of-Life Dreams and Visions during Bereavement: A Mixed Methods Approach

Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved. Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process. Design: Mixed-methods cross-sectional survey. Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited. Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool. Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making. Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.

Access source material through DOI

Factors Associated with Anxiety and Depression among Family Caregivers of Patients Undergoing Palliative Radiotherapy

Objective: The family caregivers of patients receiving palliative care experience high levels of anxiety and depression. The aim of the present study was to investigate the factors associated with family caregivers' anxiety and depression when caring for patients with advanced cancer in Greece.; Methods: The sample consisted of 100 patients undergoing palliative radiotherapy and their respective caregivers. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the MD Anderson Symptom Inventory. Their respective caregivers completed the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the HADS. Correlational and multiple regression analyses were conducted to identify potential predictors of anxiety and depression.; Results: The majority of patients were male (63.0%), whereas the majority of their caregivers were female (76.0%). The mean ages of patients and caregivers were 63.9 ± 10.8 and 53.3 ± 12.6 years, respectively. Caregiving anxiety and depression were associated with patients' variables, such as gender (P < 0.0005), primary cancer (P = 0.008), and past surgery (P = 0.002), and caregiver's variables, such as gender (P = 0.001), co-residence (P = 0.05), previous care experience (P = 0.04), and means of transport (P = 0.038). In multiple regression analyses, caregiving anxiety and depression were significantly predicted by caregivers' and patients' characteristics, in a model that accounted for 48% of the anxiety variance (P < 0.0005) and 39% of the depression variance (P < 0.0005).; Conclusion: The caregivers who experienced more anxiety and depression shared the following traits: they were women, cared for men with lung cancer, cared for patients not undergoing surgery, lived together, were younger, went to the hospital by private means of transport, had previous care experience, and perceived an increased degree of general burden. Further investigation of the factors that may affect caregivers' psychological state is required to better identify parameters that may predict it.

Access source material through DOI

Qualitative study of bereaved carers' experiences in advanced melanoma

Melanoma is the deadliest form of skin cancer. In Australia, where this study was conducted, there were 1,281 deaths from melanoma in 2016. Treatments for melanoma have changed rapidly in recent years with the introduction of immune and targeted therapies. These have resulted in longer term survival for some, but it is not clear which patients these treatments will work for, and for how long. This study aimed to understand the impact of melanoma treatments, as they relate to diagnosis and prognosis, on the experiences of family carers. Interviews were conducted with twenty carers of patients who were treated at three melanoma centres in Australia and who subsequently died. The study found that diagnosis of advanced melanoma was a time of uncertainty as carers struggled to understand the implications of the diagnosis. Treatment options in the form of relatively new immune and targeted therapies added to uncertainty around prognosis (i.e. the likely outcome, such as chance of survival). Carers reported unclear communication of prognosis by medical specialists. Some carers reported that medical specialists did not want or were not able to give a prognosis. Many carers expected that treatments would have positive outcomes. The study findings indicate that medical specialists should recognise and address carer understanding of and need for information about prognosis as early as possible following diagnosis. Communication of the uncertain benefit of these new therapies can help patients and carers make decisions about treatment preference and care planning

Access source material through DOI

End-of-Life Preparations Among LGBT Older Canadian Adults: The Missing Conversations

LGBT (lesbian, gay, bisexual, and transgender) older adults are more likely than their heterosexual peers to age with limited support in stigmatizing environments often poorly served by traditional social services challenging their preparedness for end of life. Fourteen focus groups and three individual interviews were conducted in five Canadian cities with gay/bisexual men (5 groups 40 participants), lesbian/bisexual women (5 groups 29 participants), and transgender persons (3 interviews, 4 groups 24 participants). Four superordinate themes were identified: (a) motivators and obstacles, (b) relationship concerns, (c) dynamics of LGBT culture and lives, and (d) institutional concerns. Several pressing issues emerged including depression and isolation (more common among gay and bisexual men), financial/class issues (lesbian and bisexual women), and uncomfortable interactions with health-care providers (transgender participants). These findings highlight the challenges and complexities in end-of-life preparation within LGBT communities.

Access source material through DOI

Addressing personal barriers to advance care planning: Qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers

Objective: Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients' and families' emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement. Method: The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.Result Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease. Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

Access source material through DOI

Who provides care in the last year of life? A description of care networks of community-dwelling older adults in the Netherlands

Background: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. Methods/design: We used data from participants of the Longitudinal Aging Study Amsterdam (2001–2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees. Results: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care. Conclusion: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.

Access source material through DOI

Psychological morbidity in family caregivers of people living with terminal cancer: Prevalence and predictors

Objective: The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. Method: One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods.  Result Regarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity. Significance of results This study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach to reduce the risk of family maladjustment when facing the imminent death of a family member and to prevent postdeath unadjusted responses.

Access source material through DOI

Family Caregivers' Subjective Caregiving Burden, Quality of Life, and Depressive Symptoms Are Associated With Terminally Ill Cancer Patients' Distinct Patterns of Conjoint Symptom Distress and Functional Impairment in Their Last Six Months of Life

Context: Family caregivers constitute a critical component of the end-of-life care system with considerable cost to themselves. However, the joint association of terminally ill cancer patients' symptom distress and functional impairment with caregivers' subjective caregiving burden, quality of life (QOL), and depressive symptoms remains unknown. Objectives/methods: We used multivariate hierarchical linear modeling to simultaneously evaluate associations between five distinct patterns of conjoint symptom distress and functional impairment (symptom-functional states) and subjective caregiving burden, QOL, and depressive symptoms in a convenience sample of 215 family caregiver-patient dyads. Data were collected every 2 to 4 weeks over patients' last 6 months. Results: Caregivers of patients in the worst symptom-functional states (States 3-5) reported worse subjective caregiving burden and depressive symptoms than those in the best two states, but the three outcomes did not differ between caregivers of patients in State 3 and States 4-5. Caregivers of patients in State 5 endured worse subjective caregiving burden and QOL than those in State 4. Caregivers of patients in State 4 suffered worse subjective caregiving burden and depressive symptoms but comparable QOL to those in State 2. Conclusion: Patients' five distinct, conjoint symptom-functional states were significantly and differentially associated with their caregivers' worse subjective caregiving burden, QOL, and depressive symptoms while caring for patients over their last 6 months.

Access source material through DOI

Caregiver burden and bereavement among family caregivers who lost terminally ill cancer patients

Objective: Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.; Method: Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.Result A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the "color" of death, social and professional support, the moment of death, and grief and loss. Significance of results The analysis showed that caregiving may positively or negatively influence the bereavement process.

Access source material through DOI

Home Hospice Caregivers' Perceived Information Needs

Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice.; Objectives: To identify the information needs of informal home hospice caregivers.; Design: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis).; Participants: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization.; Measured: Participants' information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition.; Results: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides.; Conclusion: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.

Access source material through DOI

When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer

Objective: To explore family caregivers' emotional experiences while caring for patients with advanced cancer and navigating distressing information, awareness of dying, and difficult decisions. Methods: Qualitative descriptive study of semi-structured interviews with 92 bereaved caregivers of patients with advanced cancer. Interviews explored caregivers' experiences as patients transitioned out of active cancer treatment and neared the end of life. Results:  Included in caregivers' characterization of this transition time were three particularly emotionally charged experiences. The first occurred when caregivers felt jolted into awareness that patients were dying.They were startled to realize that patients would die sooner than expected; some expressed frustration that they had not been adequately warned. In the second, caregivers felt conflicted when involved in decisions that pitted patients' preferences against what caregivers felt patients needed, resulting in ambivalence, guilt, and grief. Thirdly, caregivers who felt they did their best for patients expressed fulfillment and gratitude. Conclusion: Caregivers of patients with advanced cancer face unique, emotionally charged experiences that can lead to distress and affect care at the end of life. Practice Implications: Awareness of these situations may help oncology teams to provide sufficient guidance and support, partner with caregivers to clarify patients' needs, and deliver higher quality care. 

Access source material through DOI

A randomised phase II trial to examine feasibility of standardised, early palliative (STEP) care for patients with advanced cancer and their families [ACTRN12617000534381]: a research protocol

Background: Current international consensus is that 'early' referral to palliative care services improves cancer patient and family carer outcomes; however, in practice, these referrals are not routine. Uncertainty about the 'best time' to refer has been highlighted as contributing to care variation. Previous work has identified clear disease-specific transition points in the cancer illness which heralded subsequent poor prognosis (less than 6 months) and which, we contest, represent times when palliative care should be routinely introduced as a standardised approach, if not already in place, to maximise patient and carer benefit. This protocol details a trial that will test the feasibility of a novel standardised outpatient model of early palliative care [Standardised Early Palliative Care (STEP Care)] for advanced cancer patients and their family carers, with referrals occurring at the defined disease-specific evidence-based transition points.The aims of this study are to (1) determine the feasibility of conducting a definitive phase 3 randomised trial, which evaluates effectiveness of STEP Care (compared to usual best practice cancer care) for patients with advanced breast or prostate cancer or high grade glioma; (2) examine preliminary efficacy of STEP Care on patient/family caregiver outcomes, including quality of life, mood, symptoms, illness understanding and overall survival; (3) document the impact of STEP Care on quality of end-of-life care; and (4) evaluate the timing of palliative care introduction according to patients, families and health care professionals.; Methods: Phase 2, multicenter, open-label, parallel-arm, randomised controlled trial (RCT) of STEP Care plus standard best practice cancer care versus standard best practice cancer care alone.; Discussion: The research will test the feasibility of standardised palliative care introduction based on illness transitions and provide guidance on subsequent development of phase 3 studies of integration. This will directly address the current uncertainty about palliative care timing.; Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12617000534381.

Access source material through DOI

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care-An Overview of Current Literature

Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.

Access source material through DOI

Family caregiver descriptions of stopping chemotherapy and end-of-life transitions

Purpose: The purpose of this study was to describe family caregivers' perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers' perceptions of the patient's experience of care at the end of life (EOL). Methods: Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end-stage cancer enrolled in a randomized clinical trial. We used a phased approach to data analysis including open coding, focused coding, and within and across analyses. Results: We identified three patterns of transitions characterizing the shift away from active cancer treatment: (1) "We Pretty Much Knew," characterized by explicit discussions about EOL care, seemingly shared understanding about prognosis and seamless transitions from disease-oriented treatment to comfort-oriented care, (2) "Beating the Odds," characterized by explicit discussions about disease-directed treatment and EOL care options, but no shared understanding about prognosis and often chaotic transitions to EOL care, and (3) "Left to Die," characterized by no recall of EOL discussions with transitions to EOL occurring in crisis. Conclusions: As communication and palliative care interventions continue to develop to improve care for patients with advanced cancer, it is imperative that we take into account the different patterns of transition and their unique patient and caregiver needs near the end of life. Our findings reveal considerable, and potentially unwarranted, variation in transitions from active treatment to death.

Access source material through DOI

Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review

Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden.; Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.; Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.; Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.

Access source material through DOI

Acceptance and treatment effects of an internet‐delivered cognitive‐behavioral intervention for family caregivers of people with dementia: A randomized‐controlled trial

Objectives: The study evaluated the efficacy of an internet‐delivered cognitive‐behavioral intervention for caregivers of people with dementia and examined acceptance of program characteristics. Method: Thirty‐nine caregivers (Mage = 62.11 ± 9.67, 78.4% female) were enrolled in a 2 × 3 randomized‐controlled trial (RCT) that compared an intervention and wait‐list control group. A cognitive‐behavioral intervention program was adapted for delivery via an internet platform. Participants exchanged eight weekly messages with a therapist. Results: Treatment satisfaction and acceptance of the program were high. Well‐being increased over the intervention duration and intervention group participants were better able to cope with the anticipated death of the care recipient and utilized more psychosocial resources after the intervention ended. Effects were not maintained until follow‐up and there were no treatment effects for depression and burden of care. Conclusions: Internet‐delivered cognitive‐behavioral interventions are suitable for caregivers. A larger RCT needs to investigate possible combinations of classic and internet‐delivered programs and confirm efficacy.

Access source material through DOI

Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature

Background: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. Aims: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers. Findings: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support. Conclusion: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings. 

Access source material through DOI

Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study

Background: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. Methods: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3–24 months previously with a diagnosis of MND. Data were analysed using thematic analysis. Results: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient. Conclusions: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.

Access source material through DOI

Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.

Access source material through DOI

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it.; Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.; Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.; Setting/participants:: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.; Results: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.; Conclusion: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

Access source material through DOI

Quality of Life of Family Caregivers of Patients With Cancer in Korçe, Albania

Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups.; Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being.; Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains ("Rate your overall physical/psychological/social/spiritual well-being"). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL.; Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.

Access source material through DOI

Barriers and Facilitators to Preparedness for Death: Experiences of Family Caregivers of Elders with Dementia

Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.

Access source material through DOI

Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care

This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient's death. In total, 117 family caregivers completed all questionnaires. The participants' grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.

Access source material through DOI

Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care

Introduction: In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.; Aim: The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.; Methods: The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.; Results: The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.; Conclusions: This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.

Access source material through DOI

Self-Care System for Family Caregivers of Cancer Patients Using Resonant Breathing with a Portable Home Device: A Randomized Open-Label Study

Background: Self-care systems for early-stage specialist palliative care for cancer patients and their family caregivers have received much attention recently. Resonant breathing is an established method for maximizing heart rate variability (HRV), but it has not been implemented for home self-care. Objective: We aimed to examine the usefulness and ease of implementation for family caregivers to administer resonant breathing using a portable device at home. Design: We divided caregivers into two groups—a home self-care group and a control group—and we conducted a randomized open-label study, with rate of change in HRV being the primary outcome. Setting/Subjects: We administered HRV biofeedback (HRV-BF) using resonant breathing to 54 family caregivers who felt burdened by their nursing care responsibilities. Results: Among the self-care group, 92.6% of participants completed the study in their homes; 28 days after intervention initiation, the resonant breathing implementation rate at home was 86.1%. There was an interaction between time course and grouping in our HRV comparisons: the change rate in the home self-care group was higher during HRV-BF than before HRV-BF. Conclusions: Because family caregivers in our study learned to quickly administer resonant breathing using a portable device at home, resonant breathing improved rapidly, along with autonomic nerve function and quality of life.

Access source material through DOI

"Death Lay Here on the Sofa": Reflections of Young Adults on Their Experience as Caregivers of Parents Who Died of Cancer at Home

The prevalence of terminally ill patients, who die at home, is increasing. The aim of this study was to address the meaning of being young adults, who were the caregivers of their dying parents. In-depth, semistructured interviews were conducted with 14 Israeli Jewish young adults, who had been the primary caregivers for parents who had cancer and eventually died at home. Three themes emerged: (a) "I was Chosen and was led into that situation": modes of taking on and performing the role of a caregiver, (b) "My life was on hold": the experience of performing the caregiving role, and (c) "I underwent . . . the real school of life": caring for the dying parent as an imprint on self-development. Participants integrated compassionate caring into their identity, reflecting an empowering encounter of young carers with their dying parents as a process of growth in the face of harsh, stressful experiences. 

Access source material through DOI

Impact of medical assistance in dying (MAiD) on family caregivers

Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.

Access source material through DOI

Hospice Bereavement Service Delivery to Family Members and Friends With Bereavement-Related Mental Health Symptoms

Objectives: A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG).; Methods: De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed.; Results: Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral.; Discussion: The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

Access source material through DOI

'It all depends!': A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers

Background: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life.; Aim: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.; Design: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description.; Setting/participants: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia.; Results: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences.; Conclusions: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

Access source material through DOI

Informal Caregivers' Perceptions of Needs From Hospice Providers: An Integrative Review

Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.; Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.; Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.; Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.

Access source material through DOI

What do family caregivers know about palliative care? Results from a national survey

Objective: Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.; Method: Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term "palliative care" and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., "Palliative care is the same as hospice"). Result More than one-half of caregivers (55%) had "never heard" of palliative care; 19.2% knew what palliative care was and "could explain it to someone else." In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% "strongly" or "somewhat" agreed that "Palliative care is the same as hospice"; another 10.5% "didn't know." Similarly, 40% reported that "When I think of palliative care, I automatically think of death." Significance of results One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

Access source material through DOI

How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

Aims Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. Methods Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. Findings Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. Conclusions These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

Access source material through DOI

A Problem-Solving Intervention for Hospice Family Caregivers: A Randomized Clinical Trial

Objectives: Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing.; Design: In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC).; Setting: Home hospice.; Participants: A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years.; Intervention: PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions.; Measurements: Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview.; Results: Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition.; Conclusion: The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.

Access source material through DOI

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.; Objectives: To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.; Process Of Development: Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers.; Final Training Programme: The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator's notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.; Conclusion: The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

Access source material through DOI

How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers' Outcomes?

Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.; Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.; Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses.; Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care.; Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model.; Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.

Access source material through DOI

A translational approach to design effective intervention tools for informal caregivers of dependent cancer patients

Objectives Caregivers of terminal patients often report a higher prevalence of unmet needs than cancer survivors. However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated. The ultimate aim of this research was to obtain specific information about the sociodemographic characteristics, the different types of care provided, the symptoms due to burdens, the impact of caring on the quality of life, and the unmet needs of informal caregivers of dependent patients with cancer. This is to design effective intervention programs that can be implemented from the hospital setting itself and therefore, to improve their quality of life and prevent the deterioration of their health. Study design A cross-sectional design and survey methodology were used for descriptive purposes. Methods The sample was composed of 132 informal caregivers of dependent patients with cancer, from a public hospital in Valencia, Spain, who were identified through the patient database of the oncology service, over the 4-month data collection period. Self-administered questionnaires were combined with personal interviews: Interview Protocol for the main caregiver, Questionnaire ICUB97, and survey of hospital quality. Results The most frequently provided types of care included the following: keeping the patient company, acting as an intermediary between them and healthcare workers, and helping them to do basic daily life activities. The main negative consequences caregivers reported were the following: feeling more tired, having less free time, changing their daily routines, and having fewer social relationships/interactions and various emotional and physical symptoms. Many of the needs of informal caregivers were not being met: resolution of doubts about illness, training in the care they should provide to the patient, and psychological help. Conclusions Recommendations for the development of effective intervention programs are offered: increasing the psychological services provided in oncology units, training medical staff in communication skills, facilitating access to information about the disease through different means, training for informal caregivers in care techniques, coping and communication skills, self-care, and organization of time. On the one hand, implementing effective intervention programs for informal caregivers will reduce the amount withdrawing from their care duties and on the other hand, the proliferation of what are known as secondary patients. Highlights • Caregiving women were more prevalent than men, with an average age of 45 years, and a medium socioeconomic status. • The most frequently provided cares were helping patients in basic activities and mediating between them and medical staff. • The main negative consequences for caregivers were changing daily routines and various emotional and physical symptoms. • The main unmet need of caregivers was specific information and training about the care they should provide to the patient.

Access source material through DOI

Accounts of Family Conflict in Home Hospice Care: The Central Role of Autonomy for Informal Caregiver Resilience

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.

Access source material through DOI

Preferred Place of Death for Patients With Incurable Cancer and Their Family Caregivers in Egypt

Background: Little is known about the place of death of patients with cancer in Eastern Mediterranean countries including Egypt, where palliative care is underdeveloped. Identifying the preferred place of death (PPoD) is important for the development of appropriate palliative care models in these countries. Objectives: To know the PPoD of Egyptian patients with incurable cancer and their family caregivers (FCGs) and to determine the factors that may impact their preferences. Methods: An observational cross-sectional study that included 301 dyads of patients with incurable cancer and one of their FCGs. A questionnaire was designed to collect data about the characteristics of patients and FCGs as well as their preferences. Results: The majority of dyads (272/301, 90.4%) answered the PPoD question. Home was the PPoD in 93% of patients and 90.1% of FCGs (P = .218). The congruence between patients' and FCGs' PPoD was 92.7% (κ = 0.526). In multivariate analysis, poorer performance status (Eastern Cooperative Oncology Group 3 or 4) and full employment of FCGs associated significantly with patients' preference to die in hospital (odds ratio [OR] = 3.015 [95% confidence interval [CI]: 1.004-9.054], P = .049 and OR = 4.402 [95% CI: 1.561-12.417], P = .005, respectively), while poorer performance status and nonreferral to the palliative medicine unit were associated with FCGs' preference of hospital death (OR = 2.705 [95% CI: 1.105-6.626], P = .029 and OR = 2.537 [95% CI: 1.082-5.948], P = .032, respectively). Conclusions: The results of the current study suggest that home is the PPoD for the vast majority of Egyptian patients with incurable cancer and their FCGs. Palliative care interventions that promote home death of patients with incurable cancer are needed in Egypt.

Access source material through DOI

Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model

Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.; Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.; Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.; Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.; Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.

Access source material through DOI

Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

Context. Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. Objectives. The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers. Methods. Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0–9, using a cut point of 5 to define “high” strain) after comprehensively adjusting for other older adult and caregiver factors. Results. The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non–end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10–3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain. Conclusion. Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.

Access source material through DOI

Improving patient safety by easing caregiver burden

The physical and emotional toll of caring for someone who requires assistance moving, bathing, eating, grooming, and using the restroom increases if he or she is exhibiting signs of confusion or aggression. The literature is abundant with evidence that family caregivers are prone to anxiety and depression related to their duties. Additionally, burdened caregivers can put their patients at risk, as anxiety and depression can impact judgment. Caught in temporary situations that can seem endless, many caregivers experience mental health issues related to social isolation, financial concerns, and physical exhaustion. Here, Mathias explores the psychological impact of providing end-of-life care for a loved one and offers tools to assess and alleviate caregiver burden.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

What do patients and family-caregivers value from hospice care? A systematic mixed studies review

Background: It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK. Methods: ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis. Results: Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided. Conclusion: Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research. 

Access source material through DOI

Advance care plans in dementia: User-centred design

Objectives: Historically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life. ACP has been defined as a process of discussing and recording of wishes, values and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. The objective of this project was to involve people with dementia and their family carers in co-design of ACP guide and template to prepare for further study related to communication processes in ACP. Methods: A user-centred design process cycle of development and review was undertaken by Dementia UK which involved people with dementia, family carers, Admiral Nurses and other key stakeholders in developing an ACP guide and template. Results: Nine cyclical stages were undertaken to achieve the outcome of an ACP guide and template. Conclusion: Co-production using a user-centred design approach offers a structured and inclusive approach to developing ACP materials.

Access source material through DOI

Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review

Background: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported. Aim: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature. Design: An integrative study design was undertaken using systematic methods. Data sources: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms. Results: Two quantitative, two qualitative and two mixed method studies were identified (n = 6). All community initiatives identified were professionally led, although three had consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial. Conclusions: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.

Access source material through DOI

Delivering problem‐solving therapy to family caregivers of people with cancer: A feasibility study in outpatient palliative care

Objective In response to the well‐documented need for evidence‐based cancer caregiver support, we examined the feasibility of problem‐solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem‐solving therapy on family caregivers' anxiety, depression, and quality of life. Methods We conducted a feasibility study of a structured problem‐solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem‐solving therapy intervention, which was delivered over three sessions via web‐based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. Results Problem‐solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem‐solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). Conclusions Problem‐solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.

Access source material through DOI

Collaborative story production with bereaved family carers of people who died in advanced age

Purpose Is collaborative story production (CSP) a useful method to collaborate with bereaved families to record their reflections on the end of life circumstances and care of people of advanced age? The paper aims to discuss this issue. Design/methodology/approach Drawing from Te Pākeketanga, a bicultural study involving 58 bereaved Māori and non-Māori families on behalf of 52 older relatives, the authors describe the CSP method. Researchers and participants co-created personalised written stories about the older person and their end of life experiences, supported with photographs of family, friends and memorabilia. The authors aimed to uplift the status of the older person and their family by tangibly reflecting the significance and magnitude of what had been shared and to strengthen the research analysis.Findings CSP supported member checking, promoted a robust understanding of participants’ narratives and increased the trustworthiness of data and strengthened the Kaupapa Māori and social constructivist analysis. However, some participants experienced difficulty revisiting painful memories when reading their story. CSP took longer than anticipated, was labour intensive and required a highly skilled and resourced team to ensure participants benefitted. Originality/value Using the CSP method with a bicultural cohort of bereaved families who had provided care to someone over the age of 80 was very helpful in assisting the researchers to gather narrative information and present it back to participants in a story format for their comment and feedback. The method contributed a useful way to partner with bereaved family caregivers following the death of an older family member. The authors needed a way to record the participants’ narratives of the older person’s end of life circumstances and end of life care experiences. This was very important, particularly for grieving families and indigenous families who may have felt vulnerable engaging with research, and with the research processes. The approach provided a helpful and non-intrusive member-checking process. The unique bicultural study approach deliberately utilised the CSP method to assist the researchers to work safely with bereaved families as the participants reflected upon and explored not only the end of life circumstances of the older person, but they also focused on the “death” and their own bereavement experiences. CSP also provided a helpful member-checking method; the authors were working with highly sensitive information and wanted to ensure that the authors as researchers understood and interpreted the families’ narrative data correctly, according to their perspectives.

Access source material through DOI

Changes in and modifiable patient‐ and family caregiver‐related factors associated with cancer patients’ high self‐perceived burden to others at the end of life: A longitudinal study

This prospective, longitudinal study explored changes in and modifiable factors associated with high self‐perceived burden to others (SPB) among a convenience sample of 276 dyads of terminally ill Taiwanese cancer patients and their family caregivers over patients’ last year of life. High SPB was evaluated by scores ≥20 on the Self‐Perceived Burden Scale. Modifiable factors of high SPB included factors related to both patients (i.e., symptom distress, functional dependence and coping capacity) and caregivers (i.e., caregiving burden, depressive symptoms and quality of life [QOL]). Modifiable factors of high SPB were identified by multivariate logistic regression modelling with the generalised estimating equation while controlling for demographic factors. We found that patients tended to experience high SPB if they had more symptom distress. In contrast, the likelihood of high SPB was significantly lower if patients had greater coping capacity and their caregivers reported better QOL. High SPB was not associated with patients’ functional dependence, caregivers’ caregiving burden and depressive‐symptom level while providing end‐of‐life (EOL) care, and time proximity to death. Healthcare professionals may alleviate terminally ill cancer patients’ high SPB at EOL through palliative care that adequately manages patients’ physical symptom distress, enhances patients’ coping capacity and improves family caregivers’ QOL.

Access source material through DOI

Patient–family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.–Mexico border region

Objective: Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region. Method: This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims. Results: About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication. Significance of Results: EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

Access source material through DOI

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients’ and family caregivers’ experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety‐five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Access source material through DOI

Priorities of a "good death" according to cancer patients, their family caregivers, physicians, and the general population: a nationwide survey

Purpose: Understanding the concept of a "good death" is crucial to end-of-life care, but our current understanding of what constitutes a good death is insufficient. Here, we investigated the components of a good death that are important to the general population, cancer patients, their families, and physicians.; Methods: We conducted a stratified nationwide cross-sectional survey of cancer patients and their families from 12 hospitals, physicians from 12 hospitals and the Korean Medical Association, and the general population, investigating their attitudes toward 10 good-death components.; Findings: Three components-"not be a burden to the family," "presence of family," and "resolve unfinished business"-were considered the most important components by more than 2/3 of each of the three groups, and an additional three components-"freedom from pain," "feel that life was meaningful," and "at peace with God"-were considered important by all but the physicians group. Physicians considered "feel life was meaningful," "presence of family," and "not be a burden to family" as the core components of a good death, with "freedom from pain" as an additional component. "Treatment choices' followed, "finances in order," "mentally aware," and "die at home" were found to be the least important components among all four groups.; Conclusion: While families strongly agreed that "presence of family" and "not be a burden to family" were important to a good death, the importance of other factors differed between the groups. Health care providers should attempt to discern each patient's view of a good death.

Access source material through DOI

The experiences of family caregivers providing palliative cancer care in Thailand

Background: Family caregivers have a significant role in Thai healthcare, taking on responsibilities of health professionals. The purpose of this research was to explore Thai family caregivers' experiences of providing palliative cancer care. Methods: This qualitative study took a phenomenological approach. In-depth interviews were conducted with 14 family caregivers aged 33–72 years in a regional hospital in the north of Thailand. The data was analysed using Colaizzi's phenomenological approach. Rigour was established by following Lincoln and Guba's guidelines for qualitative research. Findings: The experiences of Thai family caregivers providing palliative cancer care could be categorised into four themes: caring as a team; caring as supportive care; taking care to keep patients happy; and caring for the self while looking after a relative. Conclusion: Health professionals can support family caregivers to deliver the best care for cancer patients and to help them decrease their stress. This study discusses ways how this may be done.

Access source material through DOI

Palliative Care — Online Resources for Patients, Families, and Caregivers

The article focuses on preventing or alleviating suffering in patients with serious illness using palliative care program. It mentions about providing effective palliative care treatment for improving quality of life for the patient and to provide support for family and caregivers; and offering hospice care to the patients related to issues such as nutrition and hydration.

Access source material through DOI

Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.; Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.; Participants: 44 bereaved carers, who had been identified by GP as 'main carer' of someone recently deceased (3-12 months), aged between 38 and 87 years old (mean= 67).; Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.; Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.; Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care 'work'. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.

Access source material through DOI

Spiritual needs experienced by the patient's family caregiver under Oncology palliative care

Objective: To understand the spiritual needs of the patients' family caregiver under Oncology palliative care. Method: A descriptive, qualitative study with 20 family caregivers of patients hospitalized in an Oncology palliative unit. The data were collected through a phenomenological interview, and analyzed by the method of Amadeo Giorgi supported in the Merleau-Ponty's Phenomenology of Perception. Results: The categories were unveiled: "Spirituality as a foundation for life"; "Spiritual needs sublimated by the family caregiver"; and "Care expected by the nurse". Conclusion: Family caregivers appropriate spirituality as a coping strategy and meeting the purpose and meaning of the moment experienced. It is profitable for the nurse to contemplate the spiritual needs of the caregiver in order to provide a guided assistance in the humanization of care and comprehensive care. Therefore, there is a need for new studies that address this dimension to the family caregiver in the field of Oncology, since this care is incipient by the nurse.

Access source material through DOI

'It's a traumatic illness, traumatic to witness': a qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T‐cell lymphoma

Background: Cutaneous T‐cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. Objectives: To explore the experiences of bereaved family caregivers of patients with CTCL. Methods: Single, semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement. Results: Fifteen carers of 11 deceased patients participated. Experiences clustered under four themes: (1) complexity of care and medical intervention; (2) caregiver roles in advanced CTCL; (3) person‐centred vs. organization‐centred care in advanced CTCL and (4) knowing and not knowing: reflections on dying, death and bereavement. Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organizational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Sub‐themes within each theme provide more detail about caregiver experiences. Conclusions: Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organizational flexibility and of good communication between healthcare providers in advanced CTCL. 

Access source material through DOI

Experiences of bereaved family caregivers of patients with CTCL

Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it). Relatives of 11 patients with CTCL who had died were interviewed, four months or more after the death. The themes from what they said are described. Family members gave vivid descriptions of how the illness changed the appearance of their relative. They spoke of how difficult it was to look after someone with very damaged skin. They described the many different things they had to do to care for their relative both in hospital and at home. Some patients had frequently been in and out of hospital. Some caregivers expected them to come home each time and so had not felt prepared when their relative died. Several caregivers described how upsetting it was to see how illness affected their relative before they died. The authors say that family caregivers should be seen as part of the care team looking after the patient. They recommend that carers' needs for practical and emotional support and information should be considered during each patient's illness. Support for carers should also be offered following the death of their relative. 

Access source material through DOI

Exploring the quality of the dying and death experience in the Emergency Department: An integrative literature review

Aim The aim of this integrative literature review was to explore the quality of the dying and death experience in the Emergency Department from the perspective of staff and carers. Background Death in the Emergency Department is common. Understanding the quality of the death and dying experience of patients and their family members is crucial to building knowledge and improving care. Design Systematic integrative literature review reported following the PRISMA guidelines. Data sources Pubmed, Cumulative Index to Nursing and Allied Health Literature, Magonline (internurse), and the Cochrane library. Articles used were published in English during 1990- 2017. Review method Appraisal and thematic analysis. Results Sixteen articles are included. Eight themes emerged from the literature: care in the Emergency Department is about living not dying, staff perceive that death is a failure, staff feel underprepared to care for the dying patient and family in this environment, there is limited time for safe standards of care, staff stress and distress, staff use of distancing behaviours, the care of the dying role is devolved from medics to nurses at the end of life, and patients and staff perceive that the Emergency Department is not the preferred place of death Conclusion There are areas of concern about end of life care in the Emergency Department. To improve practice and to ensure that a good death occurs, further research is needed. There is a need to understand more about the experience of caregivers when a relative or friend dies in the Emergency Department.

Access source material through DOI

Self-efficacy and Stress Among Informal Caregivers of Individuals at End of Life

Researchers have established associations between the stressors of providing informal care and caregiver health risks. Despite the negative consequences, researchers have identified the existence of protective factors that have the potential to buffer or prevent stress. The purpose of this study was to determine the relationship between self-efficacy and stress in adult informal caregivers providing end-of-life care. This cross-sectional, associational study analyzed data from questionnaires completed by adult informal caregivers providing end-of-life care for an adult in North Texas. Questionnaires provided measures of self-efficacy, stress, and caregiver perceived health. Findings indicated caregiver self-efficacy globally had a significant correlation with stress, whereas caregivers' confidence in caring for themselves had a significant negative relationship with perceived stress. Specifically, study findings indicate caregivers with greater confidence in managing demands of caregiving have lower levels of stress, and caregivers with greater confidence in caring for themselves, specifically, have lower levels of perceived stress. Study findings highlight the importance of caregivers' self-care needs. Health care practitioners should recognize and intervene to support caregivers' self-care needs in order to prevent additional, needless health problems in this population.

Access source material through DOI

'Being with' or 'doing for'? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Purpose: To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life. Methods: Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching. Results: Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described-'being there' and 'doing for'. 'Being there' encapsulated the importance of companionship and the relational dynamic between volunteer and patient. 'Doing for' described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious. Conclusion: Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact.Trial Registration: ISRCTN12929812.

Access source material through DOI

The consensual universe of family caregivers and their standing in the care services: a social representation study

Objective: The study's aim has been to analyze the relatives' representations of patients under palliative care. Methods: It is a descriptive research with a qualitative approach, which is based on the Serge Moscovici's Social Representation Theory. Results: The research's results showed that death is described as a final physiological stage, in other words, a technically well-ordered process of nature and the only certainty that we have in life. Moreover, death can be understood as an incomprehensive mystery, an unacceptable absurd or can be treated as a taboo or a social representation of a personal universe. Conclusion: Although a patient can be cured through standard treatment, he needs either special or palliative care.

Access source material through DOI
Original source (some source materials require subscription or permission to access)

Intergenerational Caregivers of Parents With End-Stage Heart Failure

Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF). Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility , and personal benefits and challenges. Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.

Access source material through DOI

Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia: A systematic review

Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced. 

Access source material through DOI

Gender Differences in Spousal Caregivers’ Care and Housework: Fact or Fiction?

Many studies reveal a gender gap in spousal care during late life. However, this gap could be an artifact of methodological limitations (small and unrepresentative cross-sectional samples). Using a data set that overcomes these limitations, we re-examine the question of gender differences in spousal care and housework adjustment when a serious illness occurs.We use biannual waves between 2001 and 2015 of the German Socio-Economic Panel Study and growth curve analyses. We follow couples longitudinally (identified in the household questionnaire) to analyze shifts in spousal care hours and housework plus errand hours that occur as a response to the spousal care need. We test for interactions with levels of care need and with gender.We found that men increase their care hours as much as women do, resulting in similar care hours. They also increase their housework and errand hours more than women do. Yet at lower levels of spousal care need, women still do more housework and errands because they spent more time doing housework before the illness. Even in a context of children’s decreasing availability to care for parents, male spouses assume the required caregiving role in systems relying on a mixture of public and private care.

Access source material through DOI

What is important at the end of life for people with dementia? The views of people with dementia and their carers

Background: Approaching end of life is often a time of vulnerability; this is particularly so for people with dementia and their families where loss of capacity and the ability to communicate, make assessment and shared decision-making difficult. Research has consistently shown that improvements in care and services are required to support better quality and more person-centred care for people with dementia towards and at end of life. However, the views of people with dementia about what factors contribute to high-quality care at this time are a neglected area. Aim: The aim of this study was to identify the aspects of end-of-life care for people with dementia that are most important to them and their carers. Design: Q-methodology, a mixed method combining qualitative and quantitative techniques to study subjectivity, was used to identify the views of people with mild dementia, their family carers and bereaved carers on end-of-life care for people with dementia. Fifty-seven participants were included in the study. Results: Four distinct views were identified: family involvement, living in the present, pragmatic expectations and autonomy and individuality. Some areas of consensus across all views included compassionate care, decisions being made by healthcare professionals and information availability when making decisions. Conclusion: Our findings reveal several different views on what is important about end-of-life care for people with dementia; therefore, a ‘one-size-fits-all’ approach to care is unlikely to be most appropriate. Notwithstanding the differing viewpoints could provide a framework for service providers and commissioners for future care.

Access source material through DOI

A “separation of worlds”: The support and social networks of family carers of people with dementia at the end of life, and the possible role of the internet

Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face-to-face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi-structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016–2017). Interviews were audio-recorded, transcribed, and analysed using thematic analysis. An overarching theme of the “separation of worlds” (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction. 

Access source material through DOI

Decision making for people living with dementia by their carers at the end of life: A rapid scoping review

Background: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. Conclusion: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.

Access source material through DOI

Caregivers for people at end of life in advanced age: knowing, doing and negotiating care

Background: the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting: people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3–6 months after an older person’s death and invited to take part in the current study. Subjects: fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Maori and 32 non-Maori. The majority of the 58 carers were in their 60 s and were women. Methods: guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within: the transcripts, and feedback and discussion with participants. Results: we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks. Conclusions: this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age.

Access source material through DOI

It’s all about the relationship: cognitively intact mother–daughter care dyads in hospice at home

Purpose of the Study: Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context. Specific aims were to describe and interpret how mothers and daughters: (a) perceive relationship quality and (b) perceive how relationships have developed over time through health, chronic illness, and hospice. Design and Methods: Semi-structured interviews were used to explore interdependent perceptions of relationship quality in 10 terminally-ill mother–adult daughter care dyads. A novel method of qualitative dyadic analysis was developed to analyse dyads in close parallel at both individual/descriptive and dyadic/interpretive levels, staying true to qualitative rigor. Results: A relationship quality spectrum emerged, from Close Friendship to Doing My Duty dyads. Women in Close Friendships revealed concordant narratives and emotionally satisfying relationships; women in neutral or troubled relationships revealed discordant relational stories. In these latter dyads, mothers reported more positive narratives; daughters spoke of relational problems. Implications: This work suggests deeper exploration of mother–daughter dyads within the hospice context and interventions at both individual and dyadic levels to serve relational needs of the dying and their families. The qualitative dyadic approach also offers utility for relational investigations of any dyad.

Access source material through DOI

Dementia caregivers’ coping with pre-death grief: effects of a CBT-based intervention

Objectives: Pre-death grief plays a significant role in dementia caregiving, and has adverse impacts on caregivers. It was the purpose of the present study to examine whether a cognitive-behavioural intervention including a grief intervention module could increase caregivers’ coping with pre-death grief and whether these effects could be maintained as of a six-month follow-up assessment. Method: In a randomized-controlled trial examining the effectiveness of a cognitive-behavioural intervention, 273 caregivers were allocated to either an intervention or control group. Intervention group participants received 12 therapy sessions over six months; all participants completed a measure of pre-death grief. The analysis was conducted using latent change models. In the first model, study group was included as a predictor of change in pre-death grief; subsequent models also included care situation and sociodemographic variables. Results: The burden due to pre-death grief was reduced for intervention but not control group participants at the time of the six-month follow-up assessment (Cohen's d = −0.361). When controlling for changes in the care situation and sociodemographic variables, the treatment effect was also found in the assessment completed post intervention (Cohen's d = −0.248). Conclusion: Results indicate that a cognitive-behavioural intervention including grief-specific strategies can successfully foster caregivers’ coping with loss and reduce burden of pre-death grief.

Access source material through DOI

Carers of people affected by cancer and other long-term conditions at end of life: A qualitative study of providing a bespoke package of support in a rural setting

Background: A UK charity, Macmillan Cancer Support has funded a local intervention, whereby carers of people affected by cancer and other long-term conditions at end of life are offered a bespoke package of support. Aim: This short report describes the qualitative experiences of carers in receipt of the intervention. Design: Qualitative research utilising in-depth interviews. Discussions were digitally recorded and transcribed verbatim. Data were analysed using thematic analysis. Setting/participants: Participants were carers (n = 10) in receipt of the intervention. Interviews were conducted between August and September 2014 in Lincolnshire (England). Results: Five themes from the interviews were identified: (1) Awareness and advertising, (2) focus of support on the carer, (3) modes of communication, (4) personal attributes and skills of the support worker (5) streamlining and signposting. Conclusion: The intervention was successful within a social care setting. The participants had no overtly negative opinions on the service in its current format and all held it in high regard. Carers felt a sense of reassurance from having background support and maintained that their situation would have been worse had this support not been there.

Access source material through DOI

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

Access source material through DOI

Caregiver characteristics and bereavement needs: findings from a population study

Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. Aim: The authors compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’. Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.

Access source material through DOI

Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: a qualitative study

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Access source material through DOI

A National Profile Of End-Of-Life Caregiving In The United States

To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.

Access source material through DOI

Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

Access source material through DOI

Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

Context. Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes. Objectives. To explore the literature focused on family caregivers' (FCGs) experiences of medication management for patients being cared for and dying at home. Methods. This literature review takes a critical interpretive synthesis approach to the review of 15 identified articles. Results. Findings show that FCGs can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and are often judged by professional standards. Five key themes identified particular issues around administration, organizational skills, empowerment, relationships, and support. Conclusion. As increasing demands are placed on FCGs, there remains limited acknowledgment or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, FCGs need access to 24 hours of support and medication reviews to rationalize unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Access source material through DOI

Dyadic psychological intervention for patients with cancer and caregivers in home-based specialized palliative care: The Domus model

Objective: Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. Method: The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions. Results: Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members. Significance of Results: Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC

Access source material through DOI

Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey

Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers’ own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data. Design: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers’ psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient’s last 3 months of life. Participants: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 (N = 6477–6790). Results: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers’ general health scores were lower than population scores, median 75 (interquartile range, 50–80) versus 80 (interquartile range, 70–90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers. Conclusion: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.

Access source material through DOI

Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.

Access source material through DOI

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients’ goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients’ symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.

Access source material through DOI

Families in the intensive care unit : a guide to understanding, engaging, and supporting at the bedside

This text is one of the first comprehensive resources on understanding and working with families in the intensive care unit. The text provides a conceptual overview of the Family ICU Syndrome, a constellation of physical morbidity, psychopathology, cognitive deficits, and conflict. Outlining its mechanisms, the book presents a guide to combating the syndrome with an interdisciplinary team. The text represents the full array of the interdisciplinary team by also spotlighting administrative considerations for health care management and approaches to training different members of the health care team. Family voices are featured prominently in the text as well. The book also addresses the complete trajectory of needs of care, including survivorship and end-of-life care. Written by experts in the field, Families in the Intensive Care Unit: A Guide to Understanding, Engaging and Supporting at the Bedside is a state-of-the-art reference for all clinicians who work with families in the ICU.

Original source (some source materials require subscription or permission to access)

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Objectives: The objective of the study is to explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life. Methods: We used mixed methods including a survey (48 responses/51% response rate) and semistructured interviews (n = 12) with clinicians working in UK memory services accredited by the Memory Services National Accreditation Programme. We used descriptive statistics to report survey findings and thematically analysed interview and survey qualitative data. Results: Surveys: services routinely discussed with carers the progressive nature of dementia (89%), legal arrangements (health: 72%; finances: 74%), advance care planning (63%), and implications of loss of capacity (61%). Fewer services routinely discussed the terminal nature of dementia (41%) and meaning of death (11%) with carers. Most (89%) agreed that these conversations were in line with their role. Interview findings corresponded with survey findings. Themes included diagnosis considered too early to discuss end of life, discussions being inconsistent with a “living well” approach, people with dementia being resistant to conversations, and discussions of spirituality crossing professional boundaries. Services' capacity for follow‐up with carers impacted on ability to broach these topics. Conclusions: More in‐depth and distressing topics such as end of life and advance care planning require longer follow‐up to establish relationships to broach difficult topics. Variability in follow‐up practices between services created inequity in the extent to which memory services could address these topics. More research is required to investigate the best method for broaching these topics with carers and the person with mild dementia within different health care contexts.

Access source material through DOI

The experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study

Aim: To explore specialist and generalist palliative care provision for people with non‐malignant respiratory disease, in rural and urban areas in the North and Republic of Ireland. Background: Globally, palliative care is recommended as an appropriate healthcare option for people with advanced non‐malignant lung disease. Yet, there is limited evidence regarding the integration of palliative care for this client group. Design: Qualitative study. Methods: Convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from two rural and two urban sites on the Island of Ireland. Data were collected throughout 2012 and 2013 through semi‐structured interviews with carers of patients with Chronic Obstructive Pulmonary Disease (N = 12), interstitial lung disease (N = 4) or bronchiectasis (N = 1) who had died 3–18 months previously; and four focus groups with healthcare professionals. Data were analysed using a thematic analysis framework. Results: Carers’ interviews yielded three overarching themes: (1) lack of preparedness for death, due to ambiguity regarding disease trajectory; (2) lack of consistency in palliative care delivery, in relation with the receipt of generalist and specialist palliative care; and (3) role ambiguity, related to their caregiving role. Focus groups identified two overarching themes: (1) barriers to appropriate palliative care; and (2) the future direction of palliative care for patient with non‐malignant respiratory disease. Conclusion: The uncertain disease trajectory was not only experienced by carers but also healthcare professionals. Although referral to specialist palliative care services was perceived as increasing, the availability and coordination of generalist and specialist palliative care services were fragmented and varied dependent on geographical location.

Access source material through DOI

Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial

Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

Access source material through DOI

A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia

Background Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities. Objective To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia. Design Qualitative methodology using focus groups and semi-structured interviews and thematic analysis methods. Settings and participants Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care. Results Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life. Conclusions This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life.

Access source material through DOI

Good communication with family of people with dementia at end of life: reflections of an Admiral Nurse

As the incidence of dementia is increasing, so health and social care professionals are facing a challenge to deliver good quality end-of-life care. Historically, it is not an area that has been afforded much attention until recently, but interventions such as Admiral Nursing are well placed and equipped to work with and support families at this time. It is essential, in supporting a family to live as well as they can following a diagnosis of dementia, to facilitate dying well with or from dementia. This article uses a case study approach, combined with professional reflective practice, to explore the importance of good communication in the last few months, weeks and days of life in a family affected by dementia.

Access source material through DOI

A Discourse Analysis: One Caregiver's Voice in End-of-Life Care

Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.

Access source material through DOI

Meeting the needs of carers of people at the end of life

Carers have a vital role in end of life care in all settings. They are essential in enabling people to live at home at the end of their lives. Carers give and receive care, and have a range of support needs related to this complex role. This article explores the context of caring at the end of life and considers the experience of carers, in particular those who have a non-professional and unpaid relationship with someone who is at the end of life, and the support they require.

Access source material through DOI

Caregiving as mobility constraint and opportunity: married daughters providing end of life care in northern Ghana

In the global south where care services are sparse and familial care remains practically and socially important, end of life care often occurs within families. Furthermore, in health care related policy development, care is often assumed to be ensured by ‘traditional’ norms of extended family relationships. In this context, the demands of providing care may require care providers to relocate, as well as reorganize their everyday responsibilities. This article contributes to geographies of care by offering an examination of the mobility constraints experienced by married and externally-resident daughters seeking to provide end of life care to a parent in northern Ghana. Drawing on ethnographic research, I examine how particular familial relationships are embedded with socially constructed labour obligations, leading to conflicting responsibilities at a parent’s end of life. I then consider how a woman as a daughter works to overcome these constraints to provide end of life care. I conclude that understanding the mobility of care providers can contribute to avoiding potentially damaging assumptions of ‘traditional’ norms of care and is an important consideration towards understanding the geographies of care in the rural global south.

Access source material through DOI

Prevalence and predictors of conflict in the families of patients with advanced cancer: A nationwide survey of bereaved family members

Objectives Family conflict has several adverse impacts on caregivers. Thus, there is significant value in determining the prevalence and predictors of family conflict, which can enable the health care provider to intervene if family conflict arises during end-of-life care. Accordingly, we aimed to explore the prevalence and predictors of conflict among the families of patients with advanced cancer who died in palliative care units. Methods This study was a nationwide multicenter questionnaire survey of bereaved family members of cancer patients who died in Japanese palliative care units participating in evaluation of the quality of end-of-life care. Results We sent out 764 questionnaires, and 529 questionnaires (69.2%) were returned. As 70 family members refused to participate and we could not identify the answers in one questionnaire, we analyzed a total of 458 responses. The average Outcome-Family Conflict score was 13.5 ± 4.9 (maximum score: 39.5), and 42.2% of family members reported at least one family conflict during end-of-life care. Greater family conflict was significantly associated with younger family age, with family members asserting control over decision making for patient care and with communication constraints among family members, although absent family members "coming out of the woodwork" reduced family conflict. Conclusions Many families of patients with advanced cancer experienced conflict during end-of-life care. Family members asserting control over decision making and communication constraints among family members after diagnosis of cancer can predict the occurrence of family conflict. Absent family members "coming out of the woodwork" might reduce family conflict in particular cultures.

Access source material through DOI

Providing care for a person with late-stage dementia at home: What are carers' experiences?

Background It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home. Method Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis. Results Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief (2) Parenting the parent (3) Seeking support (4) Death, dying and life after death. Conclusion Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment.

Access source material through DOI

Pain Management Concerns From the Hospice Family Caregivers' Perspective

Background: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers’ perspectives. Objectives: To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers. Design: We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers’ interviews from a randomized clinical trial. Setting/Participants: We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient. Results: The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver’s medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework. Conclusion: The study provided an investigation on hospice family caregivers’ difficulties in pain management. The results can inform health-care providers and researchers of family caregivers’ challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.

Access source material through DOI

Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice

Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision. Design: A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content. Data sources: Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review. Results: Carers’ experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers’ experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing. Conclusion: Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement.

Access source material through DOI

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available.

Access source material through DOI

Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included 7 men, 7 women, and mean age of 59 years 3 were bereaved 12 were partners 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation (2) availability of palliative care (3) information and communication about illness, prognosis, and death and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

Access source material through DOI

A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool

Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.

Access source material through DOI

Validation of a model of family caregiver communication types and related caregiver outcomes

Objective: Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types - Manager, Carrier, Partner, Lone - each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. Method: This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Results: Corroboration between fieldnotes and self-reported communication for caregivers ([i]n[/i] = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. Significance of results: This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types. 

Access source material through DOI

Measuring What Matters for Families and Caregivers: But How? (SA505)

An abstract of a study by Tucker et al defining the barriers and opportunities associated with measuring family and caregiver satisfaction with palliative care services in inpatient and ambulatory settings is presented. Hospital Consumer Assessment of Healthcare Providers and Systems surveys which are mandated by CMS and the subsequent Value Based Purchasing payment system has brought increased attention to the potential effects of quality PC services through an emphasis on communication skills, coordination of care, pain management and goals of care discussions.

Objectives

  • Define the barriers and opportunities associated with measuring family and caregiver satisfaction with palliative care services in inpatient and ambulatory settings.
  • Review the Measuring What Matters (MWM) project within AAHPM and the unique challenges in this arena.•
  • Delineate the next steps in linking palliative care patient and family experience data and measurement to hospitals that are focused on patient perception of care surveys.
Access source material through DOI

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews ([i]n[/i] = 25), observations of agency home care visits ([i]n[/i] = 9) and analyses of policy and home care agency documents ([i]n[/i] = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences. 

Access source material through DOI

The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL) 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04 adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

Access source material through DOI

Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process

Background: there are many people with advanced cancer who are cared for in the community, though little is known about patients' and family members' lived experiences during discharge from hospital to home. Objectives: to describe the experiences of the patient-family caregiver dyad during the transition from hospital to home at a National Cancer Institute in Colombia. Methods: a descriptive phenomenological approach was taken for this study. Results: Forty-one nominal codes emerged, comprising seven themes that describe the experience of the individual in palliative care and their family caregiver during the transition from hospital to home care. Conclusions: the patient-family caregiver dyad have to deal with symptoms while being confronted with the prognosis and progression of the disease at home. The economic costs in acquiring supplies needed for proper care provision are considerable. In addition there are administrative fees from consultations and accessing the health services. Emotional and spiritual support for the dyad is required. 

Access source material through DOI

Caring at home until death: enabled determination

Purpose: The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. Method: A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. Results: Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. Conclusions: Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

Access source material through DOI

The Use of Life-Sustaining Procedures in the Last Month of Life Is Associated With More Depressive Symptoms in Surviving Spouses

Context Family caregivers of individuals with serious illness who undergo intensive life-sustaining medical procedures at the end of life may be at risk of negative consequences including depression. Objectives The objective of this study was to determine the association between patients' use of life-sustaining procedures at the end of life and depressive symptoms in their surviving spouses. Methods We used data from the Health and Retirement Study, a longitudinal survey of U.S. residents, linked to Medicare claims data. We included married Medicare beneficiaries aged 65 years and older who died between 2000 and 2011 (n = 1258) and their surviving spouses. The use of life-sustaining procedures (i.e., intubation/mechanical ventilation, tracheostomy, gastrostomy tube insertion, enteral/parenteral nutrition, and cardiopulmonary resuscitation) in the last month of life was measured via claims data. Using propensity score matching, we compared change in depressive symptoms of surviving spouses. Results Eighteen percent of decedents underwent one or more life-sustaining procedures in the last month of life. Those whose spouses underwent life-sustaining procedures had a 0.32-point increase in depressive symptoms after death (scale range = 0-8) and a greater likelihood of clinically significant depression (odds ratio = 1.51) compared with a matched sample of spouses of those who did not have procedures (P < 0.05). Conclusion Surviving spouses of those who undergo intensive life-sustaining procedures at the end of life experience a greater magnitude of increase in depressive symptoms than those whose spouses do not undergo such procedures. Further study of the circumstances and decision making surrounding these procedures is needed to understand their relationship with survivors' negative mental health consequences and how best to provide appropriate support. 

Access source material through DOI

The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life

Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.

Access source material through DOI

P77 Levels of psychological distress and predictors of distress in family carers of patients with cancer at end of life

Background Family carers provide substantial support for patients at end-of-life. It is important to understand how caregiving impacts on carers to guide appropriate interventions to improve carer wellbeing.  The aims of this study were to investigate levels of psychological distress and predictors of distress during end of life care giving in a national sample of family carers of people with cancer. Methods Four-month post-bereavement postal survey of a national census sample of relatives reporting a death from cancer 1–16th May 2015. Retrospective data collected included carer demographics, carers’ psychological distress (GHQ-12), care giving hours and tasks, out of pocket expenses, support from informal and formal care, other demands on carers’ time (work, other caregiving responsibilities, voluntary work), opportunities for respite, patient symptoms and activities of daily living (ADL). Exploratory univariate analyses were used to describe the data and inform multivariate analysis. Results Surveys were completed by 1504 (28.5%) of 5271 carers. Carers’ median GHQ distress score was 7 (IQR 4–9), where a score>=4 indicates ‘caseness’ for psychological distress. Univariate analysis results at p<0.05 indicate that increased hours of caregiving, other caring responsibilities and the patient‘s worsening symptoms and reduced ADL increased distress. Formal support, hours of volunteering and respite were associated with reduced distress. Carer age, sex, work situation and level of deprivation also related to distress. Multivariate analysis indicates that the total hours of care giving, patients’ psychological symptoms and the carer being female was related to increased distress, whilst formal service provision was related to reduced distress. The final model explained 19% of variance in distress. Conclusion A considerable majority of family carers suffer clinically significant levels of psychological distress during end of life care giving. Objective care burden in the form of total hours of caregiving is associated with increased distress. Being female and caring for a patient with psychological symptoms appears to increase distress, whereas support from formal care services can ameliorate distress. Whilst the final model explains a modest amount of variance in carer distress, it indicates that reduction in objective care burden and support from services can have an important, positive impact.

Access source material through DOI

Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia. Methods Semi-structured interviews were conducted with 34 family members who had formally or informally taken on the role of surrogate decision-maker. Thematic analysis of interviews was undertaken, which involved identifying, analysing and reporting themes arising from the data. Results Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance. Most participants reported that there was not an advance care plan in place for the person living with dementia. Even when the prior wishes of the person with dementia were known, the process of decision-making was often fraught with complexity. Discussion Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.

Access source material through DOI