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).
 

Post-traumatic growth of family members of deceased cancer patients and related factors in Japan: A cross-sectional study

Objectives: This study examines the post-traumatic growth (PTG) of bereaved families who care for cancer patients and related factors in Japan. Methods: Participants included 1298 members of bereaved families of cancer patients (aged 20 or older). An anonymous self-administered questionnaire on PTG, coping, and social support was mailed to 496 bereaved families who provided written informed consent. Results: Responses were obtained from 476 bereaved families; however, since 28 families had missing data, 448 were included for the analyses. The mean age of participants was 61.4 years: 69% women and 45% spouses. The average age of the deceased was 72.8 years old for men (59%). The PTG score of the bereaved families was higher for women than for men (p < 0.0001). Moreover, the Post-Traumatic Growth Inventory Score for those above 65 years of age was higher than of those below 65 years of age (p < 0.0001). A regression analysis confirmed that emotion-focused coping, problem-focused coping, relationship with the deceased, advanced age of bereaved families, and emotional support impacted PTG. Conclusion: The significance of the deceased for the bereaved, bereaved family members being older in age, emotion-focused coping, problem-focused coping, and emotional support suggest that these aspects are associated with psychological growth in terms of accepting the death of a loved one and moving forward. It is necessary to evaluate the relationship between the bereaved family and the deceased, the age and gender of the bereaved, coping behaviors, and support status and establish a higher quality bereaved family care system. 

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

Patient, family and productivity costs of end-stage renal disease in the Netherlands; exposing non-healthcare related costs

Background: Healthcare costs related to ESRD are well-described, but broader societal costs of ESRD are less known. Objectives: This study aimed to estimate patient and family costs, including informal care costs and out-of-pocket costs, and costs due to productivity loss related to ESRD, for patients receiving dialysis and living with a kidney transplant, using a bottom-up approach. Methods: A total of 655 patients were asked to complete a digital questionnaire consisting of two standardised instruments (iMCQ and iPCQ) from November 2016 through January 2017. We applied a retrospective bottom-up cost estimation by combining data from the questionnaire with unit prices from the Dutch costing manual. Results: Our study sample consisted of 230 patients, of which 165 were kidney transplant recipients and 65 received dialysis. The total annual non-healthcare related costs were estimated at €8284 (SD: €14,266) for transplant recipients and €23,488 (SD: €39,434) for dialysis patients. Costs due to productivity loss contributed most to the total non-healthcare costs (66% for transplant recipients and 65% for dialysis patients), followed by informal care costs (26% resp. 29%) and out-of-pocket costs, such as medication and travel expenses (8% resp. 6%). Conclusion: By exposing patient, family and productivity costs, our study revealed that dialysis and transplantation are not only costly within the healthcare system, but also incur high non-healthcare costs (18–23% resp. 35% of the total societal costs). It is important to reveal these types of non-healthcare costs in order to understand the full burden of ESRD for society and the potential impact of new therapies. 

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

Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study

Background: Inclusive universal health coverage requires access to quality health care without financial barriers. Receipt of palliative care after advanced cancer diagnosis might reduce household poverty, but evidence from low-income and middle-income settings is sparse. Methods: In this prospective study, the primary objective was to investigate total household costs of cancer-related health care after a diagnosis of advanced cancer, with and without the receipt of palliative care. Households comprising patients and their unpaid family caregiver were recruited into a cohort study at Queen Elizabeth Central Hospital in Malawi, between Jan 16 and July 31, 2019. Costs of cancer-related health-care use (including palliative care) and health-related quality-of-life were recorded over 6 months. Regression analysis explored associations between receipt of palliative care and total household costs on health care as a proportion of household income. Catastrophic costs, defined as 20% or more of total household income, sale of assets and loans taken out (dissaving), and their association with palliative care were computed. Findings: We recruited 150 households. At 6 months, data from 89 (59%) of 150 households were available, comprising 89 patients (median age 50 years, 79% female) and 64 caregivers (median age 40 years, 73% female). Patients in 55 (37%) of the 150 households died and six (4%) were lost to follow-up. 19 (21%) of 89 households received palliative care. Catastrophic costs were experienced by nine (47%) of 19 households who received palliative care versus 48 (69%) of 70 households who did not (relative risk 0·69, 95% CI 0·42 to 1·14, p=0·109). Palliative care was associated with substantially reduced dissaving (median US$11, IQR 0 to 30 vs $34, 14 to 75; p=0·005). The mean difference in total household costs on cancer-related health care with receipt of palliative care was −36% (95% CI −94 to 594; p=0·707). Interpretation: Vulnerable households in low-income countries are subject to catastrophic health-related costs following a diagnosis of advanced cancer. Palliative care might result in reduced dissaving in these households. Further consideration of the economic benefits of palliative care is justified. Funding: Wellcome Trust; National Institute for Health Research; and EMMS International. 

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

Involvement of Jordanian Patients and Their Families in Decision Making Near End of Life, Challenges and Recommendations

Objectives: This study aims to explore the challenges in involving patients and their families in decision making near end of life and to provide recommendations to overcome these challenges. Methods: A qualitative descriptive phenomenological approach was used with a purposive sample of 8 patients, 7 family caregivers, 7 nurses, and 6 physicians from 2 institutions that provide palliative and end-of-life care services in Jordan. Data were collected using interviews with patients and family caregivers and focus group discussions with nurses and physicians. Colaizzi's method was used to analyze the data. Findings: The thematic analysis revealed 5 themes representing the participants' experiences of challenges with decision making near end of life. The identified challenges are (1) struggle with lack of information; (2) improper communication; (3) patient's or family's decision: the cultural taboo; (4) health care providers prefer staying in their comfort zone; and (5) the paradox of surviving and letting go. In addition, the participants endorsed several recommendations to raise public awareness of palliative and end-of-life care, amplify the patients' voice, and raise the bar of communication sensitivity. Conclusions: Decision making near the end of life is a challenge. However, the current study highlighted several areas for improvement that can improve the process and optimize patients' and their families' involvement. 

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

How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

Background: Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods: Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results: We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions: Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

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

Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support

Objective: This study aimed to examine family carers’ willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress. Method: Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers’ Support Need Assessment Tool. Results: Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in “dealing with your feelings and worries” and “looking after your own health. Conclusions: Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals’ additional support.

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

Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context

Background: Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one's direct social network, lots of caregivers persevere. Objectives: To better understand why, we aimed to specify how normative elements - i.e. what is considered good or valuable - shape family caregivers' experiences in Dutch home settings. Methods: From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. Results: Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. Conclusions: Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot - and perhaps should not - simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

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

Family caregivers’ perceived communication self-efficacy with physicians

Objective: Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone. Method: A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire. Results: An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions. Conclusions: Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.

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

Family caregivers' perceptions about patients' dying and death quality influence their grief intensity

Aims and objectives: To understand the influence of family caregivers' perceptions about patients' dying and death quality on their grief intensity. Background: Dying patients and their family caregivers face life-limiting illness together, and they work jointly to negotiate shared understandings and mutual adaptation to losses. Methods: Cross-sectional data were collected via an online survey. The manuscript followed the STROBE report guideline. Methods: Family caregivers of patients who had died within 8–365 days prior were recruited. The Quality of Dying and Death Questionnaire (QDDQ) (translated into Mandarin) and the Chinese Grief Reaction Assessment Form (GRAF) were used to measure the two key variables. Multivariate linear regression was performed to explore the links between the two variables while controlling for potential confounders. Results: Data were collected from 170 bereaved Chinese caregivers, and 150 cases were involved in the analysis. The four-factor structure of the QDDQ was appropriate for Chinese participants. After controlling whether end-of-life care was provided and families' satisfaction with physicians' and nurses' services, regressions revealed that more intense grief of the bereaved caregivers was associated with better symptom control for and worse transcendence of the deceased patient. Moreover, those who believed that the deceased had fulfilled his or her family duties before death experienced less intense grief, and the participant's relationship with the deceased also made a difference. Conclusion: Two aspects of patients' dying and death quality perceived by family caregivers, namely symptom control and transcendence, have opposite influences on caregivers' grief intensity. 

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

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

Background: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. Objectives: This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden. Methods: This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden. Results: Most of the 746 relatives were the patient’s partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR =.87) and were less resilient (OR =.76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR =.96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR =.39). Conclusion: A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation. Trial registration number: NTR6584 (date of registration: 30 June 2017) 

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

Expressing grief through metaphors: family caregivers’ experience of care and grief during the Covid-19 pandemic

Background: The COVID-19 pandemic has disrupted thousands of individuals’ experience of caregiving and grief. Objectives: This qualitative study aimed to gain in-dept understanding of family caregivers’ lived experiences of caregiving and bereavement in the context of the COVID-19 pandemic in Quebec, Canada. The study also aimed at providing new insight about caregiving and bereavement by analysing the metaphors family caregivers use to report their experiences. Methods: The design of this study was guided by an interpretative phenomenological approach. In-depth interviews were conducted with twenty bereaved family caregivers who had lost a loved one during the first waves of the pandemic. Results: Results indicate that bereaved family caregivers lived and understood their experience in terms of metaphoric cut-offs, obstructions and shockwaves. These three metaphors represented the grief process and the bereaved’s quest for social connection, narrative coherence and recognition. Conclusion: By identifying the meaning of the bereaved’s metaphors and the quest they reveal, our study underlines the singularity of pandemic grief and points to the value and meaning of caregiving with regard to the grieving process.

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

Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China

Background: Informal caregivers are the main source of care for the critically ill, especially after discharge or during the terminal stages at home. However, the concern for informal caregivers is often overshadowed by critically ill patients. Objectives: The purpose of this study is to determine the influencing factors of the subjective burden of informal caregivers and to seek solutions accordingly. Methods: Between July and August 2019, a cross-sectional study was conducted in Shandong, China, focusing on family caregivers and critically ill patients. Subjective caregiver burden was measured by the Chinese version of Zarit Burden Interview (ZBI). The stress process model was used to identify conditions relevant to the caregiving burden and to assess their impact on family caregivers. Results: 554 samples were selected for analysis. The average scores of Zarit Caregiver Burden Interview (ZBI) scores in this study was 30.37±19.04 (n=554). ZBI scores of older, less educated, and spouse caregivers were significantly lower (4.12; 95%CI, 0.42 to 7.81; P =0.029). Objective and subjective burdens increased proportionally. Secondary role stress factors included the higher out-of-pocket (OOP) costs of critical diseases and lower household income, both of which increased caregivers’ subjective burdens (1.28; 95%CI, -0.06 to 2.63; p=0.062). Formal medical aid systems played a positive role in reducing subjective caregiving burdens (-7.31; 95%CI, -13.23 to -1.40; p=0.016). Conclusions: Health policies should address both the direct medical burdens and the intangible psychological burdens of critical diseases. 

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

Exploration of caregiver experiences of conservatively managed end‐stage kidney disease to inform development of a psychosocial intervention: The acorn study protocol

Background: End‐stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs.  Objectives: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi‐structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers. 

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

Explore the Bereavement Needs of Families of Children With Cancer From the Perspective of Health Caregivers: A Qualitative Study

Background: The experience of bereavement is associated with severe physical, psychological, social and spiritual reactions in the parents of children with cancer. Because of that, the families of these children need to receive bereavement services. Objectives: The aim of this study was to explore the bereavement needs of families of children with cancer from the perspective of health caregiver as people who have a close relationship with the child and the family. Methods: This qualitative descriptive study design in. In total 15 semi-structured interviews were conducted using a purposive sampling in 2018. Interviews were recorded and transcribed and conventional content analysis was used to analysis the data. The Trustworthiness of the data were assessed according to the criteria of Lincoln and Guba. Results: From the data analysis, needs of the bereaved family were categorized in three dimension including “achieving peace,” “Abandoned family access to care,” and “continuing care.” The category of “achieving peace” includes spiritual and existential support, companionship with the family, contact with other bereaved families, support in passing and accepting the bereaved and continuing empathetic communication with the family, the category “Abandoned family access to care” includes the promotion of family self-control, awareness of end-of-life care to the family, and the category of “continuing care,” includes formal and informal family care and individualized care. Conclusion: It is necessary for the care team to pay special focus to family considering the needs of the family about the death of the patient and the challenges of the family bereavement period. It is recommended that members of the health care team should be trained in assessing family needs, identifying risks of adverse outcomes, continuing care, and providing resources during bereavement. The needs of the bereaved family should also be addressed in their care plan. 

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

The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review

Background: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease, associated with impaired quality of life for patients and caregivers. As treatment is largely supportive, early involvement of palliative care (PC) is recommended as standard of care. Despite this, literature surrounding PC information needs is limited. Objectives: To explore the PC information needs of patients with ALS and their caregivers and identify gaps in the literature. Methods: A scoping review using MEDLINE, EMBASE, CINAHL and PsycINFO databases (2000-2019) was conducted. Articles examining PC information needs as stated by ALS patients and/or current/bereaved caregivers were included. Studies examining other diagnoses and those focused on healthcare workers were excluded. Thematic synthesis was used to summarize and identify prevalent domains and themes in the literature. Results: 581 articles underwent primary screening, with thirty-two ultimately included (26 original articles, six reviews). Fourteen examined information needs of both patients and caregivers, 13 caregivers only, 5 patients only. The most common PC information needs were as follows: for patients, disease course/prognosis (n = 10), general disease information (n = 9), decision-making (n = 7) and symptoms (n = 6); for caregivers, services and resources (n = 15), disease course/prognosis (n = 14), general disease information (n = 13) and skills (n = 10). There was substantial variability in information needs, both between patients and caregivers and among members of the same group. Conclusion: ALS patients and caregivers have unique and varying PC information needs. Future research should better characterize these needs to improve patient and caregiver quality of life. The delivery of information must be tailored to individual patient or caregiver preferences. 

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

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

Background: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life. A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life. Methods: A realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process. Results: Twenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners. Conclusions: Primary care practitioners’ use of tools to assess patients/families’ needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families’ outcomes. 

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

Effects of family-based dignity intervention and expressive writing on anticipatory grief of family caregivers of patients with cancer: a study protocol for a four-arm randomized controlled trial and a qualitative process evaluation

Background: Family caregivers of dying cancer patients are affected by grief experiences and bereavement complications. Several approaches such as psycho-emotional care and an increase in spirituality have been suggested to diminish these complications. However, the knowledge about the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients is limited. This is a study protocol describing a hospital-based mixed-methods study on the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients. Methods: This mixed-methods study will be done in an embedded explanatory design with two quantitative and qualitative phases. In the first phase (quantitative), a randomized clinical trial will be done, in which 200 family caregivers of dying cancer patients will be randomly assigned to one of the four groups: family-based single dignity intervention (group 1), expressive writing intervention (group 2), combined family-based single dignity intervention and expressive writing (group 3), and control (group 4). At baseline, 1 week and 2 weeks after the interventions, anticipatory grief will be assessed by a 13-item anticipatory grief scale. After the quantitative phase, the qualitative phase will be conducted through the conventional content analysis approach of Granheim and Lundman, in which an individual semi-structured interview will be taken from participants in the first phase to collect data on their experiences on interventions. Finally, data from the quantitative and qualitative phases will be analyzed and discussed. Discussion: Family caregivers of dying cancer patients usually experience depression, anxiety, and psychological distress due to isolation and inadequate social support. Psychological interventions such as dignity and expressive writing interventions may help caregivers to obtain a better understanding of themselves and to increase their abilities to cope with caregiving difficulties. Therefore, there is a need for a comprehensive study confirming the effects of mentioned interventions on family caregivers of dying cancer patients. Trial registration: Iranian Registry of Clinical Trials (www.irct.ir) identifier: IRCT20210111050010N1. Date of trial registration: Feb 6, 2021. This is the first version of this protocol. 

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

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial

Background: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. Objectives: This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349. Date and version identifier: 20211209_DIAdIC_Protocol_Article. 

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

Evaluation of the usability, accessibility and acceptability for a family support intervention (Family-Focused Support Conversation) for end of life care discharge planning from hospital: A participatory learning and action research study

Background: Family support is internationally recognised as integral to palliative care. However, during end of life care discharge planning from hospital, families report a lack of opportunity to discuss their concerns or contribute their knowledge of the ill family member and consequently feel unheard and unsupported. To counter this experience, we co-produced the Family-Focused Support Conversation, a novel research-informed intervention, to guide discussion of family concerns about the meaning, implications and manageability of end of life caregiving following discharge. Objectives: To qualitatively evaluate the usability, accessibility and acceptability of the Family-Focused Support Conversation in hospital and factors which promote and inhibit implementation. Design: Participatory Learning and Action Research design, guided by Normalization Process Theory, a social implementation theory. Settings: Implementation was undertaken by 45 clinical co-researchers, specialist nurses (n=42) and occupational therapists (n=3), working in specialist palliative care teams in twelve hospitals (within seven NHS Trusts) across England, over a six-month period. Methods: During implementation clinical co-researchers collected reflective data about intervention delivery (n=110), participated in regular in-depth conversations of implementation with the research team (n=26 meeting records) and in a final evaluation meeting (n=11 meeting records). Data from family members who had received the intervention, comprised brief questionnaires (n=15) and in-depth semi-structured interviews (n=6). Data were qualitatively analysed, informed by Normalization Process Theory and Family Sense of Coherence Theory. Results: Clinical co-researchers found the intervention eminently usable and accessible. They reported a shift in family support from informing family members about patient healthcare needs, to family concerns such as how they made sense of the meaning of discharge, and how to provide family-orientated care. Family members found the intervention acceptable, they felt supported and able to make informed decisions about their role in providing end of life care. Implementation was positively influenced by coherence between the intervention and value placed on family care by clinical co-researchers. Once incorporated in their practice intervention delivery took no longer than usual practice and could be divided across consultations and collectively delivered with ward and discharge teams. Conclusions: The Family-Focused Support Conversation is usable, accessible and acceptable. It enhances family support by facilitating discussion of family concerns about end of life caregiving and results in family members making informed decisions about their role in end of life care following discharge. 

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

Determinants of primary and non‐primary informal care‐giving to home‐based palliative care cancer care‐recipients in Ontario, Canada

Background: Informal care plays an important role in the care of care‐recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non‐primary caregivers. Moreover, little is known about the provision of informal care in the context of home‐based palliative care. Objectives: The purpose of this study was to examine the provision of primary and non‐primary informal care‐giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non‐primary caregivers are those other than the primary caregiver who provide care‐giving. Methods: A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home‐based palliative care cancer care‐recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care‐giving. Regression analysis with instrumental variables was used. Results: About 90% of primary caregivers were spouses and children, while 53% of non‐primary caregivers were others rather than spouses and children. The average number of hours of primary and non‐primary informal care‐giving reported for each 2‐week interview period was 83 hr and 23 hr, respectively. Hours of home‐based personal support workers decreased the intensity of primary care‐giving and the likelihood of non‐primary care‐giving. Home‐based nursing visits increased the propensity of non‐primary care‐giving. The primary care‐giving and non‐primary care‐giving complement each other. Care recipients living alone received less primary informal care‐giving. Employed primary caregivers decreased their provision of primary care‐giving, but promoted the involvement of non‐primary care‐giving. Conclusions: Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non‐primary care‐giving, to balance the work of the primary caregivers and their care‐giving responsibility, and to effectively arrange the formal home‐based palliative care services.

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

Depressive-Symptom Trajectories From End-of-Life Caregiving Through the First 2 Bereavement Years for Family Caregivers of Advanced Cancer Patients

Background: Family caregivers' distinct depressive-symptom trajectories are understudied and have been examined independently during end-of-life (EOL) caregiving or bereavement, making it difficult to validate two competing hypotheses (wear-and-tear vs. relief) of caregiving effects on bereavement. Existing studies may also miss short-term heterogeneity in depressive symptoms during the immediate postloss period due to lengthy delays in the first postloss assessment. Objectives: This secondary-analysis study examined distinct depressive-symptom trajectories for caregivers of advanced cancer patients from EOL caregiving through the first 2 bereavement years with closely spaced assessments. Methods: Depressive symptoms were measured monthly during EOL caregiving and 1, 3, 6, 13, 18, and 24 months postloss among 661 caregivers using the Center for Epidemiologic Studies-Depression scale. Depressive-symptom trajectories were identified using latent-class growth analysis while controlling for gender and age. Results: We identified seven distinct depressive-symptom trajectories (prevalence) characterized by the timing, intensity, and duration of depressive symptoms: minimal-impact resilience (20.4%), recovery (34.0%), preloss-grief only (21.6%), delayed symptomatic (9.1%), relief (5.9%), prolonged symptomatic (6.5%), and chronically persistent distressed (2.5%). Conclusion: Caregivers of advanced cancer patients responded heterogeneously to the stresses of EOL caregiving and bereavement. The majority of caregivers was resilient while providing caregiving and quickly rebounded to healthy levels of psychological functioning during bereavement, whereas a minority experienced delayed-symptomatic, prolonged-symptomatic, or chronically-persistent-distressing depressive-symptom trajectories. Linking caregivers' psychological experiences from caregiving through bereavement by closely spaced assessments can more comprehensively illustrate their depressive-symptom trajectories, which confirm both the wear-and-tear and relief hypotheses, and help in targeting interventions for distinct depressive-symptom trajectories.

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

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study

Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. Objective: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. Methods: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. Results: We anticipate that preliminary results will be available by Spring 2022. Conclusions: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. International Registered Report Identifier (IRRID): PRR1-10.2196/34652

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

Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

Background: Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements. Methods: Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis). Results: Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework. Conclusion: The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL. 

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

Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Methods: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.

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

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. Objectives: We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions. 

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

Caring for each other: a rapid review of how mutual dependency is challenged by advanced illness

Background: This review explores factors sustaining and threatening couples' relationships when both have advanced illness. Methods: Qualitative studies exploring relationships between two people in a marriage/partnership with advanced illness are included. Findings: A total of 12 articles are included. Internal enabling factors, external enabling factors and threatening factors are identified. However, there is limited evidence internationally on factors sustaining these relationships and crisis factors. Little is known about the impact of crises on couples and the process of change from mutual dependency to carer and cared for. Conclusions: The article concludes that shifts by services towards holistic care focused on the couple's needs are indicated.

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

Caregiving adult children’s perceptions of challenges relating to the end of life of their centenarian parents

Background: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents’ end of life (EOL), dying and death as well as their own advancing age. Objectives: This study aims to analyse the challenges of caregiving adult children regarding their parents’ end of life and the related burdens and barriers they report. Methods: Semi‐structured interviews were conducted with 13 caregivers following a theory‐based and tested guideline. The computer‐aided coding and evaluation followed the structured content analysis approach. Results: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra‐ and interpersonal conflicts relating to EOL became apparent. Discussion: The results indicate several potential burdens for centenarians’ caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents’ very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent’s death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well‐being of family caregivers and care recipients. Limitations: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented. Conclusion: The findings suggest that interventions designed for family‐related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.

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

Care Associated With Satisfaction of Bereaved Family Members of Terminally Ill Cancer Patients With Dyspnea: A Cross-sectional Nationwide Survey

Background: Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. Objectives: This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families' satisfaction with care for terminal dyspnea, and explore determinants contributing to families' satisfaction. Methods: A nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families. Results: In total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%–89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%–69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85–19.36 and 15.37, 5.00–47.25, respectively). Conclusion: Dedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.

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

Informal caregivers of older Muslims diagnosed with cancer: A portrait of depression, social support, and faith

Objective: Islamic population constitute more than 20% of the world population and is growing rapidly. Nevertheless, data concerning informal caregiving to older Muslim patients diagnosed with cancer are scarce. Improving the well-being of caregivers is a vital step to optimal care for the patients themselves throughout the Muslim community and the world. This study focuses on a sample of Palestinian caregivers of older Muslim patients diagnosed with cancer living in East Jerusalem, the West Bank, and Gaza. The study aims to describe the socio-demographic characteristics of the caregivers and to understand their social support, and identify predictors of caregivers’ depression. Methods: A cross-sectional study of a convenience sample of 99 dyads of Palestinian patients (age ≥65) and their informal caregivers. Depression and social support were measured using the five items of the Geriatric Depression Scale and the Cancer Perceived Agents of Social Support questionnaire. Results: Caregivers were most frequently adult children (52%) or spouses (32%), with male patients cared for by spouses (47.5%) or sons (32%), and female patients by daughters (50%). Clinical levels of depression were reported by 76% of the caregivers and 85% of patients. The significant predictors of caregiver depression were female gender, lower education, lower perceived social support from spouse and family, and higher perceived support from faith. Significance of results: Healthcare providers serving the study population should determine the position and role of the caregiver within the social and family structure surrounding the patients’ families. This understanding may facilitate overcoming barriers to effective and meaningful social support.

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

Reliability, validity and acceptability of the traditional Chinese version of the carer support needs assessment tool in Hong Kong palliative care settings

Background: Among the few existing needs assessment tools for family carers, the 14-item Carer Support Needs Assessment Tool (CSNAT) is the only brief and holistic needs screening tool designed for everyday use in palliative care practices. The aim of this study was to evaluate the reliability, validity, and acceptability of the traditional Chinese version of the CSNAT in palliative care settings in Hong Kong. Methods: This adopted a cross-sectional and correlation design with repeated measures. The participants were 125 family carers of palliative cancer patients and 10 healthcare providers (HCPs) that were recruited from two local hospitals. The evaluation of psychometric properties included the following: (1) content validity through HCPs including frontline physicians, nurses, social workers, and clinical psychologists; (2) construct validity between the CSNAT items and those of the validated tools that measured caregiver burden, social support, and caregiving self-efficacy; and (3) one-week test-retest reliability in a sub-sample of 81 caregivers. The acceptability of the tool was assessed by the carers using several closed-ended questions. Results: The content validity index of the CSNAT at the scale level was 0.98. Each item of the CSNAT was significantly and moderately correlated with caregiver burden (Spearman’s r = 0.24 to 0.50) and caregiving self-efficacy (r = − 0.21 to − 0.52), but not for social support. All CSNAT items had fair to moderate test-retest reliability (weighted kappa = 0.21 to 0.48), with the exception of two items “managing your relatives’ symptoms, including giving medicines” and “having time for yourself in the day”. Regarding the acceptability of the CSNAT, almost all HCPs were willing to use the CSNAT for carer assessment and support. 89.6% of the carers demonstrated a comprehensibility of the CSNAT tool and 92.9% felt comfortable answering the questions. Around 90% of the carers agreed to use the tool for screening, discussing needs, and making referrals. Conclusion: The traditional Chinese version of the CSNAT is a tool with high validity and acceptability and adequate reliability that measures family carers’ support needs, which should be considered for wide application in local palliative care practices. 

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

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Objectives: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Methods: Combined analysis of eight studies with bereaved family caregivers’ evaluations 2005–2019. Setting/participants: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052–0.244; adjusted 0.170 points 95% CI, 0.055–0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of −0.175 points (95% CI, −0.291 to −0.058) per year increment. With adjustment, the trend was not significant (−0.070 EOLD-CAD total score points, 95% CI, −0.205 to 0.065) and only the EOLD-CAD subscale ‘Well being’ decreased. Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia. 

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

Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries

Background: Although family caregivers (FCs) play an important role in the care provided to incurable cancer patients in our region, little is known about the burden they experience. Objectives: This study was conducted to determine the prevalence of caregiver burden (CB) among FCs of incurable cancer patients in two Eastern Mediterranean countries and to identify factors that may be associated with significant CB. Methods: The study included 218 FCs, 165 from Egypt and 53 from Saudi Arabia. The 22-item Zarit Burden Interview (ZBI-22) was used to assess caregiver burden CB. Significant CB was defined as a ZBI-22 score ≥ 21. The assistance with basic ADLs was classified into 3 levels according to FCs’ assistance with early/middle/late-loss basic ADLs. The relationship between CB and the assistance with ADLs and other factors was studied. Results: The mean (SD) ZBI-22 score among FCs was 23.4 (9.3) and the majority (128/218, 59%) had significant CB. Eighty-nine percent of FCs assisted with at least one basic ADL. Assistance with late-loss basic ADLs, best supportive care treatment plan and poorer performance status were associated with higher CB (p < 0.0001, =0.018 and = 0.005). However, in logistic regression analysis, only assistance with late-loss ADLs was independently associated with significant CB (OR = 3.4 [95%CI:1.2–9.7], p = 0.024). Conclusion: A substantial proportion of FCs of incurable cancer patients in our region experience significant CB. Family caregivers assisting with late-loss basic ADLs are at risk of significant CB and should be routinely screened for CB. 

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

Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: A meta-synthesis of qualitative and quantitative studies

Objective: To investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China. Methods: A search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: Narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach. Results: The literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients' needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers' needs included needs to care for and improve the quality of life of patients, and to care for themselves well. Conclusions: This study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients' demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care. 

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

Factors associated with carer psychological and physical health during end-of-life caregiving: An observational analysis of a population-based post-bereavement survey of carers of people with cancer

Objective: Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers' health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample. Design National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer. Methods: Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%). Outcome measures Carers' mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS). Methods Survey questions to measure potential variables associated with carer health were based on past research and covered patients' symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables' relationship with outcomes. Results: Patients' psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients' psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health. Conclusions: Improvements in carers' health overall may be made by focusing on potential impacts of patients' psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers. 

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

A Comparison of Caregiver Burden of Patients with Advanced Cancer in Different Palliative Cancer Care Settings

Background: Informal caregivers may experience a significant burden while caring for cancer patients. Little is known about how caregiver burden varies across different palliative cancer care settings and the factors influencing it. Objectives: We compared the severity of caregiver subjective stress burden (emotional impact) among caregivers of patients seen in the outpatient supportive care center (SCC) with those being cared for in the acute palliative care unit (PCU). Secondary aims were to compare other caregiver burden dimensions, quality of life, and any association of caregiver subjective stress burden to various patient and caregiver factors. Methods: Eligible patients and their informal caregivers in the SCC or PCU at a comprehensive cancer center in the USA were approached and enrolled. The Montgomery-Borgatta Caregiver Burden Scale and the Short-form 36 were used to measure burden and quality of life. Multivariate general linear regression was employed to evaluate the effect of covariates on subjective stress burden. Results: Ninety-eight dyads in the SCC and 74 dyads in the PCU were enrolled. PCU caregivers reported worse subjective stress burden (p = 0.0029) and mental health (p = 0.0299). Multivariate analysis showed correlations between subjective stress burden and caregivers' objective burden (p = 0.0136), subjective demand burden (p ≤ 0.0001), mental health (p = 0.0074), duration of caregiving (p = 0.0680), education (p = 0.0192) and with patients' anxiety (p = 0.0003) and current/recent cancer treatment (p = 0.0579). Conclusion: PCU caregivers demonstrated worse emotional burden and mental health than those in the SCC. More research is needed to tailor interventions for various caregiver burden dimensions. NCI Clinical Trial Registration Number ID: NCI-2019-01197 

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

A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. Objective: This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration: Clinicaltrials.gov. NCT04062552; Pre-results. 

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

A scoping review of unmet needs of caregivers of patients with pulmonary fibrosis

Background: Pulmonary fibrosis is an incurable lung disease that leads to significant morbidity. In many patients, pulmonary fibrosis is progressive causing debilitating dyspnea that impairs patients' ability to perform everyday tasks and maintain independence. Informal caregivers provide invaluable support for patients with pulmonary fibrosis; however, support for the caregiver is inadequate. Objective: The purpose of this scoping review is to identify unmet needs for caregivers of pulmonary fibrosis patients. Findings: During the past 18 months, there has been an increase in studies about the impact of pulmonary fibrosis on the caregiver or carer of the patient with pulmonary fibrosis. These carers experience caregiver burden which includes negative psychological and physical effects on caregiver health because of the challenge in caring for someone with pulmonary fibrosis. Caregivers describe the need for help navigating the healthcare system. This includes supportive and informational needs, lack of access to comprehensive patient-centred care, geographically accessible specialty centres and psychological support for both patient and caregiver. 

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

Until death do us part Adult children’s perspective of their parents’ transition from living at home to moving into a nursing home and the time after death

Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children’s caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. Methods: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. Results: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. Conclusion: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. Trial registration: Current Controlled Trials NCT02708498.

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

Educational intervention to improve palliative care knowledge among informal caregivers of cognitively impaired older adults

Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults. Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test. Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05). Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

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

“What do we fear the most?”: Exploring fears and concerns of patients, family members and dyads in end‐stage renal disease

Background: End‐stage renal disease (ESRD) and the need for haemodialysis (HD) treatment are increasing. The course of the disease and all the life readjustments needed may generate a multitude of fears in patients and families.AimThis study aimed to explore the main fears and concerns of patients with ESRD undergoing HD and their family members. Methods: A qualitative study was performed.MethodsIndividual semi‐structured interviews were conducted with three groups: 20 patients, 14 family caregivers and 15 patient–family dyads. Interviews were audiotaped, transcribed verbatim and submitted to thematic analysis. Findings: Five major themes emerged: (i) fear of death (fear of earlier death, fear of a sudden death and fear of dying); (ii) fear of problems during HD (fears related to the vascular access, and fear of complications during HD); (iii) concerns related to the disease (fear of loss of autonomy, fears of getting worse, fears related to renal transplantation and concerns about dietary restrictions); (iv) fear about the future; and (v) absence of fears and concerns. Conclusion: Patients with ESRD undergoing HD and their family members expressed different fears related to the disease and the treatments required. Renal care staff must acknowledge and understand such concerns and help patients and families to cope. This is important to improving people's quality of life (QoL), the dialogue between health professionals, patients, and family members, and the care offered by the dialysis care settings. Moreover, this study highlights the impact this disease has at a familial level. Future family‐based interventions should acknowledge possible fears and concerns of this population and integrate them into their programs.

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

“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

Background: Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families. The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision makers (e.g., program managers) and to understand how their experiences within the health care system may have influenced their perceptions. Methods: Nine caregivers and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Audio recordings were transcribed verbatim and qualitatively analyzed for themes. Results: Three themes emerged, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, the present study also uncovered systemic concerns. There was agreement between the two participant groups across most subthemes, however only caregivers reported feelings of being trapped by the health care system and a general lack of respect from health care professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual’s illness. Conclusions: Caregivers are critical. The health care system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands. 

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

“What do we fear the most?”: Exploring fears and concerns of patients, family members and dyads in end‐stage renal disease

Introduction: End‐stage renal disease (ESRD) and the need for haemodialysis (HD) treatment are increasing. The course of the disease and all the life readjustments needed may generate a multitude of fears in patients and families. Objectives: This study aimed to explore the main fears and concerns of patients with ESRD undergoing HD and their family members. Methods: A qualitative study was performed.MethodsIndividual semi‐structured interviews were conducted with three groups: 20 patients, 14 family caregivers and 15 patient–family dyads. Interviews were audiotaped, transcribed verbatim and submitted to thematic analysis. Findings: Five major themes emerged: (i) fear of death (fear of earlier death, fear of a sudden death and fear of dying); (ii) fear of problems during HD (fears related to the vascular access, and fear of complications during HD); (iii) concerns related to the disease (fear of loss of autonomy, fears of getting worse, fears related to renal transplantation and concerns about dietary restrictions); (iv) fear about the future; and (v) absence of fears and concerns. Conclusions: Patients with ESRD undergoing HD and their family members expressed different fears related to the disease and the treatments required. Renal care staff must acknowledge and understand such concerns and help patients and families to cope. This is important to improving people's quality of life (QoL), the dialogue between health professionals, patients, and family members, and the care offered by the dialysis care settings. Moreover, this study highlights the impact this disease has at a familial level. Future family‐based interventions should acknowledge possible fears and concerns of this population and integrate them into their programs.

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

"it can be hard but it's not bad": Three questions to solicit caregiver perceptions of benefits and burdens to participating in pediatric palliative care research

Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%). Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted. Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: "Hoping to help others,""Speaking about what is hard is important,"and "Being in the study was sometimes hard but not bad. Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge. 

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

The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’

Background: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these. Aim: To explore patient and family caregivers’ views of managing medications when someone is seriously ill and dying at home. Design: A qualitative design underpinned by a social constructionist perspective involving interviews with bereaved family caregivers, patients and current family caregivers. A thematic analysis was undertaken. Setting/participants: Two English counties. Data reported in this paper were generated across two data sets using: (1) Interviews with bereaved family caregivers (n = 21) of patients who had been cared for at home during the last 6 months of life. (2) Interviews (n = 43) included within longitudinal family focused case studies (n = 20) with patients and current family caregivers followed-up over 4 months. Results: The ‘work of managing medications’ was identified as a central theme across the two data sets, with further subthemes of practical, physical, emotional and knowledge-based work. These are discussed by drawing together ideas of illness work, and how the management of medications can substantially add to the burden placed on patients and families. Conclusions: It is essential to consider the limits of what it is reasonable to ask patients and families to do, especially when fatigued, distressed and under pressure. Focus should be on improving support via greater professional understanding of the work needed to manage medications at home.

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

"Why Couldn't I Go in To See Him?" Bereaved Families' Perceptions of End‐of‐Life Communication During COVID‐19

Background/Objective: The COVID‐19 pandemic has resulted in rapid changes to end‐of‐life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end‐of‐life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID‐19 pandemic. Design: Qualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March–June 2020. Data were analyzed using qualitative content analysis. Setting: VA medical centers with the highest numbers of COVID‐19 cases during the study period. Participants: Next‐of‐kin of 328 Veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units. Measurements: Open‐ended survey questions (response rate = 37%) about family member's perceptions of: (1) communication with the healthcare team about the patient, (2) communication with the patient, and (3) use of remote communication technologies. Results: Bereaved family members identified contextual factors perceived to impact communication quality including: allowing family at the bedside when death is imminent, fears that the patient died alone, and overall perceptions of VA care. Characteristics of perceived high‐quality communication included staff availability for remote communication and being kept informed of the patient's condition and plan of care. Low‐quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient's condition, and when the family member was not consulted about care decision‐making. Communication quality with the patient was facilitated or impeded by the availability and use of video‐enabled remote technologies. Conclusion: Communication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in‐person visitation. Families report that low‐quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high‐quality communication occurs despite pandemic‐related visitation restrictions.

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

What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

Context: Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. Objectives: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. Methods: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. Results: Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiver support at the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed. Conclusion: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.

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

Views of patients with advanced disease and their relatives on participation in palliative care research

Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question. Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. Results: First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p = 0.001) and the type of diagnosis (p = 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. Conclusions: Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.

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

Video decision support tool promoting values conversations in advanced care planning in cancer: protocol of a randomised controlled trial

Background: Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s. Methods: This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. Conclusion: We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study’s findings will assist with further refinement of the VDST and planning for a future multisite study. Trial registration Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910. Registered 12 October 2020. Retrospectively registered.

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

Validating the Chinese version of the Cancer Survivors' Partners Unmet Needs measure (C‐CaSPUN) and exploring unmet needs in Chinese cancer survivor–family caregiver dyads

Objectives: To evaluate the psychometric properties of the C‐CaSPUN in Chinese family caregivers (FCs) of cancer survivors (CaS) and to compare the unmet needs of CaS‐FC dyads. Methods: A questionnaire survey, consisting of five Chinese version measurement scales, was used to collect data from CaS‐FC dyads. Statistical methods used included exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Cronbach's α, intraclass correlation coefficient (ICC) and Pearson's correlation. Results: Participants consisted of 610 survivor–caregiver dyads. EFA and CFA established the four‐factor construct C‐CaSPUN, comprising relationship impact and life perspective, information and health care, quality of life (QoL) and survivorship care. All of the C‐CaSPUN scales had good internal reliability (Cronbach's α ≥ 0.752). The ICC for test–retest ranged from 0.645 to 0.782 at the scale level, with an average ICC value of 0.653. The concurrent validity was evidenced by C‐CaSPUN being negatively associated with SF‐12 MCS and positively related to anxiety and/or depression. In addition, the correlation coefficient scores between C‐CaSPUN factors and the C‐CaSUN total scale ranged from moderate to good (r = 0.505–0.671). Conclusions: Study findings may support the reliability and validity of the C‐CaSPUN in measuring the unmet needs of FCs of Chinese CaS.

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

Willingness of family caregivers of people with dementia to undertake Advance Care Planning: Examining an extended model of the Theory of Planned Behavior

Background and objectives: Family caregivers of people with dementia experience high burden making medical decisions for their loved ones. Undertaking Advance Care Planning (ACP) can help reduce burden and stress. Having experiences making medical decisions for someone else may influence the way people make decisions for themselves. Therefore the aim of this study was to assess the willingness of family caregivers of people with dementia to undertake ACP for themselves, using the Theory of Planned Behavior. Research design and methods: Face-to-face interviews were conducted with 195 family caregivers of people with dementia. A structured questionnaire was used to assessed participants' attitudes, subjective norms, perceived control, anticipated regret, the wish to prolong life and caregiver burden. Hierarchical regression analysis was performed to test the contribution of the variables to the willingness to undertake ACP. Results: Overall, participants expressed moderate willingness to undertake ACP. Among the various options for undertaking ACP, the highest willingness expressed was to appoint a durable power of attorney and the lowest willingness was to have informal conversations with their doctor. The hierarchical regression revealed that attitudes, subjective norms and anticipated regrets were main determinants of the willingness to undertake ACP. Discussion and implications: Interventions should be developed to encourage family members to undertake ACP for themselves, which emphasize the advantages of the process and involve significant others in the formal and informal aspects of ACP.

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

Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review

Background: People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness. Aim: To describe the palliative care needs and experiences of people with mesothelioma and their family carers. Design: Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115). Data sources: MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers. Results: The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of ‘uncertainty’ was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients. Conclusion: The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians’ play in providing generalist palliative care for people with mesothelioma and their carers.

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

Understanding of Health-related Decision-making Terminology Among Cancer Caregivers

Background: Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. Objective: The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Methods: Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Findings: Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Conclusions: Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.

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

What Matters to Patients and Their Families During and After Critical Illness: A Qualitative Study

Background: Despite increased emphasis on providing higher-quality patient- and family-centered care in the intensive care unit (ICU), there are no widely accepted definitions of such care in the ICU. Objectives: To determine (1) aspects of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after hospital discharge, and (3) outcomes perceived as equivalent to or worse than death. Methods: Semistructured interviews (n = 49) of former patients of an urban, academic medical ICU and their family members. Two investigators reviewed all transcripts line by line to identify key concepts. Codes were created and defined in a codebook with decision rules for their application and were analyzed using qualitative content analysis. Results: Salient themes were identified and grouped into 2 major categories: (1) processes of care within the ICU— communication, patient comfort, and a sense that the medical team was "doing everything" (ie, providing exhaustive medical care) and (2) patient and surrogate outcomes after the ICU—survival, quality of life, physical function, and cognitive function. Several outcomes were deemed worse than death: severe cognitive/physical disability, dependence on medical machinery/equipment, and severe/constant pain. Conclusion: Although survival was important, most participants qualified this preference. Simple measures of mortality rates may not represent patient- or family-centered outcomes in evaluations of ICU-based interventions, and new measures that incorporate functional outcomes and patients' and family members' views of life quality are necessary to promote patient-centered, evidence-based care.

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

Why Is It Just So Hard? Making Sense of End-of-Life Communication Between Adult Children and Their Terminally Ill Parental Figures

Background: The aging population in the United States is predicted to become one fifth of the population by 2050. With that increase, more individuals in the country will be experiencing chronic health conditions and the need for care, with end of life (EoL) becoming more of a topic that needs to be discussed. Objectives & Methods: This study aims to explore the ways adult children talk to their parents about EoL, death, and dying. Findings: We discovered six themes: protection, meeting needs, guilt and regret, control, family dynamics, and communication type. Each of these was prevalent in responses to how adult children cope, how they cared for their parent, and how hope played into the interactions. Conclusions: We believe these themes will be helpful in developing a quantitative scale to study EoL further and be practical in helping adult children cope following death of their parent.

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

Trends of concerns from diagnosis in patients with advanced lung cancer and their family caregivers: A 2-year longitudinal study

Background: Both advanced cancer patients and their family caregivers experience distress and have a range of concerns after cancer diagnosis. However, longitudinal studies on this topic have been lacking. Aim: To investigate concerns in both patients with advanced lung cancer and their family caregivers longitudinally from diagnosis. Design: A multi-center prospective questionnaire-based study. Setting/participants: We recruited patients with newly diagnosed advanced lung cancer and their family caregivers at 16 hospitals in Japan. We prospectively assessed the prevalence of their concerns using the Concerns Checklist and investigated the associations between their concerns and mental status as well as quality of life until 24 months after diagnosis. Results: A total of 248 patients and their 232 family caregivers were enrolled. The prevalence of serious concerns was highest at diagnosis (patients: 68.3%, family caregivers: 65.3%). The most common serious concern was concern about the future in both groups at diagnosis (38.2% and 40.5%, respectively) and this remained high in prevalence over time, while the high prevalence of concern about lack of information improved 3 months after diagnosis in both groups. Approximately one-third of patient-family caregiver dyads had discrepant reports of serious concerns. The presence of serious concerns was significantly associated with anxiety and depression continuously in both groups. Conclusions: The majority of advanced lung cancer patients and their family caregivers have serious concerns from diagnosis, which is associated with their psychological distress. The spectrum of concerns alters over the disease trajectory, warranting efficient tailored care and support for both groups immediately after diagnosis.

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

Treatment Decision Making and Regret in Parents of Children With Incurable Cancer

Background: The treatment-related decision-making process is a highly emotional time for parents of children with incurable cancer, and they tend to continue the cancer-directed treatment even when they realize that there is no cure for their child. Objective: To evaluate whether parents involved in different treatment decisions regretted their treatment decision after their child's death. Methods: We collected prospective data from 418 parents of children who died of incurable cancer after receiving cancer care at 1 of 4 hospitals. We assessed parent decisional regret and its association with the type of treatment decision made (non–cancer-directed vs cancer-directed). Propensity score–matched analysis (at a ratio of 1:1) was performed. Results: One hundred forty-eight parents (35.4%) reported heightened regret. Two isonumerical arms with 103 (non–cancer-directed) and 103 (cancer-directed) resulted after propensity score matching. Parents with a cancer-directed treatment decision (relative risk, 1.53; 95% confidence interval, 1.24–1.90; P =.002) were more likely to report decisional regret compared with those with a non–cancer-directed decision. Conclusion: Bereaved parents with a cancer-directed treatment decision are more likely to experience increased regret for their decision than bereaved parents involved in a non–cancer-directed treatment decision. Implications: Shared-decision aids should be prepared for young parents with low education to improve disease-related knowledge, accurate risk perceptions, and options congruent with parents' values.

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

'Traversing difficult terrain'. Advance care planning in residential aged care through multidisciplinary case conferences: A qualitative interview study exploring the experiences of families, staff and health professionals

Background: Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning. Aim: To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals. Design: A qualitative study (February–July 2019) using semi-structured interviews. Setting: Two residential aged care facilities in one Australian rural town. Participants: Fifteen informants [family (n = 4), staff (n = 5), health professionals (n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences. Results: Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The 'conversation' was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident. Conclusion: While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.

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

Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease

Background: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. Methods: Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers (n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. Results: Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. Conclusion: The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers’ support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment. 

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

Translation, cultural adaptation and validation of the Chinese version of the Carer Support Needs Assessment Tool for family caregivers of cancer patients receiving home-based hospice care

Background: Family caregivers need to be supported in caring for patients at the end of life, but practical tools to assess their support needs have been missing in China. So this study aimed to culturally adapt and validate the Carer Support Needs Assessment Tool (CSNAT). Methods: Cross-cultural adaptation of the original CSNAT for a Chinese setting was performed according to Brislin’s translation guidelines. A pilot study was conducted with 15 Chinese family caregivers of cancer patients receiving hospice home care and 5 medical staff. A cross-sectional survey of 205 family caregivers was conducted from December 2018 to May 2019 at a home-based hospice care institute in Shenzhen, China. The validation procedure comprised the establishment of (1) content validity by a group of six experts; (2) face validity by 15 family caregivers; (3) criterion validity by calculating Spearman’s correlations between the CSNAT and caregiving burden, caregiving preparedness and quality of life scales; (4) internal consistency using Cronbach’s alpha. Results: The CSNAT demonstrated good face validity and good content validity. CSNAT scores showed clear positive correlations with caregiving burden and negative correlations with preparedness for caregiving and quality of life. Internal consistency was high (Cronbach’s alpha = 0.899), although such reliability testing is not recommended for this tool. Conclusions: The Chinese version of the CSNAT is a valid tool that is appropriate for identifying needs of family caregivers of cancer patients in home-based hospice care.

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

Transitions during end-of-life care from the perspective of informal caregivers – A concept analysis using Rodgers' (2000) evolutionary approach

Background: To produce a conceptual and operational definition of transition, in the context of end-of-life care, as experienced by informal caregivers. Methods: The authors used Rodgers' (2000) concept analysis framework to examine this concept. Findings: Common themes emerged using Rodgers' (2000) inductive approach confirming transition for informal caregivers at the end of life as a process comprising the presence of trigger(s)/event(s), awareness, instability and engagement/learning while maintaining normality. There was also duration to this process that was often unknown and unpredictable. This concept analysis provides useful insight into understanding the complex dynamics of transition during this period. The primary antecedent of this concept, prompting transition, is a diagnosis of non-curative disease for the patient. In some cases, a gradual realisation rather than a formal diagnosis that the illness has progressed to a non-curative stage, can also be an antecedent. Transition during end-of-life-care for informal caregivers can be a highly emotional time for this vulnerable cohort. Effective transitioning can ensure a stability and quality end-of-life outcomes, such as a peaceful death, as the awareness and learning that it brings, prompts planning actions for terminal care. Conclusions: Through recognising the findings of this concept analysis, deeper insight may be gained to support the provision of care, by nurses, to informal caregivers, prompting them towards effective transitions that foster the best interest of the patient.

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

Telehealth in Palliative Care: Communication strategies from the COVID-19 pandemic

Background: Palliative care was once believed to be too high-touch to be delivered via telehealth. However, numerous studies have demonstrated the positive effects of palliative care delivered through telehealth. Because the COVID-19 pandemic has quickly shifted how health care is delivered to patients with cancer, particularly because of their immunocompromised status and the risks associated with unnecessary exposures in the clinic, previous lessons from palliative care research studies can be used to inform practice. Methods: This article presents a case study that illustrates evidence and best practices for continuing to deliver palliative care via telehealth after COVID-19 restrictions are lifted.

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

A Systematic Review of Clinical Interventions Facilitating End-of-Life Communication Between Patients and Family Caregivers

Background: Communication between patients and family caregivers plays a key role in successful end-of-life (EOL) care. In the majority of cases, health-care providers (HCP) are responsible for leading this communication in clinical settings. Objectives: This systematic review aimed to examine the evidence for the efficacy of HCP-led interventions in enhancing communication between patients and family caregivers. Methods: The review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and involved a search of MEDLINE via PubMed, CINAHL, Scopus, Embase, and PsycINFO as well as a manual search for additional articles on Google Scholar without date restrictions. Of 2955 articles retrieved, 8 meeting the eligibility criteria were included in the review. A quality appraisal of the selected studies was performed using the van Tulder Scale, with 5 of 8 studies rated as high quality. Results: All 8 studies employed psychoeducational interventions involving both patients and surrogate/family caregivers. Common elements of the interventions reviewed included encouraging participant dyads to share their concerns about the patient's medical condition, clarify their goals and values for EOL care, and discuss their EOL care preferences. Of 8 interventions reviewed, 6 measured EOL care preference congruence within dyads as a primary outcome, and all 6 interventions were effective in increasing congruence. Secondary outcomes measured included decisional conflict and relationship quality, with mixed outcomes reported. Conclusions: This review suggests that HCP-led EOL communication interventions show promise for improving EOL care preference congruence. However, further studies with improved methodological rigor are needed to establish the optimal timing, intensity, and duration of interventions.

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

Supportive nursing care for family caregivers – A retrospective nursing file study

Background: Family caregivers enable patients to be cared for and die at home whereas nurses aim to support the family caregivers of these patients. Information on how this support is provided and how this is documented in nursing files is largely lacking. Objectives: To gain insight in nurses' reports on the supportive care for family caregivers. Methods: We studied 59 nursing files of adult patients who had received hospice home care in the Netherlands from 4 home care organisations between August 2017 and October 2018. Information on supportive nursing care for family caregivers was retrieved from the nursing files based on a prestructured form. Data was quantitatively and qualitatively analysed. Findings: 54 out of 59 nursing files contained information about family caregivers; 40 files contained nursing diagnoses on family caregivers and in 26 files nursing interventions on supportive care for family caregivers were reported. Only half of the nursing files contained information about supportive nursing care for family caregivers. Conclusions: Complete nursing documentation of provided care to family caregivers is needed. • Nurses should pay attention to the family caregivers' needs and experiences in palliative care. • Nursing documentation on supporting family caregivers is found to be incomplete. • Reported interventions to support family caregivers in palliative care were scarce. • Nurses may take into account two roles in the care for family caregivers: co-client and co-worker. • Assessment tools and proper documentation may help nurses to support family caregivers.

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

Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: a prospective longitudinal study

Purpose: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement. Methods: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6–9 months after SIPC (N = 160). Results: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use. Conclusions: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future. 

 

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

Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial

Introduction: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. Aim: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. Methods: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. Results: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. Conclusion: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers' needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers. 

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

Support Intervention for Families and Caregivers of Palliative Care Patients (QI701)

Objectives: 1. Develop a streamlined, routine psychosocial spiritual assessment among families and caregivers of palliative care patients. 2. Develop streamlined, routine psychosocial spiritual needs intervention among families and caregivers of palliative care patients. Background: Complicated grief is intense, debilitating grief for more than six months after loss and is predicted by pre-loss depressive symptoms and unmet psychosocial needs. Per the Clinical Practice Guidelines for Quality Palliative Care, families are at risk and their psychosocial-spiritual needs should be met to improve outcomes. Aim Statement: This initiative aims to develop a streamlined, routine psychosocial spiritual assessment and intervention of families and caregivers' needs to enhance support. Methods: A validated, confidential, 13-question tool (The American Academy of Hospice and Palliative Medicine's Chart Abstraction Checklist-Psychosocial Spiritual Assessment, edited with permission) was used to assess families of inpatient palliative care patients (n=46) over a three-month period. Identified needs were appropriately referred to a social worker, chaplain, or care manager. These assessments measured the number of needs identified and relationships among needs (p<0.05 is statistically significant). Results: Of those assessed, 97.8 percent had a need that required follow-up. A moderately significant relationship was established between those who felt they were coping well and those who reported the perception of a good support system (X2 =6.893, p=.009, Cramer's V of .387). Conclusions and Implications: Performing routine assessments resulted in a significant identification of unmet needs. Those who have greater perceived support reported coping well. Routine psychosocial spiritual assessments and appropriate interventions on caregivers should be continued with a focus on those who have a lack of a support system.

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

Stress and Support in Family and Non-Family Relationships Within Hospice Cancer Survivor Social Networks (SCI954)

Background: Effective social support mitigates burden and distress experienced by cancer caregivers. Little research, however, investigates informal support within social networks of family caregivers of cancer home hospice patients, and how social stress may accompany this support. Research Objectives: We assessed patterns of support and stress within the social networks identified by family caregivers of cancer home hospice patients (N=90). Methods: We analyzed secondary data from a longitudinal multi-site study. Participants completed baseline measures including demographics (age, gender, race/ethnicity, marital status, employment, relationship to patient, length of caregiving) and self-report measures on caregiving (Rewards of Caregiving Scale, Caregiver Competence Scale, and Zarit Caregiving Burden Interview), overall mental and physical health, and perceived support and stress including the Duke Social Support and Stress Scale. Participants independently rated perceived levels of support and stress for up to six family members and four non-family members. Latent class analysis identified patterns in reported relationships, stress, and support, and. We then compared between-class differences in demographics and evaluated perceived health and caregiving burden. Results: Three types of social networks were identified: supportive (high support, low stress across family/non-family network), ambivalent maximizers (high support, high stress across family/non-family network), and family-focused ambivalent (high support, high stress across family network only). Groups differed by ethnicity, employment status, relationship to patient, and caregiving burden (p<0.05). Conclusion Social support is nuanced and may coexist with stress within the relationships and networks of hospice family caregivers. A better understanding of caregivers' social networks and the support and stress associated with those relationships can inform how hospice providers facilitate meeting caregivers' needs within these informal networks. Implications for Research, Policy, or Practice: Service providers should assess for the potential for hospice caregivers' support relationships to include both stress and support. Knowing this will help providers address unmet needs.

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

Strengths and Struggles for Families Involved in Hospice Care During the COVID-19 Pandemic

Background: The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. Methods: This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. Objectives: The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Results: Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. Conclusions: The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.

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

Smiles behind the masks: A systematic review and narrative synthesis exploring how family members of seriously ill or dying patients are supported during infectious disease outbreaks

Background: Infection control measures during infectious disease outbreaks can have significant impacts on seriously ill and dying patients, their family, the patient-family connection, coping, grief and bereavement. Aim: To explore how family members of patients who are seriously ill or who die during infectious disease outbreaks are supported and cared for during serious illness, before and after patient death and the factors that influence family presence around the time of death. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Medline, APA PsycInfo and Embase were searched from inception to June 2020. Forward and backward searching of included papers were also undertaken. Records were independently assessed against inclusion criteria. Included papers were assessed for quality, but none were excluded. Findings: Key findings from 14 papers include the importance of communication and information sharing, as well as new ways of using virtual communication. Restrictive visiting practices were understood, but the impact of these restrictions on family experience cannot be underestimated, causing distress and suffering. Consistent advice and information were critical, such as explaining personal protective equipment, which family found constraining and staff experienced as affecting interpersonal communication. Cultural expectations of family caregiving were challenged during infectious disease outbreaks. Conclusion: Learning from previous infectious disease outbreaks about how family are supported can be translated to the current COVID-19 pandemic and future infectious disease outbreaks. Consistent, culturally sensitive and tailored plans should be clearly communicated to family members, including when any restrictions may be amended or additional supports provided when someone is dying.

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

Silent suffering of the dying and their families: impact of COVID‐19

Death, grief and bereavement all look different in the current COVID‐19 pandemic. Patients and families are suffering as a result of COVID‐19 itself, and the measures required to contain it. As a result, health professionals need to be aware of potential for additional psychological distress, as well as the risk of prolonged grief disorder.

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

Rapid development of a decision-aid for people with dementia and their families during COVID-19

Introduction: COVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis. Objectives: To develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Results: Output from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making. Conclusions: Combining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.

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

A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

Background: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis. Results: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

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

A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.

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

Psychometric Testing of the Spanish Modified Version of the Mini-Suffering State Examination

Background: The mini-suffering state examination is a valid and reliable measure that have been used to assess suffering in patients with advanced cancer. The aim of this study was to carry out a psychometric analysis of the Spanish version of the mini-suffering state examination. Method: A validation study was conducted. Seventy-two informal caregivers of deceased patients in palliative care were included in this study. A psychometric testing of content validity, internal consistency, and convergent validity with the Spanish version of the quality of dying and death questionnaire was performed. Results: The original instrument was modified to be used by informal caregivers. The content validity was acceptable (0.96), and the internal consistency was moderate (α = 0.67). Convergent validity was demonstrated (r = −0.64). Conclusion: The Spanish modified version of the MSSE showed satisfactory measurement properties. The Spanish modified version of MSSE can be useful to facilitate screening, monitor progress, and guide treatment decisions in end-of-life cancer patients.

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

Preparedness for the death of an elderly family member: A possible protective factor for pre-loss grief in informal caregivers

Background: Pre-loss grief (PLG) has been identified as a robust risk factor for Prolonged Grief Disorder, which will be added to the DSM 5-TR. Therefore, identifying treatment targets to reduce PLG is warranted. "Preparedness" has been found to strongly predict PLG. The work is nascent and a consensus has not been reached about how best to assess for preparedness, and no reliable measure of this construct exists. Before examining the relationship between preparedness and PLG, an in depth understanding of how family members define preparedness is warranted. The purpose of this study was to develop a preliminary theoretical framework of preparedness for the loss. Methods: This was achieved through prospective semi-structured interviews with family members of Stage 4 Cancer (N = 16) and Advanced Dementia (N = 24) patients. Findings: The overarching theme related to preparedness for the loss was the need to reduce uncertainty, both before the person passes away (i.e., present certainty) and after the person passes away (i.e., future certainty). Factors associated with the need to establish certainty in the present included, religiosity and spirituality, good relationship quality with the person with the life limiting illness, having access to support, good communication with person with life limiting illness, and acceptance of the impending death. Certainty for the future included, knowing what to expect due to past experience of loss, having plans for life without the person, and social support. Conclusions: This study provides a preliminary framework of preparedness for family members of individuals with life limiting illness.

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

Positive Aspects of Family Caregiving for Older Adults at End-of-Life: A Qualitative Examination

Background: Family caregivers of older adults with dementia have significant challenges across many domains. While this role has been found to be burdensome on the caregiver, increasingly, though, there are also significant positive aspects reported by caregivers (known as the positive aspects of caregiving—PAC). Methods: This participatory qualitative study of 30 United States caregivers of family members age 65 and older who died with a dementia-related diagnoses used in-depth qualitative interviews and directed content analysis to understand the data. The study addressed a gap in the research literature and asked about caregiver's positive experiences during their family members' last weeks of life and investigated what this meant for the caregiver. Findings: Three primary themes were identified: (1) The Importance and Impact of Family Traditions/Celebrations, (2) Use of Humor in Living and the Difficult Experiences at End-of-Life, and (3) "The Gift of Caregiving." Conclusions: These findings are explored and reviewed in light of other research looking at the positive aspects of caregiving for caregivers taking care of persons living with dementia, finding concurrence and some uniqueness across the results. Implications of the findings for families and social work professionals are reviewed.

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

Perceived caregiving preparedness and quality of life among Indonesian family caregivers of patients with life-limiting illness

Background: Family caregivers play an important role in palliative care. However, family caregivers often report that they felt insufficiently prepared to become a caregiver. This lack of preparedness may lead to a decline in the caregiver s quality of life (QoL), and they may not be able to provide sufficient palliative care to their family member. Aims: To investigate the preparedness of family members to become caregivers alongside their QoL. Method: A correlational cross-sectional study design was used. A sample of 104 family caregivers completed a World Health Organization Quality of Life Brief to assess the QoL of participants. The Caregiving Inventory (CGI) was used to assess how prepared family members felt to become care-givers, and the CGI also included questions related to the patient s socio-demographic status and illness. Correlation analysis was used to address the research questions. Caregivers were caring for a family member with a life-limiting illness in a suburban district of Indonesia. Findings: The 104 family caregivers had a relatively low score for both QoL and caregiving preparedness. A caregiver feeling more prepared was associated with a higher QoL. The study also found a positive correlation (r value, between 0.236 0.481) between perceived caregiving preparedness, including its factors, and domains of QoL. Conclusion: A person s preparedness to become a caregiver is significantly associated with all QoL domains: physical, psychological, social and environmental. Family members can be better prepared to become a caregiver with training and information about personal care and symptom management. 

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

Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study

Background: When discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients’ quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were < 70 and ≥ 70 years of age and receiving palliative chemotherapy and to assess family caregivers’ treatment expectations. Methods: A prospective longitudinal study included patients with thoracic cancer receiving outpatient palliative chemotherapy at a university hospital in Denmark and their family caregivers. Patients’ treatment expectations and quality of life were assessed three times during treatment with a survey of treatment expectations and the Functional Assessment of Cancer Therapy – General questionnaire. Family caregivers’ treatment expectations were assessed once. Results: A total of 48 patients and 36 family caregivers participated between 2018 and 2019. No statistically significant age-related differences in treatment expectations and quality of life were identified. 28% of patients aged < 70 years and 7% of those aged ≥70 years expected a cure. Among family caregivers, 36% expected a cure. Across both age groups, mean total quality of life scores significantly decreased from 73.2 at first palliative chemotherapy cycle to 70.5 at third cycle (p = 0.02). No meaningful changes were found in quality of life within either age group. A subgroup analysis found no significant between-group differences in quality of life. Mean physical well-being score for all patients decreased from 20.3 at first cycle to 18.4 at third cycle (p = 0.03) and mean emotional well-being score decreased from 15.4 at first cycle to 14.6 at third cycle (p = 0.04). Conclusion: This study emphasizes the importance of initiating conversations about treatment expectations and paying attention to expectations that may differ by the age of the patient and between patients and family caregivers. Addressing treatment expectations among patients and family caregivers and monitoring quality of life among patients is important in clinical practice.

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

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer

Objective: To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participants: This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure: Stage IV or recurrent cancer. Main Outcomes and Measures: Care priorities. Results: Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care. This qualitative study assesses patient, family, and clinician perspectives on priority domains for end-of-life care for adolescents and young adults w th cancer.

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

Overcoming Challenges to Surrogate Decision Making for Young Adults at the End of Life

Surrogate decision makers (SDMs) are challenged by difficult decisions at the end of life. This becomes more complex in young adult patients when parents are frequently the SDMs. This age group (18 to 39 years old) commonly lacks advanced directives to provide guidance which results in increased moral distress during end of life decisions. Multiple factors help guide medical decision making throughout a patient's disease course and at the end of life. These include personal patient factors and SDM factors. It has been identified that spiritual and community group support is a powerful, but inadequately used resource for these discussions. It can improve patient-SDM-provider communications, decrease psycho-social distress, and avoid unnecessary interventions at the end of life.

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

The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.

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

The role of family caregiver's sense of coherence and family adaptation determinants in predicting distress and caregiver burden in families of cancer patients

Background: Most cancer patients' families suffer from maladaptation which increases family distress and caregiving burden. This study was conducted to explore the relationship between these maladaptation indicators, and the sense of coherence (SOC) of family caregivers alongside other family resilience determines among family caregivers of cancer patients. Methods: A total of 104 family caregivers of cancer patients were included in this cross-sectional study. They answered three questionnaires to assess family resilience factors: Family Inventory of Resources for Management (FIRM), Family Crisis Oriented Personal Evaluation Scales (F-COPES), and SOC scale. In addition, family maladaptation factors were determined by two instruments, including Family Distress Index (FDI) and Caregiver Burden Inventory (CBI). Results: The results of this study showed that the FIRM and the SOC together were responsible for 35% and 43% of the variances in FDI and CBI scores, respectively (P < 0.001). "Reframing", the subscale of the F-COPES, significantly predicted the variances of FDI (β = −0.26, P = 0.01) and CBI scores (β = −0.21, P = 0.04). Moreover, "Mastery and health", the subscale of the FIRM, significantly predicted the variances of FDI (β = −0.38, P < 0.01) and CBI scores (β = −0.21, P = 0.02). Conclusions: Family caregiver's SOC alongside other family resilience determinants plays a significant role in alleviating family distress and caregiver burden. It is suggested that palliative care providers consider family caregivers' SOC in developing a psychological intervention plan to improve family resilience in families of cancer patients.

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

Oral Care Experiences of Palliative Care Patients, Their Relatives, and Health Care Professionals: A Qualitative Study

Background: Oral symptoms in a growing number of palliative care patients are often neglected. Dental professionals are not always involved in palliative care. Oral care is often inadequately delivered to palliative care patients, while oral problems can affect the quality of life. Methods: A qualitative study was conducted to explore oral care experiences of palliative care patients, their relatives, and health care professionals (HCPs). Four patients, 4 relatives, and 4 HCPs were interviewed in a hospice. Transcripts were analyzed using thematic analysis and revealed 3 themes. Findings: Patients who were capable of performing oral care mainly brushed their teeth and looked after their dentures. Other care tended to be carried out by relatives and HCPs, adapted based on a person's level of consciousness. When describing the effects on oral health, relatives and HCPs tended to focus on xerostomia, whereas patients provided detailed accounts denoting the psychological and social impact of oral symptoms. Perceptions of enablers and barriers to oral care differed between groups. Conclusions: Patients reported lack of access to professional dental care and patients' fatigue were the main barriers to oral care. Nevertheless, there is great scope for further research into good oral care practices identified in this study and possible implementation in other settings.

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

Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19

Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

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

‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting

Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. Participants: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.

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

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

Background: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care. Design: Systematic review and narrative synthesis of original peer-reviewed research published between January 2000 and March 2020. Data sources: Medline, CINAHL, Embase, AMED, PsycINFO and PsycARTICLES. Results: After full-text screening, 10 studies were included. We identified that patients and family caregivers in palliative care can support one another by mutually acknowledging the challenges they face, by remaining positive for one another and by jointly adapting to their changing roles. However, patients and family caregivers may not routinely communicate their distress to each other or reciprocate in distress disclosure. A lack of mutual disclosure pertaining to distress can result in conflict between patients and family caregivers. Conclusions: Few studies have focused in whole or in part, on reciprocal dimensions of support provision between patients with advancing non-curable conditions, and their family caregivers in palliative care. Further research is required to identify key domains of mutual support between patients and family caregivers in palliative care.

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

The Mutual Effects of Perceived Spiritual Needs on Quality of Life in Patients with Advanced Cancer and Family Caregivers

Background: Perceived spiritual needs may increase when patients with advanced cancer and their family caregivers are confronted with the challenges of physical and psychological distress. Given the intertwined relationships between patients and family caregivers, their interdependence should be considered to understand how perceived spiritual needs affect the quality of life of their own and of their partner. Methods: This study used the Actor-Partner Interdependence Model as the conceptual model to investigate the mutual effects of perceived spiritual needs on the quality of life in patients with advanced cancer and their family caregivers after being admitted to hospice. Findings: This cross-sectional study used the baseline data of a large clinical trial and identified that patients with cancer and their family caregivers perceived similar spiritual needs associated with the community and outlook needs and had fewer unmet spiritual needs. After controlling for partner effects, perceived outlook needs shown in patients significantly predicted their own functional well-being and social/spiritual well-being. Outlook and community needs perceived by family caregivers also significantly predicted their own mental health. Conclusion: Although partner effects were not shown as expected, the findings provide insight into the mutuality of spirituality and demonstrate the necessity of providing timely and ongoing spiritual assessment and care. 

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

Mortality communication and post-bereavement depression among Danish family caregivers of terminal cancer patients

Purpose: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008). Methods: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative. Results: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement. Conclusion: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions. 

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

The monetary valuation of informal care to cancer decedents at end-of-life: Evidence from a national census survey

Background: Carers’ end-of-life caregiving greatly benefits society but little is known about the monetary value of this care. Aim: Within an end-of-life cancer setting: (1) to assess the feasibility and content validity of a post-bereavement measure of hours of care; and (2) to obtain a monetary value of this informal care and identify variation in this value among sub-groups. Design and setting: A census based cross-sectional survey of all cancer deaths from a 2-week period in England collected detailed data on caregiving activity (10 caregiving tasks and the time spent on each). We descriptively analyse the information carers provided in ‘other’ tasks to inform content validity. We assigned a monetary value of caregiving via the proxy good method and examined variation in the value via regression analysis. Results: The majority of carers (89.9%) were able to complete the detailed questions about hours and tasks. Only 153 carers reported engaging in ‘other’ tasks. The monetary value of caregiving at end-of-life was £948.86 per week with social and emotional support and symptom management tasks representing the largest proportion of this monetary valuation. Time of recall did not substantially relate to variation in the monetary value, whereas there was a stronger association for the relationship between the carer and recipient, carer gender and recipient daily living restrictions. Conclusion: The monetary valuation we produce for carers’ work is substantial, for example the weekly UK Carers’ Allowance only amounts to 7% of our estimated value of £948.86 per week. Our research provides further information on subgroup variation, and a valid carer time instrument and method to inform economic evaluation and policy.

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

Long-Term Effect of Receiving a Family Strengths-Oriented Intervention on Family Cancer Caregiver Stress, Anxiety, and Depression Symptoms: A Longitudinal Quasi-Experimental Study

Objectives: The aim of this longitudinal study was to evaluate the long-term effects of providing a therapeutic conversation intervention, based on Family Systems Nursing, to family caregivers of a close relative with advanced cancer over the period before and during bereavement. Background: To prevent adverse outcomes, caregivers need ongoing support that begins pre-loss and extends into the post-loss period. Methods: This study employed a one-group pre-test, post-test quasi-experimental design. Twenty-four caregivers participated in two intervention trials conducted over a 42-month period, receiving two intervention sessions pre-loss (Trial 1) and one intervention session post-loss (Trial 2). Results: Significant decreases in anxiety and stress were noted over the three post-loss assessments. The final post-loss stress outcome was significantly lower than the first pre-loss score. For the depression score, there was not a significant change over time within the pre- or post-loss period. Conclusions: The findings provide evidence of decreasing anxiety and stress following the implementation of an extended family nursing intervention for bereaved family caregivers.

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

Longitudinal family caregiving experiences in heart failure: Secondary qualitative analysis of interviews

Background: Considering the potential impacts of family caregivers on heart failure management and the costs of healthcare, health professionals need to pay attention to the challenges faced by family caregivers. Methods: This study longitudinally explored the caregiving experiences of family caregivers of persons with heart failure. Serial interview scripts collected from 53 family caregivers were analyzed using a content analysis method. Findings: The following themes emerged: (1) accumulating knowledge and skills for caregiving; (2) losing a sense of control; (3) balancing an unstable life; (4) constructing illness memory; (5) centering the patient in daily life; (6) accepting the loss of a family member; (7) coping with grief by drawing on social support; (8) facing financial responsibility; and (9) rethinking hospice care. Conclusions: Family caregivers experience concern about unpredictable caregiving years, disease's fluctuating symptoms and poor prognosis. More educational opportunities, financial counseling programs, and palliative care consultations should be provided.

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

'Living in parallel worlds' – bereaved parents' experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents' experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in 'parallel worlds' throughout the end of life period. In one world, 'living in the moment', cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as 'intermitted glimpses that death is approaching', shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly 'falling off the cliff'; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

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

Live hospice discharge: Experiences of families, and hospice staff

Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. Methods: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). Results: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. Conclusion: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. Practice Implications: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed. 

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

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

Objectives: To describe communication regarding cancer patient's end-of-life (EoL) wishes by physicians and family caregivers. Methods: An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results: For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was "clearly the best for the patient" or that it was "not necessary to discuss treatment with the patient". Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). Conclusions: There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

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

“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

Background: Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. Methods: A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Findings: Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Conclusions: Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.

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

Informal Family Caregiving at the End of Life: A Discursive Analysis

Background: Shifts in locations and levels of care and changing demographics have created a high demand for informal family caregivers. The U.S. healthcare system could not sustain the financial or human resources necessary to meet the needs of care recipients who are dying without the assistance of informal family caregivers. End-of-life caregivers pay a price— emotional, social, financial, and physical—throughout the caregiving process. Many factors contribute to the cost of caregiving, such as caregiver distress and burden. Despite the extensive scientific literature on caregiving at the end of life, necessary evidence to inform nursing science in ways that adequately and appropriately support and sustain those healthy informal family caregivers providing end-of-life care remains unknown. No research to date has approached this problem from a linguistic standpoint. Methods: This study used discourse-based analysis to examine a qualitative secondary dataset to understand which aspects of self (caregiver) and other (care recipient) are revealed through caregiver discourse and how a caregiver’s perception of self and the care recipient change over time. Principles of discourse analysis were applied to develop an analytic framework and explore the linguistic cues (i.e., grammar, reference, identity, deixis, stance, indexicality and agency) expressed by a caregiver in their role as caregiver. Findings: Findings demonstrated the usefulness of a discourse-based analytic method as a new approach in the reuse of large qualitative secondary datasets. In addition, linguistic cues were revealed about how a caregiver perceives self and the care recipient over time. Results established an analytic framework that can be applied to a larger sample of this dataset to more deeply and precisely reveal discursive cues within one End-of-Life Caregiving Trajectory (expected-death) and across all three trajectories (expected-death, unexpected-death and mixed-death). Understanding a caregiver’s discursive cues may give clinicians the ability to better identify subtle yet important expressions of caregivers’ perception of self and others in the caregiving role. Conclusions: Further analysis is needed to identify how these linguistic patterns can lead to interventions that support informal family caregivers. Timely and appropriate interventions in times of uncertainty can mitigate negative outcomes for the caregiver and care recipient, resulting in a healthy caregiving workforce.

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

Informal caregivers’ preparation and administration of home hospice prescribed injectable subcutaneous drugs – a prospective observational pilot study

Introduction: Patients at the end-of-life often require subcutaneously administered medications. At present it is impossible for hospice home care nurses to prepare ampule drugs before each administration. Aim of the study: To assess the feasibility of the preparation and administration of these drugs in practice. Material and methods: The training was performed on 37, not previously instructed, adult informal caregivers. A written medical order from the authorial home medication template and the step-by-step drug preparation instruction were used. The percentage of persons who successfully passed the training self-performed the procedure properly directly after the education and a week later were assessed. We monitored the adverse events in drug preparation or administration and the number of both planned and intervention visits of the hospice team, external consultations, and hospitalisations within a week of observation. Results: The educated persons (typically close female relatives) described the procedure as easy to perform. All of them were able to prepare drugs properly and were confidently convinced of it, both directly after the training and after a week of practice. There were few local adverse events of subcutaneous injections. In one case an incorrect drug dose was noticed. Thirty-four patients remained under hospice home care until their death. Two hospice ward deaths were associated with the increasing dependency on incremental caregivers’ insufficiency, and one hospital death was linked to the rapid deterioration of the patient’s condition. Conclusions: The effective training of informal caregivers of hospice home care patients in the independent and safe preparation and administration of ampule drugs is feasible.

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

Improving the End-of-Life Experience for Family Members of Cancer Patients Who Die on the Oncology Ward: The Three Wishes Project (SCI922)

Background: Although death is not an uncommon outcome for cancer patients who are admitted to the hospital, there are few inpatient interventions in oncology designed to create a personalized, compassionate end-of-life (EOL) experience for patients and families. The 3 Wishes Project (3WP) is a program where clinicians implement final wishes for dying patients. 3WP has been shown to be effective at improving the EOL experience for family members of patients who die in the intensive care unit but has not been evaluated on an oncology specific ward. Research Objectives: To implement the 3WP on an oncology ward and evaluate its influence on family members' experience of their loved one's EOL. Methods: When a patient's probability of dying is greater than 95% or if the patient will be transitioned to hospice on this oncology ward, patients and families are invited to participate in the 3WP. Wishes are elicited, implemented, documented, and categorized. Semi-structured qualitative interviews were conducted with eleven family members of cancer patients who participated in the 3WP. Interviews were digitally recorded, transcribed, and analyzed using content analysis. Results: During a course of 20 months, 144 wishes were implemented for 42 cancer patients and their families, at an average cost of $56. The majority (63%) of the 144 wishes were to humanize the environment. The overarching theme identified through the analysis of transcripts from the family interviews was that 3WP facilitates three transitions at the EOL: the transition from multiple hospital admissions to the final admission, the transition of the family member from a primary caregiver role to a family member role, and the transition from a focus on the present to a focus on legacy. Conclusion: 3WP is an intervention that can be implemented on the oncology ward to help facilitate key transitions that improve the EOL experience for families of dying cancer patients.

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

The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data

Background: Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment. However, as the disease progresses and cardiac function deteriorates, exacerbations of acute decompensation can lead to what is often perceived to be 'sudden' death. The aim of this study is to explore the impact of uncertainty on how death is remembered by bereaved family members of people with heart disease. Methods: Thematic analysis of free text collected during a postal survey of bereaved family's experiences of healthcare services in the last 3 months of life using the New Zealand version of the VOICES questionnaire was undertaken. Data was analysed using a three-dimensional conceptual framework of "scientific uncertainty". Results: Eight hundred and twenty-seven completed questionnaires were received of which 12.6% (n = 105) indicated that they had cared for someone at the end of life with cardiac disease. Experiences of uncertainty were found to have a significant impact upon bereaved family. Four key themes were identified; distrust in healthcare professionals, stories left incomplete, loss, regret and missed opportunity and disempowerment. Conclusions: This study highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. Timely and sensitive conversations regarding the uncertainty of when death may occur is an important factor in ensuring that bereaved family are not left with unresolved narratives. Reframing how we think and talk about uncertainty in end of life care is important, as clinicians' uncertainties may not always reflect or match up with families' uncertainties. Being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.

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

The Me in We dyadic communication intervention is feasible and acceptable among advanced cancer patients and their family caregivers

Background: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients’ and caregivers’ individual perspectives, and those they share. Aim: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. Design: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. Setting/participants: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. Results: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. Conclusions: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.

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

"I Wish I Could Die So I Would Not Be in Pain": A Qualitative Study of Palliative Care Needs Among People With Cancer or HIV/AIDS in Vietnam and Their Caregivers

Background: Although cancer and HIV/AIDS are common causes of death in Vietnam, limited data exist on their palliative care needs. As palliative care becomes part of Universal Health Coverage, evidence is needed to scale up appropriate care. Objectives: To elicit from people with cancer or HIV/AIDS in Vietnam, and their caregivers, the specific multidimensional symptoms and concerns that cause serious health-related suffering. Methods: Semistructured, qualitative, in-depth interviews were conducted with stage III or IV cancer patients, people with HIV/AIDS, and their caregivers at three cancer treatment centers and two HIV/AIDS treatment centers in northern, central, and southern Vietnam. Interviews were analyzed using thematic analysis. Results: Sixty people were interviewed (21 cancer patients, 20 people with HIV/AIDS, 19 caregivers). Pain and other physical symptoms severely impacted their daily lives. Psychological distress-including sadness, depression, worry, and a feeling of having no future-was mentioned frequently, and it was exacerbated by disease progression and by social problems such as financial difficulties and, among people with HIV/AIDS, stigma. Caregivers also suffered physically and psychosocially. Spirituality emerged as a source of strength for patients. Findings: highlighted patients' and family caregivers' desire for more information about diagnosis, prognosis, and treatment, a shift toward individual decision-making. Conclusion: The findings demonstrate common, multidimensional, and severe suffering among people living with cancer or HIV/AIDS and their caregivers in Vietnam. These qualitative data should guide development of optimum clinical assessment tools and palliative care services for these populations.

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

I heard it on the radio: supporting Pacific family carers through the development of culturally appropriate resources, a descriptive qualitative study

Background: New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Objectives: Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers' views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. Methods: This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group's recommendations that were informed by a thematic analysis of the focus group data. Findings: The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video.

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

"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning

Background: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme. Method: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach. Results: Participants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs. Conclusion: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death. 

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

How Do Claims‐Based Measures of End‐of‐Life Care Compare to Family Ratings of Care Quality?

OBJECTIVES: Assess whether frequently‐used claims‐based end‐of‐life (EOL) measures are associated with higher ratings of care quality. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: Deceased fee‐for‐service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after‐death survey (n = 2,559). MEASUREMENTS: We examined claims‐based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of "excellent" care in the last month of life and reports that hospice care began "at the right time." Associations were assessed with logistic regression, adjusted by patient characteristics. RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference −10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference −8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference −10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1–2 days before death 60.2% vs hospice 7–13 days 74.9%; adjusted difference +14.7 percentage points). CONCLUSIONS: Claims‐based measures of EOL care for cancer patients that reflect avoidance of hospital‐based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.

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

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. Objectives: This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

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

Health care staff's strategies to preserve dignity of migrant patients in the palliative phase and their families. A qualitative study

Aims: To determine registered nurses' and care assistants' difficulties and strategies for preserving dignity of migrant patients in the last phase of life and their families. Background: Preserving dignity of patients in a palliative phase entails paying attention to the uniqueness of patients. Migrant patients often have particular needs and wishes that care staff find difficult to address, or meet, and hence the patient's dignity might be at stake. Methods: We performed five focus group discussions with care staff and one with key figures with diverse ethnic backgrounds in the Netherlands (2018–2020). Thematic analysis was used. Results: Care staff creatively safeguarded the patient's dignity in daily care by attending to personal needs concerning intimate body care and providing non‐verbal attention. Care staff had difficulties to preserve dignity, when the patient's family engaged themselves in the patient's choices or requests. According to care staff, the interference of family impeded the patient's quality of life or threatened the patient's dignity in the last days, or family member's choices (seemingly) prevailed over the patient's wishes. Care staff safeguarded dignity by catering to cultural or religious practices at the end of life and employing cultural knowledge during decision making. Key figures emphasized to make decisions with patient and family together and to listen more carefully to what patients mean. Bypassing family was experienced as harmful, and repetitively informing family, about, for example, the patient's disease or procedures in the nursing home, was experienced as ineffective. Conclusion: To preserve the patient's dignity, attention is needed for relational aspects of dignity and needs of family, next to patients' individual needs. Impact: Care staff should be supported to employ strategies to engage family of migrant patients, by, for example, acknowledging families' values, such as giving good care to the patient and the importance of religious practices for dignity.

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

Grieving in a Pandemic: How COVID-19 Has Impacted Bereavement for Family Caregivers of Hospice Cancer Patients (SCI948)

Objectives: 1. Analyze 1-4 aspects of bereavement that have been impacted by COVID-19 for family caregivers of advanced cancer hospice patients. 2. Evaluate the strategies implemented by family caregivers to overcome isolation and maintain connectedness during the Coronavirus pandemic. Background: As Coronavirus has spread to the US, it has changed family caregivers' hospice experiences including bereavement. To examine the impact of a global pandemic on connectedness and isolation in bereavement among hospice family caregivers using automated phone diaries. Aim: We examined phone diaries of bereaved hospice family caregivers of cancer patients from a larger multi-site longitudinal study for COVID and non-COVID related references to isolation and connectedness. Methods: Participants were asked to complete daily phone diaries through an automated system from the time they consented to 6 months after the patient's death. Recordings were selected between March 13 and May 15, 2020 from bereaved caregivers. Summative content analysis using deductive codes was conducted to examine diaries for physical/social isolation and connection. Isolation was defined as having no other person in close physical or social contact during bereavement, while connection was defined as feeling attached to others during bereavement. Results: Bereaved caregivers' diaries (N=6; bereavement range=2-7 months) were analyzed. Each caregiver completed audio diaries over the bereavement period (range=1 to 42). Of the 59 diaries, 32 (54.24%) made reference to the coronavirus pandemic. Coronavirus references were mentioned by all 6 participants. COVID-related connection was identified 15 times (25.42%), while COVID-related isolation was identified 32 times (54.24%). Non-COVID related connection was identified 20 times (62.5%), while non-COVID related isolation was coded only twice (13.33%). Conclusions and implications: Findings from this study suggest COVID-related social isolation was integral to the bereavement experiences of family caregivers. However, despite the pandemic, caregivers expressed maintaining connectedness to others. This study has implications for hospice support services for bereaved caregivers during the pandemic.

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

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries

Background: Recognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods: A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. Results: Of 1,683 potential participants, 914 i‐CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion: This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). Implications for Practice: Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement. Disparities exist in the quality of end‐of‐life care. This article assesses the quality of care for dying cancer patients, as perceived by bereaved relatives, within hospitals in seven European and South American countries.

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

"Going Home [Is] Just a Feel-Good Idea With No Structure": A Qualitative Exploration of Patient and Family Caregiver Needs When Transitioning From Hospital to Home in Palliative Care

Context: Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. Objectives: 1) Explore patients' and caregivers' expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. Methods: Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. Results: Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). Conclusion: Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition. 

 

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

‘Food for Life and Palliation (FLiP)’: a qualitative study for understanding and empowering dignity and identity for terminally ill patients in Asia

Objectives: With ‘eating’ posited as Singapore’s domestic pastime, food experiences for Singaporeans constitute national, social, ethnic and personal identities. However, though they form significant parts of Singaporean existence across the lifespan, studies and observations about food experiences for individuals at the end of life remain noticeably absent. Extant literature continues to focus on nutritional practice during illness and the active dying process, forgoing the rich lived experiences of food in the lives of patients and their families. The current work sought to qualitatively extricate through a constructivist phenomenological approach, the ‘food voices’ of Singaporean palliative care patients and their families. It also simultaneously aimed to assess the role of food in bolstering their subjective feelings of dignity and identity, while also considering resultant clinical implications. Setting: Homes of patients within the Singaporean palliative care setting. Participants: A subset of qualitative data (n=25) in the form of dyadic interviews with terminally ill patients and a family caregiver was generated from a larger family dignity intervention study that explored the experience of living and dying among Asian palliative care patients and their families. Results: Framework analysis with both inductive and deductive approaches informed by the a priori domain of food resulted in the generation of four major themes, each with three subthemes. These were organised into the Food for Life and Palliation model. They include: (1) feeding identity and familial bonds, (2) liminal subsistence in illness transition, (3) food becoming lineage, and (4) compassionate nourishment. Conclusions: Clinical implications are considered; including food-focused interventions that enhance dignity, promote meaning-making and facilitate legacy construction. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products.

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

Feasibility of an Intervention Study to Support Families When Their Loved One Has Life-sustaining Therapy Withdrawn

Background: This investigation addressed family member perceptions of preparation for withdrawal of life-sustaining treatment in the intensive care unit. These families are at a high risk for psychosocial and physical sequelae. Methods: The quantitative results of this mixed methods study are reported. A control group received usual care and an educational booklet component of the intervention. The experimental group received the above plus exposure to comfort cart items and additional psychological support. Results: Twenty-eight family members enrolled over a 13-month period. Sixty-one percent (10 intervention, 7 control) completed the follow-up. Fourteen family members (82%) recalled the booklet. Some family members reported moderate to severe depression (12.5%), anxiety (12.5%), and stress (12.6%). Satisfaction with care (83.7%-85.2%) and family member well-being (44.1) were within the norm. Short Form-36 physical component score was higher than the norm, and the mental component score was lower than the norm. Conclusions: This study demonstrated feasibility and acceptability of the interventions and follow-up questionnaires when families make the difficult decision to withdraw treatment. Strategies are suggested to strengthen statistical power.

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

Family perceptions of quality of end of life in LGBTQ+ individuals: a comparative study

Background: Members of the lesbian, gay, bisexual, transgender, and queer community have encountered discrimination and stigmatization related to sexual orientation and/or gender identity both within healthcare establishments and in the larger community. Despite the literature describing inequities in healthcare, very little published research exists on the experiences of lesbian, gay, bisexual, transgender, and queer patients and family members in hospice care. Methods: A quantitative comparative descriptive design explored the difference in end-of-life experiences between a lesbian, gay, bisexual, transgender, and queer and non-lesbian, gay, bisexual, transgender, and queer cohort. One hundred and twenty-two family members of individuals who have died while under hospice care in the past 5 years completed the Quality of Dying and Death Version 3.2a Family Member/Friend After-Death Self-Administered Questionnaire. Results: Comparison of the experiences of the lesbian, gay, bisexual, transgender, and queer cohort (n = 56) and non-LGBTQ cohort (n = 66) yielded varying results, with the LGBTQ cohort experiencing lower quality end of life in some Quality of Dying and Death measures and no statistically significant difference from the non-LGBTQ cohort in others. Discussion: The findings from this study in combination with previously published works on lesbian, gay, bisexual, transgender, and queer health support the position that hospice providers must take concrete steps to ensure that professional caregivers and office staff are qualified to meet the needs of this marginalized population.

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

Family Caregiving and Place of Death: Insights From Cross-national Analysis of the Harmonized End-of-Life Data

Objectives: Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe. Method: We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS). We conducted multinomial logistic regression on 7,113 decedents from 18 European countries and 3,031 decedents from the United States to determine if family caregiving, defined based on assistance with activities of daily living, was associated with death at home versus at a hospital or nursing home. Results: Family caregiving was associated with reduced odds of dying in a hospital and nursing home, relative to dying at home in both the United States and Europe. Care from a spouse/partner or child/grandchild was both more common and more strongly associated with place of death than care from other relatives. Associations between family caregiving and place of death were generally consistent across European welfare regimes. Discussion: This cross-national examination of family caregiving indicates that family-based support is universally important in determining where older adults die. In both the United States and in Europe, most care provided during a long-term illness or disability is provided by family caregivers, and it is clear families exert tremendous influence on place of death.

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

Family Caregivers' Emotional Preparedness for Death is Distinct from Their Cognitive Prognostic Awareness for Cancer Patients

Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers. Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year. Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients. Predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation. Results: Agreement between family caregivers' emotional preparedness for death and cognitive PA decreased slightly (54.73%–43.64%) from 181–365 to 1–30 days before the patient's death, with kappa values (95% confidence interval) from −0.060 (−0.123 to 0.003) to 0.050 (−0.074 to 0.174), indicating poor agreement. Participants were more likely to report adequate emotional preparedness for death if they had financial sufficiency, more contact/communication with the patient, lower caregiving burden, and stronger perceived social support. Family caregivers were more likely to have accurate PA if they were 56–65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden. Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.

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

Family Caregiver Problems in Outpatient Palliative Oncology

Background: Understanding challenges of family caregivers within specific palliative care contexts is needed. Objective: To describe the challenges of family caregivers of patients with cancer who receive outpatient palliative care. Methods: We summarized the most common and most challenging problems for 80 family caregivers of cancer patients receiving outpatient palliative care in the midwestern United States. Results: Caregiver worry and difficulty managing side effects or symptoms other than pain, constipation, and shortness of breath were most common. "Financial concerns" was cited most as a "top 3" problem. Almost half of caregivers reported "other" problems, including family members, patient physical function, care coordination, and patient emotional state. Conclusions: The most common and most challenging problems of family caregivers of cancer patients receiving outpatient palliative care may differ from those experienced in other serious illness care contexts. Comparative studies on caregiver problems across the cancer care continuum can help develop and refine interventions.

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

Family Caregiver Partnerships in Palliative Care Research Design and Implementation

The article discusses the effectiveness of family caregiver partnerships in the design and implementation of pediatric palliative care (PPC) research. Also cited are the importance of the perspectives of family caregivers, clinicians and researchers in improving research, and the principles of patient- and family-centered research like honesty, cultural competency, and transparency.

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

Faith-sensitive end of life care for children, young people and their families

This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some of the most prevalent religions within the UK. This article is intended to give points for discussion and consideration, but health professionals are encouraged to speak to every patient and family on an individual level to ensure an understanding of their personal beliefs. Although there is a range of literature discussing faith during end-of-life care, there is litte that outlines the practical specifics and for this reason some of the supporting literature in this article is dated and, where possible, this has been supported with contemporary sources.

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

Factors facilitating positive outcomes in community-based end-of-life care: A cross-sectional qualitative study of patients and family caregivers

Background: Delivery of community-based end-of-life care for patients and family members has been recognized as an important public health care approach. Despite differences in different healthcare settings and the significance of a person-centered approach, little research has investigated facilitators of community-based end-of-life care from the perspective of service recipients. In particular, there has been limited exploration of strategies to ensure positive outcomes at an operational level. Aim: To explore factors facilitating positive end-of-life care provision in community-based settings and how these are achieved in practice, from the perspectives of patients and family caregivers. Design: A qualitative cross-sectional descriptive study was undertaken through semi-structured interviews with patients and family caregivers subjected to thematic analysis. Setting/participants: Ten patients and 16 family caregivers were recruited from an end-of-life community care program provided by four non-governmental organizations in Hong Kong. Results: Seven core themes were identified: positive emotions about the relationship, positive appraisals of the relationship, care through inquiring about recipients’ circumstances, instrumentality of care (i.e. information, coaching on care, practical help, psychological support, multiple activities), comprehensiveness of care (i.e. diversity, post-death care, family-level wellbeing), structure of care (i.e. timely follow-up, well-developed system), and qualities of workers. Conclusions: Improvement in service quality might be achieved through alternating the perceptions or emotional reactions of care recipients toward care providers and increased use of sensitive inquiry. Comprehensive care and positive outcomes might be facilitated by addressing the dualities of care by providing diverse choices in pre-death and post-death care.

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

Exploring the meaning of dignity at end of life for Chinese Canadians caregivers: A qualitative cross-cultural study

Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study's objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects' acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author's knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.

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

Exploring Family Caregiver Communication Difficulties and Caregiver Quality of Life and Anxiety

Background: When family caregivers are involved in patient care, both patients and caregivers experience better clinical outcomes. However, caregivers experience communication difficulties as they navigate a complex health care system and interact with health care providers. Research indicates that caregivers experience a communication burden that can result in topic avoidance and distress; however, little is known about how burden stemming from communication difficulties with health care providers relates to caregiving outcomes. Objectives: To investigate how family caregiver communication difficulties with health care providers influence caregiver quality of life and anxiety. Methods: Data were collected in a cross-sectional online survey of 220 caregivers with communication difficulties resulting from caregiver avoidance of caregiving-related topics, inadequate reading and question-asking health literacy, and low communication self-efficacy. Results: Caregiver outcomes were not affected by reading health literacy level but did differ based on question-asking health literacy level. Adequate question-asking health literacy was associated with lower anxiety and a higher quality of life. Caregivers who avoided discussing caregiving topics reported higher anxiety and lower quality of life and caregivers with increased communication self-efficacy reported a higher quality of life. Conclusion: Involvement of family caregivers in care is likely to require tailored approaches that address caregiver communication and health literacy skills. Findings from this study suggest that hospice and palliative care providers should identify and provide support for caregiver communication difficulties in order to positively influence caregiver quality of life and anxiety.

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

Experiences with health care practitioners among advanced cancer patients and their family caregivers: A longitudinal dyadic study

Background: Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. Methods: The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient‐caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor‐partner interdependence framework was used for analysis. Results: Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, –0.56; 95% CI, –1.07 to –0.05) or their caregivers (AME, –0.58; 95% CI, –0.97 to –0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, –1.62; 95% CI, –2.02 to –1.23) and experienced financial difficulties (AME, –2.31; 95% CI, –3.77 to –0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, –3.29; 95% CI, –6.45 to –0.14). Conclusions: Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners. Reports from patients with advanced cancer and their caregivers about physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. Addressing the well‐being of both members of the dyad and reducing caregivers' uncertainty regarding treatment goals may improve reported experiences with health care providers. 

 

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

The experiences of well-being of family caregivers in palliative care: A qualitative study using thematic analysis

Background: Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Methods: Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Findings: The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. The 5 themes provide 6 constructs for independent intervention. Conclusions: Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.

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

The Experiences of Family Members of Ventilated COVID-19 Patients in the Intensive Care Unit: A Qualitative Study

Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members' experiences and support needs. Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU). Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis. Setting/Participants: Ten family members of adult COVID-19 patients in the ICU. Result: Seven key themes represented family members' experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19's effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members' feelings about the patient's diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones. Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family's burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.

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

Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study

Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations.

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

'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta‐synthesis'

Introduction: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare. Objective: This meta‐synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care. Methods: A systematic review was performed in six databases, and 14 studies were included in this meta‐synthesis. Results: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end‐of‐life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering. Conclusion: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi‐professional psychosocial care.

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

The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis

Background: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. Aim: To understand patient, family, clinicians' and volunteers' experience of delirium and its care in palliative care contexts. Design: Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417). Data sources: The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000–2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers. Results: A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high (n = 5), medium (n = 8) or low (n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians' responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care. Conclusions: Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients' multi-dimensional needs to be met.

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

Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking

Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED. Objective: To explore the experiences of caregivers who supported a patient through VSED. Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED. Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child. Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.

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

Existential distress in patients with advanced cancer and their caregivers: study protocol of a longitudinal cohort study

Introduction: At the end of life, patients with advanced cancer and their informal caregivers may confront multiple existential concerns. Despite the strong potential to alleviate existential distress through psychosocial interventions, existential distress and its impact on healthcare outcomes have not yet been studied systematically. We aim to investigate the frequency, longitudinal trajectory and predictive impact of existential distress on end-of-life outcomes. We further aim to determine patients’ and caregivers’ specific need for and utilisation of psychosocial support for existential distress. Methods: This longitudinal cohort study will consecutively recruit 500 patients with advanced cancer and 500 caregivers from oncological outpatient and inpatient clinics. Participants will complete self-report questionnaires (sociodemographic and disease-related characteristics, existential distress, end-of-life outcomes, resources and support needs) at five points of assessment (at baseline and after 3, 6, 9 and 12 months). At baseline and 6-month follow-up, we will conduct structured diagnostic interviews to assess mental disorders. Statistical analyses will include descriptive statistics to determine the prevalence of existential distress, mental disorders and end-of-life outcomes; multiple linear and logistic regression analyses to calculate the predictive impact of existential distress on end-of-life outcomes; and growth mixture models to analyse longitudinal trajectories of existential distress. Discussion: This study will provide comprehensive knowledge about patients’ and caregivers’ existential concerns. The longitudinal empirical data will allow for conclusions concerning the frequency and course of existential distress throughout 1 year. This important extension of existing cross-sectional research will contribute to further develop targeted psychosocial interventions. Profiles of existential distress may be applied by clinicians from multiple professions and help to address existential concerns effectively. Ethics and dissemination: The study was approved by the institutional research ethics committee (reference number LPEK-0177). Results will be presented at scientific conferences and published in peer-reviewed journals. Other forms of dissemination will include sharing results on the psychometric properties of the structured demoralisation interview with international research groups and communication with healthcare professionals providing psychosocial treatment for patients and caregivers. Following scientific standards, our progress will be regularly updated on ClinicalTrials.gov.Trial registration numberNCT04600206.

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

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

Background: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life.  A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life. Methods: A realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process. Results: Twenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners. Conclusions: Primary care practitioners’ use of tools to assess patients/families’ needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families’ outcomes.

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

End-Of-Life Care Communication in Long-Term Care Among Nurses, Residents, and Families: A Critical Review of Qualitative Research

Background: RNs in long-term care (LTC) are a critical nexus for end-of-life (EOL) care communication with older adult residents and their families. Methods: A critical review of 17 qualitative research studies examined nurses' experience with EOL care in LTC. Results: Findings indicate that time, preparation, advocacy, organizational resources, and a continuous, relational approach support EOL care communication. Regulatory burdens, understaffing, workflow demands, family and organizational dysfunction, anxiety, and depression impede EOL care communication. The current review revealed a gap in the literature describing LTC RNs' unique perspectives and knowledge regarding EOL care communication with residents and families. Conclusions: There is a current, pressing need to understand the facilitators LTC RNs use to overcome obstacles to effective EOL care communication. Future research could inform clinical practice guidelines and EOL care nursing education, enhancing LTC nurses' capacity to develop trust-based relationships and improving the efficacy of current EOL care communication interventions in LTC. [Journal of Gerontological Nursing, 47(7), 43–49.]

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

End-of-Life Assessments and Communication for Dying Patients and Their Families

End-of-life assessments aim to help dying patients and their families plan clinical interventions in advance and prepare them for a peaceful end of life, in which the patient accepts life and death, and the family accepts the patient's departure. It is important to assess whether death is imminent within a few days, because critical hospice care is provided intensively during that period. The following five changes constitute objective evidence of the end of life: diminished daily living performance, decreased food intake, changes in consciousness and increased sleep quantity, worsening of respiratory distress, and end-stage delirium. As subjective evidence, it is suggested that sensitive perceptions of experienced nurses and the feelings of family members caring for patients should also be considered. When notifying a patient or family members that the end of life is approaching, the members of the multidisciplinary hospice team must communicate with each other, share accurate information, and provide consistent explanations. They must also listen to non-verbal communication in an empathic and supportive manner.

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

Empowering Families to Take on a Primary Caregiver Role for Patients with Cancer in India: Promising Strategies, Persistent Challenges, and Tradeoffs (SCI928)

Objectives: 1. Identify the challenges and trade-offs for family members assuming a primary caregiving role to patients with cancer nearing the end of life in India. 2. Consider strategies for supporting family members assuming a primary palliative caregiving role in India. Background As the population on the Indian subcontinent is aging, so too is the incidence of cancer and the need for access to palliative care. Research Objectives Identify provider perspectives on empowering patient family members to assume a palliative caregiving role. Methods: This is a secondary analysis from the PC-PAICE (Palliative Care- Promoting Access & International Cancer Experience) study where we captured the perspectives of 44 interdisciplinary providers from 7 geographically diverse palliative care sites throughout India using a semi-structured interview guide. We identified emergent themes using qualitative content analysis methods with team consensus. Results: Theme 1: Challenge: Cultural beliefs exist that handing off or sharing any primary caregiving is a "sin" and "if they don't take care of the patient then they have done some mistake." Theme 2: Trade-off: Caregivers are overwhelmed with navigating the expectation to take on the caregiver role, when they feasibly cannot, given financial and time constraints. Theme 3: Strategies: Facilitate caregiver buy-in to the idea of palliative care includes linking caregivers to financial resources (e.g. NGO sponsored income-earning opportunities "conduct rehabilitation camps where they teach the patient or the family to make some products"), connecting caregivers to mental health support, and working with caregivers in accommodating other constraints. Conclusion: In India, family members are already primed with the expectation to assume the role of palliative caregiver; this expectation in the face of financial constraints creates a challenging situation for caregivers. Implications for Research, Policy, or Practice: Striking the right balance of what family caregivers in India take on requires acknowledging the trade-offs they might make in other parts of their lives, empowering them through training and linkage to resources, and facilitating a cultural shift to accept palliative care or help from others. Future work should explore these provider themes in interviews with caregivers and patients themselves.

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

The Effects of Counseling about Death and Dying on Perceptions, Preparedness, and Anxiety Regarding Death among Family Caregivers Caring for Hospice Patients: A Pilot Study

Purpose: This pilot study aimed to examine the influence of death counseling on perceptions, preparedness, and anxiety regarding death and dying among family caregivers of hospice patients. Methods: Death counseling developed based on the SPIKES model was provided to 37 family caregivers in a hospice and palliative care unit. Perceptions, preparedness, and anxiety regarding death were assessed with a self-administered structured questionnaire, and participants' scores before and after counseling were compared using the paired t-test. Results: Significant changes were found in perceptions, preparedness, and anxiety regarding death after counseling. Compared to before counseling, the scores for perceptions of death (t=-4.90, P<0.001) and preparedness for death and dying (t=-16.23, P<0.001) improved, while anxiety (t=3.72, P=0.001) decreased after counseling. Some changes were also found in the types of support that family caregivers needed to prepare for the death of their family members in the hospice care unit. Conclusion: The findings demonstrate that death counseling could help family caregivers prepare for the death of their loved ones. Hospice and palliative care providers should play a key role in supporting family caregivers of hospice patients by developing strategies for counseling.

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

The Effectiveness of Bereavement Support for Adult Family Caregivers in Palliative Care: A Meta-Analysis of Randomized Controlled Trials

Purpose: This meta-analysis aimed to summarize and synthesize the effectiveness of bereavement support for adult family caregivers in palliative care. Methods: Meta-analysis was conducted. The databases of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane, Embase, Medline, PubMed, Scopus, and Web of Science were comprehensively searched from inception until January 2020. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and standard methods for conducting a meta-analysis. Data analysis was performed using Comprehensive Meta-analysis version 3.0, and the random-effects model was adopted. Findings: In total, 19 randomized controlled trials with an overall sample size of 2,690 participants met the inclusion criteria. The study showed that bereavement support had a significant effect on reducing grief (Hedges' g score = -0.198; 95% confidence interval [CI] -0.310 to -0.087), depression (Hedges' g score = -0.252; 95% CI -0.406 to -0.098), and anxiety (Hedges' g score = -0.153; 95% CI -0.283 to -0.023); however, high heterogeneity was present. No statistically significant difference was shown for traumatic feelings. Based on moderator analysis, a group format was more effective for grief, a combined individual and group format for depression, and an individual format for anxiety. Bereavement support was more effective when delivered by professionals, when delivered in more than six sessions, and need to be evaluated within 6 months. Conclusions: Bereavement support was effective in reducing grief, depression, and anxiety. The majority of the included studies had moderate heterogeneity, which limited the comparability of the evidence. Therefore, more robust randomized controlled trials are needed to confirm these study results. Clinical Relevance: This meta-analysis provides evidence that bereavement support delivered in the palliative care setting is effective for reducing grief, depression, and anxiety. Nurses and other healthcare professionals can make recommendations for adult family caregivers based on this study in reducing psychological symptoms due to a loss in the palliative care domain.

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

Dying within dyads: Stress, sense of security and support during palliative home care

Objectives: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping. 

 

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

Do-not-resuscitate decision making for terminally ill older patients in the emergency department: An explorative, descriptive inquiry of Chinese family members

Background: This study increases our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in the emergency department. Emergency medical staff should keep abreast of the attitudes and wishes of family members and terminally ill older adults regarding DNR, and initiate DNR decision-making discussions as early as possible. Emergency nurses should pay more attention to the desire of family members to improve the quality of life of terminally ill older adults with DNR. Many terminally ill older adults depend on family members to make medical decisions in China. Many family members find it difficult to make do-not-resuscitate (DNR) decisions in emergency departments (ED). Currently, factors that affect DNR decision making by family members for older adults needing emergency care have not been well studied. Methods: This qualitative inquiry explores factors influencing DNR decision-making among family members of terminally ill older adults in ED. Semi-structured in-depth interviews were conducted for a 12-family member of terminally ill older adults at ED in China. Results: Results of the conventional content analysis showed that family members made DNR decisions based on a wide of reasons: (a) subjective perception of family members, (b) conditions of the terminally ill older adults, (c) external environmental factors, and (d) internal family factors. The findings of this study expand our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in ED.

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

Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

Background: Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. Context: The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. Methods: Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. Results: Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. Significance of results: Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

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

Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study

Background: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. Methods: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. Results: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. Conclusion: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

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

Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers

Background: In Chinese or Eastern society, most end-of-life (EOL) patients still choose to die at home. However, primary family caregivers usually do not prepare themselves to face the death of patients. Therefore, a measurement of the readiness for home-based palliative care for primary family caregivers is needed. Methods: In this study, the readiness for home-based palliative care scale (RHBPCS) for primary family caregivers was developed to assess the readiness of primary family caregivers. This study recruited 103 participants from five branches of one municipal hospital system. The reliability and validity of the RHBPCS was evaluated using expert validity examination, confirmatory factor analysis (CFA), and item analysis. Results: The results showed that the RHBPCS had strong goodness-of-fit and good reliability and validity. Conclusions: In summary, the RHBPCS is suggested for assessing the readiness for home-based palliative care of primary family caregivers.

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

Development of a Decision Aid for Patients and Families Considering Hospice

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration: (NCT03794700 & NCT04458090).

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

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairments—A multicenter prospective study

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

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

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

Objectives: People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6). Results: Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model. Significance of results: New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

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

The determinants of the intensity of home-based informal care among cancer patients in receipt of home-based palliative care

Background: Understanding the determinants of the intensity of informal care may assist policy makers in the identification of supports for informal caregivers. Little is known about the utilization of informal care throughout the palliative care trajectory. Aim: The purpose of this study was to analyze the intensity and determinants of the use of informal care among cancer patients over the palliative care trajectory. Design: This was a longitudinal, prospective cohort design conducted in Canada. Regression analysis using instrumental variables was applied. Setting/participants: From November 2013 to August 2017, a total of 273 caregivers of cancer patients were interviewed biweekly over the course of the care recipient’s palliative care trajectory. The outcome was the number of hours of informal care provided by unpaid caregivers, that is, hours of informal care. Results: The number of hours of informal care increased as patients approached death. Home-based nursing care complemented, and hence, increased the provision of informal care. Patients living alone and caregivers who were employed were associated with the provision of fewer hours of informal care. Spousal caregivers provided more hours of informal care. Patient’s age, sex, and marital status, and caregiver’s age, sex, marital status, and education were associated with the number of hours of informal care. Conclusions: The intensity of informal care was determined by predisposing, enabling, and needs-based factors. This study provides a reference for the planning and targeting of supports for the provision of informal care.

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

Design and Evaluation of a Novel Mobile Phone Application to Improve Palliative Home-Care in Resource-Limited Settings

Context: Mobile health (mHealth) provides an opportunity to use internet coverage in low- and middle-income countries to improve palliative care access and quality. Objectives: This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods: A codesign process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda, and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N = 149 caregivers participated and uploaded n = 837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n = 355 occasions. Results: Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) a need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion: An outcomes-focused app and data dashboard are acceptable to caregivers and health-care professionals. They are beneficial in identifying, monitoring, and communicating patient outcomes and in allocating staff resource to those most in need.

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

Delirium-Related Knowledge, Caregiving Performance, Stress Levels, and Mental Health of Family Caregivers of Terminal Cancer Patients with Delirium in a Hospice Care Unit

Purpose: The purpose of this study was to examine the knowledge, caregiving performance, stress levels, and mental health of family caregivers of terminal cancer patients with delirium, insofar as these characteristics are relevant for delirium. Methods: Between May 1, 2019, and June 1, 2020, 96 family caregivers of terminal cancer patients with delirium completed a structured survey, the results of which were analyzed. Results: The average correct answer rate for delirium-related knowledge was 53.2% across all subcategories, which included knowledge of causes (41.5%), symptoms (65.4%), and caregiving (51.7%). The average score for family caregivers' performance of caregiving for delirium was 2.60 ±0.5, with subcategories including caregiving for patients without delirium (2.16±0.95), caregiving for patients with delirium (2.84±1.01), and stress related to caregiving for delirium (39.88±16.55), as well as categories such as patient-related caregiving (44.32±28.98), duty-related caregiving (44.21±30.15), and interpersonal relationship-related caregiving (22.35±25.03). For mental health, the average score among family caregivers was 1.96± 0.70, with the highest score being for the category of additional items (2.28±0.84). Family caregivers of patients with hyperactive delirium as the delirium subtype had higher scores for caregiving performance than caregivers of patients with mixed delirium. Conclusion: Scores for the delirium-related knowledge and caregiving performance of family caregivers were low, while their caregiving stress levels were high due to their lack of knowledge and experience. This indicates the importance of delirium-related education for family members of patients with delirium and the necessity of developing nursing intervention programs to help manage stress and promote mental health among family caregivers.

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

A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections

Background: Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life. Methods: Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results: The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion: This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution: Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops. 

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

Death and Grieving for Family Caregivers of Loved Ones With Life-Limiting Illnesses in the Era of COVID-19: Considerations for Case Managers

Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice: Safety precautions are necessary for families and informal caregivers when death occurs during the COVID-19 era. We need to understand the various constraints of existing resources associated with the death of a loved one (capacity limitations at funeral home, delayed memorial services) and devise creative alternatives. We must acknowledge the increased potential for delayed/prolonged/complicated grief. Identification of resources to support caregivers/families in coping with grief and loss during the pandemic restrictions is needed—mobilizing support in novel ways.

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

Course of Changes in Emotional Preparedness for Death and Its Associations With Caregiving Outcomes for Family Caregivers of Terminally Ill Cancer Patients Over Their Last Year of Life

Background: Preparing family caregivers for a patient's death is an integral component of quality end-of-life care, but temporal changes in emotional preparedness for death and its associations with caregivers' psychological well-being or quality of life (QOL) while providing end-of-life caregiving are under-researched. Our study was conducted to fill this gap. Methods: For this prospective, longitudinal study, the course of changes in adequate emotional preparedness for death and its associations with severe depressive symptoms and QOL were examined on 309 consecutive caregivers of terminally ill cancer patients by univariate and multivariate generalized estimating equation analyses, respectively. Results: Prevalence of adequate emotional preparedness for death was 57.2%, 61.3%, 54.4%, and 46.0% at 181-365, 91-180, 31-90, and 1-30 days before the patient's death, respectively, without significant changes as the patient's death approached. Adequate emotional preparedness for death was associated with caregivers' lower likelihood of severe depressive symptoms (adjusted odds ratio [95% CI]: 0.23 [0.16, 0.32], P < 0.001) but with their better QOL (adjusted β [95% CI]: 7.65 [6.38, 8.92], P < 0.001) in the patient's last year. Conclusions: Without active, effective clinical interventions to promote caregivers' emotional preparedness for death, they cannot automatically become more prepared for the patient's death over time. Adequate emotional preparedness for the patient's death benefits caregivers by its associations with a lower likelihood of depressive symptoms and better QOL. Supportive programs for caregivers of terminally ill cancer patients should focus on not only enhancing caregiving skills but also cultivating emotional preparedness for their relative's death to promote their psychological well-being and QOL.

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

Constructing a new role for family carers and volunteers providing care towards the end of life: an action research approach exploring a new model of hospice care

Objective: The objective of this study was to understand the conceptualisation and development of a novel way of providing end‐of‐life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. Methods: A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017–2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty‐six individual and eight follow‐up interviews, two group interviews and five discrete action cycles were completed. Findings: At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home‐like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the 'unknown' expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere. 

 

 

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

The Concerns and Experience of Decision-Making Regarding Do-Not-Resuscitate Orders Among Caregivers in Hospice Palliative Care

Background: A do-not-resuscitate (DNR) order is an important end-of-life decision. In Taiwan, family caregivers are also involved in this decision-making process. This study aimed to explore the concerns and experiences regarding DNR decisions among caregivers in Taiwan. Methods: Qualitative study was conducted. Convenience sampling was used, and 26 caregivers were recruited whose patients had a DNR order and had received hospice care or hospice home care. Semi-structured interviews were used for data collection, including the previous experiences of DNR discussions with the patients and medical staff and their concerns and difficulties in decision-making. The data analysis was based on the principle of thematic analysis. Findings: Four themes were identified: (1) Patients: The caregivers respected the patients' willingness and did not want to make them feel like "giving up." (2) Caregivers' self: They did not want to intensify the patients' suffering but sometimes found it emotionally difficult to accept death. (3) Other family members: They were concerned about the other family members' opinions on DNR orders, their blame, and their views on filial impiety. (4) Medical staff: The information and suggestions from the medical staff were foundational to their decision-making. The caregivers needed the health care professionals' supports to deal with the concerns from patients and other family members as well as their emotional reactions.

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

Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education

Background: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG. Objective: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group. Methods: A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos. Results: Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience. Conclusion: Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.

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

Comfort Needs of Cancer Family Caregivers in Outpatient Palliative Care

Background: Rapid expansion of outpatient palliative care has been fueled by the growing number of people living with cancer and other chronic illnesses whose symptoms are largely managed in the community rather than inpatient settings. Nurses and other palliative care professionals support seriously ill patients and their families, yet little research has specifically examined the needs of cancer family caregivers receiving services from outpatient palliative care teams. Methods: To address this gap in the knowledge base, researchers conducted a reflective thematic analysis of qualitative interviews conducted with 39 family caregivers, using Comfort Theory as a theoretical guide. Findings: Seven themes describing caregivers' comfort needs were identified, including the need to understand , need for self-efficacy , need to derive meaning , need for informal support , need for formal support , need for resources , and need for self-care. Conclusions: Findings have clear implications for palliative nursing, as they directly address cancer family caregivers' needs in 5 of the 8 domains of care delineated by the National Consensus Project for Quality Palliative Care's Clinical Practice Guidelines. Comprehensive, holistic nursing assessment is suggested to identify family caregivers' needs and plan for delivery of evidence-based interventions shown to decrease burden and improve quality of life.

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

Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

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

Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia‐Specific Advance Care Planning

Background/Objectives: Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia‐specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia‐specific ACP. Design Qualitative study with separate focus groups for patients and caregivers. Setting: Memory disorder clinics. Participants: Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. Measurements Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. Results: No participants had engaged in any written form of dementia‐specific planning. Barriers to dementia‐specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. Conclusions: Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia‐specific advance directive documents.

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

A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1

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

Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia

Background: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. Methods: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. Findings: Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.

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

Caring for patients with end‐stage renal disease during COVID‐19 lockdown: What (additional) challenges to family caregivers?

Introduction: Caring for a patient with end‐stage renal disease undergoing in‐centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID‐19, which might increase the care demands and burden of family caregivers. Aim: This study aimed to explore the subjective experiences of family caregivers of non‐COVID‐19 patients with end‐stage renal disease undergoing in‐centre haemodialysis during the COVID‐19 lockdown. Study design: A qualitative study was performed with a purposive sample. Methods: Semi‐structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in‐centre haemodialysis in April 2020. Findings Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. Discussion: The findings suggest that family caregivers of patients undergoing in‐centre haemodialysis have to manage several additional care responsibilities due to COVID‐19 lockdown. The dialysis team should consider the development of educational and supportive interventions to meet family caregivers’ needs, mitigate emotional distress, fears and concerns, and prevent caregiver burden during the COVID‐19 pandemic.

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

Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled 'Caring Ahead' to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the 'Caring Ahead' preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers' feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

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

Carer and staff perceptions of end-of-life care provision: case of a hospice-at-home service

Background: People requiring palliative care should have their needs met by services acting in accordance with their wishes. A hospice in the south of England provides such care via a 24/7 hospice at home service. This study aimed to establish how a nurse-led night service supported patients and family carers to remain at home and avoid hospital admissions. Methods: Semi-structured interviews were carried out with family carers (n=38) and hospice-at-home staff (n=9). Through night-time phone calls and visits, family carers felt supported by specialist hospice staff whereby only appropriate hospital admission was facilitated. Results: Staff provided mediation between family carer and other services enabling more integrated care and support to remain at home. Conclusions: A hospice-at-home night service can prevent unnecessary hospital admissions and meet patient wishes through specialist care at home.

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

Caregiver support and place of death among older adults

Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross‐sectional study of deceased older adults and last‐month‐of‐life (LML) caregivers. Setting: United States; all places of deaths. Participants: Three‐hundred and seventy‐five decedents and 267 LML caregivers. Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care‐related emotional difficulty). Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269–0.724) and more daughters (OR: 0.743 [95% CI: 0.575–0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623–10.323]). Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end‐of‐life caregivers might improve patient and caregiver experiences for home and hospital deaths.

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

Caregiver burden and associated factors amongst carers of women with advanced breast cancer attending a radiation oncology clinic in Nigeria

Background: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria. Aim: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer. Setting: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria. Methods: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained. Results: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78). Conclusion: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role. 

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

Caregiver Burden among Informal Caregivers in the Kerala Palliative Care Program: Development and Validation of the Achutha Menon Centre-Caregiver Burden Inventory

Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews. Content validity assessment, cognitive interviews, and a cross-sectional survey were used to develop and validate the instrument. The study was set within the primary palliative care program in Kerala, India. Subjects: Ten palliative care professionals and 10 caregivers were engaged for the content validity assessment and cognitive interviews, respectively. The cross-sectional survey was conducted among 221 (males = 21) family caregivers in Kollam district, Kerala. The Institutional Ethics Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum reviewed and cleared the study. Measurements: Underlying factors were identified by using principal axis factoring. The corresponding sub-scales and a composite scale were tested for internal consistency, construct validity, reproducibility, floor and ceiling effects, and interpretability. Results: Two factors that explained 29.5% of the variance were extracted. Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-Type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability (ρ = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India. 

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

Care Burden and Quality of Life in Family Caregivers of Palliative Care Patients

Objective: This research was conducted for the purpose of examining the care burden and quality of life in family caregivers of palliative care patients. Design: The research design was a descriptive correlational study conducted with the caregivers of 163 patients residing in palliative care units. Data were collected via a demographic survey, The Zarit Burden Interview (ZBI) and the World Health Organization Quality of Life Assessment (WHOQOL). Results: The results showed that there was a negative correlation between ZBI and WHOQOL scores. Further, there was a significant negative correlation between many subdimensions of the ZBI (general quality of life, general perception of health, being satisfied with daily life skills, home conditions, energy and self-satisfaction) and the WHOQOL. Quality of life thus appeared to be reduced in family members with a high level of care burden and that the quality of life of caregivers depends on the individual characteristics of the caregiver. Conclusions: Social workers, nurses and physicians should regularly assess the burden and quality of life of caregivers.

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

Bereaved Family More Likely to Report "Too Little" Care than "Too Much" Care at the End of Life

Background: An often-stated concern is that dying persons receive too much aggressive medical care. Objective: Examine next-of-kin perceptions of the amount of medical care received in the last month of life. Design: Mixed-methods study with 623 survey responses and in-depth interviews with a subsample of 17 respondents. Subjects: Nontraumatic deaths 18 years and older in San Francisco Bay area. Measure: The survey asked: "During the last month of your family member's life, did he or she receive too little, the right amount, or too much medical care?" Additionally, surveys examined 18 measures of quality of care in the last month of life, reporting concerns or unmet needs with staff communication, symptom management, emotional support, physician communication, treating the patient with dignity, respecting a person's culture, spiritual support, and providing timely help after hours. Results: Of the 623 survey respondents, 16.9% reported their loved one received "too little" care while only 1.4% reported "too much." Likelihood of reporting too little medical care did not differ by age, gender, or being insured by Medicaid only. Respondents who reported "too little" compared with those that stated the "right amount" reported higher unmet needs for symptom palliation, physician communication concerns, with other important opportunities to improve the quality of care. Among the 17 in-depth interviews of those indicating "too little" care on the structured survey, the predominant concern (n = 10) was inadequate symptom management. Conclusion: While the majority of respondents indicated their loved one received the right amount of medical care at the end of life, a notable minority (one in six) indicated that their loved one received too little care.

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

"At the End We Feel Forgotten": Needs, Concerns, and Advice from Blogs of Dementia Family Caregivers

Background: Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). Design: A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Results: Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Conclusions: Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.

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

Associations Between Hospice Care and Scary Family Caregiver Experiences

Context: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. Objectives: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. Methods: Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. Results: Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. Conclusion: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.

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

Association between direct interpersonal involvement with a dying family member and discussions regarding advance care planning among Japanese older adults

Aim: There is growing recognition of the need to hold advance care planning discussions. Older adults who have direct interpersonal involvement with dying family members might begin to consider their own end‐of‐life care. This study examined the associations between experiences of being with a dying family member and advance care planning discussions among Japanese older adults. Methods: This study examined data from a previous self‐administered questionnaire survey carried out among outpatients aged ≥65 years. All participants were visitors of a community hospital in Japan, with data being collected over a 1‐week period in July 2016. The main exposure was experiences of being with dying family members, while the outcome was advance care planning discussions with the family members and/or their physician. We analyzed the associations between experiences of being with dying family members and advance care planning discussions through log‐binomial regression models adjusted for possible sociodemographic confounders. Results: Of the 302 respondents included for analysis, 96 (32%) had experiences of being with dying family members, while 179 (59%) held advance care planning discussions. Respondents with said experiences were more likely to have discussions than those without experiences (fully adjusted prevalence ratio 1.31, 95% confidence interval 1.04–1.65). Subgroup analyses showed no significant interaction effects between experiences of being with dying family members and the covariates. Conclusions: Direct interpersonal involvement with dying family members might facilitate advance care planning discussions among Japanese older adults. Our results should help healthcare providers recognize individuals who are unlikely to have discussions. 

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

Association between direct interpersonal involvement with a dying family member and discussions regarding advance care planning among Japanese older adults

Aim: There is growing recognition of the need to hold advance care planning discussions. Older adults who have direct interpersonal involvement with dying family members might begin to consider their own end‐of‐life care. This study examined the associations between experiences of being with a dying family member and advance care planning discussions among Japanese older adults. Methods: This study examined data from a previous self‐administered questionnaire survey carried out among outpatients aged ≥65 years. All participants were visitors of a community hospital in Japan, with data being collected over a 1‐week period in July 2016. The main exposure was experiences of being with dying family members, while the outcome was advance care planning discussions with the family members and/or their physician. We analyzed the associations between experiences of being with dying family members and advance care planning discussions through log‐binomial regression models adjusted for possible sociodemographic confounders. Results: Of the 302 respondents included for analysis, 96 (32%) had experiences of being with dying family members, while 179 (59%) held advance care planning discussions. Respondents with said experiences were more likely to have discussions than those without experiences (fully adjusted prevalence ratio 1.31, 95% confidence interval 1.04–1.65). Subgroup analyses showed no significant interaction effects between experiences of being with dying family members and the covariates. Conclusions: Direct interpersonal involvement with dying family members might facilitate advance care planning discussions among Japanese older adults. Our results should help healthcare providers recognize individuals who are unlikely to have discussions. 

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

Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers

Background: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. Aim: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. Design: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. Setting/participants: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. Results: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. Conclusions: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.

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

Advance Care Planning in Pediatric Serious Illness: Centering in the Family Experience

The article presents a study which analyzed the effects of advanced care planning interventions like the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) on families' evaluation of their experiences in familial distress and caregiving. FACE-TC is recognized by the National Cancer Institute. Allso cited is the importance of pediatric palliative care in addressing the patients' and families' goals and values during serious illnesses.

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

Advance Care Planning for African American Caregivers of Relatives With Dementias: Cluster Randomized Controlled Trial

Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.

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

Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives

Background: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. Aim: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives' satisfaction with treatment and care. Design: Mixed-methods study, including a survey and focus group study. Setting/participants: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. Results: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients' and relatives' lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). Conclusions: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.

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

Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

Background: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods: Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results: While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions: ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

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

Activating Patients and Families to Improve Palliative Care: The Waiting Room Revolution

We need to support and educate palliative care specialists and generalist providers, especially family physicians, on how to integrate an early palliative care approach into care for those with a serious illness. However, there are very few care providers compared to the number of patients and caregivers in society. To increase access to palliative care at a population level, we need a waiting room revolution, one where patients and families shift from being passive to being active in shaping their experience with serious illness. A co-design approach with patients and families can help overcome barriers to accessing palliative care and improve the overall experience.

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

“Achieve the best while rushing against time": A grounded theory study on caring for low-income immigrant cancer patients at end of life

Background: Between 2000 and 2020, Europe experienced an annual net arrival of approximately 1.6 million immigrants per year. While having lower mortality rates, in the setting of severe diseases, immigrants bear a greater cancer-related burden due to linguistic and cultural barriers and socio-economic conditions. Professionals face a two-fold task: managing clinical conditions while considering the social, economic, cultural, and spiritual sphere of patients and their families. In this regard, little is known about the care provision to low-income immigrant cancer patients in real contexts. Aim: To investigate the perspective of professionals, family members, and stakeholders on the caring process of low-income immigrant cancer patients at the end of life. Design: A Constructivist Grounded Theory study. Setting/participants: The study, conducted at a Hospital in Northern Italy, involved 27 participants among health professionals, family caregivers, and other stakeholders who had recently accompanied immigrant cancer patients in their terminal phase of illness. Results: Findings evidenced that professionals feel they were not adequately trained to cope with immigrant cancer patients, nonetheless, they were highly committed in providing the best care they could, rushing against the (short) time the patients have left. Analyses evidenced four main categories: "providing and receiving hospitality," "understanding each other," "addressing diversity," and "around the patient," which we conceptualized under the core category "Achieve the best while rushing against time." Conclusions: The model reveals the activation of empathic and compassionate behavior by professionals. It evidences the need for empowering professionals with cultural competencies by employing interpreters and specific training programs.

Access source material through DOI
Original source (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