The following resources examine the impact of bereavement on carers.
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Background: Informal caregivers of critically ill patients in intensive care unit (ICUs) experience negative psychological sequelae that worsen after death. We synthesized outcomes reported from ICU bereavement interventions intended to improve informal caregivers’ ability to cope with grief.
Data sources: MEDLINE, EMBASE, CINAHL and PsycINFO from inception to October 2020.
Study selection: Randomized controlled trials (RCTs) of bereavement interventions to support informal caregivers of adult patients who died in ICU.
Data extraction: Two reviewers independently extracted data in duplicate. Narrative synthesis was conducted.
Data synthesis: Bereavement interventions were categorized according to the UK National Institute for Health and Clinical Excellence three-tiered model of bereavement support according to the level of need: (1) Universal information provided to all those bereaved; (2) Selected or targeted non-specialist support provided to those who are at-risk of developing complex needs; and/or (3) Professional specialist interventions provided to those with a high level of complex needs. Outcome measures were synthesized according to core outcomes established for evaluating bereavement support for adults who have lost other adults to illness.
Results: Three studies of ICU bereavement interventions from 31 ICUs across 26 hospitals were included. One trial examining the effect of family presence at brain death assessment integrated all three categories of support but did not report significant improvement in emotional or psychological distress. Two other trials assessed a condolence letter intervention, which did not decrease grief symptoms and may have increased symptoms of depression and post-traumatic stress disorder, and a storytelling intervention that found no significant improvements in anxiety, depression, post-traumatic stress, or complicated grief. Four of nine core bereavement outcomes were not assessed anytime in follow-up.
Conclusions: Currently available trial evidence is sparse and does not support the use of bereavement interventions for informal caregivers of critically ill patients who die in the ICU.
An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy. This qualitative study employed interpretive description to explore the way in which palliative care workers and welfare sector workers perceive and approach experiences and needs of bereaved carers receiving government income support or housing assistance in Western Sydney, an area associated with recognised socioeconomic disadvantage. A total of 21 palliative care workers within a public health service and welfare workers from two government social welfare services participated in in-depth interviews. Data were analysed using framework analysis. Participants highlighted social welfare policy and related interactions that may impact bereavement, potentially related to financial, housing and employment precariousness. Personal, interpersonal and structural factors perceived to shape the navigation of welfare needs were explored, alongside needed professional and structural changes envisioned by workers. With limited forms of capital, vulnerably positioned carers may encounter difficulties that heighten their precariousness in bereavement. Transactional organisational cultures alongside health and welfare agencies that function in a siloed manner appear to contribute to structural burden for carers, following death due to life-limiting illness. Palliative care and welfare workers also associated elements of their work with bereaved carers with their own experiences of helplessness, frustration and distress. Findings point to a need for the development of interagency strategies in addition to policy underpinned by more nuanced understandings of vulnerability in bereavement, post-caring.
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.
Background: Loss of a spouse is a frequent occurrence in later life. While most older adults successfully process this loss and will return to a normal life, about 10% of the individuals are unable to cope, and progress to prolonged grief (PG). PG, in turn, can result in mental and physical problems including poor sleep, cardiovascular problems, depression, and suicidal tendencies. Objective: LEAVES (optimizing the mentaL health and resiliencE of older Adults that haVe lost thEir spouSe via blended, online therapy) is an online bereavement program that will support the prevention and treatment of PG, so that elderly mourners can continue to lead an active, meaningful, and dignified life. LEAVES will cater to secondary end users (eg, family, informal caregivers) by reducing stress. Methods: LEAVES will help older adults to process the loss of a spouse in an online environment, which consists of (1) an existing online grief self-help program LIVIA, (2) the Before You Leave program that allows for storing personal memories, (3) a virtual agent platform, and (4) an accessible front-end design. LEAVES can detect persons at risk for complications, reveal negative trends in their emotional life, and act to counter such trends. The service relies on online support whenever possible but is blended with telephone or face-to-face counseling when necessary. Results: The project will take place between February 2020 and January 2023 and includes a real-life evaluation in which 315 end users will use the service across 3 countries (the Netherlands, Portugal, and Switzerland). The evaluation of LEAVES will focus on clinical effect, its business case, and technology acceptance. The results will pave the way for smooth integration into existing care paths and reimbursement schemes. Conclusions: The LEAVES service aims to soften the mourning process, prevents depression or social isolation, strengthens widow(er)s resilience and well-being, and quickens one's return to societal participation.
Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.
Aims: To test the feasibility of surveying bereaved next-of-kin in the South Island about their perceptions of end-of-life care for people over 18 years of age; to report results; and to identify issues for future research.; Method: The study used the VOICES (Views of Informal Carers Evaluation of Services) questionnaire from the UK, adapted for use in Aotearoa New Zealand. Identification of next-of-kin for all South Island deaths September-November 2017 was undertaken by a commercial firm specialising in such work. Addresses of next-of-kin were sought from the Electoral Roll, with 1,813 eligible people identified and 272 (15.0%) next-of-kin unable to be traced. Surveys were posted out once only, with options to complete by mail, online, by telephone or with a face-to-face interview.; Results: Of the 1,541 surveys distributed, 514 (33.4%) were completed. Results confirmed the suitability of the locally modified VOICES instrument and research process. The quality of care overall was rated most highly in hospice or own home, but only a minority were able to die in these settings. Nevertheless, relatives indicated that most people died 'in the best place'.; Conclusions: The VOICES questionnaire is acceptable to respondents and there are viable methods for seeking a population sample. Aspects of the questionnaire require modification before wider use. The information obtained can help district health boards, hospices other healthcare providers, and consumers in planning for end-of-life care.
BACKGROUND Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the PWD, with such caregiver grief postulated to affect the well‐being of the PWD‐caregiver dyads. However, the longitudinal effects of caregiver grief and the moderating effects of social services are not yet clear. OBJECTIVES We investigated the longitudinal effects of caregiver grief on caregiver depression, caregivers' quality of life (QoL), and caregivers' perceived positive aspects of caregiving (PAC); and examined potential effect modification of social service utilization (dementia care services, caregiver programs, and paid caregivers). DESIGN AND SETTING A prospective cohort study with three time points of assessments (at 0, 6, and 12 months). PARTICIPANTS Family caregivers of community‐dwelling PWD (n = 178). MEASUREMENTS At time point 1 (baseline), participants completed questionnaires that captured caregiver grief, burden, and social service utilization. Outcomes that were captured over time were: depression (time points 1–3), QoL (time point 2), and PAC (time point 3). Caregiver grief as well as interaction terms with social service utilization were included in Tobit regression to examine the association with outcomes. RESULTS: After accounting for the effect of caregiver burden, caregiver grief remained associated with depressive symptoms (P <.001) and poorer QoL (P <.001). However, compared with burden, grief contributed to larger magnitudes of the adverse effects. Grief, not burden, was associated with less PAC (P =.006 and P =.746, respectively). In contrast, burden, not grief, was associated with poorer physical health (P =.010 and P =.110, respectively). Dementia care services attenuated the effect of burden but not grief; caregiver programs did not affect burden but appeared to aggravate the effect of grief; and paid caregivers attenuated the effect of burden, and partially attenuated the effect of grief. CONCLUSION: Caregiver grief has an impact on dementia caregivers, likely through a distinct mechanism from that of caregiver burden. However, prevailing social services may not be sufficient to address grief, highlighting the need to further train care workers in this respect. J Am Geriatr Soc 68:2348–2353, 2020.
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).
Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD. Methods: A cross-sectional, self-report questionnaire survey was conducted between May and July 2014 on 20 acute hospitals, 133 inpatient palliative care units (PCUs), and 22 home hospice services. Questionnaires were sent to the bereaved family members identified by each institution. Results: Data were obtained from 814, 7,291, and 1,018 family members from acute hospitals, PCUs, and home hospice services, respectively. Significant associations were found between CG or MDD and all sleep condition symptoms (OR: 1.48-12.88; all p<0.0001) and between changes in alcohol intake (OR: 1.63-3.55; all p<0.0001). Limitations: The majority were family members who had lost a loved one to cancer in a PCU, the psychological health of nonresponders was unavailable, the results were based on self-report data, and no clinical assessment interviews were done; this could limit the generalizability of the findings. Conclusions: Overall, 14% and 17% of the respondents reported increased and decreased alcohol consumption, respectively, and 46-61% reported experiencing insomnia. Interestingly, both increase and decrease in alcohol intake after bereavement were risk factors of possible CG or MDD. These results suggest that assessing sleep conditions and alcohol consumption might help prevent severe psychological impairments in bereaved individuals.
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.
Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group. Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.
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.
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.
Objective: Grief reactions in bereaved caregivers of cancer patients have been identified individually as distinct prolonged grief disorder (PGD)—and major depressive disorder (MDD)—symptom trajectories, but no research has examined whether the patterns of change (trajectories) for PGD and MDD symptoms synchronize during bereavement. We conducted a secondary analysis study to investigate the construct distinctiveness of PGD and MDD by simultaneously identifying and examining similarities and differences between bereaved caregivers' PGD‐ and depressive‐symptom trajectories from immediately post‐loss through 2 years later. Methods: PGD and depressive symptoms were measured for 849 cancer patients' caregivers over their first 2 years of bereavement using 11 grief‐symptom items of the prolonged grief‐13 scale (PG‐11) and the center for epidemiologic studies‐depression (CES‐D) scale, respectively. PGD‐ and depressive‐symptom trajectories were identified using latent class growth analysis with continuous latent‐class indicators (total PG‐11 and CES‐D scores). Concordance of caregiver participants' membership in PGD‐ and depressive‐symptom trajectories was examined by a percentage and a kappa value. Results: Five distinct symptom trajectories were identified for both PGD and MDD, with four shared trajectories (endurance, transient‐reaction, resilience, and prolonged‐symptomatic) having different prevalence rankings. Nonetheless, unique trajectories were identified for PGD (potential recurrence) and depressive symptoms (chronically distressed), respectively. Concordance between membership in PGD‐ and depressive‐symptom trajectories was moderate (61.3%, kappa [95% CI]: 0.49 [0.44, 0.53]). Conclusion: PGD and MDD are related but distinct constructs indicated by the unique trajectories identified for each, different prevalence rankings for PGD‐ and depressive‐symptom trajectories, and moderate concordance between membership in PGD‐ and depressive‐symptom trajectories, respectively.
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.
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.
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.
When bereaved cancer caregivers have the opportunity to tell stories about their caregiving and bereavement journey, they are better able to make meaning of these experiences. Creating a space where they can share stories with other bereaved caregivers increases social validation, facilitates the meaning-making process, and reduces distress and risk for complicated grief. This study explored the feasibility and acceptability of an innovative storytelling intervention for bereaved family caregivers of cancer patients. Twenty-one participants engaged in the intervention, and eleven were interviewed about their experience. Results indicated study feasibility and intervention acceptability. Suggestions for future intervention were also provided.
Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement. Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach. Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“ Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers.
Background: Informal caregiver support programs offered by hospice organizations support the health and wellbeing of clients and caregivers. However, an understanding of the best practices for informal caregiver support programs currently undertaken across Canada remains unknown, particularly across the province of British Columbia. Aim: The aim of the present study was to describe what existing resources and supports are provided by hospice organizations for informal caregivers of persons who are nearing end of life or who are recently bereaved in British Columbia, Canada. Methods: In this descriptive study, two thirds of hospice organizations (N = 42/66; 26 urban, 16 rural) participated in a semi-structured telephone interview focused on informal caregiver support programs. All interviews were recorded, transcribed and analyzed thematically and descriptive statistics were employed. Findings: While no one-size-fit-all caregiver support program emerged as a gold standard across all hospice organizations, nearly two thirds (n = 26/42) offered one or more informal caregiver support programs. Four categories of caregiver support programs emerged from the data analysis, including companioning, bereavement and grief supports, education and service supports, and respite for caregivers. Conclusion: Caregiver support programs are a valuable service provided by some but not all hospice organizations across British Columbia, Canada. Future studies are needed to determine best methods for hospice organizations to formally assess caregivers’ needs and to determine the success and effectiveness of such programs in support of program expansion and evaluation.
Background: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.
Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving.
Objective: We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage. Method: Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data. Results: A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care. Conclusion: This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.
The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
Background: The experience of grief in family caregivers as they provide care for persons with dementia is often overlooked. The Marwit-Meuser-Caregiver-Grief-Inventory (MM-CGI) is one among the few scales that capture such experiences. In a recent study, MM-CGI was found to contain three subscales identifying dimensions of loss in caregivers - Personal-Sacrifice Burden (PSB), Heartfelt Sadness, Longing and Worry (HSLW), and Felt Isolation (FI). We aimed to evaluate the validity and utility of these dimensions in a multiethnic Asian population.; Methods: Family caregivers(n=394) completed MM-CGI and scales assessing caregiver burden, depression and gains. Internal-consistency reliability was examined using Cronbach's α, test-retest reliability using intraclass-correlation-coefficient, and construct validity using Pearson's correlation-coefficient. The utility of the MM-CGI dimensions was evaluated by comparing caregivers with high subscale scores across dementia stages and caregiving relationship.; Results: The three dimensions of MM-CGI exhibited adequate internal-consistency, test-retest reliability, construct validity, and known-group validity. PSB correlated most strongly with caregiver burden(r=0.78); HSLW with caregiver depression(r=0.75); and FI with caregiver burden and caregiver depression(r=0.60 respectively). Caregivers with high total grief scores tended to experience most difficulty with HSLW(90.8%), followed by PSB(75.4%) and FI(46.2%). The three dimensions also increased across the dementia stages, with FI higher in mild dementia, PSB higher in moderate dementia, and HSLW higher in severe dementia. Spousal caregivers experienced most difficulty in HSLW, whereas children caregivers experienced similar levels of difficulty across the dimensions.; Conclusions: The three dimensions of MM-CGI captured distinct aspects of caregiver grief in a multiethnic Asian population and would enable more individualized assessments and interventions for caregiver grief.
Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.
Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers' grief, quality of life and general health in relation to non-caregivers.; Aim: We aimed to determine how caregivers' grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes.; Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points - once pre-death and three times post-death (3-4 months, 6-7 months and 9-10 months).; Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements.; Results: There were significant differences between the caregivers' and comparisons' grief, general health and quality of life at pre-death, 3-4 months and 6-7 months post-death, but not at 9-10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6-7 and 9-10 months post-death.; Conclusion: It took 9-10 months for the caregivers' grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.
Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.
This article introduces a cartography tool to help social workers work with and support family caregivers. This tool aims to determine (1) which caregivers are likely to need additional support during bereavement and (2) what resources the caregiver has that care teams can rely on for decision-making and planning. The purpose of this article is to present a preliminary assessment of the cartography based on the feedback collected from potential users regarding the tool’s content and usage.
Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.
Background: Family caregivers carry heavy end-of-life (EOL) caregiving burdens, with their physical and psychological well-being threatened from caregiving to bereavement. However, caregiving burden has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear-and-tear vs relief models of bereavement. Objective/Methods Preloss and postloss variables associated with severe depressive symptoms and quality of life (QOL) for 201 terminally ill cancer patients' caregivers over their first 2 years of bereavement were simultaneously evaluated using multivariate hierarchical linear modeling. Severe depressive symptoms (Center for Epidemiological Studies Depression Scale score > 16) and QOL (physical and mental component summaries of the Medical Outcomes Study Short-Form Health Survey) were measured 1, 3, 6, 13, 18, and 24 months postloss. Results: Caregivers' likelihood of severe depressive symptoms and mental health-related QOL improved significantly from the second year and throughout the first 2 years of bereavement, respectively, whereas physical health-related QOL remained steady over time. Higher subjective caregiving burden and postloss concurrent greater social support and better QOL were associated with bereaved caregivers' lower likelihood of severe depressive symptoms. Bereaved caregivers' mental health-related QOL was facilitated and impeded by concurrent greater perceived social support and severe depressive symptoms, respectively. Conclusion: Severe depressive symptoms and mental health-related QOL improved substantially, whereas physical health-related QOL remained steady over the first 2 years of bereavement for cancer patients' caregivers. Timely referrals to adequate bereavement services should be promoted for at-risk bereaved caregivers, thus addressing their support needs and facilitating their bereavement adjustment.
Context The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated. Objectives The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers. Methods A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement. Results At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term. Conclusion For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.
Objective: After an extended period of caregiving, the death of a family member with dementia can provide a sense of relief to individuals because caregiving has ended and their loved one is no longer suffering. Little is known about predeath factors associated with feeling relieved after the death of a family member with dementia. This study examined 1) predeath factors associated with caregiver (CG) relief; and 2) whether CG relief is associated with postbereavement adjustment, namely complicated grief and depression symptoms. Methods: Participants were bereaved CGs aged 28-90 years old drawn from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) (N = 223) and Family Caregiver Transition Support (FaCTS) (N = 89) studies. In each sample, demographics were assessed at baseline, and CG relief was assessed at the first follow-up assessment after death. Each study administered a similar bereavement battery to CGs following the death of their care recipients (CRs). Results: CGs of late-stage dementia patients (FaCTS) reported more relief compared with CGs of early-to midstage dementia patients (REACH). CGs were more likely to experience relief if they were prepared for their CR's death and if they perceived their CR's death to be a relief to the CR. A multivariate regression model showed that greater CG relief was associated with less complicated grief postbereavement. CG relief was not significantly associated with depression symptoms. Conclusion: We show prospectively that the caregiving experience impacts feelings of relief, and that feeling relieved facilitates postbereavement adjustment by lessening symptoms of complicated grief.
Purpose A multi-centric study in Intensive Care units (ICU) and Emergency departments (ED) was designed to evaluate whether the provided communication and emotional support to the family in the context of organ donation met the international recommendations of the European Donor Hospital Education Program (EDHEP). Materials and methods Using a participatory approach and focus groups, a questionnaire was constructed: Donor Family questionnaire (DFQ). The questionnaire was distributed to 203 families. The data were analysed on item level. Results Sixty-four families participated, and 89% considered the communication as tactful. Only 24.1% had a separate conversation about passing and donation, which is the recommendation. 88.5% reported they could count on emotional support in the first phase on the ICU/ED. This dropped during the parting phase and the aftercare. The physician is perceived as the most active caregiver in the emotional support during the entire procedure. Conclusions The DFQ is a useful instrument to evaluate the donor procedure. The physician is important in the first phases of the donor procedure for the medical explanation. Other disciplines could be more involved in the following phases to assure enough emotional support, but this issue requires further exploration.
Objectives The Bereavement Risk Assessment Tool (BRAT) seems to be useful in identifying those who are likely to suffer from the more severe consequences of bereavement. To date, however, only a few studies have examined bereavement risk using the BRAT. This study investigated bereavement risk in family caregivers of patients with cancer using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). We also investigated the relationship of bereavement risk with psychological distress and resilience among caregivers to determine the validity of the BRAT-J. Methods We conducted family psychoeducation in the palliative care unit of Tohoku University Hospital with participants who were recruited in this study. Among the participants, 50 family caregivers provided their written informed consent and were included in this study. Participants were assessed using the BRAT-J and completed the Japanese version of the Kessler Psychological Distress Scale (K6) and the Tachikawa Resilience Scale (TRS). Results According to the BRAT-J, five individuals (10%) were in the high category of bereavement risk (level 4 or 5). We also found that family caregivers of patients experienced many different pressures, such as facing the unknown; their own work; and insufficient financial, practical, or physical resources. These issues are associated with various mental problems. Additionally, the level of bereavement risk was significantly correlated with K6 scores (ρ = 0.30, p = 0.032), and the TRS score (ρ = –0.44, p = 0.001). These correlations confirmed previous findings and that the BRAT-J can be an efficient screening tool for the bereavement risk of family caregivers of patients with cancer. Significance of results It appears that the BRAT-J is useful in predicting the likelihood of difficulties or complications in bereavement for family caregivers and could help to provide support with these issues when needed.
Patients with serious illness and their family caregivers face numerous ongoing psychological and social concerns and stressors throughout the disease trajectory. Common challenges relate to the need to manage the disease by making complex and often difficult medical decisions. In addition, the presence of psychological and psychiatric distress, including depression and anxiety, may significantly add to the overall symptom burden for the patient and family caregivers. These challenges negatively impact mood, cognitive function, interpersonal relationships, and medical decision making. If not recognized and adequately addressed, they can seriously undermine coping and resilience, eroding psychological well-being and quality of life.
When caring for a family member with dementia, continuous losses and predeath grief can adversely affect the caregivers’ physical and mental health. Interventions for caregivers should therefore also aim at coping with loss and managing predeath grief. It was the objective of the present study to describe sources of grief caregivers report during therapy and to investigate how therapists can support caregivers. Two caregivers who participated in a randomized controlled trial were selected for this case study. Both caregivers received an intervention based on the principles of cognitive-behavioral therapy with grief-focused content that consisted of 12 sessions within six months. Three therapy sessions per participant were transcribed, coded, and analyzed using qualitative content analysis. Results illustrate that both caregivers experienced a loss of companionship with their respective care recipient and ambiguous loss that resulted in intense grief that they found difficult to manage. Therapists responded by supporting the caregivers to acknowledge their losses and identify individual ways to cope with and accept loss and grief. Both caregivers reported higher well-being and an increased ability to manage their grief-related emotions after the therapy ended. The identified intervention strategies fit well into a theoretical framework for grief interventions for dementia caregivers, i.e. the dementia grief model.
Grieving is a normal reaction to loss; however, not everyone is able to recover from grief and adjust to a life after the loss. "Complicated grief" (CG) is a term used to describe intense and prolonged bereavement after the loss of a loved one that interferes with normal activities accompanied by destructive thoughts and behaviors. In practice and research, the concept of CG varies in definition and instruments used to measure. This concept analysis examines relevant research related to CG experienced by caregivers to provide a clear, comprehensive definition. Implications for nursing practice and research are explored.
Background: People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as 'devastating' for the person and their family. Aim: This study aimed to explore the meaning of supporting a loved one with MND to die. Methods: This study uses reflection and autobiographical story to connect with broader cultural, political and social meaning and understandings of dying. Findings: Four themes were identified relating to the end-of-life trajectory of MND. Loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying-facing it alone). Conclusion: Dying with MND is a complex phenomenon. When a person can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs the support from those acting as power of attorney to make their end of life their own, and they themselves need support to find meaning in their suffering. This autoethnographic reflection provides vicarious experiences for nurses and other healthcare professionals working with people with MND and similar conditions.
Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia—one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers’ social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other.
Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers--that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's selfcare or household activities--would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.
Objectives: To review the family caregivers' unmet needs in the long-term phase of survivorship to identify unique challenges faced by family caregivers.; Data Sources: Research-based articles and published reports.; Conclusion: Family caregivers diverge into three distinct groups in the long-term survivorship phase: those remaining in care, those whose patients have survived and where care is no longer needed, and those whose patients have died. Their primary unmet needs vary by the different caregivership trajectories.; Implications For Nursing Practice: Comprehensive understanding of family caregivers' unmet needs is required to develop family caregiver care plans in long-term survivorship.
Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression. Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression. Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III. Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes. Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used. Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief. Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.
Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved. Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process. Design: Mixed-methods cross-sectional survey. Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited. Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool. Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making. Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.
Objective: Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.; Method: Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.Result A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the "color" of death, social and professional support, the moment of death, and grief and loss. Significance of results The analysis showed that caregiving may positively or negatively influence the bereavement process.
The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.
The purposes of this article is to discuss the topic of family caregiver recovery and inspire further development of the concept to promote greater awareness of the process of caregiver recovery in order to guide healthcare professionals to better serve family caregivers.
The article offers information on the family caregivers who are individuals, such as family members, partners, friends, and neighbors, who take care of loved ones with functional, emotional, and/or cognitive limitations due to illness or injury. Topics include that family caregivers experience many of the same risks and challenges of caregiving that seem to extend into the transitional life phase of caregiver recovery such as family caregiving risks, compassion fatigue and relationships.
Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.
This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient's death. In total, 117 family caregivers completed all questionnaires. The participants' grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.
Introduction: In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.; Aim: The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.; Methods: The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.; Results: The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.; Conclusions: This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.
Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.
Objectives: A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG).; Methods: De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed.; Results: Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral.; Discussion: The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.
Objectives: Family caregivers suffer a high burden of emotional and psychological distress following the death of a loved one in the intensive care unit and often struggle to heal in the weeks following their loss. The purpose of this hermeneutic phenomenological study was to describe and interpret the experience of healing for family caregivers six weeks following the death of a loved one in the ICU.; Methods: Semi-structured telephone interviews were conducted with a purposive sample of twenty-four family caregivers six weeks following the death of their loved ones in the ICU. Qualitative analysis techniques were used to identify common themes central to the experience of healing across all interviews.; Results: Seven themes were interpreted from the data: searching for clarity from a time of uncertainty; riding an emotional rollercoaster; seeking peace in one's decisions; moving forward with each new day; taking comfort in the memories; valuing layers of support; and discovering life on one's own.; Conclusion: By identifying and gaining an understanding of healing following the death of a loved one in the ICU, nursing and other healthcare providers have an opportunity to promote healing and positively impact family caregiver's bereavement.
Objective To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). Design Cross-sectional survey study. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). Interventions Not applicable. Main Outcome Measures Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury item banks. Results While the initial exploratory and confirmatory factor analyses of the feelings of loss item pool (98 items) potentially supported a unidimensional set of items, further analysis indicated 2 different factors: Feelings of Loss-Self (43 items) and Feelings of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items were deleted due to item-response theory-based item misfit; the remaining 30 items had good overall model fit (comparative fit index [CFI]=0.96, Tucker-Lewis index [TLI]=.96, root mean squared error of approximation [RMSEA]=.10). For Feelings of Loss-Other, 1 additional item was deleted due to an associated high correlated error modification index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97, RMSEA=.095). The final item banks were developed to be administered as either a Computer Adaptive Test (CAT) or a short-form (SF). Clinical experts approved the content of the 6-item SFs of the 2 measures (3-week test-retest was r =.87 for Feelings of Loss-Self and r =.85 for Feelings of Loss-Person with TBI). Conclusions The findings from this study resulted in the development of 2 new PROs to assess feelings of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established and an SF was developed for ease of use in clinical situations. Additional research is needed to determine concurrent and predictive validity of these measures in the psychological treatment of those caring for persons with TBI. Highlights • Feelings of loss are common in caregivers of persons with traumatic brain injury. • Two new self-report measures of caregiver feelings of loss were developed. • These self-report measures can help identify feelings of entrapment in caregivers.
Purpose Is collaborative story production (CSP) a useful method to collaborate with bereaved families to record their reflections on the end of life circumstances and care of people of advanced age? The paper aims to discuss this issue. Design/methodology/approach Drawing from Te Pākeketanga, a bicultural study involving 58 bereaved Māori and non-Māori families on behalf of 52 older relatives, the authors describe the CSP method. Researchers and participants co-created personalised written stories about the older person and their end of life experiences, supported with photographs of family, friends and memorabilia. The authors aimed to uplift the status of the older person and their family by tangibly reflecting the significance and magnitude of what had been shared and to strengthen the research analysis.Findings CSP supported member checking, promoted a robust understanding of participants’ narratives and increased the trustworthiness of data and strengthened the Kaupapa Māori and social constructivist analysis. However, some participants experienced difficulty revisiting painful memories when reading their story. CSP took longer than anticipated, was labour intensive and required a highly skilled and resourced team to ensure participants benefitted. Originality/value Using the CSP method with a bicultural cohort of bereaved families who had provided care to someone over the age of 80 was very helpful in assisting the researchers to gather narrative information and present it back to participants in a story format for their comment and feedback. The method contributed a useful way to partner with bereaved family caregivers following the death of an older family member. The authors needed a way to record the participants’ narratives of the older person’s end of life circumstances and end of life care experiences. This was very important, particularly for grieving families and indigenous families who may have felt vulnerable engaging with research, and with the research processes. The approach provided a helpful and non-intrusive member-checking process. The unique bicultural study approach deliberately utilised the CSP method to assist the researchers to work safely with bereaved families as the participants reflected upon and explored not only the end of life circumstances of the older person, but they also focused on the “death” and their own bereavement experiences. CSP also provided a helpful member-checking method; the authors were working with highly sensitive information and wanted to ensure that the authors as researchers understood and interpreted the families’ narrative data correctly, according to their perspectives.
Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.; Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.; Participants: 44 bereaved carers, who had been identified by GP as 'main carer' of someone recently deceased (3-12 months), aged between 38 and 87 years old (mean= 67).; Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.; Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.; Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care 'work'. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.
Background: Cutaneous T‐cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. Objectives: To explore the experiences of bereaved family caregivers of patients with CTCL. Methods: Single, semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement. Results: Fifteen carers of 11 deceased patients participated. Experiences clustered under four themes: (1) complexity of care and medical intervention; (2) caregiver roles in advanced CTCL; (3) person‐centred vs. organization‐centred care in advanced CTCL and (4) knowing and not knowing: reflections on dying, death and bereavement. Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organizational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Sub‐themes within each theme provide more detail about caregiver experiences. Conclusions: Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organizational flexibility and of good communication between healthcare providers in advanced CTCL.
Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it). Relatives of 11 patients with CTCL who had died were interviewed, four months or more after the death. The themes from what they said are described. Family members gave vivid descriptions of how the illness changed the appearance of their relative. They spoke of how difficult it was to look after someone with very damaged skin. They described the many different things they had to do to care for their relative both in hospital and at home. Some patients had frequently been in and out of hospital. Some caregivers expected them to come home each time and so had not felt prepared when their relative died. Several caregivers described how upsetting it was to see how illness affected their relative before they died. The authors say that family caregivers should be seen as part of the care team looking after the patient. They recommend that carers' needs for practical and emotional support and information should be considered during each patient's illness. Support for carers should also be offered following the death of their relative.
Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced.
Alzheimer's disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings. The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer's disease and related dementias caregivers. This review identified five critical gaps in the existing evidence: (a) a lack of ethnic and gender diversity among caregivers studied, (b) limited use of valid instruments to study dementia caregiver grief and bereavement, (c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care, (d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement, and (e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.
Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. Although such experience of caregiver grief is measurable, available scales (such as the Marwit–Meuser Caregiver Grief Inventory, MM-CGI) are lengthy and have overlaps with other caregiving constructs. We developed a briefer scale that captures the essence of caregiver grief—with comparable psychometric properties and total score to MM-CGI, as well as less overlap with other caregiving constructs. Family caregivers of community-dwelling PWD (N = 394) completed questionnaires containing MM-CGI and other caregiving scales. Initially, we split the study samples into two —the derivation sample (n = 179) was used to develop a brief scale that best predicts MM-CGI (using the best-subset approach with tenfold cross-validation), whereas the validation sample (n = 215) verified its actual performance in predicting MM-CGI. Thereafter, we evaluated the derived scale in its reliability and validity, and mapped its scores to MM-CGI using the equipercentile equating method.We derived a 6-item scale, which explained 84.1% of the variability in MM-CGI and had area under the receiver operating characteristic curve of .96 in discriminating high caregiver grief (95% CI: .94–.99). It had single dimension in confirmatory factor analysis (comparative fit index = .98; Tucker–Lewis index = .97) and maintained good psychometric properties similar to those of MM-CGI, while showing lower correlation with caregiver burden and depression. It also had scores that could be mapped to MM-CGI with reasonable precision. We developed the first brief scale with less than 10 items that can conveniently and accurately measure caregiver grief, which opens the way for grief-related interventions in clinical care. Notably, this 6-item scale was developed using rigorous methods and demonstrated consistent evidence of capturing the essence of caregiver grief.
Objectives: Pre-death grief plays a significant role in dementia caregiving, and has adverse impacts on caregivers. It was the purpose of the present study to examine whether a cognitive-behavioural intervention including a grief intervention module could increase caregivers’ coping with pre-death grief and whether these effects could be maintained as of a six-month follow-up assessment. Method: In a randomized-controlled trial examining the effectiveness of a cognitive-behavioural intervention, 273 caregivers were allocated to either an intervention or control group. Intervention group participants received 12 therapy sessions over six months; all participants completed a measure of pre-death grief. The analysis was conducted using latent change models. In the first model, study group was included as a predictor of change in pre-death grief; subsequent models also included care situation and sociodemographic variables. Results: The burden due to pre-death grief was reduced for intervention but not control group participants at the time of the six-month follow-up assessment (Cohen's d = −0.361). When controlling for changes in the care situation and sociodemographic variables, the treatment effect was also found in the assessment completed post intervention (Cohen's d = −0.248). Conclusion: Results indicate that a cognitive-behavioural intervention including grief-specific strategies can successfully foster caregivers’ coping with loss and reduce burden of pre-death grief.
Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. Aim: The authors compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’. Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.
Purpose: The purpose of this study is to explore the grief/bereavement process of Alzheimer's Disease and Related Dementias (ADRD) caregivers following death of a family member in long-term care (LTC) and develop a theoretical model of this phenomenon based upon in-depth individual interviews. There is limited evidence examining ADRD caregiver grief and bereavement following family member death in LTC settings. Grounded Theory methodology has not been utilized to explore this phenomenon. Background: ADRD is estimated to be the 6th leading cause of death in the United States. Most individuals with ADRD die in LTC settings, where grief and bereavement support to surviving family members is virtually non-existent. Twenty-percent of these caregivers experience prolonged and/or exaggerated grief reactions that may impair their physical/mental health. Method: A Grounded Theory design was used in this study. Participants were caregivers of a family member with ADRD who died in a LTC setting, recruited via Internet-based websites and caregiver forums. The interview guide explored recall of end-of-life grief and bereavement and the impact of LTC placement. Audio-taped individual interviews were conducted via Internet-based video-conferencing or telephone. Interviews were transcribed verbatim and entered into DeDoose© (qualitative data management software). Grounded theory methods were used to analyze data, formulate theoretical assumptions, and develop a theoretical model. Constant comparative analysis was used to interpret the findings and determine data saturation. Rigor was ensured through peer debriefing, audit trails, and expert reviews of the proposed model. Results: Participants included adult children/grandchildren (n=16) and spouse (n=1) ranging in age from 30 to 77 years (M=56.94, SD=5.36). The mean time between death and the interview was 2.98 years (SD=2.22). The emerging model identified is comprised of 3 interdependent components of bereavement (behavioral, cognitive, and emotional). The following factors related to LTC placement were identified as facilitators or barriers to caregiver grief/bereavement: relationships/support with staff, death rituals, end-of-life care (hospice, end-of-life suffering), frequent deaths of other LTC residents, staffing-shortages, and length of time in LTC. Conclusions: Findings from this study can be used to develop bereavement interventions for ADRD caregivers whose family members die in LTC.
The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (α > 0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.
Carers have a vital role in end of life care in all settings. They are essential in enabling people to live at home at the end of their lives. Carers give and receive care, and have a range of support needs related to this complex role. This article explores the context of caring at the end of life and considers the experience of carers, in particular those who have a non-professional and unpaid relationship with someone who is at the end of life, and the support they require.
Background It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home. Method Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis. Results Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief (2) Parenting the parent (3) Seeking support (4) Death, dying and life after death. Conclusion Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment.
Context Family caregivers of individuals with serious illness who undergo intensive life-sustaining medical procedures at the end of life may be at risk of negative consequences including depression. Objectives The objective of this study was to determine the association between patients' use of life-sustaining procedures at the end of life and depressive symptoms in their surviving spouses. Methods We used data from the Health and Retirement Study, a longitudinal survey of U.S. residents, linked to Medicare claims data. We included married Medicare beneficiaries aged 65 years and older who died between 2000 and 2011 (n = 1258) and their surviving spouses. The use of life-sustaining procedures (i.e., intubation/mechanical ventilation, tracheostomy, gastrostomy tube insertion, enteral/parenteral nutrition, and cardiopulmonary resuscitation) in the last month of life was measured via claims data. Using propensity score matching, we compared change in depressive symptoms of surviving spouses. Results Eighteen percent of decedents underwent one or more life-sustaining procedures in the last month of life. Those whose spouses underwent life-sustaining procedures had a 0.32-point increase in depressive symptoms after death (scale range = 0-8) and a greater likelihood of clinically significant depression (odds ratio = 1.51) compared with a matched sample of spouses of those who did not have procedures (P < 0.05). Conclusion Surviving spouses of those who undergo intensive life-sustaining procedures at the end of life experience a greater magnitude of increase in depressive symptoms than those whose spouses do not undergo such procedures. Further study of the circumstances and decision making surrounding these procedures is needed to understand their relationship with survivors' negative mental health consequences and how best to provide appropriate support.
Increasing attention is being paid to specific difficulties experienced by bereaved family caregivers (FCs). Limited capacity within health and social care structures results in high intensity of informal caregiving. The focus of recent research is the identification of specific predictors of adverse FC outcomes, in order to identify those FCs who will benefit most from intervention and support. Research is challenged by multiple influencing and confounding variables. This study aimed to evaluate factors of care associated with higher grief intensity in bereaved adult–child (AC‐FCs) and spousal FCs (S‐FCs). Data from the Qualycare study, a mortality follow‐back study of bereaved FCs of patients who died of cancer, was analyzed. Four hundred eighty‐four patient–FC dyads were included: 246 AC‐FCs and 238 S‐FCs. S‐FCs received more formal (SPC) (p = 0.026), and AC‐FCs more informal (p < 0.001), support. AC‐FCs were more likely to continue to work while caregiving (p < 0.001). Patients with AC‐FCs were more likely to spend time in and die in a nursing home (p < 0.001). Higher grief intensity was associated with higher caregiving intensity (p < 0.001), as well as other factors. AC‐FCs whose relative died in NH experienced significantly lower grief intensity (p < 0.001). Intensity of caregiving predicted 11.6% of variance in grief intensity for AC‐FCs compared to 0.5% for S‐FCs. The ‘relief model’ of bereavement is relevant for AC‐FCs. The support needs of AC‐FCs and S‐FCs differ. AC‐FCs should be targeted for practical supports and interventions, in order to support home‐death, if desired by patient and FC, and optimize bereavement outcomes.
This prospective study investigates informal care networks and their impact on hospice outcomes. Primary caregivers (N = 47) were the main source of data from 2 time points: within a week of enrollment in hospice and bereavement. Data were also collected from 42 secondary caregivers. Intraclass correlation coefficients (ICCs) determined correspondence between primary and secondary caregivers regarding informal care network size. Correlations were used to test associations between variables. Nonparametric paired sample tests were used to analyze change in anger and guilt. The ICC found poor correspondence (-0.13) between primary and secondary caregivers' network descriptions. Correlational analyses found a strong/moderate negative association between quality of dying (QOD) and grief ( r = -0.605, P < .05). Study participants reported increased anger (0.4, P < .05, range 1-5) and guilt (0.4, P < .05, range 1-5), particularly among caregivers with high levels of support. Findings suggest that improving QOD may facilitate postdeath coping for caregivers.
Background: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders.; Aim: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers' retrospective ratings of the quality of dying and death (QoDD) of their loved ones.; Design: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-Angehörige (QoDD-D-Ang) during the fourth week following the patient's death at the earliest. Depressive and panic disorders were assessed via the Patient Health Questionnaire (PHQ). Group comparisons (χ2, t test; significance level P < .05) analyzed whether informal caregivers with depression or panic disorders and those without such disorders differ in their estimates.; Results: A total of 226 informal caregivers participated between August 2012 and December 2013. The mean age of participants was 55.5 years; 61.1% were female. The PHQ of 221 participants resulted in 8.6% with major disorders, 13.6% with other depressive syndromes, and 77.8% without depressive disorders. In this secondary data analysis here, there was no difference between female and male participants concerning the incidence of depression ( P = .519, χ2). Two participants screened positive for both panic and major depressive disorders. Both groups presented no significant differences in the mean total QoDD-D-Ang scores ( P = .343).; Conclusion: Informal caregivers' estimates on the QoDD-D-Ang of their significant others do not interfere with mental disorders. Therefore, bereaved informal caregivers are able to participate in the PC research after a few weeks following the loss of a loved one.
Background: Prolonged grief disorder (PGD) and depression are recognized as distinct emotional-distress disorders for bereaved family caregivers. However, this distinction has been mostly validated in cross-sectional studies, neglecting the dynamic characteristics of bereaved caregivers' emotional distress. Objective: To validate the distinction between symptoms of PGD and depression across the first bereavement year for family caregivers of terminally ill cancer patients. Methods: In this descriptive, longitudinal study of 394 bereaved Taiwanese family caregivers, we measured symptoms of PGD and depression by the Prolonged Grief-13 and Center for Epidemiologic Studies Depression (CES-D) scales at 6 and 13 months postloss, respectively. Agreement between cases of PGD and severe depressive symptoms (CES-D score ≥ 16) was analyzed by Cohen's kappa. Structural distinctiveness was longitudinally examined using confirmatory bifactor modeling. Results: Agreement was poor between cases of PGD and severe depressive symptoms at 6 and 13 months postloss (kappa = .16 [confidence interval = .09, .22] and .12 [confidence interval = .03, .19], respectively). Symptoms of PGD and depression shared a general factor, but were distinct as shown by their significant specific factor loadings at 6 and 13 months postloss. Confirmatory bifactor models showed structural invariance (confirmatory fit index difference < .01 and χ2 difference P > .05) between 6 and 13 months postloss. Conclusion: Symptoms of PGD and depression were confirmed as distinct across the first year of bereavement. Health care professionals should recognize early in bereavement that symptoms of PGD and depression are distinct, identify high-risk groups, and provide care tailored to caregivers' unique needs to facilitate recovery from bereavement-related emotional-distress disorders.
Objective: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services. Methods: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving. Grounded theory guided all aspects of the study. Results: Sixty-one bereaved caregivers (30 intervention, 31 control) were interviewed, including spouses (33), adult children (19), and other family (9). There were no differences in themes between control and intervention groups. The core category of Taking charge encompassed caregivers' assumption of active roles in care, often in the face of inadequate formal support. There were 4 interrelated subcategories: (1) Navigating the system-navigating the complexities of the home care system to access resources and supports; (2) Engaging with professional caregivers-interacting with visiting personnel to advocate for consistency and quality of care; (3) Preparing for death-seeking out information about what to expect at the end of life; and (4) Managing after death-managing multiple administrative responsibilities in the emotionally charged period following death. Conclusions: Caregivers were often thrust into assuming control in order to compensate for deficiencies in formal palliative home care services. Policies, quality indicators, and guidelines are needed to ensure the provision of comprehensive, interdisciplinary home palliative care.
Background: Bereaved families endure tremendous grief. However, few studies have longitudinally investigated caregivers' bereavement grief for more than one year postloss and none is from family-oriented Asian countries. Objectives: We explored longitudinal changes in and modifiable predictors of severe depressive symptoms for Taiwanese family caregivers of terminally ill cancer patients over the first two years postloss. Design: For this descriptive, longitudinal study, severe depressive symptoms (Center for Epidemiological Studies Depression Scale score ≥16) were measured 1, 3, 6, 13, 18, and 24 months postloss. To identify modifiable factors (preloss depressive symptom levels, subjective caregiving burden, objective caregiving load, preparedness for patient death, and postloss social support) associated with postloss severe depressive symptoms, we used multivariate logistic regression modeling with the generalized estimating equation. Setting/Participants: Bereaved caregivers ( N = 285) were recruited by convenience from a medical center in northern Taiwan. Results: Bereaved family caregivers' prevalence of severe depressive symptoms peaked one month postloss (73.3%) and significantly decreased to 15.2% 24 months after the patient's death. After adjusting for confounders, bereaved caregivers were more likely to have severe depressive symptoms if they had heavy objective caregiving load and higher preloss depressive symptom levels. However, their likelihood of severe depressive symptoms was buffered by being better prepared for the patients' death and having greater social support. Conclusions: Bereaved family caregivers' severe depressive symptoms decreased significantly over the first two years postloss. Healthcare professionals should appropriately assess at-risk bereaved caregivers when patients are still alive and provide effective interventions to facilitate caregivers' return to normal life.
Background: A substantial number of family caregivers go through bereavement because of cancer, but little is known about the bereaved caregivers' long-term adjustment. This study aimed to document levels of bereavement outcomes (prolonged grief symptoms, intense emotional reaction to the loss, depressive symptoms, and life satisfaction) among family cancer caregivers 3-5 years post-loss and to investigate how self-rated preparedness for the patient's death predicted those bereavement outcomes. Methods: Family members participated in a nationwide survey for cancer caregivers 2 years after the relative's diagnosis (T1). Of those, 109 were identified as bereaved by 5 years post-diagnosis (T2). Of those, 88 continued to participate at 8-year follow-up (T3) and provided valid data for the study variables. Caregivers' distress risk factors were measured at T1, satisfaction with palliative care and preparedness for the death of the patient at T2, and time since death of the patient at T2 or T3. Results: Substantial numbers of family members (18% to 48%) displayed heightened levels of bereavement-related psychological distress years after the loss. Hierarchical general linear modeling revealed that perceived preparedness for the death of the patient concurrently and prospectively predicted better adjustment to bereavement, independent of contributions of other factors studied. Conclusions: Findings underscore the high prevalence of long-lasting bereavement-related distress among family cancer caregivers and the role of preparedness for the relative's death in the level of that distress. Findings suggest that psychosocial programs among caregivers focus on not only caregiving skills per se but also preparedness for the death of the patient.
Background: There are few studies on bereaved caregiver's perceptions of physician behavior toward death pronouncement. Although previous research indicates that most caregivers are satisfied with physician behavior toward death pronouncement at home hospices, bereaved caregiver's perceptions of death pronouncement in palliative care units (PCUs) have not been investigated. Objective: The aim was to examine bereaved caregiver's perceptions of physician behavior toward death pronouncement in PCUs. Design and Methods: This was a cross-sectional questionnaire survey of bereaved caregivers who had lost a family member in a PCU. Measures were based on a previous study to assess bereaved caregiver's evaluations of physician behavior toward death pronouncement. Results: Of 861 questionnaires sent to bereaved caregivers, 480 responses were analyzed. Overall, 86% of bereaved caregivers were satisfied with physician behavior toward death pronouncement. Logistic regression analysis revealed three predictors of caregiver satisfaction: "Polite behavior" (odds ratio [OR]: 0.12; 95% confidence intervals [CI]: 0.03-0.46; p < 0.01), "Physician introduced himself/herself to family" (OR: 0.3; 95% CI: 0.1-0.8; p = 0.02) and "Physician confirmed death automatically or routinely" (OR: 11.6; 95% CI: 4.7-28.4; p < 0.01). Caregivers whose family member's death was confirmed by the primarily responsible physician were significantly more satisfied than those whose family member's death was confirmed by an unfamiliar physician. Conclusions: Most caregivers who lost family members in PCUs were satisfied by the physician's behavior toward death pronouncement. Politeness was one of the most important factors associated with caregiver satisfaction.
We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses.
Context: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes. Objectives: The objective was to explore family caregivers' preparations for death. Methods: A total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques. Results: Analysis yielded two overarching themes: Here and Now centered on the caregivers' focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the Here/After described the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (Here) and worries and plans for the future (After). Conclusion: This exploratory study is the first to focus solely on family caregivers' experiences of preparing for a death. The caregivers described the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The caregivers in the present study were cognitively prepared, some were behaviorally prepared, but emotional preparedness was challenging. Services should not assume that all family caregivers are well-prepared for the death. Caregivers would likely benefit from the assessment and promotion of their death preparedness.
Objective: Severe grief symptoms in family caregivers during end-of-life cancer trajectories are associated with complicated grief and depression after the loss. Nevertheless, severe grief symptoms during end-of-life caregiving in caregivers to cancer patients have been scarcely studied. We aimed to explore associations between severe preloss grief symptoms in caregivers and modifiable factors such as depressive symptoms, caregiver burden, preparedness for death, and end-of-life communication.; Methods: We conducted a population-based prospective study of caregivers to 9512 patients registered with drug reimbursement due to terminal illness, and 3635 caregivers responded. Of these, 2865 caregivers to cancer patients completed a preloss grief scale (Prolonged Grief 13, preloss version). Associations with factors measured during end-of-life caregiving were analyzed using logistic regression.; Results: Severe preloss grief symptoms were reported by 432 caregivers (15.2%). These symptoms were associated with depressive symptoms (adjusted odds ratio [OR] = 12.4; 95% CI, 9.5-16.3), high caregiver burden (adjusted OR = 8.3; 95% CI, 6.3-11.1), low preparedness for death (adjusted OR = 3.3; 95% CI, 2.5-4.4), low level of communication about dying (adjusted OR = 3.2; 95% CI, 2.2-4.4), and "too much" prognostic information (adjusted OR = 2.8; 95%, 1.7-4.6).; Conclusions: Severe preloss grief symptoms were significantly associated with distress, low preparedness, and little communication during caregiving. Thus, severe preloss grief symptoms may be a key indicator for complications in caregivers of cancer patients in an end-of-life trajectory. Targeted interventions are needed to support family caregivers with severe preloss grief symptoms. Development of preloss grief assessment tools and interventions should be a priority target in future research.; Copyright © 2017 John Wiley & Sons, Ltd.
Purpose: The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementia-related diagnosis (a) define preparedness and (b) perceive its value.; Design and Methods: Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data.; Results: Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your "house in order"; (iv) saying "what you need to say"; and (v) giving "permission" to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared.; Implications: The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts.; © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: email@example.com.
Despite a significant growth in the number older former family carers, they remain largely invisible in carer-related research and literature. To begin to address this deficit, a four-stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes - the concept of 'older former carer', the legacies of caring, influences on the legacies of caring, conceptualising post-caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health-related legacies older former carers' experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub-groups, such as carers of relatives admitted to a care home, than others. Methodology-related weaknesses include small sample sizes and a focus on a single, often condition-specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post-caring tends to be viewed as one of the final temporal 'stages' of the carer's 'care-giving career', a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer - namely formerality - as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.
Background: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. Aim: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. Design: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers (n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts (n = 30) where narrative analysis was undertaken. Setting/participants: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants (n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. Results: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. Conclusion: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries
Purpose: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement.; Methods: This qualitative exploratory study was composed of individual semistructured telephone interviews with bereaved caregivers (n = 8) to patients with high-grade glioma who deceased during participation in the mixed-methods Neuro-oncological Rehabilitation study. A thematic analysis was conducted following Braun and Clarke's guidelines.; Results: Four main themes were identified concerning the bereavement experience: (1) late-stage caregiving is comprehensive and taxing, (2) releasing the responsibility of the primary caregiving role, (3) feelings of grief and relief, and (4) suggestions for clinical practice.; Conclusion: Late-stage caregiving is a difficult and challenging experience at the end of an already burdening treatment trajectory. Caregivers prefer to actively share responsibility and practical tasks with professionals, family, and friends. The bereaved caregivers' key areas of concern indicate the need for additional research in advance care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations
Context: The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. Objectives: This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. Method: All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. Results: The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P < 0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). Conclusions: The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death.
Anticipatory mourning is a phenomenon that has received limited attention. This study is a retrospective, qualitative study of caregivers' perception of this process. Twenty-two participants who had received services from Hospice were interviewed, and themes were identified that elucidate the essence of this phenomenon. Participants reveal what was helpful for them, thus providing insight into potential interventions to support care at the end of life.
Background : Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful.
Methods : In a population survey, a respondent-defined question was asked regarding ‘additional spiritual support’ that would have been helpful if someone ‘close to them had died’ an expected death in the previous five years. Data (socio-demographic [respondent]); clinical [deceased]) directly standardized to the whole population were analysed.
Results : There were 14,902 participants in this study (71.6% participation rate), of whom 31% (4665) experienced such a death and 1084 (23.2%) provided active hands-on (day-to-day or intermittent) care. Fifty-one of the 1084 (4.7%) active caregivers identified that additional spiritual support would have been helpful. The predictors in a regression analysis were: other domains where additional support would have been helpful (OR 1.69; 95% CI 1.46–1.94; p < 0.001); and being female (OR 3.23; 95% CI 1.23 to 8.33; p = 0.017). ‘Additional spiritual support being helpful’ was strongly associated with higher rates where additional support in other domains would also have been helpful in: all bereaved people (2.7 vs 0.6; p < 0.0001); and in active caregivers (3.7 vs 0.8; p < 0.0001).
Conclusion : People who identify that additional spiritual support would have been helpful have specific demographic characteristics. There is also a strong association with the likelihood of identifying that a number of other additional supports would have been helpful. Clinically, the need for additional spiritual support should open a conversation about other areas where the need for further support may be identified.
Background: Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain.
Aim: Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital.
Design: Uncontrolled before–after intervention cluster trial.
Settings/participants: The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2–4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient’s death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0–100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting).
Results: An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6–30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6–32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3–28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2–24.3; p = 0.007). No significant improvement in symptom’ control was observed.
Conclusions: These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.
Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement.
Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process of bereavement. The transcripts were analysed using interpretative phenomenological analysis (IPA).
Results: A total of five superordinate themes were identified: (i) Factors making the experience difficult for carers, (ii) Factors that helped carers, (iii) Carers' perspectives on the responses of people with intellectual disabilities, (iv) Approaches to supporting people with intellectual disabilities and (v) Carers' perspectives on support.
Conclusions: Supporting people with intellectual disabilities through bereavement is an emotionally demanding task for carers. The support needs of carers need to be acknowledged and addressed in order to ensure that adequate support is available to people with intellectual disabilities following bereavement.
Background: Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient.
Objective: This study seeks to understand the experiences and needs of family carers of people with severe COPD.
Design: Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically.
Results: The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services.
Conclusion: The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.
Meeting family carers who recount their experiences of being on the receiving end of health and social care provides a 'real life' context in which undergraduate students from different professions can explore together and learn about interprofessional care and teamwork. This paper draws on data from a three-month in-depth evaluation of palliative care workshops in which medical, nursing, social work and rehabilitation therapy students interview family carers who are caring for someone with a terminal illness or who have recently been bereaved. The evaluation showed that students responded positively to 'real world' learning and coped well when carers were upset or recounted distressing incidents. Meeting the carer had a profound impact on the students- to the extent that some said they were 'changed' by the experience and felt it would significantly influence their professional behaviour. Hearing the carer's story also allowed them to pinpoint new and significant insights into their own profession and into healthcare provision generally. Family carers' views of their experience of the workshops were also sought and they too reported benefits from meeting the students. They found the experience cathartic and therapeutic and were both surprised and impressed by the maturity of the students who were able to respond to their distress. The paper also discusses the practicalities involved in recruiting the carers, issues of preparation and debriefing and lessons which will be useful to others who may wish to involve family carers in education.
Background and objectives: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.
Methods: A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.
Results: Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.
Conclusions: This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.
Aims and objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.
Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources.
Design: A qualitative study.
Methods: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis.
Results: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life.
Conclusions: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments.
Relevance to clinical practice: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.
Aim. This paper is a report of a study conducted to explore the determinants of satisfaction with health and social care services in the last 3 months and 3 days of life as reported by bereaved relatives of those who died from a stroke in an institutional setting.
Background. There is limited research about how best to meet the needs of those who die from stroke. A thorough understanding of the determinants of satisfaction with end of life care is crucial for effective service provision to increase awareness of the needs of dying patients.
Methods. During a six-month period in 2003, a population-based survey of bereaved relatives of patients after stroke was conducted using a stroke-specific version of the Views of Informal Carers Evaluation of Services postal questionnaire (183 informants, response rate 37%). The sub-sample included those informants who reported that the deceased person had died in an institutional setting (91%, n = 165). The analysis was divided into two phases: univariate (Pearson chi-square test) and multivariate phase (logistic regression).
Results. Logistic regressions showed that discussing any worries about the treatment of the deceased person and feeling that the doctors and nurses knew enough about their condition were predictors of satisfaction with doctors and nurses in the last 3 months of life. Meeting the personal care needs of the deceased person, being involved in decisions and feeling that the deceased person died in the right place were predictors of satisfaction with care in the last 3 days of life.
Conclusion. End of life care needs to address the individual needs of patients who die from stroke and those close to them. This study shows that individualised end of life care increases satisfaction and, although the data reported in this paper reflect care in 2003, there is no more recent evidence that contradicts this important overall finding.
As most terminal and palliative care is in the community, general practitioners (GPs) have an important role to play. This study presents bereaved carers' views of the palliative care provided by GPs. It suggests that symptom control may not be optimal.
Hospice nurses are finding new ways to care for bereaved people, reports Jennifer Trueland
Bereavement care is a vital but under-funded part of palliative care services, and there is growing evidence that people who have lost a loved one are at increased risk of serious illness. The Hospice of St Francis in Berkhamsted is providing innovative care for families of patients before and after death. ‘Life-changing’ initiatives include cookery classes and pony rides.
A statistical bulletin presenting bereaved peoples’ views on the quality of care provided to a friend or relative in the last three months of life. Overall quality of care is not perceived to have changed significantly between 2011, 2012 and 2013 in England but was rated significantly lower for people who died in a hospital, compared to people dying at home, in a hospice or care home. For those dying at home, the quality of coordination of care was rated significantly lower in 2013 compared to 2012. The dignity and respect for patients shown by hospital nurses and hospice nurses has increased between 2011 and 2013. Pain is relieved most effectively in the hospice setting and least effectively at home. The bulletin also indicates that only half of people who express a preference to die at home, actually die at home.
In its latest report on palliative care, the health committee of the House of Commons recorded the Department of Health's admission that the lack of palliative care for patients without cancer was the greatest inequity of all.1 In the United Kingdom, people die in hospices almost solely from cancer, although it accounts for only 25% of all deaths.1 w1 Yet patients dying from dementia have been shown to have healthcare needs comparable to those of cancer patients.2 The palliative care approach provides appropriate control of symptoms, emphasises overall quality of life, takes a holistic approach, involves the patient and the family in decisions, and fosters good supportive communication between all concerned.w2 Hence, it equates to person centred care in dementia.w3 w4 Evidence suggests a palliative care approach in dementia is favoured by formal and informal carers.3 The wishes of patients themselves, however, are hardly known—although preliminary results show high rates of satisfaction [...]
This film looks at the family support service for the families and carers of people who are at the end of their lives at Leicestershire and Rutland Hospice. Social workers work with other staff members to identify families who are in need of support. They can offer a sitting service to enable carers to have some time away from their caring responsibilities and bereavement support and counselling to those who have lost a loved one. In the film Benita, who looks after her mother, talks about the support she receives from a regular sitter. Trevor, a bereaved man, explains how he was initially reluctant to have counselling but came to find it helpful and supportive in dealing with his grief. This film was previously available under the title 'End of life care: supporting the carers', revised in 2014.
Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms.
Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly assessed with the Geriatric Depression Scale prior to and following bereavement. Random effects regression growth curve analyses examined the effects of treatment group and bereavement while controlling for other variables.
Results: The death of the care recipient led to reductions in depressive symptoms for both caregiving groups. Enhanced support intervention led to lower depressive symptoms compared with controls both before and after bereavement. Post-bereavement group differences were stronger for caregivers of spouses who did not previously experience a nursing home placement. These caregivers maintained these differences for more than 1 year after bereavement. Caregivers who received the enhanced support intervention were more likely to show long-term patterns of fewer depressive symptoms before and after bereavement, suggesting resilience, whereas control caregivers were more likely to show chronic depressive symptoms before and after the death of their spouse.
Implications: Caregiver intervention has the potential to alter the long-term course of the caregiving career. Such clinical strategies may also protect caregivers against chronic depressive symptoms that would otherwise persist long after caregiving ends.
Although satisfaction is an important outcome of medical care, there are no validated tools to quantify family satisfaction with hospital-based palliative care. In this nationwide postal survey, an instrument to measure informal carer satisfaction with an inpatient palliative care service was validated. A 60-item questionnaire was mailed to 1344 bereaved people who had lost their family members at 50 palliative care units in Japan, and 850 responses were analysed (response rate=64%). The reliability, construct validity, and convergent validity of the scale were examined after the responses were randomly divided into two groups: a training set used in the development phase (n=500) and a testing set used in the validation phase (n=350). The number of scale items was reduced from 50 to 34 through psychometric techniques in the development phase. In the testing sample, the overall Cronbach's coefficient alpha for the final 34-item scale was 0.98. A factor analysis revealed that the scale consisted of seven subcategories: Nursing Care, Facility, Information, Availability, Family Care, Cost, and Symptom Palliation. The total score of the scale was significantly correlated with the degree of global satisfaction of the bereaved (Spearman's r=0.78). In conclusion, this 34-item scale, the Satisfaction Scale for Family Members Receiving Inpatient Palliative Care (Sat-Fam-IPC), has acceptable psychometric properties and would be a useful tool to measure carer satisfaction with an inpatient palliative care service.
Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.
Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors. There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.
The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers-Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.
Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.
BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed.
OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers.
METHODS: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis.
RESULTS: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services.
CONCLUSIONS: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.
My wife, Pauline, died from Alzheimer’s disease at the age of 59. She was 51 when diagnosed after several years of problems. I cared for her at home. For the first 3 years, I maintained my employment, albeit on an increasingly part-time basis, but resigned from work and cared for her full-time for 5 years when her needs demanded round-the-clock attention. She remained in her own home to within 5 weeks of her death, when fracturing my leg put paid to my direct caring role.
The article was originally written along with two or three others as a result of a commission from Suffolk Carers for their magazine. This was some time before Pauline’s death. In ‘Sharing’, I tried to encapsulate the story of our marriage and the effect that Alzheimer’s disease had had on that relationship. However, the writing took over from the concept and it became too much of a personal statement about us for me to be happy about it being read by others while Pauline was still alive but unable to contribute, so I didn’t offer it for publication but filed it away. I think the writing was, in any case, a sort of much-needed therapy for me at that time.
Philip Ingram July 2003
This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.
This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones’ death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.
The National Bereavement Survey (VOICES) was commissioned by the Department of Health to follow up on a commitment made in the End of Life Care Strategy. This Statistical Bulletin describes the methods and summarises the key results of the first VOICES survey. The survey participants were 22,292 bereaved relatives of individuals whose death was registered from November 2010 to June 2011. Key findings are presented on the following themes: quality of care; dignity and respect; coordination of care; relief of pain and suffering; care and support for the patient; decision making; preferences and choice; support for relatives, friends and carers; and quality of care for people with dementia. The overall quality of care across all services in the last 3 months of life was rated by 12% of respondents as outstanding, 30% as excellent, 33% as good, 14% as fair, and 10% as poor.Being shown dignity and respect by staff was highest in hospices (87 per cent ‘all the time’ for hospice doctors and 80 per cent for hospice nurses) and lowest in hospitals (57 per cent ‘all the time’ for hospital doctors and 48 per cent for hospital nurses). For those who expressed a preference, the majority preferred to die at home (71 per cent), although the most commonly recorded place of death was a hospital (53 per cent).
Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.
Methods: Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.
Results: Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.
Conclusions: The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.
The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences; 51.7% of these individuals were male, 46% were female and 2.3% were transgender. The range of deaths experienced was from 0 to 110. Forty-four per cent of the carers were themselves HIV-positive. Of all the HIV carers in this study, 86.4% of them exhibited symptoms of post-traumatic stress disorder. Despite this, 81.8% had scores high enough to be indicative of post-traumatic growth. This study provides a portrait of bereaved HIV carers in Canada and both the positive and negative realities associated with that situation.
Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice.
Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice.
Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach.
Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK.
Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment.
Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.
A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.
Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age.
Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann–Whitney U test was used to compare differences between groups of different sex and age.
Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women.
Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.
Background: Caring for relatives with advanced cancer may cause psychological and physical ill health.
Aims: To evaluate the effectiveness of increased support for distressed, informal carers of patients receiving palliative care.
Method: The sample was composed of 271 informal carers who scored over 5 on the 28-item General Health Questionnaire (GHQ–28). The intervention comprised six weekly visits by a trained advisor. Primary outcome was carer distress (GHQ–28) at 4-week, 9-week and 12-week follow-up. Secondary outcomes were carer strain and quality of life, satisfaction with care, and bereavement outcome.
Results: Scores on the GHQ–28 fell below the threshold of 5/6 in a third of participants in each trial arm at any follow-up point. Mean scores in the intervention group were lower at all time points but these differences were not significant. No difference was observed in secondary outcomes. Carers receiving the intervention reported qualitative benefit.
Conclusions: The intervention might have been too brief, and ongoing help might have had accruing benefits. Alternatively, informal carers of patients with cancer may already receive considerable input and the advisor’s help gave little additional advantage; or caring for a dying relative is extremely stressful and no amount of support is going to make it much better.
Background: While previous research has suggested that health care assistants supporting palliative care work in the community regard the provision of emotional labour as a key aspect of their role, little research has explored the experiences of family carers who are the recipients of such support.
Objective: To explore the emotional labour undertaken by health care assistants working in community palliative care from the perspectives of both health care assistants and bereaved family carers.
Design: We conducted a qualitative interview study in 2011–2012 with bereaved family carers of cancer patients who had received the services of health care assistants in the community, and health care assistants who provided community palliative care services. Transcripts were coded and analysed for emergent themes using a constant comparative technique.
Settings: Three different research sites in the United Kingdom, all providing community palliative care.
Participants and methods: Semi-structured interviews were conducted with 33 bereaved family carers and eight health care assistants.
Results: Health care assistants view one of their key roles as providing emotional support to patients and their family carers, and family carers recognise and value this emotional support. Emotional support by health care assistants was demonstrated in three main ways: the relationships which health care assistants developed and maintained on the professional–personal boundary; the ability of health care assistants to negotiate clinical/domestic boundaries in the home; the ways in which health care assistants and family carers worked together to enable the patient to die at home.
Conclusion: Through their emotional labour, health care assistants perform an important role in community palliative care which is greatly valued by family carers. While recent reports have highlighted potential dangers in the ambiguity of their role, any attempts to clarify the ‘boundaries’ of the health care assistant role should acknowledge the advantages health care assistants can bring in bridging potential gaps between healthcare professionals and family carers.
Most terminally ill patients will express a wish to die at home. To achieve this, patients must rely on the support of family carers, who may experience emotional and health difficulties in providing such care, both before and after the death. Healthcare professionals can help to relieve the burden on family carers, and there is guidance available to direct GPs and other community healthcare professionals on providing good anticipatory palliative care for patients, and support for carers. This will increase the likelihood that patients at the end of life will achieve a 'good death', and family members will have a positive experience of care giving.
Purpose: Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.
Methods: A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.
Results: Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.
Conclusions: Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.
Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998—2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life.
Background: there is limited understanding of symptoms and care in the last few months of life for adults dying from causes other than cancer.
Objective: the aim of the study is to compare the experiences in the community in the last 3 months of life of older adults dying from cancer and non-cancer causes.
Design: the study employed a retrospective cross-sectional survey of bereaved relatives.
Setting: the survey took place across eight cancer networks in England.
Subjects: a random sample of 1,266 adults who registered a death occurring in someone aged 65 and over between August 2002 and February 2004 was drawn.
Methods: VOICES (Views of Informal Carers—Evaluation of Services) questionnaires were sent to sampled informants by the Office for National Statistics 3–9 months after the registration of the death. Differences in the reported experiences of cancer and non-cancer decedents in symptoms, treatment and care were assessed using Pearson’s chi square test.
Results: cancer decedents were significantly more likely than non-cancer decedents to have had pain (93 vs 79%, P < 0.001), nausea and vomiting (62 vs 40%, P < 0.001) and constipation (74 vs 66%, P = 0.03), whilst a greater proportion of non-cancer decedents experienced breathlessness (74 vs 65%, P = 0.006). Across both groups, less than half of the decedents were reported to have received treatment which completely relieved their symptoms some or all of the time. There were significant variations in the receipt of district nursing, general practitioner care and other health and social care and the reported quality of this care, for decedents dying of cancer and non-cancer causes. Further, informants for cancer deaths reported greater satisfaction with support received.
Conclusions: there are important differences in the reported experiences of older adults dying from cancer and non-cancer causes in the last months of life, independent of age.
This training programme and resource pack, produced by the University of Nottingham and funded by Marie Curie and Dimbleby Cancer Care, are intended to offer basic knowledge and skills for those who provide support for informal carers (usually family members or friends) who are providing home-based end of life care. There are seven sessions in the programme, which can be facilitated over a one-day course; each session contains extra content and exercises that can be used to expand the programme. The sessions are: introduction and welcome; caring and being cared for; supporting in practice; being a safe supporter; the principles of supporting; boundaries and exit strategies; and ongoing learning and development. The training pack comprises: a facilitator handbook; a trainee workbook; resources selected by bereaved carers; pre-course reading; a promotional poster template; and session slides.
Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.
Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.
Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.
Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.
Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.
Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.
Background: The aim of this study was to develop a tool to measure the family's difficulties in caring for cancer patients at the end of life at home: Family's Difficulty Scale in end-of-life home care (FDS).
Methods: The draft of the FDS was derived from a pilot interview survey and literature reviews. The questionnaires were sent to 395 bereaved family caregivers whose family members were patients with terminal cancer receiving home service.
Results: We obtained 306 responses (response rate, 81%). Factor analysis resulted in 29 items and 8 factors: Burden of Care, Concerns about Home Care Doctor, Balance of Work and Care, Patient's Pain and Condition, Concerns about Visiting Nurse, Concerns about Home Care Service, Relationship between Family Caregivers and their Families, and Funeral Preparations. The cumulative rate of contribution was 71.8%. Cronbach coefficient α for the FDS was 0.73–0.75; the intraclass correlation coefficient in the test–retest examination was 0.75–0.85. Evidence for construct validity was confirmed by convergent and divergent validity. Concurrent validity was confirmed by significant correlations between identified factors and concurrent measures.
Conclusion: The validity and reliability of this new instrument were confirmed. This scale should help home care providers to assess and focus on family difficulties and provide individualized care for the family who cares for a patient with terminal cancer at home.
The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of ‘family caregiving’, ‘end of life’, and ‘needs’ are required as well as greater application and testing of theoretical and conceptual explanations.
Background: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models.
Aim: To describes how patients and carers view health and social care in the last year of life.
Methods: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis.
Results: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent.
Conclusions: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.
With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005–June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.
This study investigated (a) whether carer bereavement outcome is affected by the achievement of the patient’s and/or carers’ preferred place of death and (b) the relationship between carer satisfaction with end of life care and bereavement outcome. Participants were 216 carers of patients referred to hospice at home (H@H). Prospective recording of preferred and actual place of death were obtained from H@H records. Carers’ level of grief and mental health and assessment of end of life care were obtained through postal survey three to four months post-bereavement. Fulfilment of carer preference for place of death only related to post-bereavement mental health at P < 0.1. Adequacy of psychological support showed the clearest relationship with bereavement outcome both in univariate and multivariate analyses. The level of support, particularly psychological, may be more important for carers’ bereavement outcome than achievement of the preferred place of death for the patient.
This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and carers.
Background: Informal carers provide the bulk of palliative home care. They largely rely on general practitioners (GPs) and district nurses to support them in this role, yet little is known about what carers themselves consider important in this support.
Aim: To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support.
Design Of Study: Retrospective interviews. Setting: Primary care in Cambridgeshire.
Method: Semi-structured interviews with bereaved carers of 48 patients with cancer and 12 patients with non-cancer diagnoses. Content analysis of carers' evaluative descriptions of GP and district nurse support.
Results: The accessibility of the GP and district nurse emerged as the most important aspect of support. Enlistment of help from other agencies was also extensively mentioned, together with provision of equipment. Attitude or approach during interactions, and relationship with the professional were important, particularly regarding GP support, whereas support for the carer, information, and symptom control were mentioned less often. Data suggested that support was not as good for older patients (> or =75 years), but this finding requires further investigation.
Conclusion: Results largely confirmed findings of previous, quantitative research and the importance of a patient-centred approach. What emerged most strongly, however, was the central importance of accessibility of support services for lay carers responsible for end-of-life home care. This mainly concerned GP and district nurse support, but accessibility of additional care and equipment were also important. In short, carers' main focus was the basic support that enabled them to sustain care in the home.
Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.
This study used a randomized controlled trial design to investigate the impact of hospice at home (HAH) on caregiver bereavement outcome. Secondary analyses considered the association between bereavement, place of death, and carers' assessment of support. Ninety-six informal carers of patients referred to HAH were surveyed six weeks post-bereavement about the quality of terminal care. Carers next completed measures of their own bereavement response and general health six months post-bereavement. There was no evidence that HAH had an impact on bereavement outcome. In contrast, perceptions of inadequate terminal support and high symptom severity were associated with worse carer bereavement response. However, it remains unclear whether carers' retrospective ratings constitute an accurate account of symptoms and care. Home deaths were associated with both better bereavement response and better physical health post-bereavement than were inpatient deaths. Further research is needed to investigate the implications of death at home for the carer.
The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining. The study design involved an in-depth qualitative interview with each patient soon after referral to the study, followed by an interview some 4 weeks later and subsequent tracking interviews by telephone at 2–4 week intervals until death occurred. Interviews were also conducted with main coresident carers soon after patient referral to the study and again in the post-bereavement period. Thirteen factors were identified as shaping the place of death preference of patients and carers. These are organised into four thematic domains: the informal care resource, management of the body, experience of services, and existential perspectives. In documenting these factors, this paper adds significantly to current knowledge on the factors that shape place of death preference, a field of enquiry acknowledged to be underdeveloped (J. Palliative Med. 3 (2000) 287). More importantly, it uncovers some of the reasons that underpin these preferences. Our research revealed a much stronger preference for deaths in a hospice than had been anticipated, leading us to take a qualified stance on the current policy drive in favour of home deaths by those charged with delivering UK cancer and palliative care services.
Community (district) nurses play a significant role in assisting and supporting bereaved informal carers (family members and friends) of recently deceased clients of palliative care. Bereavement care demands a wide range of competencies including clinical decision-making. To date, little has been known about the decision-making role of community nurses in Australia. The aim of this study was to conduct in-depth examination of an existing data set generated from semi-structured interviews of 10 community nurses providing follow-up bereavement care home visits within an area health service of a metropolitan region of Sydney, Australia. A grounded theory approach to data analysis generated a model, which highlights an interaction between ‘the relationship’, ‘the circumstances’ (surrounding the bereavement), ‘the psychosocial variant’, ‘the mix of nurses’, ‘the workload’, and ‘the support’ available for the bereaved and for community nurses, and elements of ‘the visit’ (central to bereavement care).
The role of community nurses in bereavement care is complex, particularly where decision-making is discretionary and contingent on multiple variables that effect the course of the family's grief. The decision model has the potential to inform community nurses in their support of informal carers, to promote reflective practice and professional accountability, ensuring continuing competence in bereavement care.
Bereaved people in England rate the care provided by hospitals at the end of their relative’s life lower than that provided by hospices, care homes, and services in the community, show the results of a survey published by the Office for National Statistics.1
Overall, 75% of bereaved people rated the quality of care of their relative or friend in the last three months of life as outstanding, excellent, or good and 10% as poor, found the annual national survey of bereaved people, VOICES (Views of Informal Carers—Evaluation of Services).
However, quality of care was rated lower when the patient died in hospital than when they died in other settings: […]
Many studies have identified negative and distressing consequences experienced by informal cancer carers, but less attention has been given to positive and beneficial aspects of caring. This qualitative study examined the positive aspects of caring as subjectively constructed by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole.
Method: Twenty-three bereaved informal cancer carers were interviewed, and their accounts were analyzed using a thematic analytical approach from a phenomenological perspective.
Results: The participants were able to identify positive and beneficial aspects of caring. These included the discovery of personal strength, through adversity, acceptance, and necessity; the deepening of their relationship with the person for whom they cared; and personal growth through altered relationships with others and altered perspectives on living. Many participants gave accounts of focusing on these positive benefits when they reflected on their caring experiences.
Significance of results: We concluded that benefit finding in the face of adverse events serves an important function in allowing individuals to incorporate difficult experiences into their worldview in a meaningful way, thus maintaining positive beliefs about the world. This has implications for the development of interventions for informal cancer carers and for those who are bereaved following caring.
Background: This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.
Methods: Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.
Results: Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling.
Discussion: Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.
We conducted a mixed-methods case study to explore the perceptions of family caregivers and palliative cancer patients of home telehealth, and their experience with it. The intervention in the randomized controlled trial from which study participants were selected consisted of specialist nurses available 24 hours per day who communicated with patients and families using videophones, with optional remote monitoring. Qualitative data were collected from interviews with five patient/caregiver dyads and seven bereaved family caregivers, direct observation and nursing documentation. Quantitative data were collected from computerized nursing documentation and analyzed for patterns of use. During the study there were 255 contacts, including videophone, telephone or face-to-face visits, between tele-nurses and families. Overall the patients, family caregivers and tele-nurses felt that home telehealth enabled family caregiving, citing increased access to care, and patient and family caregiver reassurance. Pain management was the most common reason for initiating contact with the nurse, followed by emotional support. Concerns included lack of integration of services, inappropriate timing of the intervention and technical problems. The case study confirmed the importance of timely and accessible care for a group of clinically vulnerable, dying cancer patients and their family caregivers.
The importance of evaluating systematically the effectiveness of hospice care has been noted for at least 20 years. There is, however, limited evidence about whether and how the care provided to terminally ill patients by in-patient hospices in the UK differs from that provided in NHS hospitals. In this article, we, therefore, present a comparison of hospice in-patient care and hospital care for cancer patients in the UK, from the perspective of bereaved relatives who had experienced both types of care during the last 3 months of the patient’s life. The Office of National Statistics drew a random sample of 800 deaths in South London in 2002, and sent the person who registered the death (the informant) a Views of Informal Carers – Evaluation of Services (VOICES) questionnaire 3–9 months after the death, with up to two reminders. There was a response rate of 48%. For this analysis, 40 cancer patients whose informant reported both a hospice in-patient admission and a hospital admission in the last 3 months of life were identified. Informants answered the same questions about each admission and responses on these were compared. There were statistically significant differences between respondents’ views of hospice and hospital care on eight out of 13 variables measuring aspects of satisfaction with care, with a trend towards statistical significance on a further two: in all cases respondents rated hospice care more positively than hospital care. There were no differences in the experience of pain and breathlessness in the two settings, but respondents rated pain control by the hospice as more effective. In comparison to hospital care, from the perspective of bereaved relatives, hospice in-patient care provided better pain control, better communication with patients and families, and better medical, nursing and personal care, which treated the patient with more dignity. Further research is needed to confirm these findings using a wider sample of in-patient hospices in the UK and including the perspectives of patients. Providing high quality care for terminally ill patients in acute hospitals remains an important challenge.
Planning for the future for those adults with a learning disability who live with older carers is an important aspect of the White Paper Valuing People (DoH, 2001). Indeed, such planning is essential if crisis situations are to be avoided, particularly the double shock to service users of losing their home at a time when they are also bereaved. Most research about future planning has tended to focus on the perspective of the family carer rather than that of the service user. To rectify this situation, this paper considers the findings of a project which directly sought the views of adults with a learning disability, including their experiences of living with their older carers and planning for their future housing and support. The findings demonstrate that adults with a learning disability are very aware of the likelihood of an end to family care and that they have preferences about their future housing and support. However, planning for the future can be difficult because of the mutually supportive relationships that often exist in these families.
Background: older patients are less likely to receive palliative care than younger patients. As patient and primary carer age correlate positively, patterns may be due to carer rather than patient age, and reflect better ability to obtain support among younger carers.
Objective: to investigate how both patient and carer age relate to palliative care use, controlling for relevant variables.
Design: comparison of patients who received community Macmillan nurse specialist advice, Marie Curie nursing or inpatient hospice care with patients who did not, using univariate analysis and multivariate logistic regression. Patient and carer data were collected through electronic service record linkage and carer post-bereavement interviews.
Sample: patients referred to a hospice at home service whose primary carer could be interviewed (n = 123).
Results: whilst a cancer diagnosis was an important determinant of access for all services considered, logistic regression shows that carer age, but not patient age, and hospice at home access predicted Marie Curie nursing use. Both patient and carer age predicted use of Macmillan nurse advice. Age of the patient, but not carer age, predicted admission to inpatient hospice, alongside requiring care for over a month (all P<0.05).
Conclusions: carer age may be as important a predictor of palliative home care use as patient age. We need to investigate whether younger carers have greater support needs or show greater effectiveness in obtaining help and to assess whether older carers need more assistance in recruitment of support.
Background: People with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.
Aims: To define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.
Method: In-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.
Results: The data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.
Conclusions: The quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.
The National Bereavement Survey (VOICES) aims to assess the quality of care delivered in the last three months of life for adults who died in England and to assess variations in the quality of care delivered in different parts of the country and to different groups of patients. The survey participants were 49,207 bereaved relatives of individuals whose death was registered from 1st January 2012 and 30th April 2012. Key findings are presented on the following themes: quality of care; dignity and respect; coordination of care; pain relief; decision making; preferences and choice; support for relatives, friends and carers; and quality of care for people with dementia.
The majority of adults with a learning disability live with family carers, many of whom are ageing and have support needs of their own. Planning for the future thus becomes the key to preventing a crisis situation when family care is no longer viable because of death or ill health. Existing knowledge and practice are largely based upon the perspective of professionals and carers. This study explores the views, aspirations and concerns of adults with a learning disability, about living at home and planning for the future. Findings show that participants were very aware of the need for alternative housing or support in the future and had clear preferences about their future options. However, they also showed extensive concern for their family carers and this often impacted on their willingness to plan for the future or to move to alternative housing. Their demonstrable awareness of the inevitable death or ill health of family carers, and willingness to engage with the implications, emphasize the importance of involving adults with a learning disability in planning for their future, as well as providing them with bereavement support.
Background: Dying in the preferred place is considered a key requirement for a “good death.” The aims of our study were to explore preferred places of death of deceased people and their bereaved relatives in Rhineland-Palatinate (Germany). We further wanted to assess the congruence between preferred and actual place of death.
Methods: The cross-sectional study was based on a random sample of 5000 inhabitants of Rhineland-Palatinate (Germany) who died between May 25 and August 24, 2008. Relatives of these deceased persons were interviewed by a written survey.
Results: After removing duplicates, 4967 questionnaires were sent out, 3832 delivered, and 1378 completed, yielding a response rate of 36.0%. Regarding the deceased, 93.8% wanted to die at home, 0.7% in a hospital, 2.8% in palliative care, 2.4% in a nursing home, and 0.3% elsewhere. The figures for the relatives were 80.7%, 4.3%, 7.5%, 7.1%, and 0.5%, respectively. Of the deceased 58.9% and of the relatives 59.1% had their wish fulfilled. Logistic regression analysis revealed that living in a rural municipality (adjusted odds ratio [aOR]: 1.88; 95% confidence interval [CI]: 1.02–3.43), rural town (aOR: 2.30; 95% CI: 1.17–4.49) or small town (aOR: 1.95; 95% CI: 1.04–3.68), having a nonworking relative (aOR: 1.79; 95% CI: 1.16–2.76), and living together with a relative (aOR: 2.28; 95% CI:1.57–3.32) increases the probability to die in the preferred place.
Discussion: Because the availability of a relative was the most important factor to die in the preferred place, relatives of dying people should be supported in providing informal care. The introduction of palliative home care teams should allow more people to die in their preferred place by easing the burden of informal carers.
It is bad enough that carers witness the decline of the person closest to them, but to have to attend to their every need and be on the receiving end of their anger and frustration is worse. The author explains how one care home has helped her mother cope with her living loss.
Context: Family carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear.
Objectives: To ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information.
Methods: A longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered at six (T2; n=167) and 13 months postdeath (T3; n=143).
Results: The PG symptoms at T1 were a strong predictor of both PG symptoms and PGD at T2 and T3. Greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism also were risk factors for PG symptoms.
Conclusion: Screening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG. We recommend screening carers six months after the death of their relative to identify most carers with PG.
Context: A number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.
Objectives: The aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.
Methods: This is a mortality follow-back survey of 2,000 cancer deaths representative of the country. Caregivers were interviewed about patients' experiences by using a tailored version of the View of Informal Carers—Evaluation of Services questionnaire.
Results: Valid interviews were obtained for 84% (n=364) of the cancer patients who died in hospital. Most Italian cancer patients dying in hospital suffered from a number of untreated or poorly treated symptoms, and only a few reported an acceptable control over physical suffering. Moreover, only two-thirds of patients and one-third of caregivers received basic information on therapies and care. About one-third of the caregivers expressed dissatisfaction with the health care received. The probability of being satisfied was more likely for caregivers of patients living in the north of Italy; caregivers of patients who had not experienced or were only slightly distressed by fatigue; and caregivers who were generally satisfied with hospital facilities and when the health care professionals had provided appropriate information to both patients and caregivers.
Conclusion: This study revealed poor quality of EOL care in Italian hospitals, with almost one-third of the caregivers expressing their clear dissatisfaction. A national policy is, therefore, urgently called for to improve the quality of EOL care in Italian hospitals.
Community (district) nurses (CNs) are well positioned to provide follow-up home visits to bereaved families and carers of their recently deceased palliative clients. An Australian survey of CN's (n = 58, response rate 29%) described their experiences of bereavement support visits, perceptions of their role in bereavement care and their professional support needs. Although positive experiences were commonly reported, with 95% of participants considering bereavement follow-up visits as consistent with their role, 53% found the visits difficult for reasons such as the nurse or client not understanding the purpose, the CN‘s excessive personal identification with the client's situation, the emotional intensity of visits, and lack of confidence or skills despite prior training. The nature and quality of the CN‘s prior relationship with the bereaved family was an important determinant of the visits’ success. Results highlight the value of bereavement support visits, while identifying professional development needs. Managing emotionally intense episodes should receive priority in preparing CN's for this challenging role.
Background: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers.
Aim: To elicit family carers’ views about the community support that made death at home possible.
Design and setting: Qualitative study in East Devon, North Lancashire, and Cumbria.
Method: Participants were bereaved family carers who had provided care at the end of life for patients dying at home. Semi-structured interviews were conducted 6–24 months after the death.
Results: Fifty-nine bereaved family carers were interviewed (54% response rate; 69% female). Two-thirds of the patients died from cancer with median time of home care being 5 months and for non-cancer patients the median time for home care was 30 months. An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control.
Conclusion: The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.
Background: Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.
Methods: The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses.
Results: Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked).
Conclusion: The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.
The care that people receive at the end of their lives has a profound impact not only upon them but also upon their families and carers. At the most difficult of times, their experience will be made worse if they encounter poor communication and planning or inadequate professional expertise. The Health Committee has looked at the state of end of life care since the independent Review of the Liverpool Care Pathway, chaired by Baroness Neuberger, and found great variation in quality and practice across both acute and community settings.
Looks at the state of end of life care, highlighting great variation in quality and practice across both acute and community settings. The report argues that round-the-clock access to specialist palliative care in acute and community settings would greatly improve the way that people with life-limiting conditions and their families and carers are treated, especially if there were opportunities to share their expertise with other clinicians. The report sets out a number of action points for improvement, and in particular recommends that social care should be free at the end of life. The report suggests that all staff who provide palliative and end of life care to people with life limiting conditions should receive training in advance care planning, including the different models and forms that are available and their legal status. It also calls on the government to provide free social care at the end of life.
Objectives: A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care.
Design: Qualitative in-depth interviews with bereaved informal carers of people with dementia.
Setting: United Kingdom.
Participants: Forty bereaved carers – 31 women and nine men – with an age range of 18–86 years and from wide socioeconomic backgrounds participated.
Main outcome measures: Experiences of carers of care for person with dementia during last year of life.
Results: The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices.
Conclusion: The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settings – examples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care.
Background: End-of-life care (EOLC) is a key component in care of older people. However, evidence suggests that the oldest old (>85 years) are less likely to access specialist EOLC.
Objective: The study's objective was to explore experiences of EOLC among the oldest old and determine their reported preference for place of death.
Design: The study involved a self-completion postbereavement survey.
Methods: A census was taken of deaths registered between October 2009 and April 2010 in two health districts, identified from death certificates. Views of Informal Carers-Evaluation of Service (VOICES)–Short Form was sent to each informant (n=1422, usually bereaved relative) 6 to 12 months after the death.
Results: Of 473 (33%) who responded, 48% of decedents were age 85 or over. There were no age differences in reported care quality in the last three months, but in the last two days the oldest old were reported to receive poorer relief of nonpain symptoms and less emotional and spiritual support. Compared to people under age 85, the over 85s were less likely to be reported to know they were dying, to have a record of their preferences for place of death, to die in their preferred place, to have enough choice about place of death—and more likely to be reported to have had unwanted treatment decisions. Being over 85 years was associated with a reduction in the odds of home death (OR=0.36); failure to ascertain and record preference for place of death contributed to this.
Conclusions: Age-associated disparity exists in care provided in the last two days and the realization of preferences.
Caregiving is one of the most important personal sacrifices family members make for their older loved ones. There are at least 43.5 million caregivers in the United States who provide informal family caregiving, averaging about 19 hours of care per week, for an average of 4 years.1 Although family members, especially spouses and adult children, usually occupy these caregiving roles, in diverse cultural and ethnic groups with collectivistic values, caregivers also may be fictive kin (relatives not related by blood, such as godchildren, family friends, or neighbors).