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

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

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Relational Experiences of Family Caregivers Providing Home-Based End-of-Life Care

Journal of Family Nursing ◽

10.1177/1074840712462134 ◽

2012 ◽

Vol 18 (4) ◽

pp. 491-516 ◽

Cited By ~ 14

Author(s):

Catherine Ward-Griffin ◽

Carol L. McWilliam ◽

Abram Oudshoorn

Keyword(s):

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Life Care ◽

Relational Experiences ◽

Home Based

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B10-C Why Not Ask the Experts? Family Caregivers' Experiences of Providing Palliative and End-of-Life Care

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2016.10.034 ◽

2016 ◽

Vol 52 (6) ◽

pp. e20-e21

Author(s):

Lisa Williams ◽

Tess-Moeke Maxwell ◽

Stella Black ◽

Gabriella Trussardi ◽

Janine Wiles ◽

...

Keyword(s):

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Life Care

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Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

Palliative & Supportive Care ◽

10.1017/s1478951517000232 ◽

2017 ◽

Vol 16 (3) ◽

pp. 260-268 ◽

Cited By ~ 11

Author(s):

Yoko Naoki ◽

Yoshinobu Matsuda ◽

Isseki Maeda ◽

Hideka Kamino ◽

Yoko Kozaki ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Family Caregivers ◽

Caregiver Burden ◽

End Of Life Care ◽

Care Service ◽

Palliative Care Service ◽

Family Satisfaction ◽

Life Care ◽

Care At Home

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

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Education Intervention “Caregivers Like Me” for Latino Family Caregivers Improved Attitudes Toward Professional Assistance at End-of-life Care

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909115584315 ◽

2015 ◽

Vol 33 (6) ◽

pp. 527-536 ◽

Cited By ~ 11

Author(s):

Dulce M. Cruz-Oliver ◽

Theodore K. Malmstrom ◽

Natalia Fernández ◽

Manas Parikh ◽

Jessica García ◽

...

Keyword(s):

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Education Intervention ◽

Life Care ◽

Latino Family ◽

Professional Assistance

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End-of-Life Plans for African American Older Adults With Dementia

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909118761094 ◽

2018 ◽

Vol 35 (10) ◽

pp. 1314-1322 ◽

Cited By ~ 3

Author(s):

Karen O. Moss ◽

Nancy L. Deutsch ◽

Patricia J. Hollen ◽

Virginia G. Rovnyak ◽

Ishan C. Williams ◽

...

Keyword(s):

Older Adults ◽

African American ◽

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Life Care ◽

Life Planning ◽

Care Recipients ◽

Life Plans ◽

End Of Life Planning

African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.

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Family Caregivers’ Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909118787779 ◽

2018 ◽

Vol 35 (12) ◽

pp. 1540-1546 ◽

Cited By ~ 5

Author(s):

Jacek T. Soroka ◽

Katherine Froggatt ◽

Sara Morris

Keyword(s):

End Of Life ◽

Family Caregivers ◽

End Of Life Care ◽

Terminal Illness ◽

Care Staff ◽

Life Care ◽

Cross Sectional ◽

Home Setting ◽

Care At Home ◽

At Home

Objectives: Although the experiences of family caregivers have received attention, little research has specifically explored caregivers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. Aim: We aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting to better understand what contributes to their confidence during end-of-life care. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data. Participants: Sixteen bereaved caregivers (14 individuals and 1 brother/sister dyad) from the midwestern United States who received support from 1 hospice participated in the study. Results: Four storylines running longitudinally through the interviews were identified as shaping, giving meaning to, and contextualizing caregivers’ confidence: values/relationships, stories of terminal illness, needs, and support. Caregivers’ confidence is shaped by the terminal illness of the person for whom they care and caregivers’ values and relationships. It is also influenced by their needs and the sources and strength of support they receive. Conclusions: This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers’ experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident.

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Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers

Dementia ◽

10.1177/14713012211066370 ◽

2022 ◽

pp. 147130122110663

Author(s):

Natashe Lemos Dekker ◽

Sascha R Bolt

Keyword(s):

End Of Life ◽

Family Caregivers ◽

Advance Care Planning ◽

End Of Life Care ◽

Fine Tuning ◽

Care Planning ◽

Life Care ◽

People With Dementia ◽

Advance Care ◽

Life Care Planning

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

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