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

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

Complex contradictions in conceptualisations of 'dignity' in palliative care.

BACKGROUND: Internationally, increasing attention is being paid to understanding patient experiences of health care. Within palliative care, the Views of Informal Carers - Evaluation of Services (VOICES) questionnaire is commonly used for this purpose. Among its objectives is to ask family members if their relatives were treated with dignity at the end of life. This is regarded as useful for understanding the quality of the health care received. AIM: To highlight the differences between family members' reports of dignity in the care provided to their relatives at the end of life, as reported in the VOICES questionnaire, and their narratives about the care their relatives received. METHODS: A total of 21 cognitive interviews were conducted during a New Zealand pilot of the VOICES questionnaire. RESULTS: Discrepancies between ratings of dignity and the lived experience of care suggest that lay understandings of dignity may not be congruent with that of health care providers. CONCLUSIONS: Bereaved family members' self-reports of dignity in end-of-life care captured using survey methods alone are inadequate to understand the complex ways in which individuals conceptualise and experience dignity within a health care context. The authors advocate consideration of multiple, complementary approaches to gathering consumer experiences of end-of-life care, as well as research which enables service users to interrogate what dignity in care means in an end-of-life context.

What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers.

BACKGROUND: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. AIM: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. DESIGN: A constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis. SETTING/PARTICIPANTS: A total of 58 participants (19 Maori and 39 non-Maori) who cared for 52 family members who died at >80 years of age participated in semi-structured interviews. RESULTS: A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified, including poor health (notably dementia), moving into an aged care facility and lack of access due to transport difficulties. An active withdrawal from community at end of life was also noted. Carers felt limited support from community currently, but identified that communities could play a particular role in reducing social isolation and loneliness among people of advanced age prior to death. CONCLUSION: Our study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.

The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context.

OBJECTIVE: The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Maori. The Maori collectivist worldview considers whanau (extended family) support as key at the end of life and privileges "kanohi ki te kanohi" (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Maori and non-Maori. METHOD: Cognitive interviews were conducted with 20 bereaved whanau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts. RESULTS: We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Maori in a culturally inappropriate manner. SIGNIFICANCE OF RESULTS: These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

Gender and family caregiving at the end-of-life in the context of old age: A systematic review.

BACKGROUND: As societies age and governments attempt to manage within constrained health budgets by moving care into community settings, women will be called upon to provide more palliative care in old age. However, little is known about gendered disparities for caregivers of people over the age of 65 years. AIM: To identify and synthesise the empirical literature between 1994 and 2014 that focusses on gender and family caregiving for people over the age of 65 years with a life-limiting illness. DESIGN: Systematic review of qualitative and quantitative studies conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Supplemental review using a novel feminist quality appraisal framework. DATA SOURCES: Search of MEDLINE, CINAHL, PsycINFO, Sociological Abstracts and Gender Studies to find empirical studies on gender and family caregiving at end-of-life in the context of old age. RESULTS: Of 19 studies identified, 9 presented thorough gender analyses. Gender themes included why people care, how they care, and the consequences of providing care. Women caregivers experienced a greater degree of mental and physical strain than their male counterparts. This was linked to societal expectation that women should provide a greater degree of care at the end-of-life for family members. CONCLUSION: Palliative family caregiving for older adults is gendered. Gender affects why people care and the consequences of providing care. Palliative care literature needs to incorporate a greater gender focus for future research and policy makers need to be aware of the gendered ramifications of providing more palliative care in the community.

Te Pakeketanga: living and dying in advanced age--a study protocol.

BACKGROUND: The number of people dying in advanced old age is increasing rapidly and building the evidence base regarding end - of - life care for older people has been identified as an international policy priority. The unique opportunity to link longitudinal studies of ageing with studies exploring the end of life circumstances of older people remains under-exploited internationally. Very little is known about the specific circumstances, cultural needs and care preferences of indigenous older people, including Maori, at end - of - life and the needs of their whanau/ extended family carers. METHODS: We will use rigorous qualitative methods to conduct post-bereavement interviews with bereaved whanau and family of 50-60 people who died >80 years; approximately half of participants will be Maori. The older decedents were participants in the first longitudinal study of older people involving a specific indigenous cohort internationally: Te Puawaitanga O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age: a Cohort Study in New Zealand (LiLACS NZ). Prior to death, they completed a questionnaire regarding their end-of-life preferences and nominated a family or whanau member to participate in this separate study exploring end-of-life circumstances of those in advanced age. DISCUSSION: Recommendations to improve care will be formulated in collaboration with participants and their local hapu (sub-tribe). Ultimately this study has the potential to inform better outcomes for the growing numbers of people dying in advanced old age both in New Zealand and internationally, as well as their whanau and family caregivers. It also highlights the ability to generate an in-depth understanding of end-of-life circumstances by appending studies of palliative and end-of-life care onto existing longitudinal studies.