Laura M. Funk

Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008)

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.

Supporting lay carers in end of life care: current gaps and future priorities

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers’ needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, “repair” approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

Social Support, Caregiving, and Aging

Cet article examine la littérature internationale rédigée en anglais sur le thème du soutien social et des soins gérontologiques depuis le début des années 1990. La littérature s’est développée, mais il manque de consensus sur le sens des termes et sur la mesure. L’intérêt reste une constante pour l’aide pratique, les prestations de soutien social, et la demande et les résultats négatifs pour les aidants, avec de plus en plus de questions plus théoriques, auxquelles on accorde de moins en moins d’importance, sur les résultats négatifs du soutien reçu, ainsi que sur les conséquences positives de la prestation de soins. Le soutien social, néanmoins, est dûment reconnu comme un déterminant social de la santé et reçoit l’attention au niveau des politiques—qui sont tous deux d’importants changements à partir de deux décennies—et ajoutent a l’intérêt ce domaine recevra de chercheurs dans les décennies à venir. Il reste de nombreuses questions sans réponses quant à l’évolution du contexte sociétal, mais il est clair que le soutien social des personnes – y compris la vieillesse et tout au long de la vie – se poursuivra dans l’avenir, quoique dans des formes toujours renouvelées. This article reviews the international English-language literature on social support and caregiving in gerontology since the early 1990s. The literature has grown, but consensus on the terms’ meaning and measurement is lacking. Interest is ongoing in practical help, in benefits of social support, and in demands and negative outcomes for caregivers, with growing but less emphasis on more theoretical questions, on negative outcomes from the receipt of support, and on positive consequences of providing care. Nevertheless, social support is duly recognized as a social determinant of health and receiving attention at policy levels – both are significant shifts from two decades ago and add to the interest this area will receive from researchers in coming decades. There remain many unanswered questions regarding the changing societal context, but it is clear that the social support of others – throughout our lives including old age – will continue in the future, albeit in ever-changing forms.

Family caregiver learning—how family caregivers learn to provide care at the end of life: A qualitative secondary analysis of four datasets

Background: Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. Aim: The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Design: Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data sources: Data included qualitative interviews with 156 family caregivers of dying people. Results: Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Conclusions: Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

Home care nurses’ decisions about the need for and amount of service at the end of life

AIMS We explore home care nurse decision-making about the need for and amount of service by clients and families at the end of life. We identify factors nurses refer to when describing these decisions, situated within contextual features of nursing practice. BACKGROUND Home care nurses are often responsible for decisions which have an impact on the access of clients and families to services at the end of life. Understanding how these decisions, are made, factors that are considered, and contextual influences is critical for improving access and enhancing care. METHODS Qualitative data were collected between 2006 and 2008 from two samples of home care nurses: the first group (n = 29) recorded narrative descriptions of decisions made during visits to families. The second group (n = 27) completed in-person interviews focusing on access to care and their interactions with clients and families. Data were analysed with thematic coding and constant comparison. FINDINGS Participants described assessing client and family needs and capacity. These assessments, at times integrated with considerations about relationships with clients and families, inform predictive judgements about future visits; these judgments are integrated with workload and home health resource considerations. In describing decisions, participants referred to concepts such as expertise, practice ideals and approaches to care. CONCLUSION Findings highlight the role of considerations of family caregiver capacity, the influence of relationships and the importance of the context of practice, as part of a complete understanding of the complexity of access to care at the end of life.

Associations Between Filial Responsibility and Caregiver Well-Being Are There Differences by Cultural Group?

A sense of filial responsibility, particularly where it is a strong cultural norm, may be beneficial for caregiver self-rated health and well-being. The purpose of this study was to examine associations between filial responsibility attitudes and both self-rated health and well-being within three cultural groups: Caucasian Canadian (n = 100), Chinese Canadian (n = 90), and Hong Kong Chinese (n = 125). Respondents were interviewed in person using a structured questionnaire. Multivariate analyses for the entire sample indicated associations between filial responsibility attitudes and both self-rated health status and overall well-being. Analyses performed within each cultural subgroup indicated that filial responsibility is associated with worse self-rated health in the Caucasian Canadian group. The results suggest caution in assuming that filial responsibility attitudes will be beneficial for caregiver outcomes; there may also be cultural variation.

Filial responsibility: does it matter for care-giving behaviours?

ABSTRACT This paper examines the relationship between attitudes of filial responsibility and five different types of care-giving behaviours to parents among three cultural groups. It does so within an assessment of the relative importance of cultural versus structural factors for care-giving behaviours. Face-to-face interviews were conducted with 100 Caucasian-Canadians, 90 Chinese-Canadians and 125 Hong Kong-Chinese. Multiple regression analyses assessed the association of cultural and structural factors with behaviours among the total sample and each of the three cultural groups. Limited support was found for an association between care-giving attitudes and care-giving behaviours. Attitudes are related to emotional support only among the two Chinese groups as well as to financial support among Chinese-Canadian respondents and to companionship among Hong Kong-Chinese respondents. Attitudes are not the strongest predictors and are unrelated to assistance with basic and instrumental activities of daily living. However, cultural group per se is a strong predictor of care-giving behaviours as are: parental ill health, living arrangements, and relationship quality. This study suggests gerontological assumptions about the role of societal norms and personal attitudes in parental care-giving should be questioned. It also suggests the need for further inquiry into unpacking those aspects of ‘cultural group’ that are related to behavioural differences, and the importance of examining multiple types of care-giving behaviours and of distinguishing task-oriented helping behaviour from other types of assistance.

Articulating the Role of Relationships in Access to Home Care Nursing at the End of Life

In this article, we draw on data collected from two samples of home care nurses to examine how relationships between nurses and family caregivers intersected with access to palliative home care nursing services. Participants referred to relationships as important for their practical benefits and for access to care: good relationships enhanced the nurse’s ability to assess clients and families and fostered the family’s trust in the nurse’s care. Although emphasizing the need to build and maintain relationships (often requiring time), participants simultaneously referred to beliefs about the need to control the personal emotions invoked in relationships so as to ensure appropriate access for clients and families. Future research should further explore how the organizational and resource context, and the culture of palliative care, shape nurses’ beliefs about relationships in their practice, the nature and types of relationships that can develop, and both client and family caregivers’ access to care.

Filial Caregivers; Diasporic Chinese Compared with Homeland and Hostland Caregivers

This paper examines the distinctiveness and similarities of diasporic Chinese Canadian caregivers to older adults compared with Hong Kong Chinese and Caucasian Canadian caregivers. Particular interest lies in whether filial responsibility, actual caregiving behaviours, health and a variety of structural characteristics cluster in ways that suggest these three groups of filial caregivers are distinctive. Data were collected using face-to-face interviews. The findings suggest that the caregivers participating in this study cluster into types that roughly approximate their original cultural groupings. Interestingly, however, the diasporic or immigrant Chinese appear more similar to homeland (Hong Kong) than hostland (in this instance Caucasian) Canadian caregivers – all diasporic Chinese were originally, or their ancestors were, from Hong Kong. Chinese Canadians are not necessarily in the middle in terms of caregiving behaviours, but rather show variability depending on the behaviour examined. In addition, these findings confirm past research that Western culture does not have clear and explicit norms of filial responsibility to the same extent as does Chinese culture.