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

Ward‐Griffin, Catherine; McWilliam, Carol L.; Oudshoorn, Abe

doi:10.1177/1074840712462134

Cited by 33 publications

(79 citation statements)

References 54 publications

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“…Family caregivers are essential to attain end of life at home. In Western societies, family caregivers in hospice palliative home care (HPHC) have assumed increased responsibility of administering complex treatments (Funk et al., ), while they also have engaged in the emotional work of managing their own feelings, as well as those of other family members (Ward‐Griffin, McWilliam, & Oudshoorn, , ). Coping with care demands and simultaneously making meaning of life and death, family caregivers often have prioritized time spent with terminally ill relatives and neglected their own health (Brown, ; Ward‐Griffin et al., ).…”

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confidence: 99%

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

et al. 2016

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Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews (n = 25), observations of agency home care visits (n = 9) and analyses of policy and home care agency documents (n = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences.

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Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

et al. 2016

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“…Such an approach may also reinforce family carers' already established tendency to prioritize client needs over their own (Harding & Higginson, 2001;Ward-Griffin, McWilliam, & Oudshoorn, 2012). This was especially evident when there were disagreements between carers and clients, leading to questions about whether empowering one family member can be simultaneously disempowering to another, such as when a carer is not initially supportive of a home death.…”

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confidence: 99%

Applying the concept of structural empowerment to interactions between families and home‐care nurses

et al. 2019

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Interpretations of family carer empowerment in much nursing research, and in home‐care practice and policy, rarely attend explicitly to families’ choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home‐care nurses’ interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed.

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“…Families are widely regarded as the “principle source of support” for persons with an illness (5 -9). However, family members themselves often need support from health-care personnel when their relatives are admitted to hospital (8,10 -12).…”

Section: Introductionmentioning

confidence: 99%

Nursing Strategies for Engaging Families of Older Immigrants Hospitalized for End-of-Life Care

Johnstone

Hutchinson

Rawson

et al. 2016

Journal of Patient Experience

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Background:Engaging with families of older non-English-speaking background (NESB) immigrants hospitalized for end-of-life (EOL) care can be challenging, especially when their cultures, lifeways, and family decision-making processes are unfamiliar to the nurses caring for them. Despite the recognized importance of family engagement when providing EOL care, the issue of ethnic minority family engagement has received little attention in the field.Aim:To explore and describe the strategies nurses use to facilitate engagement with families of older immigrant NESB patients hospitalized for EOL care.Methods:A qualitative descriptive approach was used. Data were collected via in-depth interviews conducted with 22 registered nurses recruited from 4 Australian health services.Findings:Using thematic analysis processes, 5 key strategies were identified: listening and understanding families, encouraging family members to speak first, dealing with angst, redressing naive views about the dying process, and managing intergenerational differences. Underpinning these strategies was a profound “will to engage” with the families and their cultural worldviews.Conclusion:Further cross-cultural comparative research is required to inform evidence-based policies, practice, and education on this issue.

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

Cited by 33 publications

References 54 publications

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Applying the concept of structural empowerment to interactions between families and home‐care nurses

Nursing Strategies for Engaging Families of Older Immigrants Hospitalized for End-of-Life Care

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