Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis

Abstract

Background and objectives Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner's end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver's aged 75 and over whose partner is approaching end-of-life. We conducted a mixedmethod systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough's Weight of Evidence and Morgan's Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) "Embodied impact of care" whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) "Caregiving spouse's conceptualisation of their role" in which caregiver's navigated their self and marriage identities in relation to their partner's condition and expectations about gender and place; 3) "Learning to care" which involved learning new skills and ways of coping to remain able to provide care. We identified a recent upsurge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.

Dispensing care?: The dosette box and the status of low‐fi technologies within older people’s end‐of‐life caregiving practices

“…This analysis supports Ellis's calls for further research centring on material‐based practices of older people, particularly and in the context of end of life (Ellis and Muller, 2020). This provides an alternative to current scholarship that often privileges questions of care on a discursive level (Morgan et al, 2020),and tends to focusses on material practices enacted on older people without considering their ongoing and affective engagement with such technologies (Cleeve et al, 2020). Given the shift to provide older people's support and care at home and the growing responsibilities for families to provide medications, such insights into low‐fi technologies and care are timely.…”

“…Drawing attention to this function also attests to just how much relational work was required of partners to successfully engage with the dosette box which is typically conceptualised as a ‘self‐care’ technology, a point echoes similar insights made about blood pressure pumps (Weiner & Will, 2018). By making visible the knowledge gained through engagement with the dosette box, this analysis builds on calls in scholarship and policy to recognise the currently neglected expertise of family carers (Morgan et al, 2020). Sociologically, this article deepens accounts of the circulation of power between hospital and home (Foucault, 2008; Heaton, 1999; Langstrup, 2013).…”

“…Concerns have been raised by the charity sector that older people have been 'left to fill the gap' of inadequate care provision of the social care system (Age UK., 2017). Little remains known about their care practices, though some recent studies have explored the health impacts of caring and the identity-work involved in everyday caring (Morgan et al, 2020). Few studies have explicitly addressed the material aspects of the caring practices of older spousal carers, and less still about their use of technologies to provide end-of-life care (Morgan et al, 2020).…”

“…Little remains known about their care practices, though some recent studies have explored the health impacts of caring and the identity-work involved in everyday caring (Morgan et al, 2020). Few studies have explicitly addressed the material aspects of the caring practices of older spousal carers, and less still about their use of technologies to provide end-of-life care (Morgan et al, 2020). The aim of this article is therefore to understand how the dosette box mediates older spousal carer's experiences of providing daily care for their partners approaching their end of life.…”

Cutting through the intersections to care for caregivers: Secondary data analysis of a carers support service in Glasgow, Scotland

“…Men in our dataset were also more likely than women to be caring for their parents. Morgan et al's (2020) literature review highlighted the complexity of caring as an older adult and outlines specific considerations for health and social care services. They will likely have their own set of health and social care needs, may have their own caregiver(s) or be in a mutually caring relationship with the person for whom they care (Morgan et al, 2020).…”