Constituents of effective support for homecare workers providing care to people with dementia at end of life

Yeh, I-Ling; Samsi, Kritika; Vandrevala, Tushna; Manthorpe, Jill

doi:10.1002/gps.5027

Cited by 18 publications

(28 citation statements)

References 32 publications

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“…10, Details of the search results and exclusion of studies can be found in Figure 1. eight qualitative, 34,42,50,51,54,57,59,60 five randomised controlled trials, 29,37,43,47,55 and four evaluation designs. 30,31,33,48 The remaining three studies used mixed-methods 10,41 and quasi-experimental designs.…”

Section: Search Resultsmentioning

confidence: 99%

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Defining end of life in dementia: A systematic review

et al. 2021

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Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

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Section: Search Resultsmentioning

confidence: 99%

“…30–33,47,52,55 Hospice and home settings were the focus only in one study each. 46,59 Two studies were conducted in a combination of care settings, where one study was in home and nursing home settings, 10 and another included hospital and nursing home settings. 56 The care setting did not influence how end of life in dementia was defined.…”

Section: Resultsmentioning

confidence: 99%

Defining end of life in dementia: A systematic review

et al. 2021

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“…This is the first review to explore how observational research can inform our understanding of the experiences and quality of care delivered by home‐care workers. While qualitative interviews and focus group methods have been used frequently to study home care (Barken, Denton, Plenderleith, Zeytinoglu, & Brookman, ; Lovelock & Martin, ; Yeh, Samsi, Vandrevala, & Manthorpe, ), methods of observation have to date been used less widely. From the studies we reviewed, the researchers observed various home‐care practices that were in line with good‐quality care, defined as care that was consistent, and enabled the development of trusting relationships between the home‐care providers and recipients (Cabana & Jee, ; Denton et al, ; Olsson & Ingvad, ; Saultz & Lochner, ).…”

Section: Discussionmentioning

confidence: 99%

“…This is the first review to explore how observational research can inform our understanding of the experiences and quality of care delivered by home-care workers. While qualitative interviews and focus group methods have been used frequently to study home care Lovelock & Martin, 2016;Yeh, Samsi, Vandrevala, & Manthorpe, 2019), methods of observation have to date been used less widely.…”

Section: Discussionmentioning

confidence: 99%

A systematic review of observational studies of adult home care

Leverton

Burton

Rees

et al. 2019

Health Soc Care Community

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The home‐care workforce is in high demand globally. Home‐care workers provide care for people at home, including practical and personal care, as well as other tasks such as medication management. We conducted a systematic review with the aims of understanding methods of observation that have been employed to study home care and to explore how these methods have enabled researchers to understand the quality of home care. We searched the literature using PubMed and CINAHL databases in May 2018, with no limits applied to date of publication. We searched for MeSH terms of ‘Home Care Services’, ‘Home Health Care’, ‘Home Nursing’ and ‘Observation*’. Across 15 eligible studies, the types of observation methods employed were categorised as structured, guided and unstructured. The characteristics of these methods, such as the level of participation adopted by the observer, varied across the studies. Three themes were developed through a narrative synthesis of the included studies’ findings: ‘The impact of care delivery and organisational factors’, ‘Observing relationships and communications’, and ‘People and places behind closed doors’. We conclude that methods of observation are a fairly novel, yet rich and meaningful way of exploring home‐care practice. Researchers undertaking observations should consider elements such as the number of researchers observing and the potential for variations, how and when to record the observations, possible triangulation of data, the researcher's reflective stance as an observer, as well as ethical considerations.

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“…Vandrevala et al , 2016) and the home care industry ( e.g. Yeh et al , 2018). However, the live-in carer's living arrangement of residing in the place of work makes it a different context to allow direct comparison.…”

Section: Introductionmentioning

confidence: 99%

Perceptions and experiences of live-in carers: why acknowledging versus neglecting personal identity matters for job satisfaction and wellbeing

Vandrevala

O’Dwyer

2020

Ageing and Society

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Abstract For some older people and their families, live-in care offers a way of continuing to live independently at home in their local community. While research in the care industry has consistently highlighted the effects of caring on workers, little research has specifically explored the experiences of live-in carers. The current study examines the ways in which live-in carers construct their role, the different challenges they face and the strategies they use to mitigate them. Semi-structured interviews were carried out with 21 live-in carers in the United Kingdom and the data were analysed using thematic analysis. The findings suggest that carers perceive their role as complex and characterised by a heavy workload and tiredness. Participants emphasised the variability which was introduced to the role as a function of the quality of agency support, the character and condition of the client, and the carer's relationships with the client's family. Participants’ accounts reflected an acknowledgement of the need to orient and respond constantly to the needs and routine of the client. While this orientation was recognised as necessary for effectively fulfilling the demands of the role, it was also linked to feelings of dislocation and loss of identity. Drawing on understandings of personal and social identity, the implications of these findings for the psychological wellbeing of live-in carers and organisational support are discussed.

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Constituents of effective support for homecare workers providing care to people with dementia at end of life

Cited by 18 publications

References 32 publications

Defining end of life in dementia: A systematic review

Defining end of life in dementia: A systematic review

A systematic review of observational studies of adult home care

Perceptions and experiences of live-in carers: why acknowledging versus neglecting personal identity matters for job satisfaction and wellbeing

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