Families and hospitalized elders: A typology of family care actions

Li, Hong; Stewart, Barbara J.; Imle, Margaret A.; Archbold, Patricia G.; Felver, Linda

doi:10.1002/(sici)1098-240x(200002)23:1<3::aid-nur2>3.3.co;2-l

Cited by 22 publications

(38 citation statements)

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“…34,35 The time spent with physicians and other care staff and discussion with these staff was also a key area impacting upon the effective involvement of family surrogates identified in the qualitative component of this review, the results of which are reported elsewhere. 15 The review findings also affected by increased information to assist decision making; 27 however, one study found less decisional conflict for those using a decision aid.…”

Section: Discussionmentioning

confidence: 99%

Family involvement in decision making for people with dementia in residential aged care

Petriwskyj

Gibson

Parker

et al. 2014

International Journal of Evidence-Based Healthcare

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Aim. Ensuring older adults' involvement in their care is accepted as good practice and is vital, particularly for people with dementia, whose care and treatment needs change considerably over the course of the illness. However, involving family members in decision making on people's behalf is still practically difficult for staff and family. The aim of this review was to identify and appraise the existing quantitative evidence about family involvement in decision making for people with dementia living in residential aged care.Methods. This Joanna Briggs Institute (JBI) meta-synthesis assessed studies that investigated involvement of family members in decision making for people with dementia in residential aged care settings. Whilst quantitative and qualitative studies were included in the review, this paper presents the quantitative findings. A comprehensive search of 15 electronic databases was performed. The search was limited to papers published in English, from 1990 to 2013. Twenty six studies were identified as being relevant; ten were quantitative, with one mixed-method study. Two independent reviewers assessed the studies for methodological validity and extracted the data using the JBI Meta Analysis of Statistics Assessment and Review Instrument (JBIMAStARI). The findings were synthesised and presented in narrative form. Conclusions.The results identified patterns within and variables associated with surrogate decision making, which all highlight the complexity and variation regarding family involvement.Attention needs to be paid to supporting family members in decision making in collaboration with staff. Word count: 269Keywords: decision making; dementia; family; residential aged care; systematic review Care Home Minimum Standards make frequent reference to "residents and their representatives" being informed, consulted, and involved in decision making and care planning, among other decisions in the facility. 8,9 In the United States, the Federal Requirements for Long Term Care Facilities 9 commonly makes reference to "the resident or their representative", the "legal representative", or "family member" in regard to information, consent, and care planning. Other countries similarly, both implicitly and explicitly, refer to representatives, including family, being informed and involved in planning and decision making. However, the enactment of these standards is not consistent across contexts.There have also been attempts to develop best practice approaches to involving family members in the care of older people in residential care. In Australia, for example, participation of family members in the care of older people is also highlighted in the Palliative ApproachGuidelines for RAC and Community. 10,11 Further, the recent development of consumer focused documents in Australia which highlight the role of family members and proxy decision makers in contributing to care decisions for planning for end of life with dementia is a good example of the growing policy context which supports the involvemen...

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Section: Discussionmentioning

confidence: 99%

Family involvement in decision making for people with dementia in residential aged care

Petriwskyj

Gibson

Parker

et al. 2014

International Journal of Evidence-Based Healthcare

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“…70 Conversely, there are some family members who may not wish to, and indeed should not be encouraged to become carers. 43 Exercising a choice not to care is, however, increasingly difficult due to the strong moral imperative to care, the implicit pressure that professionals often place on family carers, 64 the increasingly rapid throughput from hospital settings [71][72] and carers' lack of knowledge of alternative arrangements. 68 As Wood and Watson 64 note, some family members need active support in their decision not to care.…”

Section: Working With Family Carers: the Reality Behind The Rhetoricmentioning

confidence: 99%

“…78 This rarely happens as relatively little thought has been given to the role of families in hospital, other than as visitors and occasional helpers, 72,79 but there is evidence to suggest that an experienced and expert carer can be threatening to some professionals. 79 Allen 79 argues that because both professionals and carers claim to possess expert knowledge of the patients' needs, tensions can arise.…”

Section: The Goals and Purpose Of Carer Supportmentioning

confidence: 99%

Working with family carers: towards a partnership approach

Nolan

2001

Rev. Clin. Gerontol.

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The use of the term ‘family (informal) carer’, as it is currently conceptualized, is recent and is largely the product of increased attention in the academic and policy literature over the last two decades. Despite their fairly late arrival on the scene, family carers now occupy centre stage in UK government policy, having being described by the Prime Minister, Tony Blair, as the ‘unsung heroes’ of British life, who are essential to the fabric and character of Britain. Such recognition stems from the growing realization that family carers are the lynchpin of community care, providing 80% of all the care needed at an estimated saving to the UK government of some £40 billion annually.

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“…Allen (2000) observes that for nursing staff, using the expertise of carers in order to ‘get to know the person’ can undermine their professional identities. Secondly, it is difficult for carers to negotiate an active role in a hospital environment that is both alien to them and weighted in favour of service providers (Laitinen 1992, Allen 2000, Li et al . 2000).…”

Section: Introductionmentioning

confidence: 99%

How do we facilitate carers’ involvement in decision making?

Walker¹,

Dewar

2001

Journal of Advanced Nursing

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The reported experiences of carers in this study highlighted four markers of satisfactory involvement: feeling that information is shared; feeling included in decision making; feeling that there is someone you can contact when you need to; and feeling that the service is responsive to your needs. The majority of carers felt dissatisfied with the level of involvement. The situation we found echoed that found in other studies, i.e. the majority of informal carers (henceforth 'carers') interviewed were dissatisfied with the level of their involvement. However, our investigation, in which the views of health care professionals as well as those of carers were sought, provided invaluable insight into why this might be the case. Two main sources of difficulty were found: hospital systems and processes, and the relationship between nursing staff and carers. The argument made is that practitioners themselves must notice and challenge these barriers if carer involvement is to be facilitated.

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Families and hospitalized elders: A typology of family care actions

Cited by 22 publications

References 0 publications

Family involvement in decision making for people with dementia in residential aged care

Family involvement in decision making for people with dementia in residential aged care

Working with family carers: towards a partnership approach

How do we facilitate carers’ involvement in decision making?

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