Literature DB >> 11328438

How do we facilitate carers' involvement in decision making?

E Walker1, B J Dewar.   

Abstract

BACKGROUND: Government health care policy urges service providers to involve service users in the decision-making process. Research studies have recommended changes to current health care practice to facilitate this involvement. However, carers' organizations continue to highlight a gap between policy and practice in relation to involvement. AIM: The aim of the study reported on in this paper was to investigate involvement in a specific health care context with a view to identifying both opportunities for change and practical, realistic ways of bringing about that change. This was a qualitative case study using a case study design. The field site selected was a respite and assessment (23 bedded) ward within the Psychiatric Unit of a hospital specializing in the care of older people. Informal carers (n=20) and members of the multidisciplinary team (n=29) were interviewed about their views and experiences. The interviews were audiorecorded and transcribed. Family meetings, multidisciplinary team meetings and ward routines were the focus of non-participant observation. Field notes from these observations, together with the interview data were analysed using constant comparative method. RESULTS AND
CONCLUSIONS: 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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Year:  2001        PMID: 11328438     DOI: 10.1046/j.1365-2648.2001.01762.x

Source DB:  PubMed          Journal:  J Adv Nurs        ISSN: 0309-2402            Impact factor:   3.187


  11 in total

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Review 2.  Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives.

Authors:  A Simon Pickard; Sara J Knight
Journal:  Med Care       Date:  2005-05       Impact factor: 2.983

3.  Family Inclusion in Mental Health Service Planning and Delivery: Consumers' Perspectives.

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Journal:  Community Ment Health J       Date:  2018-07-07

4.  The role of relatives in discharge planning from psychiatric hospitals: the perspective of patients and their relatives.

Authors:  Michel Perreault; Hélène Tardif; Hélène Provencher; Geneviève Paquin; Julie Desmarais; Nicole Pawliuk
Journal:  Psychiatr Q       Date:  2005

5.  A qualitative study of professional and client perspectives on information flows and decision aid use.

Authors:  Christine Stirling; Barbara Lloyd; Jenn Scott; Jenny Abbey; Toby Croft; Andrew Robinson
Journal:  BMC Med Inform Decis Mak       Date:  2012-03-29       Impact factor: 2.796

6.  The impact of interactions with providers on stroke caregivers' needs.

Authors:  Kerry Rae Creasy; Barbara J Lutz; Mary Ellen Young; Ariel Ford; Crystal Martz
Journal:  Rehabil Nurs       Date:  2013 Mar-Apr       Impact factor: 1.625

7.  Decision aids for respite service choices by carers of people with dementia: development and pilot RCT.

Authors:  Christine Stirling; Susan Leggett; Barbara Lloyd; Jenn Scott; Leigh Blizzard; Stephen Quinn; Andrew Robinson
Journal:  BMC Med Inform Decis Mak       Date:  2012-03-19       Impact factor: 2.796

8.  Alzheimer's patients' spouses critiques of the support services.

Authors:  Minna M Raivio; Marja-Liisa Laakkonen; Kaisu H Pitkälä
Journal:  ISRN Nurs       Date:  2011-06-08

9.  A model and typology of collaboration between professionals in healthcare organizations.

Authors:  Danielle D'Amour; Lise Goulet; Jean-François Labadie; Leticia San Martín-Rodriguez; Raynald Pineault
Journal:  BMC Health Serv Res       Date:  2008-09-21       Impact factor: 2.655

10.  Measuring next of kin's experience of participation in the care of older people in nursing homes.

Authors:  Albert Westergren; Lina Behm; Tove Lindhardt; Magnus Persson; Gerd Ahlström
Journal:  PLoS One       Date:  2020-01-31       Impact factor: 3.240

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