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Open Access Research article

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

Christine Stirling12*, Susan Leggett1, Barbara Lloyd1, Jenn Scott3, Leigh Blizzard4, Stephen Quinn5 and Andrew Robinson12

Author Affiliations

1 Wicking Dementia Research and Education Centre, Menzies Research Institute, University of Tasmania, Private Bag 121, Hobart, TAS, Australia 7000

2 School of Nursing and Midwifery, University of Tasmania, 24 Campbell St, Tasmania, Australia

3 School of Psychology, University of Tasmania, Sandy Bay Campus, Tasmania, Australia

4 Menzies Research Institute, University of Tasmania, 17 Liverpool St, Hobart, Australia

5 Flinders Clinical Effectiveness, Flinders University, Adelaide, Australia

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BMC Medical Informatics and Decision Making 2012, 12:21  doi:10.1186/1472-6947-12-21

Published: 19 March 2012

Abstract

Background

Decision aids are often used to assist individuals confronted with a diagnosis of a serious illness to make decisions about treatment options. However, they are rarely utilised to help those with chronic or age related conditions to make decisions about care services. Decision aids should also be useful for carers of people with decreased decisional capacity. These carers' choices must balance health outcomes for themselves and for salient others with relational and value-based concerns, while relying on information from health professionals. This paper reports on a study that both developed and pilot tested a decision aid aimed at assisting carers to make evaluative judgements of community services, particularly respite care.

Methods

A mixed method sequential study, involving qualitative development and a pilot randomised controlled trial, was conducted in Tasmania, Australia. We undertook 13 semi-structured interviews and three focus groups to inform the development of the decision aid. For the randomised control trial we randomly assigned 31 carers of people with dementia to either receive the service decision aid at the start or end of the study. The primary outcome was measured by comparing the difference in carer burden between the two groups three months after the intervention group received the decision aid. Pilot data was collected from carers using interviewer-administered questionnaires at the commencement of the project, two weeks and 12 weeks later.

Results

The qualitative data strongly suggest that the intervention provides carers with needed decision support. Most carers felt that the decision aid was useful. The trial data demonstrated that, using the mean change between baseline and three month follow-up, the intervention group had less increase in burden, a decrease in decisional conflict and increased knowledge compared to control group participants.

Conclusions

While these results must be interpreted with caution due to the small sample size, all intervention results trend in a direction that is beneficial for carers and their decisional ability. Mixed method data suggest the decision aid provides decisional support that carers do not otherwise receive. Decision aids may prove useful in a community health services context.

Trial registration number

ISRCTN: ISRCTN32163031

Keywords:
Decisional conflict; Decision aid; Dementia; Carer; Community services; Randomised-control trial; Qualitative