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

BMC Medical Informatics and Decision Making

Research Article

Stephen Quinn¹  Leigh Blizzard²  Jenn Scott³  Susan Leggett⁴  Barbara Lloyd⁴  Christine Stirling⁵  Andrew Robinson⁵ 

[1] Flinders Clinical Effectiveness, Flinders University, Adelaide, Australia;Menzies Research Institute, University of Tasmania, 17 Liverpool St, Hobart, Australia;School of Psychology, University of Tasmania, Sandy Bay Campus, Tasmania, Australia;Wicking Dementia Research and Education Centre, Menzies Research Institute, University of Tasmania, Private Bag 121, 7000, Hobart, TAS, Australia;Wicking Dementia Research and Education Centre, Menzies Research Institute, University of Tasmania, Private Bag 121, 7000, Hobart, TAS, Australia;School of Nursing and Midwifery, University of Tasmania, 24 Campbell St, Tasmania, Australia;

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

DOI  :  10.1186/1472-6947-12-21

 received in 2011-08-23, accepted in 2012-03-19,  发布年份 2012

来源: Springer

【 摘 要 】

BackgroundDecision 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.MethodsA 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.ResultsThe 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.ConclusionsWhile 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 numberISRCTN: ISRCTN32163031

【 授权许可】

CC BY   
© Stirling et al; licensee BioMed Central Ltd. 2012