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

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.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.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.ISRCTN: ISRCTN32163031Decision Aids (DAs) are intended to help individuals participate in or make health care choices in situations where outcomes may be indeterminate or dependent on values and beliefs [1,2]. Effective DAs have been shown to improve knowledge, reduce indecision, increase decision making involvement and lower decisional conflict [1]. Over 500 aids have been developed globally [1], but these have largely focused on 'rational' screening or treatment choices for cond