Decision aids for respite service choices by carers of people with dementia: development and pilot RCT
Stirling, C and Leggett, S and Lloyd, B and Scott, J and Blizzard, L and Quinn, S and Robinson, A, Decision aids for respite service choices by carers of people with dementia: development and pilot RCT, BMC Medical Information and Decision Making, 12, (21) pp. 1-9. ISSN 1472-6947 (2012) [Refereed Article]
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 intervieweradministered
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.