A systematic review of decision support needs of parents making child health decisions

Objective To identify the decision support needs of parents attempting to make an informed health decision on behalf of a child. Context The first step towards implementing patient decision support is to assess patients' information and decision-making needs. Search strategy A systematic search of key bibliographic databases for decision support studies was performed in 2005. Reference lists of relevant review articles and key authors were searched. Three relevant journals were hand searched. Inclusion criteria Non-intervention studies containing data on decision support needs of parents making child health decisions. Data extraction and synthesis Data were extracted on study characteristics, decision focus and decision support needs. Studies were quality assessed using a pre-defined set of criteria. Data synthesis used the UK Evidence for Policy and Practice Information and Co-ordinating Centre approach. Main results One-hundred and forty nine studies were included across various child health decisions, settings and study designs. Thematic analysis of decision support needs indicated three key issues: (i) information (including suggestions about the content, delivery, source, timing); (ii) talking to others (including concerns about pressure from others); and (iii) feeling a sense of control over the process that could be influenced by emotionally charged decisions, the consultation process, and structural or service barriers. These were consistent across decision type, study design and whether or not the study focused on informed decision making.