Contextualizing the findings of a systematic review on patient and carer experiences of dementia diagnosis and treatment: a qualitative study

BACKGROUND Involving service users in the systematic review process is seen as increasingly important. As systematic reviews often include studies from diverse settings and covering a time span of several decades, involving service users in consideration of applicability to specific populations or settings might make reviews more useful to practitioners and policymakers. OBJECTIVES To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia. METHODS Results from the systematic review were discussed in focus groups and semi-structured interviews with patient, public and professional participants in the South East of England. Analysis was guided by coding frameworks developed from the results of the systematic review. PARTICIPANTS We recruited 27 participants, including three people with dementia, 12 carers, six service providers and five older people without dementia. RESULTS Findings from the focus groups and interviews were consistent with those from the systematic review and suggest that our review findings were applicable to the local setting. We found some evidence that access to information and diagnostic services had improved but, as in the systematic review, post-diagnosis support was still often experienced as inadequate. CONCLUSIONS Focus groups and interviews with service users and their representatives can provide useful contextual information. However, such strategies can require considerable investment of the part of the researcher in terms of time and resources, and more work is needed to refine strategies and establish the benefits for patients and the organization of services.