What do stroke survivors think about evidence based care they receive? Learning from insights at the periphery

Abstract

Rationale and aim of study: While exploring the experience of stroke survivors of secondary stroke prevention as part of a wider patient and public involvement service initiative, study participants willingly shared insights on other aspects of care that mattered to them. This is important as little is known about patients’ preferences for care. Methods: Data was generated from focus groups and semi-structured interviews that were held with 38 stroke survivors or their proxy respondents as part of an action research study. A framework analysis was used to examine data. Results: Our findings largely support current knowledge about the benefits of receiving evidence based stroke care. Although patients broadly appreciated being on a specialist unit, unexpectedly and contrary to best practice some expressed the wish to be treated elsewhere as they found the experience of being on a stroke unit difficult. Other findings included the need for more local peer support and difficulties surrounding transfer from hospital to home. Resultant actions included awareness training for staff about sensitively managing people’s perceptions about being on the stroke unit; development of shared computer based (IT) resources, and the establishment of a volunteer peer support system. Conclusion: The evidence base for the benefits of stroke unit care is unequivocal; however this model of care presents challenges for some. Involving patients in service development can inform small but key changes in practice that can help address inherent tensions in delivering evidence based services that are sensitive to patient preference.