Patient reported experiences of using community rehabilitation and/or support services whilst living with a long-term neurological condition: a qualitative systematic review and meta-aggregation.

Objectives: To identify patient reported experiences of using community rehabilitation and/or support services whilst living with a long-term neurological condition, and perceptions of their impact on quality of life. Methods: Nine electronic databases were searched for peer-reviewed qualitative studies from 2005-2016, which met the inclusion criteria. Critical appraisal, data extraction and quality assessment of thirty-seven included papers were performed by 3 reviewers. One hundred and one findings were extracted. Meta-aggregation was used to synthesise findings. Findings: Seven ‘synthesised findings’ [SF] were produced: Interactions with some professionals provide active participation, choice, confidence and autonomy [SF1]; Interactions with some professionals are disempowering and depersonalized [SF2]; Effective communication, specialist knowledge and an individualized approach to information provision is needed [SF3]; Indicators of success vary and may not be clear [SF4]; Informal support from family/friends is valued [SF5]; Opportunities for peer support/social interaction is valued [SF6]; Coordination required to ensure continuity during transition to community [SF7]. Conclusion: Patient reported experiences identified common factors associated with process quality (respect, choice, autonomy, information provision, communication) and activities of patient centred care (personalised care, shared decision-making, self-management support) despite heterogeneity of neurological conditions, service configurations and geographical location. These factors impact quality of life.