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

Abstract

Objectives: The objective of this study is 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 to 2016, which met the inclusion criteria. Critical appraisal, data extraction, and quality assessment of 37 included papers were performed by three reviewers. One hundred and one findings were extracted. Meta-aggregation was used to synthesize findings.

Findings: Seven ‘synthesized 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 centered care (personalized care, shared decision-making, self-management support) despite heterogeneity of neurological conditions, service configurations, and geographical location. These factors impact quality of life.

Implications for Rehabilitation

• Patient reported experiences provide useful information about courtesy, respect, choice, autonomy, information provision, and communication.

• Outcomes of self-efficacy and self-management are important for people with stable and progressive long-term neurological conditions.

• Interactions with individual professionals influence engagement, self-efficacy, and self-management for people with long-term neurological conditions.

• Training for health and social care professionals should develop the advanced communication skills and behavior required to facilitate self-efficacy and self-management.

Keywords:

• Community based
• patient centered
• process quality
• self-efficacy
• self-management
• service redesign

Acknowledgements

The authors thank Yvonne Khoo and Lawrence Nyanzi for their assistance in the early stages of the review. The authors also acknowledge the work of the authors included in the studies and are grateful to authors who responded to our requests for information.

Disclosure statement

No potential conflict of interest was reported by the authors.