Users' Perspectives on the Organization of Rehabilitation Services – A Focus Group Study of User Organization Representatives in Norway

Abstract

Background: User organizations for people with disabilities in Norway work for social equality and participation, and quality of health services for people with disabilities, chronic illnesses and reduced functional capacity. Consideration of the experiences from user representatives is necessary when determining the quality and appropriateness of the rehabilitation services. Rehabilitation services constitute the provision and delivery of intangible products to maintain or improve functioning in individual patients or patient groups. Rehabilitation services can be characterized at the policy (macro), organizational (meso) and individual (micro) levels.

Objectives: To explore user representatives' perspectives on rehabilitation service provision and organization and how they experience the influence they exert.

Methods: Focus group interviews with 14 representatives nominated from 11 user organizations in Norway conducted in 2021. Two online focus groups using a semi‐structured interview guide were conducted. Data analysis was performed according to Braun and Clarke's thematic data analysis.

Results: Six core themes were developed when analyzing the participants' experiences and opinions regarding rehabilitation services. The themes were inter‐connected and addressed perspectives on Access to services, Integration of care, Rehabilitation team, Person centeredness, System and governance and Modes of user representation and contribution.

Conclusion: The user representatives revealed tension and complexity influencing the provision and organization of rehabilitation services from individual access to health policy and regulation. Empowering user representatives through training was important to fight tokenism. Filling the role of a user representative at the meso level requires the integration of personal and peer experiences at the micro level, and knowledge of health policy regulations at the macro level.

Patient or Public Contribution: The Norwegian Federation of Organisations of Persons with Disabilities recruited user representatives in this study. The user representatives participated in the assessment and discussion of the results of the study. The results were presented for discussion to the User panel at the Research Centre for Habilitation and Rehabilitation Models & Services (CHARM) at the University of Oslo.