The interrelated process of becoming independent in user participation for young persons living with disabilities

Purpose: User participation is important in the delivery of health- and social services. Yet, our knowledge regarding how user participation is experienced from the perspective of those who use these services is limited. This study aims to develop knowledge regarding how young persons living with disabilities experience becoming independent in user participation.

Materials and methods: This qualitative study is inspired by Constructivist Grounded Theory. Nine young persons between 16 and 25 years of age and living with a disability, participated in the interviews.

Results: The results revealed that user participation for young persons is a socially situated, relational, and skills-dependent process. User participation is characterized as a process, consisting of increasing skills, gradually reducing parental support, and responding to interactions with professionals. The three categories are strongly reciprocal and interrelated, forming the unifying core category of Striving towards independence in user participation.

Conclusion: We theorize about the Interrelated process of becoming independent in user participation for young persons with disabilities. This theory highlights the need to understand the interrelatedness of user participation, allowing for a recognition of the complexity of user participation, showing it as a process involving developing skills, and gradually becoming independent and skilled in user participation.Implications for rehabilitationYoung persons with disability rely on support from parents as well as professionals to become independent in user participationProfessionals should acknowledge that user participation is a learning process and allow for time and resources to aid this processFocusing on increasing health literacy alone is not sufficient to ensure user participation for young persons with disability.