Søberg Helene Lundgaard, Solvang Per Koren, Andelic Nada, Røe Cecilie, Kirkevold Marit
Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway.
Faculty of Health Sciences, Oslo Metropolitan University, OsloMet, Oslo, Norway.
Health Expect. 2024 Dec;27(6):e70139. doi: 10.1111/hex.70139.
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.
To explore user representatives' perspectives on rehabilitation service provision and organization and how they experience the influence they exert.
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.
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.
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.
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.
挪威的残疾人用户组织致力于社会平等与参与，以及为残疾人、慢性病患者和功能能力减退者提供高质量的医疗服务。在确定康复服务的质量和适宜性时，有必要考虑用户代表的经验。康复服务包括提供无形产品，以维持或改善个体患者或患者群体的功能。康复服务可在政策（宏观）、组织（中观）和个体（微观）层面进行描述。
探讨用户代表对康复服务提供和组织的看法，以及他们如何体验自身所发挥的影响。
2021年对从挪威11个用户组织提名的14名代表进行了焦点小组访谈。采用半结构化访谈指南进行了两个在线焦点小组访谈。根据布劳恩和克拉克的主题数据分析方法进行数据分析。
在分析参与者对康复服务的经验和意见时，形成了六个核心主题。这些主题相互关联，涉及服务获取、护理整合、康复团队、以人为本、系统与治理以及用户代表和贡献模式等方面的观点。
用户代表揭示了从个体获取医疗服务到健康政策法规等方面影响康复服务提供和组织的紧张关系和复杂性。通过培训增强用户代表的权能对于抵制形式主义很重要。在中观层面担任用户代表的角色需要整合微观层面的个人和同伴经验，以及宏观层面的健康政策法规知识。
挪威残疾人组织联合会在本研究中招募了用户代表。用户代表参与了研究结果的评估和讨论。研究结果在奥斯陆大学康复与康复模式及服务研究中心（CHARM）的用户小组会议上进行了讨论。
