Wangdell Johanna, Axwalter Emelie, Åhrén Gunilla, Lundgren Nilsson Åsa, Sunnerhagen Katharina S, Melin Jeanette
Gothenburg Competence Centre for Spinal Cord Injury, University of Gothenburg and Sahlgrenska University Hospital, Gothenburg, Sweden.
Department of Hand Surgery, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Disabil Rehabil. 2025 Jun;47(12):3030-3041. doi: 10.1080/09638288.2024.2406982. Epub 2024 Oct 2.
To identify factors that contribute to the enhanced life of people with spinal cord injury (SCI) in Sweden.
This cross-sectional study combined workshops ( = 38) and survey data ( = 243) from people living with SCI and their relatives, health professionals, and personal care assistants working with people living with SCI. The data were first categorized using Bronfenbrenner's bioecological model, followed by a conventional content analysis.
The factors that contribute to an enhanced life for people living with SCI are similar to those of the general population, including relationships, leisure activities, and occupation within the mesosystem. However, the unique components of the exosystem and macrosystem are specifically associated with people living with SCI. The exosystem, particularly in healthcare, plays a major role for medical reasons but also tends to obtrude and minimize the mesosystem. The macrosystem is essential, as it sets the rules that govern the actors in the other layers, creating prerequisites for meeting the needs of the mesosystem and exosystem.
The needs that contribute to an enhanced life are multifaceted and individualized. Therefore, these systems must be flexible throughout the lifespan of individuals with SCI.
确定有助于提高瑞典脊髓损伤（SCI）患者生活质量的因素。
这项横断面研究结合了来自SCI患者及其亲属、医疗专业人员以及为SCI患者提供服务的个人护理助理的研讨会（n = 38）和调查数据（n = 243）。数据首先使用布朗芬布伦纳的生物生态模型进行分类，随后进行传统的内容分析。
有助于提高SCI患者生活质量的因素与普通人群相似，包括中观系统中的人际关系、休闲活动和职业。然而，外部系统和宏观系统的独特组成部分与SCI患者密切相关。外部系统，特别是医疗保健领域，出于医疗原因发挥着重要作用，但也往往会干扰并削弱中观系统。宏观系统至关重要，因为它设定了管理其他层次行为者的规则，为满足中观系统和外部系统的需求创造了前提条件。
有助于提高生活质量的需求是多方面且个性化的。因此，这些系统在SCI患者的整个生命周期中必须保持灵活。
