Identified needs to enhance life for people with spinal cord injury: a part of the Swedish Needs Assessment Project

To identify factors that contribute to the enhanced life of people with spinal cord injury (SCI) in Sweden. This cross-sectional study combined workshops (<i>n</i> = 38) and survey data (<i>n</i> = 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. This paper reports needs that contribute to an enhanced life for people living with spinal cord injury in Sweden.The factors that contribute to an enhanced life are multifaceted and individual, and these must be considered throughout the entire life span, including getting help if secondary complications arise, aging and other life events.Individuals’ willingness to take ownership is strong but requires support from the surrounding systems that can accommodate individual’s unique needs.The exosystem (ea health care) plays a major role but risk to obtrude and minimize the mesosystem (individual’s immediate relations).Positive attitudes toward oneself, from family members and loved ones, from health care professionals and authorities are crucial for an enhanced life. This paper reports needs that contribute to an enhanced life for people living with spinal cord injury in Sweden. The factors that contribute to an enhanced life are multifaceted and individual, and these must be considered throughout the entire life span, including getting help if secondary complications arise, aging and other life events. Individuals’ willingness to take ownership is strong but requires support from the surrounding systems that can accommodate individual’s unique needs. The exosystem (ea health care) plays a major role but risk to obtrude and minimize the mesosystem (individual’s immediate relations). Positive attitudes toward oneself, from family members and loved ones, from health care professionals and authorities are crucial for an enhanced life.

本研究旨在明确瑞典脊髓损伤（spinal cord injury, SCI）人群提升生活质量的影响因素。本项横断面研究整合了针对瑞典脊髓损伤患者及其家属、医疗专业人员以及脊髓损伤照护护工开展的38场工作坊（n=38）与243份调查问卷数据（n=243）。研究首先采用布朗芬布伦纳生物生态模型（Bronfenbrenner’s bioecological model）对数据进行分类，随后开展常规内容分析。

脊髓损伤患者提升生活质量的影响因素与普通人群高度相似，涵盖中间系统（mesosystem）内的人际关系、休闲活动与职业参与。但外系统（exosystem）与宏观系统（macrosystem）的独特组成则与脊髓损伤人群存在特异性关联。外系统尤其是医疗照护体系，出于医疗相关考量发挥着核心作用，但也容易出现干预过度、挤压中间系统生存空间的情况。宏观系统至关重要，其制定的规则统领其他层级系统，为满足中间系统与外系统的需求奠定基础。

提升生活质量所需的需求兼具多面性与个体差异性，因此上述系统需在脊髓损伤患者的整个生命周期中保持灵活性。本研究报告了瑞典脊髓损伤患者优化生活质量的相关需求：影响生活质量提升的因素兼具多面性与个体差异性，需贯穿患者整个生命周期加以考量，包括继发性并发症出现时的救助需求、衰老相关问题及其他人生事件的应对需求。患者拥有自主掌控的意愿较强，但需要周边系统提供可适配其个性化需求的支持。外系统（例如医疗照护体系）发挥着核心作用，但存在干预过度、挤压个体直接亲属关系构成的中间系统空间的风险。来自自身、家人与挚爱亲朋、医疗专业人员及管理部门的积极态度，对提升患者生活质量至关重要。