Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients

<b>Purpose</b><b>:</b> Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community. <b>Methods:</b> A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (<i>n</i> = 19) and their family members’ (<i>n</i> = 16) experiences. <b>Results:</b> The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness. <b>Conclusions:</b> The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators.Implications for RehabilitationFamily caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community.The potential negative effects of caregiving could threaten the sustainability of these critical supports.Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role.This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role. Family caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community. The potential negative effects of caregiving could threaten the sustainability of these critical supports. Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.

<b>研究目的</b><b>：</b>家庭成员对脊髓损伤（spinal cord injury）患者的非正式与正式照护，以及其整体健康与福祉均具有重要贡献。照护工作往往会带来负面结果，若未妥善处理，将危及这类关键支持的可持续性。本研究旨在探讨脊髓损伤患者及其家庭照护者，对于社区中开展并维持照护角色的促进因素与阻碍因素的认知。<b>研究方法</b><b>：</b>采用半结构化访谈的质性描述性研究方法，通过主题分析法提炼脊髓损伤患者（<i>n</i> = 19）及其家庭成员（<i>n</i> = 16）的相关体验所衍生的核心主题。<b>研究结果</b><b>：</b>本研究共识别出4项照护促进因素：社区支持服务可及性、关系中的积极应对、社会支持，以及照护角色掌控能力。与之相对，共识别出6项照护阻碍因素：社区资源可及性不足、对相关资源与正式培训的知识匮乏、照护服务连续性碎片化、关系中的消极应对、角色紧张，以及照护者自身受伤或患病。<b>研究结论</b><b>：</b>本研究表明，积极应对、社会支持、技能培训、社区服务可及性以及照护连续性，对脊髓损伤家庭照护角色的可持续性具有显著促进作用。因此，未来照护者干预方案的开发应纳入上述促进因素。<b>康复领域启示</b><b>：</b>家庭照护者对脊髓损伤患者出院至社区后的照护流程与整体生活质量均有重要贡献。照护工作潜在的负面影响可能危及这类关键支持的可持续性。积极应对、社会支持、技能培训、社区服务可及性以及照护连续性，对脊髓损伤家庭照护角色的可持续性具有显著促进作用。本研究显示，在康复与出院流程中需更好地整合家庭成员的参与，以帮助其更好地胜任照护角色。家庭照护者对脊髓损伤患者出院至社区后的照护流程与整体生活质量均有重要贡献。照护工作潜在的负面影响可能危及这类关键支持的可持续性。积极应对、社会支持、技能培训、社区服务可及性以及照护连续性，对脊髓损伤家庭照护角色的可持续性具有显著促进作用。本研究显示，在康复与出院流程中需更好地整合家庭成员的参与，以帮助其更好地胜任照护角色。