a Faculty of Health, Social Care and Education , Kingston University and St. George's, University of London , London , UK.
b Bridges Self-Management Limited , London , UK.
Disabil Rehabil. 2019 Jun;41(11):1296-1306. doi: 10.1080/09638288.2018.1424953. Epub 2018 Jan 11.
There is increasing interest in tailoring self-management support, but little detail is available on the relevance and impact of such approaches for people with progressive neurological conditions. The aim of this study was to draw on individuals' experiences to inform the practice of self-management support for these groups.
Community rehabilitation service users were purposively recruited and took part in in-depth qualitative interviews. Interviews were audio-recorded and transcribed. Data analysis was iterative and interpretative, taking a phenomenological approach. Strategies to enhance rigor were auditability, peer review, and researcher reflexivity.
The sample consisted of 10 adults (age 20-79 years) who were living with a range of progressive neurological conditions. Individuals demonstrated resourcefulness in developing practice-based self-management strategies. Beyond practical strategies, interviewees' experiences were signified by reflecting on and upholding a sense of identity and a desire for purpose against the background of losses and gains over time. Linking with this overarching theme of "Sense of self" were aspects of "My body and mind", "Time", "Space", "Relationships", and "What I do".
Self-management approaches for individuals with progressive neurological conditions will benefit from incorporating ways of recognizing, articulating, and supporting the person's sense of identity and purpose. Implications for rehabilitation Self-management approaches for people with progressive neurological conditions need to take account of individuals' wishes to contribute, connect with others, and be valued as a person. Person-centred self-management support can be realized through a broader approach than solely managing disease progression. The experiences and words of people with progressive neurological conditions can be used to inform meaningful evaluation of self-management support to drive service delivery by measuring what really matters. Rehabilitation practitioners need to adapt their conceptualisations of goal setting to account for how people with progressive neurological conditions themselves interpret "progress" and "improvement". Person-centred conversation that values who the person is can be an effective starting point for self-management interventions in people with progressive neurological conditions.
人们对量身定制自我管理支持越来越感兴趣，但对于这种方法对于进行性神经疾病患者的相关性和影响，知之甚少。本研究旨在借鉴个体经验，为这一群体提供自我管理支持实践。
社区康复服务使用者被有目的地招募，并参与深入的定性访谈。访谈进行了录音和转录。数据分析是迭代和解释性的，采用现象学方法。增强严谨性的策略包括可审计性、同行评审和研究人员的反思。
样本由 10 名成年人（年龄 20-79 岁）组成，他们患有各种进行性神经疾病。个体在制定基于实践的自我管理策略方面表现出了足智多谋。除了实际策略外，受访者的经验还体现在反思和坚持身份感以及对目的的渴望上，而这些都是在随着时间的推移而不断得失的背景下发生的。与这一主题相关的是“自我感”，具体包括“我的身心”、“时间”、“空间”、“人际关系”和“我所做的”。
针对进行性神经疾病患者的自我管理方法将受益于纳入识别、表达和支持个人身份感和目标感的方法。对康复的启示：针对进行性神经疾病患者的自我管理方法需要考虑到患者有意愿做出贡献、与他人建立联系并被视为有价值的人。以患者为中心的自我管理支持可以通过比单纯管理疾病进展更广泛的方法来实现。进行性神经疾病患者的经验和言语可以用于告知自我管理支持的有意义评估，从而通过衡量真正重要的内容来推动服务交付。康复从业者需要调整他们的目标设定概念，以考虑进行性神经疾病患者自身如何解释“进展”和“改善”。重视个体本身的以患者为中心的对话可以成为进行性神经疾病患者自我管理干预的有效起点。
