Medical Management Center, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
Medical Management Center, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
Soc Sci Med. 2022 Jan;292:114575. doi: 10.1016/j.socscimed.2021.114575. Epub 2021 Nov 18.
Brain tumor is a severe cancer that may make the person with the illness and their informal caregivers dependent on support in self-care. Social network mapping is a method to assess an individual's social relations and resources, which may help to identify high-quality relations and potential sources of support. Yet, which relations matter for individuals living with brain tumors and their informal caregivers and how social network mapping could be used in self-care need further investigation.
To explore how persons living with brain tumors and informal caregivers perceive the potential usefulness of a social network-mapping tool in their self-care and to describe the qualities in the interpersonal relations that they map.
Seven persons living with brain tumors and 12 informal caregivers (whereof six bereaved) participated in in-depth interviews and tested a social network-mapping tool developed by an informal caregiver (CareMaps). Data were analyzed inductively using thematic analysis. The COREQ checklist was used for reporting.
Participants expressed positive opinions about the CareMaps tool but raised some questions regarding its design, how to use it in their self-care, and the optimal timing of introducing the tool. Two themes reflecting qualities in relations were found: self-care supportive relations during which daily management of the brain tumor is in focus and identity-preserving relations that allow individuals to disconnect from their brain tumor experiences. Both types of relations were described as important, were found in different contexts (e.g., social life, work life, and healthcare), and emphasized contrasting qualities.
The CareMaps tool was helpful in elucidating qualities in interpersonal relations that contribute to individuals' self-care. Future research should investigate how social network-mapping tools that capture quality in social relations should be designed and used to support individuals in their self-care.
脑肿瘤是一种严重的癌症，可能使患者及其非专业照护者依赖于自我护理的支持。社会网络映射是一种评估个体社会关系和资源的方法，它可以帮助识别高质量的关系和潜在的支持来源。然而，对于患有脑肿瘤的个体及其非专业照护者来说，哪些关系重要，以及社会网络映射如何用于自我护理，还需要进一步研究。
探讨脑肿瘤患者及其非专业照护者如何看待社会网络映射工具在自我护理中的潜在有用性，并描述他们所映射的人际关系中的特质。
7 名脑肿瘤患者和 12 名非专业照护者（其中 6 名丧亲者）参与了深入访谈，并测试了由一名非专业照护者（CareMaps）开发的社会网络映射工具。数据采用主题分析进行归纳分析。使用 COREQ 清单报告。
参与者对 CareMaps 工具表示了积极的看法，但对其设计、如何在自我护理中使用以及引入工具的最佳时间提出了一些问题。发现了反映关系特质的两个主题：关注脑肿瘤日常管理的自我护理支持关系和允许个体与脑肿瘤经历脱钩的身份保护关系。这两种关系都被描述为重要的，存在于不同的情境中（例如，社交生活、工作生活和医疗保健），并强调了不同的特质。
CareMaps 工具有助于阐明有助于个体自我护理的人际关系特质。未来的研究应该调查如何设计和使用捕捉社会关系质量的社会网络映射工具来支持个体的自我护理。
