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患有多种长期疾病的成年人的社会关系体验:一项定性访谈研究

Experiences of Social Relationships for Adults Living With Multiple Long-Term Conditions: A Qualitative Interview Study.

作者信息

Hounkpatin Hilda, Morrison Leanne, Richards Al, Santer Miriam

机构信息

Primary Care Research Centre, School of Primary Care, Population Sciences and Medical Education, University of Southampton, Southampton, Hampshire, UK.

出版信息

Health Expect. 2025 Oct;28(5):e70335. doi: 10.1111/hex.70335.

Abstract

BACKGROUND

Social relationships are important for self-management and outcomes of multiple long-term conditions (MLTC). Previous research indicates MLTC negatively impacts social relationships and people living with MLTC do not feel adequately supported to manage their health. However, there is limited understanding of the processes and contextual factors that influence social relationships in the context of MLTC. This study explored experiences of social relationships for adults living with MLTC to improve understanding of their social relationship needs.

METHODS

Semi-structured telephone interviews were conducted with 22 people living with MLTC in Southern England. Participants were recruited through charity networks and GP practices. Eligibility criteria were: individuals aged ≥ 45 years living with MLTC within the community. Participants were purposively sampled to include diverse characteristics in terms of age, gender, and residential area deprivation. Transcribed interview data were analysed using reflexive thematic analysis.

RESULTS

Four themes were developed. 'There is no single route to meaningful social connection' reflected how participants achieved, valued, and maintained meaning in relationships in diverse ways. 'Change in sense of self' captured the mental load, nostalgia, low mood and depressive symptoms experienced because of MLTC, which was reported to negatively impact their relationships with others. 'A need to be seen and understood' described how participants valued social relationships that enabled them to talk about their conditions with others who have shared experiences. Participants experienced a sense of abandonment when they felt unable to share their needs and experiences with family and close friends. Some participants experienced distress around the need to self-manage their health, which was reinforced by limited health and care services. 'Altered interaction' reflected how MLTC required participants to find new ways to maintain social connection.

CONCLUSION

Meaningful connection may be achieved through diverse social relationships, including acquaintances and support groups. Further efforts to connect people to these forms of relationships could improve self-management of MLTC, though strategies may vary for adults with different characteristics and health needs. Interventions that target mental burden, nostalgia, low mood and depressive symptoms experienced because of MLTC could support appropriate and meaningful social connection. Further research is needed to test these relationships.

PATIENT AND PUBLIC CONTRIBUTION

Three public contributors shaped the design of this study by sharing their experiences and views of key issues people who lack adequate social support may experience and how this might impact management of their health. They noted the importance of speaking to a range of people to understand social relationship needs of people living with MLTC, as experiences will vary. Two public contributors reviewed and helped refine the interview topic guide and commented on the importance of tone when conducting interviews, to encourage participants to share their experiences. One public contributor supported analysis of the transcripts through coding, discussion, and manuscript review. They highlighted the abandonment expressed by participants and how participants appeared to want to be seen as independent despite wanting and needing more support.

TRIAL REGISTRATION

None.

摘要

背景

社会关系对于多种慢性病(MLTC)的自我管理及预后非常重要。先前的研究表明,多种慢性病会对社会关系产生负面影响,患有多种慢性病的人在管理自身健康方面并未得到足够的支持。然而,对于在多种慢性病背景下影响社会关系的过程和背景因素,我们的了解有限。本研究探讨了患有多种慢性病的成年人的社会关系体验,以增进对他们社会关系需求的理解。

方法

对英格兰南部22名患有多种慢性病的人进行了半结构化电话访谈。参与者通过慈善网络和全科医生诊所招募。纳入标准为:年龄≥45岁、在社区中患有多种慢性病的个体。参与者按目的抽样,以纳入年龄、性别和居住地区贫困程度等方面具有不同特征的人群。对转录的访谈数据采用反思性主题分析法进行分析。

结果

形成了四个主题。“通往有意义的社会联系没有单一途径”反映了参与者如何以不同方式在人际关系中实现、重视和维持意义。“自我认知的改变”描述了由于多种慢性病而经历的心理负担、怀旧情绪、情绪低落和抑郁症状,据报告这些会对他们与他人的关系产生负面影响。“被看见和被理解的需求”描述了参与者如何重视那些能让他们与有共同经历的人谈论自身病情的社会关系。当参与者感到无法与家人和亲密朋友分享自己的需求和经历时,他们会有被抛弃的感觉。一些参与者在自我管理健康的需求方面感到困扰,有限的健康和护理服务加剧了这种困扰。“互动的改变”反映了多种慢性病如何要求参与者寻找新的方式来维持社会联系。

结论

通过包括熟人关系和支持小组在内的多种社会关系,可能实现有意义的联系。进一步努力将人们与这些关系形式联系起来,可以改善多种慢性病的自我管理,不过针对具有不同特征和健康需求的成年人,策略可能会有所不同。针对因多种慢性病而产生的心理负担、怀旧情绪、情绪低落和抑郁症状的干预措施,可以支持建立适当且有意义的社会联系。需要进一步研究来验证这些关系。

患者及公众参与

三位公众参与者通过分享他们对缺乏足够社会支持的人可能经历的关键问题的体验和看法,以及这可能如何影响他们的健康管理,对本研究的设计产生了影响。他们指出与一系列人群交谈以了解患有多种慢性病的人的社会关系需求的重要性,因为体验会因人而异。两位公众参与者审查并帮助完善了访谈主题指南,并评论了访谈时语气的重要性,以鼓励参与者分享他们的经历。一位公众参与者通过编码、讨论和稿件审查支持了对访谈记录的分析。他们强调了参与者表达的被抛弃感,以及尽管参与者想要并需要更多支持,但他们似乎希望被视为独立个体的情况。

试验注册

无。

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