患有合并症的癌症患者的生存和康复：定性研究洞察社会心理支持需求。
Living With and Beyond Cancer With Comorbid Conditions: Qualitative Insights to Understand Psychosocial Support Needs.
机构信息
Usher Institute, University of Edinburgh, Edinburgh, UK.
Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK.
出版信息
Health Expect. 2024 Oct;27(5):e70039. doi: 10.1111/hex.70039.
INTRODUCTION
There is a pressing need to understand and explore the complex experiences and psychosocial support needs of people LWBC-CM and their informal caregivers, to inform survivorship and supportive care interventions.
METHODS
In-depth qualitative interviews were conducted with people LWBC-CM and their informal caregivers in Scotland, invited via primary care. One-to-one, face-to-face interviews were conducted with informed consent exploring experiences of symptoms, psychosocial support needs and interactions with health services. Interviews were transcribed and analysed using a thematic approach.
RESULTS
Forty-one people LWBC-CM and twenty-three informal caregivers were interviewed. Four themes were identified: the Physical and Psychological Impact of Cancer and Comorbidity, Dominant Storie-Prioritising Conditions and Making Sense of Illness, Navigating Health Services and Treatments and Caring for People with Complex Health Conditions. Type and severity of conditions mediated people's experiences and daily living. Complex fatigue-fatigue arising from a number of health conditions-dominated symptomology. Participants navigated multiple appointments and complex medication regimes. Patients identified the need for acknowledgement of other chronic conditions and for streamlined care provision. Mutual caring and social isolation were also identified as part of the caring relationship.
CONCLUSIONS
There is a mandate to address the psychosocial support needs of people LWBC-CM, and their informal carers, given the burden of treatment for cancer survivors with moderate to severe complex conditions as they navigate health services.
PATIENT OR PUBLIC CONTRIBUTION
A patient representative has been involved in all stages of the study from development of the application through study design, commenting on documentation, analysis of transcripts and writing the manuscript. They are included as an author on the manuscript.
简介
了解和探索长期存活的癌症患者及其非正式照护者的复杂经历和心理社会支持需求，对于为癌症幸存者提供生存和支持性护理干预措施具有重要意义。
方法
通过初级保健，邀请苏格兰的长期存活的癌症患者及其非正式照护者参与此项深入的定性访谈。通过知情同意，进行一对一的面对面访谈，探讨症状体验、心理社会支持需求以及与卫生服务机构的互动情况。采用主题分析方法对访谈内容进行转录和分析。
结果
共对 41 名长期存活的癌症患者及其 23 名非正式照护者进行了访谈。确定了四个主题：癌症和合并症的身体和心理影响、主导故事-优先考虑的情况和对疾病的理解、利用卫生服务和治疗以及照顾患有复杂健康状况的人。疾病的类型和严重程度影响了人们的经历和日常生活。复杂的疲劳-多种健康状况引起的疲劳-主导症状学。参与者需要多次预约并管理复杂的药物治疗方案。患者表示需要承认其他慢性疾病，并提供简化的护理服务。相互照顾和社会孤立也是照顾关系的一部分。
结论
鉴于患有中度至重度复杂疾病的癌症幸存者在利用卫生服务机构时，治疗负担沉重，必须满足长期存活的癌症患者及其非正式照护者的心理社会支持需求。
患者或公众参与
一名患者代表自研究申请的制定到研究设计、对文件的评论、转录分析和手稿撰写的各个阶段都参与了研究。他们作为作者之一包含在手稿中。
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