Living With and Beyond Cancer With Comorbid Conditions: Qualitative Insights to Understand Psychosocial Support Needs

IF 3.2 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Health Expectations Pub Date : 2024-10-06 DOI:10.1111/hex.70039
Debbie Cavers, Sarah Cunningham-Burley, Eila Watson, Elspeth Banks, Christine Campbell
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Abstract

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.

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癌症并发症的生存与超越:了解社会心理支持需求的定性洞察。
导言:我们迫切需要了解和探索轻度白血病患者及其非正规护理人员的复杂经历和心理支持需求,以便为幸存者和支持性护理干预措施提供信息:方法:通过初级保健邀请苏格兰的 LWBC-CM 患者及其非正规护理人员进行了深入的定性访谈。在知情同意的情况下进行了一对一、面对面的访谈,探讨了症状体验、社会心理支持需求以及与医疗服务机构的互动。访谈内容均已转录,并采用主题方法进行了分析:共访谈了 41 名 LWBC-CM 患者和 23 名非正式护理人员。确定了四个主题:癌症和并发症的生理和心理影响、主导因素--病情优先级和对疾病的理解、健康服务和治疗导航以及对复杂健康状况患者的护理。病情的类型和严重程度影响着人们的经历和日常生活。复杂疲劳--由多种健康状况引起的疲劳--是主要症状。参与者要应付多次预约和复杂的药物治疗。患者认为有必要承认其他慢性疾病,并简化护理服务。相互关怀和社会隔离也被认为是护理关系的一部分:鉴于患有中度至重度复杂病症的癌症幸存者在接受医疗服务时所承受的治疗负担,有必要解决 LWBC-CM 患者及其非正式护理者的社会心理支持需求:患者代表参与了研究的所有阶段,从申请的开发到研究的设计、对文件的评论、对记录的分析以及手稿的撰写。他们是手稿的作者之一。
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来源期刊
Health Expectations
Health Expectations 医学-公共卫生、环境卫生与职业卫生
CiteScore
5.20
自引率
9.40%
发文量
251
审稿时长
>12 weeks
期刊介绍: Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.
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