Dimensions of Social Capital for Supporting Informal Carers of Patients With Advanced Chronic Illness in the Community: A Concept Mapping Study

IF 3.2 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2025-09-26 DOI:10.1111/hex.70410

Marques Shek Nam Ng, Winnie Kwok Wei So, Kai Chow Choi, Wallace Chi Ho Chan, Helen Yue Lai Chan, Carmen Wing Han Chan

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引用次数: 0

Abstract

Introduction

Social capital, defined as social interactions that increase the productivity of a community, can help address the health needs of the community. Although evidence suggests that carers of patients with advanced chronic illnesses experience a high caregiving burden and require community support, the specific dimensions of social capital they need remain unclear.

Methods

This concept mapping study was conducted between April 2021 and July 2023. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals and 24 community members, were recruited through purposive and snowball sampling. The research team initially conducted semi-structured interviews to brainstorm and collect important statements related to the study objectives. Subsequently, the participants were invited to sort and rate these statements. The responses from the rating and sorting tasks were analysed using multidimensional scaling and hierarchical cluster analysis. The importance ratings and demographic backgrounds were summarised with descriptive statistics.

Results

Five clusters emerged from the analysis: carers' attributes, carers' networks, carers and service providers, carers and the local community, and carers and society. Among these clusters, the participants deemed healthcare and social services the most important, followed by positive interactions with the care recipient, a sense of responsibility, and readiness to accept support. They also valued the support received from family members, friends, neighbours, other carers and reliable communication channels. In addition, inclusive public spaces and flexible working arrangements were considered valuable for providing community support to the carers of patients with chronic illnesses in the community.

Conclusion

Despite the many challenges faced by informal carers of patients with advanced chronic illnesses, social capital can be leveraged to address these issues. The dimensions of social capital identified in this study can serve as a framework for developing social care programmes and policies to support informal carers.

Patient or Public Contribution

Patients, informal carers, professionals and community members involved in the care of patients with advanced chronic illnesses participated in this study.

Abstract Image

查看原文本刊更多论文

支持社区晚期慢性病患者非正式照护者的社会资本维度：一个概念图研究

社会资本被定义为提高社区生产力的社会互动，可以帮助解决社区的卫生需求。尽管有证据表明，晚期慢性疾病患者的护理人员承受着很高的护理负担，需要社区支持，但他们需要的社会资本的具体维度仍不清楚。方法于2021年4月至2023年7月进行概念图绘制研究。通过有目的的滚雪球抽样，共招募了98名利益相关者，包括25名护理人员、25名患者、24名专业人员和24名社区成员。研究小组最初进行了半结构化访谈，以集思广益并收集与研究目标相关的重要陈述。随后，参与者被邀请对这些陈述进行分类和评分。采用多维标度和层次聚类分析方法对评分和排序任务的响应进行了分析。用描述性统计对重要性等级和人口背景进行了总结。结果分析得出5个聚类：照顾者属性、照顾者网络、照顾者与服务提供者、照顾者与当地社区、照顾者与社会。在这些类别中，参与者认为医疗保健和社会服务最重要，其次是与护理接受者的积极互动、责任感和接受支持的意愿。他们亦重视从家人、朋友、邻居、其他照顾者及可靠的沟通渠道获得的支持。此外，包容性的公共空间和灵活的工作安排被认为对于向社区慢性病患者的护理人员提供社区支持很有价值。尽管晚期慢性疾病患者的非正式护理人员面临许多挑战，但可以利用社会资本来解决这些问题。本研究确定的社会资本维度可以作为制定社会关怀计划和政策的框架，以支持非正规照顾者。参与晚期慢性疾病患者护理的患者、非正式护理人员、专业人员和社区成员参与了本研究。

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来源期刊

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.