Adapting a Preparatory Skills-Building Programme for Carers of People With Cancer Through Co-Design: The iCanSupport Project

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2024-10-17 DOI:10.1111/hex.70061

Bróna Nic Giolla Easpaig, Bronwyn Newman, Judith Johnson, Ursula M. Sansom-Daly, Lucy Jones, Lukas Hofstätter, Eden G. Robertson, Reema Harrison

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Abstract

Introduction

Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill-prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers feel better equipped to support a person with cancer are lacking. This study aimed to address this need by adapting an evidence-based intervention to be suitable for carers of people with cancer.

Methods

This study used an exploratory, qualitative design consisting of experienced-based co-design and an in-depth stakeholder engagement strategy. An existing evidence-based programme to promote resilience in the context of providing care was adapted for relevance to carers for people with cancer via two co-design workshops with carers and healthcare professionals (n = 8). The resulting prototype programme was refined based on stakeholder consultations with staff and consumer members of cancer and carer support organisations across Australia (n = 16). Transcripts of the workshops, meetings and written feedback from carers were thematically analysed.

Results

Major programme developments were guided by three themes that emerged from the co-design workshops: ‘creating value for carers’, ‘multiple contributors to carer distress’ and ‘the need for flexible implementation’. Analysis of the stakeholder consultation data showed that the themes of ‘diversity in carer journeys’ and ‘creating impact for carers’ were key to further tailoring the programme for applicability to practice. An adapted programme called ‘iCanSupport’ resulted from the process, with key adaptations being more relevant case study scenarios for carers and greater flexibility in accessing and engaging with the intervention to accommodate a range of carer circumstances.

Conclusion

Programmes to build skills for becoming a carer for someone with cancer are absent, yet they are desired by carers. Using co-design provided a user-centric approach to adapt an existing evidence-based programme. Programme evaluation is required to determine the effectiveness of the co-designed approach in improving carer preparedness among a range of cohorts.

Patient or Public Contribution

Carers and consumers with lived experience and others involved in supporting consumers made valuable contributions to co-designing and refining the programme in addition to providing ongoing guidance in the unfolding analysis and reporting of this research.

查看原文本刊更多论文

通过共同设计为癌症患者的照顾者改编技能培养预备课程：iCanSupport 项目

导言：医疗服务依赖于照护者为身患癌症的亲人提供照护，但许多照护者往往觉得自己没有做好准备。尽管有许多支持照护者心理健康的计划，但缺乏帮助照护者更好地支持癌症患者的计划。本研究旨在通过调整循证干预措施来满足这一需求，使其适合癌症患者的照顾者。方法本研究采用探索性定性设计，包括基于经验的共同设计和利益相关者深度参与策略。通过与癌症患者照护者和医疗保健专业人员（n = 8）的两次共同设计研讨会，对现有的循证计划进行了调整，使其适用于癌症患者照护者。在与澳大利亚各地癌症患者和护理者支持组织的工作人员和消费者成员（n = 16）进行利益相关者咨询的基础上，对最终形成的原型计划进行了改进。对研讨会和会议的记录以及护理者的书面反馈进行了专题分析。结果共同设计研讨会产生的三个主题指导了主要计划的发展：为照顾者创造价值"、"造成照顾者痛苦的多种因素 "和 "灵活实施的必要性"。对利益相关者咨询数据的分析表明，"照护者旅程的多样性 "和 "为照护者创造影响 "这两个主题是进一步调整计划使其适用于实践的关键。在这一过程中，一个名为 "iCanSupport "的改编计划应运而生，其主要改编之处在于为照护者提供了更多相关的案例研究场景，以及在获取和参与干预措施方面更大的灵活性，以适应各种照护者的情况。结论目前还没有为癌症患者提供照顾者技能培训的项目，但照顾者对这些项目很感兴趣。共同设计提供了一种以用户为中心的方法来调整现有的循证计划。我们需要对该计划进行评估，以确定共同设计的方法在改善不同人群中照顾者的准备情况方面的有效性。患者或公众的贡献具有生活经验的照护者和消费者以及其他参与支持消费者的人员为共同设计和完善该计划做出了宝贵的贡献，此外还为本研究的分析和报告提供了持续的指导。

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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.