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Adapting a Preparatory Skills‐Building Programme for Carers of People With Cancer Through Co‐Design

The iCanSupport Project

Bibliographic Data

ID19508035
AuthorsBrona Nic Giolla Easpaig (0000-0001-6787-056X, Australian Institute for Health Innovation Macquarie University Sydney New South Wales Australia, corresponding author), Bronwyn Newman (0000-0002-5147-7381, Australian Institute for Health Innovation Macquarie University Sydney New South Wales Australia), Judith Johnson (0000-0003-0431-013X, Division of Nursing, Midwifery and Social Work, School of Health Sciences University of Manchester Manchester UK), Ursula M Sansom‐Daly (0000-0003-4200-8900, School of Clinical Medicine, Discipline of Paediatrics & Child Health, UNSW Medicine and Health, Randwick Clinical Campus UNSW Sydney Sydney New South Wales Australia), Lucy Jones (0000-0002-8947-9577, Neuroblastoma Australia Sydney New South Wales Australia), Lukas Hofstatter (Carers NSW Sydney New South Wales Australia), Eden G Robertson (0000-0001-9395-7896, School of Clinical Medicine, Discipline of Paediatrics & Child Health, UNSW Medicine and Health, Randwick Clinical Campus UNSW Sydney Sydney New South Wales Australia), Reema Harrison (0000-0002-8609-9827, Australian Institute for Health Innovation Macquarie University Sydney New South Wales Australia)
Year2024
Volume27
Issue5
Pagese70061-e70061
Publication date2024-10-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.70061
PMID39415624
OpenAlexW4403497934
LanguageEN
References cited36

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

Medical education · Mental health · Political science · Psychological resilience · Psychotherapist · Public relations · Stakeholder · Cancer survivorship and care · Family Caregiving in Mental Illness · Family Support in Illness · Medicine · Nursing · Psychology

  • Thematic Analysis

    G Terry, Nikki Hayfield et al.•The Sage Handbook of Qualitative…•2017

  • Employing cofacilitation to balance power and priorities during health service codesign

    Open Access•Reema Harrison, Bronwyn Newman et al.•Health Expectations•2024

Citation velocityhistorical
Highly citedNo

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