RESUMO
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.
Assuntos
Cuidadores , Neoplasias , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Neoplasias/terapia , Feminino , Masculino , Austrália , Pessoal de Saúde/psicologia , Pessoa de Meia-Idade , Desenvolvimento de Programas , Participação dos Interessados , Resiliência Psicológica , AdultoRESUMO
BACKGROUND: While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field. OBJECTIVE: This study aims to address the question, "what psychosocial interventions are available to promote the well-being of carers for people with cancer?" METHODS: A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format. RESULTS: It is anticipated that the study will be completed by October 2024. CONCLUSIONS: Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field. TRIAL REGISTRATION: PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56403.