What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative study

Abstract Background Patients with a rare cancer in rural, regional, and remote Australia experience heightened challenges in their illness journey, including significant psychosocial impacts. Although peer support has shown benefits for common cancer patients living in urban areas, these programs of...

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Main Authors: L. Hemming, S. F. A. Duijts, C. Cockburn, C. Wilson, E. Y. N. Yuen, E. Spelten
Format: Article
Language:English
Published: BMC 2025-02-01
Series:BMC Cancer
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Online Access:https://doi.org/10.1186/s12885-025-13782-0
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author L. Hemming
S. F. A. Duijts
C. Cockburn
C. Wilson
E. Y. N. Yuen
E. Spelten
author_facet L. Hemming
S. F. A. Duijts
C. Cockburn
C. Wilson
E. Y. N. Yuen
E. Spelten
author_sort L. Hemming
collection DOAJ
description Abstract Background Patients with a rare cancer in rural, regional, and remote Australia experience heightened challenges in their illness journey, including significant psychosocial impacts. Although peer support has shown benefits for common cancer patients living in urban areas, these programs often do not reach underserved groups for instance those with a rare cancer, or those living in rural, regional or remote areas. This study aimed to explore the characteristics of peer support programs for patients with a rare cancer living in rural, regional or remote areas. Methods Focus groups and interviews were conducted with 39 people with a rare cancer and 10 healthcare providers to explore key points for inclusion in a peer support service for people diagnosed with a rare cancer living in rural, regional or remote areas. Data were transcribed verbatim and analysed thematically, using Nvivo. Results Participants described their peer support needs using the key terms who, what, how, where, and when. Participants advocated for a flexible, multicomponent intervention that could meet the varied and fluctuating needs of this group. Participants also noted challenges with the practical delivery of such a service, specifically, the risk of receiving misinformation, adverse emotional reactions, interpersonal challenges and implementation issues. Conclusions This study highlights the role of peer support in addressing unmet needs of patients with a rare cancer, particularly in rural areas, emphasising the importance of tailored, flexible, and multimodal interventions for the delivery of peer support that addresses diverse needs.
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spelling doaj-art-26e7dac7337a4c4a97be468256edcff82025-08-20T02:01:35ZengBMCBMC Cancer1471-24072025-02-0125111310.1186/s12885-025-13782-0What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative studyL. Hemming0S. F. A. Duijts1C. Cockburn2C. Wilson3E. Y. N. Yuen4E. Spelten5Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe UniversityDepartment of Research and Development, Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland, IKNL)Rare Cancers AustraliaMelbourne School of Population and Global Health, Melbourne UniversitySchool of Nursing and Midwifery, Deakin UniversityViolet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe UniversityAbstract Background Patients with a rare cancer in rural, regional, and remote Australia experience heightened challenges in their illness journey, including significant psychosocial impacts. Although peer support has shown benefits for common cancer patients living in urban areas, these programs often do not reach underserved groups for instance those with a rare cancer, or those living in rural, regional or remote areas. This study aimed to explore the characteristics of peer support programs for patients with a rare cancer living in rural, regional or remote areas. Methods Focus groups and interviews were conducted with 39 people with a rare cancer and 10 healthcare providers to explore key points for inclusion in a peer support service for people diagnosed with a rare cancer living in rural, regional or remote areas. Data were transcribed verbatim and analysed thematically, using Nvivo. Results Participants described their peer support needs using the key terms who, what, how, where, and when. Participants advocated for a flexible, multicomponent intervention that could meet the varied and fluctuating needs of this group. Participants also noted challenges with the practical delivery of such a service, specifically, the risk of receiving misinformation, adverse emotional reactions, interpersonal challenges and implementation issues. Conclusions This study highlights the role of peer support in addressing unmet needs of patients with a rare cancer, particularly in rural areas, emphasising the importance of tailored, flexible, and multimodal interventions for the delivery of peer support that addresses diverse needs.https://doi.org/10.1186/s12885-025-13782-0CancerRare cancerPeer supportRuralRegional and remote health
spellingShingle L. Hemming
S. F. A. Duijts
C. Cockburn
C. Wilson
E. Y. N. Yuen
E. Spelten
What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative study
BMC Cancer
Cancer
Rare cancer
Peer support
Rural
Regional and remote health
title What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative study
title_full What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative study
title_fullStr What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative study
title_full_unstemmed What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative study
title_short What do patients with a rare cancer living in rural, regional or remote areas and stakeholders want from a peer support program? A qualitative study
title_sort what do patients with a rare cancer living in rural regional or remote areas and stakeholders want from a peer support program a qualitative study
topic Cancer
Rare cancer
Peer support
Rural
Regional and remote health
url https://doi.org/10.1186/s12885-025-13782-0
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