"I'm not the one with cancer but it's affecting me just as much": A qualitative study of rural caregivers' experiences seeking and accessing support for their health and wellbeing while caring for someone with cancer

Article

Johnston, Elizabeth A., Collins, Katelyn E., Vicario, Jazmin N., Sibthorpe, Chris and Goodwin, Belinda C.. 2024. ""I'm not the one with cancer but it's affecting me just as much": A qualitative study of rural caregivers' experiences seeking and accessing support for their health and wellbeing while caring for someone with cancer ." Supportive Care in Cancer. 32 (11). https://doi.org/10.1007/s00520-024-08947-9
Article Title

"I'm not the one with cancer but it's affecting me just as much": A qualitative study of rural caregivers' experiences seeking and accessing support for their health and wellbeing while caring for someone with cancer

ERA Journal ID13803
Article CategoryArticle
AuthorsJohnston, Elizabeth A., Collins, Katelyn E., Vicario, Jazmin N., Sibthorpe, Chris and Goodwin, Belinda C.
Journal TitleSupportive Care in Cancer
Journal Citation32 (11)
Article Number761
Number of Pages9
Year2024
PublisherSpringer
Place of PublicationGermany
ISSN0941-4355
1433-7339
Digital Object Identifier (DOI)https://doi.org/10.1007/s00520-024-08947-9
Web Address (URL)https://link.springer.com/article/10.1007/s00520-024-08947-9
Abstract

Purpose
Caregivers provide vital support to people with cancer but often report feeling unsupported themselves. This study investigated rural caregivers’ experiences seeking support for their health and wellbeing while caring for someone with cancer.

Methods
Through semi-structured interviews, 20 rural caregivers described their experiences seeking and accessing support for their own health and wellbeing while caring for someone with cancer, including what support was, or would have been, helpful. Interview transcripts were analysed using content analysis to identify the type and source of support sought and what aspects of the support were helpful or unhelpful.

Results
Health and wellbeing support was sought across medical and psychosocial domains. Caregivers’ responses reflected both facilitators and barriers to support-seeking and benefits and challenges of accessing support. Facilitators to support-seeking included telehealth options and being involved in patient care discussions, as this helped caregivers know what to expect in their role. Barriers included social isolation while travelling for treatment and caregivers’ needs for support not being acknowledged or understood by medical staff or social networks. Benefits of accessing support included help with managing daily responsibilities and being linked with additional services. Challenges included delays in receiving support, inadequate duration of support, and lack of lived experience among care providers.

Conclusions
To optimise rural caregivers’ access to support for their health and wellbeing, support services should be prompt and flexible in delivery, simple to navigate, integrated with patient care, improve caregivers’ coping ability, provide access to additional supports, and reduce caregiver burden.

KeywordsCaregivers ; Oncology ; Qualitative research; Regional and remote; Supportive care
Related Output
Is supplemented byCorrection to: "I'm not the one with cancer but it's affecting me just as much": A qualitative study of rural caregivers' experiences seeking and accessing support for their health and wellbeing while caring for someone with cancer
Contains Sensitive ContentDoes not contain sensitive content
ANZSRC Field of Research 2020321104. Cancer therapy (excl. chemotherapy and radiation therapy)
Public Notes

The accessible file is the submitted version of the paper. Please refer to the URL for the published version.

This article has been corrected. Please see the Related Output.

Byline AffiliationsCancer Council Queensland, Australia
Queensland University of Technology
QIMR Berghofer Medical Research Institute, Australia
School of Psychology and Wellbeing
Centre for Health Research
University of Melbourne
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Zimmer-Gembeck, Melanie J., Nesdale, Drew, McGregor, Leanne, Mastro, Shawna, Goodwin, Belinda and Downey, Geraldine. 2013. "Comparing reports of peer rejection: associations with rejection sensitivity, victimization, aggression, and friendship." Journal of Adolescence. 36 (6), pp. 1237-1246. https://doi.org/10.1016/j.adolescence.2013.10.002
Preferred electronic gaming machine environments of recreational versus problem gamblers: an in-venue mixed methods study
Thorne, Hannah Briony, Goodwin, Belinda, Langham, Erika, Rockloff, Matthew and Rose, Judy. 2016. "Preferred electronic gaming machine environments of recreational versus problem gamblers: an in-venue mixed methods study." Journal of Gambling Issues. https://doi.org/10.4309/jgi.2016.34.12
Reflective minds and open hearts: cognitive style and personality predict religiosity and spiritual thinking in a community sample
Browne, Matthew, Pennycook, Gordan, Goodwin, Belinda and McHenry, Melinda. 2014. "Reflective minds and open hearts: cognitive style and personality predict religiosity and spiritual thinking in a community sample." European Journal of Social Psychology. 44 (7), pp. 736-742. https://doi.org/10.1002/ejsp.2059
EGM jackpots and player behaviour: an in-venue shadowing study
Browne, Matthew, Langham, Erika, Rockloff, Matthew J., Li, En, Donaldson, Phillip and Goodwin, Belinda. 2015. "EGM jackpots and player behaviour: an in-venue shadowing study." Journal of Gambling Studies. 31 (4), pp. 1695-1714. https://doi.org/10.1007/s10899-014-9485-y
Rash impulsivity predicts lower anticipated pleasure response and a preference for the supernormal
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Loxton, Natalie J.. 2016. "Rash impulsivity predicts lower anticipated pleasure response and a preference for the supernormal." Personality and Individual Differences. 94, pp. 206-210. https://doi.org/10.1016/j.paid.2016.01.030
Do gamblers eat more salt? Testing a latent trait model of covariance in consumption
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Donaldson, Phillip. 2015. "Do gamblers eat more salt? Testing a latent trait model of covariance in consumption." Journal of Behavioural Addictions. 4 (3), pp. 170-180. https://doi.org/10.1556/2006.4.2015.022
Measuring preference for supernormal over natural rewards: a two-dimensional anticipatory pleasure scale
Goodwin, B. C., Browne, M. and Rockloff, M.. 2015. "Measuring preference for supernormal over natural rewards: a two-dimensional anticipatory pleasure scale." Evolutionary Psychology. 13 (4). https://doi.org/10.1177/1474704915613914