“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

• Published in: Supportive care in cancer Vol. 32; no. 11; p. 761
• Main Authors: Johnston, Elizabeth A., Collins, Katelyn E., Vicario, Jazmin N., Sibthorpe, Chris, Goodwin, Belinda C.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-11-2024; Springer Nature B.V
• Subjects: Adult; Aged; Cancer; Caregivers; Caregivers - psychology; Female; Health care access; Health Services Accessibility; Humans; Interviews as Topic; Male; Medicine; Medicine & Public Health; Mental health; Middle Aged; Neoplasms - psychology; Neoplasms - therapy; Nursing; Nursing Research; Oncology; Pain Medicine; Qualitative Research; Rehabilitation Medicine; Rural areas; Rural Population; Social Support; Stress; Telemedicine; Australia; Caregivers; Qualitative research; Oncology; Supportive care; Regional and remote
• ISSN: 0941-4355; 1433-7339; 1433-7339
• DOI: 10.1007/s00520-024-08947-9

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.