Informal Caregiver Experiences in Colorectal Cancer Care: Qualitative Study in Kazakhstan
Abstract
Background: In countries with inadequate formal care infrastructure, reliance on family caregivers intensifies, elevating burnout risk. The aim of this study is to examine the lived experiences and needs of informal caregivers of patients with colorectal cancer.
Methods: From December 2025 to May 2026, we recruited 18 family caregivers of colorectal cancer patients from a cancer registry for semi-structured interviews. Transcripts were anonymized and analyzed using Braun and Clarke’s (2006) thematic analysis in MAXQDA Analytics Pro. Trustworthiness was established through member checking, peer debriefing, and an audit trail; data saturation was reached after the 16th interview.
Results: A member’s serious illness radically shifts priorities toward health and caregiving, with children prematurely adopting adult roles. Fear, uncertainty, or overwhelm can lead to relatives and friends distancing themselves or offering emotional support and financial aid. Family caregivers describe it as the most daunting task, especially in early postoperative weeks, grappling with pouch exchanges, peristomal skin protection, and leak management amid output unpredictability. Many said hospital training was insufficient, with only 1-2 rushed demonstrations, exacerbated by acute stress. This left them reliant on trial-and-error or online resources. Chronic sleep loss from helping with mobility and hygiene causes fatigue. Many (n = 12) reduce hours or quit jobs due to additional household duties and work-related limitations. Unreimbursed costs for ostomy appliances, medications, and transport strain finances, fostering isolation and resentment.
Conclusions: Public health responses should mandate longitudinal caregiver education programs, subsidized supplies, and community support groups. Integrating these into national oncology policies could prevent caregiver burnout, enhance treatment adherence, and improve health outcomes.
Key messages: • Standardized, hands-on stoma training is essential to empower caregivers.
• Holistic policies addressing financial and social strains are vital for sustainable colorectal cancer care.
Related
- Invisible Burden: Experiences and Unmet Needs of Informal Caregivers of Older Adults in Kazakhstan
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BibTeX
@article{zharylgapov2026informal,
title = {{Informal Caregiver Experiences in Colorectal Cancer Care: Qualitative Study in Kazakhstan}},
author = {A Zharylgapov and GK Koshmaganbetova and A Zhylkybekova},
journal = {The European Journal of Public Health},
year = {2026},
month = oct,
doi = {10.1093/eurpub/ckag169.1523},
url = {https://doi.org/10.1093/eurpub/ckag169.1523},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - Informal Caregiver Experiences in Colorectal Cancer Care: Qualitative Study in Kazakhstan
AU - A Zharylgapov
AU - GK Koshmaganbetova
AU - A Zhylkybekova
PY - 2026
DA - 2026/10/01
JO - The European Journal of Public Health
DO - 10.1093/eurpub/ckag169.1523
UR - https://doi.org/10.1093/eurpub/ckag169.1523
AB - Background: In countries with inadequate formal care infrastructure, reliance on family caregivers intensifies, elevating burnout risk. The aim of this study is to examine the lived experiences and needs of informal caregivers of patients with colorectal cancer. Methods: From December 2025 to May 2026, we recruited 18 family caregivers of colorectal cancer patients from a cancer registry for semi-structured interviews. Transcripts were anonymized and analyzed using Braun and Clarke’s (2006) thematic analysis in MAXQDA Analytics Pro. Trustworthiness was established through member checking, peer debriefing, and an audit trail; data saturation was reached after the 16th interview. Results: A member’s serious illness radically shifts priorities toward health and caregiving, with children prematurely adopting adult roles. Fear, uncertainty, or overwhelm can lead to relatives and friends distancing themselves or offering emotional support and financial aid. Family caregivers describe it as the most daunting task, especially in early postoperative weeks, grappling with pouch exchanges, peristomal skin protection, and leak management amid output unpredictability. Many said hospital training was insufficient, with only 1-2 rushed demonstrations, exacerbated by acute stress. This left them reliant on trial-and-error or online resources. Chronic sleep loss from helping with mobility and hygiene causes fatigue. Many (n = 12) reduce hours or quit jobs due to additional household duties and work-related limitations. Unreimbursed costs for ostomy appliances, medications, and transport strain finances, fostering isolation and resentment. Conclusions: Public health responses should mandate longitudinal caregiver education programs, subsidized supplies, and community support groups. Integrating these into national oncology policies could prevent caregiver burnout, enhance treatment adherence, and improve health outcomes. Key messages: • Standardized, hands-on stoma training is essential to empower caregivers. • Holistic policies addressing financial and social strains are vital for sustainable colorectal cancer care.
SN - 1101-1262
SN - 1464-360X
ER -