Family Caregivers’ Perspective for Cancer Care in a Tertiary Care Centre of Assam

Marycharan Devi Sagolsem; Tulika Goswami Mahanta

doi:10.51957/Healthline_706_2025

Authors

Marycharan Devi Sagolsem Post-Graduate Student, Department of Community Medicine, Assam Medical College, Dibrugarh, India Author https://orcid.org/0009-0002-5917-7153
Tulika Goswami Mahanta Professor, Department of Community Medicine, Assam Medical College, Dibrugarh, India Author https://orcid.org/0000-0003-2433-5342

DOI:

https://doi.org/10.51957/Healthline_706_2025

Keywords:

Cancer, Caregiver Burden, Family caregiver, Mixed method study, Zarit Burden Interview Score

Abstract

Introduction: Family caregivers (FC) of patients with cancer has to undergo a lot of difficulties while taking care of the patients especially during advanced stage and often face burnout. Objective: To assess cancer patient’s caregivers’ perspective in a tertiary care centre of Dibrugarh, Assam. Methods: A Cross-sectional mixed method study was done among. Sample size was 180. Patients with cancer and their primary caregivers in a Tertiary Cancer Centre of Assam were enrolled between May-November 2024. Pretested and predesigned questionnaire was used to collect data from caregivers of cancer patients. Zarit Burden Interview (ZBI) format was used for assessing burden of caregivers. In depth interview of 20 caregivers (till saturation level) was done and the data collected was used for qualitative study. Analysis was done using SPSS 25 and Atlas TI. Result: A total of 155 participated in the study. Mean age of the caregivers was 42.26 ± 11.84 years and mean Zarit Burden score of caregivers was 36.44±9.65. Majority (103, 67%) caregivers reported mild-to-moderate burden, while 41 caregivers (26%) reported moderate-to-severe burden. Financial constrain, lack of social and emotional support, communication challenges emerged as major themes in qualitative study. Conclusion: Financial and emotional strain, dependency, anxiety and stress need to be addressed with holistic implementation of community-based interventions such as different welfare scheme, strengthened support system and communication interventions.

References

1. Mishra S, Gulia A, Satapathy S, Gogia A, Sharma A, Bhatnagar S. Caregiver Burden and Quality of Life among Family Caregivers of Cancer Patients on Chemotherapy: A Prospective Observational Study. Indian J Palliat Care. 2021 Feb 17;27(1):109–12.

2. Sathishkumar K, Chaturvedi M, Das P, Stephen S, Mathur P. Cancer incidence estimates for 2022 & projection for 2025: Result from National Cancer Registry Programme, India. Indian J Med Res. 2022;156(4–5):598–607.

3. Shanker N, Mathur P, Das P, Sathishkumar K, Shalini AJM, Chaturvedi M. Cancer scenario in North-East India & need for an appropriate research agenda. Indian J Med Res. 2021 Jul;154(1):27–35.

4. Wang T, Molassiotis A, Chung BPM, Tan JY. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care. 2018 Jul 23;17(1):96.

5. Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study - PubMed [Internet]. [cited 2023 Oct 10]. Available from: https://pubmed.ncbi.nlm.nih.gov/34215933/

6. LeSeure P, Chongkham-ang S. The Experience of Caregivers Living with Cancer Patients: A Systematic Review and Meta-Synthesis. J Pers Med. 2015 Nov 19;5(4):406–39.

7. Chong E, Crowe L, Mentor K, Pandanaboyana S, Sharp L. Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer. Support Care Cancer. 2023;31(1):74.

8. Sun V, Raz DJ, Kim JY. Caring for the informal cancer caregiver. Curr Opin Support Palliat Care. 2019 Sep;13(3):238–42.

9. Utz RL, Warner EL. Caregiver Burden Among Diverse Caregivers. Cancer. 2022 May 15;128(10):1904–6.

10. Kondeti AK, Yadala A, Lakshmi NR, Prakash CSK, Palat G, Varthya SB. Assessment of Caregiving Burden of Family Caregivers of Advanced Cancer Patients and Their Satisfaction with the Dedicated Inpatient Palliative Care Provided to Their Patients: A Cross-Sectional Study from a Tertiary Care Centre in South Asia. Asian Pac J Cancer Prev APJCP. 2021 Jul;22(7):2109–15.

11. Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O’Donnell M. The Zarit Burden Interview: a new short version and screening version. The Gerontologist. 2001 Oct;41(5):652–7.

12. A comparison of psychometric properties of two common measures of caregiving burden: the family burden interview schedule (FBIS-24) and the Zarit caregiver burden interview (ZBI-22) | Health and Quality of Life Outcomes | Full Text [Internet]. [cited 2025 May 27]. Available from: https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01335-x

13. Mirsoleymani SR, Rohani C, Matbouei M, Nasiri M, Vasli P. Predictors of caregiver burden in Iranian family caregivers of cancer patients. J Educ Health Promot. 2017 Oct 4;6:91.

14. Lukhmana S, Bhasin SK, Chhabra P, Bhatia MS. Family caregivers’ burden: A hospital based study in 2010 among cancer patients from Delhi. Indian J Cancer. 2015 Mar;52(1):146.

15. Girgis A, Lambert S, Johnson C, Waller A, Currow D. Physical, Psychosocial, Relationship, and Economic Burden of Caring for People With Cancer: A Review. J Oncol Pract. 2013 Jul;9(4):197–202.

16. Halder P, Dixit J, Gupta N, Mehra N, Singh A, Malhotra P, et al. Access to timely cancer treatment initiation in India: extent, determinants and trends. Lancet Reg Health - Southeast Asia [Internet]. 2025 Jan 1 [cited 2025 Mar 8];32. Available from: https://www.thelancet.com/journals/lansea/article/PIIS2772-3682(24)00164-1/fulltext

17. Thana K, Lehto R, Sikorskii A, Wyatt G. Informal caregiver burden for solid tumour cancer patients: a review and future directions. Psychol Health. 2021 Jan 4;1–23.