Empowering Help seeking Behavior in Caregiver during Hospitalization: A Social Case Work Approach

Abstract

Abstract

Hemangioblastoma is a rare benign vascular tumor of the central nervous system, which causes significant physical, emotional, and financial burden on patients and their caregivers. The financial burden is quite high in families hailing from lower socio-economic status especially with no coverage of health insurance. Further, the psychosocial issues associated with brain tumors are commonly studied but very rarely intensive efforts are made from health care teams to reduce the psychosocial burden. The present case illustration will highlight the role of community support and need for psychoeducation, empowering caregivers, importance of community linkage with hospitals, developing help seeking behavior and reducing caregiver burden in easing psychosocial burden in families with brain tumor patients. Integrating community resources and addressing systemic barriers to provide holistic care to support vulnerable families by Medical and Psychiatric Social Workers are recommended.

References

1. Cleveland Clinic. Hemangioblastoma [Internet]. [cited 2025 Jan 17];Available from: https://my.clevelandclinic.org/health/diseases/22738-hemangioblastoma
2. Chamli A, Aggarwal P, Jamil RT, Litaiem N. Hemangioma [Internet]. In: StatPearls. Treasure Island (FL): StatPearls Publishing; 2025 [cited 2025 Jan 17]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK538232/
3. Schubart JR, Kinzie MB, Farace E. Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-oncology [Internet] 2008 [cited 2025 Jan 17];10:61–72. Available from: https://academic.oup.com/neuro-oncology/article-abstract/10/1/61/1226781
4. Raju B, Bora D. Letter to the Editor Regarding "Health Literacy in Neurosurgery: A Scoping Review". World neurosurgery [Internet] 2024 [cited 2025 Jan 17];189:496–7. Available from: https://pubmed.ncbi.nlm.nih.gov/39252339/
5. Birudu R, Kanmani TR. Are Psychosocial Problems Adequately Investigated in Pediatric Glioma? Oncology Journal of India [Internet] 2018 [cited 2025 Jan 17];2:65. Available from: https://journals.lww.com/ojji/fulltext/2018/02030/are_psychosocial_problems_adequately_investigated.7.aspx
6. Raju B, Lukose S, Reddy NK. Does lack of resources within the family starting point to social exclusion for persons with brain cancer. J Neurosci Rural Pract [Internet] 2016 [cited 2025 Jan 17];7:125. Available from: Link
7. National Brain Tumour Society. Katie & Pete’s Story: Navigating Financial Challenges Following a Glioblastoma Diagnosis [Internet]. Available from: https://braintumor.org/news/katie-petes-story-navigating-financial-challenges-following-a-glioblastoma-diagnosis/
8. Khanmohammadi S, Mobarakabadi M, Mohebi F. The Economic Burden of Malignant Brain Tumors [Internet]. In: Rezaei N, Hanaei S, editors. Human Brain and Spinal Cord Tumors: From Bench to Bedside. Volume 1. Cham: Springer International Publishing; 2023 [cited 2025 Jan 17]. page 209–21. Available from: https://link.springer.com/10.1007/978-3-031-14732-6_13
9. Genetic and Rare Diseases Information Center. Hemangioblastoma [Internet]. Available from: https://rarediseases.info.nih.gov/diseases/8232/hemangioblastoma
10. Fjeldheim S, Levin I, Engebretsen E. The theoretical foundation of social case work. Nordic Social Work Research [Internet] 2015 [cited 2025 Jan 17];5:42–55. Available from: http://www.tandfonline.com/doi/full/10.1080/2156857X.2015.1067900
11. Shrivastava SR, Shrivastava PS, Ramasamy J. Medical social worker: Strengthening linkages between the hospital and the community. Int J Health Syst Disaster Manag [Internet] 2014 [cited 2025 Jan 17];2:130. Available from: Link
12. Reinhard SC, Given B, Petlick NH, Bemis A. Supporting family caregivers in providing care. Patient safety and quality: An evidence-based handbook for nurses [Internet] 2008 [cited 2025 Jan 17];Available from: https://www.ncbi.nlm.nih.gov/books/NBK2665/
13. Reblin M, Small B, Jim H, Weimer J, Sherwood P. Mediating burden and stress over time: Caregivers of patients with primary brain tumor. Psycho-Oncology [Internet] 2018 [cited 2025 Jan 17];27:607–12. Available from: https://onlinelibrary.wiley.com/doi/10.1002/pon.4527
14. Desai A, Jella TK, Cwalina TB, Wright CH, Wright J. Demographic analysis of financial hardships faced by brain tumor survivors. World Neurosurgery [Internet] 2022 [cited 2025 Jan 17];158:e111–21. Available from: https://www.sciencedirect.com/science/article/pii/S1878875021016211
15. Aoun SM, Deas K, Howting D, Lee G. Correction: Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups. Plos one [Internet] 2016 [cited 2025 Jan 17];11:e0148074. Available from: https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0148074&type=printable