229: Hidden Burden of Cancer Pain: High Caregiver Strain Among Families in Sri Lanka

Topic: Clinical Science
Subtopic: Non-specific to any diagnosis, Psychology, Epidemiology, Treatment/management

Background and Aims: Cancer pain in advanced disease affects not only patients but also family caregivers who provide prolonged physical, emotional, and practical support. Caregivers of bedridden patients often experience substantial psychological distress, fatigue, financial strain, and social disruption. In many low- and middle-income countries, including Sri Lanka, family members provide most home-based cancer care because formal palliative services remain limited. Despite this, caregiver burden remains under-recognized in pain management systems. Previous research has mainly focused on patient symptoms rather than family impact. Understanding the relationship between caregiver burden, support systems, and caregiving demands is essential for developing family-centered pain services. This study aimed to assess the level of caregiver burden among informal caregivers of bedridden cancer patients in Sri Lanka and identify socio-demographic, caregiving-related, and support-related factors associated with higher burden.

Methods: A hospital-based cross-sectional analytical study was conducted among 452 informal caregivers of bedridden cancer patients receiving care through the National Cancer Institute of Sri Lanka, Maharagama. Participants were selected using systematic random sampling. Data were collected using interviewer-administered structured questionnaires in local languages after informed consent. Caregiver burden was assessed using the 12-item Zarit Burden Interview. Additional measures included caregiver socio-demographic characteristics, relationship to patient, duration of caregiving, daily caregiving hours, perceived social and emotional support, and financial and practical support. Descriptive statistics summarized participant characteristics and burden levels. Bivariate analyses examined associations between burden and explanatory variables. Pearson correlation was used for continuous measures, and multivariable linear regression identified independent predictors of caregiver burden. Statistical significance was set at p < 0.05.

Results: Among 452 caregivers, women comprised the majority of participants and most caregivers were close family members, particularly parents and spouses. Mean caregiver burden scores indicated a substantial overall burden, with approximately 60% experiencing moderate-to-severe burden levels. Female caregivers reported significantly higher burden than male caregivers. Longer duration of caregiving and extended daily caregiving hours were significantly associated with increased burden. Lower perceived social and emotional support was strongly associated with higher caregiver burden. Financial and practical limitations also contributed to poorer caregiver outcomes. In multivariable analysis, perceived social and emotional support remained the strongest independent predictor of lower burden after adjustment for demographic and caregiving variables. Patient pain severity alone was less strongly associated with caregiver burden than deficits in caregiver support resources.

Conclusions: Informal caregivers of bedridden cancer patients in Sri Lanka experience considerable burden that extends beyond routine caregiving demands. Psychosocial and practical support deficits appear to influence caregiver strain more strongly than pain severity alone. These findings suggest that cancer pain management should move beyond patient symptom control to include systematic assessment of caregiver wellbeing. Screening for caregiver burden during oncology and palliative visits may help identify families at risk. Integrating counseling, respite care, caregiver education, and practical resource referral into cancer pain services could reduce hidden family suffering and improve continuity of home-based care. Family-centered pain models may be particularly important in resource-limited settings where unpaid relatives remain the primary source of long-term supportive care.

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Presenting Author: H A Dumini Sulochana
Submitting Author: Dumini Sulochana

Senior Author: H A Dumini Sulochana

IASP 2026 Global Year theme of Neuropathic Pain: Yes