Psychosocial and socioeconomic vulnerability among caregivers of children with retinoblastoma: a cross-sectional latent profile study
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Background
Caregivers of children with retinoblastoma (RB) face substantial psychological and socioeconomic challenges. However, the factors independently associated with caregiver burden and the distribution of risk across caregiver subgroups remain incompletely characterized. We examined psychosocial and socioeconomic correlates of caregiver burden, identified distinct vulnerability profiles, and evaluated factors associated with high-risk profile membership.
Methods
This cross-sectional study enrolled 413 primary caregivers of children with RB at a tertiary ophthalmic oncology center. Participants completed validated measures of caregiver burden (ZBI-22), anxiety (GAD-7), perceived social support (PSSS), family functioning (FAD-GF), and mental and physical quality of life (SF-12 MCS and PCS). Multivariable linear regression identified factors independently associated with caregiver burden and mental quality of life. Mediation analysis evaluated the indirect association between social support and burden through family functioning, and moderation analysis assessed whether household income modified the association between family dysfunction and burden. Latent profile analysis (LPA) identified caregiver risk profiles, and multinomial logistic regression examined factors associated with profile membership.
Results
Anxiety showed the strongest independent association with greater caregiver burden (standardized coefficient beta = 0.641, 95% CI [1.46, 1.84], P < 0.001) and poorer mental quality of life (beta = −0.483, 95% CI [−0.12, −0.08], P < 0.001). Family debt was independently associated with greater burden (beta = 0.195, P = 0.040). Family functioning accounted for 32.19% of the total association between social support and burden. Household income modified the association between family dysfunction and burden (interaction B = −0.85, P < 0.001), with a steeper gradient in lower-income households. LPA identified three profiles: severe burden-high vulnerability (n = 82, 19.85%), moderate burden (n = 193, 46.73%), and mild burden-high resilience (n = 138, 33.41%). Low-to-moderate household income was associated with higher odds of severe-profile membership (OR = 31.50, 95% CI [6.56, 151.24], P < 0.001).
Conclusions
Caregiver burden in pediatric RB was associated more strongly with psychosocial and socioeconomic factors than with the clinical indicators examined. Family functioning partly accounted for the association between social support and burden, while household income modified the association between family dysfunction and burden. These findings support prospective evaluation of family-centered and financial-support interventions and suggest that profile-based screening may help identify caregivers requiring more intensive support.
Key Messages
What is already known on this topic
Caregivers of children with retinoblastoma may experience psychological distress and financial strain related to visual loss, enucleation, prolonged treatment and repeated surveillance. However, caregiver heterogeneity and the joint contribution of psychosocial and socioeconomic factors remain insufficiently characterised.
What this study adds
In 413 caregivers, anxiety showed the strongest association with caregiver burden, while lower household income amplified the association between family dysfunction and burden. Latent profile analysis identified a high-burden, high-vulnerability subgroup comprising approximately one-fifth of caregivers, in whom financial hardship was concentrated.
How this study might affect research, practice or policy
Multidisciplinary retinoblastoma services may benefit from prospective evaluation of caregiver distress, family functioning and financial-risk screening, particularly during treatment-intensive periods.
