Abstract:
Background
Parental refusal for enucleation is a major challenge in management of retinoblastoma patients, and it is associated with low survival rates. Knowing and addressing factors leading to parental/caregiver refusal will help improve the survival rates of children with retinoblastoma.
Aim: To determine the factors associated with refusal for enucleation among parents/caregivers of children with retinoblastoma at Muhimbili National Hospital. Materials and Methods: A descriptive hospital based cross sectional study was conducted from June to December 2019. The study employed both quantitative and qualitative methods. A total of 50 participants were recruited using non-probability consecutive technique. Ten in-depth interviews were conducted by purposive sampling technique. A questionnaire with closed and open-ended questions and verbatim interviews were used to collect data. Statistical Package for the Social Sciences (SPSS) version 23.0 and systematic thematic approach were used to analyze data. Ethical approval was obtained.
Results: This study involved 50 parents/caregivers of children with retinoblastoma who attended Muhimbili National Hospital during the study period. More than two thirds of the participants were females (78%) with a mean age of 33.3yrs,had a primary level education, peasants, had 2-4 children (60%) and most children had unilateral retinoblastoma (83%).The proportion of refusal for enucleation was (24%), advanced stages of the disease was associated with refusal for enucleation of more than 3months in 25%.Majority of parents/caregivers refused enucleation because of low level of education, family and economic challenges, lack of employment, traditional and religious beliefs, perception towards appearance of the child after eye removal and the associated social stigma.
Conclusions: The proportion of refusal for enucleation is high, it hinders timely and proper management of children with retinoblastoma and a barrier to their survival. Most parents/caregivers refused enucleation because of their perception towards appearance of the child after enucleation, low level of education traditional and religious beliefs, poor socioeconomic status. Refusal for enucleation was associated with disease progression and eventual death.
Recommendations: 1. Provision of ocular prosthesis and protective glasses is encouraged to all children after eye removal to improve appearance and reduce the social stigma.
2. The hospital needs to help all children with retinoblastoma to get access to free medical care or pay a minimal contribution of health services through health insurance coverage.
3. There is a need to increase awareness and knowledge about the nature of the disease to the community, through campaigns, media etc.
