Caregiver Burden In Nigerian Parents Of Children With Oculocutaneous Albinism

Abstract

Introduction: Oculocutaneous albinism (OCA) is a rare recessively inherited abnormality of pigmentation, worldwide in distribution, but with particularly devastating consequences in the African. The child is usually born healthy with Caucasoid phenotype to unsuspecting normally pigmented African parents. Uncomplimentary myths about aetiology and characteristics of albinos, the lack of protective skin pigment in the harsh African sun and poor vision combine to limit education, recreation and occupation of OCA There is no cure or treatment for OCA but strategies directed at sun avoidance and protection can very effectively prevent skin cancers and low vision aids can improve school performance. To be effective, these interventions need to be started in infancy. In the absence of any national medical or social support for the OCA, the burden of care has been thrust on unguided, ill-equipped parents with dire consequences. 

Objectives: Our study sought to explore the caregiving burden of Nigerian parents of OCA to identify their support needs, determine the appropriate interventions to guide Nigerian policy makers. 

Method: By means of interviewer assisted semi- structured questionnaire we explored the objective and subjective parameters of the care-giver burden of 76 consenting parents of OCA who attended monthly Albino Patient Support meetings at the Lagos State University Teaching Hospital, Nigeria over a 4-year period. 

Results: Caregiver durden of parents caring for chidren with OCA is very heavy financially and Psychologically. Predictors of caregiving success are parental education was above average income slats.

Conclusion: Unmet needs of parents Include medical, educational and social support.