Background - Orofacial clefts (OFCs) are common birth defects that may impose a large burden on the health and psychosocioeconomic well-being of affected individuals and families. This study aims to identify qualitative factors that affect the quality of life (QOL) of family caregivers of children with OFCs.
Methods - A mixed-method study in which family caregivers of OFCs children were consecutively recruited from cleft clinics over a 3-month period. Quantitative data were analyzed using SPSS version 17 and focus group discussion by framework analysis.
Results - A total of 107 caregivers participated in the entire study, and 24 caregivers participated in the focus group discussions. About 50% of the children had cleft lip and palate (CLP), 28% with cleft lips only (CL) and 23.4% with cleft palate only (CP). Poor access to specific information and lack of empathy of professionals affected the quality of life and delivery of family-centered care.
Conclusions - To improve the quality of life of family caregivers, individual-focused counseling sessions should be organized for caregivers soon after birth. This will provide an opportunity to discuss the laid out plans for supportive care. It will also be as an avenue to address the arising social issues by health professionals and counselors.
- Family caregivers
- Focus group discussion
- Orofacial clefts
- Quality of life