ABSTRACT
INTRODUCTION: Research on the challenges of raising a child with autism is mostly conducted in Europe, North America and Australia, and has revealed that parents have to come to terms with living with a lifelong developmental disability. In addition, parents are faced with numerous concerns, such as caring burdens, poor prognosis, and negative public attitudes. Virtually no research has been conducted in Africa on this subject. METHODS: Thirty-seven interviews and eight focus group discussions were conducted with parents of children with autism and professionals in regular contact with these parents from rural and urban counties of the Kenyan coast. The study investigated challenges faced by parents and how they cope with those challenges. A purposive-convenience sampling procedure was used in selecting the study participants. A digital recorder was used to record all the interviews and focus group discussions. Transcriptions were done in Swahili, translated into English, and then imported to the NVivo software program for content analysis. RESULTS: The results indicate that parents of children with autism on the Kenyan coast experience common challenges including stigma, lack of appropriate treatment, financial and caring burdens regardless of their religious and cultural backgrounds. Coping strategies applied by parents comprised problem-focused aspects that involve diet management and respite care, and emotion-focused aspects that consist of beliefs in supernatural powers, prayers and spiritual healing. CONCLUSIONS: This qualitative study reveals a range of challenges that could have significant impact when caring for a child with autism. Coping strategies applied by parents target the physical health of the child and the psychological wellbeing of the parent. Consideration of these outcomes is vital as they could impact the initiation of a community-based rehabilitation service delivery in rural settings where parents play an active role.
Subject(s)
Adaptation, Psychological , Autistic Disorder/psychology , Parents/psychology , Adult , Aged , Caregivers/psychology , Female , Health Expenditures , Health Personnel/psychology , Health Services Accessibility/organization & administration , Humans , Interviews as Topic , Kenya , Male , Middle Aged , Religion , Respite Care , School Teachers/psychology , Social Stigma , Social Workers/psychology , Spiritual TherapiesABSTRACT
OBJECTIVE: To explore parents' and professionals' perceived causes and treatment of Autism Spectrum Disorders (ASD) on the Kenyan Coast. METHODS: In-depth interviews and focus group discussions using guiding questions were utilized in data collection. One hundred and three participants, who included parents of children with ASD, special needs teachers, clinicians, and social workers from diverse cultural background, participated in this study. The interviews and focus groups were recorded, transcribed verbatim and then translated to English. Themes were generated using content analysis. RESULTS: Preternatural causes were mentioned and included evil spirits, witchcraft, and curses. Biomedical causes comprised infections, drug abuse, birth complications, malnutrition, and genetic related problems. Treatment varied from traditional and spiritual healing to modern treatment in health facilities, and included consultations with traditional healers, offering prayers to God, and visits to hospitals. CONCLUSIONS: The results suggest that regardless of cultural backgrounds, people on the Kenyan Coast have similar views on perceived causes and treatment of ASD. These findings provide valuable conceptual understanding for professionals when planning and implementing community based rehabilitation interventions targeting children with ASD within a local context.
