Development of a psycho-social intervention for reducing psychological distress among parents of children with intellectual disabilities in Malawi

Background The burden of intellectual disabilities in low and middle income countries (LMIC) is high and is associated with parental psychological distress. There are few services for children and parents in most developing countries and few interventions have been created that target the psychological issues among parents of such children. This study aimed to develop a contextualized intervention to provide psychological support for parents of children with intellectual disabilities in an African setting. Methods Six steps were adopted from the Medical Research Council framework for designing complex interventions. This include: literature review of similar interventions and models, qualitative studies to gain insights of lived experiences of parents of such children, a consensus process with an expert panel of professionals working with children with disabilities and piloting and pre-testing the draft intervention for its acceptability and practicability in this settings. Results 21 intervention modules were found from a systematic search of the literature which were listed for possible use in our intervention along with four themes from our qualitative studies. An expert panel formed consensus on the eight most pertinent and relevant modules for our setting. This formed the intervention; Titukulane. This intervention was piloted and found to have high acceptability and practicability when contextualized in the field. Conclusion The use of a systematic framework for designing a complex intervention for supporting the mental health of parents of children with disabilities enables good acceptability and practicability for future use in low resource settings.