Family adaptation patterns of caring for a child with autism spectrum disorder in selected households in Lusaka, Zambia

Abstract

Autism Spectrum Disorder (ASD) is a disorder of development characterised by marked impairments in social interaction, communication, and restricted repetitive and stereotyped patterns of behavior. It is considered to be a severe disability because of its persistent lifelong effects on the affected individual and his or her family. A number of researches report that parents of children with ASD show higher levels of stress, anxiety, and depression than those of normally developing children. Therefore, families’ coping mechanisms need to be explored so that health care workers can tap from them in order to help other parents. Nevertheless there is very little understanding of how families adapt and support each other in such situations. The general objective of this study was to explore adaptation patterns of family members caring for a child with ASDat UTH and Bauleni Special schools in Lusaka according to Virginia Henderson’s Activities of Daily Living (ADL). Qualitative methodology utilising an interpretive phenomenological approach was used on a sample of eighteen family members who were selected using purposive sampling. Data were collected through individual in-depth interviews and a single focus group discussion (FGD). van Manen’ssix steps of analysis were used to analyse data. Three major themes, namely: Perceived sources of parental distress; Experiences and beliefs; and Accommodating the needs of a child with ASD, emerged from the data. The major themes were supported by several subthemes. The implications of the findings on practice are that most parents were greatly distressed by their children’s behavioural disorders and made significant adaptation changes in order to cope with the situation. Delays in diagnosis occurred due to lack of knowledge of ASD amongst health care workers and negative cultural beliefs resulting into late school placement. It was also noted that the ability for families to accommodate their child with ASD affected their adaptation. It is therefore recommended that health workers utilise successful adaptation patterns to help parents and families with a child with ASD. Key words: Adaptation, Autism Spectrum Disorder, Families, Child