Poster #49 - Parenting a child living with autism spectrum disorder: Exploring experiences of caregivers in Lusaka, Zambia

• In Event: 3-053 - Poster Session 10
  In Poster Session: PS 10 Section - Developmental Disabilities

Integrative Statement

This study contributes to the ongoing discussion about autism spectrum disorders (ASDs) in Zambia. Most research on autism spectrum disorders has been conducted in affluent countries, which have extensive professional support services (Samadi & McConkey, 2011). To date, few studies have explored parental experiences with children living with autism in the Zambian Society. Literature has shown ASD poses greater threat to the wellbeing of caregivers as they are pulled into a vortex of a restricted and repetitive way of being in the world (Cashin, 2004; Seltzer, Krauss, Orsmond, & Vestal, 2001). Therefore, the current study explored caregivers’ experiences of children living with ASD. It was envisaged that understanding better their experiences would help policy makers and others to develop important emotional and other support for caregivers taking care of children living with autism.
Data were collected as part of a larger intervention study. To understand parents lived experiences, twelve caregivers with children diagnosed with ASD were independently interviewed using an open-ended, semi-structured interview [Lived Experiences Interview (LEI), Sichimba, 2018]. The LEI focused on their experiences during the children’s diagnosis periods, reactions of significant others (such as spouse, relatives and neighbours), school placement as well as the impact of the children’s conditions on the parents’ lives. Participants varied in age, with the mean age of mothers being 37 years and the mean age of their children was 7 years. An inductive, content analysis was used to identify patterns and emergent themes. All data were coded independently by two researchers using well-established qualitative coding techniques to achieve reliability. Thereafter, all discrepancies were resolved through consensus coding.
The study’s findings indicated that caregivers of children living with ASD underwent different experiences which included: (1) difficulties coming to terms with the diagnosis, (2) lack of knowledge on autism; (3) being blamed for the child’s condition; (4) rejection; (5) loss of social life; (6) difficulties finding school placement; and (7) anxieties about child’s future.
This study highlights that each caregiver’s experience is unique and that addressing the different needs within their experience is cardinal. While some themes are in line with parental experiences described in the literature (Woodgate, Ateah, & Secco, 2008; Keenan, Dillenburger, Doherty, Byrne & Gallagher, 2010), others may be more specific to the Zambian context (e.g., attribution of cause). These findings have implications for future research and indicate a greater need to further understand socially constructed notions of disabilities like ASD and how these affect caregivers' experiences. Drawing on the narratives of caregivers’ lived experiences, it is concluded that information gained from this study will help professionals to develop appropriate support systems for parents taking care of children living with ASD.

Authors

• Francis Sichimba, The University of Zambia
  Presenting Author

• Haatembo Mooya, The University of Zambia
  Non-Presenting Author

• Jillian Pierucci, St. Mary’s University
  Non-Presenting Author

• Monica Perez, University of Notre Dame
  Non-Presenting Author

• Gabriela Aquino, St. Mary's University
  Non-Presenting Author

• Alexandra Pearson, St. Mary's University
  Non-Presenting Author

• Sylvia Mwanza, The University of Zambia
  Non-Presenting Author