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The Experiences Impacting on the Quality of Life of Mothers of Children with Intellectual Disability and Autism Spectrum Disorder: A Qualitative Study
Research has identified that mothers of children with autism spectrum disorder (autism) and intellectual disability (ID) have a lower Quality of Life (QoL) than other mothers.
Objectives:
We aimed to:
- explore QoL in mothers of children with autism and ID
- identify the factors which impacted their QoL
- document the mothers suggestions of services to improve their QoL
Methods:
Hermeneutic phenomenology provided the framework for this qualitative study. Sixteen mothers of 11-24 year old children with autism and ID undertook in-depth interviews of approximately one hour. Individually, the first author asked mothers open-ended questions pertaining to their lived experience of caring for their child or children with autism and ID. The mothers were also asked to reflect on how they considered their QoL might be and might have been improved. To elicit the essences of their experiences, their responses were analysed for significant statements which were clustered together into categories and abstracted to themes.
Results:
The three themes identified were Coping with aspects of the child’s disability, Adapting to a changed lifestyle and Surviving the challenges and savouring the rewards. Challenging behaviours were most commonly described as the most difficult aspect of the child’s disability. Adapting to a life consumed by disability and increased social isolation were the most frequently difficulties of the mothers’ changed lifestyle. Most often, surviving the challenges involved detriments to employment, health and relationships. Rewards enjoyed by mothers stemmed from their love for their child, their own personal development, their child’s progress and their increased opportunities to meet exceptional people. Suggested services to improve QoL in these mothers included access to meditation courses, regular comprehensive sitter services and an informal mentoring scheme. At the time of diagnosis, parents might be provided with a directory which detailed services in the state of residence and information about the disorder.
Conclusions:
Mothers of children with autism and ID experience a range of factors that impact their QoL. To ensure that they are best supported to continue their important role and enjoy an improved QoL, their lived experience and suggestions must be recognised in the planning of all support services and interventions.