Healthcare professionals’ perspectives on the challenges faced by parents of children with autism and recommendations to address them: A qualitative study
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Objective
To explore healthcare professionals’ (HCPs) perspectives on the challenges and needs of parents caring for children with autism spectrum disorder (ASD).
Design
In-depth individual and group interviews were conducted with 16 HCPs with over 10 years’ experience working closely with children with autism and their families. HCPs interviewed provided tertiary specialist clinical services for ASD across a range of roles, including child psychiatrists, psychologists, psychiatric nurses, a social worker, an occupational therapist and a hospital-based teacher. Data was coded inductively and analysed using reflective thematic analysis.
Setting
A university-affiliated tertiary hospital in Hong Kong.
Results
Three themes were generated: (1) Emotional strain and its negative impact on parenting practices, (2) Misunderstanding about ASD and its management, and (3) Acknowledgement and acceptance of the ASD diagnosis. HCPs observed that challenges faced by parents and caregivers of ASD were often shaped by misinformation and misinterpretation of child behaviours and needs, as well as unrealistic expectations based on stereotypes and norms. HCPs provided recommendations for parents and caregivers, highlighting the need to strengthen relational skills to connect with their children, take their child’s perspective, and show appreciation and affection for their child’s strengths.
Conclusions
Findings from this study highlighted the need for psychoeducation and identified the potential loci and timing for intervention to better support parents and caregivers of ASD in overcoming challenges and building stronger relationships with their children. This has important practical implications for mitigating bidirectional mutual perpetuation of parental stress and child behavioural and emotional problems.
Key messages
What is already known on this topic
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Parents and caregivers of children with autism face challenges around the diagnosis, including experiencing a range of emotions, coping with children’s behaviour problems, and dealing with stigma.
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Previous studies on caregiving for children with autism have mostly centred on parents’ and caregivers’ perspectives, but they may not always have the skills and experiences to recognise exactly what they are struggling with.
What this study adds
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HCPs observed that misunderstandings about ASD and its management is a key challenge faced by parents and caregivers, which was shaped by misinformation, misinterpretation of child needs, and misconstrued behavioural reinforcement.
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Key recommendations from HCPs for parents and caregivers to overcome challenges include improving relational skills, cultivating curiosity in parenting, setting consistent boundaries and limits, and prioritising self-care.
How this study might affect research, practice, or policy
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Psychoeducation can be incorporated in clinicians’ routine practice to better support parents and caregivers of ASD and improve family wellbeing and quality of life.
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Future research should explore whether strengthening relational skills can improve parent-child interactions and child behavioural outcomes, and enhance family wellbeing and quality of life.
