Healthcare professionals' perspectives on the challenges faced by parents of children with autism and recommendations to address them: A qualitative study

ObjectiveTo explore healthcare professionals (HCPs) perspectives on the challenges and needs of parents caring for children with autism spectrum disorder (ASD). DesignIn-depth individual and group interviews were conducted with HCPs providing tertiary specialist clinical services for ASD. Data was analysed using reflective thematic analysis. SettingA university-affiliated tertiary hospital in Hong Kong. ResultsWe interviewed 16 HCPs, including child psychiatrists, psychologists, psychiatric nurses, a social worker, an occupational therapist and a hospital-based teacher, who had over 10 years experience working closely with children with autism and their families. 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 childs perspective, and show appreciation and affection for their childs strengths. ConclusionsFindings 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 messagesO_ST_ABSWhat is already known on this topicC_ST_ABSO_LIParents and caregivers of children with autism face challenges around the diagnosis, including experiencing a range of emotions, coping with childrens behaviour problems, and dealing with stigma. C_LIO_LIPrevious 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. C_LI What this study addsO_LIHCPs 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. C_LIO_LIKey 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. C_LI How this study might affect research, practice, or policyO_LIPsychoeducation can be incorporated in clinicians routine practice to better support parents and caregivers of ASD and improve family wellbeing and quality of life. C_LIO_LIFuture research should explore whether strengthening relational skills can improve parent-child interactions and child behavioural outcomes, and enhance family wellbeing and quality of life. C_LI