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The purpose of this review was to scope the quantity and methodological characteristics of the current literature examining parent and caregivers' perspectives of specific learning disorder (SLD) diagnosis, synthesise key findings and highlight gaps in the current literature. A systematic search was conducted for the period January 2013 to March 2023. Twenty‐three articles, representing 1796 parents and caregivers across seven countries, underwent data extraction. The review highlighted considerable variability regarding the main aim and scope of each included study and that most studies used qualitative or mixed method methodology. Three central parts of the diagnostic experience were identified: pathway to assessment, assessment process, and advocating and coordinating support post‐diagnosis. A final theme, broader social and political issues, was also identified. The findings highlight that parents of children with SLDs experienced a similar battle to obtain a diagnosis and access post‐diagnostic support as parents of children with other neurodevelopmental disorders. This provides some evidence that, internationally, parent needs in the time surrounding SLD diagnostic assessment are not being met, with substantial barriers to timely assessment and inadequate post‐diagnosis support. Future research and implications for practice are explored.
The purpose of this review was to scope the quantity and methodological characteristics of the current literature examining parent and caregivers' perspectives of specific learning disorder (SLD) diagnosis, synthesise key findings and highlight gaps in the current literature. A systematic search was conducted for the period January 2013 to March 2023. Twenty‐three articles, representing 1796 parents and caregivers across seven countries, underwent data extraction. The review highlighted considerable variability regarding the main aim and scope of each included study and that most studies used qualitative or mixed method methodology. Three central parts of the diagnostic experience were identified: pathway to assessment, assessment process, and advocating and coordinating support post‐diagnosis. A final theme, broader social and political issues, was also identified. The findings highlight that parents of children with SLDs experienced a similar battle to obtain a diagnosis and access post‐diagnostic support as parents of children with other neurodevelopmental disorders. This provides some evidence that, internationally, parent needs in the time surrounding SLD diagnostic assessment are not being met, with substantial barriers to timely assessment and inadequate post‐diagnosis support. Future research and implications for practice are explored.
Objectives This study aimed to understand how parents describe the most challenging behaviors exhibited by their children diagnosed with autism and/or ADHD, how those behaviours impact their family, and whether challenges are directly related to the core characteristics of these conditions. Methods A total of 258 New Zealand parents of children diagnosed with autism (n = 98), ADHD (n = 85), or both conditions (n = 75) answered an open-ended question about what child behaviour(s) provide the most challenge for their child/family’s life. Responses were coded into 13 domains. Results The areas of greatest challenge fitted with the core characteristics of the respective diagnoses, but the co-occurring group favoured greater challenges in the autism domain. Emotional dysregulation challenges were substantial across all three groups. A significant predictor of parents reporting challenges in the autism and internalising domain was a higher age. Conclusions These results have the potential to inform more targeted supports for children and families by considering what is important to parents.
The quality of life of autistic children and their parents is impacted by the stress they experience, their coping strategies and the availability of professional health, social and educational support services. Recent changes in the structural organisation of child disability professional supports in Ireland mean that in-depth knowledge about current experiences of parenting autistic children is necessary. This qualitative study explored parents’ perceptions and experiences regarding their challenges, stress levels, coping strategies and professional support services. Semi-structured in-depth interviews were conducted with six parents of autistic children aged 4 to 16 years. Thematic analysis identified three core themes: ‘The Autism Journey: Challenges and Rewards’, ‘Navigating a Flawed Support System’ and ‘The Importance of Social and Professional Supports’. Findings emphasised that parents face endless challenges in caring for autistic children. Dealing with autism-based support services, however, is the greatest stressor experienced by parents. It revealed that the system to access services is experienced as difficult and parents consider it is operating inadequately. This reveals a pressing need to improve systems that provide professional support services to autistic children and their families. Lay abstract Parenting an autistic child can be a challenging experience. Parents of autistic children often require social and professional support to cope with the various stresses they encounter and to ensure their children achieve their optimal potential. Recently, the way professional supports are organised in Ireland has changed. Very little previous recent research has investigated parents’ experiences of raising an autistic child in Ireland. This study interviewed six parents asking them about their challenges, stress levels, coping strategies and their perceptions regarding professional support services. The data from these interviews were organised into themes. A major finding was that parents felt the healthcare system was failing to provide help for their children, and that support services in Ireland can cause more parental distress than dealing with their child’s difficulties. Other causes of parental stress included the child’s behaviours that they found challenging, stigma, a lack of awareness about autism and isolation. This study shows that both autistic children and their parents are at increased risk of developing mental health problems due to a flawed healthcare system that requires improvement urgently.
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