Treating Children with ASD: The Perspective of Caregivers

Abstract

-Purpose: Treatment of Autism Spectrum Disorders (ASD) is challenging. Parents/caregivers' perspective on the effectiveness of therapies and services available to their children is important but neglected in the literature on ASD. This study investigated such perspective through questionnaire-guided interviews with a group of parents in the province of Manitoba (Canada). A secondary objective of the study was to explore how health care professionals and specifically pharmacists can assist in providing better care to children with ASD. Methods: Informed consent was obtained from all participants. Data on diagnoses and prescribed medications were collected from medical charts. Parents/caregivers completed questionnaires during interviews scheduled at their convenience. Specific questions were asked to gather caregivers/parents' perspectives on the effectiveness of medications and non-pharmacological interventions in controlling symptoms experienced by their children. Information on access to education and health services was also assessed. Common themes were identified using thematic analysis. Results: All children attended school, 88% were males, 50% experienced eating/sleeping difficulties; 69% reported Attention Deficit Hyperactivity Disorder comorbidity. Risperidone was reported to be effective in controlling aggressive behaviours. Methylphenidate and aripiprazole were often discontinued. Melatonin and occupational therapy services were said to be very useful. Access to behavioural therapy was often limited. Parents were concerned about lack of trained professionals in schools, limited understanding of their children's needs, and uncertainty for the future. Conclusions: Better education and awareness are necessary to help ASD children and their families. Pharmacists should explore opportunities to provide better services.

Effects of lockdown during corona pandemic on children with neurodevelopmental disorders-A questionnaire-based survey

“…The successful implementation of any therapeutic programme in children with NDD is dependent on perspectives of parents/primary-caregivers. 13 Hence, even though statistically insignificant, concerns about increased behavioural problems as in the index survey, need to be addressed. The perception of increased behavioural problems in children with NDD may be hypothesized to be secondary to the interplay of multiple factors such as therapy discontinuation, daily-routine alteration, monotony, excessive parental involvement, reflection of parental stress and undue expectations which all need to be addressed on an individualized fashion post lockdown relaxation.…”

Parental perspectives on the lived experience of having a child with autism spectrum disorder in Sri Lanka

“…The health and educational services for children with ASD are limited even in certain settings in the Western world. A set of caregivers in Canada have stated access to behavioural therapy was limited and they were worried about the lack of trained therapists in schools 15 .…”

A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children

“…Seven studies did not report this information. Six studies used an indicator of complexity of the autism condition (Breik et al, 2018;Brown & Brown, 2014;Davignon et al, 2014;Duker et al, 2017;Nicholas et al, 2016;Strunk et al, 2014;Thomas et al, 2018), with the majority (n = 4) of these loosely classified as 'medium to high functioning' (Breik et al, 2018;Brown & Brown, 2014;Davignon et al, 2014;Strunk et al, 2014), owing to the different measures used. Six studies did not report on condition severity.…”

“…Parents articulated challenges in their descriptions of their direct experiences of health services or as suggestions for changes, based on their experiences (Breik et al, 2018;Brown & Brown, 2014;Bultas, 2012;Davignon et al, 2014;Russell & McCloskey, 2016;Strunk et al, 2014;Thomas et al, 2018). Parents attributed the challenges to the invisible nature of the disability of autism (Nicholas et al, 2016), which meant that HCPs often did not understand the need for a modified approach.…”