From ‘Parent’ to ‘Expert’: How Parents of Children with Autism Spectrum Disorder Make Decisions About Which Intervention Approaches to Access

Edwards, Amelia; Brebner, Christine; McCormack, Paul; MacDougall, Colin

doi:10.1007/s10803-018-3473-5

Cited by 31 publications

(30 citation statements)

References 24 publications

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“…Research on the relationship between parent factors (e.g., parenting-related stress) and child-focused interventions (e.g., EIBI, parent training) is still in the early stages, and presents a number of challenges given the transactional nature of the relationship between child behaviour, response to intervention, and parent and family adaptive functioning. More work is needed to understand the characteristics of intervention approaches that support family adaptive functioning (e.g., intensity, delivery mode) and the factors that result in parents becoming effective advocates for their children (28). However, the existing literature already suggests potential intervention targets (e.g., child problem behavior, parent expectations) and intervention approaches (e.g., parent-clinician partnership) that may improve family adaptive functioning.…”

Section: Discussionmentioning

confidence: 99%

“…Parents of children with ASD are involved in identifying developmental difficulties, arranging developmental testing and diagnostic evaluations with specialists, and joining with an interdisciplinary team to implement early intervention (27). Parents who are highly stressed, overwhelmed, or under-resourced may be less likely to initiate intervention for their children, or be less able to fully engage in the learning process that early ASD intervention requires of parents (28). In contrast, parents who are well-supported and ready to learn and adapt will likely experience the best outcomes.…”

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confidence: 99%

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The effects of early autism intervention on parents and family adaptive functioning

2019

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This review describes the effects of intervention for young children with autism spectrum disorder (ASD) on parents. Like all children, children with ASD bring both negative and positive experiences for parents and families-from increased resource needs, to higher levels of parenting-related stress, to positive personal growth for family members. It is increasingly recognized that, although children with ASD are the primary targets of early ASD intervention, ASD intervention also impacts parents. From the time emerging developmental concerns begin to be identified, through the process of obtaining a diagnosis and initiating services, parents play a central role in addressing the needs of young children with ASD, including implementing and supporting early intervention. Parents experience the impact of intervention directly, through interaction with providers within the health care and educational systems. Parents also experience indirect impacts of ASD intervention due to accelerated developmental progress of children who are benefitting from services and when children make slower progress than expected or have challenging behaviors. Parental stress and psychological well-being are legitimate targets of intervention and compelling research objectives, needing no additional justification. However, parents are also the major contributors to family adaptive functioning-the activities families employ to support positive outcomes for children with ASD (e.g., family-orchestrated child experiences, parent-child interaction, child health and safety functions; Guralnick, 1997). A parent's ability to carry out adaptive functions is, in part, related to their levels of stress and psychological well-being. Thus, there is a transactional process in which parents are both impacted by and have an impact on ASD interventions for their child. Evaluating the effect of ASD intervention on parents is needed to develop new strategies for helping parents and children with ASD reach their full potential. This review will provide an overview of research on the impact of early ASD intervention on parents. Evidence regarding the impact of three types of intervention (i.e., early intensive behavioral intervention, parent-implemented intervention, and programs directly targeting parent stress) on parent well-being and family adaptive functioning will be reviewed. Potential moderators of the impact of ASD intervention on parents and family adaptive functioning will be discussed. We conclude that research on the impact of ASD intervention on parents of young children with ASD is a promising avenue for improving the lives of children with ASD and their families.

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Section: Discussionmentioning

confidence: 99%

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confidence: 99%

The effects of early autism intervention on parents and family adaptive functioning

2019

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“…Many parents who took this journey developed a solid belief in the value of the strategies and an appreciation for improvements that their child made. Edwards et al (2018) described a journey taken by parents from the disorientating experience of diagnosis through initial high expectations and a wish to minimise the impact of ASD, through to an acceptance of the lifelong nature of the condition and a development of expertise in their own child. This description fits with the narrative of some of our interviewees who described how PACT helped them along a similar journey.…”

Section: Mechanism Of Changementioning

confidence: 99%

Parent perceptions of participation in a parent-mediated communication-focussed intervention with their young child with autism spectrum disorder

Leadbitter

Macdonald

Taylor

et al. 2020

Autism

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Paediatric Autism Communication Therapy is a parent-mediated, video-aided, communication-focussed intervention for young children with autism spectrum disorder. It has been shown in a UK randomised controlled trial to lead to improvements in parent–child communication and family quality of life, together with a sustained reduction in child autism symptom severity. This qualitative study examined parental perceptions of their participation in Paediatric Autism Communication Therapy within the context of the randomised controlled trial. Semi-structured interviews were carried out with 18 parents within 12 months of completion of the therapy. The thematic analysis provides insights into parents’ hopes, expectations, and learning processes when working with Paediatric Autism Communication Therapy therapists and carrying out daily practice in the home. Parents reported positive changes in their interaction and relationship with their child and improvements to their child’s communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnostic therapy. Practical difficulties were also emphasised. Implications for the clinical practice of parent-mediated interventions with young children with autism spectrum disorder are discussed. Lay abstract Paediatric Autism Communication Therapy is an intervention for young children with autism spectrum disorder that focuses on parent–child communication. In Paediatric Autism Communication Therapy, the therapist and parent watch videos of the parent and child playing together. The therapist coaches the parent to carefully observe the child’s communication and to interact with their child in a more sensitive and responsive way. Parents are encouraged to use the strategies with their child at home. Paediatric Autism Communication Therapy has been shown to lead to long-term improvements in parent–child communication and family quality of life. This study aimed to explore parents’ perceptions of their participation in Paediatric Autism Communication Therapy. Interviews were carried out by an independent researcher with 18 parents. Parents discussed the learning processes they went through when working with Paediatric Autism Communication Therapy therapists and carrying out home practice. Some parents described initial doubts about the approach and hesitations about being videoed and analysing video material. In time, most parents came to really value the therapy and their relationship with the therapist. They reported positive changes in their interaction and relationship with their child and improvements to their child’s communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnosis therapy. Practical difficulties were also emphasised, including the time commitment, accessibility of therapy venues and difficulties in occupying the child during therapist–parent discussion. Implications for the clinical practice of parent-mediated interventions are discussed.

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“…This is pertinent as user involvement in planning and delivering educational interventions become embedded in research. 42 In this study, we will assess whether a brief peer co-led parenting programme, developed and provided in collaboration between user representatives and health personnel, would be effective in reducing disruptive behaviour and ADHD symptoms in school-aged children. [43][44][45] Aims and objectives This study aims to assess the acceptability, feasibility and estimated sample size in an RCT, comparing an ADHD peer co-led educational programme conducted alongside treatment as usual (TAU).…”

Section: Open Accessmentioning

confidence: 99%

Effects of a peer co-facilitated educational programme for parents of children with ADHD: a feasibility randomised controlled trial protocol

Mundal

Gråwe

Hafstad³

et al. 2020

BMJ Open

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IntroductionSignificant numbers of children with attention deficit hyperactivity disorder (ADHD) display problems that cause multiple disabilities, deficits and handicaps that interfere with social relationships, development and school achievement. They may have multiple problems, which strain family dynamics and influence the child’s treatment. Parent activation, described as parents’ knowledge, skills and confidence in dealing with their child’s health and healthcare, has been shown to be an important factor in improving health outcomes. Research suggests that parents need edification to learn skills crucial to the treatment and management of their children’s healthcare. Promoting positive parenting techniques may reduce negative parenting factors in families. This study aims to assess the acceptability, feasibility and estimated sample size of a randomised controlled trial (RCT) comparing an ADHD peer co-led educational programme added to treatment as usual (TAU).Methods and analysisUsing a randomised waitlist controlled trial, parents of children aged 6–12 years newly diagnosed with ADHD, and referred to a child mental health outpatient clinic in Mid-Norway, will receive TAU concomitant with a peer co-facilitated parental engagement educational programme (n=25). Parents in the control group will receive TAU, and the educational programme treatment within a waitlist period of 3–6 months (n=25). Parent activation, satisfaction, well-being, quality of life and treatment adherence, will be assessed at baseline (T0), 2 weeks (T1) pre–post intervention (T2, T3) and at 3 months follow-up (T4). Shared decision making, parents preferred role in health-related decisions and involvement, parent-reported symptoms of ADHD and child’s overall level of functioning will be assessed at T0 and T4. Such data will be used to calculate the required sample size for a full-scale RCT.Ethics and disseminationApproval was obtained from the Regional Committee for Medicine and Health Research Ethics in Mid-Norway (ref: 2018/1196). The findings of this study are expected to provide valuable knowledge about how to optimise family education and management of ADHD and will be disseminated through presentations at conferences and publication in peer-reviewed journals.Trial registration numberNCT04010851.

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From ‘Parent’ to ‘Expert’: How Parents of Children with Autism Spectrum Disorder Make Decisions About Which Intervention Approaches to Access

Cited by 31 publications

References 24 publications

The effects of early autism intervention on parents and family adaptive functioning

The effects of early autism intervention on parents and family adaptive functioning

Parent perceptions of participation in a parent-mediated communication-focussed intervention with their young child with autism spectrum disorder

Effects of a peer co-facilitated educational programme for parents of children with ADHD: a feasibility randomised controlled trial protocol

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