Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates: comparison between mothers and fathers

Vernhet, Christelle; Michelon, Cécile; Dellapiazza, Florine; Rattaz, Cécile; Roeyers, Herbert; Picot, Marie‐Christine; Baghdadli, Amaria; Chabaux, Catherine; Chatel, C.; Cohen, David; Damville, Emmanuel; Geoffray, Marie‐Maude; Gicquel, Ludovic; Jardri, Renaud; Maffre, Thierry; Novo, Alexandre; Roxane, Roxane; Orêve, Marie-Joëlle; Poinso, François; Pottelette, Julien; Robel, Laurence; Rolland, Catherine; Schoenberger, Marie; Sonié, Sandrine; Speranza, Mario; Vespérini, Stéphanie

doi:10.1007/s11136-021-03045-3

Cited by 23 publications

(11 citation statements)

References 49 publications

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“…Previously, mothers and/or primary caregivers have noted lower QoL and increased parenting stress compared to fathers and/or secondary caregivers (McStay et al, 2014; Vernhet et al, 2022; Wang et al, 2020). Nevertheless, the current findings indicate that while both primary and secondary caregivers of school‐aged Autistic children experience comparable QoL, primary caregivers reported higher perceived parenting stress.…”

Section: Discussionmentioning

confidence: 97%

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children

Davy,

Barbaro,

Unwin

et al. 2024

Autism Research

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Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school‐aged Autistic children. Eighty‐eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7‐ to 12‐years) participated in this cross‐sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child‐rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well‐being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.

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Section: Discussionmentioning

confidence: 97%

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children

Davy,

Barbaro,

Unwin

et al. 2024

Autism Research

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“…One limitation of the present study is that most participants were mothers, meaning that our findings regarding the parental experience of SD may not be representative of the experience of fathers. Future research should therefore explore the experiences of fathers, as any differences may have implications for the support offered to parents (25). However, it may also be telling that most respondents were mothers, as some mothers commented on how differently their partner was treated by professionals, and others called for further research on the topic to explore whether the treatment that mothers experience in this context may be underpinned by systemic misogyny.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“I felt shamed and blamed”: An exploration of the parental lived experience of School Distress

Mullally

Connolly

2023

Preprint

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Background - School Distress (SD) refers to a young person's difficulty attending school due to the emotional distress experienced as a result of school attendance. It is thought to affect around 1% of school-aged children, although prevalence rates are higher amongst autistic children and young people (CYP). To date, there is limited research into the impact that having a child who experiences SD has on parents, carers, and other family members. Aims - We aim to describe the lived-experience of the parents of CYP experiencing SD in the UK, and quantify the impact of the current status quo on their physical and mental health, and lives more broadly. Method - A concurrent embedded mixed-method design was adopted. The survey link was shared widely via social media in February 2022 and participants were recruited via volunteer-sampling. Participants consisted of parents of CYP who are currently experiencing (n=738), or who had previously experienced (n=209), extreme distress whilst attending school, parents of age-matched CYP without school attendance difficulties (n=149), and parents of CYP who had never attended a school setting (n=25); giving a total of 1121 participants. All participants were currently living in the UK and 97% were mothers. Results - Findings revealed that the experience of SD can have a devastating impact on the mental health of parents, with over half of parents developing a new mental health condition since their child's difficulties began (51.7%). Parents supporting CYP with SD had significantly higher levels of all the negative emotions measured (i.e., anger, anxiety, sadness, disgust, and fear), alongside significantly lower levels of positive emotions (i.e. relaxation and happiness) than parents of age-matched control CYP who did not experience school attendance difficulties. Heightened daily anxiety, stress, and low mood were pervasive, and a significant deleterious impact was reported across all aspects of the parents' lives, including their careers and finances, and their other children. In addition, parents of children experiencing SD reported overwhelmingly negative treatment from professionals, whereby they frequently reported feeling blamed for their child's difficulties, threatened with fines or court action, spoken to in a dismissive and critical manner, and feeling threatened, vulnerable, and disbelieved following interactions with school staff and other professionals (including Children's Social Services, Local Authorities, and CAMHS staff). A lack of support from family, friends, other parents, and work colleagues were also mentioned by many, although others described family, friends, and other parents with similar lived experiences to be their most important sources of support. Finally, parents of CYP currently experiencing SD rated the experience of a child school-refusing as the second most threatening life event, superseded only by the death of a first-degree relative, including a child or a spouse. Conclusions - This study highlights a bleak, adversarial, and lonely picture for the parents of CYP struggling to attend school. More specifically, the findings depict a system rife with parental blame; a system that appears to isolate parents through hostile, threatening, and punitive actions. A wider lack of societal understanding of the experience of School Distress further compounds this dearth of support for parents, placing parental mental health in further peril.

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“…Up to 50% of parents report suffering from anxiety (Kuusikko-Gauffin et al, 2013), and up to 60% of parents suffer from depression (Carter et al, 2009). In particular, mothers usually bear more stress than other family members (Ingersoll & Dvortcsak, 2006;Ang & Loh, 2019;Vernhet et al, 2021). Also, the more complex the behavioral problems of children with autism, the more pressure their families feel (Miranda et al, 2019).…”

Section: The Impact and Challenges Of Autism On Familiesmentioning

confidence: 99%

Parents' perceptions of autism and their challenges in China

Xiao

Cui

et al. 2022

Adv Dev Educ Psychol

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Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by social communication deficits and restricted or repetitive behaviors. Parents play a significant role in research, clinical practice and policy development on autism. Parents' perceptions of autism can affect not only their own well-being, but also their children's development. Nevertheless, few studies have examined the parents’ perception of autism in Chinese context. The parents’ perception of autism questionnaire was applied to collect information from 171 families of children with ASD, mainly to investigate the knowledge of autistic children and the difficulties the family facing. The following conclusions were drawn from this study: (1) Mother as the primary caregiver for children with ASD; (2) Parents’ perception of ASD were various parents of autistic children have a good understanding of the symptoms, causes, age of onset and interventions, and their expectations of the prognosis and the future life of their autistic children are high; (3) The difficulties that faced by the parents are mainly composed of low social acceptance, family pressure and concerns about the effectiveness of interventions for their children. In consideration of the future development of children with autism and the mental health development of their parents, it is particularly crucial to support their parents with multifaceted support.

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Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates: comparison between mothers and fathers

Cited by 23 publications

References 49 publications

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children

“I felt shamed and blamed”: An exploration of the parental lived experience of School Distress

Parents' perceptions of autism and their challenges in China

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