Caring for an individual with autism disorder: A qualitative analysis

Phelps, Kenneth W.; Hodgson, Jennifer L.; McCammon, Susan L.; Lamson, Angela L.

doi:10.1080/13668250802690930

Cited by 72 publications

(53 citation statements)

References 19 publications

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“…Research into the positive impacts of ASD on families is encouraging but is only relatively recent. Furthermore, there are a range of areas that would benefit from further research, such as Resilience, Traumatic Growth, family connectedness, spiritual development, appreciation of life and enrichment of relationships (Brewin et al, 2008;Phelps et al, 2009a). This recommendation is in line with previous calls for positive psychology approaches within developmental disabilities research (Bayat, 2007;Hastings and Taunt, 2002;Pakenham et al, 2011).…”

Section: Family-focused Asd Research To Date and Its Limitationssupporting

confidence: 62%

“…As discussed, initially, a diagnosis of ASD for a family member may be perceived as a distressing loss as it involves realisations that they will not develop typically, possible confusion around the individual's identity and re-evaluating expectations and responsibilities of all family members (O'Brien, 2007). However, coupled with this may be experiences of relief, validation and over time understanding and acceptance of having a family member with ASD (Phelps et al, 2009a;Samios et al, 2012) …”

Section: Resilience and Traumatic Growthmentioning

confidence: 99%

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Family-focused autism spectrum disorder research: A review of the utility of family systems approaches

Cridland

Jones

Magee

et al. 2013

Autism

134

113

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A family member with an autism spectrum disorder presents pervasive and bidirectional influences on the entire family system, suggesting a need for family-focused autism spectrum disorder research. While there has been increasing interest in this research area, family-focused autism spectrum disorder research can still be considered relatively recent, and there are limitations to the existing literature. The purpose of this article is to provide theoretical and methodological directions for future family-focused autism spectrum disorder research. In particular, this article proposes Family Systems approaches as a common theoretical framework for future family-focused autism spectrum disorder research by considering theoretical concepts such as Boundaries, Ambiguous Loss, Resilience and Traumatic Growth. We discuss reasons why these concepts are important to researching families living with autism spectrum disorder and provide recommendations for future research. The potential for research grounded in Family Systems approaches to influence clinical support services is also discussed. Family-focused autism spectrum disorder research: A review of the utility of family systems approaches Elizabeth K Cridland, Sandra C Jones, Christopher A Magee and Peter Caputi Abstract A family member with an autism spectrum disorder presents pervasive and bidirectional influences on the entire family system, suggesting a need for family-focused autism spectrum disorder research. While there has been increasing interest in this research area, family-focused autism spectrum disorder research can still be considered relatively recent, and there are limitations to the existing literature. The purpose of this article is to provide theoretical and methodological directions for future family-focused autism spectrum disorder research. In particular, this article proposes Family Systems approaches as a common theoretical framework for future family-focused autism spectrum disorder research by considering theoretical concepts such as Boundaries, Ambiguous Loss, Resilience and Traumatic Growth. We discuss reasons why these concepts are important to researching families living with autism spectrum disorder and provide recommendations for future research. The potential for research grounded in Family Systems approaches to influence clinical support services is also discussed.

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Section: Family-focused Asd Research To Date and Its Limitationssupporting

confidence: 62%

Section: Resilience and Traumatic Growthmentioning

confidence: 99%

Family-focused autism spectrum disorder research: A review of the utility of family systems approaches

Cridland

Jones

Magee

et al. 2013

Autism

134

113

View full text Add to dashboard Cite

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“…Though many parents report that their relationships improve after their children are diagnosed, they also share that they experience significant relationship strain (Taylor, Miller et al 1999, Phelps, Hodgson et al 2009). The conflicts result from different points of view regarding how to take care of their child, anxiety about their child's future, disagreement over services, different coping styles, and lack of time for each other (Phelps, Hodgson et al 2009, Hock, Timm et al 2012.…”

Section: Experience Of Family Members Of People With Asdmentioning

confidence: 99%

“…Parents of children with ASD report a high level of confusion, anxiety, tiredness, disappointment and sadness during the process of finding a diagnosis for their children (Gray 2001, Marcus, Kunce et al 2005, Altiere and von Kluge 2009. They may also experience physical and psychological exhaustion, economic burden, loss of career, stigma towards their children and themselves, social isolation, family conflicts and family separation when taking care of their children and the need to advocate for their child's education and interventions (Green 2003b, Altiere and von Kluge 2009, Phelps, Hodgson et al 2009). …”

Section: Chapter 1: Introductionmentioning

confidence: 99%

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Understanding autism spectrum disorder in Hanoi, Vietnam

Ha¹

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Autism spectrum disorder (ASD) is now recognised as a public health concern worldwide with the reported prevalence substantially increasing. However, the understanding of this condition in Vietnam and in other low and middle income countries is still very limited. This study aims to understand the socio-cultural construction of ASD in Hanoi, Vietnam, and the experiences of children living with ASD. This study attempts to achieve its aim through objectives of (1) exploring the meanings attached to and the representations of ASD within the social and cultural context of Vietnam, (2) describing services and social supports available as well as barriers preventing children with ASD and their parents accessing services, (3) describing the lived experience of parents of children with ASD, and (4) exploring the utility of using 'photovoice' to engage children with ASD and communicate their experiences.Informed by theoretical frameworks of social constructionism, critical medical anthropology and disability studies, I conceptualise ASD within a set of multi-level interactions between individuals, families, community and society. My fieldwork took from July 2011 to end of May 2012 in Hanoi,Vietnam. This study employed a range of methodologies of ethnography and participatory action research. These included participant observation, photovoice with nine children with ASD and six parents, and in-depth interviews with 27 parents and 17 key informants. In addition, I also conducted an online self-administered survey with 125 parents, and collected secondary data.This study describes various limitations in assessment and diagnosis of ASD in Vietnam. These include the lack of clinical guidance for assessment and monitoring the quality of assessment at clinics; a lack of developmental screening for young children; a rushed and perfunctory process for the assessment and diagnosis of children; and poor communication between health professionals in assessment teams, and between professionals and parents of children with ASD. These result in a lack of early identification, a pattern of overdiagnosis, and limited support for the children and their parents during assessment.Children with ASD and their families in Hanoi experience various forms of stigma and discrimination. Children with ASD are often treated as one homogenous group with stereotypes as inauspicious, useless, stupid, and dangerous people. They experience limited health care, education and social integration. These result from misunderstandings of this condition, and the structural exclusion of people with disability. Cultural expectations of parenthood and childhood, and iii | P a g e

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Child and caregiver predictors of primary caregiver participation in families of school‐aged Autistic children

Davy,

Barbaro,

Unwin

et al. 2024

Autism Research

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Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7–12 years) were recruited from three unique cohorts of Autistic children in this cross‐sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social–emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co‐occurring conditions, who were older, and with better adaptive behaviors, social–emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social–emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes.

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Caring for an individual with autism disorder: A qualitative analysis

Abstract: The results of this study offer valuable insight into how helping professionals may attend to the biological, psychological, social, and spiritual dimensions of those caring for an individual with autism.

Cited by 72 publications

References 19 publications

Family-focused autism spectrum disorder research: A review of the utility of family systems approaches

Family-focused autism spectrum disorder research: A review of the utility of family systems approaches

Understanding autism spectrum disorder in Hanoi, Vietnam

Child and caregiver predictors of primary caregiver participation in families of school‐aged Autistic children

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