Risks and Protective Factors for Stress Self-Management in Parents of Children With Autism Spectrum Disorder: An Integrated Review of the Literature

Bonis, Susan A.; Sawin, Kathleen J.

doi:10.1016/j.pedn.2016.08.006

Cited by 45 publications

(28 citation statements)

References 107 publications

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“…The main findings of this study illustrated the difficult journey of parents who have children diagnosed with autism. This is consistent with the literature showing autism is a condition which has a major effect on the quality of life of parents (Frye, ; Hoefman et al, ; Russell & McCloskey, ), resulting in stress (Bonis, ; Bonis & Sawin, ; Frye, ; Whitmore, ). The parents in this study emphasized the challenging road they faced during the diagnostic process and living with autism afterwards, while attempting to keep their children safe.…”

Section: Discussionsupporting

confidence: 91%

Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns

Celia

Freysteinson

Fredland

et al. 2019

Journal of Advanced Nursing

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Aim:The first aim of this study was to explore the lived experiences of parents caring for their autistic children and their experiences with safety for these children.The second aim was to elicit safety recommendations from the parents of autistic children.Design: Hermeneutic phenomenology. Methods:Fifteen participants who self-reported they were parents of children with autism were recruited via snowball sampling. Data were collected from September 2017-December 2018 in audiotaped interviews using semi-structured questions.Interviews were held with four participants to determine if the findings represented their experiences and concerns accurately. Results:Two underlying structures which demonstrated the trajectory of the experience caring for autistic children were lost/finding our way and battle ready/battle weary. The phenomenological themes within battle weary included living with fear, living with uncertainty and living with disappointment. Resilience was a fourth phenomenological theme which supported the experience of being battle ready. The participants provided recommendations for other parents and healthcare professionals to help keep autistic children safe. Conclusion:This study illustrates the unique perspective of parents of autistic children concerning autism and safety.Impact: Most parents in this sample reported they faced substantial issues with safety for their child. Study results demonstrated that parents received little to no information about safety from healthcare professionals. Parents of autistic children and healthcare professionals need to be educated about safety issues to prevent injuries and death.

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Section: Discussionsupporting

confidence: 91%

Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns

Celia

Freysteinson

Fredland

et al. 2019

Journal of Advanced Nursing

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“…This important information offers an additional perspective on the impact of ASD on caregivers, with reports of both negative and positive caring aspects. Especially in parenting a child with an ASD, caregivers are continuously seeking to balance situation-specific risks and protective factors (Bonis et al 2016). Protective factors are most likely to be found in the familial and social context, for example, support in providing the necessary care.…”

Section: Discussionmentioning

confidence: 99%

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

Hoopen

Nijs

Duvekot

et al. 2019

J Autism Dev Disord

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This study investigated health-related QoL (HRQoL) and care-related quality of life (CarerQol) in clinically referred children with an autism spectrum disorder (ASD), and their primary and secondary caregivers. The EuroQol five-dimensional (EQ-5D) and the CarerQol questionnaires were used to respectively measure health-related QoL and care-related QoL. Primary caregivers reported pain/discomfort (42%) and anxiety/depression (40%). In caring, they mostly experienced problems in the relationship with the child (84%), and in combining care with daily activities (51%). Children with ASD had a relevantly lower QoL. Despite negative effects, almost all caregivers (96%) derived fulfillment from caring for their affected children. HRQoL and CarerQol reports of primary caregivers and children were correlated, both providing useful information to ASD measurement and treatment.Keywords Autism spectrum disorder (ASD) · Caregiver burden · CarerQol · Children · EuroQol five-dimensional (EQ-5D) questionnaire · Health-related quality of life * Leontine W. ten Hoopen Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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“…Sin embargo, en las últimas décadas y debido al aumento de interés sobre este trastorno, la salud mental de los padres de estos pacientes se ha vuelto otro foco de atención. En este sentido, y a partir de la información encontrada en la literatura, los grandes ejes de estudio internacional sobre salud mental en estos padres se han focalizado principalmente en medir estrés, ansiedad y depresión (Dababnah & Parish, 2015;Golfenshtein, Srulovici y Medoff-Cooper, 2015;Gomes et al, 2015;Lee, 2013;Ooi, Ong, Jacob & Khan, 2016;Whitmore, 2016;Bonis & Sawin, 2016) por lo que, en esta revisión, esos serán los conceptos a considerar. No obstante, además de lo anterior, cabe destacar que la OMS (s.f.)…”

Section: Santé Mentale Et Interventions Pour Les Parents D'enfants Avunclassified

Salud mental e intervenciones para padres de niños con trastorno del espectro autista: una revisión narrativa y la relevancia de esta temática en Chile

Suárez¹,

Soto²

2019

PSICO

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El Trastorno del Espectro Autista (TEA) afecta el neurodesarrollo durante la vida de la persona, afectando también la salud mental de los padres. Este artículo presenta una revisión narrativa de investigaciones sobre la salud mental y las intervenciones que la promueven en padres de niños entre cero y nueve años. Se revisaron bases de datos internacionales y nacionales entre los años 2011 y 2015, de las cuales se extrajo 18 artículos que cumplieron con los criterios establecidos. Los resultados muestran cómo las características específicas del TEA pueden afectar la salud mental de los padres crónicamente, revelando también la escasez de intervenciones psicosociales, que promuevan el bienestar emocional de estos padres y, por tanto, la necesidad de asumir un rol preventivo con esta población. Palabras clave: Trastorno del espectro autista, padres, salud mental, intervenciones psicosociales, Chile. Mental health and interventions for parents of children with autism spectrum disorder: A narrative review and the relevance of this topic in Chile Autism Spectrum Disorder (ASD) affects neurodevelopment during the life of the person, also affecting the mental health of the parents. This article presents a narrative review of mental health research and interventions that promote mental health in parents of children from birth to nine years old. International and national databases between 2011 and 2015 were reviewed, of which 18 articles met the established criteria. The results show how the specific characteristics of ASD can affect the mental health of parents chronically, revealing also the scarcity of psychosocial interventions that promote the emotional well-being of these parents and, therefore, the need to assume a preventive role with this population.

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Risks and Protective Factors for Stress Self-Management in Parents of Children With Autism Spectrum Disorder: An Integrated Review of the Literature

Cited by 45 publications

References 107 publications

Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns

Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

Salud mental e intervenciones para padres de niños con trastorno del espectro autista: una revisión narrativa y la relevancia de esta temática en Chile

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