Severe Childhood Autism: The Family Lived Experience

Gorlin, Jocelyn; McAlpine, Cynthia Peden; Garwick, Ann E; Wieling, Elizabeth

doi:10.1016/j.pedn.2016.09.002

Cited by 48 publications

(38 citation statements)

References 26 publications

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“…Chronic illness creates a burden for both the person with the illness and those caring for him or her (Murphy, Christian, Caplin, & Young, 2007;Murphy, Kobayashi, Golden, & Nageswaran, 2012); similarly, when a child has a chronic health condition, their families must adapt their lives to meet the needs of the affected child (Bessette Gorlin, McAlpine, Garwick, & Wieling, 2016;Carnevale et al, 2008;Skinner & Slifkin, 2007). While the experience of families with a child with a chronic condition has been explored previously, little is currently known about this experience for rural mothers.…”

Section: Introductionmentioning

confidence: 99%

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

Bristow

Jackson

Shields

et al. 2018

Journal of Clinical Nursing

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There is a need for health professionals to understand the challenges and barriers rural mothers face in accessing services. Nurses can assist rural mothers to navigate and access the appropriate services in order to reduce health inequity, increase accessibility to services and reduce rural disadvantage for their child. Nurses and health professionals are in an ideal position to develop future models of care that optimise health outcomes and enable equity and access to services for rural children with chronic conditions similar to those experienced by their urban counterparts.

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Section: Introductionmentioning

confidence: 99%

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

Bristow

Jackson

Shields

et al. 2018

Journal of Clinical Nursing

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“…Previous research found that the presence of groups for parents who have autistic children provides the parents with an opportunity to share knowledge related to autistic childcare (Bray, Carter, Sanders, Blake, & Keegan, 2017). Such social support might become a significant factor in developing mothers' psychological well-being (Bessette Gorlin, McAlpine, Garwick, & Wieling, 2016 There are several limitations to this research. The first is unable to classify the type of autistic disorder based on the level of conditions that may affect the mothers' efforts in childcare process.…”

Section: Discussionmentioning

confidence: 92%

Psychological well-being among mothers of children with autism spectrum disorder: The role of family function

Desiningrum

Suminar

2019

HUMANITAS

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The mother of children with autism is the most vulnerable person to have stress and depression. Therefore they need positive psychological well-being to optimize the caring of children. Family is the primary environment in supporting the mother's mental health. This study aimed to find out how family functions correlate with psychological well-being among the mother of a child with autism. A quantitative approach was applied, involving 142 mothers who had autistic children selected through purposive sampling techniques. The data was collected using Family Functioning and Psychological Well-being instruments. The data was then analyzed with regression analysis. The results show that family functioning and psychological well-being are correlated significantly. The more effective family function based on the perception of the mother, the higher the psychological well-being of the mother, and vice versa. Problem-solving, communication, affective response, and role are dimensions that influence psychological well-being, while behavior control and affection dimensions are not significant. The results of the study can provide input suggestions for the government, such as through family empowerment regarding the importance of supporting and optimizing the role of family members to stimulate the psychological well-being of mothers of children with an autism spectrum disorder. Keywords autism child family functioning mother psychological well-being

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“…Being bullied is not uncommon for children with ASD, and has been shown to increase anxiety (Cappadocia et al, 2012;Hoover, 2015). Symptoms of ASD, such as difficulties with communication and social interaction, can exacerbate bullying (Bessette Gorlin, McAlpine, Garwick, & Wieling, 2016;Hebron, Humphrey, & Oldfield, 2015). Bullying is difficult to resolve; however, children with ASD are more likely to be victims of bullying than typically-developing children or children with other disabilities (Hoover, 2015).…”

Section: Understanding Others' Emotions (Empathy)mentioning

confidence: 99%

Stressors experienced by children with autism spectrum disorder in Taiwan: Perspectives of children and their parents

Chin

Chao

et al. 2018

Nursing & Health Sciences

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Autism spectrum disorder has only recently been recognized as a developmental disability in Taiwan. We conducted an exploratory qualitative descriptive study with children (n = 14, mean age = 13.57 years) and their parents to understand stressors experienced by children with autism spectrum disorder in Taiwan. An analysis of face‐to‐face interviews revealed that children with autism spectrum disorder experienced stressors of daily living, which included environmental stimuli, academic and behavioral expectations, deviations in routine, behavioral expectations, and emotional control, and stressors of socializing, which included bullying, communication, personal interactions, conflict resolution, and difficulty understanding others' emotions. Stressors resulted from the core symptoms and characteristic behaviors of autism spectrum disorders, and also Taiwanese cultural expectations. Our findings could help develop individualized educational plans and culturally‐sensitive behavioral interventions. Facilitation of these interventions could be used by nurses and health‐care professionals to help facilitate problem solving and communication skills, which could reduce the stress for children with autism spectrum disorder in Taiwan.

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Severe Childhood Autism: The Family Lived Experience

Cited by 48 publications

References 26 publications

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

Psychological well-being among mothers of children with autism spectrum disorder: The role of family function

Stressors experienced by children with autism spectrum disorder in Taiwan: Perspectives of children and their parents

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