A qualitative study examining coping and support systems used by parents of children with autism PDF Download

Author: Matilda Andersson
Publisher:
ISBN:
Category :
Languages : es
Pages :

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Author: Imogen Waterson
Publisher:
ISBN:
Category :
Languages : en
Pages :

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How do families with more than one child with autism manage to cope and do they risk family disintegration or demonstrate resilience? Although there is extensive literature on coping with children with disabilities, no previous study has examined the effect of living with two or more children with autism. Eleven families including parents, siblings, and verbal children with autism, (45 individuals) were interviewed to ascertain their coping strategies. Using Grounded Theory, the semi-structured interview typescripts were analysed, and a theory emerged that all families cope, but they go through different periods of perilous coping and buoyant coping. The various factors which lead to each type of coping are demonstrated, and discussed. Practical suggestions to improve coping are given by the families. Their message to the non autistic world was that they do not want to be pitied. The results showed a remarkable degree of resilience in all the families. Family and extended family were the most significant source of support. Perilous coping was associated with a number of intervening factors. The families showed real warmth and love towards the affected children and in spite of concerns about the future, the non affected siblings were confident they would look after their disabled siblings when the parents were no longer able to do so. Children with autism had a fascinating range of perceptions about autism.

Author: Vanessa Fong
Publisher:
ISBN:
Category :
Languages : en
Pages : 0

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Few studies to date have explored the experiences of racialized and ethno-cultural families raising autistic children in multicultural contexts such as Canada. Research conducted in the US and Canada have identified strengths and difficulties related to family functioning and coping strategies used by immigrant parents. Additionally, this research has also identified barriers and facilitators to accessing diagnostic and other autism services across the lifespan. However, the majority of these studies have broadly categorized immigrant populations, potentially masking important differences within pan-ethnic populations. In Canada, and British Columbia (BC) specifically, one of the largest and fastest growing visible minority groups are Koreans (Statistics Canada, 2017). Yet despite this, no studies to date have examined the experiences and perceptions of Korean immigrant parents of autistic children living in BC. This gap in the research has become increasingly urgent given the growing prevalence rates of autism and the highly complex service system in Canada, which varies considerably across provinces. This research utilized a community engaged approach and qualitative methodology to explore quality of life, service navigation, and coping strategies among 25 Korean parents of autistic children (5-33 years) living in BC. This study addressed three aims. First, parents' conceptualizations and descriptions of family quality of life (FQOL) were explored. Analyses revealed three themes that were central to their definitions of FQOL: family cohesiveness, value orientation, and acceptance from society. Second, parents' perceptions of barriers and facilitators to accessing autism services were examined. Barriers at the system (e.g., ineffective school policies), provider (e.g., negative attitudes, lack of service navigation support), and family level (e.g., stigma) were identified. Facilitators included family-centered care (system level), culturally competent and bilingual professionals (provider level), and connections to cultural community organizations (family level). Third, a subset of caregivers (n=12) representing both high and low levels of FQOL shared their coping strategies on how they came to terms with their child's diagnosis and manage stress. The results are discussed linking previous research to current findings and considered in terms of practice and policy implications with future areas of research identified.

Author: Mohammad-Reza Mohammadi
Publisher: BoD – Books on Demand
ISBN: 9533074949
Category : Medical
Languages : en
Pages : 491

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The aim of the book is to serve for clinical, practical, basic and scholarly practices. In twentyfive chapters it covers the most important topics related to Autism Spectrum Disorders in the efficient way and aims to be useful for health professionals in training or clinicians seeking an update. Different people with autism can have very different symptoms. Autism is considered to be a "spectrum" disorder, a group of disorders with similar features. Some people may experience merely mild disturbances, while the others have very serious symptoms. This book is aimed to be used as a textbook for child and adolescent psychiatry fellowship training and will serve as a reference for practicing psychologists, child and adolescent psychiatrists, general psychiatrists, pediatricians, child neurologists, nurses, social workers and family physicians. A free access to the full-text electronic version of the book via Intech reading platform at http://www.intechweb.org is a great bonus.

Author: Vinood B. Patel
Publisher: Springer
ISBN: 9781461447870
Category : Psychology
Languages : en
Pages : 0

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Autism is a complex multifaceted disorder affecting neurodevelopment during the early years of life and, for many, throughout the life span. Inherent features include difficulties or deficits in communication, social interaction, cognition, and interpersonal behavioral coordination, to name just a few. Autism profoundly impacts the affected individual, the family, and, in many cases, the localized communities. The increased prevalence of childhood autism has resulted in rapid developments in a wide range of disciplines in recent years. Nevertheless, despite intensive research, the cause(s) remain unresolved and no single treatment strategy is employed. To address these issues, Comprehensive Guide to Autism is an all-embracing reference that offers analyses and discussions of contemporary issues in the field of autism. The work brings together scientific material from leading experts in the field relating to a wide range of important current topics, such as the early identification and treatment of children with autism, pertinent social and behavioral studies, recent developments in genetics and immunology, the influence of diet, models of autism, and future treatment prospects. Comprehensive Guide to Autism contains essential readings for behavioral science researchers, psychologists, physicians, social workers, parents, and caregivers.

Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
ISBN: 0309388570
Category : Social Science
Languages : en
Pages : 525

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Decades of research have demonstrated that the parent-child dyad and the environment of the familyâ€"which includes all primary caregiversâ€"are at the foundation of children's well- being and healthy development. From birth, children are learning and rely on parents and the other caregivers in their lives to protect and care for them. The impact of parents may never be greater than during the earliest years of life, when a child's brain is rapidly developing and when nearly all of her or his experiences are created and shaped by parents and the family environment. Parents help children build and refine their knowledge and skills, charting a trajectory for their health and well-being during childhood and beyond. The experience of parenting also impacts parents themselves. For instance, parenting can enrich and give focus to parents' lives; generate stress or calm; and create any number of emotions, including feelings of happiness, sadness, fulfillment, and anger. Parenting of young children today takes place in the context of significant ongoing developments. These include: a rapidly growing body of science on early childhood, increases in funding for programs and services for families, changing demographics of the U.S. population, and greater diversity of family structure. Additionally, parenting is increasingly being shaped by technology and increased access to information about parenting. Parenting Matters identifies parenting knowledge, attitudes, and practices associated with positive developmental outcomes in children ages 0-8; universal/preventive and targeted strategies used in a variety of settings that have been effective with parents of young children and that support the identified knowledge, attitudes, and practices; and barriers to and facilitators for parents' use of practices that lead to healthy child outcomes as well as their participation in effective programs and services. This report makes recommendations directed at an array of stakeholders, for promoting the wide-scale adoption of effective programs and services for parents and on areas that warrant further research to inform policy and practice. It is meant to serve as a roadmap for the future of parenting policy, research, and practice in the United States.

Author: M. Grace Baron
Publisher: Oxford University Press, USA
ISBN: 9780195182262
Category : Medical
Languages : en
Pages : 484

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Author: Naicari Mata
Publisher:
ISBN:
Category :
Languages : en
Pages : 38

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Purpose: To explore the utilization of parent support groups for parents with children diagnosed with autism or other developmental disabilities. The research was a qualitative study exploring why individuals join parent support groups and their expectations of the group. Methods: The researchers utilized convenient sampling, as all participants were recruited from the Family Focus Resource Center offices located in Northridge and Santa Clarita. In-depth face-to-face interviews were conducted with 10 participants that attended a parent support group. The interview consisted of a total of 10 questions that pertained to the following areas: (1) motives and expectations and (2) demographics. Results: The results were consistent with previous research indicating that parents of children diagnosed with autism or other developmental disabilities join support groups for psychological support, tools to connect with their child, and educational support. There were six primary themes identified for all the parents in the study. Discussion: The findings in this study were congruent with the literature on the benefits of parents receiving social support and education, as well as positive changes within relationships in the family system.

Author: Rebecca Shine
Publisher:
ISBN:
Category :
Languages : en
Pages : 0

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Parents of children with Autism Spectrum Disorder (ASD) are at risk for experiencing elevated levels of distress; coping has been shown to moderate parents experience of distress, but popular instruments of both stress and coping have not been well-validated in the ASD population. Previous research on a commonly-used measure of parental distress, the Parenting Stress Index - Short Form (PSI-SF), has shown that its three subscale model does not adequately explain data from parents of children with ASD. The goal of the current study was to further examine the psychometric properties of the PSI-SF and to examine the psychometric properties of an instrument that measures coping - namely, the Family Crisis Oriented Personal Evaluation Scales (F-COPES) - using a large, community-based sample of parents of 1,790 children with ASD obtained from archived screening assessments conducted over a decade and a half (2000 - 2016). Further, the large sample provided an opportunity to examine separately the responses of fathers, which has been a gap in the literature. First, the factor structure of each questionnaire was examined in mothers and fathers separately using confirmatory factor analysis (CFA) to evaluate the fit of the model of the questionnaires as published. As expected from previous research with smaller samples, the fit indices differed from the original validation structures published in the test manuals with identified subscales shown to be lacking psychometric verification. Exploratory factor analysis (EFA) was then completed on half of each sample (mothers and fathers separately) to examine other models for improved fit. After new factor structures were developed, these models were examined using CFA on the other half of the sample for cross-validation. Based on these analyses, a 5-factor model was developed for the PSI-SF (General Parental Distress, Behavioural Regulation, Reciprocity, Child Limits, Perceived Disagreeable Behaviour) and a 7-factor model was developed for the F-COPES (Social Support from Friends and Family, Self-Efficacy, Religious Participation/Coping, Passive/Avoidant Coping, Formal Supports, Supports from Neighbours, Acceptance), with the factors defining the same subscale pattern for mothers and fathers. Finally, child and demographic factors (age, sex, adaptive behaviour, autism symptom severity, and socioeconomic status) were evaluated as potential predictors of the newly developed PSI-SF and F-COPES subscale scores in mothers and fathers. The findings of this large clinical sample research have important applications for instrument subscale revisions to improve measurement and have implications for theoretical models of parental stress and coping. Future research might explore some of the preliminary findings of differences between mothers and fathers in predictors arising from newly proposed subscales of family distress and coping.

Author: Roxana Cruz
Publisher:
ISBN: 9781124251691
Category : Hispanic American women
Languages : en
Pages : 152

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Abstract: The purpose of this qualitative study was to explore the challenges Latina mothers raising children with autism experience and the coping strategies used to overcome them. This study employed face-to-face interviews with 20 self-identified Latina mothers raising a child with autism. Questions from a researcher-developed interview guide elicited responses about challenges and coping strategies of Latina mothers raising a child with autism. Results indicated that the majority of respondents had low to no knowledge of autism prior to and after their child's diagnosis of autism. Respondents indicated challenges to be: cultural challenges, familial impact, financial impact, fear for their child's future, disclosure of their child's disability, and service seeking. Respondents indicated that coping strategies included: utilizing their support system, intellectualization, and self-care. Recommendations to other Latina mothers raising a child with autism included allowing themselves to grieve for their child, to learn the system and services available, "ignore ignorance," and to change their view of the diagnosis of autism from punishment to a blessing.