The Impact of Autism Spectrum Disorders on the Family: A Qualitative Study of Mothers’ Perspectives

doi:10.1080/10522158.2012.675624

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The Impact of Autism Spectrum Disorders on the Family: A Qualitative Study of Mothers’ Perspectives

Journal Article•DOI•

The Impact of Autism Spectrum Disorders on the Family: A Qualitative Study of Mothers’ Perspectives

Christopher E. Nealy, Lindsey O'Hare, Joelle D. Powers¹, Danielle C. Swick¹•Institutions (1)

University of North Carolina at Chapel Hill¹

05 Jun 2012-Journal of Family Social Work (Taylor & Francis Group)-Vol. 15, Iss: 3, pp 187-201

TL;DR: In this paper, the impact of having a child with autism spectrum disorder on a family's daily functioning was discussed with eight mothers, and four primary themes emerged identifying primarily negative impacts.

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Abstract: An estimated 730,000 Americans younger than age 21 in the United States have an autism spectrum disorder (ASD), and current trends predict 36,500 new diagnoses each year. Due to this rapid increase in ASD diagnoses, it is critical to understand the impact having a child with ASD has on a family's daily functioning to better coordinate services and design effective interventions. Qualitative semistructured interviews with eight mothers were conducted, and four primary themes emerged identifying primarily negative impacts of having a child with ASD. Implications for practice and future research are addressed to inform the development of best practices for families.

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Journal Article•DOI•

Stress and Parents of Children with Autism: A Review of Literature

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Susan A. Bonis¹•Institutions (1)

University of Wisconsin–Milwaukee¹

30 Mar 2016-Issues in Mental Health Nursing

TL;DR: Factors that impact parents' experiences of caring for a child with autism spectrum disorder (ASD) are synthesized to identify factors that impact parental stress and parental decision-making to use autism services or not.

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Abstract: The purpose of this review is twofold. The first is to synthesize factors that impact parents' experiences of caring for a child with autism spectrum disorder (ASD); the second is to identify factors that impact parental stress and parental decision-making to use autism services or not. Parents of children with ASD score higher on levels of stress than other groups of parents. The daily challenges of caring for the child are endless and effect all aspects of the child's care as well as the parent's mental health and ability to manage the needs of the child and family. Understanding more about the challenges parents face will provide direction for research, intervention development, and practice. Accordingly, a search was conducted using CINAHL and Medline. Inclusion criteria included articles available in full text, published in English, and focused on children with ASD distinct from other diagnoses, as well as parental experiences of caring for a child with ASD. Articles (N = 132) that met the inclusion criteria were summarized. Challenging aspects of the child's diagnosis and care are discussed, as well as the factors that impact parental stress and decision-making to use autism services. Recommendations for research and practice include interventional development related to early diagnosis, disparity, access to care, parental decision-making to use autism services, and parental stress management.

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190 citations

Cites background from "The Impact of Autism Spectrum Disor..."

...Mothers typically leave the work force in order to manage the care of the child, health care appointments, and school-related concerns (Altiere & von Kluge, 2009a; Gau et al., 2012; Jones et al., 2013; Mandell et al., 2010; Nealy et al., 2012; Silva & Schalock, 2012)....
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...Health care providers frequently attribute the child’s behavior to poor parenting and disregard parental concerns (Altiere & von Kluge, 2009b; Nealy et al., 2012; Silva & Schalock, 2012)....
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...Daycare for their other children, differences in decision-making, and fear of stigmatization also could be contributing factors (Altiere & von Kluge, 2009a; Hill-Chapman et al., 2013; Nealy et al., 2012)....
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...Judgment and criticism from others related to these issues are major sources of stress; however, only one study in this review talked about the parents’ experiences and ways of responding (Nealy et al., 2012)....
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...Associated blame and disappointment at not being able to “fix” the problem leads to feelings of failure as a parent (Dunn et al., 2001; Nealy et al., 2012; Neely-Barnes, Hall, Roberts, & Graff, 2011)....
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Journal Article•DOI•

Family functioning and behaviour problems in children with Autism Spectrum Disorders: The mediating role of parent mental health.

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Rachel Jellett¹, Catherine E. Wood¹, Rebecca Giallo, Monique Seymour¹•Institutions (1)

Swinburne University of Technology¹

01 Mar 2015-Clinical Psychologist

TL;DR: In this paper, the authors explored the relationship between child behaviour problems and family functioning in families where there was a preschooler with ASD and found that the relationship was mediated by depressive symptoms, but not stress and fatigue.

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Abstract: Background Parents of young children with Autism Spectrum Disorders (ASDs) are often relied on to help implement therapy with their child, which occurs within a family context. Therefore, it is important to understand and support families where there is a child with an ASD. Although individual parent factors have received substantial research attention, fewer studies have investigated family functioning. This study explored the relationship between child behaviour problems and family functioning in families where there was a preschooler with an ASD. Parent mental health difficulties, including stress, fatigue, and depressive symptoms, were investigated as mediators in this relationship. Method Participants included 97 parents with a preschooler diagnosed with an ASD. Parents completed an online questionnaire reporting on child behaviour problems, their own symptoms of stress, depression and fatigue, and family functioning. Results Path analysis showed that the relationship between child behaviour problems and family functioning was mediated by depressive symptoms, but not stress and fatigue. Conclusions These results highlighted one way that ASDs can impact on the family system, suggesting that when parents are overburdened by behaviour problems, there are implications for the family. The importance of providing clinical interventions and support to strengthen parent mental health and family functioning is discussed.

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67 citations

Journal Article•DOI•

Sibling Relationships of Children with Autism Spectrum Disorder in the Context of Everyday Life and a Strength-Based Program

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Marissa L. Diener¹, Laura Linnell Anderson¹, Cheryl Wright¹, M. Louise Dunn²•Institutions (2)

University of Utah¹, Brenau University²

01 Apr 2015-Journal of Child and Family Studies

TL;DR: The authors examined mothers' and sisters' perceptions of sibling relationships in families with a brother with autism spectrum disorder (ASD) in the context of a strengths-based, family-focused 3D technology program designed for youth on the spectrum.

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Abstract: This research examined mothers’ and sisters’ perceptions of sibling relationships in families with a brother with autism spectrum disorder (ASD) in the context of a strengths-based, family-focused 3D technology program designed for youth on the spectrum. Seven sisters and six mothers participated in semi-structured interviews, which were coded for emergent themes. Both similarities and differences between sisters’ and mothers’ perceptions of the sibling relationship emerged from the narratives. Sisters and mothers framed the sibling relationship differently within the context of everyday life activities compared to the context of their brother’s involvement in the technology program that highlighted his skills and abilities. Within the context of everyday life, sisters described the dual nature of their relationships, involving both positive and negative qualities, whereas mothers focused on the challenges in the sibling relationship. Both mothers and sisters identified the “sister” role in the sibling relationship as that of a nurturer. Within the context of the technology program, mothers and sisters both perceived the boys’ roles as shifting positively relative to the context of everyday life. Sisters spoke of a sense of pride in their brother’s accomplishments in 3D design, whereas mothers spoke about their children being more engaged with one another because of their shared interests in the program. We discuss implications for interventions with families with a child with ASD.

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57 citations

Cites background from "The Impact of Autism Spectrum Disor..."

...For example, some mothers perceived that it was difficult to provide equal time and attention when they had one child with ASD and other typically developing children (Nealy et al. 2012)....
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...Sibling relationships that involve a child with ASD might be impaired due to the characteristics of autism (Ferraioli and Harris 2010; Kaminsky and Dewey 2001), as well as the changes in family dynamics (Nealy et al. 2012)....
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Journal Article•DOI•

Families Living With Autism Spectrum Disorder Roles and Responsibilities of Adolescent Sisters

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Elizabeth Kate Cridland¹, Sandra C Jones², Gerard J. Stoyles¹, A. Peter Caputi¹, Christopher A. Magee¹ - Show less +1 more•Institutions (2)

University of Wollongong¹, Australian Catholic University²

01 Sep 2016-Focus on Autism and Other Developmental Disabilities

TL;DR: There is currently a limited understanding of adolescent sibling relationships where Autism Spectrum Disorder (ASD) is present as discussed by the authors and this research gap remains despite preliminary findings suggesting that there is a strong connection between ASD and sibling relationships.

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Abstract: There is currently a limited understanding of adolescent sibling relationships where Autism Spectrum Disorder (ASD) is present. This research gap remains despite preliminary findings suggesting tha...

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41 citations

Journal Article•DOI•

Fathers' Experience With Autism Spectrum Disorder: Nursing Implications

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Linda Frye¹•Institutions (1)

University of Texas at Arlington¹

01 Sep 2016-Journal of Pediatric Health Care

TL;DR: The similarity of the findings in the small sample size of fathers and those in studies with larger sample sizes of mothers supports development of clinical interventions that will benefit both mothers and fathers of children with ASD.

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40 citations

Cites background from "The Impact of Autism Spectrum Disor..."

...In previous studies, mothers of children with ASD expressed grief and loss in terms of isolation, depression, anxiety, stress, burden, guilt, and decreased well-being (Barker et al., 2011; Beer et al., 2013; Estes et al., 2009; Hartley et al., 2010; Karst & Vaughn Van Hecke, 2012; Lickenbrock et al., 2011; Meirsschaut et al., 2010; Nealy et al., 2012; Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011)....
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...…stress, burden, guilt, and decreased well-being (Barker et al., 2011; Beer et al., 2013; Estes et al., 2009; Hartley et al., 2010; Karst & Vaughn Van Hecke, 2012; Lickenbrock et al., 2011; Meirsschaut et al., 2010; Nealy et al., 2012; Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011)....
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References

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Reference Entry•DOI•

Diagnostic and Statistical Manual of Mental Disorders

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Janet B. W. Williams

11 Jun 2013

113,134 citations

Qualitative methods in social work research: Challenges and rewards (Translated into Korean)

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Deborah Padgett

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1,078 citations

Book•

Qualitative Methods in Social Work Research: Challenges and Rewards

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Deborah K. Padgett¹•Institutions (1)

University of York¹

14 Jan 1998

TL;DR: In this paper, the authors discuss the importance and relevance of qualitative research in the field of social work education and discuss the synergy of combining qualitative and quantitative methods in combining both qualitative and quantitative methods.

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Abstract: Introduction The Researcher as Instrument Getting Started Choosing a Topic and Designing the Study Ethical Issues in Qualitative Research Entering the Field and Sampling Strategies Data Collection Data Management and Analysis Rigor and Relevance in Qualitative Research Telling the Story Writing Up the Qualitative Study Multimethod Research The Synergy of Combining Qualitative and Quantitative Methods Epilogue Qualitative Methods in Social Work Education: Toward Developing an Infrastructure

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970 citations

"The Impact of Autism Spectrum Disor..." refers methods in this paper

...Coding was done on a line-by-line basis using an inductive approach (Padgett, 1998)....
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Book•

Essential Research Methods for Social Work

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Allen Rubin, Earl Babbie

01 Jan 1989

TL;DR: This reader-friendly and clear social work book provides you with the tools you need to understand essential research methods content and shows you how to apply research to practice.

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Abstract: Part I: AN INTRODUCTION TO SCIENTIFIC INQUIRY IN SOCIAL WORK. 1. Why Study Research? 2. Evidence-Based Practice. 3. Quantitative, Qualitative and Mixed Methods. 4. Factors Influencing the Research Process. Part II: PROBLEM FORMULATION AND MEASUREMENT. 5. Reviewing Literature and Developing Research Questions. 6. Conceptualization in Quantitative and Qualitative Inquiry. 7. Measurement in Quantitative and Qualitative Inquiry. 8. Quantitative and Qualitative Measurement Instruments. Part III: SAMPLING AND SURVEYS. 9. Surveys. 10. Sampling: Quantitative and Qualitative Approaches. Part IV: DESIGNS FOR EVALUATING PROGRAMS AND PRACTICE. 11. Experiments and Quasi-Experiments. 12. Single-case Evaluation Designs. 13. Program Evaluation. Part V: ADDITIONAL QUALITATIVE AND QUANTITATIVE RESEARCH METHODS. 14. Additional Methods in Qualitative Inquiry. 15. Analyzing Available Records: Quantitative and Qualitative Methods. Part VI: ETHICAL AND CULTURAL ISSUES IN SOCIAL WORK RESEARCH. 16. Ethical Issues in Social Work Research. 17. Culturally Competent Research. Part VII: DATA ANALYSIS. 18. Quantitative Data Analysis. 19. Qualitative Data Analysis. Appendix A. Writing Research Proposals. Appendix B. Writing Social Work Research Reports. Appendix C. Table of Random Numbers.

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900 citations

"The Impact of Autism Spectrum Disor..." refers methods in this paper

...More specifically, the constant comparative method was used, which begins with observations rather than hypotheses and attempts to uncover themes and develop theories from the ground up (Rubin & Babbie, 2010)....
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Journal Article•DOI•

The relative risk and timing of divorce in families of children with an autism spectrum disorder.

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Sigan L. Hartley¹, Erin T. Barker¹, Marsha Mailick Seltzer¹, Frank J. Floyd², Jan S. Greenberg¹, Gael I. Orsmond³, Daniel M. Bolt¹ - Show less +3 more•Institutions (3)

University of Wisconsin-Madison¹, Georgia State University², Boston University³

01 Aug 2010-Journal of Family Psychology

TL;DR: Younger maternal age when the child with ASD was born and having the child born later in the birth order were positively predictive of divorce for parents of children with an ASD, which has implications for interventions focused on ameliorating ongoing and long-term marital strains.

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Abstract: We compared the occurrence and timing of divorce in 391 parents of children with an autism spectrum disorder (ASD) and a matched representative sample of parents of children without disabilities using a survival analysis. Parents of children with an ASD had a higher rate of divorce than the comparison group (23.5% vs. 13.8%). The rate of divorce remained high throughout the son’s or daughter’s childhood, adolescence, and early adulthood for parents of children with an ASD, whereas it decreased following the son’s or daughter’s childhood (after about age 8 years) in the comparison group. Younger maternal age when the child with ASD was born and having the child born later in the birth order were positively predictive of divorce for parents of children with an ASD. Findings have implications for interventions focused on ameliorating ongoing and long-term marital strains for parents of children with an ASD.

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410 citations

"The Impact of Autism Spectrum Disor..." refers background in this paper

...In fact, research on parents of children with ASD has found the divorce rate to be nearly twice that of parents who do not have a child with a developmental disability (Hartley et al., 2010)....
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