The Lived Experiences of Low Income Parents of Children with Autism PDF
Preview The Lived Experiences of Low Income Parents of Children with Autism
Walden University ScholarWorks Walden Dissertations and Doctoral Studies Walden Dissertations and Doctoral Studies Collection 2017 Te Lived Experiences of Low Income Parents of Children with Autism Renee L. Sullivan Walden University Follow this and additional works at: htps://scholarworks.waldenu.edu/dissertations Part of the Clinical Psychology Commons, and the Education Commons Tis Dissertation is brought to you for free and open access by the Walden Dissertations and Doctoral Studies Collection at ScholarWorks. It has been accepted for inclusion in Walden Dissertations and Doctoral Studies by an authorized administrator of ScholarWorks. For more information, please contact Walden University College of Social and Behavioral Sciences This is to certify that the doctoral dissertation by Renee Sullivan has been found to be complete and satisfactory in all respects, and that any and all revisions required by the review committee have been made. Review Committee Dr. Leann Stadtlander, Committee Chairperson, Psychology Faculty Dr. Patricia Heisser-Metoyer, Committee Member, Psychology Faculty Dr. Michael Johnson, University Reviewer, Psychology Faculty Chief Academic Officer Eric Riedel, Ph.D. Walden University 2017 Abstract Lived Experiences of Low-Income Parents Raising Children With Autism by Renee Sullivan MA, Mercer University School of Medicine, 2002 BA, Mercer University, 1999 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Psychology Walden University July 2017 Abstract Previous studies indicated that parents raising children with autism (CWA) experience higher rates of stress; however, no qualitative studies have addressed low-income parents’ lived experiences of raising CWA. The purpose of this hermeneutic phenomenological study was to understand the challenges that low-income parents of CWA face daily within the framework of family systems theory and biopsychosocial theory. Research questions focused on the impact of income and the core symptoms of autism (social deficits, communication deficits, and repetitive behaviors) on marital and interpersonal relationships. Semistructured interviews with 13 parents were conducted, and transcripts were analyzed for themes using a 4-step process. Results indicated some negative impacts on parents’ marital, social, and professional relationships. Themes included higher levels of stress and depression, decreased social interaction, less personal and professional satisfaction, and lower levels of marital satisfaction. Findings may be used to increase empathy and understanding of parents’ challenges and improve access to resources and services required for CWA and their parents to enhance their quality of life. Lived Experiences of Low-Income Parents Raising Children With Autism by Renee Sullivan MA, Mercer University School of Medicine, 2002 BA, Mercer University, 1999 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Psychology Walden University July, 2017 Dedication This dissertation is dedicated to my family for their patience while I completed my academic journey. Without your support and encouragement, I would not have made it to the end so “Thank you all!” Family members include but are not limited to my husband, Michael Sullivan, my daughters, sons-in-law, and granddaughter, Steven, Amber, Zaylee Mason, and Daniel, Ashley and Caroline Garrett; my mother, Mary Ann Langford; my mother-in-law, Diana Glover; my brother, Chuck Langford, Jr.; my aunts, uncles, cousins, nieces, nephews, and numerous friends and coworkers who have supported me through the years in this quest. A special thanks to my esteemed colleagues, Dr. Juanita Sibayan, Dr. Susan Ruiz, Dr. Michelle Saari, and Dr. Heather Chapman for your support throughout our educational journey together. Although they were not able to see my goal come to fruition, I also thank Charles Langford, Sr. (Daddy), William Carlton, and Ella Mae Langford (my paternal grandparents), and Thomas and Belle Paul (my maternal grandparents) for their love and support. Most of all, I thank God for giving me the strength, motivation, and determination to achieve this goal. Acknowledgments I would especially like to acknowledge my committee, Dr. Lee Stadtlander, Dr. Elizabeth Matthews, and Dr. Michael Johnson, for the countless hours you put into reading my work and providing feedback to help me through this process. Thank you all! Table of Contents Chapter 1: Introduction to the Study .................................................................................1 Background .................................................................................................................... Problem Statement .....................................................................................................13 Purpose of Study ........................................................................................................13 Research Questions ....................................................................................................14 Theortical Framework ................................................................................................15 Nature of the Study ....................................................................................................18 Definition of Terms....................................................................................................19 Assumptions ...............................................................................................................21 Scope and Delimitations ............................................................................................21 Limitations .................................................................................................................22 Significance for Social Change ..................................................................................22 Summary ....................................................................................................................24 Chapter 2: Literature Review ..........................................................................................25 Literature Search Strategy..........................................................................................28 History and Etiology of Autism Spectrum Disorders ................................................28 Autism Etiology .........................................................................................................33 Parental Concerns and Expectations of Child Development .....................................36 Parental Concerns ......................................................................................................39 Parental Frustrations with the Diagnostic Process .....................................................41 Benefits of Unity among Physicians and Psychologists ............................................52 i Stress and its Relationship to Parental Resource Needs .............................................56 Differences in Parental Stress and Age of ASD Child ..............................................59 Coping Differences for Fathers and Mothers of Children with Autism ....................60 Description of Communication Problems of Autism.................................................61 Social Skills Deficits ..................................................................................................63 Stress and Parental Health .........................................................................................64 Impact of Stress on Parental Social Life ....................................................................65 Impact of Stress on Religious Practices, Employment, & Household Duties ...........66 Marriage & Divorce Statistics for American Couples ...............................................67 Effort to Keep Families Together ..............................................................................70 Biopsychosocial Theoretical Model ..........................................................................72 Family Systems Theory .............................................................................................74 Summary ....................................................................................................................78 Chapter 3: Research Method and Introduction ...............................................................81 Research Design and Rationale .................................................................................81 Hermeneutic Phenomonology ....................................................................................82 Role of Researcher .....................................................................................................85 Methodology ..............................................................................................................86 Participation Selection Logic .....................................................................................86 Instrumentation ..........................................................................................................87 Pilot Study ...................................................................................................................89 Procedures Sampling Strategy ...................................................................................89 ii Data Collection ..........................................................................................................89 Debriefing Participants ...............................................................................................92 Data Analysis .............................................................................................................92 Issues of Trustworthiness ............................................................................................96 Transferability ............................................................................................95 Dependability .............................................................................................95 Confirmability ............................................................................................95 Inter Coder Reliability ...............................................................................96 Dissemination of the Findings ...................................................................96 Ethical Considerations ...............................................................................................97 Confidentiality ...........................................................................................97 Summary ....................................................................................................................98 Chapter 4: Results .........................................................................................................102 Introduction ..............................................................................................................102 Pilot Study ................................................................................................................102 Setting……………… ..............................................................................................103 Demographics ..........................................................................................................104 Data Analysis ............................................................................................................105 Horizontalization......................................................................................................107 Textural Description ................................................................................................107 Imaginative Variation ..............................................................................................108 Discrepant Cases ......................................................................................................108 iii
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