Literaturnachweis - Detailanzeige
| Autor/in | Walker-Pethick, Amanda Cathryn |
|---|---|
| Titel | A Phenomenological Study on the Lived Experiences of Family Members Raising a Child with Severe Autism: Informing Educators, Medical Providers, and First Responders |
| Quelle | (2023), (140 Seiten)
PDF als Volltext Ph.D. Dissertation, Northcentral University |
| Sprache | englisch |
| Dokumenttyp | gedruckt; online; Monographie |
| ISBN | 979-8-3794-8888-8 |
| Schlagwörter | Hochschulschrift; Dissertation; Autism Spectrum Disorders; Severe Disabilities; Social Bias; Family Needs; Family Environment; Knowledge Level; Allied Health Personnel; School Personnel; Barriers; Educational Needs; Services |
| Abstract | Autism spectrum disorder is the most common neurodevelopmental disability in the United States, with approximately one-third of children affected severely. Severe autism (autism level three) results in significant challenges in the home, school, and community. The problem addressed is that families with a child with severe autism are often pushed to the fringes of society, excluded, or misunderstood by their communities and service providers, and left experiencing isolation, aggression, difficulty maintaining stable employment, and emotional distress. This phenomenological qualitative study aimed to facilitate service providers' understanding of the lived experiences of families living with a child with severe autism. This study used a Family Systems lens guided by an Interpretive Phenomenological Analysis design. Through semi-structured interviews, 13 family members from nine families described their lives with severe autism to answer the study questions, "What is the lived experience of the family living with a child with severe autism?" and "What is the lived experience of each family member living with a child with severe autism?" Themes emerged, including service providers' lack of ASD knowledge, need to listen and understand, distrust in the education system, ASD-related aggression, limited independence, the impact on familial mental health, and living in survival mode. Families experienced impacts related to intense supervision needs, unmet medical and educational needs, aggression, self-injurious behavior, impaired communication skills, extreme hygiene needs, social skills deficits, heightened sensory needs, and an acute awareness of safety needs. Implications for future practices include increased training for all service providers in autism manifestation, autism levels, improved communication with family members, and understanding familial needs. Additionally, all service providers should become aware of the services available in their geographical area and actively work to ensure appropriate referrals for additional support. Implications for future research include conducting a similar phenomenological study with multiple researchers. Additionally, this study consisted of eight Caucasian families and one African family, limiting the transferability of the data. A wider variety of ethnic groups would allow the researcher to understand the impact that culture may have on the outcomes of the family, as it appears to have done in this study. [The dissertation citations contained here are published with the permission of ProQuest LLC. Further reproduction is prohibited without permission. Copies of dissertations may be obtained by Telephone (800) 1-800-521-0600. Web page: http://www.proquest.com/en-US/products/dissertations/individuals.shtml.] (As Provided). |
| Anmerkungen | ProQuest LLC. 789 East Eisenhower Parkway, P.O. Box 1346, Ann Arbor, MI 48106. Tel: 800-521-0600; Web site: http://www.proquest.com/en-US/products/dissertations/individuals.shtml |
| Erfasst von | ERIC (Education Resources Information Center), Washington, DC |
| Update | 2024/1/01 |
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