The purpose of this study was to identify and describe the most important characteristics of family centered care (FCC) among primary caregivers of children diagnosed with autism (ASD), and explore and describe primary caregivers’ perceptions of stressors over time associated with caring for a child diagnosed with ASD. Background ASD is a chronic condition often diagnosed in early childhood where persons exhibit deficits in social communication and interaction. The diagnosis of ASD is ‘life-altering’ for many primary caregivers as it does not end during childhood but extends into adulthood. Methods Descriptive Phenomenology was used along with purposive sampling to identify eligible participants. Following a demographic questionnaire, an in-person interview was conducted and recorded with an audio device. Interviews were transcribed, checked for accuracy, then entered into Ethnograph.
Participants in this study were 10 women and two males. The average age range of participants was 35.8-44.8 years. Two FCC elements emerged after analysis: 1. Primary Caregiver-Professional Collaboration and 2. Family-Family Support and Networking. In regards to the second aim, seven themes emerged: 1. ‘Oh, there’s nothing to worry about’; 2. ‘Ongoing Lack and Loss of Support from Friends, Family’; 3. ‘A very long waiting process’; 4. ‘Crash course of Information and Reassurance’; 5. ‘They don’t know how to help me’; 6. ‘Short-Term Uncertainty’; and 7. ‘Loss of Hopes and Dreams’.
No studies have examined the most important characteristics of FCC among primary caregivers of children diagnosed with ASD or described how primary caregivers’ perceptions of stressors changes over time while caring for a child diagnosed with ASD. This is important given the stressful experiences primary caregivers go through when caring for their child pre-diagnosis to future concerns. Primary caregivers described stressors impacting all family members, but remain hopeful by being their child’s greatest advocate.
Findings from this study can provide necessary information to design interventions and provide FCC tailored education to primary caregivers in an effort to meet their needs. Our findings will also help inform the development of more effective policies and interventions to provide long-term support for caregivers of children with ASD.
|Advisor:||Wright, Patricia B.|
|Commitee:||Mattews, Ellyn, Mitchell, Anita, Schulz, Eldon, Tilford, J. Mick|
|School:||University of Arkansas for Medical Sciences|
|School Location:||United States -- Arkansas|
|Source:||DAI-B 79/10(E), Dissertation Abstracts International|
|Keywords:||Autism, Caregiver, Family centered care, Parent|
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