Yvonne Swinth, George Tomlin, Marge Luthman; Content Analysis of Qualitative Research on Children and Youth With Autism, 1993–2011: Considerations for Occupational Therapy Services. Am J Occup Ther 2015;69(5):6905185030. https://doi.org/10.5014/ajot.2015.017970
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© 2021 American Occupational Therapy Association
OBJECTIVE. Through a content analysis of qualitative research published 1993–2011, we sought to determine how qualitative research can inform clinical reasoning among occupational therapy practitioners to support evidence-based, occupation-focused services for children and youth with autism and their families.
METHOD. A qualitative literature search of journals inside and outside occupational therapy, including international journals, yielded 125 articles. We reviewed 110 articles that met inclusion criteria, 79 of which were coded by four occupational therapists with experience working with families with a child or youth with autism.
RESULTS. Nineteen content codes were initially derived. Three themes were identified: (1) service challenges for the family, (2) day-to-day experience of autism, and (3) reframing family.
CONCLUSION. This content analysis illustrates how qualitative research may help occupational therapy practitioners make comprehensive, occupation-based intervention decisions by considering the lived experience of children and youth with autism and their families.
Caregivers often first come into contact with service providers when seeking a diagnosis for their child. . . . This journey to diagnosis is often followed by entrance into the special education system. Once the child transitioned into the special education system, caregivers’ frustrations were unmistakable. Many caregivers did not feel heard or acknowledged. . . . One of the most significant findings of this study, seeing as communication and trust of professionals is a gauge of parental satisfaction, . . . [is that] “professionals in the medical field lack the patience and understanding of dealing with persons with autism.” The overwhelming conclusion from caregivers was the need for more education for some providers in the medical, judicial, and educational systems. (p. 31).
You don’t have a normal family life. Our whole family has to cater [to] Jane’s needs. You can’t go out very often as a family. You’ve got to watch [her] a lot more closely, a lot more closely than normal for [someone] her age. I think the whole family has more or less had to shoulder the burden and that includes [my sons]. (p. 1252)
If parents dwell on negative attributions of this event [having a child with autism], they are likely to cope poorly with the situation. In the present study, nearly every parent was able to describe a positive learning experience gained from raising his or her child. . . . They noticed that they became more patient, compassionate, humble, and accepting. . . . Parents did not resent their child and viewed him/her as an integral member of their family. Instead of struggling to find a way to cope with the situation, many parents stated that their coping mechanisms had improved, and they had developed more meaningful relationships with friends and family members. (Altiere & Von Kluge, 2009, p. 150)
Occupational therapy services with this population should consider not only the person with autism but also the impact on family routines, including access to services.
Optimal practice includes working directly with the child or youth with ASD while attending to the needs of family members and other stakeholders, providing effective coping strategies (Kuhaneck et al., 2010), addressing needs within organizations (e.g., helping organizations or systems understand the unique characteristics and mental health needs of this population; Brookman-Frazee et al., 2012), and addressing the needs of populations (e.g., helping parents of preschoolers contextualize the sensory experiences of their children; Dickie, Baranek, Schultz, Watson, & McComish, 2009).
Occupational therapy practitioners working with this population should consider the findings of both studies when completing the initial evaluation and throughout the provision of services. They should include questions regarding access to services, day-to-day routines, and family functioning as part of the occupational profile.
Inform clinical reasoning,
Understand the complexities families may face when negotiating systems,
Have a better understanding of the lived experience of autism,
Assist families in their reframing of what family occupations mean to them, and
Best apply the Framework when working with children and youth with ASD and their families by knowing how to move fluidly between top-down and bottom-up approaches during evaluation and intervention.
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