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ICF-CY Domains of Importance for Parents of Young Children with Autism Considering Treatment Outcomes and Quality of Life: Family-Centered Beyond Professional-Child Intervention.
Early Intensive Behavior Interventions (EIBI) that foster Parent Inclusion distinguish in the professional’s role to support the family to identify challenges to participation, and to instruct in ways that built child and family capacity. The International Classification of Functioning, Disability and Health - Children and Youth version (ICF-CY) framework support professionals consideration of parental perspectives on children’s Activities, Participation and Environmental Factors associated with EIBI.
Objectives:
This action research from Italy sought to (1) employ ICF terminology in categorizing the concerns and goals regarding EIBI based on a preliminary autism core set, (2) develop an extended schedule of the instrument to assess severity-related parent treatment priorities, (3) to document the association to perceived family Quality of Life, and (4) to assess the rate of agreement in treatment priorities based on child skill performance between parents and professionals.
Methods:
Through an action research process, 20 parents of preschoolers with autism spectrum disorders who received EIBi intervention with active Parent Inclusion provided ratings of parent Quality of Life (WHOQOL-BREF, WHOQOL group, 1998), child functioning (ICF-CY developmental code sets and autism-specific ICF-CY components, Castro et al., 2013; Boelte et al., 2016), and assigned each a measure of treatment priority. Each ICF-CY profile was analyzed by two clinicians, a neuropsychologist and a clinical supervisor, and clinically chosen treatment priorities assigned. A total of 130 ICF-CY categories were included. For analysis categories relevant in at least 30% of the cases were retained and reported as follows.
Results:
The resulting schedule retained N=69 items of parent concerns were distributed mainly across ICF-CY Activity and Participation (44 items), less across Body Functions (29 items) and Environmental Factors, (5 items). Parental concern and treatment priority varied with the content of unit analyzed with parents focussing mainly on psychosocial and communication functions. In addition parents demand high support priorities in managing health and social service systems and policies. In choosing treatment priorities parents apply a deficit-based selection approach coherently with high priorities where child’s abilities are lacking. Clinicians priority interrater agreement was high (kappa range .07 to .08), while parent - clinician interrater agreement was small to moderate (kappa range .04 to .06). A quadratic relation was found for child performance and clinician treatment priorities. Clinicians apply a strength - based approach to priority selection were basic skills are present and a deficit-based approach in major deficit areas that are defined teaching barriers (such as imitation, attention). Family Quality of Life was negatively impacted by poor child performance in communication, major life areas and handling demands , as well as lacking services that meet the child’s needs.
Conclusions:
The results indicate that (a) a functional perspective added to diagnostic indicators may inform intervention practices, and (b) environmental factors such as the professional-family rapport impact family Quality of Life and thus intervention outcome. We found that parents follow a need-based logic in treatment expectations, whereas professional treatment planning mainly incorporates a strengths-based logic following the notion of proximal development.