Family-Centered Interventions for Children on the Autism Spectrum (2013–2021)

Full Systematic Review Question

This systematic review addressed the question “What are the effects of person-centered, student-centered or family-centered planning approaches on outcomes within the scope of occupational therapy for autistic persons and families of autistic individuals?”

Current Theme Reported

The main themes of the studies included in this systematic review brief are family-centered planning interventions for children on the autism spectrum.

Clinical Scenario

Collaborative partnerships between occupational therapy practitioners (OTPs) and clients drive the practice of occupational therapy (American Occupational Therapy Association, 2020). These partnerships depend upon client-centered care, which “incorporates respect for and partnership with clients as active participants in the therapy process.” Partnerships between OTPs and clients also “emphasize clients’ knowledge and experience, strengths, capacity for choice, and overall autonomy” (Schell & Gillen, 2019, p. 1194).

Person-centered planning (PCP) offers a “facilitated, individual-directed, positive approach to the planning and coordination of a person’s services and supports based on individual aspirations, needs, preferences, and values” (National Quality Forum, 2020, p. 7). Advocates and service providers frequently encourage the use of PCP to help empower people with developmental disabilities, including autistic children, adolescents, and adults. PCP can help develop increased self-determination by fostering meaningful efforts to explore, discover, and highlight unique preferences, needs, and wants (Kim, 2019). Furthermore, PCP can drive engagement in areas where autistic people may face major life challenges, such as health and well-being, relationships, safety, communication, home life, technology, community, resources, and assistance (National Quality Forum, 2020, p. 7).

In the context of pediatric service delivery, provider systems often recognize the family unit as the client (Darrah et al., 2012). Thus, family-supported PCP may involve various family members and regularly engage these caregivers in the therapeutic process (D’Arrigo et al., 2017). It may also target outcomes for the child, the caregivers, and the family unit that can help improve the quality of life (QOL) of the child (Dempsey et al., 2009). To implement PCP for autistic children, practitioners should strive to adopt and implement family-centered care. Family-centered intervention is “demonstrated by beliefs and practices that treat families with dignity and respect.” This approach “ensures the active involvement of family members in the mobilization of resources and supports necessary for them to care for and rear their children in ways that have optimal child, parent, and family benefits (Dunst, Trivette, & Hamby, 2008)” as cited in Bruder (2010, p. 341).

Family-centered interventions can emphasize ways to engage families in learning about their children and efforts to support their direct engagement in planning and implementing interventions. Key strategies may include building positive relationships with families, helping families learn new skills, reviewing potential options, and supporting families to serve as active participants in their children’s interventions, among other pursuits (Dempsey et al., 2009). Interventions that help support families may emphasize harnessing their children’s strengths, talents, and skills to achieve key goals and further develop their strengths. These efforts can also focus on ways to help family members participate and promote their full inclusion in core developmental, educational, social, and occupational domains of QOL. When equipped with needed supports to thrive, families with autistic children can pursue life activities that reflect their long-range goals, interests, values, hopes, and dreams for their children. These pursuits can then help drive efforts to enhance their QOL, health, and wellness (Carter et al., 2013; Bernhardt et al., 2020).

Summary of Key Findings

Of the 22 articles in the review, six articles (Table 1) (27%) focused on family-centered planning interventions directed at caregivers and are described in this Brief. The evaluation of certainty of available evidence in this systematic review brief adopts criteria from the National Professional Development Center on Autism Spectrum Disorder ([NPDC], n.d.; Young et al., 2010) which are commonly accepted by the field of autism research. Criteria from the NPDC classifies evidence for practices into the three categories of evidence-based, emerging evidence, and unestablished. Emerging evidence (NPDC, n.d.; Young et al., 2010) means two or more studies that: a) were of lower quality or had less-rigorous study design and b) had evidence that showed some or no effect and did not produce negative effects for participants (i.e., poor outcomes). The levels of evidence used in this review are from Oxford Centre for Evidence-Based Medicine (2009). The strength-of-evidence designations are based on the guidelines of the U.S. Preventative Services Task Force (2018). The strength-of-evidence designations are based on the guidelines of the U.S. Preventive Services Task Force (2018). Finally, study design and strength of evidence for causal relations for studies that used single-case experimental design methodology were evaluated using criteria developed for the What Works Clearinghouse (Kratochwill et al., 2010). After analyzing the six articles included in this Brief, one key theme was identified: emerging evidence from these six studies supports the use of coaching interventions with caregivers to address both child and parent outcomes which include individualized goals; caregivers’ sense of competence, empowerment, or self-efficacy; occupational performance of children and mothers; and caregiver satisfaction with their child’s occupational performance.

Bottom Line for Occupational Therapy Practice

Occupational therapy practitioners often support caregivers of children on the autism spectrum to identify unique goals for their children and devise key strategies to help their children achieve these parent-identified goals. Practitioners should consider using manualized or other thoroughly described and evidence-based coaching approaches when supporting caregivers in this way and to help improve parental ratings of importance and satisfaction with their children’s occupational performance. Most evidence on caregiver coaching has involved studies with young children between 3 and 7 yr of age, although two studies included parents of children from age 2 to 12. Emerging evidence indicates that caregiver coaching is also somewhat effective for improving parents’ sense of competence and parents’ self-efficacy. However, effect sizes and statistical changes were inconsistent across the available evidence. Other family-centered approaches that address unique focused needs of children, such as feeling highly distressed by certain sounds and narrow dietary and eating habits, also show emerging evidence. However, there is less overall evidence to support specific approaches for addressing these focused needs.