As the United States has had a great awakening to racial inequality within many of the systems in our society that impact the quality of daily life for its citizens, we as occupational therapists are likely thinking, what do I need to address in my OT practice?
I am not yet a mother. I don’t have a child with special needs, and I am not latina nor black. My empathy in providing OT services can only go so far when attempting to offer practical and comparable insight to a parent who comes from a minority background and has a child with special needs. According to the 2019 Bureau of Labor Statistics data, the demographics of race are as follows for occupational therapists. Data for occupational therapy assistants was not available.
- White 75.7%
- Black or African American 10.2%
- Asian 12.4%
- Latino 10.2%
CPS Databases. (2020, January 22). Retrieved June 9, 2020, from https://www.bls.gov/cps/cpsaat11.htm.
That being said, while we need to work to increase the diversity of OT practitioners, we must also recognize the limitations of the insight we are able to provide. The numbers make it plainly obvious that most OT’s are white, which impacts our ability to provide first hand experience. The use of Family Peer Advocates (FPA) is an example of closing that gap.
Article Details
Journal
Journal of Autism and Developmental Disorders (SNIP score 0.984)
Article Title
Examining the Efficacy of a Family Peer Advocate Model for Black and Hispanic Caregivers of Children with Autism Spectrum Disorder
Level of Evidence
- 1A Systematic review of homogenous RCTs
- 1B Well-designed individual RCT
- 2A Systematic review of cohort studies
- 2B Individual prospective cohort study, low quality RCT, ecological studies; and two-group, non-randomized studies
- 3A Systematic review of case-control studies
- 3B Individual retrospective case-control study; one-group, non-randomized pre-post test study; cohort studies
- 4 Case series (and low-quality cohort and case control study)
- 5 Expert opinion without explicit critical appraisal
Methods
Thirty nine children (31 males, 8 females) were recruited through the Young Adult Institute/National Institute for People with Disabilities network. Referral criteria was having a previous diagnosis of an Autism Spectrum Disorder (ASD) or a suspected diagnosis as indicated by a school professional, clinician or other knowledgeable individual (Jamison et. al 2017, p. 1316). Inclusion criteria was an ASD diagnosis based on the DSM-5 per psychiatric evaluation, the Autism Diagnostic Observation Schedule-2 (ADOS-2) and the Autism Diagnostic Interview-Revised.
The researchers found no significant differences between the FPA and the control group for age, IQ or adaptive functioning of the children. The analysis indicated no significant difference between the FPA and control group for use of the number of services prior to the study (Jamison et al. 2017).
Selection of Family Parent Advocates
The Young Adult Institute (YAI) reached out to parents from the group who were active in the YAI community, had given presentations on supporting other parents or who staff identified as being “particularly skillful” in advocating for their family members. Four FPAs participated in the study. Each FPA worked with 3-7 families and received reimbursement for their time.
Training of Family Peer Advocates
FPAs completed 10 hours of training using an adapted Parent Empowerment Program curriculum. They spoke with a licensed social worker from YAI weekly to keep treatment fidelity. The FPAs consulted with their families at least 12 times over a 6 month period.
Members of the control group met with an intake specialist who determined their eligibility for services, provided program and clinic referrals to families as needed and assessed families’ level of motivation to follow through with services and recommendations (Jamison et al, 2017, p. 1317).
All participants completed parent report measures at 3 and 6 months with a retention rate of 85%. Participants completed the following measures:
- Maternal Autism Knowledge Questionnaire
- Caregiver Strain Questionnaire
- Parent Stress Index-Short Form
- Social Support Survey
- Family Empowerment Scale
- Autism Service Utilization Questionnaire
Meat and Potatoes
Investigators completed repeated measure and multivariate ANOVAs, which assess the relationship between and within multiple variables.
Maternal Autism Knowledge Questionnaire
All participants made significant improvement in their knowledge of Autism over the 6 months regardless of the group to which they belonged.
Parent Stress Index
Parents in the FPA group showed significantly greater improvements on the Parent Stress Index. Parents in this group also had statistically significant greater improvements on the Parental Distress, Parental Child Dysfunction Interaction and Difficult Child subtests of the PSI.
Caregiver Strain Questionnaire
Parents in the FPA group showed statistically significant greater improvement on Objective and Subjective Internalizing subscales of the Caregiver Strain Questionnaire. Researchers found no significant improvement on the Subjective Externalizing subscale for the FPA group vs. control.
Social Support Survey & Family Empowerment Scale
Researchers found no significant improvement on the Social Support Survey or Family Empowerment Scale for either group. Researchers found no change in utilization of ASD services for either group nor no statistically significant difference between outcomes when they analyzed groups by ethnicity. The study authors found no difference in outcomes when assessing family ethnicity, which indicates there was not a benefit to Latino-Latino vs. African-American-Latino pairings.
Things to Consider
The study authors mention that although both groups increased their knowledge of ASD, they found no improvement in service utilization. Research has shown that current systems sometimes correlate with decreased ease of access for minority families. The 6 month duration of the study and the fact the main services referred to in the study were from services through public schools could also have impacted this finding.
This study included FPAs who had high levels of education and experience in mentoring other families with children with disabilities. To increase the confidence of the use of FPAs in the community at large, a study should investigate the use of FPAs with a more diverse range of education and experience mentoring families. It would also be interesting to see the effects of male FPAs influence on family outcomes.
References
CPS Databases. (2020, January 22). Retrieved June 9, 2020, from
https://www.bls.gov/cps/cpsaat11.htm.
Jamison, J. M., Fourie, E., Siper, P. M., Trelles, M. P., George-Jones, J., Grice, A. B., Kolevzon, A.
(2017). Examining the Efficacy of a Family Peer Advocate Model for Black and Hispanic
Caregivers of Children with Autism Spectrum Disorder. Journal of Autism and
Developmental Disorders, 47(5), 1314–1322. doi: 10.1007/s10803-017-3045-0
