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Table 1 Summary of studies that met the criteria of the systematic review

From: Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue

Author
Date
(Study location)
ID Type and title Description and aim Study design, participants, and quality (MMAT) Findings Strengths and limitations
Bettag, 2016
(Hawaii) [65]
A Dissertation: Analysis of the adaptation of the responsive teaching paradigm to serve predominantly native Hawaiian communities: A framework for guiding culturally appropriate, family-centered, relationship-based early childhood services. Adapted and implemented a play-based, relationship-oriented program in low SES Native Hawaiian communities to strengthen caregiver-child relationships and improve children’s developmental functioning. Mixed methods naturalistic before and after design.
N = 44
Children (0–5 years) with developmental delay and their families.
Quality: Moderate.
Significant increase in children’s post program developmental outcomes across personal, social, cognitive, and communication domains.
Significant improvements were seen in the relationship between caregiver and child after completing the program.
Caregivers reported a high degree of satisfaction with the program and its benefits.
Each family received an in-home program of 24 weekly sessions tailored for their strengths and needs.
Used validated pre and post scales and semi-structured assessments.
Non-randomised single group study.
Emphasis on naturalistic validity and accessibility decreased experimental control and undercut causal relationship between program completion and outcomes.
Errors in coding of pre and post interaction videos led to lower inter-rater reliability of semi-structured assessments.
Findings were derived from the quantitative data only.
Attrition bias (61% attrition) threatens study validity.
Keightley et al., 2018
(Canada) [66]
B Article: Investigating a theatre-based intervention for Indigenous youth with Fetal Alcohol Spectrum Disorder (FASD) Used theatre-based activities (e.g., voice work, breathing, group dynamics) to facilitate social and emotional awareness of Indigenous children with developmental impairment associated with FASD. Qualitative exploratory case-series design.
N = 3
Children (9–14 years) with FASD or alcohol-related neurodevelop-mental disorder.
Quality: Moderate.
Qualitative data from participants, parents, and program facilitators 2 weeks post-program showed improvements in self-esteem, social skills, and emotional awareness. Included culturally relevant activities in the program (e.g., medicine wheel crafting, drumming).
Non-randomised single group study
Only anecdotal data was gathered from focus group follow up interviews, and not all participants contributed to the data.
Small sample size.
Lindblom, 2017
(Canada) [67]
C Article: ‘It gives them a place to be proud’- Music and social inclusion. Two diverse cases of young First Nations people diagnosed with autism in British Columbia, Canada. Used Indigenous music as a tool to promote a sense of inclusion in Indigenous children with ASD. Qualitative ethnography and Indigenous research methods design.
N = 2
Children with Indigenous status and ASD (1 boy: 8 years old; 1 girl: 16 years old).
Quality: Low.
Qualitative data suggested that traditional and contemporary music can be used to facilitate inclusion for Indigenous children with ASD through increased connection with people around them, including increased eye contact, singing, and playing of instruments together. Researcher collaborated with traditional Elders and knowledge holders.
Gathered data from semi-structured interviews, observations, field notes, and videos.
Conducted follow up interviews 12 months post intervention to strengthen interpretation of results.
Non-randomised single group study.
Small sample size.
Lindblom, 2017
(Canada) [68]
D Article: Exploring autism and music interventions through a First Nations lens. Qualitatively explored the meaning, purpose and use of music for First Nations children with ASD. Qualitative ethnography and Indigenous research methods design.
N = 5
Children with Indigenous status and ASD (4 boys: 6, 8, 12 and 15 years old; 1 girl: 16 years old).
Quality: Low.
Qualitative data suggested that music can improve mood, communication, relaxation and focus during study for First Nations children with ASD. Researcher collaborated with traditional Elders and knowledge holders.
Gathered data from semi-structured interviews, observations, and videos.
Conducted follow up interviews 12 months post intervention to strengthen interpretation of results.
Non-randomised single group study.
Small sample size.
Najera, 2012
(USA) [69]
E Dissertation: Adaptive behavioural analysis (ABA) in Native American homes: A culturally responsive training for paraprofessionals. Developed and evaluated a culturally adapted 3 module training resource for ABA tutors providing home-based support for Indigenous children with ASD. Qualitative design.
N = 3
Mental health professionals with experience of ABA and who worked with Native American populations.
Quality: Moderate.
Evaluators concluded that the resource required further development but could be used to support ABA tutors working with Native American families. Developed a culturally responsive training resource for ABA delivery in Native American homes.
Evaluators had experience of ASD and working with Indigenous people.
Non-randomised single group study.
Small sample size.
Only one evaluator identified as Indigenous.
Wagner et al., 2019 (Australia) [70] F Article: Improving self-regulation and executive functioning skills in primary school children in a remote Australian Aboriginal community: A pilot study of the Alert Program®. Piloted and adapted an 8-session weekly teacher-delivered self-regulation program in a rural Australian Indigenous community with a high prevalence of developmental impairment associated with FASD to improve students’ emotion regulation and executive functioning skills. Quantitative before and after design.
N = 25
Children in years 1 to 5 who had attended at least 20% of school over the past 6 months with or without a diagnosis of FASD.
Quality: Low.
Parents/caregivers and teachers reported a significant improvement in students’ emotion regulation and executive functioning.
Clinical improvements were more commonly reported by parents than teachers (executive functioning 33.3% vs. 26.1%; emotion regulation: 54.5% vs. 17.4%).
Collaborated with Aboriginal Elders and community, school staff, teachers and Aboriginal and Islander Education Officers to adapt and implement the program.
Teachers were trained to deliver the program and were supported during delivery.
Used validated scales to gather data from teachers and parents at 3 time points (pre, post and 8-week follow-up).
A measure of disruptive behaviour was used as a proxy measure for emotion regulation.
Non-randomised single group study.
Non-blinded intervention delivered to the whole class.
Small sample size.
Attrition bias (52% attrition) threatens study validity.
Wagner et al., 2019
(Australia) [71]
G Article: RE-AIM evaluation of a teacher-delivered programme to improve the self-regulation of children attending Australian Aboriginal community primary schools. Analysis of teachers’ experience of implementing an 8-session weekly teacher-delivered self-regulation program in a rural Australian Indigenous community with a high prevalence of developmental impairment associated with FASD to improve students’ emotion regulation and executive functioning. Mixed methods design.
N = 29
Classroom teachers from 8 primary schools in a rural Australian Indigenous community.
Quality: Moderate.
Teachers reported increased understanding of self-regulation and the Alert Program®, greater self-efficacy in managing student needs and behaviours, and inclusion of several positive changes to their teaching and behaviour management practices. Used a theoretically based evaluation framework to gather self-report data.
All teachers attended one of two training sessions.
21% of teachers did not attend both training sessions.
No independent fidelity checks: teacher self-reports of program implementation may have been biased by teachers’ motivation to portray full acceptance of the program.
Qualitative feedback was not actively sought from teachers, limiting understanding of teachers’ experience.
Attrition bias (41% attrition) threatens study validity.