Exploring one Whānau Māori’s experience with an autism support program: a case study

Tupou, Jessica; Ataera, Chevelle; Waddington, Hannah

doi:10.1080/23297018.2022.2051197

Cited by 4 publications

(5 citation statements)

References 24 publications

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“…Research exploring parent and teacher perceptions of supporting tamariki takiwātanga (Autistic Māori children) has suggested that including Māori cultural resources, te reo (language), and activities is important, and, that support approaches that align with a neurodiversity perspective might also align with te ao Māori (Māori world view; Tupou et al, 2022;2023). One of the participants in the current study, whose child was also Māori, commented on how some of the video examples from Help is in Your Hands were not neurodiversity affirming.…”

Section: Discussionmentioning

confidence: 99%

“…Several implications for clinical practice could be drawn from these findings. First, it is imperative that Autism service providers in New Zealand are responsive to the diverse needs of Māori accessing Autism early supports (Tupou et al, 2022). Translation services and cultural advisors could also facilitate access to support services for underrepresented cultural groups (Wallace-Watkin et al, 2022).…”

Section: Implications and Future Researchmentioning

confidence: 99%

“…In particular, many of these participants gave valuable insight into their perceptions of the cultural fit of this programme. There are several adaptations that could be made to future P-ESDM programmes delivered in New Zealand to increase their socio-cultural validity, including (a) incorporating Māori cultural resources, te reo (language), and activities (Tupou et al, 2022;2023), (b) starting sessions with karakia (Māori prayer or incantation), (c) involving interpreters, cultural advisors, or providing resources in families' first language, and (d) having an awareness and sensitivity towards parents who are navigating different cultural perspectives such as believing Autism is "a curse".…”

Section: Diversity Affirming Practicesmentioning

confidence: 99%

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Evaluation of a Two-Tiered Coaching Programme for Parents of Young Autistic Children

van Noorden

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Autism is a form of neurodivergence characterised by differences in social communication, the presence of passionate interests, and a preference for predictable activities and routines. Early support programmes can enhance the development of Autistic children and can lead to improvements in areas such as communication, play skills, cognition, and social engagement. Naturalistic developmental behavioural interventions (NDBIs) are a promising early support approach. Parent-mediated programmes, including parent-mediated NDBIs, are also a promising approach for supporting the learning and development of Autistic children. The rationale for parent-mediated supports includes the possibility that parents are well-placed to deliver teaching and learning opportunities throughout their children’s every-day routines, which may lead to greater consistency of learning and thus improved child outcomes. There may also be benefits for parents who participate in these programmes including improving parental stress and self-efficacy, as well as parent sense of competence and family cohesion. Additionally, parent-mediated approaches are a time and cost-effective alternative to intensive clinician-implemented supports. Despite the theoretical rationale for such approaches however, parent and child outcomes from individual parent-mediated NDBIs are variable. Therefore, more research is needed to understand the impact of parent-mediated NDBIs, and to evaluate adaptations that may improve the fit between parent and child needs, and the models that aim to support them. Tiered programmes or “stepped care” approaches may be an appropriate way to individualise the supports that families receive, while prioritising efficient service delivery. In a multi-tiered approach, individuals receive low-intensity support in initial tiers, and can then step up to higher levels of support if needed. This thesis consists of three main components. The first component was a systematic literature review of single-case evaluations of parent-mediated NDBIs. That review reports on study quality, participants, programme characteristics, aims, and outcomes across 17 studies published in the last 10 years (2014-2013). The second component was an original empirical study using a single-case multiple baseline design. The aim was to evaluate the efficacy of a two-tiered parent-coaching programme based on the Early Start Denver Model (ESDM) – a comprehensive NDBI – for seven Autistic boys (aged 36-52 months) and their parents (5 mothers, 2 fathers). After a 10-week group coaching programme (Tier 1), all parents had increased their use of ESDM strategies. Changes in parent fidelity during the additional individual coaching (Tier 2) were mixed, but all parents maintained higher than baseline levels of fidelity. There were positive changes in parent stress levels pre- post-coaching. Across the two-tiers, positive results were found for most children’s levels of engagement, imitation, and communication. There were significant positive relationships between parent fidelity and both child engagement and child functional utterances.The third component was a qualitative study involving reflexive thematic analysis to analyse parents’ perceptions of participating in the two-tiered support programme. Four key themes and 13 subthemes were developed. The themes centred on (a) programme accessibility and participation, (b) experience of the two-tiered coaching process, (c) commitment and perseverance, and (d) outcomes. Several parents described barriers to accessing this programme including cultural considerations. Parents described many benefits of the two-tiered coaching design, and both strengths and challenges regarding the programme content, duration, process, coaching approach, and child experience. Parents reported both barriers and facilitators to implementing the programme strategies at home. Overall, parents were mostly satisfied with the programme outcomes, citing improvements for their child, themselves, and their families. Together, the results from these studies provide preliminary support for the feasibility, acceptability, and effectiveness of delivering parent mediated ESDM (P-ESDM) in groups, and for individualising supports in additional tiers for some families. More research is needed to see if these findings are replicable with larger sample sizes, and through community rather than researcher implementation. It would also be valuable to explore different approaches to customising supports in more intensive tiers, to better meet the unique needs of individual families.

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Section: Discussionmentioning

confidence: 99%

Section: Implications and Future Researchmentioning

confidence: 99%

Section: Diversity Affirming Practicesmentioning

confidence: 99%

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Evaluation of a Two-Tiered Coaching Programme for Parents of Young Autistic Children

van Noorden

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“…This case study emphasises the need for greater understanding of the barriers to autism support faced by whānau Māori (Māori families). As noted by Tupou et al (2022), there is a lack of culturally appropriate services in Aotearoa New Zealand which meet the needs of a broad range of whānau Māori (Māori families) with tamariki takiwātanga (autistic children). Though the therapist in this case study had some knowledge of Te Ao Māori (Māori world views) delivery of the programme may have been enhanced by a greater knowledge of specific concepts.…”

Section: Discussionmentioning

confidence: 99%

“…Of course, not all whānau Māori (Māori families) or Māori children come from lower financially resourced households. The results of a recent scoping review of the literature undertaken byTupou et al (2022) suggested a need for more culturally responsive services to better meet the needs of all whānau Māori (Māori families). Therefore, autism support services should be adapted to the Aotearoa New Zealand context by taking cultural considerations into account.Presently, there does not appear to be research examining the potential of using parent feedback alongside community provider input to adapt an early autism support service.…”

mentioning

confidence: 99%

Barriers, Facilitators, and Adaptations to Autism Support Services for Lower Income Aotearoa New Zealand Families

Wallace-Watkin

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Classified as a form of neurodivergence, autism is recognised as consisting of differences in sensory and cognitive processing, social interactions, and preferences for routine and structure. Research suggests that the provision of autism early support services is associated with a range of beneficial outcomes for autistic children and their whānau (family). Ideally, the needs of each individual family and child would dictate access to such support services. However, lower financially resourced families with an autistic child appear to face several barriers to receiving support services. Literature examining the adaptation of pre-existing early autism supports to address disparities in access and participation is limited. Utilisation of methods such as research-community partnerships to inform such adaptations is also rare. More research is needed to understand the barriers and facilitative factors lower financially resourced families may experience when seeking to access and/or participate in autism support services for their autistic child. Such research may then inform the adaptation of autism support services to increase accessibility, and therefore improve equity within autism service systems.The present thesis consists of three empirical studies. Study 1 assessed the barriers and facilitators Aotearoa New Zealand parents reported experiencing when accessing and/or participating in support services for their autistic child. Study 2 utilised a research-community partnership approach to explore the experiences of five lower financially resourced Aotearoa New Zealand parents who had accessed an autism support service, the Early Start Denver Model. Results informed the development of a set of adaptations to improve the accessibility of this service. Study 3 consisted of piloting the adapted support programme with one lower financially resourced whānau (family). Study 1 results suggested that lower income families experienced a significantly greater number of barriers, and experienced those barriers to a greater extent, than families who were higher income. The results of study 2 identified several facilitative factors and barriers to the Early Start Denver Model programme, with both parents and community partners providing a broad range of ideas for possible adaptations. Results from study 3 suggest that adaptations to support services which target the needs of lower financially resourced families may indeed be useful for improving accessibility of such services.Collectively, the results of these studies indicate that lower financially resourced families experience a range of barriers to autism support services for their children, but also several facilitative factors. Both parents and providers have ideas of ways in which service access and participation could be improved. Through applying such ideas to the adaptation of pre-existing early autism support services, it appears as though accessibility of such programmes may be improved for lower financially resourced. Future research further examining the impacts of adapted services on autistic children and their whānau would be beneficial.

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Commentary on “Exploring one Whānau Māori’s experience with an autism support program: a case study” (Tupou, Ataera, & Waddington, 2022)

Gardiner

Sigafoos

2022

Research and Practice in Intellectual and Developmental Disabil

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Exploring one Whānau Māori’s experience with an autism support program: a case study

Cited by 4 publications

References 24 publications

Evaluation of a Two-Tiered Coaching Programme for Parents of Young Autistic Children

Evaluation of a Two-Tiered Coaching Programme for Parents of Young Autistic Children

Barriers, Facilitators, and Adaptations to Autism Support Services for Lower Income Aotearoa New Zealand Families

Commentary on “Exploring one Whānau Māori’s experience with an autism support program: a case study” (Tupou, Ataera, & Waddington, 2022)

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