None listed
Conditions
Brief summary
Despite there being several promising evidence-based early support services designed for young autistic children and their families, access to these services does not currently appear to be equitable. A family’s available economic resources appear to impact upon support service access and/or participation. One way in which greater equitability could be obtained is through adapting a support service to a specific population. Forming such adaptations through community-research partnerships ensure approaches are relevant to the targeted population. Minimal research has been conducted which has utilised a research-community partnership to adapt an early autism support service to the needs of lower income families. The aim of this study is to evaluate parent/caregiver perceptions of the acceptability and impact of an adapted support program based upon the Early Start Denver Model (ESDM), when delivered to one lower income parent of an autistic child. The study aims to answer the following three questions: The following questions pertain to one lower income parent with an autistic child: 1. How does the parent describe their experience of receiving an adapted ESDM-based program? 2. Does the parent find an adapted ESDM-based program acceptable? 3. How helpful does the parent find the adaptations to the ESDM-based program? We hypothesise that: (1) the parent will generally have a positive perception of the adapted program; (2) individualised adaptations to the ESDM program will be acceptable to the parent involved; and (3) the adaptations will generally be rated as helpful or very helpful in increasing access to and/or participation in the ESDM program.
Interventions
The proposed case study will investigate both acceptability and parent perceptions of an adapted version of the Early Start Denver Model (ESDM) aimed at increasing accessibility and participation for lower income families. These adaptations have been developed to improve access and participation for lower income families, who access autism support programs at a reduced rate ((Nguyen et al., 2016; Pickard & Ingersoll, 2016) and face a higher number of barriers to such services when compared to hi
The proposed case study will investigate both acceptability and parent perceptions of an adapted version of the Early Start Denver Model (ESDM) aimed at increasing accessibility and participation for lower income families. These adaptations have been developed to improve access and participation for lower income families, who access autism support programs at a reduced rate ((Nguyen et al., 2016; Pickard & Ingersoll, 2016) and face a higher number of barriers to such services when compared to higher income families (Wallace-Watkin et al., 2023). A key part of this adapted program is focused on parent choice. Parents will have the opportunity to build their own program of support based upon ESDM including selecting the topics they wish to gain education on. Topics offered will include education on autism, neurodiversity, and personalised ways to embed learning strategies into daily routines. Parents may choose the way in which the ESDM-based program will be delivered, either having the therapist work directly with their child, with the parent, and/or with the child’s teacher. Extended family members will be warmly invited to attend sessions at the parents’ request. Sessions will run for between 45 minutes to one hour either in person at the family home or at the Victoria University of Wellington Autism Clinic, or for parent/teacher coaching there will be the option to attend online via Zoom. Parents will select the location and method of delivery which best suits them and their family. The support service will be provided by a community therapist - the lead researcher – who is a current PhD candidate with training (however is not certified) in the Early Start Denver Model (ESDM) approach, has worked with several families and/or their young autistic children over the past three years, and has over 10 years’ experience working with primary school aged autistic children in an educational setting. Additionally, the lead researcher has received training and education in neurodiversity affirming practices. The ESDM-based support program will consist of six sessions each of direct therapy, parent coaching, and/or teacher coaching based upon the delivery method/s the parent has chosen. That is, parents may choose to receive up to six sessions of each delivery method (direct therapy, parent coaching, and/or teacher coaching) for a total number of 18 total sessions. It is anticipated these sessions will be delivered over six weeks, however an additional two weeks have been allocated at the end of the program to allow for catch-up sessions if cancellations have occurred. As aforementioned, the key adaptation to the program is an increase in parent choice, allowing for increased flexibility of the program. Additional ways this program has been adapted is to remove elements (i.e. child goals) which focus on neurotypical-based skills (e.g. making eye contact, specific approaches to play), offer opportunities to focus on child well-being and experience, increase the neurodiversity affirming content, removing technical language, removing costs by offering the program for free, and covering any potential travel costs. Program adherence will be monitored through the use of session attendance checklists for each of the chosen delivery methods, as well as recording of reasons for cancellations/reschedules where the parent shares this information. Nguyen, C. T., Krakowiak, P., Hansen, R., Hertz-Picciotto, I., & Angkustsiri, K. (2016). Sociodemographic disparities in intervention service utilization in families of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(12), 3729–3738. https://doi.org/10.1007/s10803-016-2913-3 Pickard, K.E., & Ingersoll, B.R. (2016). Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use. Autism, 20(1), 106-115. https://doi.org/10.1177/1362361315569745 Wallace-Watkin, C., Sigafoos, J., Woods, L., & Waddington, H. (2023). Parent reported barriers and facilitators to support services for autistic children in Aotearoa New Zealand. Autism, Advanced online publication. https://doi.org/10.1177/13623613231168240
Sponsors
Victoria University of Wellington
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Treatment
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
This study will include one parent/caregiver (herein collectively referred to as parent) of a child who is under the age of five who is, or is likely to be, autistic. The parent will also meet the following inclusion criteria: (1) lower income as defined as being eligible for or receiving an income-tested benefit or a community services card (A community services card (CSC) assists families with the costs of healthcare in New Zealand. This initiative is income-based and targets lower income New Zealand families/whanau), (2) speaks sufficient English to understand study requirements, written content, and to participate in one-on-one sessions, and (3) consents to being involved in the case study. The first eligible parent to make contact and provide informed consent will be included. Any of the child’s caregivers may participate, including parents of any gender, step parents, and extended whanau members. The family will be asked to elect one person to be the primary participant who will attend all sessions, fill in all surveys and take part in the semi-structured interview. Other parents/caregivers and/or extended whanau members may choose to participate in the program sessions and semi-structured interview if they wish.
Exclusion criteria
1. The participant is not a primary caregiver of an autistic child.
Outcome results
None listed