“To Show That There Is Hope”: A Mixed Methods Exploration of Parent Perspectives About an Online, Co-Facilitated Parenting Program for Carers of Adolescents with Disability

Abstract

Adolescence is a developmental period of significant change and increasing independence, during which parents and caregivers play a critical role guiding their teen toward adulthood. Parents of adolescents with disability face heightened challenges managing their teens’ growing independence and shift to adult-based services across health, recreation, and employment. Using a mixed-methods-treatment-group-only design, this study explored the implementation and outcomes of a program designed to build parenting capacity to support their adolescent with disability. Parents enrolled in one of ten groups were invited to attend three sessions covering content tailored to adolescent development including post-school opportunities, financial support, risk-taking and decision-making, future planning, relationships, and mental health. Surveys were administered pre-program, post-program, and six months after program participation (n = 160) to measure intervention outcomes including parenting self-efficacy, self-advocacy, adolescent self-advocacy, parent confidence to support their adolescent’s growing independence, confidence to support their adolescent through sensitive developmental stages, parental hopes and aspirations, and parental empowerment. A subset of parents (n = 11) also participated in semi-structured interviews about the program’s acceptability and usefulness, and their satisfaction with the program content and delivery. All outcome variables except parent hopes and aspirations increased significantly from pre- to post-program. Parent self-efficacy, self-advocacy, and parental empowerment remained higher 6 months after program completion. Thematic analysis identified program strengths as the co-facilitation model of program delivery, practical and actionable content, the use of narratives and the facilitator’s lived experience as parents of adolescents with disability, the use of visualizations (video, pictures, diagrams), and the service provider’s trusted reputation and credibility. In conclusion, an online co-facilitated group program for parents of adolescents with disability can contribute to positive change for families by improving parent confidence, self-advocacy, and parental empowerment.

1. Introduction

Parents and caregivers play a central role supporting their adolescent with disability and are often the primary source of care during their teenager’s transition to adulthood. The adolescent years signify a rapid shift toward independence, where adolescents with disability need more parental support than adolescents without disability across a range of psychological, behavioural, emotional, and social domains [1,2,3,4], even if they have capacity to begin accessing their own supports. Expectations around an adolescent’s increasing independence may also manifest differently across disability severity and functioning, and parents are required to navigate a wide range of issues with varying access to resources. Changes in government, education, and healthcare service supports or requirements tend to occur in the adolescent years and as a result parent support needs, which span both informal and formal, often shift during this period as their child transitions into adult-based services [1]. Parents can therefore face additional stressors and burden managing these adjustments, alongside their adolescent’s developmental changes.

It is well documented in the literature that parents of adolescents with disability report higher stress levels [4,5,6] and a lower quality of life [7,8] than parents of adolescents without disability. These findings are similar across metropolitan and regional areas [9]. In a survey of 2596 parents in Victoria, Australia, 28% of parents said their adolescent aged 15–18 years had developmental concerns including sensory, learning, speech and language, behavioural or conduct, intellectual, Autism Spectrum Disorder (ASD), and anxiety and depression, with 18% of parents of an adolescent with disability reporting serious or clinical levels of psychological distress [10]. Results of the survey also indicate that these parents worry ‘a lot’ compared to other parents with children of the same age without developmental concerns. High levels of stress and worry may attenuate parent capacity to manage the additional parenting load these families face [5].

Targeted interventions and parenting programs are important to supporting the mental health and wellbeing of parents with a child with disability [11]. Most parenting programs designed to support parents and improve parenting capacity for parents of children with disability have been targeted toward parents of younger children (for example, Ashori et al. and McIntyre et al. [12,13]), and few programs have been developed or adapted to attend to the unique needs of parents raising an adolescent with disability. Participation in programs intended for parents of teens without a disability could be a source of emotional distress in relation to milestones or developmental stages that may be difficult, different, or not possible for their own teen with disability. A qualitative study by Hamilton et al. [5] explored the challenges experienced by parents of adolescents with disability, identifying several difficulties parents face in supporting their young person, in addition to grief and stress associated with their adolescent’s disability. Most parents agreed that a specific, relevant parenting program was needed and that they would be likely to attend such a program. The authors concluded that these parents would benefit from modifications to an existing evidence-based program (Triple P) to support parent needs specific to the adolescent developmental stage.

There is an imperative to provide targeted support to families with adolescents with disability in order to enhance parental wellbeing and capacity and normalize the lived experiences of these families. Whether a ‘visible’ physical disability or a condition or syndrome impacting cognitive ability or social and emotional functioning, parents have reported stigma and judgement, which in turn places parents at risk of poor emotional and physical health [14,15]. Compared to 12% of parents of adolescents without disability, 21% of parents of adolescents with disability report feelings of guilt or concerns about negative judgement, while a small proportion of parents (almost 1 in 10) feel judged, blamed, or criticised by professionals [10]. One approach to normalizing experiences and reducing stigma or guilt often associated with disability is to employ facilitators who can bring their own lived experience to the program. Facilitator characteristics such as knowledge of the content, experience, and positive and relatable values and attitudes, have been reported to be important components of effective program delivery and outcomes [16]. People with lived experience can be engaged in all aspects of the program including design and delivery and can guide the content toward a balanced perspective informed by direct experience [16,17]. Facilitators with lived experience can also help to reduce feelings of negative judgement sometimes attached to disability or mental health problems [16].

Parenting programs have traditionally been delivered in-person; however, during the COVID-19 pandemic, there was a government requirement for many service providers in Victoria, Australia, to adapt programs from in-person to virtual delivery. Familiarity with online communication has risen dramatically in recent years [18] and is seen as an acceptable mode of program delivery by service providers [19]. Parents taking part in telehealth have reported several benefits including convenience, no travel time or cost, reduced childcare requirements, and less time away from employment [20,21]. Service providers may be able to offer more flexible service provision, reach more clients, reduce travel for facilitators, and offer additional sessions and/or more varied times [22]. The provision of materials which are instantly available as weblinks or a download during the session may streamline costs. However, negative aspects of virtual parenting programs described in the literature include ‘zoom fatigue’ for sessions over one hour in duration, challenges relating with others online or building a rapport in an online forum and technological challenges [13,23]. Given parents of adolescents with disability experience an increased burden on their time, employment, and expenses, it might be hypothesized that despite these potential barriers, this population may find online parenting programs convenient and efficient.

The Teens and Beyond Program

This study explores the perspectives of parents who took part in Teens and Beyond, a parenting program specifically designed by the Association for Children with Disability to support and build the capacity of families of adolescents with disability. The program was developed through an iterative process of discussion and feedback between practitioners with lived experience and parents, and this method guided the decision to embed potentially triggering material across the three sessions, thereby reducing the risk of eliciting adverse reactions in any one session and facilitating engagement in the program. The decision was also made not to present adolescent developmental topics in a ‘chronological’ way to avoid the risk that parents would only attend sessions directly relevant to their teen’s current age and developmental stage.

Increased levels of parental self-efficacy, knowledge, and skills can predict positive outcomes for children [24,25], while also being malleable, practical targets for intervention [26]. The Teens and Beyond Program content therefore aimed to improve self-efficacy, self-advocacy, hopes and positive aspirations for their teen, and confidence to support their teen across six domains of adolescent development, including post-school opportunities, future planning, relationships, mental health, financial support, and risk-taking and decision-making. It was also intended that the context of shared lived experience in the group would help normalize family experiences.

The aim of this study was to evaluate the fidelity and impact of the Teens and Beyond Program on the targeted outcomes described above. The evaluation involved a quantitative and qualitative exploration of both parent and facilitator views of the effectiveness, delivery, and impact of a co-facilitated online program. Specifically, the evaluation was informed by the following three questions: (a) what are parent perspectives of the program, including its processes and implementation; (b) what did parents perceive as the key benefits of the program in relation to targeted outcomes for families; and (c) does the program improve parent self-efficacy, self-advocacy, and capacity to support their adolescent’s growing independence?

2. Method

2.1. Participants

A total of 160 parents participated in the evaluation of the Teens and Beyond program, conducted between June 2021 and December 2022. All parents enrolled in the Teens and Beyond Program were eligible to take part in the evaluation. The average age of parents was 47.6 years (SD = 6.25, n = 139) and most were female (96%) and the biological parent (88%) of the adolescent. One parent reported being Aboriginal but not Torres Strait Islander, while 24% of parents were from culturally and linguistically diverse backgrounds. A bachelor’s degree or higher qualification was held by 54.3% of the sample. The most common work activities were part-time paid employment (31.3%) and home duties/carer of children (30.6%), while 13.1% of parents were in full-time paid employment. Over half the sample (51.2%) were receiving parenting or family support services, usually National Disability Insurance Scheme (NDIS) support (n = 29), carers payment (n = 19), or a respite or home care service (n = 19).

Parents attending the program reported that the average age of their adolescents was 14 years and 11 months (SD = 1.74, n = 143) and were mostly male (63.7%), with 1.9% reported by their parents as non-binary or gender diverse. Seventeen parents did not provide their adolescent’s age. Adolescent primary disability reported by parents is presented in Figure 1. In addition, one parent reported deafness/blindness as their adolescent’s primary disability.

Parent interviews were conducted with a smaller sub-sample of eleven parents drawn from the broader survey sample of 160 parents.

2.2. Design

A mixed-methods, treatment group only research design was adopted, incorporating qualitative data via in-depth parent interviews, and quantitative data from a series of repeated-measures surveys administered to parents at three-time points: pre-program, post-program, and six months follow-up. The evaluation was approved by the Human Research Ethics Committee (app62).

2.3. Measures

2.3.1. Parent Survey Questions

Parents were surveyed at three time points: prior to taking part in Teens and Beyond, immediately after the final workshop, and six months after completion of the program. In addition to demographics, there were seven components of the 20-item survey which were all measured on a 5-point Likert scale from 1 = strongly disagree to 5 = strongly agree. The seven components were: parent self-efficacy, parent self-advocacy, perception of teen’s self-advocacy, capacity to support teen’s growing independence, parental hopes and aspirations for their teen’s future, confidence to discuss sensitive topics with their teen, and parental empowerment. Excluding self-efficacy, all measures were designed in-house during consultation between Association for Children with Disability team leaders and the research team at the Parenting Research Centre and showed sufficient to excellent internal consistency. The need to develop new items to measure some constructs was due in part to the dearth of measures deemed appropriate and suitably sensitive for this population that would tap into the specific targeted outcomes of the program. Scale brevity was a key consideration to minimise burden on the parent, with survey items worded to reflect compassion and understanding, and minimise the risk of a negative impact on parent wellbeing.

Demographics. To assist with survey matching across time and to describe the sample, twelve demographic items were collected at the start of the pre-program survey, including parent gender, age, cultural background, Aboriginal or Torres Strait Islander identity, education background, employment status, postcode, and whether family or disability support services were being accessed. Parents were also asked about their adolescent’s primary disability, age, and gender. Response options were categorical.

Me as a Parent Scale Short Form (MaaPs-SF) [27]. The MaaPs-SF, a short-form version of the 16-item Me as a Parent scale [28], assessing parental self-efficacy, was administered at each time point and included the following items: “I have confidence in myself as a parent”; “I know I am doing a good job as a parent”; “I have all the skills necessary to be a good parent to my child”; and “I can stay focused on the things I need to do as a parent even when I’ve had an upsetting experience”. Higher scores on the MaaPs-SF indicate higher levels of self-efficacy, with responses averaged to achieve an overall score. The scale showed good internal reliability in the current sample (α = 0.82), which corresponds to the scale’s published internal reliability (α = 0.82) [27].

Parent self-advocacy. Parent self-advocacy was measured by three items, with higher scores reflecting higher levels of self-advocacy belief: “I am able to speak up about what our family’s needs are to specialists and service providers”, “I know how to access the services and supports that we need, when we need them”, and “I am able to speak up when a service or program is not meeting our family’s needs”. Internal consistency was moderate (α = 0.70).

Adolescent self-advocacy. Parent perceptions of their adolescent’s ability to self-advocate was measured with two items: “I feel confident supporting my teen to speak up for themselves” and “I can help my teen learn to speak up about their needs and wants”. Higher scores indicated stronger confidence in supporting their adolescent’s ability to self-advocate. The scale showed excellent internal consistency (α = 0.90).

Adolescent independence support. Parental capacity to support their adolescent’s growing independence was measured with six items, where higher scores reflected greater capacity: “I know how to support my teen’s independence at home (e.g., chores, cooking, cleaning)”; “I know how to support my teen’s independence in the community (e.g., using public transport, shopping, road safety)”; I can help my teen identify and manage risk when they make decisions”; “I can help my teen to plan and prepare for their future (e.g., housing, financial or educational needs)”; “I feel able to support my teen as they become more independent”; and “I can help my teen access supports, tools and training if they need them”. The scale’s internal consistency was strong (α = 0.86).

Parental hopes. Parent hopes and aspirations for their adolescent’s future was measured with two items, where higher scores reflected higher hopes: “I have hopes that my teen will be able to independently participate in enjoyable work” and “I have hopes that my teen will be able to independently enjoy social activities”. The scale had strong internal consistency (α = 0.88).

Confidence to discuss sensitive topics. Parent confidence to discuss sensitive topics with their adolescent was measured with two items, with higher scores indicating greater confidence: “I feel confident talking with my teen about potentially sensitive topics (e.g., puberty)” and “I feel confident supporting my teen through potentially sensitive stages of adolescence”. The scale’s internal consistency was strong (α = 0.86).

Parent empowerment. Parental empowerment was assessed by one item, “I feel empowered to support my teen’s growing independence”, where a higher score indicated a greater sense of empowerment. As a single item there was no internal consistency measure.

2.3.2. Parent Interview Questions

In-depth, semi-structured interviews were conducted with 11 parents who had participated in one of the first two rounds of the Teens and Beyond program between June and October 2021. Parents were asked nine open-ended questions with some prompts. In addition to gathering some background information about the family and their adolescent with disability, questions included: “Could you tell us about your experience of the Teens and Beyond program in general?”, “What did you enjoy about it (if anything)?”, “Was there anything that you didn’t like?”, “How relevant did you find the program information?”, “How helpful did you find the information?”, “What changes did you and your family experience (if any) after the program (prompts: practical, views or opinions, routines and roles in the home)”, “Are there needs for your family that weren’t addressed by the program?”, “How did you find the online delivery of the program? What were the positive/negative aspects?”, “How easy or difficult was it to participate (what things made it easier/harder?)”, “What would help or encourage you to participate in a similar program in future?”, and “How could the program be improved to better meet the needs of families in future?”.

2.4. Procedure

Three groups of the Teens and Beyond program were run in June 2021, four groups in October 2021, and three groups in May 2022, with a total of 251 parents registered across all ten groups. At the time of registration, parents were invited to participate in the evaluation activities and were emailed an information statement prior to attending their first online session.

2.4.1. Program Delivery

Originally intended for a face-to-face group, delivery of Teens and Beyond was transferred to a virtual online mode during the piloting phase due to the COVID-19 pandemic health risks and government restrictions on in-person activities. All program facilitators were trained and were involved in the development of the program content. Facilitators had experience facilitating parent groups in the disability sector as well as lived experience as a parent who had raised an adolescent with disability. The Teens and Beyond workshops were delivered once per week over three consecutive weeks, and each session was approximately 2 to 2.5 h in duration. Retention rates across the 10 groups are presented by group, weekday, time of day, and session number in

Table 1. Workshop retention rates (%).

	June 2021			October 2021				May 2022
Session	Tue PM **	Tue AM *	Sat AM *	Thu PM **	Tue PM **	Wed PM **	Tue AM *	Tue AM *	Tue PM **	Wed AM *
Week 1	72%	70%	48%	79%	46%	44%	72%	100%	58%	75%
Week 2	59%	52%	24%	58%	49%	44%	50%	56%	39%	44%
Week 3	52%	41%	29%	38%	29%	44%	44%	62%	45%	31%

* AM denotes a workshop time commencing between 9 a.m.–noon. ** PM denotes a workshop time commencing in the evening, after 5 p.m.

.

2.4.2. Parent Surveys

The program was delivered on Zoom software (Version 5), and online survey links were provided in the chat function of Zoom during a five-minute introductory segment. Those parents who were interested in participating in the evaluation could click on the weblink which opened the survey in a new window, while parents who decided not to take part had a few minutes to otherwise prepare for the program to commence.

Surveys were administered prior to commencing the first session (‘pre’), immediately after the final session (‘post’), and again six months later (‘follow-up’). After parents logged in to the first online workshop, facilitators briefly described the evaluation to ensure parents had a clear understanding of their involvement if they decided to participate and of the voluntary and confidential nature of participation. It was also emphasised that their decision to take part would not impact their access to the Teens and Beyond program, or any future access to the organisation’s programs or resources. To assist the matching of participant responses across timepoints, participants recorded the last four digits of their mobile number as a unique identifier, which was thought to ensure anonymity while remaining relatively static over the six-month data collection period. Survey responses were saved online in FormAssembly and uploaded by the Association for Children with Disability program manager to a shared, restricted access folder on the evaluator’s server.

Approximately half of the parents taking part in the evaluation completed one survey (n = 81), one third of parents completed two surveys (n = 57), and 22 parents completed all three surveys (see

Table 2. Survey participation rates across the Teens and Beyond program.

	PARTICIPATION N = 160
SURVEY COMPLETION TIME POINT	N	%
Pre-program survey only	65	40.6
Post-program survey only	15	9.4
Follow-up survey only	1	0.6
Pre- and post-program survey	41	25.6
Pre- and follow-up survey	11	6.9
Post-program and follow-up surveys	5	3.1
Pre- and post-program and follow-up surveys	22	13.8

for survey participation rates) After emailing parents the follow-up survey link, the Association for Children with Disability sent a maximum of two reminder emails to participants over a four-week period.

2.4.3. Parent Interviews

During the Teens and Beyond workshops, facilitators invited parents to express their interest to participate in interviews about their experiences of Teens and Beyond. Facilitators described the purpose of the interviews was to understand the experience of the program from an end-user’s perspective. Parents were informed that interviews would be conducted by the Parenting Research Centre, an external organisation, and were invited to express their interest by providing their email address in an online form. Contact details were sent to the Parenting Research Centre project team to directly communicate with parents about booking an interview. A Parenting Research Centre project member telephoned parents to re-summarise the purpose of the interviews, confirm their interest and provide a link to a booking calendar using Doodle scheduling software (June 2021). An information statement and consent form was also emailed to parents at this stage of the process. Parent interviews were conducted using Zoom software, and each interview took approximately 30 min. Before starting the interview, the researcher summarised the information statement, reiterated the voluntary and confidential nature of participation, and obtained verbal consent from the parent. With participant consent, interviews were recorded and saved on the Parenting Research Centre secure cloud server and were subsequently transcribed by the interviewer for analysis.

2.5. Data Analysis

The survey dataset was assessed using Little’s MCAR test to determine whether missing data were missing completely at random (MCAR), that is, that data were not missing in an organized pattern. This was confirmed for datasets at each time point including pre-program, X² (df = 237) = 264.46, p = 0.123, post-program, X² (df = 40) = 38.6, p = 0.533, and at follow-up, X² (df = 74) = 84.28, p = 0.194. The expectation–maximization algorithm was subsequently used to impute missing values and create a complete dataset for repeated measures analysis using only the sample who completed either two or three surveys (49.4%, n = 79). This was done to minimise the impact of extensive data imputation for the full sample, reduce the risk of a Type 1 error from sample-wide imputation, and provide more conservative findings of significance. The subset of the data for analysis therefore excluded parents who completed a survey at only one timepoint. The dataset was subsequently screened for normality and outliers. One-way repeated measures analysis of variance (ANOVA) with pairwise comparisons were conducted to determine if there was a significant difference on outcomes across time and if so, between which of the three time points. All quantitative analyses were conducted using IBM SPSS Statistics version 25 and version 29.

Semi-structured interviews with parents and staff were transcribed verbatim and coded and analysed using QSR NVivo software Version 1.6. Thematic analysis was based on the approach of Braun and Clarke [29], where emergent themes were identified and tabulated into primary and secondary themes. Illustrative extracts for each code were drawn from the data to provide examples of the themes.

3. Results

3.1. Surveys

Repeated measures ANOVAs assessed whether any of the intended outcomes were significantly improved after participating in the Teens and Beyond program, and if so, whether any improvements were sustained six months later. Normality was assessed for each analysis, and if there was a violation of the assumption of sphericity, an adjustment was applied using the Greenhouse–Geisser correction. Post hoc pairwise comparisons with a Bonferroni correction were conducted where significant ANOVAs were found, and partial eta squared is reported to indicate the magnitude of findings. Results are reported below, and means and standard deviations are presented in

Table 3. Means (M) and standard deviations (SD) on outcome variables (N = 79) ^†.

	Pre M (SD)	Post M (SD)	Follow-Up M (SD)
Parent self-efficacy (Me as a Parent)	14.67 (2.2)	15.54 (1.8) ***	15.25 (1.1) *
Parent self-advocacy	11.18 (1.8)	12.08 (1.4) ***	11.61 (1.1) *
Perception of adolescent self-advocacy	6.59 (1.7)	7.60 (1.4) ***	6.69 (1.1)
Confidence to support teen independence	19.20 (3.8)	22.92 (3.4) ***	20.07 (2.8)
Confidence to support adolescent stages	6.79 (1.8)	7.79 (1.3) ***	7.06 (1.3)
Hopes for teen’s future	7.76 (1.8)	7.97 (1.6)	7.84 (1.4)
Sense of empowerment	3.16 (0.9)	3.97 (0.6) ***	3.49 (0.6) **

^† Inclusion criteria: minimum two surveys completed. * p < 0.05, ** p < 0.01, and *** p < 0.001, denoting a significant increase from pre-program scores.

.

Parenting self-efficacy. Significant differences were found on self-efficacy over time, F(2, 156) = 7.42, p < 0.001, with a medium magnitude of effect, η² = 0.087. Pairwise comparisons with a Bonferroni adjustment show that parent self-efficacy significantly increased from pre- to post-program (p < 0.001) and that this increase was maintained at follow-up (p < 0.05).

Parent self-advocacy. Significant improvements in parent self-advocacy were found post-program and a small significant effect was sustained at follow-up, F(2, 156) = 14.07, p < 0.001. A large partial eta squared confirmed the magnitude of this effect, η² = 0.15. A Bonferroni adjustment revealed improvements were significant from pre- to post-program (p < 0.001) and remained significantly higher between pre-program and follow-up (p < 0.05).

Adolescent self-advocacy. Significant changes were found in parent perceptions of their adolescent’s self-advocacy, F(2, 156) = 19.54, p < 0.001, with a large effect size, η² = 0.20. Significant improvements compared to pre-program were detected post-program (p < 0.001) in pairwise comparisons with a Bonferroni adjustment, but these improvements were not maintained at follow-up.

Adolescent independence support. Parent confidence to support adolescent independence increased significantly over time, F(2, 156) = 55.32, p < 0.001, with a large effect η² = 0.42; however, these improvements post-program were not significantly maintained six months later at follow-up.

Confidence to support sensitive developmental stages. Improvements in parent confidence to support their adolescent across stages of development and discuss sensitive topics were significant, F(2, 156) = 19.88, p < 0.001, and supported by a large effect size η² = 0.20. Pairwise comparisons revealed these improvements occurred post-intervention; however, they were not significant at follow-up.

Parent hopes. Parent hopes and expectations scores revealed an increase from pre- to post-program and pre-program to follow-up; however, these improvements were not significant, F(2, 156) = 0.62, p = 0.540, and had a very small effect η² = 0.008.

Parent empowerment. ANOVA revealed significant effects of the intervention on parental empowerment, F(2, 156) = 42.69, p <.001, with the intervention having a large effect on this outcome, η² = 0.354. Increases in parental empowerment remained significant at both post-program (p < 0.001) and follow-up (p < 0.001).

3.2. Parent Interviews

Positive experiences of Teens and Beyond. Parents reported several positive aspects of the program, however, the strongest theme related to the program’s facilitators and their lived experience, facilitation skills and engagement strategies, and the co-facilitation delivery model.

Table 4. Positive parent experiences of Teens and Beyond.

Primary Theme	Secondary Theme
Facilitators	Co-facilitation model
	Lived experience
	Bi-directional interaction/chat function
	Parent engagement strategies and skills
Inspirational	Motivating
	Buffers against stress
Practical	Assist future planning
	New information learned
	Resources online
Modality and delivery	Well-spaced weekly sessions
	Small group size
	Chat function; online links; immediacy of links
Validating	Validated experiences or attitudes
Peer support	Shared experiences/sense of connection
	Peer learning
Trusted source	Weblinks pre-vetted by ACD
	Facilitators with lived experience

outlines the themes and key elements of positive parent experiences.

As well as being inspirational, the program was seen to provide a buffer against stress.

“To show that there is hope, it offered inspiration to me.”

“Even if you’ve had a ghastly day, you’ve got time to defuse, regroup and come back, and then it [the workshop] would distract you because you talk about something positive, something proactive, something that will be supportive to your teenager.”

Aspects of online program delivery were seen as predominantly positive, with the online forum seen to provide immediately accessible weblinks, information and resources, a chat function, convenience, and small group size. Being able to utilize the online chat function without disrupting the flow of the presentation was also seen as a strength.

“The chat session was really good. A lot more people were able to process what they were thinking and put it down in the chat.”

Parents also described the practical information, sense of validation, peer support, and their confidence in the Association for Children with Disability’s reputation as a positive aspect of their experience with the program.

Negative experiences of Teens and Beyond. Three primary themes arose as negative program aspects, including ‘long’ session duration and the challenges connecting with other parents online. Parents also described the content-heavy nature of the workshops, with limited time to consolidate their learnings within the workshops.

Table 5. Negative parent experiences of Teens and Beyond.

Primary Theme	Secondary Theme
Fast-paced	Content heavy and less chance to connect
	Needed to follow-up on tasks
Lacked consolidation	Desire for additional session to consolidate and connect
Duration	Sessions were long

describes themes relating to negative experiences of the program.

Relevant program content. Parents viewed the content as relevant for three primary reasons: the content was generalizable across disabilities and age groups; it was useful for planning and prompting action; and it addressed clear, specific topics such as finance and mental health. However, three parents with high-need adolescents noted topics such as employment were not relevant; nonetheless, they reflected that they understood the program was geared toward varied levels of functioning. Discussion of this topic in the group was seen as an opportunity to take a break for one parent, who could “tune out for a few minutes” and then “tune back in”. The content was also considered to be applicable for teens with ‘invisible’ disabilities, including high-functioning adolescents with ASD. The workshop was also praised for introducing the topic of puberty.

Helpfulness of the program. Many parents found the directory of information, with the immediacy of website links, to be helpful and described it as being like having a “checklist”. The Association for Children with Disability’s trusted reputation was acknowledged by parents, who also noted that there is no centralised supplier of this information in Victoria, Australia.

“In my case probably the links to information and what I need to do, that was probably the most significant thing.”

“I really found it helpful, and I really enjoyed the program. I think mainly because I noticed a lot of the disability programs are really focused for younger children.”

A summary of the program’s relevance and helpfulness as perceived by parents is presented in

Table 6. Relevant and helpful program content.

Primary Theme	Secondary Theme
Generalisable	Relevant to network
	Not specific to one disability
Useful for planning	Relevant across age groups
	Triggered decisions, planning, and action
Directory of information	Pre-vetted weblinks
	Broad range of information provided
Developmental stage	Adolescent-specific information

.

Program Impact. Several impacts were discussed by parents relating to practical changes, increased confidence, knowledge about services, and a change in parent views about their adolescent’s increasing maturity.

“I was able to action some tasks, like the Tax File Number. My son is never going to be able to work as such, but he still needs a TFN to be able to access the disability support pensions, so I thought, lightbulb, yes that’s something that I’ve got to go out and action”.

“Oh my son is not young anymore, he’s not a kid anymore… Before Teens and Beyond I thought, he’s still a kid! [laughs]”.

“It did open my mind, hey my son is really growing up, it feels like he’s growing older, and really, I needed to prepare”.

These views were associated with an awareness of employment opportunities and a focus on their adolescent’s strengths rather than challenges. Changes in family roles, such as increased involvement by partners or discussions “around the dinner table”, were also described.

Facilitators and barriers to participating in Teens and Beyond. Online access to the program was most cited by parents as facilitative of their ability to attend the workshops. Families in rural areas particularly noted the value of online access, while many parents highlighted the reduced need for services, additional supervision, and/or carers. The varied session times, trusted reputation of the Association for Children with Disability, free access, and quality of the content also improved parent access and participation.

“As carers, we need as much help as we can to reduce the time around anything we need to do to help our kids.”

“You don’t have to organize respite, you don’t have to organize care or support workers coming into your home” [to attend].

Parents described a comparatively small number of barriers to online participation, such as noise at home, difficulty raising sensitive topics in an online forum, and concerns about the varying levels of disability in the group.

Several parents commented on some feasible, additional topics or implementation changes to the program that might improve parent engagement and participation. For example, it was suggested that adding a fourth session would enable time to consolidate learnings and connect with other parents, while sibling relationships and voting were proposed as additional topics.

“If they can fit it in somewhere, one of the things I feel really sad about is the impact of a disabled child on their siblings.”

Several parents also proposed a session tailored toward ‘invisible’ disabilities such as ASD and toward different levels of functioning.

4. Discussion

The aim of this study was to evaluate the effectiveness of Teens and Beyond in enhancing the confidence and capacity of parents of an adolescent with disability. A further goal was to explore parent perspectives on the usefulness, relevance, and acceptability of the program content and delivery in order to better understand the program’s implementation effectiveness. Overall, findings from both the survey and parent interviews supported the program’s implementation and its positive impact on intended outcomes for families.

The program had a significant and immediate positive impact across six of the seven targeted outcomes including self-efficacy, self-advocacy, confidence supporting adolescent self-advocacy, confidence to support increasing adolescent independence, confidence to support adolescent developmental stages, and parental empowerment. Three of these variables, i.e., self-efficacy, self-advocacy, and parental empowerment, remained significantly higher than pre-program levels at six months after completing the program; however, there was a decline in all scores at follow-up. There was no significant increase post-program or at follow-up in parent hopes and expectations about their adolescent’s future.

One of the primary purposes of the Teens and Beyond program was to improve parent confidence, which is a well-recognized correlate of parenting competence and performing parenting tasks effectively [24]. Parent confidence is also an important predictor of subsequent positive outcomes for parents and their children [25]. Parenting self-efficacy is an ideal targeted outcome in parenting interventions as it is known to be sensitive to change [26,30], and this is supported by the current findings. While immediate and sustained increases in global self-efficacy were found to occur post-program and again six months later for Teens and Beyond participants, this did not extend into sustained improvements in parent confidence across other more specific areas, such as confidence to support their adolescent’s increasing independence and their adolescent’s transition through sensitive stages of development. It is possible that these specific aspects of parent self-confidence were less amenable to sustained change resulting from the intervention. Parenting adolescents through this phase of development might be especially challenging where parents are also managing their adolescent’s disability supports. It is possible that additional challenges and burdens, increased time pressure, and greater life stressors may impede large or sustained improvements in confidence across specific aspects of adolescent development.

Self-advocacy skills were found to improve immediately after the program and were sustained six months later, suggesting Teens and Beyond successfully supported advocacy skill development for parents. Parents taking part in Teens and Beyond may be experiencing a particularly challenging stage of their child’s development and may enter the program with wide scope for improving self-advocacy. The validation parents described experiencing from program participation may also enhance their capacity to advocate for resources and services. Initial increases in self-efficacy may also have supported the development and use of strategies and skills associated with perceptions of self-advocacy.

The findings indicated significant increases in parental empowerment after program participation and at six-month follow-up. Parent empowerment is strongly connected to a parent’s sense of efficacy [31], where the parent believes they possess the ability to be the active agent of change for their child [32]. Parental empowerment is also a predictor of lower distress in parents of children with disability [33], suggesting that targeting parental empowerment in parenting programs may confer compounding benefits for parent mental health.

Parent aspirations and hopes that their adolescent with disability will one day be able to independently take part in social activities or employment did not increase after program participation in Teens and Beyond. The literature supports potential for parenting programs to enhance parent hopes in parents of adolescents with disability, indicating that positive parent expectations can foster adolescent autonomy and postschool outcomes [34]. Levels of adolescent functional ability varied widely in this sample, and it is possible that level of adolescent functional ability moderates parental hopes and expectations. Parents of adolescents with more severe disability and limited expectations about their teen’s future autonomy may be concentrating their attention on day-to-day tasks. Participants also had children and adolescents across a broad age range (from 10.5 to 19 years of age) and spanning various stages of adolescent development, possibly contributing to divergent expectations.

Parent interviews generated themes in relation to the quality and design of the program, the facilitation and program delivery model, the program content, and the online mode of delivery. The co-facilitation program delivery and lived experience of facilitators coupled with their expertise in the disability sector were core features of the Teens and Beyond program and generated strong positive parent feedback. Consistent with research, these facilitator qualities were central to the development of therapeutic alliance, which is an important contributing factor to program engagement and outcomes [35,36]. Teens and Beyond facilitators achieved alliance with participants across three sessions, reflecting their ability to overcome barriers frequently linked to online service delivery. A further contributing factor to successful implementation was the use of a co-facilitation delivery model. This approach allowed one facilitator to present the workshop while their colleague responded to parent questions in the chat feature. It also enabled both facilitators to deliver different content relevant to their nuanced lived experiences, which supports facilitators to learn from one another’s experience and knowledge [37].

Program content also emerged as a strong, positive theme and was described by parents as motivational, inspiring, and validating of their experiences as parents of an adolescent with disability. Normalising the experiences of families was one of the program’s goals and these findings support this outcome. Strengths of the program content included being actionable and practical, which was augmented by the trust that parents have in the organisation and in the quality of their information. This is congruent with the literature about the importance of an organisation’s reputation in facilitating trust and parent engagement [38,39,40].

Parents had mixed views about the online modality, though views were heavily in favour of online program delivery. Several factors played a role, with the most cited benefit being convenience. Parents described the convenience of instant connection and the elimination of travel time, the reduction or elimination of childcare or carer support, and the immediacy of weblinks. Parents also found the chat function helpful because they could add questions without interrupting the presenter or flow of the workshop. Several comments about noise, distraction, and lack of privacy in the home were made in relation to negative aspects of online delivery. The recent and growing literature on virtual program delivery corresponds with the findings of this study [13,19]; however, there may be scope for improving support for parents in setting up appropriately and effectively for online program participation. Online co-facilitation, in particular, can enhance the experience for both clients and practitioners as it allows for “switching back and forth” between facilitators providing them with a break and variety in their facilitator role, while creating interest and more engagement for participants.

4.1. Limitations

Whilst the findings were generally positive and in the anticipated direction, there are some caveats associated with the methodology and timing of the evaluation. As part of a treatment-only design, we recruited a convenience sample. However, the demographic characteristics were broadly reflective of the most common types of disabilities and genders for adolescents with disability accessing National Disability Insurance Scheme currently. Thus, the results are likely to be aligned with the characteristics of caregivers of adolescents with disability more broadly. Due to the paucity of appropriate measures and, in particular, the need for measures designed with sensitivity to the unique challenges experienced in this parent population, new items were developed for all but one outcome variable. Scales were designed to be brief, have face validity, minimise burden on the participant, and use minimally triggering language. The professional and lived experience of the intervention team was critical to achieving this; however, validated standardised scales can offer greater confidence that constructs are measured as intended. A further limitation was the non-experimental nature of the evaluation, which prevented interpretations about causality. With no control or comparison group, we were able to draw conclusions about relationships but not causation.

Third, as with most repeated measures designs, extensive missing data are a common limitation, as was the case in this evaluation. Imputed values were used to maximise the retention of cases. While data were missing completely at random, imputing values can lead to stronger assumptions about intervention effects and can therefore bias interpretation [41]. Additionally, despite good attendance in the first session, attendance rates were 24% to 62% in subsequent sessions, which meant that parents were experiencing different doses and exposure to the intervention components.

It is also important to consider the ecological context of the intervention, which took place during the COVID-19 pandemic. Ongoing lockdowns and public health restrictions heavily impacted access to disability support for families and this may have been an indirect limitation of the program evaluation. For example, reduced access to supports may have increased burden on families and moderated the longevity of the program benefits. It is also possible that some families may have experienced health concerns which further constrained their routines and access to supports.

A potential limitation raised by several parents was the duration of the sessions. As a result of moving the intervention online, some participants may have experienced ‘Zoom fatigue’. In a recent adaptation of an in-person parenting program to virtual delivery, Grafft and colleagues [23] reduced the duration of the program from 2 h to 90 min to alleviate the effects of ‘Zoom fatigue’. In the current study, it is possible that a combination of delivery mode and duration impacted parental engagement.

4.2. Implications/Future Research

The present findings may inform the development of other parenting programs developed specifically for parents of adolescents with disability. This study highlights the unique challenges and experiences of families with a teenager with disability and the barriers they face accessing the breadth of support, information, and validation they need to build and maintain parenting capacity. Three key aspects of success for the implementation of Teens and Beyond included the lived experience and knowledge of the facilitators, the iterative process of program design, and the co-facilitation delivery model. This delivery model supported parental engagement, and parents described the Association for Children with Disability’s workshops as a trusted, high-quality source of information, with the reputation of the Association for Children with Disability a key agent of success in program reach and engagement.

For families raising an adolescent with disability, the online accessibility of the program generally compensated for the challenges associated with this modality. The reduced need for respite or childcare was beneficial, as was the elimination of travelling to a program, which was particularly helpful for families in rural areas. Hybrid models of service delivery may expand program availability to a wider audience.

The qualitative component of this study supports the benefits of shared lived experience and improved knowledge of resources and supports, and the apparent value they bring to a sense of parental empowerment and confidence. Future research opportunities could explore whether break-out rooms or social media platforms can be utilized to increase social support and program engagement. Ongoing intervention opportunities as ‘booster’ sessions or regular check-ins warrant investigation as a means of sustaining longer-term outcomes at follow-up (and beyond), given the decline in scores even in those outcomes that remained significantly higher than pre-program. Additionally, there is scope to explore the impact of level of adolescent functioning and how this influences intervention efficacy. Further research could also investigate if validating parent experiences can predict self-efficacy, empowerment, and self-advocacy and whether peer-supported or peer-facilitated models of service delivery are important in capacity building. Finally, the impact of family characteristics, such as culture and socio-economic status, could be explored for their role in influencing the way families experience and navigate this important developmental period for their adolescent.

5. Conclusions

Several themes emerged in relation to the process and outcomes of the Teens and Beyond program which are congruent with the literature on the benefits of parenting programs for parents of children with disability, suggesting that these benefits can extend to parents of adolescents with disability. Overall, parents described feeling engaged with the program content and workshop delivery, with greater capacity to support their adolescent’s increasing maturity and independence. Improvements were also found across almost all outcome variables immediately after the workshop, with a few being sustained six months after completing the program. Parents’ beliefs that they were efficacious in their ability to support their teen in task-specific ways at home, in the community, and in planning and preparing for their future improved. To date, parents of adolescents with disability have had limited options to participate in programs that specifically address their adolescent’s growing independence. The current findings support the immediate and longer-term benefits of targeted parenting interventions for this cohort.