An Australian online training and support program for caregivers of children and youth with Fetal Alcohol Spectrum Disorder: Families linking with families

ABSTRACT

Background:

Australia has limited supports to help families where Fetal Alcohol Spectrum Disorder (FASD) impacts children and young people. National Organisation for Fetal Alcohol Spectrum Disorder Australia (NOFASD), in conjunction with the University of Otago, New Zealand, piloted and established a 7-week online program to assist caregivers to develop strategies and supports to help their families live well in a disabling society.

Method:

The online program, Families Linking with Families (FLWF), was delivered to 88 caregivers. They participated in the weekly 90-minute online program of talks, activities, and interactive conversations. A brief evaluation was undertaken.

Results:

Participants reported high levels of satisfaction with the content and helpfulness of FLWF. FLWF helped caregivers increase their knowledge of, and skills in, parenting children with FASD, and equipped caregivers to nurture positive peer-to-peer relationships.

Conclusions:

Specialist FASD caregiver education and support programs are beneficial for caregivers who care for children and youth with FASD. Further research through a randomised control trial could establish the efficacy of the program.

KEYWORDS:

• FASD
• caregivers
• children
• online support
• parent coaches
• lived experience

Parents and caregivers of children and young people with Fetal Alcohol Spectrum Disorder (FASD) experience lifelong challenges, not only in caring for their disabled children but in dealing with the multiple systems that they interact with to obtain resources and supports for their families (Olson et al., 2009; Petrenko et al., 2014a; Sanders & Buck, 2010). Challenges with systems include accessing: full FASD assessments, appropriate diagnoses, post-diagnosis support, bespoke education or interventions, respite breaks, dealing with stigma and obtaining recognition of FASD as a disability for the purposes of receiving ongoing funding (Healthcare Improvement Scotland, 2019; Olson et al., 2009; Petrenko et al., 2014b; Sanders & Buck, 2010). Challenges with systems remain, with research showing that living with FASD for family members and individuals disadvantages them because they experience stigma, exclusion, intolerance from others, mental health stress and a whole range of other negative impacts (Olson et al., 2009; Popova et al., 2021; Streissguth et al., 1996; Wilson et al., 2023). The lack of funding means that FASD continues to be poorly recognised, and woefully misunderstood. The consequences for families can be significant and caregivers report stress, isolation, and being disapproved of as they advocate for their children (Gibbs, 2021; Healthcare Improvement Scotland, 2019; Mohamed et al., 2020; Whitehurst, 2012; Wilson et al., 2023). Parents and caregivers experience high levels of exhaustion, grief, poor health and wellbeing, and “burnout” (Gibbs, 2021; Sanders & Buck, 2010; Whitehurst, 2012; Wilson et al., 2023). Caregivers consistently report frustration about the inadequacies of having to “fight” systems to get resources for their children, and the difficulties of being viewed as in “need” of parenting programs, instead of being given the resources they need to support their children (Healthcare Improvement Scotland, 2019; Wilson et al., 2023). Too many parenting programs are non-FASD informed and are based on social and cognitive reasoning and learning processes that fail to take account of the significant executive function impairment and fixed “brain injury” basis of FASD as a disability.

National Organisation for Fetal Alcohol Spectrum Disorder Australia (NOFASD) was set up in 1999 by a caregiver/parent who recognised the lack of specialised FASD supports for families where FASD is part of a family’s journey. Since 1999, NOFASD has been committed to developing specialised FASD training and supports for caregivers and has reached out to others who share a passion and expertise in providing specialised FASD training. NOFASD has partnered with experts, professionals, researchers, and those with lived experience to provide a range of workshops, webinars, telephone, email and face-to-face support, alongside online programs, and continued advocacy. NOFASD specifically partnered with Professor Gibbs of the University of Otago, to pilot the Getting On With It (GOWI) program in 2020 (Gibbs et al., 2020a). Gibbs had previously developed the Dunedin parent support training (Gibbs, 2019), which was a 7-week face-to-face offering and GOWI became the digital/online version program. Qualitative research was undertaken by NOFASD and Professor Gibbs, and the GOWI pilot was considered to be a successful first bespoke digital FASD-caregiving program for Australia (Gibbs et al., 2020a). NOFASD then obtained funding to run more online programs as a more integrated part of NOFASD’s work during 2021, 2022, and 2023, and thus Families Linking with Families (FLWF) was born. The broad objectives of FLWF are to help caregivers gain more understanding of FASD specific to their children and, or youth, and to help them develop positive strategies to support their children’s success, alongside getting support for themselves through peer-to-peer mentoring and collaboration.

Previous research, and online reporting of training opportunities for caregivers, are beginning to show benefits. For example, parent training workshops in various delivery formats have demonstrated parent satisfaction and knowledge increases (Kable et al., 2012). Olson and colleagues (Bertrand, 2009), and Petrenko and colleagues have piloted and introduced a large program of both face-to-face caregiver training and online supports, including use of a mobile support application (app) with positive feedback and results. Improvements in parenting skills have included gains in caregiver FASD knowledge and attitudes, caregiving practices, caregiver efficacy, and caregiver support (Petrenko et al., 2017). For the mobile support app, caregivers have noted that using the app enables easy access to helpful information, and they value video material alongside helpful suggestions and FASD strategy ideas (Petrenko et al., 2021). The Coaching Families program in Alberta and Calgary has also shown improved parenting and self-care skills and reduced stress from sustained caregiver support over weeks and months (Leenaars et al., 2012).

Many countries provide caregiver training and support as a matter of course and there are both face-to-face and online support options. Good online examples are the FASD caregiver success initiatives by Jeff Noble (FASD Success, n.d.), and the Brain First Parenting and Resilience Room training by Eileen Devine (Devine, n.d.), but both these have financial cost implications for caregivers. In the United Kingdom (UK), there have been feasibility-based pilots also paving the way for more initiatives, and similar to FLWF, the UK Salford Parents and carers Education Course for Improvements in FASD outcomes In Children (SPECIFiC) training started as a face-to-face service and has recently gone digital, receiving positive initial feedback of the benefits of FASD-focused training for parents (Price et al., 2023). Getting funding to offer routine supports for caregivers is a major issue, as pilots or feasibility studies often attract only small amounts of fixed-term funding, and rolling out successful pilots nationwide is rarely achieved. In Australia, apart from FLWF, there have been a few free online and face-to-face grassroots support initiatives, and some recent commercial support opportunities (rffada, n.d.; JumpStart Psychology, n.d.). But FLWF is the first initiative that covers all of Australia and provides a sustained, digital and free to caregivers training and support program for caregivers by caregivers.

The rest of this article will discuss the underpinning frameworks and main concepts of the FLWF program, its core objectives, session content overview, and the main features of the delivery of 11 programs over the last 2.5 years. We also report on our brief evaluation and caregivers’ comments as to some of the benefits and limitations of participating in the FLWF program. We finish with key learnings, limitations, and suggested developments.

Program development of FLWF, theoretical frameworks, and important concepts (see Table 1)

The Dunedin parent support training was developed by the first author (Gibbs, 2019), who observed that caregivers of children with FASD were only offered generic parenting programs that did not focus on disability or appropriate adaptations for brain-domain challenges or neuro-divergent conditions. Gibbs is a caregiver, a qualified social worker, researcher, and a disability advocate, and she understood that while caregivers are the strongest advocates for their children, they still need supports for themselves and a good knowledge of the strategies that help children and youth with FASD to flourish. Gibbs also listened to local families in her region who wanted more training and support. After the Dunedin program, the first digital pilot in Australia occurred in 2020, and then the FLWF roll out occurred during 2021–2023. In 2022, Professor Gibbs, and NOFASD, shared the materials back to New Zealand and Fetal Acohol Spectrum Disorder Care Action Network (FASD-CAN) New Zealand has now developed a bicultural offering, being delivered online and face-to-face (Hunter, 2023).

Table 1. Key developments of FLWF, frameworks and concepts.

Key developments	Theoretical frameworks	Key messages	Key concepts
2017 Literature review, discussion with lived experience experts, first face-to-face 7-week course in NZ. Qualitative interviews undertaken. 2019 First digital pilot of Getting on with it (GOWI), online Zoom 7 weeks. Evaluation undertaken and funding applied for larger roll out. 2021–2023. Funding received to run 8–10 programs for now renamed FLWF. Includes parent coach training to deliver future programs. 2022 NZ launches a bicultural version Life with FASD, using both face-to-face and online delivery.	Disability rights Brain-based/neuro-development Ecosystems Social model of disability Neuro-diversity paradigm	FASD is a lifelong disability like other disabilities. Ableism, stigma, and exclusion are unacceptable. Those living with FASD or their families have equal rights to participate and flourish as others do. Barriers to inclusion and participation are to be challenged. Caregivers are lived experience experts – FASD training should be facilitated by caregivers for caregivers.	Knowledge-sharing Empowerment Peer support Advocacy Strengths-based Primary and secondary issues Gifts and challenges Coaching and mentoring Flourishing Pay it forward/Capacity building Systems-navigation

The FLWF program draws on a range of evidence-based studies, expert consensus, and lived experience contributions. The evidence-base has been noted in previous publications and includes material from North America, the UK and more recently Australia (Badry, 2013; Badry & Hickey, 2018; Bertrand, 2009; Chamberlain et al., 2017; Calgary Fetal Alcohol Network, 2016; Evensen, 1994; Goodley & Runswick-Cole, 2016; Kapasi & Brown, 2017; Leenaars et al., 2012; Malbin, 2009; Olson et al., 2009; Peadon et al., 2009; Pei et al., 2016; Petrenko et al., 2014a, 2014b; Petrenko & Alto, 2017; Reid et al., 2015; The Child and Youth Working Group n.d.). To that end, FLWF is a “living” program in that each year the materials are updated and adapted to suit the delivery mode, geographical location, latest publications, and good practice guides.

The basic frameworks utilised for FLWF are noted by Gibbs et al., (2019; 2020a, 2020b), as being brain-based, disability rights focused, and eco-systems attuned. Brain-based or neuro-developmental frameworks lead us to understand that, in the case of FASD, the brain has been impacted across a range of brain domains, which leads to functional and primary impairments in many areas, which can include executive functioning, language and communication, emotional regulation and memory capability (Malbin, 2009; Mattson et al., 2011; FASD Coalition, n.d.). It is important that caregivers become knowledgeable in understanding both the primary brain-domain impacts of FASD, alongside the secondary issues that their children will face; many of which can lead to much discrimination and hardship for families. In the FLWF program, by using a brain-based and neuro-developmental approach, caregivers are enabled to see the benefits of getting a thorough and accurate diagnosis, and how to use strategies to support accommodations across the full range of domains assessed.

In drawing on the work of disability rights’ researchers and activists (Chapman & Carel, 2022; Degener, 2016; Goodley & Runswick-Cole, 2016), FLWF uses the social model of disability and a neuro-diversity paradigm. These theories place FASD as a social issue recognising that those living with FASD face significant barriers to full and equitable participation, yet they have disability rights, which should enable them to voice their opinions, have accommodations provided, and have access to the same services as other people living in society, whether disabled or non-disabled. These theories also value neuro-disabilities as part of the neuro-diversity paradigm, and emphasise the intrinsic value of living with difference or dis/abilities. Chapman and Carel (2022), Goodley and Runswick-Cole (2016), and Walker (2013) argue that neuro-diversity perspectives enable those who are autistic, or have FASD or other neuro-divergent conditions, to flourish, to contribute as lived experience experts and to teach others about living well in a society that often discriminates against them. The experts are those with the “label,” not those giving the label. The influence of this body of work on FLWF ensures the following key messages are promoted for the duration of the 7-week program:

• Children with FASD are born with a lifelong disability like any other disability.

• Neither they, nor their families, should be denied services, or excluded, or stigmatised for having impairments; ableism is unacceptable.

• They should have rights to participate and be fully “human” like anyone else, that is they should have the same human rights as anyone else.

• They also should be accepted as being neuro-divergent and different in some areas, the “same but different,” both Dis and Abled or Dis/Abled as critical disability researchers would term it.

• This framework ensures work towards challenging the barriers that Dis/Abled people with FASD face, as well as advocating for inclusion and participation, and promoting the voice of those with FASD across all policy and practice initiatives.

Olson et al. (2009) and other system-focused researchers connect the brain-based framework to eco-systems frameworks and this enables FASD to be viewed within family systems and person-in-environment contexts, and to understand the impacts and challenges of all systems interacting with someone who has FASD, alongside their families (Badry & Hickey, 2018; Petrenko et al., 2014a, 2014b). This framework encourages the awareness and use of systems to help challenge, as well as build resilience and strengths for the person and their teams of helpers. Petrenko et al. (2014a, 2014b), and Petrenko and Alto’s (2017) research shows the need for comprehensive, coordinated and tailor-made services and supports across multiple systems, throughout a child or young person’s lifespan. Petrenko and colleagues specifically developed an ecosystems framework for FASD and argue that it is useful in relation to the prevention of secondary disabilities, such as school exclusion or involvement with mental health systems. Other systemic approaches include Communities of Practice, WrapAround, Keyworker, and Case Management (Gibbs et al., 2020b). There is a focus on changing systems and ensuring team-around-the-family approaches are implemented with clear roles, boundaries, lines of accountability and transparency.

Core concepts used in FLWF

The disability rights’ frameworks encourage a range of positive core concepts to be utilised to ensure that those with FASD and their families are viewed as experts, and able to flourish and participate in all aspects of living well individually and collectively. FLWF incorporates concepts like empowerment, advocacy, coaching and mentoring, peer-to-peer collaboration, and lived experience, all of which presume caregivers know their children the best and already use FASD-informed knowledge, skills, and strategies to help their children (Badry & Hickey, 2018; Leenaars et al., 2012; Petrenko et al., 2014a, 2014b; Tremblay et al., 2021).

FLWF is a program by caregivers and parents, for caregivers and parents. Peer support and lived experience are foundational concepts because we believe that caregivers empathise and “get FASD” – caregivers go through similar experiences, similar daily challenges, similar struggles with systems and can help each other by sharing strategies and building resilience.

Caregiver peer support is based on accepting lived experience as expertise worth listening to and acknowledging. Watson and Meddings (2019) mention peer support as being about people connecting with each other who have walked a similar path. We view caregiver peer support as the act of meeting, walking alongside, and supporting, in a range of ways, another parent or caregiver or group of caregivers, who have a similar lived experience. For FLWF, it’s about being there for each other, and not about the expert and non-expert binary. It is simply about peers supporting each other. FLWF flips the idea of expertise on its head, it is dis/ruptive (Goodley & Runswick-Cole, 2016; Watson & Meddings, 2019), because it challenges taken for granted notions of who holds the knowledge of what works in parenting children and young people with FASD.

Hence, FLWF prioritises the lived experience expertise and attempts to build and scaffold the increasing strengths of caregivers, as well as deliberately using strategies during the weekly sessions to encourage caregivers to share their “successes” and “failures” – better known as “learning moments,” to benefit all participants in a particular program. While the program provides both training and support, and certainly ensures a baseline education about FASD (“FASD 101” in effect), its strength is ensuring participants are valued for their day-to-day ideas and for helping one another.

NOFASD has been ideally suited not only to recruit caregiver participants, but because it is a “caregiver backbone” organisation it has been able to provide competent experienced caregiver facilitators to run the FLWF programs. These facilitators, or parent coaches, as we call them, undertake the full 7-week program first as participants, and they then volunteer to become co-facilitators of an upcoming program if they so wish. They will have been mentored and supported by Gibbs, NOFASD employees and senior members of the FLWF team, so that they can feel confident to run a new program (all materials provided; and NOFASD administrative and digital technology support alongside).

Another important aspect, with mixed results, has been to try and “pay it forward,” by encouraging participants, with the help of a parent coach or NOFASD representative, to carry on meeting and supporting each other post the 7-week initial program. Several of the 11 groups did organise follow-up support sessions via Zoom, Facebook and WhatsApp initiatives. One group that combines participants from several past groups continues to meet monthly online with some logistical support from NOFASD. Pay it forward has allowed NOFASD and Gibbs to train coaches, support caregivers weekly and motivate caregivers to use their skills to help others. In a field where caregivers often receive rejecting and stigmatising messages FLWF attempts to counter the negative messages, and offer hopeful messages back to caregivers through the empowering processes established. Additionally, in a climate where funded interventions are difficult to come by, the framework and approach adopted by NOFASD and Gibbs, has ensured good quality training in an economically efficient way. Without the approach we have used it is unlikely that caregivers would have been able to access online group-based peer-oriented support without significant cost to themselves.

Program aims and content overview (see Table 2)

The main objective of FLWF is to help caregivers who are caring for children with FASD, or suspected FASD, to develop greater resilience and positive strategies to help their families live well, in spite of disabling systems, or lack of broader supports for their families.

Table 2. FLWF objectives and seven-session overview.

Objectives	Session topic	Materials and methods
1. An increased knowledge of FASD, and its impacts and challenges across the lifespan. 2. Have been equipped in knowledge of successful strategies and interventions that can be used to help families where FASD is an issue. 3. Have developed helpful and successful strategies and approaches to apply to their own unique family environment, as well as to the systems in their environment, such as health, welfare, education, and justice. 4. Have fostered peer-support relationships with others who share the lived experience of FASD.	1. Introduction and FASD basics. 2. FASD across the lifespan and FASD lived experience. 3. Parental Survival and Managing Stress. 4. Interventions and Strategies. that work for Families where FASD is an issue. Part 1. 5. Interventions and Strategies. that work for Families where FASD is an issue. Part 2. 6. Dealing with Systems and Getting on with Professionals. 7. Accessing Supports and Building your own Family Resilience and Strengths	Pre-Zoom phone interview completed Zoom meetings every week for 7 weeks, 90-minute duration Using – PowerPoint presentations Ticksheets/information sheets Short talks, videos, podcasts Take home tasks Interactive participant discussions Lived experience stories Post program evaluation undertaken

Objectives of FLWF are to have participants/caregivers:

• Achieve an increased knowledge of FASD, and its impacts and challenges across the lifespan.

• Be better equipped with knowledge of successful strategies and interventions that can be used to help families specifically for FASD.

• Become aware of helpful and successful strategies and approaches to apply to their own unique family environment, as well as, to the systems in their environment, such as education, health, child welfare, and justice.

• Fostering peer-support relationships with others who share the lived experience of FASD.

FLWL uses 90 minutes over the Zoom platform covering a range of topics for 7 weeks. These include: What is FASD? Understanding the impact of prenatal alcohol exposure on the brain; FASD across the lifespan and FASD Lived Experience; Caregiver self-care, parental survival, managing stress, building family strengths and resilience; Interventions and strategies that work for individuals and families where FASD is an issue; Dealing with systems of education, health, welfare and justice, and accessing supports and getting on with professionals. Each session uses mini-talks with PowerPoint slides, use of audio-visual content, case studies, interactive discussion of session topic, question and answer time, and a fun, easy take-home task, which is then reflected upon at the start of each new session. After each session reference materials and handouts are sent to participants as well as the PowerPoint notes or additional information resulting from participants’ requests or questions in that session. We add additional topics for each specific new program at the request and interests of the particular caregivers attending.

Method

Recruitment of caregivers

NOFASD employed a multi-faceted approach to recruitment of participants. Approximately 6 to 8 weeks prior to the commencement of each program an article about the upcoming support group was featured in NOFASD’s newsletter, this reaches around 2000 subscribers each month. In addition, social media posts about the support group were featured on each of NOFASD’s social media platforms (Facebook, LinkedIn, X (formerly Twitter), and Instagram). Furthermore, where relevant to the nature of their enquiry, callers to NOFASD’s national telephone Helpline service were alerted to the existence of the FLWF program. Additionally, the official foster care organisations in each Australian state were provided with information about upcoming support groups and encouraged to share this with their stakeholders (foster carers) by way of their newsletter and/or social media. In addition, as the FLWF program progressed there was evidence of perceived value from past participants as “word of mouth” referrals were made.

NOFASD allocated a staff member to act as the project manager for the overall delivery of the FLWF program and this role encompassed the provision of detailed information to potential participants, answering their individual queries about the suitability of the program for their participation as well as liaison with parent coach facilitators and co-facilitators to ensure the smooth delivery of all logistical elements of the program. During the delivery of the 7-week program, the project manager was also responsible for emailing all participants each week with details of the following week’s topic and reference materials and ensuring that any queries raised in the previous session were followed up and addressed as appropriate.

Prior to the commencement of each support group, the project manager contacted each confirmed participant by phone for a one-on-one conversation to gather details about their family situation, issues of particular or immediate concern and their overall motivations for wishing to join the support group. While issues of particular concern varied among the participants according to the age/s of their child/children and their current symptoms/behaviours, there were two clear factors motivating the desire to participate in a support group. Overwhelmingly, participants noted that they were eager to connect with others who were sharing the same experience of parenting a young person with either diagnosed or suspected FASD and to be able to share their stories and experiences without fear of being “judged” as they were so often experiencing in their daily life. In addition to seeking supportive connections, the majority of participants indicated that they were also keen to increase their knowledge about FASD and to learn more about potential strategies and interventions that could assist in achieving better outcomes for their child or young person.

Participants

Participants encompassed regional areas as well as metropolitan areas, as the online delivery mode using the Zoom platform enabled participation without the need for complex travel arrangements or time away from home. The 88 caregivers who participated in the 11 groups so far have included: 9 men and 79 women, the majority of whom were non-Indigenous (although a sizeable number were caring for Indigenous children). In total, the caregivers were responsible for 131 children – 82 of whom had received a formal diagnosis of FASD. The remaining 49 children were suspected of having FASD and caregivers were in various stages of seeking, or awaiting, an assessment for diagnosis purposes. The majority of caregivers were foster parents, there were also a small number of kinship carers and six biological parents.

Post program brief evaluation

At the conclusion of each program a post-program online questionnaire was distributed to all participants, encouraging them to complete the survey, which was able to be completed anonymously on the Survey Monkey platform. Over the 11 support groups, 79 caregivers completed the survey representing a response rate of 89.75%. The survey was designed to capture basic quantitative and qualitative data and both categories revealed a very high level of satisfaction from participants with the content, delivery mode and outcomes of their participation in the support group program. Caregivers were asked to rate if they understood their child better post program; if they found the content up to date and relevant; if they had increased their FASD knowledge and skills; if they found linking with other families with lived experience helpful; if they felt their confidence to deal with aspects of FASD had increased; if they felt their personal contributions were valued, and if they had a better understanding of how to support their child as a result of participating in the program. They were also asked to provide written comments as to the value of the training and what could be improved.

Results

The following quantitative results have been achieved:

• 97.5% believed that the personal contributions by participants of their lived experience with FASD was valued.

• 96.4% of participants agreed that as result of their participation they would be more confident in explaining FASD and advocating for more support for this disability.

• 96.4% of participants agreed that they had been able to have a say on the issues that were important to them.

• 95% of participants agreed that they had increased their motivation and confidence in dealing with aspects of FASD, due to their participation.

• 95% of participants agreed that they had developed supportive peer relationships.

• 93.75% of participants agreed that they had increased their knowledge and developed their skills in relation to FASD.

• 92.25% of participants agreed that as a result of their participation they had a better understanding of how to support their child.

While these are brief, the results indicated that participants so far had enjoyed participating in FLWF, had found the sessions educative and beneficial, and that they had been using their increased knowledge of FASD in their daily lives.

The qualitative comments were collected via three questions, which allowed participants to provide answers in their own words. Pleasingly, the qualitative feedback indicated that the two key motivators driving the decision to participate in a support group – i.e., the desire to connect with others sharing the same experience and a desire to increase knowledge about FASD and relevant support strategies – were successfully achieved via the format and delivery of the support group program. A representative selection of responses is included here.

Q: The most valuable part of the training was … 

• - “Being in a group of people who understand and the facilitator having lived experience. Access to information and resources in a structured way. Positive but realistic approach.”

• - “Hearing from experts on the topic and also sharing the lived experiences of others in the group.”

• - “Hearing that I am not alone and that what I deal with is common among children with FASD.”

• - “Putting all the pieces together to help give me a much fuller understanding of the disability, and also hearing from other group members in relation to their personal experiences and challenges.”

• - “Linking in with other carers and also developing my own understanding through the information and clips shown.”

Q: The training could be improved by … 

• - “I can’t think of any major improvements – it is very comprehensive and delivered in a manner that I found easy to follow and engage with.”

• - “Making it a few more weeks longer and spreading it out in case there is more discussion needed.”

• - “The government and its cohorts providing more funding so support groups such as this can continue to help others.”

Q: Is there anything further you would like to add?

• - “Nothing, other than my thanks and appreciation for allowing me to be included in the group, and for the facilitators to have given so much of their time.”

• - “Would love to see this run more often to help other families understand their children. I would also love to attend another slot of training to keep up to date with studies.”

• - “It is a great thing to have Zoom as an option to do this course from anywhere.

• - The topics were well planned and covered an excellent range of subjects and was purposeful. I think 7 weeks was a good amount too.”

• - “I felt valued, heard and appreciated, that’s a rare thing for me these days, so it was nice to have a positive thing to look forward to each week. Thank you.”

• - “I found the training very, very helpful. There is so little help for families and just meeting other parents going through the same challenges was wonderful. The facilitators were brilliant.”

Again, while these results are brief, they provided initial insights into how the training in the FLWF program is experienced and how the training might improve. As the program develops a pre- and post-questionnaire will prove more valuable to link to program objectives (Table 2), and over time more specific instruments of effectiveness, e.g., the Strengths and Difficulties Questionnaire or other psychometric instruments might be a valuable indicator to measure caregiver stress changes over the duration of the program and beyond (Price et al., 2023).

Discussion

The FLWF support group program provided a much needed and highly valued service for parents and carers of children and young people with FASD, and the format and duration of the program was confirmed as appropriate. The flexibility of using Zoom allowed participants to choose their location of participation; at times this included car parks and venues for after school activities. Occasionally, children waved to the program facilitators when their parents accessed the Zoom platform from home. Parents and caregivers could temporarily leave and come back into the session if need be. Hence, flexibility of the support offered, as well as different date choices and time choices, are an asset of the FLWF program. Alongside flexibility, the format of the program is adaptable to changing or updating materials regularly, as well as, being able to be used in a range of different contexts.

The provision of accurate, current information about FASD delivered in a confidential environment with others sharing similar experiences provided a forum that facilitated the ease of sharing of personal experiences. The online support group sessions were not recorded, and the confidentiality of information shared was stressed to all participants – both in the written information provided prior to commencement of the program and verbally by the facilitators. Accordingly, both the setting and the approach by the facilitators fostered an environment where participants could quickly build trust in the other members of the group and share personal experiences without fear of being misunderstood or judged. The sense of safety created through these approaches, which are run by caregivers for caregivers is clearly viewed positively by participants who appreciate that the program facilitators “get” what they are going through and can empathise as well as support them to find their own solutions or supports to problematic issues they are facing.

NOFASD’s FLWF program values the expertise of parents and carers who take on the role of the parent coaches/facilitators, and also the expertise of the participating parents and carers who, through having the opportunity to share their own experiences in a non-judgemental setting, begin to recognise the value of their own lived experience and accordingly gain in confidence and resilience – which are two key factors that will assist them in a role caring for an individual with a complex disability. The lived experience model is an accepted model of operation in mental health (Watson & Meddings, 2019), and is increasing in FASD circles. From a disability rights’ perspective (Goodley & Runswick-Cole, 2016), the move to value the voice of those most impacted by the disability is vital to ensuring best outcomes (Tremblay et al., 2021; Whitehurst, 2012). To ensure a future where lived experience is valued, and to continue to offer flexible choices for program attendance it will be necessary to recruit and train additional parent coaches.

Crucial also to the success of FLWF is the dedicated role of the project manager (NOFASD staff member) in coordinating the program and sessions. This role has provided high-level administrative support of all logistical elements of the program, and a consistent contact point for all facilitators and participants. This has allowed facilitators (who were also busy in their own caring roles) to focus on delivery of the program content on the day of each session, knowing that the project manager would follow up on any queries raised and provide the ongoing, consistent communication channel with group members over the duration of the 7-week program. To enable the delivery of future online digital programs it will be important to obtain funding that provides for the role of the project manager to provide this over-arching coordination of the support group program.

Participant feedback from all 11 support groups conducted during 2021, 2022, and 2023 indicated a desire to continue connecting with fellow group members following the formal 7-week program. Several models to facilitate this have been explored by various groups (these include closed, private Facebook groups and WhatsApp groups, which have offered the possibility of immediate feedback if participants post a message seeking feedback from other groups members). However, the most effective ongoing group has been formed by offering the opportunity to participants of past support groups conducted in an evening timeslot to join together in monthly group meetings on the Zoom platform. This enlarged group has settled on a regular date (the first Monday evening of each month) for their online meetings with the hope that as many participants will be able to attend as possible. NOFASD is providing the logistical support to distribute the Zoom invitations and “coordinate” the meetings, which though informal in terms of no set “agenda”, still requires a supported framework. This builds on our “pay it forward” philosophy mentioned earlier and in previous publications (Gibbs et al., 2020a), whereby we provide the means for caregivers to give and receive support beyond the formal program.

Limitations and suggestions for future development and research

One limitation of the current FLWF program is the lack of specific Aboriginal and Torres Strait Islander material, which might assist caregivers who look after children and young people who are from the Aboriginal and Torres Strait Islander communities. While the FLWF content does feature material and conversations from Indigenous perspectives and discussion of strategies that might work for Indigenous families we have not yet had an Indigenous-specific group or Indigenous facilitator. This is something that future offerings hope to change and some groundwork has already occurred to run an Indigenous-only support group. One of the issues for Aboriginal and Torres Strait Islander communities is digital poverty, in other words, not having easy, reliable and cheap access to Wi-Fi to enable equitable participation. Also, the digital format might simply not be the best or most culturally safe approach for Aboriginal parents and caregivers to connect with each other.

FLWF as a new initiative and with its current evaluation model clearly has limitations in terms of program efficacy evidence and demonstration of positive outcomes. These could be addressed through efforts to undertake a randomised control trial where matched controls; for example, caregivers participating in the FLWF program compared to caregivers on a wait list who do not participate in a FLWF program when they want to (Price et al., 2023) . There are, of course, some ethical issues with making people who actively volunteer for interventions wait, but this approach would be the accepted gold standard approach to demonstrate more of the benefits and disadvantages listed by our caregivers over the last 4 years of program delivery.

Additionally, a limitation of the current set up of FLWF is that the data we have collected to date, and have used in this article is mainly descriptive, with little in-depth analysis, albeit from 88 participants over the delivery of 11 programs. In 2018 and 2020, we did undertake more in-depth analysis of semi-structured qualitative interviews and we used this material to improve the delivery of the program (Gibbs, 2019; Gibbs et al., 2020a). What is needed now is a more comprehensive research project to produce a greater range of data. The money we have received to date as an NGO has been targeted towards developing good practice and this brief evaluation model. Our initiative would therefore need a large research grant of the kind now achieved by the SPECIFiC initiative in the UK, which has recently obtained £400,000 to undertake a wait list RCT of their new FASD caregiver training program (Rumsby, 2022). It is hoped in New Zealand and Australia there might be an option to apply for a similar amount of funding to allow more thorough testing of the effectiveness of FLWF. NOFASD is currently running five or six FLWF programs per year; amounting to 50-60 caregivers/parents, so the numbers now justify a more robust evaluation.

Conclusion

FLWF offers a compact 7-week training and support program for caregivers of children and young people with Fetal Alcohol Spectrum Disorder. The empowerment and peer support orientations and recognition of the expertise of caregivers, alongside the mentoring and training of parent coaches have proved particularly successful. Feedback from 88 participants has overwhelmingly been positive in terms of increased knowledge, confidence, and peer support. NOFASD intends to continue offering ongoing programs digitally to caregivers as an efficient, flexible, and mostly accessible option for caregivers throughout Australia.

Disclosure statement

No potential conflict of interest was reported by the author(s).