In 2020, the four early intervention parenting programs, that help improve outcomes for people with FASD, their families and caregivers, that were highlighted over the last three years, have been combined into this one post, in order to make room for exciting and promising intervention news. Those programs are outlined below, including the information on a new app for caregivers based on the first one highlighted.
Sharing this information is not an endorsement. Every attempt has been made to share only information from reputable sources. Links are provided for you to conduct your own research.
The program information for Families Moving Forward, Family Model Check Up and Triple P Stepping Stones comes from a Report: Prenatal Alcohol Use and FASD: Diagnosis, Assessment and New Directions in Research and Multimodal Treatment, 2011, 64-107, Chapter 4: An Innovative Look at Early Intervention for Children Affected by Prenatal Alcohol Exposure by Heather Carmichael Olson and Rachel A. Montague. The authors note these programs are:
Scientifically validated parenting interventions that seem especially promising for FASD intervention from a neurodevelopmental viewpoint.
These scientifically validated interventions teach positive parenting skills, and methods for dealing with behavior that can be challenging for parents and caregivers.
Families Moving Forward
Offered in Seattle, Washington (USA), with options for other agencies to offer this program, so not necessarily limited to Seattle or even the USA.
The information is taken directly from the above-noted report (pages 19 & 20).
The Families Moving Forward (FMF) Program is a positive parenting intervention, developed by Olson and colleagues. The FMF intervention model was designed for families raising children with FASD who also have clinically concerning behaviour.
The FMF model is a behavioural consultation intervention that combines a positive behaviour support approach with motivational interviewing and other scientifically validated treatment techniques. The FMF intervention is specialized for families raising children (ages 4 – 12) with FASD, though it is likely useful for children with other neurodevelopmental disabilities.
The FMF intervention is delivered individually to families by trained clinicians who have access to supervision or consultation. There is a manual for the FMF intervention, but it is flexible enough to respond to the needs of the diverse population of children with FASD and their families.
The efficacy of FMF services has been tested as home-based counselling delivered from a university setting and later by a community agency, with promising results. Delivery in clinic settings has also been tried and is quite feasible. The FMF Program has been designed to be affordable and is now being disseminated to community agencies that have a special commitment to serving children with FASD.
In the FMF intervention model, caregivers are offered support and education, sustained behavioural consultation that includes coaching on skills, targeted school and provider consultation, advocacy assistance, and connection to community linkages. There is a strong emphasis on emotional support for caregivers who must adjust to a disability that is often unrecognized by social systems, teachers and even health care providers.
Other ‘optional’ treatment elements can be added, such as finding respite care or learning how to explain an FASD diagnosis to a child.
Receiving FMF services does not preclude other services, and the FMF intervention model actually emphasizes links to other community resources.
The FMF Program is a caregiver-focused intervention, designed to be used with families experiencing high caregiving stress.
Data on the FMF Program were gathered with the intervention offered in bi-weekly visits, usually 90 minutes, over 9 to 11 months. Shorter duration with more frequent visits is feasible. There is a highly collaborative and equal relationship between parent and professional (FMF Specialist).
The aim of Families Moving Forward is to help parents:
- reframe and understand their child’s neurological impairment and ability to process emotions, changing attitudes in a more positive, realistic direction.
- learn skills for how to come up with and use accommodations, such as modifications to the home or classroom.
- learn how to set up practical behaviour plans to reduce self-selected behaviour problems.
These plans rely less on setting up consequences for misbehaviour rather more on parents thinking about the triggers and circumstances surrounding their children’s behaviour, and how to provide accommodations so the challenging behaviour decreases and the child acts in a more functional way. The idea is for parents to learn how to create behaviour plans, so they have strategies to use in the future when new behaviours crop up. Parents receive a customized workbook and do regular home activities to practice new skills and attitudes.
The study compared two groups of families (1) FMF services; and (2) the community standard of care. Families were very diverse in terms of ethnic background, social class, income level, and type of family structure (adoptive, birth, foster; grandparents, single parents, two-parent families).
Immediately after treatment, relative to controls, findings showed the FMF group reported significantly greater family needs met, a greater sense of parenting efficacy, more parental self-care and decreased disruptive behaviour. Parents reported high satisfaction with treatment. Treatment compliance was excellent, with 96% of families completing the basic intervention in this first efficacy trial.
For more information, see the Families Moving Forward website.
2019 Update: Families Moving Forward Connect
Developing a Mobile Health Intervention for Families Raising Children with FASD.
At the 8th International Conference on FASD Christie Petrenko, an assistant professor and research associate at the University of Rochester’s Mt. Hope Family Center, and Cristiano Tapparello, a research assistant professor in the University’s Department of Electrical and Computer Engineering, presented information about the first mobile phone app they created for caregivers of children with FASD based on the Families Moving Forward Together program.
For more information, you can view their slideshow presentation from the conference.
2020 UPDATE: Focus Group Test Results In
In the past two-and-a-half years, the duo has designed, coded, assembled and written the content for their mobile health intervention app, FMF Connect. The researchers took mock-ups of the app to seven focus groups across the country, and then followed up with two beta tests.
The FMF Connect app allows users to easily access five distinct components:
- Learning Modules: training for caregivers
- Library: fact sheets and resource lists with medically sound advice
- Family Forum: a space for users to share advice and ideas
- Notebook: a place to save personalized content
- Dashboard: includes a customizable avatar that tracks progress through the Learning Modules and charts child behaviour.
Now the qualitative findings from the focus groups, recently published in JMIR mHealth and uHealth, are in. Generally, the focus groups members—made up exclusively of caregivers of children with FASD— liked what they saw.
“Responses were generally enthusiastic,” says Petrenko. The caregivers liked that the information was easily accessible and organized, they could connect with others, and were able to share information. They also offered some constructive feedback, in particular related to interface design, and privacy concerns and dynamics within the Family Forum.
While the first two years have been spent focusing on the app development, a feasibility trial with 75 families is next. In fact, recruiting for the trial just began this month. By the end of this year, or early 2021, the researchers are planning a randomized controlled trial with 120 families. The team is looking into options to sustain the project financially once their grant ends in May 2022, at which point the app is expected to be widely available.
2022 Update: Parents and caregivers are still being recruited for testing.
For more information and to find out how to get involved, visit: App for Caregivers of Children with FASD or the FMF Connect website.
Other Intervention / Education Programs:
Based in B.C. (Canada), the website states they do bring the program to other communities. Offered by Whitecrow Village FASD Society, a non-profit, charitable organization, states:
FASD affects all facets of society and reaches across all social and professional domains. It transcends cultural and economic diversities. Without proper support and understanding, persons with FASD are at risk for many secondary disabilities.
Whitecrow Village is for and about community. Our programs offer a model for a way of life and a way of being with one another. Wherever and whenever we come together, we create a place where regardless of age, colour, gender, social class, disability or ability, sexual preference, religious persuasion, and all other things that have been used to divide and create disharmony among peoples throughout history each person has equal value and belonging. Each voice is heard; as each completes our circle.
Our core Live-In FASD Education (L.I.F.E.) Sessions – affectionately known as “camps” – present a microcosm of the “real” world, where we live, work, and play together; and where we learn how to understand and appreciate each other; acknowledging our limitations as well as our gifts.
At a Whitecrow Village L.I.F.E. Session, persons from all aspects of the community come together in an atmosphere of respectful relationship. Parents, professionals, children, and staff work to develop a common understanding and to move toward a shared vision of society. Together, they form a cohesive culture in which each unique person finds belonging, and value, and is genuinely celebrated for who they are and for the diverse perspectives and abilities they bring to the community. Within this community, each person can find the necessary safety to begin a healing journey. L.I.F.E. Sessions demonstrate that, within a strong and healthy community, the strengths and gifts of people with FASD can be their most notable qualities.
The program can also be tailored for each community.
Stepping Stones Triple P Program
Although not specific to FASD, it is for children with developmental disabilities. It is not the basic Triple P Program. I do not know anyone who has taken this program, so if you have, let us know what you thought.
The information below comes directly from the report: Prenatal Alcohol Use and FASD: Diagnosis, Assessment and New Directions in Research and Multimodal Treatment.
The Stepping Stones Triple P Program is a positive parenting intervention, designed generally for young children with developmental disabilities and their families. The age range tested so far is from 2 to 7 years (but has been extended up to children aged 9 who may be lower functioning).
This intervention is based on principles of behavioural family intervention and parent management training. Parents learn to respond in a planned manner to their child’s behaviour and set up activities to minimize chances for disruptive behaviour.
The Stepping Stones Triple P intervention was adapted from the evidence-based Triple P Positive Parenting Program. Adaptations included making content and materials more sensitive to families of children with disabilities, and covering additional issues relevant to this type of parenting (e.g., adjusting to having a child with a disability).
Another adaptation was adding to the curriculum information about causes for behaviour problems beyond those seen among children who are typically developing, such as communication problems or disruptive efforts by the child to stop a disliked activity. Behaviour change protocols for common problems associated with developmental disabilities (such as self-injurious behaviour, or eating non-food substances) were included.
Clinicians receive extensive specialized training and regular supervision. The Stepping Stones Triple P Program is delivered in two-hour-long sessions. The 10-session curriculum includes examining causes of child behaviour problems, and providing information on strategies for developing positive relationships; encouraging desirable behaviour; teaching new skills and behaviours; managing misbehaviour.
Caregivers receive a family workbook and watch videotaped demonstrations of positive parenting skills. Parents self-select goals and strategies to practice in the clinic and several home observation sessions.
In the original efficacy study, families with additional needs were offered additional sessions beyond the basic program to cover either Partner Support (marital communication and parenting teamwork) and/or Coping Skills (mood management and coping skills).
In a randomized control trial, an intervention group was compared with a waiting list control. Participants were preschoolers (up to age 7 years) with behaviour problems and various developmental disabilities (none specifically identified as affected by prenatal alcohol exposure, or with FASD). When families had additional needs, the intervention included additional sessions offering training on partner support and/or coping skills for families with additional needs. Results were promising.
The Stepping Stones Triple P intervention was associated with reduced child behaviour problems as reported by mothers and independent observers, improved maternal and paternal parenting style, and decreased maternal stress. Some effects were maintained at a 6-month follow-up. Families were well satisfied with the treatment.
Further testing compared the use of the Stepping Stones Triple P Program with and without the enhancements of parent coping skills, relative to waiting list controls. Participants were again families raising preschoolers (up to age 5 years) with developmental disabilities and behaviour problems, who appeared to have milder adaptive behaviour deficits than did participants in the earlier efficacy trial. Both the basic and enhanced interventions were equally effective, so there was no evidence that adding adjunctive treatment was superior to the standard behavioural training.
After treatment, there were lower levels of observed negative child behaviour, a reduction in the number of caregiving settings where children showed problem behaviour, and improved parenting competence. No changes were seen in parent mood or couples adjustment. Families were again satisfied with the treatment. Gains were maintained at a one-year follow-up. The Stepping Stones Triple P Program has also very recently been tested with families raising children aged 2 to 9 years with autism spectrum disorders, with significant improvements in parent-reported child behaviour and parenting styles that were maintained over a 6-month follow-up.
I did take the Triple P Parenting program when the maiden was young. Unfortunately, they did not offer this particular program at the time. This one may be the best one in terms of accessibility because if it’s not offered in your country, there is an online version. And while I’ve always found being in a group is the best, online is the next best thing.
Click here to check out their website to find a location near you.
Family Check Up
The information provided below is taken directly from the Report: Prenatal Alcohol Use and FASD: Diagnosis, Assessment and New Directions in Research and Multimodal Treatment. You can find the report by clicking here.
The Family Check-Up is a positive parenting intervention that focuses on preventing problem behaviour and negative interaction styles in families at high psychosocial risk.
This intervention model aims to support parents in a family-centred and ‘ecologically focused’ manner. Like the FMF model (outlined above), the Family Check-Up also uses motivational interviewing and strengthens parents’ use of positive behaviour support strategies.
This model is delivered by specially trained parent consultants and is linked to a variable amount of additional parenting support services customized for the family.
The model was designed to be embedded into existing service systems, such as public school settings, and to be delivered at four transition time points in development.
This model has so far been tested in the very early years, at the toddlerhood and preschool timepoints. There are promising results showing improvements in caregiving skills and decreased child behaviour problems.
The neurodevelopmental viewpoint suggests that the Family Check-Up model would likely not be intensive enough for most families raising children affected by prenatal alcohol exposure, even in the early years, unless sufficient follow-up parenting support sessions were provided.
This type of follow-up appears to be possible in an extended version of the Family Check-Up model. This model would have to be adapted to offer specific information about FASD, work on acceptance of the task of raising a child with a disability and slower developmental progress, advocacy, and other topics important to families raising children with neurodevelopmental problems.
Secondary data analysis would be useful to see if the Family Check-Up model holds promise for this clinical population. This analysis could identify children affected by prenatal alcohol exposure, and their families, who receive the Family Check-Up Model and then examine their outcomes compared to the larger group.
According to their website The Family Check Up is a brief, strengths-based intervention model for children ages 2 through 17. It promotes positive child outcomes by improving parenting and family management practices. The Family Check-Up has more than 30 years of evidence demonstrating strong intervention effects. The Family Check-Up is for any parent or any provider working with parents. The model has been used successfully in diverse service settings, including community mental health agencies, publicly funded health centers, public schools, hospitals, university clinics, and Native American tribal communities. The program operates in 4 states in the USA and in several locations.
Parents and Children Together (PACT)
Developed by Chasnoff and colleagues, is a 12-week family intervention that works with children ages 6 to 12 years old and their parents or caregivers to improve self-regulation and executive function. PACT builds on techniques learned from treating traumatic brain injury and sensory processing disorders. The research has found that the intervention improves executive functioning and emotional problem-solving in children with FAS and ARND.
(Wells, A. M., et al., American Journal of Occupational Therapy, Vol. 66, No. 1, 2012).
If you have a unique program in your corner of the world, let us know in the comments below!
Check back tomorrow for some news on updates with other interventions.