Biological, Behavioral, and Ethical Considerations of Prader-Willi Syndrome: A Primer for Behavior Analysts

Kennedy, Deirdre A.; Marten, Halle; O'Sullivan, Colette; Catrone, Rocco

doi:10.1007/s40617-021-00618-z

Cited by 4 publications

(1 citation statement)

References 35 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Although behavioral interventions can be effective at ameliorating the interfering behaviors that are associated with PWS, anecdotal reports indicate that this is not an intervention type that is commonly used for this population (Bedard, et al., 2021; Kennedy, et al., 2022). Also, due to the rare nature of PWS, many behavior analysts do not have knowledge of the syndrome or they are uninformed on the most effective ways to tailor behavioral interventions to meet the unique needs of individuals with PWS; however, there is currently no existing literature from which information can be drawn about the experiences of individuals with PWS with behavioral services.…”

Section: Introductionmentioning

confidence: 99%

Behavioral services for individuals with Prader–Willi Syndrome: An initial examination of experiences, needs, and wants of caregivers

Bedard,

Griffith,

Strittman

et al. 2023

Behavioral Interventions

View full text Add to dashboard Cite

Prader–Willi Syndrome (PWS) is a rare neurogenetic disorder that presents with a variety of behaviors that could be considered challenging by caregivers, including excessive food consumption and volatile tantrums. Although these behavior challenges can be dangerous and interfere with successful daily living, previous research suggests that caregivers have trouble accessing effective interventions. Twenty‐seven caregivers of individuals with PWS completed a survey to assess their needs and wants for services addressing behavioral challenges related to PWS. The survey was classified into four sections: prevalence of behavioral concerns, current access or barriers to accessing behavioral supports, familiarity with applied behavior analysis (ABA), and specific needs when accessing behavioral services. Data were analyzed using descriptive statistics. Although caregivers reported struggling with behaviors, such as tantrums, repetitive behaviors, and rigidity, many identified barriers to accessing treatment, including difficulty in finding services or practitioners familiar with PWS. Applied behavior analysis shows potential for addressing many of the behavioral challenges associated with PWS reported by caregivers. As caregivers of PWS continue to advocate for ABA‐based therapy for the individuals they support, practitioners need to take into account the needs and wants of PWS caregivers and specific behavioral needs of individuals with PWS.

show abstract

Section: Introductionmentioning

confidence: 99%

Behavioral services for individuals with Prader–Willi Syndrome: An initial examination of experiences, needs, and wants of caregivers

Bedard,

Griffith,

Strittman

et al. 2023

Behavioral Interventions

View full text Add to dashboard Cite

show abstract

Scaling Compassion and Applications in ABA

Werntz,

Zube,

Hahs

2023

Behav Analysis Practice

View full text Add to dashboard Cite

Evaluating the Impact of PWS Smart-Start: A Behavior Analytic Caregiver Training Program for Prader-Willi Syndrome

Bedard,

Griffith,

Ulm

et al. 2023

Journal of Positive Behavior Interventions

View full text Add to dashboard Cite

PWS Smart-Start is a behavioral caregiver training program developed specifically for caregivers of children with Prader-Willi syndrome (PWS) aged 3 to 14. The purpose of the current study was to evaluate the acceptability and preliminary efficacy of the program. Thirty-four caregivers of children with PWS received the PWS Smart-Start training using online live video-coaching across a 10-week period. The impact of the training on a variety of variables including caregiver and child behavior, caregiver stress and burnout, and family functioning were evaluated using a quasi-experimental pretest posttest design. Results indicated statistically significant decreases across child behavior challenges and parental stress and burnout following the training. Statistically significant improvements were also seen in parenting practices, the quality of the parent–child relationship, and family quality of life. Results of social validity measures indicated caregiver satisfaction with the program. These preliminary results indicate that the PWS Smart-Start program has the potential to not only support children with PWS through behavioral challenges but also reduce caregiver stress and burnout and improve a variety of aspects of family life. Future research is needed to replicate and further validate these results and to extend the exploration of other behavior analytic interventions for this population.

show abstract

Biological, Behavioral, and Ethical Considerations of Prader-Willi Syndrome: A Primer for Behavior Analysts

Cited by 4 publications

References 35 publications

Behavioral services for individuals with Prader–Willi Syndrome: An initial examination of experiences, needs, and wants of caregivers

Behavioral services for individuals with Prader–Willi Syndrome: An initial examination of experiences, needs, and wants of caregivers

Scaling Compassion and Applications in ABA

Evaluating the Impact of PWS Smart-Start: A Behavior Analytic Caregiver Training Program for Prader-Willi Syndrome

Contact Info

Product

Resources

About