National Academy of Medicine

Unique Opportunities and Challenges in Implementing Family-Focused Interventions for Children with Developmental Disorders

By Rebecca M. Jones, Ruth Perou, Andy Shih
July 10, 2014 | Discussion Paper

The Institute of Medicine (IOM) and National Research Council (NRC) established the Forum on Promoting Children’s Cognitive, Affective, and Behavioral Health to engage leaders from academia, government, professional organizations, and philanthropy in dialogue about how to build a stronger research and practice base around the development and implementation of programs, practices, and policies to foster children’s health and well-being across the country. In April 2014, the forum hosted a workshop on strategies for scaling tested and effective family-focused preventive interventions. The workshop included discussion of successes and challenges to expanding the reach of family-focused interventions—such as the Positive Parenting Program (Triple P), the Incredible Years Programs, and the Nurse-Family Partnership—that have been shown to be effective for promoting children’s social, emotional, and behavioral well-being as well as for reducing caregiver stress and enhancing positive relationships between children and their parents (Menting et al., 2013; Olds et al., 2010; Perrin et al., 2014; Sanders et al., 2014).

Less explored in the workshop was that family-focused interventions have a unique beneficial opportunity for promoting health in children with developmental disorders. Early intervention, including efforts that involve family participation, is considered crucial for altering disorder trajectories and enhancing developmental outcomes (Warren et al., 2011) as well as preventing negative outcomes, in certain developmental disorders like Attention Deficit Hyperactivity Disorder (ADHD) (Halperin et al., 2012). However, family-focused interventions that target children with developmental disorders also present with distinctive implementation challenges. This paper discusses unique implementation opportunities and challenges for family-focused interventions in maximizing outcomes in children with developmental disorders, with a focus on Autism Spectrum Disorder (ASD).

ASD represents a particularly challenging developmental disability due to variability in behavioral symptom presentation and the possible presence of a range of co-occurring conditions, such as language delays or learning disabilities. Given the complexity of ASD, the lifelong nature of the disability, and the challenges of functioning in everyday settings, effective ASD interventions must include parent or caregiver involvement (Lord and McGee, 2001) to augment and reinforce the intervention the child is receiving. Although parent-implemented programs that focus on impairments of ASD are increasingly being developed and tested (Oono et al., 2013), programs that train parents in general positive parenting skills and child-directed interactions are available resources worth considering.

Opportunities

Clinicians and researchers have suggested (Zand et al., 2013) and empirically tested (Whittingham et al., 2009) that parental resilience in families with a child with ASD may be bolstered by programs such as Stepping Stones Triple P (Sanders et al., 2003), Incredible Years (Webster-Stratton and Reid, 2010), and Parent-Child Interaction Therapy (PCIT) (Eyberg et al., 2001). There is considerable efficacy for these programs in reducing problem behaviors in children with ADHD or Oppositional Defiant Disorder (ODD) (Van der Oord et al., 2008; Young and Amarasinghe, 2010). These programs also have extensive evidence-based data in increasing caregiver confidence (McIntyre, 2008; Plant and Sanders, 2007), reducing parental conflict (Sofronoff et al., 2011), and decreasing stress (Whittingham et al., 2009). These beneficial caregiver effects are important, for as caregivers have a greater sense of control and confidence, in the case of a family with ASD, they may in turn be more effective in implementing the disorder-specific interventions, such as in the Early Start Denver Model (ESDM) or Applied Behavior Analysis (ABA) (Lovaas, 1987; Rogers et al., 2012). In addition to increasing evidence on some comprehensive treatment models for ASD, specific, evidence-based practices can also provide important tools to help plan and implement intervention in school, community, and home settings (Salvado-Salvado et al., 2012; Wong et al., 2013). More research is needed in how parents, in particular, can effectively use these strategies.

Evidence-based practice has shown that a non-specialist can execute Stepping Stones – Triple P and other broad parenting programs. However, while typically ASD-specific interventions require a trained clinical professional, recent analyses suggest that a paraprofessional, rather than a highly trained clinician, can also work directly with a child and parents to both implement and effect change in children with ASD (Oono et al., 2013; Reichow et al., 2013). These findings are critical for children with ASD as well as other developmental disorders that require disorder-specific interventions. Additionally, given the rapid increases in diagnoses of developmental disorders such as ASD and ADHD, there is an increasing shortage of professionals who can train parents in interventions. Paraprofessionals and web-based tools that can teach parents broaden the scope of who can access family-focused interventions. Despite the importance of family involvement in their child’s interventions, it is well documented that parents’ implementation abilities vary (Meadan et al., 2009) in part from the burden of stress placed on the caregiver when having a child with ASD (Karst and Van Hecke, 2012).

Challenges

Implementation challenges, which are inherent to scaling any evidence-based practice from the lab to real life, are magnified in families with children with developmental disorders. For instance, evidence suggests that having a child with developmental delay may increase the risk of dropout in parent-training interventions (Bagner and Graziano, 2013). Research underlying the risk of dropout is unclear; whether this risk is independent of other factors such as lower socioeconomic status, which is known to increase dropout, or higher levels of stress is unknown. Parents with a child with special needs may have greater concerns about their ability to parent their child compared with parents with a typically developing child (Giallo et al., 2013; Kuhn and Carter, 2006). In turn, it is not surprising that families may doubt their skills to implement behavioral interventions correctly, leading to frustration and dropout. Support systems that provide caregivers with regular feedback are critical. Recent research (Nefdt et al., 2010) suggests that web-based tools (e.g., Autism NavigatorTM or Enhancing Interactions) (Kobak et al., 2011) and easy-to-follow manuals (Bearss et al., 2013) may provide families with the necessary flexible support to increase retention rates.

An underlying reality in implementing family-focused interventions in children with developmental disabilities is the stigma associated with having a child with special needs – specifically surrounding a family’s concern about others knowing of their child’s condition. After diagnosis, families begin a coping process of having a child with a disability, and many families, even after receiving a diagnosis and action plan for care, are reluctant to tell other
family members or friends—crucial components of a support network. Such caution creates an additional barrier to successfully implementing parent-training programs (Dempster et al., 2013). Families with a child with a developmental disability may also feel isolated after their child receives a diagnosis (Mueller et al., 2012). In cases of early identification, families may be less willing to address a child’s needs when they were not the ones to initiate concerns about developmental progress. Lastly, stigma exists within a cultural context (Kang-Yi et al., 2013). Therefore, while family-focused treatments in general must acknowledge family beliefs and coping strategies to be successful, they are particularly acute for cases in which the child has a developmental disorder.

Future Directions

Currently, there is no one treatment for ASD. Clinicians offer differing advice as to what is the best intervention and, in conjunction with false vaccine theories, many parents of children with ASD are skeptical or even distrustful of clinical professionals. Families typically must navigate decisions regarding medications, potentially enhancing wariness of clinicians (Coletti et al., 2012). Determining the best practices to reduce this distrust will be critical for the success of family-focused interventions designed for children with developmental disorders.

An important factor for successful caregiver intervention is generalization, which is how easily the intervention is adapted across settings (Webster-Stratton and Hammond, 1997). Parents may receive specialized training in a primary care or school setting, but then implementing the intervention in the home presents additional obstacles that are exaggerated in a child with developmental disabilities (Kaiser et al., 2000). Often children with developmental disabilities have greater difficulty making transitions across settings, which makes it harder for a parent to follow an intervention plan. Therefore, additional flexibility within the program as well as the skills taught to parents is necessary.

In the past few years, attention has focused on the use of family-focused interventions to augment school-based and clinical treatments that address gaps in developmental trajectories for children with developmental disorders. As discussed in this paper, implementation of family-focused interventions in these children presents unique challenges as well as opportunities to enhance interventions and existing treatments. As researchers, clinicians, and educators evaluate how to broaden the effectiveness of family-focused interventions in their respective settings, it will be necessary to consider these distinctions for children with special needs.

 


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DOI

https://doi.org/10.31478/201407c

Suggested Citation

Jones, R. M., R. Perou, and A. Shih. 2014. Unique Opportunities and Challenges in Implementing Family-Focused Interventions for Children with Developmental Disorders. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. doi: 10.31478/201407c

Disclaimer

The views expressed in this discussion paper are those of the authors and not necessarily of the authors’ organizations or of the Institute of Medicine or National Research Council. The paper is intended to help inform and stimulate discussion. It has not been subjected to the review procedures of the Institute of Medicine and is not a report of the Institute of Medicine or of the National Research Council.


Note

Disclaimer: The views expressed in this paper are those of the authors and not necessarily of the authors’ organizations, the National Academy of Medicine (NAM), or the National Academies of Sciences, Engineering, and Medicine (the National Academies). The paper is intended to help inform and stimulate discussion. It is not a report of the NAM or the National Academies. Copyright by the National Academy of Sciences. All rights reserved.