Any chapter leader in the Hands & Voices network can speak to the value of parent-to-parent support. As parents involved in the organization, we have both received and given that support. We know the “aha” moment when we connected with another parent’s story, learned something that we could alter immediately in our child’s life that would improve access or relationships, and seen firsthand the trajectory of an empowered parent and family rise above the typical barriers facing parents raising a deaf or hard of hearing child. While testimonials go a long way toward painting a picture of “impact”, we wanted to sit down with educational researcher Courtney Malloy to learn more about how we might begin to show the value of the work that we do, and ensure that we stay on track with the changing needs of parents and kids. Where can we begin to develop credible data sources in this age of “show me the numbers?”
Malloy comes from an educational background with her Ph.D. focused on research and methods, with an emphasis on educational psychology. When she finished her doctorate, she began to look for a career that offered strong connections with front line people in the field who were struggling to answer questions within their service areas in the hopes that she could maximize the relevance and immediate impact of her research. Malloy joined Vital Research and found the connection she wanted; she works closely with her clients to help them make changes in the lives of their constituents. Her practical day-to-day work with professionals (and now parents) includes a five-year project with pn2 (pepnet 2). The Office of Special Education Programs (OSEP) recently charged pn2 with the task of improving diverse and complex systems while using data to drive best practices in the area of secondary transition for deaf/hard of hearing students, their families, and the professionals who work with them.
Some professionals think parent-to-parent support can be offered by connecting parents within an intervention practice--picture connecting a parent with another parent who happens to have the next appointment. We know that an unprepared parent can’t necessarily support another beyond sharing their individual story. In the community at large, parents might receive comments like “ask me anything you like,” or “this is what you should do-- it worked for me!” neither of which meet needs for information sharing and capacity building.
In a recent review of literature of parent-to parent support, Henderson, Johnson and Moodie stated that parents report receiving inadequate, outdated, biased, and incomplete information from their child’s specialists. The authors suggest that parent empowerment (confidence and competence) can be most effectively developed through problem solving, engagement and decision-making within relationships with other parents who have been in the trenches raising a child who is deaf/hard of hearing. Our Guide By Your Side (GBYS) training is consistent with the approach suggested by Henderson, Johnson, and Moodie. The training takes potential Guides through gaining an intimate knowledge of many different parent stories, typical questions, knowledge of the systems serving our kids, research and resources beyond our own communities, and mentoring to equip Guides to approach a new parent in a way that respects knowledge and beliefs and builds from there.
In looking at the information shared about the H&V approach, mission, and values, Malloy notes that she was immediately struck by the implied theory of change that influences the work of the organization. Our logic at H&V dictates that empowered, connected parent leaders (Parent Guides) can support other families to become equally empowered, and connected, giving them greater access to knowledge and networks; thus, families can better support children through the milestones from identification to finding quality early intervention and support services. If all goes according to plan, these children will eventually graduate with strong self-advocacy skills and good transition plans. How can that positive change be quantified, how can impact be measured? According to Malloy, the key to understanding our impact is to take a look at all the various steps in our implied theory of change. For example, does the support offered through H&V Guides provide the greater connections and access to information we seek? Do parents access the intervention and support services they learn about to influence their children’s lives?
Malloy notes that one way to capture impact is through thoughtfully designed, regularly given surveys to capture data along the critical points when support is needed (e.g., identification, early intervention, transitions, etc.). Such surveys can be used to show the “state of the state” for parents and how that may change gradually over time as well as how impactful the H&V network is on the knowledge, attitudes, and behaviors of parents. A standard series of satisfaction questions, needs assessment and impact modules could be deployed to reach the 35,000 chapter members in the United States and beyond at regular intervals. Also, imagine what picture that longitudinal data would be able to paint for purposes of advocacy on a national, state, and local level. Furthermore, rating satisfaction is important and must be ongoing. Just as important is getting at the idea of “What did you change in your child’s story because you connected with an H&V Parent Guide?”
During Malloy’s time with pn2, she has learned how challenging it can be to secure credible and robust data about deaf and hard of hearing individuals, simply because of low incidence. Yet, data are critically important to understand: 1) what kinds of services are needed and 2) which are most beneficial. Regularly administered surveys at H&V could be designed in such a way to uncover stories about the positive changes in parent behavior as a result of our network as well as needs that might have been unmet. Perhaps new parents would share that they become aware of multiple services through their Parent Guides and they now consult more than one source of information and seek second opinions before making choices. Perhaps parents would share that they had access (or not) to meaningful encounters with deaf/hard of hearing adults who can inform and inspire their own child’s story. Perhaps experienced parents would share what they wish they had known before critical periods from identification to entering preschool to seeking accommodations in high school. Obtaining systematic data is key to truly understanding what our parents need and how they benefit from support.
Malloy shared another method for “solving intractable problems” that might be valuable for H&V leaders to consider. Within any community, there are some individuals with extremely positive outcomes given difficult circumstances, while others continue to struggle. Studying those successful “outliers” using the framework of Positive Deviance (See: www.positivedeviance.org) can teach us what behaviors these successful parents might have employed to mitigate challenges and foster success. “Motivation is difficult to replicate in others,” says Malloy, “but behavior is something tangible that Parent Guides can explain, disseminate, and encourage. Maybe highly effective parents reach out for help more often, attend more training, and navigate systems in specific ways. If our Parent Guides seem to be models of empowerment and have mitigated the challenges in the system, studying their behavior may lead to a theory of action that can support all families. We know there are some markers to success in the world of our children, too: what other markers can we identify that set the state for future success?
Finally, Malloy encourages us to embrace the idea that “I realized I wasn’t alone,” a common refrain from parents meeting their first Parent Guide, as a significant outcome. There is an impact on that parent, in what he or she feels and thinks that should be measured, acknowledged, and appreciated. As Hands & Voices reaches the 20th anniversary of a revolutionary idea, we can use data to better articulate the value of the network. “The place where families find support” in daily life—and increasingly, where professionals find support as well, can only benefit from using data to shape the network into an even more intentional place of support.
Reference: Henderson, R., Johnson, A., Moodie, S. Parent-to-Parent Support for Parents with Children who are Deaf or Hard of Hearing: A Conceptual Framework. Henderson, Johnson, Moodie. American Journal of Audiology, 1-12. 2014 Dec;23(4):437-48. doi: 10.1044/2014_AJA-14-0029
Editor’s note: Courtney Malloy is the Director of Research at Vital Research, founded in 1982. www.vitalresearch.com. She is also Adjunct Professor of Education at the University of Southern California where she teaches research and evaluation methods to educational practitioners.
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