Aurélie Brown
Parent to Parent USA

If you are reading PULSE, there is no question that we have a common goal. That goal, broadly, is to “improve the health of women, children, youth, and families, including those with special health care needs.”

It is a lofty goal and one that requires a multi-pronged approach. Health has many facets. The one area that tends to be overlooked is the emotional side of caregiving.

Parents who are raising a child with disabilities, with an ongoing medical condition, or with other special needs often feel overwhelmed, helpless, and alone. They have lots of questions. Professionals can give them some answers; however, unless these providers are parents of a child who have special needs, do they truly understand what raising a child with a disability is like?

A Documented Pattern to the Four Stages of Adapting 
How do parents progress from the shock, denial, fear, and anxiety that follows a diagnosis, to a sense of hope for the future? The emotional adaptation to having a child with a disability varies from parent to parent—even from day-to-day. Regardless of how each parent adapts to their child’s diagnosis, they will progress through a well-documented pattern: “surviving,” “searching,” “settling in,” and “separating.”

The progression from stage to stage may not be linear. For example, during a major life transition, a parent may revisit a prior stage. Parents find that the joys and challenges that come with parenting are not what they had imagined for their family. They are on a different journey. However, they discover that they do have company. They build connections with and receive support from other parents who immediately understand their situation because they have “been there” themselves.

This is the core of what Parent to Parent programs do. They maintain a roster of volunteer support parents that are available for one-to-one matches with referred parents. Support parents are trained to listen and guide others out of the “surviving” stage and toward the “searching” and “settling in” stage. In doing so, they often discover the give and take process. Support works both ways. Often the parent who receives support becomes the giver in what has been referred to as the “figure-8” of Parent to Parent support.

Improving Outcomes through Evidence-Based Practices
Research was published in the late 1990s on the efficacy of parent-to-parent matching that follows a specific model of training, matching, and follow-up evaluation. A large quantitative study analyzed four major dependent variables: 

• Perceived coping efficacy
• Perceived levels of empowerment 
• Attitudes of acceptance about one’s circumstances and family
• Perceived progress in meeting the major need that parents expressed when they first requested to participate in the study.

 The study findings suggested that the Parent to Parent support model was a valuable form of assistance that the formal service system is not typically able to meet. Overall, 89 percent of parents who participated in Parent to Parent programs rated them as helpful. They also reported boosts not only in their sense of being effective parents, but also in their positive attitudes about their children and families.

“We had learned and benefited so much from [our support parent] that we wanted to share those same gifts with other parents. We were in a stable place in our own lives, despite our busy schedules, and knew that we had a lot to offer.”

– Catherine and W.C.

Parent to Parent Support as a Pathway to Family Leadership
Parents who are “settling in” usually have come to a certain level of comfort about their situation and have developed a network of other parents and professionals. They may decide to look for training to become a volunteer support parent.

Support parents enjoy the rewarding experience of working with other parents and caregivers. As they start “separating,” they may ask “what more can I do?” and be ready to share their own “lived experience” at a broader, systemic level to improve the way services are provided. With access to additional educational opportunities, they will become more effective advocates.  

In other words: parents who are in need today will be the consortium of strong leaders of tomorrow!

The Magic in the Match
How do we work together to leverage emotional support for caregivers to reach our goal of healthy parents, children, and communities?

Parent to Parent USA has formed an alliance of all programs in the country that demonstrate a commitment to implementing its endorsed practices. Parent to Parent programs have experience in recruiting and engaging families from all walks of life and throughout the lifespan.

In your work, as you meet caregivers who need an ally refer them to the Parent to Parent program in your area. Rely on Parent to Parent’s ability to connect with parents and provide them with support and resources in their community. Follow parents as they progress from relief to empowerment to advocacy, and then you will build your pipeline of family leaders.

Currently, Parent to Parent programs operate in 38 states. If you do not have a Parent to Parent program in your area, and you believe that one is needed, get in touch with us! In the spirit of peer support, our members stand ready to deliver technical assistance to get you started. Let’s work together to create more opportunities to engage families and communities nationwide.

References

• Miller, N. B. (1995). Nobody’s perfect: Living and growing with children who have special needs. Baltimore, MD: Paul H. Brookes Pub. Co.
• Singer, G., Marquis, J., Powers, L., Blanchard, L., DiVenere, N., Santelli, B., Ainbinder, J. & Sharp, M. (1999). Journal of Early Intervention, 22, 3, 217-229.
• Santelli, B., Poyadue, F. S., & Young, J. L. (2001). The parent to parent handbook: Connecting families of children with special needs. Baltimore, MD: Paul H. Brookes Pub. Co.