Family Pals: An Exploration of Parents' Experiences

Family Pals was created by the Brandeis University Genetic Counseling Program to provide students the opportunity to meet with families who have a child with a disability. First-year genetic counseling students are placed with a family during their spring semester in order to more fully appreciate the life experiences of families who have a child with a disability. The students meet with their assigned families in their homes or at mutually agreed upon family/child-centered activities. Since the Family Pals Program inception 11 years ago, the Genetic Counseling Program has actively sought feedback from students, but the perspective of the participating families has never been examined. The purpose of this study was to explore the experiences of parents who have participated in the Brandeis University Family Pals Program. Any parent who had participated in Family Pals at least once was eligible to participate. A total of 10 Family Pals parents took part in the study, which included a qualitative, semi-structured phone interview lasting approximately 15-30 minutes. Participants discussed their motivation in being a part of the Family Pals Program, and provided a program evaluation. Our findings show that parents are motivated to participate in Family Pals in order to “give back” to other similar families. This motivation is facilitated by 1) providing a first-hand experience for genetic counseling students 2) educating students about their child’s specific condition and about disability in general and 3) demonstrating the possibility of normalcy even with a disabled child. Suggestions for improvement of Family Pals included allowing the parents to provide feedback about the students, and enabling the students in turn to provide feedback to the parents. Our findings may be of interest to other genetic counseling program directors interested in incorporating similar experiences into student curriculum.