Genetic Counseling Program

Untitled Document

Coping Mechanisms in Fathers of Children with Mucopolysaccharidoses  By Julie D. Jesiolowski

Capstone Project Committee: Nancy Callanan, MS, CGC (UNCG), Chair; Barbara Wedehase, MSW, CGC (National MPS Society); Amy Fisher, MS, CGC (Shire); and Scott Richter, PhD (UNCG), Statistical Consultant

No studies to date have explored coping mechanisms in fathers of children with muccopolysaccharidoses (MPS). The goal of this study was to use the Coping Health Inventory for Parents (CHIP) survey to assess coping styles in these men. Fathers who are members of the National MPS Society were invited to participate in an online survey in November of 2011. A total of eighty-four fathers completed the survey. Using statistical analysis, respondents scored highest on coping subscale II from the CHIP survey. This subscale is defined as maintaining social support, self-esteem, and psychological stability. Descriptive statistics suggests that fathers also rely heavily on their spouse for support, as well as investing themselves in their children. It appears that having a stable family unit is crucial for positive coping. The results also suggest a lack of support from other fathers of children with MPS. Common themes that emerged from the qualitative responses included having an optimistic outlook on life and living in the moment. Overall, fathers appear to be coping by preserving their personal well-being and relying on social support. This study should provide guidance for health care providers, genetic counselors, and support persons working with these families.

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