Abstract

Background: Some families adapt well and even thrive while others deteriorate. In particular, parents of young children with Down syndrome have greater difficulties to adapt to the unexpected birth of their child. Therefore, early family intervention to help them establish new family balance is needed. Objectives: The purpose of this study was twofold: (1) to evaluate the feasibility of the Web & Phone-based Family Intervention, based on the Resiliency Model of Family stress, Adjustment, and Adaptation and Calgary Family Intervention Model, for parents of young children with Down syndrome, and (2) to assess the potential of the family intervention for improving parental and family adaptation. Methods: One group pre and post mixed-methods were utilized. Parents of young children who were less than 3 years old participated in the study. They were allowed to navigate a website developed specifically for young children with Down syndrome including up-to-date information regarding etiology of Down syndrome, medical treatment, nurturing, formal/informal family resources and participate in phone interviews once a week for 6 weeks. Parents completed demographic and family functioning surveys before and after the intervention. Results: Eight parents enrolled and completed this ongoing study. More than 70% of parents perceived web and phone-based intervention to be reliable and helpful. Seventy-five percent of parents were willing to encourage other parents to participate in this family intervention. Parents reported improved results on nine out of thirteen family functioning sub-categories. Qualitative data showed that parents perceived the intervention as meaningful. Conclusion: The early family intervention utilizing website navigation and phone interviews is feasible for helping parents understand the life of their child with Down syndrome and effective for developing new coping strategies. The program may help families to establish a new level of family adaptation. Health care providers including community nurses can effectively utilize website navigation and phone interviews as part of early family intervention.

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