Development of family empowerment programs for caregivers of children with disabilities at home: Interim report up to "implementation of pretesting"

Objective: For both children with disabilities and their families to continue living at home, families should achieve and maintain healthy family functioning. This is achieved by enhancing family empowerment. This pilot study systemizes the program development process and identifies the problems and results to move to the program implementation. Methods: The program was developed through a step-by-step process emphasizing on the previous research findings, theories, and collaboration with families. We identified the factors related to family empowerment from an in-depth interview study of 34 families and the Delphi method questionnaire survey of 158 professionals. Next, we identified a family empowerment model by a national survey of 1,659 families. We further reviewed literature on family intervention programs, set action goals based on the theoretical framework of program formulation, and finally developed a family empowerment program with the families. The problems and effectiveness of “implementation of pretesting” were qualitatively and quantitatively verified. Results: Through the program, the participants created eco-maps and life charts, dealt with issues in their daily lives, set goals for the life they wanted, worked toward those goals, and took actions to make adjustments in their lives and use resources. Due to the small number of participants, the efficacy of the program was not significantly confirmed; however, no adverse events were observed. Conclusions: We developed and pretested a participatory program to enhance family empowerment. As a pilot study, the results support the value of conducting the program on a larger scale. Further verification of the effects of our program is required.