Parents' perceptions in family-centered early intervention for children with speech-language disabilities : the relationship between meaning and the experience of stress
Fehsenfeld, Del A.
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The meaning that families give to a family member's disability is crucial to their management of the experience. However, very little research has examined the perceptions of families participating in family-centered early intervention treatment programs for children with disabilities. Qualitative methodology was utilized to explore the perceptions of parents participating in the Family-Based Treatment Program for their child's speech- language disability. The findings emerged into the following three categories: (1) emotions experienced by parents, (2) the ways that parents coped with disability, and (3) parental togetherness. First, parents experienced intense emotions such as anger, worry, guilt, powerlessness, and disappointment in the process of dealing with their child's disability. Second, parents coped with their child's disability by changing their definitions of the problem as well as benefitting from the strategies utilized in the Family-Based Treatment Program. Third, fathers began to participate more in the daily care of their child's disability as a result of involvement in the Family-Based Treatment Program. In addition, the degree of similarity in parents' definitions of their child's disability impacted their relationship with each other. These findings were linked with the literature on family stress and coping, and theory was formulated to account for parents’ experience with their child's disability within the context of the Family-Based Treatment Program. The findings have important implications for how family-centered early intervention programs that treat disabilities should be designed. In addition to utilizing the substantial family stress and coping literature, programs should also incorporate the following strategies that parents used to cope with their child's disability in the study: encouraging family participation, facilitating open communication among family members, seeking family members' opinions, and modelling techniques for working with their child's disability.