LSHSS Family Quality of Life Following Early Identification of Deafness

T he importance of a family’s well-being in the lives and development of young children is widely acknowledged (Allen & Petr, 1996; Bailey & Bruder, 2005; Bodner-Johnson, 1986; Bruder, 2000; Calderon, Bargones, & Sidman, 1998; Dunst, 2002; Guralnick, 1997; Turnbull & Turnbull, 2001). Part C of the Individuals With Disabilities Education Act (IDEA) Amendments of 1997 requires educators and related service providers to enhance the capacity of families to meet the needs of infants and toddlers. Recognizing the centrality of the family in the life of the child, clinicians are urged to support family strengths and needs in order to enhance thewell-being of the child within the context of the family (Bailey & Bruder, 2005; Bailey et al., 1998; Bruder, 2000). The resiliency model of family stress, adjustment, and adaptation provides a conceptual framework for understanding the dynamic relationship between family well-being, stressors, and family resources (McCubbin & McCubbin, 1993; McCubbin & Patterson, 1983). This resiliency model is based on the earlier work of Reuben Hill (1949, 1958). This conceptual model emphasizes the importance of building the family’s capacity to adapt positively to change and/or stress. The well-being of the family system is viewed as a complex interaction of demands, resilience resources, and the family’s ability to adapt and problem solve. Based on this model, the health of the family system is a balancing act between stressors and the family’s capacity to handle stress. The potential impact of deafness on the family system can be understood given the delicate balance between the demands placed on the family and the resources that mediate stressors. Families’ resistance to stressors and their ability to positively adapt to the demands associated with childhood deafness may be influenced by the capacity of the family system, including the family’s interpersonal, social, and economic resources. Considering this model, families may vary in their adaptation following the identification of deafness in one or more of their children. Families with adequate resources may show resilience and adaptation to stressors; other family systems may be vulnerable due to a depletion of resistance resources. Given the importance of the health of the family system, resources that contribute to a family’s quality of life may warrant further attention during assessment and early intervention. Although the literature includes varied definitions of quality of life (Cummins, 1997; Hughes & Hwang, 1996), key characteristics identified in conceptualizing and measuring the quality of life of individuals include (a) general feelings of well-being, (b) feelings of positive social involvement, and (c) opportunities to achieve personal ABSTRACT: Purpose: Family members’ perceptions of their quality of life were examined following early identification of deafness in children. Method: A questionnaire was used to solicit ratings of satisfaction from the family members of 207 children who were deaf and younger than 6 years of age. Results: Results indicated that families were generally satisfied with the areas of family life surveyed. Descriptive analysis suggested lower satisfaction ratings in the area of emotional wellbeing. Families also reported that their child’s deafness had the largest impact on their emotional well-being. Family members of children using oral communication with a cochlear implant reported higher satisfaction with their child’s speech production and perception outcomes than family members of children using hearing aids alone. Implications: We recommend that service providers and early hearing detection and intervention program coordinators consider additional supports for family well-being following the early identification of deafness in children.