Deaf-blindness: Voices of mothers concerning leisure-time physical activity and coping with disability

Abstract

Background: Deaf-blindness (DB) is a distinct disability because of combined impairments of hearing and visual functions, causes severe difficulties in the psychosocial area, communication, social interaction, and interaction with the environment. Leisure-time physical activities (LTPA) properly planned and executed can be beneficial in providing support and facilitating coping as strategy for managing stress in families of children with disabilities. Appropriate LTPA also influence the quality of the lives of people with DB. Our study was also based on coping theory. Objective: The purpose of this study was to examine the beliefs of mothers with regard to leisure-time physical activity of families of children with deaf-blindness, the benefits that activities can bring to families of children with DB, needs and the barriers to participation. Methods: Participants of this study were five mothers of children with DB, who were interviewed using the phenomenological tradition of qualitative inquiry. Results: Findings show six emergent themes in relation to perceived needs of children with DB: structure of life; coactive engagement; happiness and well-being; doing “normal things”; appropriate support and services; and appropriate communication. Conclusion: The results of the present study indicated that there are various support systems, which could facilitate participation in LTPA: (a) special schools and respite care centers; (b) special programs such as family camps or programs where children can learn basic skills needed for participation in physical activities (e.g., swimming or biking); (c) adapted equipment which can allow participation; (d) parental support groups where parents can share common experiences or religious support groups, which might be able to accept a family with a child with DB as equal member of their community; and finally (e) assistance, which could have a formal form of professionals or paraprofessionals working with persons with DB. The absence of these support systems creates barriers to participation in LTPA due to the children’s lack of skills, limited accessibility and non-existence of specialized year round programs.