The process of parenting a child with a disability: normalization through accommodations.
Professionals commonly advise parents of disabled children to raise their children as they would children who were not disabled. The purpose of this study was to describe the management styles used by the parents of 15 children and adolescents with osteogenesis imperfecta. In particular, the behavioural strategies related to providing a normalized existence for the child and the family are discussed. Sources of threats, validation, and support for the process are also described. The convenience sample of parents was selected from the appointment calendar of a specialty clinic in a midwestern philanthropic, paediatric-orthopaedic referral hospital. Qualitative interview data were gathered using a semi-structured guide. During interviews parents described behavioural strategies they used to normalize their child's and family life. Data were analysed using a previously developed framework of normalization. This work of normalization was described as a constant process of active accommodation to the changing physical and emotional needs of the child or adolescent. It was initiated out of practical necessity at birth as a conscious solution to problems with activities of daily living, relating to the child, and engaging in family activities. Certain events constituted 'threats' to normalization and served as an impetus for parents to alter behavioural strategies. Implications for clinical practice and research are explicated.
Deatrick
J A
JA
College of Nursing, University of Illinois, Chicago.
Knafl
K A
KA
Walsh
M
M
D000203:Activities of Daily Living; D000293:Adolescent; D002648:Child; D002668:Child Rearing; D003858:Dependency, Psychological; D005260:Female; D006801:Humans; D008019:Life Style; D008297:Male; D010013:Osteogenesis Imperfecta / Q000523:psychology*; D010287:Parent-Child Relations