Abstract
When a mother has a child with a chronic impairment, the occupational demands of mothering extend to address the specialized needs of that child. This research explores how the type of hidden impairment in a child influences family routines and occupations. This qualitative study consisted of interviews with 22 mothers of children with attention deficit hyperactivity disorder (ADHD), a behavioral disorder, and 22 mothers of children with cystic fibrosis, a physical disorder. Open-ended questions were used to explore family demands, resources, time use, routines, concerns, and support.
The transcripts of these interviews were analyzed in terms of consistency with existing literature on parenting the child with hidden disability, and for emergent themes. In this analysis the experiences of mothers of children with cystic fibrosis were consistent with research findings on other chronic conditions, with these mothers reporting that family provides them with extensive physical and emotional support. Although mothers of children with cystic fibrosis reported a persistent emotional sorrow, they felt they were able to “normalize” their daily routines. In contrast, mothers of children with ADHD reported little family support, high perception of child-related demands, and less confidence in their success in mothering these children. In describing their daily routines, these mothers often stated that there was no such thing as a “normal” day. They felt constantly “on alert” and did not feel that they had “normal” routines. Based on this study, mothers of children with ADHD felt distress because their child did not easily conform to social standards, and were likely to express exhaustion in their role as “mother.” The pattern of responses offered by these participants differs significantly from that of the participants whose children have cystic fibrosis, and from the usual pattern of coping with chronic childhood disability documented in the literature.