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A phenomenological study of the experience of being a mother of a child with cerebral palsy.

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Pediatr Nurs, 26 (4): 407--410 (2000)

Аннотация

PURPOSE: The purpose of this study is to describe the lived experience of being the mother of a child with cerebral palsy. METHOD: A convenience sample of 15 mothers whose children with spastic cerebral palsy receiving care at the high-risk and neurology clinics of a medical center in a southern state participated in two audiotaped interviews. The mothers described how being the mother of a child from 1 to 5 years of age with cerebral palsy affects her life. Labov's (1982) transcription and Colaizzi's (1978) phenomenological methods were used to analyze transcripts of the interviews. An exhaustive description of the experience was written, and subsequently, in a second interview, was validated by the mothers. FINDINGS: Four clustered themes emerged from the interviews: caregiver burden, family/social support, women's/mothers' roles, and socioeconomics. CONCLUSION: Mothers reported the following: (a) strong family relationships are counted on during difficult times; (b) caregiving stressors and day-to-day caregiving is difficult; (c) a positive caregiver role and interest in learning about cerebral palsy improve children's quality of life; (d) therapy and social services assist them with their children; (e) multiple roles and alterations in activities affect daily living; and (f) families financial status is affected.

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