Hulya Bilgin1, Leyla Kucuk. 1. Department of Psychiatric Nursing, Florence Nightingale School of Nursing, Istanbul University, 34381 Istanbul, Turkey. hcbilgin@hotmail.com
Abstract
PROBLEM: Autism is an illness with severe deficits in reciprocal social interactions, imagination, communication, and restricted or unusual behavioral repertories that affect all areas of a child's life such as daily living activities, home/school life, and relationships with family members and others. Yet, there is much to be learned about the impact of this disorder on parents' experiences, and ways in which their lives are altered and ways that they can be assisted to better manage the home environment. METHODS: The purpose of this study was to explore and categorize the experiences of mothers having an autistic child using a phenomenological design in the qualitative tradition. Semistructured interviews were conducted with 43 mothers regarding their experiences with their autistic children. Data were analyzed with deductive content analysis based on coding, and were grouped into categories based on common themes. The distributions of common responses in categories were presented as percentages. FINDINGS: Based on this qualitative study, mothers expressed feelings of burden and stress because of their child's behaviors associated with autism, as well as their own role and future expectations, and the complexity of care needed by their children at home. CONCLUSIONS: This study provided new knowledge about the difficulties and experiences of mothers of autistic children in Turkey. The results underscored the needs of mothers who require support from family members, healthcare organizations, and society. The findings support the need for training programs for mothers and parents conducted by nurses and other healthcare professionals who have special knowledge and skill to provide education and modeling of therapeutic interventions.
PROBLEM: Autism is an illness with severe deficits in reciprocal social interactions, imagination, communication, and restricted or unusual behavioral repertories that affect all areas of a child's life such as daily living activities, home/school life, and relationships with family members and others. Yet, there is much to be learned about the impact of this disorder on parents' experiences, and ways in which their lives are altered and ways that they can be assisted to better manage the home environment. METHODS: The purpose of this study was to explore and categorize the experiences of mothers having an autisticchild using a phenomenological design in the qualitative tradition. Semistructured interviews were conducted with 43 mothers regarding their experiences with their autisticchildren. Data were analyzed with deductive content analysis based on coding, and were grouped into categories based on common themes. The distributions of common responses in categories were presented as percentages. FINDINGS: Based on this qualitative study, mothers expressed feelings of burden and stress because of their child's behaviors associated with autism, as well as their own role and future expectations, and the complexity of care needed by their children at home. CONCLUSIONS: This study provided new knowledge about the difficulties and experiences of mothers of autisticchildren in Turkey. The results underscored the needs of mothers who require support from family members, healthcare organizations, and society. The findings support the need for training programs for mothers and parents conducted by nurses and other healthcare professionals who have special knowledge and skill to provide education and modeling of therapeutic interventions.