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“It’s not our children, but we who are really disabled”: Parent perspectives from India

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Aim
Caring for children with disabilities brings about a significant impact on the parents and families. The purpose of this study was to gather insights on their lived experience of caring for a child with complex communication needs (CCNs).
Method
Interpretative phenomenological analysis (IPA) was employed in an in-depth study of a sample of parents of children with CCNs. Purposive sampling was used to identify participants. Semi-structured interviews were carried out with 16 parents of 15 children with CCNs aged from 3 to 27 years who were all obtaining services in a rehabilitation center in Kerala.
Results
Analysis of the data identified several themes related to the children, families and larger society. The themes which will be highlighted in this presentation will be 1) opportunities and lack of opportunities for social interaction 2) stigma and social isolation in society 3) caregiver burden/ ‘call of life’. The complex interaction of these themes invites a discussion of the following concerns, a) less than optimal life participation and opportunities for social interaction which could be one of the major determiner for a child with CCNs communication development, b) contradictory effect on QOL (Quality of Life) of parents/caregivers will be discussed.
Conclusion
Parental caregiving in the context of CCNs is a multifaceted experience that encompasses negative (burdens) and positive dimensions (uplifts). This may support risk and protective processes that influence family adaptation and the child's development.

Author(s):

Monica Kaniamattam    
UNIVERSITY OF LOUISIANA AT LAFAYETTE
United States

Judith Oxley    
UNIVERSITY OF LOUISIANA AT LAFAYETTE
United States

Jack Damico    
UNIVERSITY OF LOUISIANA AT LAFAYETTE
United States

 

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