ICNC2018 Abstracts & Symposia Proposals, ICNC 2014

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Psychosocial intervention programme for families of patients with Duchenne Muscular Dystrophy
Priya Treesa Thomas, Prakashi Rajaram, Nalini A

Last modified: 2014-04-03

Abstract


Introduction Children with Duchenne Muscular Dystrophy and their families go through significant stress, which has been explored in previous research. Little effort has been made to report interventions targeting these issues. The present study aims to assess an intervention with families of children with DMD based on psychosocial typology of chronic genetic conditions.

Method A pretest post test experimental design was used. Caregivers of 36 children with DMD attending  neuromuscular disorders clinic of a tertiary referral center for Neurology were studied.  All the children had the diagnosis of DMD confirmed by genetic analysis or absence of dystrophin staining on muscle Immunohistochemistry, were males, in the age range of 4 - 13 years. Caregivers included fathers (19), mothers (17) or both in age range of 27 – 43 yrs. All the parents received individualized intervention based on the psycho social conceptualization of chronic disease by Rolland (1987) targeting specific areas of psychosocial needs identified, caregiver knowledge & attitude, burden of care giving and coping.

Results The programme was effective in increasing the Knowledge, attitude and wellbeing, and there was reduction in Family burden. There was shifting of coping strategies from emotional avoidant to active problem focused coping. The limitations of the study and its implications for practice, training and research will be discussed.

Conclusion Parents will benefit from psychosocial intervention to help them develop coping skills to meet their children’s needs and their own.


Keywords


Duchenne Musuclar Dystrophy, caregiver wellbeing, psychosocial intervention

References


Rolland J.S. (1987). Chronic illness and the life cycle: a conceptual framework. Family process, 26(2), 203 – 221.


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