Indian Dermatology Online Journal

BRIEF REPORT
Year
: 2021  |  Volume : 12  |  Issue : 2  |  Page : 276--280

Impact of a psychodermatological education package on the subjective distress, family burden, and quality of life among the primary caregivers of children affected with epidermolysis bullosa


PA Manomy1, Vamsi K Yenamandra2, Garima Dabas2, Poonam Joshi1, Atul Ambekar3, Vishnubhatla Sreenivas4, Vinod K Sharma2, Manju Vatsa1, Surya Ravindran2, Gomathy Sethuraman2 
1 College of Nursing, All India Institute of Medical Sciences, New Delhi, India
2 Department of Dermatology, All India Institute of Medical Sciences, New Delhi, India
3 Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, India
4 Department of Biostatistics, All India Institute of Medical Sciences, New Delhi, India

Correspondence Address:
Gomathy Sethuraman
Department of Dermatology, All India Institute of Medical Sciences, New Delhi - 110 029
India

Background: Epidermolysis bullosa (EB) has profound effect on the subjective distress, family burden, and quality of life (QOL) of the primary caregivers (PCG). Knowledgeable PCG can efficiently manage children with these skin diseases and also improve their QOL. Objectives: To assess the subjective distress, family burden, and QOL, to develop and assess the short-term effectiveness of a psycho-dermatological education package (PDEP) for the PCG of children with EB. Methods: In this interventional study, 30 PCG of EB were assessed for subjective distress, family burden, and QOL. PDEP, a structured educational tool explaining the disease and its care and stress management, was developed by the authors for the PCG and administered to them after one month of enrolment. They were reassessed after three months and compared with the baseline assessment scores. For comparison, 37 PCG of CI were also studied. Results: The mean age (years) of the subjects was 28.7 ± 6.7 for EB and 30.5 ± 4.6 for CI. The mean or median (range) baseline scores for subjective distress, family burden and QOL of PCG (n = 20) of EB were 8.4 ± 7.9, 6.5 (0-30); 28.5 ± 17.5, 24 (7-77) and 12.6 ± 6.7, 11.5 (4-28) and for PCG (n = 14) of CI were 12 ± 4.3, 38.9 ± 16.2 and 17.7 ± 3.6 respectively. The PDEP improved the QOL (p = 0.01), knowledge (p < 0.01) and practices (p < 0.001) for PCG of EB and it improved subjective distress (p < 0.001), QOL (p < 0.01) and knowledge (p < 0.01) for PCG of CI. Conclusions: PDEP is an effective educational tool in improving the QOL and knowledge of PCG, which in turn provides efficient management and psychological support to children affected with EB and CI. It should, therefore, be routinely used for educating the PCG of children with EB and CI.


How to cite this article:
Manomy P A, Yenamandra VK, Dabas G, Joshi P, Ambekar A, Sreenivas V, Sharma VK, Vatsa M, Ravindran S, Sethuraman G. Impact of a psychodermatological education package on the subjective distress, family burden, and quality of life among the primary caregivers of children affected with epidermolysis bullosa.Indian Dermatol Online J 2021;12:276-280


How to cite this URL:
Manomy P A, Yenamandra VK, Dabas G, Joshi P, Ambekar A, Sreenivas V, Sharma VK, Vatsa M, Ravindran S, Sethuraman G. Impact of a psychodermatological education package on the subjective distress, family burden, and quality of life among the primary caregivers of children affected with epidermolysis bullosa. Indian Dermatol Online J [serial online] 2021 [cited 2022 Jan 23 ];12:276-280
Available from: https://www.idoj.in/article.asp?issn=2229-5178;year=2021;volume=12;issue=2;spage=276;epage=280;aulast=Manomy;type=0