Parental Experience of Hematopoietic Stem Cell Transplantation for Children with Primary Immune Deficiency Disorders
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SCIENTIFIC LETTER
Parental Experience of Hematopoietic Stem Cell Transplantation for Children with Primary Immune Deficiency Disorders Geeta Madathil Govindaraj 1 & U. Ramya 2 & Revathi Raj 2 & E. P. Athulya 3 & Abhinav Jain 4 & Vinod Scaria 4 & M. P. Jayakrishnan 1 & Sridhar Sivasubbu 4 & D. Dhanasooraj 3 & V. T. Ajithkumar 1 & Amol R. Dongre 5 & P. Krishnakumar 6 Received: 17 July 2020 / Accepted: 12 October 2020 # Dr. K C Chaudhuri Foundation 2020
To the Editor: Primary immune deficiency disorders contribute to significant mortality and morbidity in children [1]. While the mainstay of treatment includes antimicrobial prophylaxis and immunoglobulin replacement, hematopoietic stem cell transplantation (HSCT) is often the only curative option, which has not been used extensively in developing countries due to suboptimal accessibility, affordability and awareness [2–4]. A cohort of children with primary immunodeficiency disorders (PIDs) had been identified through a collaborative program between the Government Medical College, Kozhikode and CSIR Institute of Genomics and Integrative Biology, Delhi. HSCT could be done in 13 children – 4 (30.8%) children with Wiskott-Aldrich syndrome, 2 (15.4%) each with leukocyte adhesion deficiency and severe combined immune deficiency and X-linked agammaglobulinemia (2;15.4%) and 1 (7.7%) each with congenital neutropenia, Fanconi anemia, and hyper IgM syndrome. We conducted a focus group discussion among the parents to document their experience, identify barriers and describe solutions. The FGDs were conducted in two sessions over 60 min each by a pediatrician experienced in qualitative methods and parents of 12 children participated.
The guide for the FGD with broad open-ended questions was prepared in consultation with experts and translated into Malayalam. The transcripts were coded and cross-checked by researchers trained in qualitative methods, followed by manual analysis. After the FGD, a questionnaire survey was conducted to quantify individual experiences. IEC approval was obtained (GMCKKD/RP2020/IEC/428). The major theme identified in FGD was multifactorial parental distress in social, financial, psychological and physical domains. Reasons for distress in the social domain were isolation and leaving home for an extended period. Financial distress stemmed from lack of a system to avail government funding and delay in accessing it, psychological distress was due to fear and uncertainty regarding the outcomes of both the donor and the recipient and physical distress occurred due to symptoms like fever, vomiting, diarrhea and rash. The parents suggested establishing facilities for HSCT closer to home, a well-functioning system to access government funds and formation of support groups (Table 1). It is recommended that programs to address caregiver well-being in physical, psychological, social, and spiritual domains should be developed for improved quality of life of caregivers of children with immune deficiency disorders [5].
* Geeta Madathil Govindaraj [email protected]
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