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Hospital Based Psychosocial Support Program for Children with ALL and their Families: A Comprehensive Triad’s Perspective

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Abstract

Objectives

To elucidate potential target areas of intervention and mechanisms for implementation of intervention for children with cancer during the treatment phase.

Methods

Focused group discussion (FGDs) served as a primary source of providing phenomenal perspectives to explore the key objective. Eight focus groups of 45–60 min each were held with 5–9 members in each discussion. The participants were either patients, their caregivers or health care providers. The focus group audio recordings were professionally transcribed after all identifiers were removed. Employing a constructivist paradigm with a phenomenological approach, also known as emergent-systematic focus group design the study reported on families’ experiences of childhood cancer as construction of objective reality. Investigator triangulation method was adopted to ensure trustworthiness.

Results

Using constant comparison analysis, multistage process analysis was done which resulted in 849 codes, 32 subthemes, 20 themes and 5 domains. A total of 64 participants participated: 4 FGDs with parents of children with ALL (n = 31); 1 FGD with professionals working in the field of cancer (n = 10) and 3 FGDs with children with ALL (n = 23). Participant’s mean age at the time of study was 10 y (+3.3) for children; 37 y (+4.93) for caregivers and 35 y (+3.5) for professionals. The number of participants and their age range at study varied slightly between the eight focus groups.

Conclusions

Caregivers presented care burden and compromised aspects of Quality of life (QOL). An effective and culturally sensitive psychosocial support for patients and their families during and post treatment, in addition to medical therapy, is strongly recommended.

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Acknowledgements

The authors thank Ms. Mamta, Ms. Mitika and Ms. Ananya for their support during the course of this research.

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Authors and Affiliations

  1. Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, 110029, India

    Tanuja Kaushal, Sujata Satapathy, Rakesh Kumar Chadda & Rajesh Sagar

  2. Dr. B.R.A. Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India

    Sameer Bakhshi

  3. Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India

    Savita Sapra

Authors
  1. Tanuja Kaushal
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  2. Sujata Satapathy
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  3. Rakesh Kumar Chadda
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Contributions

TK and SujataS: Conception, design, acquisition of data, analysis and interpretation of data; RKC: Drafting the article and revising it critically for important intellectual content; SB: Conception, design and revising the text; RS and SavitaS: Analysis, interpretation and critical evaluation of the article. SujataS will act as guarantor for this paper.

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Correspondence to Tanuja Kaushal.

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Kaushal, T., Satapathy, S., Chadda, R.K. et al. Hospital Based Psychosocial Support Program for Children with ALL and their Families: A Comprehensive Triad’s Perspective. Indian J Pediatr 86, 118–125 (2019). https://doi.org/10.1007/s12098-018-2679-z

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  • DOI: https://doi.org/10.1007/s12098-018-2679-z

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