Download PDF
CC BY-NC-ND 4.0 · Indian J Med Paediatr Oncol 2022; 43(03): 262-269
DOI: 10.1055/s-0042-1750208
Original Article

Child's Understanding of Cancer when Faced with Advancing Disease: A Retrospective Chart Review

Arunangshu Ghoshal 
1   Department of Palliative Medicine, Tata Memorial Hospital, Homi Bhabha National Institute, Mumbai, Maharashtra, India
,
Mary Ann Muckaden
1   Department of Palliative Medicine, Tata Memorial Hospital, Homi Bhabha National Institute, Mumbai, Maharashtra, India
,
Chavi Garg
2   Village Mosaic, Fontbonne Ministries, Sisters of St. Joseph, Toronto, Canada
,
Jayanthi Iyengar
1   Department of Palliative Medicine, Tata Memorial Hospital, Homi Bhabha National Institute, Mumbai, Maharashtra, India
,
Anuja Damani
1   Department of Palliative Medicine, Tata Memorial Hospital, Homi Bhabha National Institute, Mumbai, Maharashtra, India
,
K.V. Ganpathy
3   JASCAP (Jeet Association for Support to Cancer Patients), Mumbai, Maharashtra, India
› Author Affiliations Funding None.
› Further Information
   Permissions and Reprints

Abstract

Introduction It is difficult to comprehend a child's understanding of disease-related information as they might be unwilling to talk or feel inhibited about raising their concerns. Understanding children's perception is important to facilitate better communication in palliative care.

Objectives To study child's understanding of advancing disease when referred to the Pediatric Palliative Care Services.

Materials and Methods A retrospective chart review of 34 case record forms from March 2019 to March 2020 was conducted after obtaining a waiver of consent and Institutional Ethics Committee approval. The inclusion criteria were children having advanced cancer referred for palliative care, incomplete records were excluded. Data were analyzed using thematic analysis.

Results Twenty-three were male, and 11 were female children, the mean age was 12 years. Five major themes were identified—the child's understanding of disease diagnosis and prognosis, nature of communication between parents and the child, barriers to communication, child's means of support, and interventions used during counseling.

Conclusion Communication between children suffering from advanced cancer and their parents/caregivers is a sensitive issue, and noncommunication is often due to mutual effort to shield each other from the stress of difficult conversations. Lack of communication contributes to poor coping and forces children to seek comfort in other sources leaving parents distressed. Psychological interventions like resource building and psychoeducation are effective.

Keywords

cancer - palliative care - pediatrics - thematic analysis - qualitative research - chart review


Publication History

Article published online:
02 July 2022

© 2022. Indian Society of Medical and Paediatric Oncology. This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India

 

  • References

  • 1 Lipstein EA, Brinkman WB, Britto MT. What is known about parents' treatment decisions? A narrative review of pediatric decision making. Med Decis Making 2012; 32 (02) 246-258
    CrossrefPubMedGoogle Scholar
  • 2 Granek L, Krzyzanowska MK, Tozer R, Mazzotta P. Oncologists' strategies and barriers to effective communication about the end of life. J Oncol Pract 2013; 9 (04) e129-e135
    CrossrefPubMedGoogle Scholar
  • 3 Verberne LM, Kars MC, Schouten-van Meeteren AYN. et al. Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. Eur J Pediatr 2019; 178 (07) 1075-1085
    CrossrefPubMedGoogle Scholar
  • 4 Keim MC, Lehmann V, Shultz EL. et al. Parent-child communication and adjustment among children with advanced and non-advanced cancer in the first year following diagnosis or relapse. J Pediatr Psychol 2017; 42 (08) 871-881
    CrossrefPubMedGoogle Scholar
  • 5 Muckaden M, Dighe M, Balaji P. et al. Paediatric palliative care: theory to practice. Indian J Palliat Care 2011; 17 (Suppl): S52-S60
    CrossrefPubMedGoogle Scholar
  • 6 Myant KA, Williams JM. Children's concepts of health and illness: understanding of contagious illnesses, non-contagious illnesses and injuries. J Health Psychol 2005; 10 (06) 805-819
    CrossrefPubMedGoogle Scholar
  • 7 Vincenten JA, Sector MJ, Rogmans W, Bouter L. Parents' perceptions, attitudes and behaviours towards child safety: a study in 14 European countries. Int J Inj Contr Saf Promot 2005; 12 (03) 183-189
    CrossrefPubMedGoogle Scholar
  • 8 Korkmaz B. Theory of mind and neurodevelopmental disorders of childhood. Pediatr Res 2011; 69 (5 Pt 2): 101R-108R
    CrossrefPubMedGoogle Scholar
  • 9 Aldridge J, Shimmon K, Miller M, Fraser LK, Wright B. ‘I can’t tell my child they are dying'. Helping parents have conversations with their child. Arch Dis Child Educ Pract Ed 2017; 102 (04) 182-187
    CrossrefPubMedGoogle Scholar
  • 10 Bluebond-Langner M. Worlds of dying children and their well siblings. Death Stud 1989; 13 (01) 1-16
    CrossrefGoogle Scholar
  • 11 Srinath S, Jacob P, Sharma E, Gautam A. Clinical practice guidelines for assessment of children and adolescents. Indian J Psychiatry 2019; 61 (Suppl. 02) 158-175
    PubMedGoogle Scholar
  • 12 Rutishauser C. Communicating with young people. Paediatr Respir Rev 2003; 4 (04) 319-324
    CrossrefPubMedGoogle Scholar
  • 13 Mărginean CO, Meliţ LE, Chinceşan M. et al. Communication skills in pediatrics - the relationship between pediatrician and child. Medicine (Baltimore) 2017; 96 (43) e8399
    CrossrefPubMedGoogle Scholar
  • 14 Morse JM. The significance of saturation. Qual Health Res 1995; 5 (02) 147-149
    CrossrefGoogle Scholar
  • 15 Pridmore P, Bendelow G. Images of health: exploring beliefs of children using the ‘draw-and-write’ technique. Health Educ J 1995; 54 (04) 473-488
    CrossrefGoogle Scholar
  • 16 Angell C, Alexander J, Hunt JA. ‘Draw, write and tell’: a literature review and methodological development on the ‘draw and write’ research method. J Early Child Res 2015; 13 (01) 17-28
    CrossrefGoogle Scholar
  • 17 Scarponi D, Pession A. Play therapy to control pain and suffering in pediatric oncology. Front Pediatr 2016; 4 (DEC): 132
    CrossrefPubMedGoogle Scholar
  • 18 Einarsdottir J, Dockett S, Perry B. Making meaning: children's perspectives expressed through drawings. Early Child Dev Care 2009; 179 (02) 217-232
    CrossrefGoogle Scholar
  • 19 Graneheim UH, Lindgren BM, Lundman B. Methodological challenges in qualitative content analysis: a discussion paper. Nurse Educ Today 2017; 56: 29-34
    CrossrefPubMedGoogle Scholar
  • 20 Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci 2013; 15 (03) 398-405
    CrossrefPubMedGoogle Scholar
  • 21 O'Connor C, Joffe H. Intercoder reliability in qualitative research: debates and practical guidelines. Int J Qual Methods 2020; 19 DOI: 10.1177/1609406919899220.
    CrossrefGoogle Scholar
  • 22 Edlynn E, Kaur H. The role of psychology in pediatric palliative care. J Palliat Med 2016; 19 (07) 760-762
    CrossrefPubMedGoogle Scholar
  • 23 Warth M, Kessler J, Koehler F, Aguilar-Raab C, Bardenheuer HJ, Ditzen B. Brief psychosocial interventions improve quality of life of patients receiving palliative care: a systematic review and meta-analysis. Palliat Med 2019; 33 (03) 332-345
    CrossrefPubMedGoogle Scholar
  • 24 Irwin LG, Johnson JL, Henderson A, Dahinten VS, Hertzman C. Examining how contexts shape young children's perspectives of health. Child Care Health Dev 2007; 33 (04) 353-359
    CrossrefPubMedGoogle Scholar
  • 25 Booth CM, Hammad N. Childhood cancer care: closing equity gaps on the ground. Lancet Oncol 2020; 21 (04) 485-487
    CrossrefPubMedGoogle Scholar
  • 26 Oakley A, Bendelow G, Barnes J, Buchanan M, Husain OAN. Health and cancer prevention: knowledge and beliefs of children and young people. BMJ 1995; 310 (6986): 1029-1033
    CrossrefPubMedGoogle Scholar
  • 27 Reigada C, Sapeta P, Centeno C. The value of the ethnographic approach to research issues in palliative care. Curr Opin Support Palliat Care 2019; 13 (04) 337-343
    CrossrefPubMedGoogle Scholar
  • 28 Salins N, Hughes S, Preston N. Palliative care in paediatric oncology: an update. Curr Oncol Rep 2022; 24 (02) 175-186
    CrossrefPubMedGoogle Scholar