Hospital Based Psychosocial Support Program for Children with ALL and their Families: A Comprehensive Triad’s Perspective
- 81 Downloads
To elucidate potential target areas of intervention and mechanisms for implementation of intervention for children with cancer during the treatment phase.
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.
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.
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.
KeywordsPsychoncology Qualitative method Psychosocial support
The authors thank Ms. Mamta, Ms. Mitika and Ms. Ananya for their support during the course of this research.
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.
Compliance with Ethical Standards
Conflict of Interest
- 1.Summary-Report on Causes of Death: 2001–2003 in India. Available at: http://www.censusindia.gov.in/Vital_Statistics/Summary_Report_Death_01_03. pdf. Accesssed on 24th Sep 2013.
- 2.Rajajee S, Ezhilarasi S, Indumathi D. Psychosocial problems in families of children with cancer. Indian J Pediatr. 2007;74:837–9.Google Scholar
- 3.Abraham A, Appaji L. Cognitive assessment of children with acute lymphoblastic leukemia: preliminary findings. Indian J Med Paediatr Oncol. 2009;30:14–9.Google Scholar
- 4.Seth T. Communication to pediatric cancer patients and their families: a cultural perspective. Indian J Palliat Care. 2010;16:26–9.Google Scholar
- 5.Chari U, Hirisave U, Appaji L. Exploring play therapy in pediatric oncology: a preliminary endeavour. Indian J Pediatr. 2013;80:303–8.Google Scholar
- 6.The National Comprehensive Cancer Network USA (2013). Annual report. Available at: http://www.nccn.org/about/annual_report/index.html#20. Accessed on 17th Sep 2017.
- 7.Erickson SJ, Steiner H. Trauma and personality correlates in long term pediatric cancer survivors. Child Psychiatry Hum Dev. 2001;31:195–213.Google Scholar
- 8.Kazak AE, Boeving CA, Alderfer MA, Hwang WT, Reilly A. Posttraumatic stress symptoms during treatment in parents of children with cancer. J Clin Oncol. 2005;23:7405–10.Google Scholar
- 9.Vrijmoet-Wiersma CM, van Klink JM, Kolk AM, Koopman HM, Ball LM, Maarten Egeler R. Assessment of parental psychological stress in pediatric cancer: a review. J Pediatr Psychol. 2008;33:694–706.Google Scholar
- 10.Kazak AE, Simms S, Alderfer MA, et al. Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer. J Pediatr Psychol. 2005;30:644–55.Google Scholar
- 11.Svavarsdottir EK, Sigurdardottir AO. Benefits of a brief therapeutic conversation intervention for families of children and adolescents in active cancer treatment. Oncol Nurs Forum. 2013;40:E346–57.Google Scholar
- 12.Hoekstra-Weebers JE, Heuvel F, Jaspers JP, Kamps WA, Klip EC. Brief report: an intervention program for parents of pediatric cancer patients: a randomized controlled trial. J Pediatr Psychol. 1998;23:207–14.Google Scholar
- 13.Wakefield CE, Sansom-Daly UM, McGill BC, et al. Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. Trials. 2015;16:153.Google Scholar
- 14.Ringnér A, Björk M, Olsson C, Graneheim UH. Person-centred information to parents in paediatric oncology (the PIFBO study): a study protocol of an ongoing RCT. BMC Nurs. 2015;14:69.Google Scholar
- 15.Sahler OJ, Dolgin MJ, Phipps S, et al. Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: results of a multisite randomized clinical trial. J Clin Oncol. 2013;31:1329–35.Google Scholar
- 16.Cernvall M, Carlbring P, Ljungman L, Ljungman G, von Essen L. Internet-based guided self help for parents of children on cancer treatment: a randomized controlled trial. Psychooncology. 2015;24:1152–8.Google Scholar
- 17.Cernvall M, Carlbring P, Ljungman G, von Essen L. Guided self-help as intervention for traumatic stress in parents of children with cancer: conceptualization, intervention strategies, and a case study. J Psychosoc Oncol. 2013;31:13–29.Google Scholar
- 18.Marsland AL, Long KA, Howe C, Thompson AL, Tersak J, Ewing LJ. A pilot trial of a stress management intervention for primary caregivers of children newly diagnosed with cancer: preliminary evidence that perceived social support moderates the psychosocial benefit of intervention. J Pediatr Psychol. 2013;38:449–61.Google Scholar
- 19.Noughabi FA, Iranpoor D, Yousefi H, Abrakht H, Dehkordi FG. Effect of instructing care program through group discussion on the quality of life of the parents of the children afflicted with leukemia. Glob J Health Sci. 2016;8:197–204.Google Scholar
- 20.Sidhu R, Passmore A, Baker D. The effectiveness of a peer support camp for siblings of children with cancer. Pediatr Blood Cancer. 2006;47:580–8.Google Scholar
- 21.Srinivasan A, Tiwari K, Scott JX, Ramachandran P, Ramakrishnan M. Impact of cancer support groups on childhood cancer treatment and abandonment in a private pediatric oncology centre. Indian J Palliat Care. 2015;21:68–71.Google Scholar
- 22.Johansen C, Dalton SO. Survivorship in new harbors. Acta Oncol. 2017;56:119–22.Google Scholar
- 23.Robb K, Stubbings S, Ramirez A, et al. Public awareness of cancer in Britain, a population-based survey of adults. Br J Cancer. 2009;101:S18–23.Google Scholar
- 24.Halpin HA, Morales-Suárez-Varela MM, Martin-Moreno JM. Chronic disease prevention and the new public health. Public Health Rev. 2010;32:120–54.Google Scholar
- 25.Freedman B. Offering truth. One ethical approach to the uninformed cancer patient. Arch Intern Med. 1993;153:572–6.Google Scholar
- 26.Alexander PJ, Dinesh N, Vidyasagar MS. Psychiatric morbidity among cancer patients and its relationship with awareness of illness and expectations about treatment outcome. Acta Oncol. 1993;32:623–6.Google Scholar
- 27.Hosaka T, Aoki T, Ichikawa Y. Emotional states of patients with hematological malignancies: preliminary study. Jpn J Clin Oncol. 1994;24:186–90.Google Scholar
- 28.Conklin HM, Li C, Xiong X, Ogg RJ, Merchant TE. Predicting change in academic abilities after conformal radiation therapy for localized ependymoma. J Clin Oncol. 2008;26:3965–70.Google Scholar
- 29.Reddick WE, White HA, Glass JO, et al. Developmental model relating white matter volume to neurocognitive deficits in pediatric brain tumor survivors. Cancer. 2003;97:2512–9.Google Scholar
- 30.Katz ER, Varni JW, Rubinstein CL, Blew A, Hubert N. Teacher, parent, and child evaluative ratings of a school reintegration intervention for children with newly diagnosed with cancer. Children’s Health Care. 1992;21:69–75.Google Scholar
- 31.Noll RB, Bukowski WM, Davies WH, Koontz K, Kulkarni R. Adjustment in the peer system of adolescents with cancer: a two-year study. J Pediatr Psychol. 1993;18:351–64.Google Scholar
- 32.Lou VW. Factors related to the psychological well-being of parents of children with leukemia in China. J Psychosoc Oncol. 2006;24:75–88.Google Scholar
- 33.Levy MH, Chwistek M, Mehta RS. Management of chronic pain in cancer survivors. Cancer J. 2008;14:401–9.Google Scholar
- 34.Schultz KA, Ness KK, Whitton J, et al. Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2007;25:3649–56.Google Scholar