Abstract
Purpose
The focus is on describing the child’s health-related quality of life (HRQL) at the time of diagnosis as perceived by parents, by using an empirical model of their psychosocial context.
Patients and methods
Patients were 128 leukemic children and their families recruited at the Haematology–Oncology Clinic of the Department of Pediatrics, University of Padova. The families were interviewed by a clinical psychologist during the first hospitalization of their children using the Ecocultural Family Interview—Cancer (EFI-C). This interview aimed at understanding the family daily routines as it relates to the child with cancer and the meaning and experience of the situation. Demographic data about children and their families also were collected.
Results
The EFI-C interviews were read for content and then coded; these items were grouped into 11 major dimensions, three dealing with the child in the hospital and eight concerning the family. An empirical model of path analysis was estimated to evaluate perceived child’s HRQL at the second week from the diagnosis inside the psychosocial context. This model shows that perceived child’s HRQL is predicted by parental trust in the medical staff, perceived child coping, and perceived child adaptability. These last two predictors are in turn moderated by the fixed factor child age and mediated by parenting.
Conclusion
A better knowledge of parents’ views and expectations regarding their children’s HRQL during the first treatments for pediatric leukemia may facilitate the communication processes in the hospital and may help to provide improved psychosocial care for the child during the first treatments for leukemia.
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References
McGrath P, Paton MA, Huff N (2004) Beginning treatment for paediatric acute myeloid leukaemia: diagnosis and the early hospital experience. Scand J Caring Sci 18:358–367
Clarke SA, Davies H, Jenney M, Glaser A, Eiser C (2005) Parental communication and children's behaviour following diagnosis of childhood leukaemia. Psychooncology 14:274–281
McCaffrey CN (2006) Major stressors and their effects on the well-being of children with cancer. J Pediatr Nurs 21:59–66
Woodgate RL, McClement S (1998) Symptom distress in children with cancer: the need to adopt a meaning-centered approach. J Pediatr Oncol Nurs 15:3–12
Hockenberry-Eaton M, Diloriao C, Kemp V (1995) The relationship of illness longevity and relapse with self-perception, cancer stressors, anxiety, and coping strategies in children with cancer. J Pediatr Oncol Nurs 12:71–79
Gurney JG, Tersak JM, Ness KK, Landier W, Matthay KK, Schmidt ML, Children's Oncology Group (2007) Hearing loss, quality of life, and academic problems in long-term neuroblastoma survivors: a report from the Children's Oncology Group. Pediatrics 120(5):1229–1236
Zebrack BJ, Zeltzer LK, Whitton J et al (2002) Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease, and non-Hodgkin’s lymphoma: a report from the Childhood Cancer Survivor Study. Pediatrics 100:42–52
Shankar S, Robison L, Jenney ME et al (2005) Health-related quality of life in young survivors of childhood cancer using the Minneapolis–Manchester Quality of Life-Youth Form. Pediatrics 115(2):435–442
Pickard AS, Topfer LA, Feeny DH (2004) A structured review of studies on health-related quality of life and economic evaluation in pediatric acute lymphoblastic leukemia. J Natl Cancer Inst Monographs 33:102–125
Nathan PC, Furlong W, Barr RD (2004) Challenges to the measurement of health-related quality of life in children receiving cancer therapy. Pediatr Blood Cancer 43:215–223
Tremolada M, Axia V, Pillon M, Scrimin S, Capello F, Zanesco L (2005) Parental narratives of quality of life in children with leukemia as associated with the placement of a central venous catheter. J Pain Symptom Manage 30:544–552
Tanner JL, Dechert MP, Frieden IJ (1998) Growing up with a facial hemangioma: parent and child coping and adaptation. Pediatrics 101:446–452
Woodgate RL (2005) A different way of being: adolescents' experiences with cancer. Cancer Nurs 28:8–15
Hicks J, Bartholomew J, Ward-Smith P, Hutto CJ (2003) Quality of life among childhood leukemia patients. J Pediatr Oncol Nurs 20:192–200
Hinds PS, Gattuso JS, Fletcher A et al (2004) Quality of life as conveyed by pediatric patients with cancer. Qual Life Res 13:761–772
Weisner TS (2002) Ecocultural understanding of children's developmental pathways. Hum Dev 45(4):275–281
Nihira K, Weisner TS, Bernheimer LP (1994) Ecocultural assessment in families of children with developmental delays: construct and concurrent validities. Am J Ment Retard 98:551–566
Axia V, Weisner TS (2002) Infant stress reactivity and home cultural ecology of Italian infants and families. Infant Behav Dev 140:1–14
Frare M, Axia V, Battistella PA (2002) Quality of life, coping strategies and daily routines in children with primary headache. Headache 42:953–962
Scrimin S, Axia G, Tremolada M, Pillon M, Capello F, Zanesco L (2005) Conversational strategies with parents of newly diagnosed leukaemic children: an analysis of 4880 conversational turns. Support Care Cancer 13:287–294
Kazak AE, Barakat LP, Meeske K et al (1997) Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers. J Consult Clin Psychol 65:120–129
Smith JA, Harrè R, Van Langenhove L (1995) Rethinking methods in psychology. Sage, London
Yeh CH (2002) Health-related quality of life in pediatric patients with cancer. A structural equation approach with the Roy Adaptation model. Cancer Nurs 25:74–80
Davies B, Whitsett SF, Bruce A, McCarthy P (2002) A typology of fatigue in children with cancer. J Pediatr Oncol Nurs 19:12–21
Super C, Harkness S (1986) The developmental niche: a conceptualization at the interface of child and culture. Int J Behav Dev 9:1–25
Axia V, Scrimin S, Tremolada M (2004) Basi teoriche per la psico-oncologia pediatrica. In: Axia G (ed) Elementi di Psico-oncologia Pediatrica. Carrocci, Rome, p 30
Hoekstra-Weebers JE, Jaspers JP, Kamps WA, Klip EC (2000) Factors contributing to the psychological adjustment of parents of paediatric cancer patients. In: Baider L, Cooper CL, Kaplan De-Nour A (eds) Cancer and the family, 2nd edn. Wiley, Hoboken, pp 257–272
Aldridge AA, Roesch SC (2007) Coping and adjustment in children with cancer: a meta-analytic study. J Behav Med 30:115–129
Earle EA, Eiser C (2007) Children's behaviour following diagnosis of acute lymphoblastic leukaemia: a qualitative longitudinal study. Clin Child Psychol Psychiatry 12:281–293
Young B, Dixon-Woods M, Findlay M, Heney D (2002) Parenting in a crisis: conceptualising mothers of children with cancer. Soc Sci Med 55:1835–1847
Earle EA, Clarke SA, Eiser C, Sheppard L (2007) ‘Building a new normality’: mothers' experiences of caring for a child with acute lymphoblastic leukaemia. Child Care Health Dev 33:155–160
Acknowledgments
This work was supported by a grant from Foundation “City of Hope”, and it was in memory of Professor Vanna Axia.
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Tremolada, M., Bonichini, S., Altoè, G. et al. Parental perceptions of health-related quality of life in children with leukemia in the second week after the diagnosis: a quantitative model. Support Care Cancer 19, 591–598 (2011). https://doi.org/10.1007/s00520-010-0854-5
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DOI: https://doi.org/10.1007/s00520-010-0854-5