Skip to main content
SpringerLink
Log in

Parents’ Perceptions About Their Child’s Illness in Pediatric Cancer: Links with Caregiving Burden and Quality of Life

  • Original Paper
  • Published:
Journal of Child and Family Studies Aims and scope Submit manuscript

Abstract

This study examined the direct and indirect links, via the caregiving burden, between parents’ perceptions about the severity of their child’s illness and its interference in his or her life and the parents’ quality of life (QoL). The participants were 277 parents of children with malignant cancer, divided into two clinical groups according to treatment status: 126 parents of children on-treatment and 151 parents of children off-treatment. Self-reported questionnaires assessed parents’ perceptions of illness severity and interference in the child’s life, caregiving burden and QoL. Pediatric oncologists provided information about diagnosis, treatment status and intensity. Parents of children on-treatment reported more negative perceptions about the illness (severity and interference), higher levels of caregiving burden and worse QoL, when compared to parents of children off-treatment. Furthermore, parents’ perceptions about their child’s illness (severity and interference) were negatively linked to parents’ QoL through caregiving burden. Additionally, the link between caregiving burden and parents’ QoL was moderated by child treatment status, with stronger associations found for parents of children on-treatment. This study’s findings are discussed in terms of their relevant implications for intervention with families in the pediatric cancer context.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3
Fig. 4

Similar content being viewed by others

References

  • Alderfer, M. A., & Kazak, A. E. (2006). Family issues when a child is on treatment for cancer. In R. Brown (Ed.), Pediatric hematology/oncology: A biopsychosocial approach (pp. 53–74). New York: Oxford University Press.

    Google Scholar 

  • Anderzén-Carlsson, A., Kihlgren, M., Svantesson, M., & Sørlie, V. (2007). Children’s fear as experienced by the parents of children with cancer. Journal of Pediatric Nursing, 22(3), 233–244. doi:10.1016/j.pedn.2007.03.003.

    Article  PubMed  Google Scholar 

  • Boman, K. K., Lindahl, A., & Björk, O. (2003). Disease-related distress in parents of children with cancer at various stages after the time of diagnosis. Acta Oncologica, 42(2), 137–146. doi:10.1080/02841860310004995.

    Article  PubMed  Google Scholar 

  • Boman, K. K., Viksten, J., Kogner, P., & Samuelsson, U. (2004). Serious illness in childhood: The different threats of cancer and diabetes from a parent perspective. The Journal of Pediatrics, 145(3), 373–379. doi:10.1016/j.jpeds.2004.05.043.

    Article  PubMed  Google Scholar 

  • Carona, C., Crespo, C., & Canavarro, M. C. (2013). Similarities amid the difference: Caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy. Research in Developmental Disabilities, 34(3), 882–893. doi:10.1016/j.ridd.2012.12.004.

    Article  PubMed  Google Scholar 

  • Carona, C., Faria-Morais, T., Nazaré, B., & Canavarro, M. C. (2008). Escalas de desgaste do cuidador- Revistas [Caregiver Burden Scales - Revised]. Unpublished manuscript.

  • Crespo, C., Carona, C., Silva, N., Canavarro, M. C., & Dattilio, F. (2011). Understanding the quality of life for parents and their children who have asthma: Family resources and challenges. Contemporary Family Therapy, 33(2), 179–196. doi:10.1007/s10591-011-9155-5.

    Article  Google Scholar 

  • Dahlquist, L. M., Czyzewski, D. I., & Jones, C. L. (1996). Parents of children with cancer: A longitudinal study of emotional distress, coping style, and marital adjustment two and twenty months after diagnosis. Journal of Pediatric Psychology, 21(4), 541–554. doi:10.1093/jpepsy/21.4.541.

    Article  PubMed  Google Scholar 

  • Dockerty, J. D., Williams, S. M., McGee, R., & Skegg, D. C. G. (2000). Impact of childhood cancer on the mental health of parents. Medical and Pediatric Oncology, 35(5), 475–483. doi:10.1002/1096-911X(20001101)35:5<475:AID-MPO6>3.0.CO;2-U.

    Article  PubMed  Google Scholar 

  • Eiser, C., Eiser, J. R., & Stride, C. B. (2005). Quality of life in children newly diagnosed with cancer and their mothers. Health and Quality of Life Outcomes, 3(29), 1–5. doi:10.1186/1477-7525-3-29.

    Google Scholar 

  • Fletcher, P. C. (2010). My child has cancer: The costs of mothers’ experiences of having a child with pediatric cancer. Issues in Comprehensive Pediatric Nursing, 33(3), 164–184. doi:10.3109/01460862.2010.498698.

    Article  PubMed  Google Scholar 

  • Grootenhuis, M. A., & Last, B. F. (1997a). Adjustment and coping by parents of children with cancer: A review of the literature. Supportive Care in Cancer, 5(6), 466–484. doi:10.1007/s005200050116.

    Article  PubMed  Google Scholar 

  • Grootenhuis, M. A., & Last, B. F. (1997b). Parents’ emotional reactions related to different prospects for the survival of their children with cancer. Journal of Psychosocial Oncology, 15(1), 43–62. doi:10.1300/J077v15n01_04.

    Article  Google Scholar 

  • Hayes, A. F. (2013). Introduction to mediation, moderation, and conditional process analysis. New York: Guilford Press.

    Google Scholar 

  • Hung, J. W., Wu, Y.-H., & Yeh, C.-H. (2004). Comparing stress levels of parents of children with cancer and parents of children with physical disabilities. Psycho-Oncology, 13(12), 898–903. doi:10.1002/pon.868.

    Article  PubMed  Google Scholar 

  • Jose, P. (2008). ModGraph-I: A programme to compute cell means for the graphical display of moderational analyses: The internet version, Version 2.0. Retrieved from http://www.victoria.ac.nz/psyc/paul-jose-files/modgraph/.

  • Kazak, A. (1989). Families of chronically ill children: A systems and social ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57(1), 25–30. doi:10.1037/0022-006X.57.1.25.

    Article  PubMed  Google Scholar 

  • Kazak, A. E., & Barakat, L. P. (1997). Brief report: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. Journal of Pediatric Psychology, 22(5), 749–758. doi:10.1093/jpepsy/22.5.749.

    Article  PubMed  Google Scholar 

  • Kazak, A. E., DeRosa, B. W., Schwartz, L. A., Hobbie, W., Carlson, C., Ittenbach, R. F., et al. (2010). Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. Journal of Clinical Oncology, 28(12), 2002–2007. doi:10.1200/jco.2009.25.9564.

    Article  PubMed Central  PubMed  Google Scholar 

  • Kazak, A. E., Hocking, M. C., Ittenbach, R. F., Meadows, A. T., Hobbie, B., DeRosa, B. W., et al. (2011). A revision of the intensity of treatment rating scale: Classifying the intensity of pediatric cancer treatment. Pediatric Blood Cancer, 59(1), 96–99. doi:10.1002/pbc.23320.

    Article  PubMed Central  PubMed  Google Scholar 

  • Kazak, A. E., Rourke, M. T., & Navsaria, N. (2009). Families and other systems in pediatric psychology. In M. Roberts & R. Steele (Eds.), Handbook of pediatric psychology (pp. 656–671). New York: Guilford.

    Google Scholar 

  • Klassen, A. F., Klaassen, R., Dix, D., Pritchard, S., Yanofsky, R., O’Donnell, M., et al. (2008). Impact of caring for a child with cancer on parents’ health-related quality of life. Journal of Clinical Oncology, 26(36), 5884–5889. doi:10.1200/JCO.2007.15.2835.

    Article  PubMed  Google Scholar 

  • Klassen, A. F., Raina, P., McIntosh, C., Sung, L., Klaassen, R. J., O’Donnell, M., et al. (2011). Parents of children with cancer: Which factors explain differences in health-related quality of life. International Journal of Cancer, 129(5), 1190–1198. doi:10.1002/ijc.25737.

    Article  Google Scholar 

  • Klassen, A., Raina, P., Reineking, S., Dix, D., Pritchard, S., & O’Donnell, M. (2007). Developing a literature base to understand the caregiving experience of parents of children with cancer: A systematic review of factors related to parental health and wellbeing. Supportive Care in Cancer, 15(7), 807–818.

    Article  PubMed  Google Scholar 

  • Kylmä, J., & Juvakka, T. (2007). Hope in parents of adolescents with cancer: Factors endangering and engendering parental hope. European Journal of Oncology Nursing, 11(3), 262–271. doi:10.1016/j.ejon.2006.06.007.

    Article  PubMed  Google Scholar 

  • Litzelman, K., Catrine, K., Gangnon, R., & Witt, W. P. (2011). Quality of life among parents of children with cancer or brain tumors: The impact of child characteristics and parental psychosocial factors. Quality of Life Research, 20(8), 1261–1269. doi:10.1007/s11136-011-9854-2.

    Article  PubMed Central  PubMed  Google Scholar 

  • McCaffrey, C. N. (2006). Major stressors and their effects on the well-being of children with cancer. Journal of Pediatric Nursing, 21(1), 59–66. doi:10.1016/j.pedn.2005.07.003.

    Article  PubMed  Google Scholar 

  • McGrath, P., Paton, M. A., & Huff, N. (2005). Beginning treatment for pediatric acute myeloid leukemia: The family connection. Issues in Comprehensive Pediatric Nursing, 28(2), 97–114. doi:10.1080/01460860590950881.

    Article  PubMed  Google Scholar 

  • Mercer, M., & Ritchie, J. A. (1997). Tag-team parenting of children with cancer. Journal of Pediatric Nursing, 12(6), 331–341. doi:10.1016/S0882-5963(97)80059-0.

    Article  PubMed  Google Scholar 

  • Michaud, P.-A., Suris, J. C., & Viner, R. (2007). The adolescent with a chronic condition: Epidemiology, developmental issues and health care provision. Geneva: World Health Organization.

    Google Scholar 

  • Montgomery, R. J. V., & Kosloski, K. (2006). The league of experienced family caregivers: Measure development. Milwaukee, WI: University of Wisconsin-Milwaukee.

    Google Scholar 

  • Othman, A., Mohamad, N., Hussin, Z. A., & Blunden, S. (2011). Factors related to parental well being in children with cancer. International Proceedings of Economics Development & Research, 5(1), 255–260.

    Google Scholar 

  • Patterson, J. M., Holm, K. E., & Gurney, J. G. (2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho-oncology, 13(6), 390–407. doi:10.1002/pon.761.

    Article  PubMed  Google Scholar 

  • Pereira, M., Melo, C., Gameiro, S., & Canavarro, M. C. (2011). Estudos psicométricos da versão em português europeu do índice de qualidade de vida EUROHIS-QOL-8 [Psychometric studies of the European Portuguese version of the quality of life index EUROHIS-QOL-8]. Laboratório de Psicologia, 9, 109–123.

    Google Scholar 

  • Preacher, K. J., & Hayes, A. F. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behavior Research Methods, 40(3), 879–891. doi:10.3758/BRM.40.3.879.

    Article  PubMed  Google Scholar 

  • Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., et al. (2004). Caregiving process and caregiving burden: Conceptual models to guide research and practice. BioMed Central Pediatrics, 4(1), 1–13. doi:10.1186/1471-2431-4-1.

    Article  PubMed Central  PubMed  Google Scholar 

  • Robinson, K. E., Gerhardt, C. A., Vannatta, K., & Noll, R. B. (2007). Parent and family factors associated with child adjustment to pediatric cancer. Journal of Pediatric Psychology, 32(4), 400–410. doi:10.1093/jpepsy/jsl038.

    Article  PubMed  Google Scholar 

  • Rolland, J. S. (1987). Family illness paradigms: Evolution and significance. Family Systems Medicine, 5(4), 467–486. doi:10.1093/jpepsy/jsl038.

    Article  Google Scholar 

  • Rolland, J. S. (2012). Mastering family challenges in serious illness and disability. In F. Walsh (Ed.), Normal family processes (pp. 452–482). New York: The Guilford Press.

    Google Scholar 

  • Sameroff, A. J. (2009). The transactional model of development: How children and contexts shape each other. Washington, DC: American Psychological Association.

    Book  Google Scholar 

  • Santos, S., Crespo, C., Canavarro, M. C., & Pinto, A. (2014). Versão portuguesa da escala de classificação da intensidade do tratamento 3.0 no cancro pediátrico [Portuguese version of intensity of treatment rating scale 3.0 in pediatric cancer] (in preparation).

  • Schmidt, S., Mühlan, H., & Power, M. (2006). The EUROHIS-QOL 8-item index: Psychometric results of a cross-cultural field study. European Journal of Public Health, 16(4), 420–428. doi:10.1093/eurpub/cki155.

    Article  PubMed  Google Scholar 

  • Simões, M. R. (1994). Investigações no âmbito da aferição nacional do teste das Matrizes Progressivas de Raven [Raven’s Progressive Matrices: Aferition studies]. Unpublished Doctoral Dissertation, Faculdade de Psicologia e de Ciências da Educacão, Universidade de Coimbra, Coimbra, Portugal.

  • Sobo, E. J. (2004). Good communication in pediatric cancer care: A culturally-informed research agenda. Journal of Pediatric Oncology Nursing, 21(3), 150–154. doi:10.1177/1043454204264408.

    Article  Google Scholar 

  • Turner-Henson, A., Holaday, B., & Swan, J. H. (1992). When parenting becomes caregiving: Caring for the chronically ill child. Family & Community Health, 15(2), 19–30. doi:10.1097/00003727-199207000-00006.

    Article  Google Scholar 

  • von Essen, L., Sjöden, P. O., & Mattsson, E. (2004). Swedish mothers and fathers of a child diagnosed with cancer. Acta Oncologica, 43(5), 474–479. doi:10.1080/02841860410029348.

    Article  Google Scholar 

  • Vrijmoet-Wiersma, C. M. J., van Klink, J. M. M., Kolk, A. M., Koopman, H. M., Ball, L. M., & Egeler, R. M. (2008). Assessment of parental psychological stress in pediatric cancer: A review. Journal of Pediatric Psychology, 33(7), 694–706. doi:10.1093/jpepsy/jsn007.

    Article  PubMed  Google Scholar 

  • Witt, W. P., Litzelman, K., Wisk, L. E., Spear, J. A., Catrine, K., Levin, N., et al. (2010). Stress-mediated quality of life outcomes in parents of childhood cancer and brain tumor survivors: A case–control study. Quality of Life Research, 19(7), 995–1005. doi:10.1007/s11136-010-9666-9.

    Article  PubMed Central  PubMed  Google Scholar 

  • Wolfe-Christensen, C., Mullins, L. L., Fedele, D. A., Rambo, P. L., Eddington, A., & Carpentier, M. Y. (2010). The relation of caregiver demand to adjustment outcomes in children with cancer: The moderating role of parenting stress. Children’s Health Care, 39(2), 108–124. doi:10.1080/02739611003679881.

    Article  Google Scholar 

  • Yeh, C.-H. (2002). Life experience of Taiwanese adolescents with cancer. Scandinavian Journal of Caring Science, 16(3), 232–239. doi:10.1046/j.1471-6712.2002.00066.x.

    Article  Google Scholar 

  • Young, B., Dixon-Woods, M., Findlay, M., & Heney, D. (2002). Parenting in a crisis: Conceptualising mothers of children with cancer. Social Science and Medicine, 55(10), 1835–1847. doi:10.1016/S0277-9536(01)00318-5.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors would like to thank the families and health staff of the pediatric wards of the Portuguese Institute of Oncology (IPO-Porto), Pediatric Oncology Unit—Pediatric Department, Centro Hospitalar e Universitário de Coimbra, Coimbra, and São João Hospital.

Author information

Authors and Affiliations

  1. Faculty of Psychology and Educational Sciences, University of Coimbra, Rua do Colégio Novo, Apartado 6153, 3001-802, Coimbra, Portugal

    Ágata Salvador, Carla Crespo, Ana Rita Martins, Susana Santos & Maria Cristina Canavarro

Authors
  1. Ágata Salvador
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Carla Crespo
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Ana Rita Martins
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Susana Santos
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Maria Cristina Canavarro
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Ágata Salvador.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Salvador, Á., Crespo, C., Martins, A.R. et al. Parents’ Perceptions About Their Child’s Illness in Pediatric Cancer: Links with Caregiving Burden and Quality of Life. J Child Fam Stud 24, 1129–1140 (2015). https://doi.org/10.1007/s10826-014-9921-8

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10826-014-9921-8

Keywords

Search

Navigation