Abstract
Purpose
Research looking at the health of parents of children with cancer typically uses outcome measures focused on symptoms of anxiety, depression, or post-traumatic stress. Our team builds on this literature to provide a more comprehensive understanding of the health impact of caregiving.
Methods
Interviews were conducted with 79 Canadian parents of children with cancer at least 6 months post-diagnosis. Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. Interviewing continued until no new themes emerged.
Results
Parents described health concerns as including sleep disturbance, daytime fatigue, anxiety, depression, social isolation, and changes in social roles. Parents described the positive impacts of caregiving as including gaining a greater appreciation for child and family and developing compassion, empathy, patience, inner strength, and new perspectives on life.
Conclusion
Parents of children with cancer can experience a range of health problems due to the emotional impact of a cancer diagnosis and the intensive and often prolonged nature of treatment and aftercare. Given the central role parents play as caregivers, it is crucial to understand the health impact of caregiving so that supportive interventions can be implemented as necessary.
Similar content being viewed by others
References
Ries, L. A. G., Melbert, D., Krapcho, M., Stinchcomb, D. G., Howlader, N., Horner, M. J., et al. (2011). SEER cancer statistics review, 1975–2004 (online) http://seer.cancer.gov/. Accessed 10 September 2011.
Grootenhuis, M. A., & Last, B. F. (1997). Adjustment and coping by parents of children with cancer: A review of the literature. Supportive Care in Cancer, 5(6), 466–484.
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 well-being. Supportive Care in Cancer, 15(7), 807–818.
Vrijmoet-Wiersma, C. M. J., van Klink, J. M. M., Kolk, A. M., Koopman, H. M., Ball, L. M., & Egeler, R. M. (2010). Assessment of parental psychological stress in pediatric cancer: A review. Journal of Pediatric Psychology, 33(7), 694–706.
Rothman, M. L., Beltran, P., Cappelleri, J. C., & Lipscomb, J. (2007). Patient-reported outcomes: Conceptual issues. Value in Health, 10(Suppl 2), S66–S75.
Fayers, P. M., & Machin, D. (2000). Quality of life: Assessment, analysis, and interpretation. New York: Wiley.
Klassen, A., Klaassen, R., Dix, D., Pritchard, S., O’Donnell, M., Scott, A., et al. (2008). Impact of caring for a child with cancer on parent’s health-related quality of life. Journal of Clinical Oncology, 26(36), 5884–5889.
Eiser, C., Eiser, J. R., & Stride, C. B. (2005). Quality of life in children newly diagnosed with cancer and their mothers. Health Qual Life Outcomes, 3, 29.
Yamazaki, S., Sokejima, S., Mizoue, T., Eboshida, A., & Fukuhara, S. (2005). Health related quality of life of mothers of children with leukemia in Japan. Quality of Life Research, 14(4), 1079–1085.
Patterson Kelly, K., & Ganong, L. (2011). Moving to place childhood cancer treatment decision making in single-parent and repartnered family structures. Qualitative Health Research, 21(3), 349–364.
Huang, I., Mu, P., & Chiou, T. (2008). Parental experience of family resources in single-parent families having a child with cancer. Journal of Clinical Nursing, 17(20), 2741–2749.
Johns, A. L., Oland, A. A., Katz, E. R., Sahler, O. J., Askins, M. A., Butler, R. W., et al. (2009). Qualitative analysis of the role of culture in coping themes of Latina and European American mothers of children with cancer. Journal of Pediatric Oncology Nursing, 26(3), 167–175.
Leavitt, M., Martinson, I. M., Liu, C. Y., Armstrong, V., Hornberger, L., Zhang, J. Q., et al. (1999). Common themes and ethnic differences in family caregiving the first year after diagnosis of childhood cancer: Part II. Journal of Pediatric Nursing, 14(2), 110–122.
Crom, D. B. (1999). The experience of South American mothers who have a child being treated for a malignancy in the United States. Journal of Pediatric Oncology Nursing, 12(3), 104–112.
Untalan, F. F., Woodruff, K., Liao, M., & Hardy, C. (2004). Stressors associated with Pacific Islands children diagnosed with cancer and severe blood disorders. Journal of Pediatric Oncology Nursing, 21(1), 40–50.
Klassen. A. F., Gulati, S., Watt, L., Banerjee, A. T., Sung, L., Klaassen, R. J., et al. (2011). Immigrant to Canada, newcomer to childhood cancer: a qualitative study of challenges faced by immigrant parents. Psychooncology 2011, March 21. [Epub ahead of print].
Watt, L., Gulati, S., Shaw, N. T., Sung, L., Dix, D., Poureslamin, I., et al. (2011). Perceptions about complementary and alternative medicine use among Chinese immigrant parents of children with cancer. Support Care Cancer. 2011 Feb 12 [Epub ahead of print].
Gulati, S., Watt, L., Shaw, N., Sung, L., Poureslami, I. M., Klaassen, R., et al. (2011). Communication and language challenges experienced by Chinese and South Asian immigrant parents of children with cancer in Canada: Implications for health services delivery. Pediatr Blood Cancer. 2011 Mar 2. [Epub ahead of print].
Banerjee, A. T., Watt, L., Gulati, S., Sung, L., Dix, D., Klaassen, R., et al. (2011). Cultural beliefs and coping strategies related to childhood cancer: The perceptions of South Asian immigrant parents in Canada. Journal of Pediatric Oncology Nursing, 28(3), 169–178.
Meadows, L. M., Thurston, W. E., & Melton, C. (2001). Immigrant women’s health. Social Science and Medicine, 52(9), 1451–1458.
Chard, J., Badets, J., & Howatson-Leo, L. (2000). Immigrant women. Statistics Canada. In Women in Canada 2000: A gender-based statistical report. Target groups project. Ottawa: Ministry of Industry.
Burström, B., Diderichsen, F., Shouls, S., & Whitehead, M. (1999). Lone mothers in Sweden: Trends in health and socioeconomic circumstances, 1979–1995. Journal of Epidemiology and Community Health, 53(12), 750–756.
Crosier, T., Butterworth, P., & Rodgers, B. (2007). Mental health problems among single and partnered mothers: The role of financial hardship and social support. Social Psychiatry and Psychiatric Epidemiology, 42(1), 6–13.
Franz, M., Lensche, H., & Schmitz, N. (2003). Psychological distress and socioeconomic status in single mothers and their children in a German city. Social Psychiatry and Psychiatric Epidemiology, 38(2), 59–68.
Statistics Canada. (2006). Census: Immigration in Canada: A portrait of the foreign-born population, 2006 Census: Highlights. Catalogue no. 97-557-XIE2006001, 2010. http://www12.statcan.ca/census-recensement/2006/as-sa/97-557/p1-eng.cfm. Accessed 24 March 2011.
Statistics Canada. (2006). Census: Canada’s ethnocultural portrait: The changing mosaic. Statistics Canada Catalogue no. 97-562-X. Ottawa, 2010. http://www12.statcan.gc.ca/english/census06/analysis/ethnicorigin/pdf/97-562-XIE2006001.pdf. Accessed 24 March 2011.
http://www12.statcan.ca/english/census06/analysis/famhouse/cenfam3.cfm. Accessed 24 March 2011.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage Publications.
Mills, J., Bonner, A., & Francis, K. (2006). Adopting a constructivist approach to grounded theory: Implications for research design. International Journal of Nursing Practice, 12(1), 8–13.
Mills, J., Bonner, A., & Francis, K. (2006). The development of constructivist grounded theory. Int J Qual Meth, 5(1), 1–10.
Qualitative Solutions Research International. (2008). NVivo 8 [Software]. Australia: QSR International.
Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19 June–22 July 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.
Stenberg, U., Ruland, C., & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-oncology, 19(10), 1013–1025.
Cohen, C. A., Colantonio, A., & Vernich, L. (2002). Positive aspects of caregiving: Rounding out the caregiver experience. International Journal of Geriatric Psychiatry, 17(2), 184–188.
Hasting, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal of Mental Retardation, 107(2), 116–127.
Mullins, J. B. (1987). Authentic voices from parents of exceptional children. Family Relations, 36, 30–33.
Lasch, K. E., Marquis, P., Vigneuz, M., Abetz, L., Armould, B., Bayliss, M., et al. (2010). PRO development: Rigorous qualitative research as crucial foundation. Quality of Life Research, 19(8), 1087–1096.
Acknowledgments
This research was conducted with support from C17 and funded by Childhood Cancer Canada Foundation and the Canadian Cancer Society (grant #18043 and grant #020398). Anne Klassen is a recipient of a CIHR career award.
Conflict of interest
None.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Klassen, A.F., Gulati, S., Granek, L. et al. Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res 21, 1595–1605 (2012). https://doi.org/10.1007/s11136-011-0072-8
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-011-0072-8