Pediatric cancer survivors are a growing group whose needs extend to multiple contexts and systems. Most studies dealing with the emotional sequelae of childhood cancer have neglected patients' and parents' perspectives. Few have dealt with issues faced by the treatment team. Our research constitutes the first attempt to gather a collective view of such experience in Puerto Rico. Using a phenomenological approach, in-depth interviews were conducted with acute lymphoblastic leukemia (ALL) patients, their mothers, and their oncology treatment team (18) at a children's hospital in Puerto Rico. Analysis followed the model proposed by Strauss and Corbin. In this article, findings directly associated with the cultural aspects of the Puerto Rican cancer experience are presented, including the mother's role—devotion and abandonment; the father's role—masculine vulnerability; and the family paradox. Mothers' protagonism was the central theme that emerged from these three categories.
American Cancer Society (2007). Cancer facts and figures. Atlanta, GA: Author.
2.
Azis, N.M., & Rowland, J.H. (2002). Cancer survivorship research among ethnic minority and medically underserved groups. Oncology Nursing Forum, 29(5), 789-801.
3.
Ball, S.J., Bignold, S., & Cribb, A. (1996). Death and the disease: Inside the culture of childhood cancer. In G. Howarth & P. C. Jupp (Eds.), Contemporary issues in the sociology of death, dying and disposal (pp. 151-164). New York: Palgrave Macmillan.
4.
Bluebond-Langner, M., Belasco, J., Silber, J., & Goldman, A. (2003). Decision making for children with cancer when cure is not likely: Scope of the problem and recommendations for clinical practice. Retrieved August 4, 2004, from http://children .camden.rutgers.edu/PDFfiles/MED%20DECIS%20MKG-2003 .pdf
5.
Charmaz, K. (2000). Grounded theory: Objective and constructivist methods. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 509-535). Thousand Oaks, CA: Sage.
6.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage.
7.
Chesler, M.A., & Parry, C. (2001). Gender roles and/or styles in crisis: An integrative analysis of the experiences of fathers of children with cancer. Qualitative Health Research, 11, 363-384.
8.
Children's Oncology Group (2004). The Children's Oncology Group long term follow-up guidelines for survivors of childhood, adolescents, and young adult cancers. Retrieved November 19, 2004, from www.survivorshipguidelines.org
9.
Clarke, J.N., & Fletcher, P. (2003). Communication issues faced by parents who have a child diagnosed with cancer. Journal of Pediatric Oncology Nursing, 20(4), 175-191.
10.
Davis, A., & Jones, L. (1996). Environmental constraints on health: Listening to children's views. Health Education Journal, 55, 363-374.
11.
Decker, C., Phillips, C.R., & Haase, J.E. (2004). Information needs of adolescents with cancer. Journal of Pediatric Oncology Nursing, 21(6), 327-334.
12.
Dixon-Woods, M., Young, B., & Heney, D. (2002). Childhood cancer and users' views: A critical perspective. European Journal of Cancer Care, 11(3), 173-177.
13.
Eiser, C. (1998). Long-term consequences of childhood cancer. Journal of Child Psychology and Psychiatry, 39, 621-633.
14.
Grootenhuis, M.A., & Last, B. (2001). Children with cancer with different survival perspectives: Defensiveness, control strategies, and psychological adjustment. Psycho-Oncology, 10, 305-314.
15.
Hare, M.L., Hinds, P.S., & Stewart, J.L. (2004). Moving the research agenda forward for children and adolescents with cancer. Journal of Pediatric Oncology Nursing, 21(3), 186-188.
16.
Hughes, P.M., & Lieberman, S. (1990). Troubled parents: Vulnerability and stress in childhood cancer. British Journal of Medical Psychology, 63, 53-64.
17.
Hupcey, J.E. (1998). Clarifying the social support theory-research linkage. Journal of Advanced Nursing, 27(6), 1231-1241.
18.
Janes-Hodder, H., & Keene, N. (2002). Childhood cancer: A parent's guide to solid tumor cancers. Beijing: O'Reilly.
19.
Kane, J.R., Brown-Hellsten, M., & Coldsmith, Rev. A. (2004). Human suffering: The need for relationship-based research in pediatric end-of-life care. Journal of Pediatric Oncology Nursing, 21(3), 180-185.
20.
Kazak, A.E. (1994). Implications of survival: Pediatric oncology patients and their families. In D. J. Bearison & R. K. Mulhern (Eds.), Pediatric psychooncology: Psychological perspectives on children with cancer (pp. 171-192). New York: Oxford University Press.
21.
Koocher, G.P. (1994). Foreword. In D. J. Bearison & R. K. Mulhern (Eds.), Pediatric psychooncology: Psychological perspectives on children with cancer (pp. ix-x). New York: Oxford University Press.
22.
Lam, N.J., & Grossman, F.K. (1997). Resiliency and adult adaptation in women with and without self-reported histories of child sexual abuse. Journal of Traumatic Stress, 10(2), 175-196.
23.
Masera, G., Chesler, M.A., Jankovic, M., Albin, A.R., Benarush, M.W., Breatnach, F., et al. (1997). SIOP working committee on psychosocial issues in pediatric oncology: Guidelines for communications of the diagnosis . Medical and Pediatric Oncology, 28, 382-385.
24.
Minuchin, S. (1974). Families and family therapy. Cambridge, Boston: Harvard University Press.
25.
Nelson, A.M. (2002). A metasynthesis: Mothering other-than-normal children . Qualitative Health Research, 12, 515-530.
26.
Paley, J. (1997). Husserel, phenomenology and nursing. Journal of Advanced Nursing, 26, 187-193.
27.
Parry, C., & Chesler, M.A. (2005). Thematic evidence of psychosocial thriving in childhood cancer survivors. Qualitative Health Research, 15, 1055-1073.
28.
Patterson, J.M., Holm, K.E., & Gurney, J.B. (2004). The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors. Psycho-Oncology, 13, 390-407.
29.
Ponterotto, J.G. (2005). Qualitative research in counseling psychology: A primer on research paradigms and philosophy of science. Journal of Counseling Psychology, 52(2), 126-136.
30.
Reay, D., Bignold, S., Ball, S.J., & Cribb, A. (1998). "He just had a different way of showing it": Gender dynamics in familes coping with childhood cancer. Journal of Gender Studies, 7(1), 39-52.
31.
Ries, L.A., Smith, M.A., Gurney, J.G., Linet, M., Tamra, T., Young, J.L., et al. (1999). Cancer incidence and survival among children and adolescents: United States SEER Program 1975-1995. Bethesda, MD: National Cancer Institute.
32.
Rivero-Vergne, A. (1996). El impacto del diagnóstico de VIH positivo en el proceso de toma de decisiones sobre su rol de madres en un grupo de mujeres puertorriqueñas [The impact of an HIV-positive diagnosis in the decision making process as mothers of a group of Puerto Rican women]. Ponencia a la Facultad del Recinto Metropolitano de la Universidad Interamericana en el XXV Congreso Interamericano de Psicología [Proceedings of the XXV Interamerican Psychology Congress] (pp. 75-86).
33.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage.
34.
Vance, Y.H., Morse, R.C., Jenney, M.E., & Eiser, C. (2001). Issues in measuring quality of life in childhood cancer: Measures, proxies, and parental mental health. Journal of Child Psychology & Psychiatry & Allied Disciplines, 42, 661-667.
35.
Wilkins, K.L., & Woodgate, R.L. (2005). A review of qualitative research on the childhood cancer experience from the perspective of siblings: A need to give them a voice. Journal of Pediatric Oncology Nursing, 22, 305-319.
36.
Wolfe, J.W., Grier, H.E., Klar, N., Levin, S.B., Ellenbogen, J.M., Salem-Shatz, S., et al. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342(5), 326-333.
37.
Young, B., Dixon-Woods, M., Findlay, M., & Heney, D. (2002). Parenting in a crisis: Conceptualising mothers of children with cancer. Social Science & Medicine, 55(10), 1835-1847.
