Adult childhood cancer survivors’ narratives of managing their health: the unexpected and the unresolved
Tóm tắt
Currently, 80 % of children diagnosed with cancer will be cured. However, many of these survivors go on to develop long-term health problems or late effects related to their previous cancer and therapy and require varying degrees of lifelong follow-up care. The purpose of this study was to identify the different ways that adult survivors of childhood cancer manage their medical and psychological challenges. Data from in-depth interviews with 30 adult survivors of a childhood cancer (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, thematic narrative analysis methods. The survivors had not expected the medical, psychological, and social challenges that arose over time and that often remained unresolved. Five narrative themes revealed distinct ways that survivors managed their health challenges: (1) trying to forget cancer, (2) trusting the system to manage my follow-up care, (3) being proactive about my health, (4) stumbling from one problem to the next, and (5) struggling to find my way. Variation exists in the ways in which childhood cancer survivors frame their health, their perceived significance of health challenges, strategies used to manage health, interactions with healthcare professionals and the health system, and parental involvement. This research provides novel insights that can be used to inform the development of patient-centered health services that promote the assessment and tailoring of care to the diverse ways survivors enact their agency, as well as their psychoeducational coping styles, therapeutic relationship needs, and information needs.
Tài liệu tham khảo
Canadian Cancer Society. Canadian Cancer Statistics special topic: cancer in adolescents and young adults (ages 15–29 years). Toronto, ON. http://www.cancer.ca/Canadawide/About%20cancer/Cancer%20statistics/~/media/CCS/Canada%20wide/Files%20List/English%20files%20heading/pdf%20not%20in%20publications%20section/Stats%202009E%20Special%20Topics.ashx;.
Ward E, DeSantis C, Robbins A, Kohler B, Jemal A. Childhood and adolescent cancer statistics, 2014. CA-Cancer J Clin. 2014;64:83–103.
Armstrong GT, Kawashima T, Leisenring W, Stratton K, Stovall M, Hudson MM, et al. Aging and risk of severe, disabling, life-threatening, and fatal events in the Childhood Cancer Survivor Study. J Clin Oncol. 2014;32:1218–27.
Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309:2371–81.
Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355:1572.
Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, et al. Cause-specific late mortality among 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2008;100:1368–79.
Friedman DL, Whitton J, Leisenring W, Mertens AC, Hammond S, Stovall M, et al. Subsequent neoplasms in 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2010;102:1083–95.
Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, et al. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA. 2003;290:1583–92.
Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, et al. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarl. 2008;17:435–46.
Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, et al. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J Clinic Oncol. 2009;27:2396–404.
Oeffinger KC, Hudson MM. Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. CA-Cancer J Clin. 2004;54:208–36.
National Cancer Policy Board Childhood Cancer Survivorship: improving care and quality of life. 2003.
Hewitt ME, Greenfield S, Stovall E. From cancer patient to cancer survivor: lost in transition. National Academy Press, 2006.
Scottish Intercollegiate Guidelines Network (SIGN). Long term follow up of survivors of childhood cancer. 2013; 132.
Landier W, Wallace WHB, Hudson MM. Long-term follow-up of pediatric cancer survivors: education, surveillance, and screening. Pediatr Blood Cancer. 2006;46:149–58.
Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2:61–70.
Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2008;26:4401–9.
Guilcher G, Fitzgerald C, Pritchard S. A questionnaire based review of long-term follow-up programs for survivors of childhood cancer in Canada. Pediatr Blood Cancer. 2009;52:113–5.
Ristovski-Slijepcevic S, Barr R, Bernstein M, Nathan PC. A cross-Canada survey of clinical programs for the care of survivors of cancer in childhood and adolescence. Pediatr Child Health. 2009;14:375.
Essig S, Skinner R, Nicolas X, Kuehni CE, Michel G. Follow-up programs for childhood cancer survivors in Europe: a questionnaire survey. PLoS ONE. 2012;7, e53201.
Cox A, Faithfull S. ‘They’re survivors physically but we want them to survive mentally as well’: health care professionals’ views on providing potential late effect information. Support Care Cancer. 2013:1–7.
Mertens AC, Cotter KL, Foster BM, Zebrack BJ, Hudson MM, Eshelman D, et al. Improving health care for adult survivors of childhood cancer: recommendations from a delphi panel of health policy experts. Health Policy. 2004;69:169–78.
Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui Y, Hayashi R, et al. Childhood cancer survivors’ knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA. 2002;287:1832–9.
Oeffinger KC. Wallace WHB Barriers to follow‐up care of survivors in the United States and the United Kingdom. Pediatr Blood Cancer. 2006;46:135–42.
Suh E, Daugherty CK, Wroblewski K, Lee H, Kigin ML, Rasinski KA, et al. General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med. 2014;160:11–7.
Nathan PC, Daugherty CK, Wroblewski KE, Kigin ML, Stewart TV, Hlubocky FJ, et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2013:1–8.
Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK. Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol. 2010;28:878–83.
Syed IA, Klassen AF, Barr R, Wang R, Dix D, Nelson M, et al. Factors associated with childhood cancer survivors’ knowledge about their diagnosis, treatment, and risk for late effects. J Cancer Surviv. 2015:1–12.
Kremer L, Mulder RL, Oeffinger KC, Bhatia S, Landier W, Levitt G, et al. A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: a report from the international late effects of Childhood Cancer Guideline Harmonization Group. Pediatr Blood Cancer. 2013;60:543–9.
Hudson MM, Tyc VL, Srivastava DK, Gattuso J, Quargnenti A, Crom DB, et al. Multi-component behavioral intervention to promote health protective behaviors in childhood cancer survivors: the protect study. Med Pediatr Oncol. 2002;39:2–1. discussion 2.
McCorkle R, Ercolano E, Lazenby M, Schulman‐Green D, Schilling LS, Lorig K, et al. Self-management: enabling and empowering patients living with cancer as a chronic illness. CA-Cancer J Clin. 2011;61:50–62.
Berg C, Hayashi RJ. Participation and self-management strategies of young adult childhood cancer survivors. OTJR: Occup, Participation Health. 2013;33:21–30.
Health Council of Canada self-management support for Canadians with chronic health conditions: a focus for primary health care. 2012.
Boydell KM, Stasiulis E, Greenberg M, Greenberg C, Spiegler B. I'll show them: the social construction of (in)competence in survivors of childhood brain tumors. J Pediatr Oncol Nurs. 2008;25:164–74.
Woodgate R. Life is never the same: childhood cancer narratives. Eur J Cancer Care. 2006;15:8–18.
Langeveld NE, Stam H, Grootenhuis MA, Last BF. Quality of life in young adult survivors of childhood cancer. Support Care Cancer. 2002;10:579–600.
Cantrell MA, Conte TM. Between being cured and being healed: the paradox of childhood cancer survivorship. Qual Health Res. 2009;19:312–22.
Prouty D, Ward-Smith P, Hutto CJ. The lived experience of adult survivors of childhood cancer. J Pediatr Oncol Nurs. 2006;23:143–51.
Tsonis M, McDougall J, Mandich A, Irwin J. Interrelated processes toward quality of life in survivors of childhood cancer: a grounded theory. Qual Report. 2012;17:1–18.
Parry C. Embracing uncertainty: an exploration of the experiences of childhood cancer survivors. Qual Health Res. 2003;13:227–46.
Drew S. ‘Having cancer changed my life, and changed my life forever’: survival, illness legacy and service provision following cancer in childhood. Chronic Illn. 2007;3:278–95.
Riessman CK. Narrative methods for the human sciences. Sage; 2008.
Creswell JW. Qualitative inquiry and research design: choosing among five approaches. Sage; 2012.
Sherwin S The politics of women's health: exploring agency and autonomy, Philadelphia, PA: Temple University Press; 1998.
Doane GH, Varcoe C. Family nursing as relational inquiry: developing health-promoting practice. Lippincott Williams & Wilkins; 2004.
Gilbar R, Gilbar O. The medical decision-making process and the family: the case of breast cancer patients and their husbands. Bioethics. 2009;23:183–92.
Donchin, A. Autonomy and interdependence: quandaries in genetic decision making. In: Catriona Mackenzie, Natalie Stoljar. Relational autonomy: feminist perspectives on autonomy, agency, and the social self, New York, New York: Oxford University Press; 2000
Rodney P, Burgess M, McPherson G, Brown H. Our theoretical landscape: a brief history of health care ethics. In: Storch J, Rodney P, Starzomski R, editors. Toward a moral horizon: Nursing ethics for leadership and practice. Toronto, ON, Canada: Pearson-Prentice Hall; 2004. p. 56–76.
Howard AF, de Bibiana JT, Smillie K, Goddard K, Pritchard S, Olson R, et al. Trajectories of social isolation in adult survivors of childhood cancer. J Cancer Surviv. 2014;8:80–93.
Ford JS, Chou JF, Sklar CA. Attendance at a survivorship clinic: impact on knowledge and psychosocial adjustment. J Cancer Surviv. 2013;7:535–43.
Fagerlin A, Zikmund-Fisher BJ, Ubel PA. Helping patients decide: ten steps to better risk communication. J Natl Cancer Inst. 2011;103:1436–43.
Zebrack BJ, Block R, Hayes-Lattin B, Embry L, Aguilar C, Meeske KA, et al. Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer. 2013;119:201–14.
Firth ER, Davies N, Skinner R. Views of childhood cancer survivors and their families on the provision and format of a treatment summary. J Pediatr Hematol Oncol. 2013;35:193–6.
Rabin C, Simpson N, Morrow K, Pinto B. Intervention format and delivery preferences among young adult cancer survivors. Int J Behav Med. 2013;20:304–10.
Miller SM. Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers Soc Psychol. 1987;52:345.
Miller SM. Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Cancer. 1995;76:167–77.
Roussi P, Miller SM. Monitoring style of coping with cancer related threats: a review of the literature. J Behav Med. 2014;37:931–54.
Williams-Piehota P, Pizarro J, Schneider TR, Mowad L, Salovey P. Matching health messages to monitor-blunter coping styles to motivate screening mammography. Health Psychol. 2005;24:58.
Williams-Piehota P, Schneider TR, Pizarro J, Mowad L, Salovey P. Matching health messages to information-processing styles: need for cognition and mammography utilization. J Health Commun. 2003;15:375–92.
Latimer AE, Katulak NA, Mowad L, Salovey P. Motivating cancer prevention and early detection behaviors using psychologically tailored messages. J Health Commun. 2005;10:137–55.
Ressler IB, Cash J, McNeill D, Joy S, Rosoff PM. Continued parental attendance at a clinic for adult survivors of childhood cancer. J Pediatr Hematol Oncol. 2003;25:868–73.
Doshi K, Kazak AE, DeRosa BW, Schwartz LA, Hobbie W, Ginsberg J, et al. Measuring health-related beliefs of mothers of adolescent and young adult childhood cancer survivors. Fam Syst Health. 2011;29:55.
Hoven EI, Lannering B, Gustafsson G, Boman KK. Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study. Psychooncology. 2013;22:160–7.
Norberg AL, Steneby S. Experiences of parents of children surviving brain tumour: a happy ending and a rough beginning. Eur J Cancer Care. 2009;18:371–80.
Prochaska JO, Norcross JC. Stages of change. Psychother Theor Res. 2001;38:443.
Sohl SJ, Moyer A. Tailored interventions to promote mammography screening: a meta-analytic review. Prev Med. 2007;45:252–61.
Glanz K, Rimer B, Viswanath K. Health behavior and health education: theory, practice, and research. 2008.
Recklitis CJ, Diller LR, Li X, Najita J, Robison LL, Zeltzer L. Suicide ideation in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2010;28:655–61.
Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24:5117–24.
Jairam V, Roberts KB, James BY. Historical trends in the use of radiation therapy for pediatric cancers: 1973–2008. Int J Radiat Oncol. 2013;85:e151–5.