Trajectories of social isolation in adult survivors of childhood cancer
Tóm tắt
Long-term childhood cancer survivors may be at increased risk for poor social outcomes as a result of their cancer treatment, as well as physical and psychological health problems. Yet, important challenges, namely social isolation, are not well understood. Moreover, survivors' perspectives of social isolation as well as the ways in which this might evolve through young adulthood have yet to be investigated. The purpose of this research was to describe the trajectories of social isolation experienced by adult survivors of a childhood cancer. Data from 30 in-depth interviews with survivors (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, constant comparative methods. Experiences of social isolation evolved over time as survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation after their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. Knowledge of when social isolation begins and how it evolves over time for different survivors is an important consideration for the development of interventions that prevent or mitigate this challenge. Assessing and addressing social outcomes, including isolation, might promote comprehensive long-term follow-up care for childhood cancer survivors.
Tài liệu tham khảo
Ellison LF, De P, Mery LS, Grundy PE. Canadian cancer statistics at a glance: cancer in children. CMAJ. 2009;180:422–4.
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.
Barrera M, Shaw AK, Speechley KN, Maunsell E, Pogany L. Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer. 2005;104:1751–60.
de Boer AG, Verbeek JH, van Dijk FJ. Adult survivors of childhood cancer and unemployment: a metaanalysis. Cancer. 2006;107:1–11.
Schultz KAP, Ness KK, Whitton J, Recklitis C, Zebrack B, Robison LL, et al. Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the childhood cancer survivor study. J Clinic Oncol. 2007;25:3649–56.
Zebrack BJ, Zevon MA, Turk N, Nagarajan R, Whitton J, Robison LL, et al. Psychological distress in long-term survivors of solid tumors diagnosed in childhood: a report from the childhood cancer survivor study. Pediatr Blood Cancer. 2007;49:47–51.
Cornwell EY, Waite LJ. Social disconnectedness, perceived isolation, and health among older adults. J Health Soc Behav. 2009;50:31–48.
Decker CL. Social support and adolescent cancer survivors: a review of the literature. Psychooncology. 2007;16:1–11.
Steptoe A, Shankar A, Demakakos P, Wardle J. Social isolation, loneliness, and all-cause mortality in older men and women. Proc Natl Acad Sci. 2013;110:5797–801.
Barth J, Schneider S, von Känel R. Lack of social support in the etiology and the prognosis of coronary heart disease: a systematic review and meta-analysis. Psychosom Med. 2010;72:229–38.
Kroenke CH, Kubzansky LD, Schernhammer ES, Holmes MD, Kawachi I. Social networks, social support, and survival after breast cancer diagnosis. J Clinic Oncol. 2006;24:1105–11.
Kroenke CH, Quesenberry C, Kwan ML, Sweeney C, Castillo A, Caan BJ. Social networks, social support, and burden in relationships, and mortality after breast cancer diagnosis in the Life After Breast Cancer Epidemiology (LACE) Study. Breast Cancer Res Treat. 2013;137:261–71.
Holt-Lunstad J, Smith TB. Layton JB Social relationships and mortality risk: a meta-analytic review. PLoS Med. 2010;7:e1000316.
Pinquart M, Duberstein PR. Associations of social networks with cancer mortality: a meta-analysis. Crit Rev Oncol Hematol. 2010;75:122–37.
Foley KL, Farmer DF, Petronis VM, Smith RG, McGraw S, Smith K, et al. A qualitative exploration of the cancer experience among long-term survivors: comparisons by cancer type, ethnicity, gender, and age. Psychooncology. 2006;15:248–58.
Derevensky J, Tsanos A, Handman M. Children with cancer: an examination of their coping and adaptive behavior. J Psychosoc Oncol. 1998;16:37–61.
Zebrack BJ, Zeltzer LK, Whitton J, Mertens AC, Odom L, Berkow R, et al. 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. 2002;110:42–52.
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 Epidem, Biomarkers Prev. 2008;17:435–46.
Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, et al. Social outcomes in the Childhood Cancer Survivor Study cohort. J Clinic Oncol. 2009;27:2390–5.
Moyer KH, Willard VW, Gross AM, Netson KL, Ashford JM, Kahalley LS, et al. The impact of attention on social functioning in survivors of pediatric acute lymphoblastic leukemia and brain tumors. Pediatr Blood Cancer. 2012;59:1290–5.
Patenaude AF, Kupst MJ. Psychosocial functioning in pediatric cancer. J Pediatr Psychol. 2005;30:9–27.
Vannatta K, Gartstein MA, Short A, Noll RB. A controlled study of peer relationships of children surviving brain tumors: teacher, peer, and self ratings. J Pediatr Psychol. 1998;23:279–87.
Schulte F, Barrera M. Social competence in childhood brain tumor survivors: a comprehensive review. Support Care Cancer. 2010;18:1499–513.
Vannatta K, Gerhardt CA, Wells RJ, Noll RB. Intensity of CNS treatment for pediatric cancer: prediction of social outcomes in survivors. Pediatr Blood Cancer. 2007;49:716–22.
Brinkman TM, Palmer SL, Chen S, Zhang H, Evankovich K, Swain MA, et al. Parent-reported social outcomes after treatment for pediatric embryonal tumors: a prospective longitudinal study. J Clinic Oncol. 2012;30:4134–40.
Levin Newby W, Brown RT, Pawletko TM, Gold SH. Whitt JK Social skills and psychological adjustment of child and adolescent cancer survivors. Psychooncology. 2000;9:113–26.
Upton P, Eiser C. School experiences after treatment for a brain tumour. Child Care Health Dev. 2006;32:9–17.
Vance YH, Eiser C, Horne B. Parents’ views of the impact of childhood brain tumours and treatment on young people’s social and family functioning. Clinic Child Psychol Psychiat. 2004;9:271–88.
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.
Lancashire ER, Frobisher C, Reulen RC, Winter DL, Glaser A, Hawkins MM. Educational attainment among adult survivors of childhood cancer in Great Britain: a population-based cohort study. J Natl Cancer Inst. 2010;102:254–70.
Mitby PA, Robison LL, Whitton JA, Zevon MA, Gibbs IC, Tersak JM, et al. Utilization of special education services and educational attainment among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer. 2003;97:1115–26.
Koch SV, Kejs AM, Engholm G, Johansen C, Schmiegelow K. Educational attainment among survivors of childhood cancer: a population-based cohort study in Denmark. British J Cancer. 2004;91:923–8.
Boman KK, Lindblad F, Hjern A. Long-term outcomes of childhood cancer survivors in Sweden: a population-based study of education, employment, and income. Cancer. 2010;116:1385–91.
Lorenzi M, McMillan AJ, Siegel LS, Zumbo BD, Glickman V, Spinelli JJ, et al. Educational outcomes among survivors of childhood cancer in British Columbia, Canada: report of the Childhood/Adolescent/Young Adult Cancer Survivors (CAYACS) Program. Cancer. 2009;115:2234–45.
Langeveld NE, Ubbink MC, Last BF, Grootenhuis MA, Voute PA, De Haan RJ. Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology. 2003;12:213–25.
Stam H, Grootenhuis MA, Last BF. The course of life of survivors of childhood cancer. Psychooncology. 2005;14:227–38.
Mackie E, Hill J, Kondryn H. McNally R Adult psychosocial outcomes in long-term survivors of acute lymphoblastic leukaemia and Wilms' tumour: a controlled study. Lancet. 2000;355:1310.
Frobisher C, Lancashire ER, Winter DL, Jenkinson HC, Hawkins MM. Long-term population-based marriage rates among adult survivors of childhood cancer in Britain. Internatl J Cancer. 2007;121:846–55.
van Dijk EM, van Dulmen-den BE, Kaspers GJL, van Dam EW, Braam KI. Huisman J Psychosexual functioning of childhood cancer survivors. Psychooncology. 2008;17:506–11.
Bober SL, Zhou ES, Chen B, Manley PE, Kenney LB. Recklitis CJ Sexual function in childhood cancer survivors: a report from Project REACH. J Sexual Med. 2013;10(8):2084–93.
Zebrack BJ, Foley S, Wittmann D, Leonard M. Sexual functioning in young adult survivors of childhood cancer. Psychooncology. 2010;19:814–22.
Dieluweit U, Debatin K, Grabow D, Kaatsch P, Peter R, Seitz D, et al. Social outcomes of long-term survivors of adolescent cancer. Psychooncology. 2010;19:1277–84.
Woodgate R. Life is never the same: childhood cancer narratives. Eur J Cancer Care. 2006;15:8–18.
Sherwin S. The politics of women’s health: exploring agency and autonomy. PressPhiladelphia, PA: Temple University; 1998.
Doane GH. Varcoe C Family nursing as relational inquiry: developing health-promoting practice. Philadelphia, PA: Lippincott Williams & Wilkins; 2004.
d'Agincourt-Canning L Genetic testing for hereditary breast and ovarian cancer: responsibility and choice. Qual Health Res 2006; 16:97–118.
Howard A, Balneaves LG, Bottorff JL. Rodney P Preserving the self: the process of decision making about hereditary breast cancer and ovarian cancer risk reduction. Qual Health Res. 2011;21:502.
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.
Surbone A. The difficult task of family caregiving in oncology: exactly which roles do autonomy and gender play? Support Care Cancer. 2003;11:617–9.
Surbone A. Telling the truth to patients with cancer: what is the truth? Lancet Oncol. 2006;7:944–50.
Surbone A. Kagawa-Singer M Culture, Ethnicity, and Race: Persistent Disparities in Older Women with Breast Cancer. In: Anonymous Management of Breast Cancer in Older Women. Berlin, Heidelberg: Springer; 2010. p. 349–69.
Anne Donchin 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.
Morse JM. Field PA Qualtiative research methods for health professionals. Sage: Thousand Oaks, CA; 1995.
Strauss A. Corbin J Basics of qualitative research: techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage Publications Ltd; 1998.
Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. Thousand Oaks, CA: Sage Publications Ltd; 2006.
Speechley KN, Barrera M, Shaw AK, Morrison HI, Maunsell E. Health-related quality of life among child and adolescent survivors of childhood cancer. J Clinic Oncol. 2006;24:2536–43.
Van Dijk J, Imhof SM, Moll AC, Ringens PJ, Cohen-Kettenis PT, Rijmen F, et al. Quality of life of adult retinoblastoma survivors in the Netherlands. Health Quality Life Outcomes. 2007;5:30.
Barrera M, Schulte F, Spiegler B. Factors influencing depressive symptoms of children treated for a brain tumor. J Psychosoc Oncol. 2008;26:1–16.
Langeveld N, Grootenhuis M, Voute P, De Haan R, Van Den Bos C. Quality of life, self-esteem and worries in young adult survivors of childhood cancer. Psychooncology. 2004;13:867–81.
Boman KK, Hörnquist L, De Graaff L, Rickardsson J, Lannering B, Gustafsson G Disability, body image and sports/physical activity in adult survivors of childhood CNS tumors: population-based outcomes from a cohort study. J Neurooncol 2013:1–8.
Pendley JS, Dahlquist LM, Dreyer Z. Body image and psychosocial adjustment in adolescent cancer survivors. J Pediatr Psychol. 1997;22:29–43.
Umberson D, Crosnoe R, Reczek C. Social relationships and health behavior across life course. Annu Rev Sociol. 2010;36:139–57.
Banner LM, Mackie EJ, Hill JW. Family relationships in survivors of childhood cancer: resource or restraint? Patient Educ Couns. 1996;28:191–9.
Orbuch TL, Parry C, Chesler M, Fritz J, Repetto P. Parent-child relationships and quality of life: resilience among childhood cancer survivors*. Fam Relat. 2005;54:171–83.
Hill J, Kondryn H, Mackie E, McNally R, Eden T. Adult psychosocial functioning following childhood cancer: the different roles of sons’ and daughters’ relationships with their fathers and mothers. J Child Psychol Psychiat. 2003;44:752–62.
Kazak AE. Evidence-based interventions for survivors of childhood cancer and their families. J Pediatr Psychol. 2005;30:29–39.
Prevatt FF, Heffer RW, Lowe PA. A review of school reintegration programs for children with cancer. J School Psychol. 2000;38:447–67.
Meyler E, Guerin S, Kiernan G, Breatnach F. Review of family-based psychosocial interventions for childhood cancer. J Pediatr Psychol. 2010;35:1116–32.
Varni JW, Katz ER, Colegrove R, Dolgin M. The impact of social skills training on the adjustment of children with newly diagnosed cancer. J Pediatr Psychol. 1993;18:751–67.
Barakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML. Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. J Pediatr Psychol. 1997;22:843–59.
Khan F, Amatya B, Rajapaksa I, Ng L. Outcomes of social support programs in brain cancer survivors in an Australian community cohort: a prospective study. J Cancer Res Ther. 2013;1:24–33.
McDougall J, Tsonis M. Quality of life in survivors of childhood cancer: a systematic review of the literature (2001–2008). Support Care Cancer. 2009;17:1231–46.