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Articles

A mixed-methods study of the disease experience in hematopoietic stem cell transplantation survivors: the contribution of text analysis

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References

  • Copelan EA. Hematopoietic stem-cell transplantation. N Engl J Med. 2006;354(17):1813–1826. doi:10.1056/NEJMra052638
  • MacLeod KD, Whitsett SF, Mash EJ, Pelletier W. Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience. J Pediatr Psychol. 2003;28(4):223–231. doi:10.1093/jpepsy/jsg010
  • Zanato S, Traverso A, Tremolada M, et al. Psychopathological aspects in childhood hematopoietic stem cell transplantation (HSCT): the perception of parents and adolescents. Front Psychol. 2017;8:272. doi:10.3389/fpsyg.2017.00272
  • Phipps S, Dunavant M, Garvie PA, Lensing S, Rai SN. Acute health-related quality of life in children undergoing stem cell transplant: I. Descriptive outcomes. Bone Marrow Transplant. 2002;29(5):425–434. doi:10.1038/sj.bmt. 1703377.
  • Seitz DCM, Besier T, Debatin K-M, et al. Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. Eur J Cancer. 2010;46(9):1596–1606. doi:10.1016/j.ejca. 2010.03.001.
  • Taskıran G, Sürer Adanır A, Özatalay E. Living with the unknown: posttraumatic stress disorder in pediatric bone marrow transplantation survivors and their mothers. Pediatr Hematol Oncol. 2016;33(3):209–218. doi:10.3109/08880018.2016.1149749
  • Ahomäki R, Gunn ME, Madanat-Harjuoja LM, Matomäki J, Malila N, Lähteenmäki PM. Late psychiatric morbidity in survivors of cancer at a young age: a nationwide registry-based study. Int J Cancer. 2015;137(1):183–192. doi:10.1002/ijc.29371
  • Reiter-Purtill J, Vannatta K, Gerhardt CA, Correll J, Noll RB. A controlled longitudinal study of the social functioning of children who completed treatment of cancer. J Pediatr Hematol Oncol. 2003;25(6):467–473. doi:10.1097/00043426-200306000-00008
  • Phipps S, Mulhern RK. Family cohesion and expressiveness promote resilience to the stress of pediatric bone marrow transplant: a preliminary report. J Dev BehavPediatr. 1995;16:257–263.
  • Wiener LS, Steffen-Smith E, Fry T, Wayne AS. Hematopoietic stem cell donation in children: a review of the sibling donor experience. J Psychosoc Oncol. 2007;25(1):45–46. doi:10.1300/J077v25n01_03
  • GizliÇoban Ö, SürerAdanır A, Özatalay E. Post-traumatic stress disorder and health-related quality of life in the siblings of the pediatric bone marrow transplantation survivors and post-traumatic stress disorder in their mothers. Pediatr Transplant. 2017;21(6):e13003. doi:10.1111/petr.13003
  • Hutt D, Nehari M, Munitz-Shenkar D, Alkalay Y, Toren A, Bielorai B. Hematopoietic stem cell donation: psychological perspectives of pediatric sibling donors and their parents. Bone Marrow Transplant. 2015;50(10):1337–1342. doi:10.1038/bmt.2015.152
  • Wilkins KL, Woodgate RL. An interruption in family life: siblings’ lived experience as they transition through the pediatric bone marrow transplant trajectory. Oncol Nurs Forum. 2007;34(2):28–35. doi:10.1188/07.ONF.E28-E35
  • Wu J, Mu PF, Tsay SL, Chiou TJ. Parental experience of family stress during hematopoietic stem cell transplantation of pediatric patients in germ-free isolation in Taiwan. Cancer Nurs. 2005;28(5):363–371. doi:10.1097/00002820-200509000-00005
  • Ullrich CK, Rodday AM, Bingen K, et al. Parent outlook: how parents view the road ahead as they embark on Hematopoietic Stem Cell Transplantation for their child. Biol Blood Marrow Transplant. 2016;22(1):104–111. doi:10.1016/j.bbmt.2015.08.040
  • Moore CW, Rauch PK. Addressing parenting concerns of bone marrow transplant patients: opening (and closing) Pandora’s box. Bone Marrow Transplant. 2006;38(12):775–782. doi:10.1038/sj.bmt.1705522
  • Rodrigue JR, MacNaughton K, Hoffmann RG, 3rd, et al. Transplantation in children. A longitudinal assessment of mothers' stress, coping, and perceptions of family functioning. Psychosomatics. 1997;38(5):478–486. doi:10.1016/S0033-3182(97)71425-7
  • Manne S, DuHamel K, Ostroff J, et al. Anxiety, depressive, and posttraumatic stress disorders among mothers of pediatric survivors of hematopoietic stem cell transplantation. Pediatrics. 2004; 113(6):1700–1708. doi:10.1542/peds.113.6.1700
  • Sinatora F, Traverso A, Zanato S, et al. Quality of life and psychopathology in adults who underwent hematopoietic stem cell transplantation (HSCT) in childhood: a qualitative and quantitative analysis. Front Psychol. 2017;8:1316. doi:10.3389/fpsyg.2017.01316
  • Bruner J. Acts of Meaning. Harvard: University Press; 1990.
  • Vezzani B. L’approccio narrativo al lavoro con la famiglia. [The narrative approach in the work with families]. In L’approccio narrativo. Teoria e applicazioni nell’intervento sociale. [The Narrative Approach. The Theory and Applications in Social Interventions]. Padova, PD: Unipress; 1998. p. 107–114.
  • Gergen KJ, Gergen MM. Narrative and the self as relationship. Adv Exp Soc Psychol. 1988;21:17–56.
  • Gergen KJ. Il ruolo della narrazione nella costruzione della conoscenza [The role of narration in the construction of knowledge]. Narrare il Gruppo [in Narrating the Group]. 2004;1:9–20.
  • Wong G, Breheny M. Narrative analysis in health psychology: a guide for analysis. Health Psychol Behav Med. 2018; 6(1):245–261. doi:10.1080/21642850.2018.1515017
  • Greenhalgh T, Hurwitz B. Narrative based medicine: why study narrative? BMJ. 1999; 318(7175):48–50. doi:10.1136/bmj.318.7175.48
  • Elwyn G, Gwyn R. Narrative based medicine: stories we hear and stories we tell: analysing talk in clinical practice. BMJ. 1999; 318(7177):186–188. doi:10.1136/bmj.318.7177.186
  • Fioretti C, Mazzocco K, Riva S, Oliveri S, Masiero M, Pravettoni G. Research studies on patients' illness experience using the narrative medicine approach: a systematic review. Bmj Open. 2016; 6(7):e011220. doi:10.1136/bmjopen-2016-011220
  • Roikjaer SG, Missel M, Bergenholtz HM, Schønau MN, Timm HU. The use of personal narratives in hospital-based palliative care interventions: an integrative literature review. Palliat Med. 2019;33(10):1255–1271. doi:10.1177/0269216319866651
  • Achenbach TM, Rescorla LA. Manual for the ASEBA School-Age Forms and Profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth and Families; 2001.
  • Nakamura B, Ebesutani C, Bernstein A, Chorpita BF. A psychometric analysis of the Child Behavior Checklist DSM-Oriented Scales. J Psychopathol Behav Assess. 2009;31(3):178–189. doi:10.1007/s10862-008-9119-8
  • Lancia F. T-LAB 8.1 – User’s Manual. 2012.
  • Angioi C, Olivo G, Rosini M, Sgambelluri M, Sinatora F. Il Training Group narrato. Analisi dei significati emergenti dai resoconti dei partecipanti al seminario [The narrative Training Group. Analysis of meanings emerging from the participants’ reports]. Narrare i Gruppi. Prospettive Cliniche e Sociali. [Narrating Groups. Clinical and Social Perspectives]. 2008;3(1):1–24.
  • De Luca Picione R, Luisa Martino M, Freda MF. Understanding cancer patients’ narratives: meaning-making process, temporality, and modal articulation. J Construct Psychol. 2017; 30(4):339–359. doi:10.1080/10720537.2016.1227738
  • Bolasco S. Criteri di lemmatizzazione per l’individuazione di coordinate semantiche [Criteria of lemmatization for the individuation of semantic coordinates. In Ricerca Qualitativa e Computer. [Qualitative Research and Computer]. Milano, MI: Franco Angeli Editore; 1995. p. 87–111.
  • Assefa SG, Rorissa AA. bibliometric mapping of the structure of STEM education using co‐word analysis. J Am Soc Inf Sci Tec. 2013; 64(12):2513–2536. doi:10.1002/asi.22917
  • Callon M, Law J, Rip A. Mapping the Dynamics of Science and Technology: Sociology of Science in the Real World. Macmillan; 1986.
  • Wilkins KL, Woodgate RL. Supporting siblings through the pediatric bone marrow transplant trajectory. Perspectives of siblings of bone marrow transplant recipients. Cancer Nurs. 2007; 30(5):E29–34. doi:10.1097/01.NCC.0000290811.06948.2c
  • Lindahl-Norberg A, Mellgren K, Winiarski J, Forinder U. Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation. Pediatr Transplant. 2014;18(3):302–309. doi:10.1111/petr.12228
  • Norberg AL, Forinder U. Different aspects of psychological ill health in a national sample of Swedish parents after successful paediatric stem cell transplantation. Pediatr Blood Cancer. 2016;63(6):1065–1069. doi:10.1002/pbc.25908
  • Sanders JE, Hoffmeister PA, Storer BE, Appelbaum FR, Storb RF, Syrjala KL. The quality of life of adult survivors of childhood hematopoietic cell transplant. Bone Marrow Transplant. 2010; 45(4):746–754. doi:10.1038/bmt.2009.224
  • Zeltzer LK, Lu Q, Leisenring W, 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 Biomarkers Prev. 2008; 17(2):435–446. doi:10.1158/1055-9965.EPI-07-2541
  • Michel G, Rebholz CE, von der Weid NX, Bergstraesser E, Kuehni CE. Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor study. J Clin Oncol. 2010; 28(10):1740–1748. doi:10.1200/JCO.2009.23.4534
  • Keusch F, Rao R, Chang L, Lepkowski J, Reddy P, Choi SW. Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation. Biol Blood Marrow Transplant. 2014;20(10):1604–1611. doi:10.1016/j.bbmt.2014.06.020
  • Frank AW. Narrative ethics as dialogical story-telling. Hastings Cent Rep. 2014;44(1):16–20. doi:10.1002/hast.263

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