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Feasibility of a Digital Storytelling Intervention for Hematopoietic Cell Transplant Patients

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Abstract

Patients undergoing hematopoietic cell transplantation (HCT) are at risk for psychological and social impairment given the rigors and multiple sequelae of treatment. The purpose of this pilot study was to test the feasibility of a digital storytelling (DS) intervention for HCT patients, and to examine limited efficacy of the intervention relative to control arm on psychological distress and perceived social support. Adult HCT patients (n = 40, M age = 59.2 years) were enrolled immediately post-HCT and randomly assigned to either DS intervention or information control (IC). DS participants viewed four 3-min personal, emotionally rich digital stories, and IC condition participants viewed four videos containing information about post-HCT care. Feasibility regarding recruitment, enrollment efforts, and change scores from pre- to post-intervention (Δs) on depression, anxiety, and perceived social support were tracked. Fifty-four (51.4%) of 105 eligible patients consented. Forty (74%) patients completed the intervention. All but one completed the post-intervention assessments demonstrating that HCT patients can be recruited and retained for this intervention. On average, perceived social support increased for the DS group (Δ = 0.06) but decreased for the IC group (Δ = − 0.05). Anxiety and depression improved over time in both conditions. Viewing digital stories with content evoking emotional contexts similar to one’s own health challenges may improve perceptions of social support among HCT patients. How DS can improve perceived social support for both short-term and longer-term sustained effects in a longitudinal study is an area ripe for additional investigation.

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References

  1. Alghamdi M, Hunt N, Thomas S (2015) The effectiveness of Narrative Exposure Therapy with traumatised firefighters in Saudi Arabia: a randomized controlled study. Behav Res Ther 66:64–71. https://doi.org/10.1016/j.brat.2015.01.008

    Article  PubMed  Google Scholar 

  2. Amonoo HL, Massey CN, Freedman ME, El-Jawahri A, Vitagliano HL, Pirl WF, Huffman JC (2019) Psychological considerations in hematopoietic stem cell transplantation. Psychosomatics 60(4):331–342. https://doi.org/10.1016/j.psym.2019.02.004

    Article  PubMed  PubMed Central  Google Scholar 

  3. Annibali O, Pensieri C, Tomarchio V, Biagioli V, Pennacchini M, Tendas A, Tambone V, Tirindelli MC (2017) Protective isolation for patients with haematological malignancies: a pilot study investigating patients’ distress and use of time. Int J Hematol-Oncol Stem Cell Res 11(4):313–318

    CAS  PubMed  PubMed Central  Google Scholar 

  4. Badger TA, Segrin C, Hepworth JT, Pasvogel A, Weihs K, Lopez AM (2013)Telephone-delivered health education and interpersonal counseling improve quality of life for Latinas with breast cancer and their supportive partners. Psycho-oncology 22(5):1035–1042. https://doi.org/10.1002/pon.3101

    Article  PubMed  Google Scholar 

  5. Badr H, Smith CB, Goldstein NE, Gomez JE, Redd WH (2015) Dyadic psychosocial intervention for advanced lung cancer patients and their family caregivers: results of a randomized pilot trial. Cancer 121(1):150–158

    Article  Google Scholar 

  6. Baker F, Denniston M, Zabora J, Polland A, Dudley WN (2002) A POMS short form for cancer patients: psychometric and structural evaluation. Psycho-oncology 11(4):273–281

    Article  Google Scholar 

  7. Benish-Weisman M, Lisa MW, Weinberger-Litman SL, Redd WH, Duhamel KN, Rini C (2014) Healing stories: narrative characteristics in cancer survivorship narratives and psychological health among hematopoietic stem cell transplant survivors. Palliat Support Care 12(4):261–267

    Article  Google Scholar 

  8. Bevans M, Castro K, Prince P, Shelburne N, Prachenko O, Loscalzo M, Soeken K, Zabora J (2010) An individualized dyadic problem-solving education intervention for patients and family caregivers during allogeneic hematopoietic stem cell transplantation: a feasibility study. Cancer Nurs 33(2):E24–E32. https://doi.org/10.1097/NCC.0b013e3181be5e6d

    Article  PubMed  PubMed Central  Google Scholar 

  9. Bowen DJ, Kreuter M, Spring B, Cofta-Woerpel L, Linnan L, Weiner D, Bakken S, Kaplan CP, Squiers L, Fabrizio C (2009) How we design feasibility studies. Am J Prev Med 36(5):452–457

    Article  Google Scholar 

  10. Carlick A, Biley FC (2004) Thoughts on the therapeutic use of narrative in the promotion of coping in cancer care. Eur J Cancer Care (Engl) 13(4):308–317. https://doi.org/10.1111/j.1365-2354.2004.00466.x

    Article  CAS  Google Scholar 

  11. Cella D, Riley W, Stone A, Rothrock N, Reeve B, Yount S, Amtmann D, Bode R, Buysse D, Choi S (2010) The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol 63(11):1179–1194

    Article  Google Scholar 

  12. Cockle-Hearne J, Cooke D, Faithfull S (2016) Developing peer support in film for cancer self-management: what do men want other men to know? Support Care Cancer 24(4):1625–1631. https://doi.org/10.1007/s00520-015-2938-8

    Article  CAS  PubMed  Google Scholar 

  13. Crogan NL, Evans BC, Bendel R (2008) Storytelling intervention for patients with cancer: part 2--pilot testing. Oncol Nurs Forum 35(2):265–272. https://doi.org/10.1188/08.ONF.265-272

    Article  PubMed  Google Scholar 

  14. DiMatteo MR (2004) Social support and patient adherence to medical treatment: a meta-analysis. Health Psychol 23(2):207–218

    Article  Google Scholar 

  15. Dóro CA, Neto JZ, Cunha R, Dóro MP (2017) Music therapy improves the mood of patients undergoing hematopoietic stem cells transplantation (controlled randomized study). Support Care Cancer 25(3):1013–1018

    Article  Google Scholar 

  16. DuHamel KN, Mosher CE, Winkel G, Labay LE, Rini C, Meschian YM, Austin J, Greene PB, Lawsin CR, Rusiewicz A, Grosskreutz CL, Isola L, Moskowitz CH, Papadopoulos EB, Rowley S, Scigliano E, Burkhalter JE, Hurley KE, Bollinger AR, Redd WH (2010) Randomized clinical trial of telephone-administered cognitive-behavioral therapy to reduce post-traumatic stress disorder and distress symptoms after hematopoietic stem-cell transplantation. J Clin Oncol 28(23):3754–3761. https://doi.org/10.1200/JCO.2009.26.8722

    Article  PubMed  PubMed Central  Google Scholar 

  17. El-Jawahri A, Chen Y-B, Brazauskas R, He N, Lee SJ, Knight JM, Majhail N, Buchbinder D, Schears RM, Wirk BM (2017) Impact of pre-transplant depression on outcomes of allogeneic and autologous hematopoietic stem cell transplantation. Cancer 123(10):1828–1838

    Article  Google Scholar 

  18. Fiddian-Green A, Kim S, Gubrium AC, Larkey LK, Peterson JC (2019) Restor (y) ing health: a conceptual model of the effects of digital storytelling. Health Promot Pract 20(4):502–512

    Article  Google Scholar 

  19. Ghasemian K, Estahbanati MAE (2019) The effectiveness of storytelling on reducing depression in cancer patients. Humanidades & Inovação 6(9):278–284

    Google Scholar 

  20. Gooley TA, Chien JW, Pergam SA, Hingorani S, Sorror ML, Boeckh M, Martin PJ et al (2010) Reduced mortality after allogeneic hematopoietic-cell transplantation. N Engl J Med 363(22):2091–2101. https://doi.org/10.1056/NEJMoa1004383

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Green MC (2006) Narratives and cancer communication. J Commun 56:S163–S183

    Article  Google Scholar 

  22. Green MC, Brock TC (2000) The role of transportation in the persuasiveness of public narratives. J Pers Soc Psychol 79(5):701–721

    Article  CAS  Google Scholar 

  23. Grossman P, Zwahlen D, Halter JP, Passweg JR, Steiner C, Kiss A (2015) A mindfulness-based program for improving quality of life among hematopoietic stem cell transplantation survivors: feasibility and preliminary findings. Support Care Cancer 23(4):1105–1112

    Article  Google Scholar 

  24. Harris LN, Cleary EH, Stanton AL (2015) Project connect online: user and visitor experiences of an Internet-based intervention for women with breast cancer. Psychooncology 24(9):1145–1151. https://doi.org/10.1002/pon.3734

    Article  PubMed  Google Scholar 

  25. Heckman TG, Heckman BD, Anderson T, Lovejoy TI, Mohr D, Sutton M, Bianco JA, Gau J-T(2013)Supportive-expressive and coping group teletherapies for HIV-infected older adults: a randomized clinical trial. AIDS Behav 17(9):3034–3044. https://doi.org/10.1007/s10461-013-0441-0

    Article  PubMed  Google Scholar 

  26. Hinyard LJ, Kreuter MW (2007) Using narrative communication as a tool for health behavior change: a conceptual, theoretical, and empirical overview. Health Educ Behav 34(5):777–792. https://doi.org/10.1177/1090198106291963

    Article  PubMed  Google Scholar 

  27. Houston TK (2011) The art and science of patient storytelling—harnessing narrative communication for behavioral interventions: the ACCE project. J Health Commun 16(7):686; 686-697; 697. https://doi.org/10.1080/10810730.2011.551997

    Article  PubMed  Google Scholar 

  28. Hoybye MT, Johansen C, Tjornhoj-Thomsen T (2005) Online interaction. Effects of storytelling in an internet breast cancer support group. Psychooncology 14(3):211–220. https://doi.org/10.1002/pon.837

    Article  PubMed  Google Scholar 

  29. Jim HSL, Syrjala KL, Rizzo D (2012) Supportive care of hematopoietic cell transplant patients. Biol Blood Marrow Transplant 18(1, Supplement):S12–S16. https://doi.org/10.1016/j.bbmt.2011.10.029

    Article  PubMed  PubMed Central  Google Scholar 

  30. Kenzik K, Chan Huang I, Douglas Rizzo J, Shenkman E, Wingard J (2015) Relationships among symptoms, psychosocial factors, and health-related quality of life in hematopoietic stem cell transplant survivors. Support Care Cancer 23(3):797–807. https://doi.org/10.1007/s00520-014-2420-z

    Article  PubMed  Google Scholar 

  31. Kim W, Bangerter LR, Jo S, Langer S, Larkey L, Griffin J, Khera N (2019) Feasibility and acceptability of a 3-day group-based digital storytelling workshop among caregivers of allogeneic hematopoietic cell transplant patients: a mixed methods approach. Biol Blood Marrow Transplant 25:2228–2233

    Article  Google Scholar 

  32. Kim W, Davis OI, Larkey L, Langer S, Suh B, Hoffmann N, Thakur RD, Khera N (2020) Metacommunication process during a 3-day digital storytelling workshop for patients recovering from hematopoietic cell transplantation. Narrat Inq 30(2). https://doi.org/10.1075/ni.19036.kim

  33. Knaevelsrud C, Böttche M, Pietrzak RH, Freyberger HJ, Renneberg B, Kuwert P (2014) Integrative testimonial therapy: an Internet-based, therapist-assisted therapy for German elderly survivors of the World War II with posttraumatic stress symptoms. J Nerv Ment Dis 202(9):651–658

    Article  Google Scholar 

  34. Kreuter MW, Green MC, Cappella JN, Slater MD, Wise ME, Storey D, Clark EM et al (2007) Narrative communication in cancer prevention and control: a framework to guide research and application. Ann Behav Med 33(3):221–235. https://doi.org/10.1080/08836610701357922

    Article  PubMed  Google Scholar 

  35. Kuba K, Esser P, Mehnert A, Johansen C, Schwinn A, Schirmer L, Schulz-Kindermann F, Kruse M, Koch U, Zander A, Kröger N, Götze H, Scherwath A (2017) Depression and anxiety following hematopoietic stem cell transplantation: a prospective population-based study in Germany. Bone Marrow Transplant 52(12):1651–1657. https://doi.org/10.1038/bmt.2017.190

    Article  CAS  PubMed  Google Scholar 

  36. Langer, Kelly TH, Storer BE, Hall SP, Lucas HG, Syrjala KL (2012) Expressive talking among caregivers of hematopoietic stem cell transplant survivors: acceptability and concurrent subjective, objective, and physiologic indicators of emotion. J Psychosoc Oncol 30(3):294–315

    Article  Google Scholar 

  37. Langer SL, Porter LS, Romano JM, Todd MW, Lee SJ (2018) A couple-based communication intervention for hematopoietic cell transplantation survivors and their caregiving partners: feasibility, acceptability, and change in process measures. Biol Blood Marrow Transplant 24(9):1888–1895

    Article  Google Scholar 

  38. Larkey, Hill A (2012) Using narratives to promote health: a culture-centric approach. Health Communication Message Design: Theory and Practice. Sage, Los Angeles

    Google Scholar 

  39. Larkey LK, McClain D, Roe DJ, Hector RD, Lopez AM, Sillanpaa B, Gonzalez J (2015) Randomized controlled trial of storytelling compared to a personal risk tool intervention on colorectal cancer screening in low-income patients. Am J Health Promot 30(2):e59–e70. https://doi.org/10.4278/ajhp.131111-QUAN-572

    Article  PubMed  Google Scholar 

  40. Laudenslager ML, Simoneau TL, Kilbourn K, Natvig C, Philips S, Spradley J, Benitez P, McSweeney P, Mikulich-Gilbertson SK (2015) A randomized control trial of a psychosocial intervention for caregivers of allogeneic hematopoietic stem cell transplant patients: effects on distress. Bone Marrow Transplant 50(8):1110–1118

    Article  CAS  Google Scholar 

  41. McQueen A, Kreuter MW, Kalesan B, Alcaraz KI (2011) Understanding narrative effects: the impact of breast cancer survivor stories on message processing, attitudes, and beliefs among African American women. Health Psychol 30(6):674–682. https://doi.org/10.1037/a0025395

    Article  PubMed  PubMed Central  Google Scholar 

  42. Mosher CE, Lepore SJ, Wu L, Austin J, Valdimarsdottir H, Rowley S, Isola L, Redd WH, Rini C (2012) Social correlates of distress following hematopoietic stem cell transplantation: exploring the role of loneliness and cognitive processing. J Health Psychol 17(7):1022–1032

    Article  Google Scholar 

  43. Nakamura ZM, Nash RP, Quillen LJ, Richardson DR, McCall RC, Park EM (2019) Psychiatric care in hematopoietic stem cell transplantation. Psychosomatics 60(3):227–237

    Article  Google Scholar 

  44. Niederwieser D, Baldomero H, Szer J, Gratwohl M, Aljurf M, Atsuta Y, Bouzas LF et al (2016) Hematopoietic stem cell transplantation activity worldwide in 2012 and a SWOT analysis of the Worldwide Network for Blood and Marrow Transplantation Group including the global survey. Bone Marrow Transplant 51(6):778–785. https://doi.org/10.1038/bmt.2016.18

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  45. Pasquini MC, Wang Z, Horowitz MM, Gale RP (2010) report from the Center for International Blood and Marrow Transplant Research (CIBMTR): current uses and outcomes of hematopoietic cell transplants for blood and bone marrow disorders. Clin Transpl 2010:87–105

    Google Scholar 

  46. Pennebaker JW (2000) Telling stories: the health benefits of narrative. Lit Med 19(1):3–18

    Article  CAS  Google Scholar 

  47. Rini C, Redd WH, Austin J, Mosher CE, Meschian YM, Isola L, Scigliano E, Moskowitz CH, Papadopoulos E, Labay LE (2011) Effectiveness of partner social support predicts enduring psychological distress after hematopoietic stem cell transplantation. J Consult Clin Psychol 79(1):64–74

    Article  Google Scholar 

  48. Rini C, Austin J, Lisa MW, Winkel G, Valdimarsdottir H, Stanton AL, Isola L, Rowley S, Redd WH (2014) Harnessing benefits of helping others: a randomized controlled trial testing expressive helping to address survivorship problems after hematopoietic stem cell transplant. Health Psychol 33(12):1541–1551

    Article  Google Scholar 

  49. Rutten LJF, Agunwamba AA, Wilson P, Chawla N, Vieux S, Blanch-Hartigan D, Arora NK, Blake K, Hesse BW (2016)Cancer-related information seeking among cancer survivors: trends over a decade (2003–2013). J Cancer Educ 31(2):348–357

    Article  Google Scholar 

  50. Sahler OJZ, Hunter BC, Liesveld JL (2003) The effect of using music therapy with relaxation imagery in the management of patients undergoing bone marrow transplantation: a pilot feasibility study. Altern Ther Health Med 9(6):70

    PubMed  Google Scholar 

  51. Schoenau MN, Jackson IM (2016) Effectiveness of storytelling interventions on psychosocial outcomes in adult patients with a life-threatening illness: a systematic review protocol. JBI Database System Rev Implement Rep 14(6):52–60

    Article  Google Scholar 

  52. Singer JA (2004) Narrative identity and meaning making across the adult lifespan: An introduction. J Pers 72(3):437–460

    Article  Google Scholar 

  53. Syrjala KL, Langer SL, Abrams JR, Storer B, Sanders JE, Flowers ME, Martin PJ (2004) Recovery and long-term function after hematopoietic cell transplantation for leukemia or lymphoma. Jama 291(19):2335–2343. https://doi.org/10.1001/jama.291.19.2335

    Article  CAS  PubMed  Google Scholar 

  54. Syrjala KL, Martin P, Deeg J, Boeckh M (2007) Medical and psychosocial issues in transplant survivors. In: Ganz PA (ed) Cancer survivorship today and tomorrow. Springer, New York, pp 188–214

    Chapter  Google Scholar 

  55. Syrjala KL, Yi Jean C, Artherholt SB, Romano JM, Crouch M-L, Fiscalini AS, Hegel MT, Flowers MED, Martin PJ, Leisenring WM (2018) An online randomized controlled trial, with or without problem-solving treatment, for long-term cancer survivors after hematopoietic cell transplantation. J Cancer Surviv 12(4):560–570

    Article  Google Scholar 

  56. Wingard JR, Vogelsang GB, Deeg HJ (2002) Stem cell transplantation: supportive care and long-term complications. Hematology / the Education Program of the American Society of Hematology. American Society of Hematology. Education Program:422

  57. Woudstra AJ, Suurmond J (2019) How narratives influence colorectal cancer screening decision making and uptake: a realist review. Health Expect. https://doi.org/10.1111/hex.12892

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Funding

This work was supported by the Mayo Clinic Marely Grant and Institute of Social Science Research Grant at Arizona State University.

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  1. Edson College of Nursing and Health Innovation, Arizona State University, 500 N. 3rd St. MC. 3020, Phoenix, AZ, 85004, USA

    Wonsun (Sunny) Kim, Shelby Langer, Michael Todd, Linda Larkey & Soojung Jo

  2. UnitedHealth Group Research and Development, Minneapolis, MN, USA

    Lauren R. Bangerter

  3. College of Medicine, Mayo Clinic of Arizona, Phoenix, AZ, USA

    Nandita Khera

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  1. Wonsun (Sunny) Kim
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Kim, W.(., Langer, S., Todd, M. et al. Feasibility of a Digital Storytelling Intervention for Hematopoietic Cell Transplant Patients. J Canc Educ 37, 1275–1285 (2022). https://doi.org/10.1007/s13187-020-01948-2

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