Adaptation of Coping Together - a self-directed coping skills intervention for patients and caregivers in an outpatient hematopoietic stem cell transplantation setting: a study protocol

Tammy Son, Sylvie Lambert, Ann Jakubowski, Barbara DiCicco-Bloom, Carmen G Loiselle, Tammy Son, Sylvie Lambert, Ann Jakubowski, Barbara DiCicco-Bloom, Carmen G Loiselle

Abstract

Background: Despite numerous reports of significant distress and burden for hematopoietic stem cell transplantation (HSCT) patients and caregivers (CGs), HSCT-specific coping interventions remain rare. The few in use lack specificity and are often not easily accessible or cost-effective. Whereas the development of new interventions is resource-intensive, theory-informed adaptation of existing evidence-based interventions is promising. To date, no HSCT-specific intervention has relied on a formal adaptation approach.

Methods: Using the Center for Disease Control and Prevention's Map of Adaptation, this two-phase qualitative descriptive study seeks to understand the perceptions of HSCT patients, CGs, individually, and in dyads, and clinicians about Coping Together (CT) for the preliminary adaptation (Phase 1), and then explores perceptions of the modified intervention in additional mixed sample (Phase 2). Six to ten participants including outpatients, CGs and dyads and five to seven HSCT clinician participants will be recruited for Phase 1. For Phase 2, 14 to 16 participants including outpatients, CGs and dyads will be recruited. Individual and dyadic semi-structured interviews will take place between 100 and 130 days post-HSCT. Verbatim transcripts will be analyzed using content analysis.

Discussion: It is paramount to have HSCT-specific supportive interventions that address patients' and CGs' multidimensional and complex needs. The timely involvement of key stakeholders throughout the adaptation process is likely to optimize the relevance and uptake of such tailored intervention.

Trial registration: This study is registered on October 6, 2016 in ClinicalTrials.gov at (identifier number NCT02928185 ).

Keywords: Caregivers; Center for Disease Control and Prevention’s map of adaptation; Coping; Coping together; Dyads; Hematopoietic stem cell transplantation; Intervention adaptation and refinement; Recovery phase; Self-directed intervention.

Conflict of interest statement

Ethics approval and consent to participate

The protocol for this research study has been reviewed and approved by the MSKCC Nursing Research Council, Medicine Steering Committee, Research Council-B and the IRB (protocol number 16–1334) and McGill University IRB (study number A10-B56-16B). HSCT clinicians have been verbally consented per the approval of the Roger S. Wilson, MD, Chairman, MSKCC IRB/Privacy Board –A. All HSCT participants (patients, CGs) have signed consent forms.

Consent for publication

This manuscript does not contain data from any individual person, therefore consent for publication is not applicable.

Competing interests

The authors declare they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Summary of the CDC’s Map of Adaptation Guidelines
Fig. 2
Fig. 2
Study Schemas

References

    1. D’Souza A, Zhu X. Current uses and outcomes of hematopoietic stem cell transplantation (HCT): Center for International Blood and Marrow Transplant research (CIBMTR). Summary slides. 2016.
    1. World Health Organization . Haematopoietic stem cell transplantation HSCtx. 2015.
    1. Frey P, Stinson T, Siston A, Knight SJ, Ferdman E, Traynor A, et al. Lack of caregivers limits use of outpatient hematopoietic stem cell transplant program. Bone Marrow Transplant. 2002;30:741–748. doi: 10.1038/sj.bmt.1703676.
    1. Barban A, Coracin FL, Musqueira PT, Barban A, Ruiz LP, Ruiz MA, et al. Analysis of the feasibility of early hospital discharge after autologous hematopoietic stem cell transplantation and the implications to nursing care. Rev Bras Hematol Hemoter. 2014;36:264–268. doi: 10.1016/j.bjhh.2014.05.003.
    1. Martino M, Montanari M, Bruno B, Console G, Irrera G, Messina G, et al. Autologous hematopoietic progenitor cell transplantation for multiple myeloma through an outpatient program. Expert Opin Biol Ther. 2012;12:1449–1462. doi: 10.1517/14712598.2012.707185.
    1. Cooke L, Grant M, Eldredge DH, Maziarz RT, Nail LM. Informal caregiving in hematopoietic blood and marrow transplant patients. Eur J Onc Nur. 2011;15:500–507. doi: 10.1016/j.ejon.2011.01.007.
    1. Armoogum J, Richardson A, Armes J. A survey of the supportive care needs of informal caregivers of adult bone marrow transplant patients. Support Care Cancer. 2013;21:977–986. doi: 10.1007/s00520-012-1615-4.
    1. Beattie S, Lebel S. The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psychooncology. 2011;20:1137–1150. doi: 10.1002/pon.1962.
    1. Von AD, Spath M, Nielsen A, Fife B. The caregiver’s role across the bone marrow transplantation trajectory. Cancer Nurs. 2015;39:E12–E19.
    1. Fife BL, Monahan PO, Abonour R, Woods LI, Stump TE. Adaptation of family caregivers during the acute phase of adult BMT. Bone Marrow Transplant. 2009;43:959–966. doi: 10.1038/bmt.2008.405.
    1. Sabo B, McLeod D, Couban S. The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: opening Pandora’s box. Cancer Nurs. 2013;36:29–40. doi: 10.1097/NCC.0b013e31824fe223.
    1. Regan T, Lambert SD, Kelly B. Uptake and attrition in couple-based interventions for cancer: perspectives from the literature. Psycho-Oncology. 2013;22:2639–2647. doi: 10.1002/pon.3342.
    1. Manne S, Badr H. Intimacy and relationship processes in couples’ psychosocial adaptation to cancer. Cancer. 2008;112:2541–2555. doi: 10.1002/cncr.23450.
    1. Hopkinson JB, Brown JC, Okamoto I, Addington-Hall JM. The effectiveness of patient-family carer (couple) intervention for the management of symptoms and other health-related problems in people affected by cancer: a systematic literature search and narrative review. J Pain Symptom Manage. 2012;43:111–142. doi: 10.1016/j.jpainsymman.2011.03.013.
    1. Regan TW, Lambert SD, Girgis A, Kelly B, Kayser K, Turner J (2012). Do couple-based interventions make a difference for couples affected by cancer?: a systematic review. BMC Cancer. 2012. . Accessed 28 Jan 2017.
    1. Lafaye A, Petit S, Richaud P, Houédé N, Bague F, Cousson-Gélie F. Dyadic effects of coping strategies on emotional state and quality of life in prostate cancer patients and their spouses. Psychooncology. 2014;23:797–803. doi: 10.1002/pon.3483.
    1. Lambert SD, Girgis A, Turner J, McElduff P, Kayser K, Vallentine P. A pilot randomized controlled trial of the feasibility of a self-directed coping skills intervention for couples facing prostate cancer: rationale and design. Health Qual Life Outcomes. 2012;10:119. doi: 10.1186/1477-7525-10-119.
    1. Traa MJ, De Vries J, Bodenmann G, Den Oudsten BL. Dyadic coping and relationship functioning in couples coping with cancer: a systematic review. Br J Health Psychol. 2015;20:85–114. doi: 10.1111/bjhp.12094.
    1. Lambert SD, McElduff P, Girgis A, Levesque JV, Regan TW, Turner J, et al. A pilot, multisite, randomized controlled trial of a self-directed coping skills training intervention for couples facing prostate cancer: accrual, retention, and data collection issues. Support Care Cancer. 2016;24:711–722. doi: 10.1007/s00520-015-2833-3.
    1. Laudenslager ML, Simoneau TL, Kilbourn K, Natvig C, Philips S, Spradley J, et al. A randomized control trial of a psychosocial intervention for caregivers of allogeneic hematopoietic stem cell transplant patients: effects on distress. Bone Marrow Transplant. 2015;50:1110–1118. doi: 10.1038/bmt.2015.104.
    1. Bevans M, Castro K, Prince P, Shelburne N, Prachenko O, Loscalzo M, et al. An individualized dyadic problem-solving education intervention for patients and family caregivers during allogeneic hematopoietic stem cell transplantation. A feasibility study. Cancer Nurs. 2010;33:E24–E32. doi: 10.1097/NCC.0b013e3181be5e6d.
    1. Bodenmann G, Hilpert P, Nussbeck FW, Bradbury TN. Enhancement of couples’ communication and dyadic coping by a self-directed approach: a randomized controlled trial. J Consult Clin Psychol. 2014;82:580–591. doi: 10.1037/a0036356.
    1. Lambert SD, Girgis A, McElduff P, Turner J, Levesque JV, Kayser K, et al. A parallel-group, randomised controlled trial of a multimedia, self-directed, coping skills training intervention for patients with cancer and their partners: design and rationale. BMJ Open. 2013;3. .
    1. Jim HS, Quinn GP, Gwede CK, Cases MG, Barata A, Cessna J, et al. Patient education in allogeneic hematopoietic cell transplant: what patients wish they had known about quality of life. Bone Marrow Transplant. 2014;49:299–303. doi: 10.1038/bmt.2013.158.
    1. Lambert SD, Girgis A, Turner J, Regan T, Candler H, Britton B, et al. “You need something like this to give you guidelines on what to do”: patients’ and partners’ use and perceptions of a self-directed coping skills training resource. Support Care Cancer. 2013;21:3451–3460. doi: 10.1007/s00520-013-1914-4.
    1. Dworkin SL, Pinto RM, Hunter J, Rapkin B, Remien RH. Keeping the spirit of community partnerships alive in the scale up of HIV/AIDS prevention: critical reflections on the roll out of DEBI (diffusion of effective behavioral interventions) Am J Community Psychol. 2008;42:51–59. doi: 10.1007/s10464-008-9183-y.
    1. McKleroy VS, Galbraith JS, Cummings B, Jones P, Harshbarger C, Collins C, et al. Adapting evidence-based behavioral interventions for new settings and target populations. AIDS Educ Prev. 2006;18:59–73. doi: 10.1521/aeap.2006.18.supp.59.
    1. Meissner HI. Use of qualitative methods to ensure acceptability of interventions. J Public Health Dent. 2011;71:S83. doi: 10.1111/j.1752-7325.2011.00225.x.
    1. Monaghan M, Sanders RE, Kelly KP, Cogen FR, Streisand R. Using qualitative methods to guide clinical trial design: parent recommendations for intervention modification in type 1 diabetes. J Fam Psychol. 2011;25:868–872. doi: 10.1037/a0024178.
    1. Murtagh MJ, Thomson RG, May CR, Rapley T, Heaven BR, Graham RH, et al. Qualitative methods in a randomised controlled trial: the role of an integrated qualitative process evaluation in providing evidence to discontinue the intervention in one arm of a trial of a decision support tool. Qual Saf Health Care. 2007;16:224–229. doi: 10.1136/qshc.2006.018499.
    1. Eldredge DH, Nail LM, Maziarz RT, Hansen LK, Ewing D, Archbold PG. Explaining family caregiver role strain following autologous blood and marrow transplantation. J Psychosoc Oncol. 2006;24:53–74. doi: 10.1300/J077v24n03_03.
    1. MSKCC . Blood and marrow transplant. Clinical care guidelines for allogeneic patients. 2015.
    1. MSKCC . Low microbial diet. 2015.
    1. Kvale S, Brinkmann S. Interviews: learning the craft of qualitative research interviewing. 2. Thousand Oaks: Sage Publications, Inc; 2009.
    1. Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62:107–115. doi: 10.1111/j.1365-2648.2007.04569.x.
    1. Chen EK, Reid MC, Parker SJ, Pillemer K. Tailoring evidence-based interventions for new populations: a method for program adaptation through community engagement. Eval Health Prof. 2013;36:73–92. doi: 10.1177/0163278712442536.
    1. Lincoln YS, Guba EG. Naturalistic inquiry Vol. 75. Newbury Park: Sage Publications, Inc.; 1985.
    1. Morse JM, Barrett M, Mayan M, Olson K, Spiers J. Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Methods. 2002;1:13–22. doi: 10.1177/160940690200100202.
    1. Gemmill R, Cooke L, Williams AC, Grant M. Informal caregivers of hematopoietic cell transplant patients. A review and recommendations for interventions and research. Cancer Nurs. 2011;34:E13–E21. doi: 10.1097/NCC.0b013e31820a592d.
    1. Fife BL, Weaver MT, Cook WL, Stump TT. Partner interdependence and coping with life-threatening illness: the impact on dyadic adjustment. J Fam Psychol. 2013;27:702–711. doi: 10.1037/a0033871.
    1. Choi CWJ, Stone RA, Kim KH, Ren D, Schulz R, Given CW, et al. Group-based trajectory modeling of caregiver psychological distress over time. Ann Behav Med. 2012;44:73–84. doi: 10.1007/s12160-012-9371-8.
    1. Simoneau TL, Mikulich-Gilbertson SK, Natvig C, Kilbourn K, Spradley J, Grzywa-Cobb R, et al. Elevated peri-transplant distress in caregivers of allogeneic blood or marrow transplant patients. Psychooncology. 2013;22:2064–2070. doi: 10.1002/pon.3259.

Source: PubMed

스폰서 및 공동 작업자

건강 상태

약물 개입

3
구독하다