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Published in: BMC Health Services Research 1/2018

Open Access 01-12-2018 | Study protocol

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

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

Published in: BMC Health Services Research | Issue 1/2018

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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).
Literature
1.
go back to reference 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. http://www.cibmtr.org. Accessed 26 May 2017. 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. http://​www.​cibmtr.​org. Accessed 26 May 2017.
3.
go back to reference 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;30:741–8.CrossRefPubMed 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;30:741–8.CrossRefPubMed
4.
go back to reference 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;36:264–8.CrossRefPubMedPubMedCentral 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;36:264–8.CrossRefPubMedPubMedCentral
5.
go back to reference 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;12:1449–62.CrossRefPubMed 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;12:1449–62.CrossRefPubMed
6.
go back to reference Cooke L, Grant M, Eldredge DH, Maziarz RT, Nail LM. Informal caregiving in hematopoietic blood and marrow transplant patients. Eur J Onc Nur. 2011;15:500–7.CrossRef Cooke L, Grant M, Eldredge DH, Maziarz RT, Nail LM. Informal caregiving in hematopoietic blood and marrow transplant patients. Eur J Onc Nur. 2011;15:500–7.CrossRef
7.
go back to reference 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;21:977–86.CrossRefPubMed 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;21:977–86.CrossRefPubMed
8.
go back to reference Beattie S, Lebel S. The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psychooncology. 2011;20:1137–50.CrossRefPubMed Beattie S, Lebel S. The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psychooncology. 2011;20:1137–50.CrossRefPubMed
9.
go back to reference Von AD, Spath M, Nielsen A, Fife B. The caregiver’s role across the bone marrow transplantation trajectory. Cancer Nurs. 2015;39:E12–9. Von AD, Spath M, Nielsen A, Fife B. The caregiver’s role across the bone marrow transplantation trajectory. Cancer Nurs. 2015;39:E12–9.
10.
go back to reference 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;43:959–66.CrossRefPubMed 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;43:959–66.CrossRefPubMed
11.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
12.
go back to reference Regan T, Lambert SD, Kelly B. Uptake and attrition in couple-based interventions for cancer: perspectives from the literature. Psycho-Oncology. 2013;22:2639–47.CrossRefPubMed Regan T, Lambert SD, Kelly B. Uptake and attrition in couple-based interventions for cancer: perspectives from the literature. Psycho-Oncology. 2013;22:2639–47.CrossRefPubMed
14.
go back to reference 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;43:111–42.CrossRefPubMed 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;43:111–42.CrossRefPubMed
16.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
18.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
19.
go back to reference 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;24:711–22.CrossRefPubMed 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;24:711–22.CrossRefPubMed
20.
go back to reference 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;50:1110–8.CrossRefPubMedPubMedCentral 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;50:1110–8.CrossRefPubMedPubMedCentral
21.
go back to reference 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:E24–32.CrossRefPubMedPubMedCentral 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:E24–32.CrossRefPubMedPubMedCentral
22.
go back to reference 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;82:580–91.CrossRefPubMed 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;82:580–91.CrossRefPubMed
24.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
25.
go back to reference 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;21:3451–60.CrossRefPubMed 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;21:3451–60.CrossRefPubMed
26.
go back to reference 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;42:51–9.CrossRefPubMedPubMedCentral 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;42:51–9.CrossRefPubMedPubMedCentral
27.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
28.
go back to reference Meissner HI. Use of qualitative methods to ensure acceptability of interventions. J Public Health Dent. 2011;71:S83.CrossRefPubMed Meissner HI. Use of qualitative methods to ensure acceptability of interventions. J Public Health Dent. 2011;71:S83.CrossRefPubMed
29.
go back to reference 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;25:868–72.CrossRefPubMed 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;25:868–72.CrossRefPubMed
30.
go back to reference 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;16:224–9.CrossRefPubMedPubMedCentral 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;16:224–9.CrossRefPubMedPubMedCentral
31.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
34.
go back to reference Kvale S, Brinkmann S. Interviews: learning the craft of qualitative research interviewing. 2nd ed. Thousand Oaks: Sage Publications, Inc; 2009. Kvale S, Brinkmann S. Interviews: learning the craft of qualitative research interviewing. 2nd ed. Thousand Oaks: Sage Publications, Inc; 2009.
35.
36.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
37.
go back to reference Lincoln YS, Guba EG. Naturalistic inquiry Vol. 75. Newbury Park: Sage Publications, Inc.; 1985. Lincoln YS, Guba EG. Naturalistic inquiry Vol. 75. Newbury Park: Sage Publications, Inc.; 1985.
38.
go back to reference 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.CrossRef 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.CrossRef
39.
go back to reference 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:E13–21.CrossRefPubMedPubMedCentral 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:E13–21.CrossRefPubMedPubMedCentral
40.
go back to reference 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;27:702–11.CrossRefPubMed 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;27:702–11.CrossRefPubMed
41.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
42.
go back to reference 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;22:2064–70.CrossRefPubMedPubMedCentral 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;22:2064–70.CrossRefPubMedPubMedCentral
Metadata
Title
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
Authors
Tammy Son
Sylvie Lambert
Ann Jakubowski
Barbara DiCicco-Bloom
Carmen G. Loiselle
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2018
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-018-3483-1

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