By: Nicole Amoyal PhD
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1 A Qualitative Mobile Intervention Development Study for Improving Symptoms of Depression, Anxiety, and Intimacy in Caregivers of Patients Receiving Bone Marrow Transplants By: Nicole Amoyal PhD
2 DISSERVICE TO OUR CAREGIVERS? Evidence-based treatment 1 Depression, Anxiety, Stress Management Integral in-person interventions; limited in scope and resources Technology allows for dissemination
3
4 CAREGIVERS ARE SILENT PATIENTS Bone Marrow Transplant (BMT) caregivers 1,2,3,4,5,6 Fatigue Depression Insomnia Sexual Dysfunction
5 PSYCHOEDUCATION AND PACED RESPIRATION AND RELAXATION (PEPRR) PEPRR: Laudenslager and Colleagues 1 Cognitive Behavioral Stress Management (CBSM; Antoni) 8, semi-structured individual sessions 1 hour sessions
6 PEPRR 1. Introduction to Stress 2. Stress and Mind-Body 3. Thoughts and Stress 4. Coping with Stress 5. Energy and Stamina 6. Coping with Fears 7. Communicating Needs 8. Get Support
7 BACKGROUND RCT of PEPRR for BMT caregivers indicated significant reductions in 1 : Perceived stress (PSS; ES = 0.39; p=0.039) Anxiety (STAI; ES = 0.66; p= ) Depression (CESD; ES = 0.46; p= 0.016)
8 SPECIFIC AIM To adapt, enhance, refine, and expand the content of PEPRR into a mobilized stress management program (Pep-Pal) for caregivers Criterion for Success: Pep-Pal will meet standards in 5 domains per expert review and qualitative feedback: a. LOOK AND FEEL b. CONTENT c. ACCEPTABILITY d. USABILITY e. FEASIBILITY
9 Pep-Pal 10 Videos 1. Introduction to Pep-pal 2. Introduction to Stress 3. Stress and Mind-Body 4. Thoughts and Stress 5. Coping with Stress 6. Energy and Stamina 7. Coping with Fears 8. Communicating Needs 9. Get Support 10. Intimacy and Relationships*
10 Pep-Pal Mini-Pep Videos Relaxation Gratitude Relationship Enhancement
11 METHODS STUDY FLOW: 3 STEPS 1 Stakeholder Groups Mock up Pep-Pal Video 2 Focus Groups Introduction Session Session 1 3 Individual Interviews Intro + Session 1 Sessions 2-9
12 METHODS STUDY FLOW: 3 STEPS 1 Stakeholder Groups Mock up Pep-Pal Video 2 Focus Groups Introduction Session Session 1 3 Individual Interviews Intro + Session 1 Sessions 2-9
13 STAKEHOLDER GROUPS Group 1 Professional Stakeholder Group (N = 20) Groups 2 and 3 Patient and Caregiver Stakeholder Groups (N = 9) Watched 1 session Provided open-ended feedback
14 RESULTS: STAKEHOLDER GROUPS Before After Change Main Character Separate Intro and Session 1 Additional Features of Pep-Pal Introduce Team Add Human Content to Session One Encourage Caregiver to Ask for Support from Providers
15 METHODS STEPS 2 AND 3 1 Stakeholder Groups Video: Mock up Pep-Pal 2 Focus Groups Video: Introduction to Pep-Pal Video: Session 1 3 Individual Interviews Video: Intro, Session 1 Video: Sessions 2-9
16 RECRUITMENT AND ELIGIBILITY Convenience sampling Referred by BMT clinic Approached over phone Inclusion Caregivers of patients receiving BMT Ability to speak/ read in English At least 18 years of age Exclusion Hx of psychiatric or medical condition preventing participation
17 METHODS STEPS 2 AND 3 1 Stakeholder Groups Video: Mock up Pep-Pal Video 2 Focus Groups Video: Introduction to Pep-Pal Video: Session 1 3 Individual Interviews Video: Intro, Session 1 Video: Sessions 2-9
18 METHODS Two Focus Groups Semi-structured 60 minutes each Audio-recorded Watch Introduction + Session 1
19 RESULTS: FOCUS GROUPS FEEDBACK Caregivers (N=6) Look and Majority prefer mix characters Feel animation ( keeps it light ) human ( provides credibility ) 100% Women, White, Spousal Ages Attrition FG 1:2/4 FG 2: 4/4: Is there something I can do online? Content Helps you become aware of what s going on with your body. Acceptability I wish it was available now. Usability Include more step-by-step instruction in the body scan video. Feasibility Would like reminders to complete the sessions throughout week
20 FINALIZE VIDEO DEVELOPMENT
21 RELIABILITY 2 PEPRR Interventionists reviewed Pep-Pal videos Independently rated Pep-Pal videos as covering all topics from PEPRR
22 METHODS STUDY FLOW: 3 STEPS 1 Stakeholder Groups Video: Mock up Pep-Pal Video 2 Focus Groups Video: Introduction to Pep-Pal Video: Session 1 3 Individual Interviews Video: Intro,Session 1 Video: Sessions 2-9
23 SAMPLE 9 Spousal Caregivers 7 Women, 2 Men 100% White Age Range 34-69; M= 59.3 Semi-structured interview 90 minutes each Audio recorded, transcribed, coded
24 QUALITATIVE INTERVIEWS RESULTS Preferred Mode of Viewing: Videos Watched Introduction + Session 1 Participants 1,2,3 Participants 4,5,6 Participants 7,8,9 Sessions: 1,2,3 Sessions: 4,5,6 Sessions: 7,8,9
25 QUALITATIVE ANALYSES Currently in coding stages Conventional content analysis 2 independent coders Preliminary themes
26 RESULTS: INDIVIDUAL INTERVIEWS Look and Feel* Content Preliminary Themes (N=9) Prefer Mix of Animation and Human Character Want more specific caregiver examples INTIMACY: That was brave information and I am really impressed. I really liked that. That would have been helpful so thank you. Acceptability* You know you spend a lot of time in hospitals and waiting rooms and doctor s offices and I think to have something like that to just review would be great. Usability* Feasibility* Liked that program was not linear, most meaningful sessions Make videos downloadable, do not rely on internet *Saturation
27 LIMITATIONS All spousal, White caregivers Sampling Bias Sample Size Interviewer Bias
28 FUTURE DIRECTIONS Finalize Mobilized Website and Videos Career Development Award Application for Pilot RCT Mixed Methods Test with other caregiver populations Phase I Clinical Trials Dementia Comparative Effectiveness Trials
29 ACKNOWLEDGEMENTS Jean Kutner MD, MSPH Mark Laudenslager PhD Kristin Kilbourn PhD, MPH Therese Simoneau PhD Tanisha Joshi PhD Kelly Blanchard MS Timothy Sannes PhD Joseph Greer PhD Jennifer Temel MD Areej El-Jawahri MD Don Dizon MD Elyse Park PhD Research Supported in part by NIA T32AG and PCORI CE
30 REFERENCES 1. Laudenslager, ML, Simoneau, TL, Kilbourn, K, Natvig, C, Phillips, S, Spradley, J, Benitex, P, McSweeney, P, Mikulich-Gilbertson, SK: A randomized control trial of a psychosocial intervention for caregivers of allogeneic hematopoietic stem cell transplant patients: effects on distress. Bone Marrow Transplantation 1-9, El-Jawathri, AR, Traeger, LN, Kuzmuk, K, et al: Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation. Cancer 121: , Armoogym J, Richardson A, Armes J (2012) A survey of the supportive care needs of informal caregivers of adult bone marrow transplant patients. 4. Fife BL, Monahan PO, Abonour R, Wood LL, Stump TE (2008) Adaptation of family caregivers during the acute phase of adult BMT. Bone Marrow Transplantation 42: Gaston-Johansson F, Lachica EM, Fall-Dickson JM, Kennedy MJ (2004) Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum 31(6): Bishop MM, Beaumont JL, Hahn EA, Cella D, Andrykowski MA, Brady MJ, Horowitz MM, Sobocinski KA, Rizzo JD, Wingard JR (2007) Late effects of cancer and hematopoietic stem cell transplantation on spouses or partners compared with survivors and survivor matched controls. J Clin Oncol 25(11):
31 QUESTIONS
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