Recovering together: building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; a feasibility study

Sarah Bannon, Ethan G Lester, Melissa V Gates, Jessica McCurley, Ann Lin, Jonathan Rosand, Ana-Maria Vranceanu, Sarah Bannon, Ethan G Lester, Melissa V Gates, Jessica McCurley, Ann Lin, Jonathan Rosand, Ana-Maria Vranceanu

Abstract

Background: A stroke is a sudden, life-altering event with potentially devastating consequences for survivors and their loved ones. Despite advances in endovascular and neurocritical care approaches to stroke treatment and recovery, there remains a considerable unmet need for interventions targeting the emotional impact of stroke for both patients and their informal caregivers. This is important because untreated emotional distress becomes chronic and negatively impacts quality of life in both patients and caregivers. Our team previously used mixed methods to iteratively develop a six-session modular dyadic intervention to prevent chronic emotional distress in patients with stroke and their informal caregivers called "Recovering Together" (RT) using feedback from dyads and the medical team. The aim of the current study is to test the feasibility of recruitment, acceptability of screening and randomization methods, acceptability of RT, satisfaction with RT, feasibility of the assessment process at all time points, and acceptability of outcome measures. Secondarily, we aimed to explore within-treatment effect sizes and change in clinically significant symptoms of depression, anxiety, and post-traumatic stress (PTS). The larger goal was to strengthen methodological rigor before a subsequent efficacy trial.

Methods: We conducted a feasibility randomized controlled trial to evaluate the RT intervention relative to minimally enhanced usual care (MEUC) in stroke patients admitted to a Neurosciences Intensive Care Unit (Neuro-ICU). Dyads were enrolled within 1 week of hospitalization if they met specific eligibility criteria. Assessments were done via paper and pencil at baseline, and electronically via REDCap or over the phone at post-intervention (approximately 6 weeks after baseline), and 3 months later. Assessments included demographics, resiliency intervention targets (mindfulness, coping, self-efficacy, and interpersonal bond), and emotional distress (depression, anxiety, and PTS). Primary outcomes were feasibility and acceptability markers. Secondary outcomes were depression, anxiety, PTS, mindfulness, coping, self-efficacy, and interpersonal bond.

Results: We consented 20 dyads, enrolled 17, and retained 16. Although many patients were missed before we could approach them, very few declined to participate or dropped out once study staff made initial contact. Feasibility of enrollment (87% of eligible dyads enrolled), acceptability of screening, and randomization (all RT dyads retained after randomization) were excellent. Program satisfaction (RT post-test M = 11.33/12 for patients M = 12/12 for caregivers), and adherence to treatment sessions (six of seven RT dyads attending 4/6 sessions) were high. There were no technical difficulties that affected the delivery of the intervention. There was minimal missing data. For both patients and caregivers, participation in RT was generally associated with clinically significant improvement in emotional distress symptoms from baseline to post-test. Participation in MEUC was associated with clinically significant worsening in emotional distress. Although some of the improvement in emotional distress symptoms decreased in the RT group between post-test to 3 months, these changes were not clinically significant. RT was also associated with substantial decrease in frequency of individuals who met criteria for clinically significant symptoms, while the opposite was true for MEUC. There were many lessons that informed current and future research.

Conclusions: This study provided evidence of feasibility and signal of improvement in RT, as well as necessary methodological changes to increase recruitment efficiency before the future hybrid efficacy-effectiveness trial.

Trial registration: NCT02797509.

Keywords: Anxiety; Caregivers; Depression; Dyads; Intervention; Patient; Post traumatic stress; Stroke; Telehealth; Video.

Conflict of interest statement

Competing interestsThe authors declare that they have no competing interests.

© The Author(s) 2020.

Figures

Fig. 1
Fig. 1
CONSORT

References

    1. Mozaffarian D, Benjamin EJ, Go AS, Arnett DK, Blaha MJ, Cushman M, et al. Executive summary: heart disease and stroke statistics—2015 update: a report from the American Heart Association. Circulation. 2015;131(4):434–441.
    1. Feigin VL, Forouzanfar MH, Krishnamurthi R, Mensah GA, Connor M, Bennett DA, et al. Global and regional burden of stroke during 1990–2010: findings from the Global Burden of Disease Study 2010. The Lancet. 2014;383(9913):245–255.
    1. Dowdy DW, Eid MP, Sedrakyan A, Mendez-Tellez PA, Pronovost PJ, Herridge MS, et al. Quality of life in adult survivors of critical illness: a systematic review of the literature. Intensive care medicine. 2005;31(5):611–620.
    1. Hofhuis JG, Spronk PE, van Stel HF, Schrijvers GJ, Rommes JH, Bakker J. The impact of critical illness on perceived health-related quality of life during ICU treatment, hospital stay, and after hospital discharge: a long-term follow-up study. Chest. 2008;133(2):377–385.
    1. Hwang DY, Yagoda D, Perrey HM, Currier PF, Tehan TM, Guanci M, et al. Anxiety and depression symptoms among families of adult intensive care unit survivors immediately following brief length of stay. Journal of critical care. 2014;29(2):278–282.
    1. Godwin KM, Ostwald SK, Cron SG, Wasserman J. Long-term health related quality of life of survivors of stroke and their spousal caregivers. J Neurosci Nurs. 2013;45(3):147.
    1. Shaffer KM, Riklin E, Stagl J, Rosand J, Vranceanu A-M. Mindfulness and coping are inversely related to psychiatric symptoms in patients and informal caregivers in the neuroscience ICU: implications for clinical care. Crit Care Med. 2016;44(11):2028.
    1. Shaffer KM, Riklin E, Jacobs JM, Rosand J, Vranceanu A-M. Psychosocial resiliency is associated with lower emotional distress among dyads of patients and their informal caregivers in the neuroscience intensive care unit. Journal of critical care. 2016;36:154–159.
    1. Shaffer KM, Jacobs JM, Coleman JN, Temel JS, Rosand J, Greer JA, et al. Anxiety and depressive symptoms among two seriously medically ill populations and their family caregivers: a comparison and clinical implications. Neurocritical care. 2017;27(2):180–186.
    1. Choi KW, Shaffer KM, Zale EL, Funes CJ, Koenen KC, Tehan T, et al. Early risk and resiliency factors predict chronic PTSD in caregivers of patients admitted to a neuroscience intensive care unit. Crit Care Med. 2018;46(5):713.
    1. Denno MS, Gillard PJ, Graham GD, DiBonaventura MD, Goren A, Varon SF, et al. Anxiety and depression associated with caregiver burden in caregivers of stroke survivors with spasticity. Arch Phys Med Rehab. 2013;94(9):1731–1736.
    1. Wright LK, Hickey JV, Buckwalter KC, Hendrix SA, Kelechi T. Emotional and physical health of spouse caregivers of persons with Alzheimer’s disease and stroke. Journal of Advanced Nursing. 1999;30(3):552–563.
    1. Zale EL, Heinhuis TJ, Tehan T, Salgueiro D, Rosand J, Vranceanu A-M. Resiliency is independently associated with greater quality of life among informal caregivers to neuroscience intensive care unit patients. General hospital psychiatry. 2018;52:27–33.
    1. Vranceanu A-M. Burnout and Resiliency Among Neurocritical Care Staff; Potential Solutions to A Growing Problem. Neurocritical Care. 2019:1-2.
    1. McCurley JL, Funes CJ, Zale EL, Lin A, Jacobo M, Jacobs JM, et al. Preventing chronic emotional distress in stroke survivors and their informal caregivers. Neurocritical Care. 2019;30(3):581–589.
    1. Lin A, Vranceanu A-M, Guanci M, Salgueiro D, Rosand J, Zale EL. Gender differences in longitudinal associations between intimate care, resiliency, and depression among informal caregivers of patients surviving the neuroscience intensive care unit. Neurocritical Care. 2019:1–10.
    1. Bakas T, Burgener SC. Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors. Topics Stroke Rehab. 2002;9(1):34–45.
    1. Carod-Artal FJ, Egido JA. Quality of life after stroke: the importance of a good recovery. Cerebrovasc Dis. 2009;27(Suppl. 1):204–214.
    1. Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol Series B. 2003;58(2):P112–PP28.
    1. Cameron JI, Cheung AM, Streiner DL, Coyte PC, Stewart DE. Stroke survivors’ behavioral and psychologic symptoms are associated with informal caregivers’ experiences of depression. Arch Phys Med Rehab. 2006;87(2):177–183.
    1. Beach SR, Schulz R, Williamson GM, Miller LS, Weiner MF, Lance CE. Risk factors for potentially harmful informal caregiver behavior. Journal of the American Geriatrics Society. 2005;53(2):255–261.
    1. Palmer S, Glass TA. Family function and stroke recovery: a review. Rehabilitation psychology. 2003;48(4):255.
    1. Perrin PB, Heesacker M, Hinojosa MS, Uthe CE, Rittman MR. Identifying at-risk, ethnically diverse stroke caregivers for counseling: A longitudinal study of mental health. Rehabilitation Psychology. 2009;54(2):138.
    1. Bakas T, McCarthy M, Miller ET. Update on the state of the evidence for stroke family caregiver and dyad interventions. Stroke. 2017;48(5):e122–e1e5.
    1. Bakas T, Clark PC, Kelly-Hayes M, King RB, Lutz BJ, Miller EL. Evidence for stroke family caregiver and dyad interventions: a statement for healthcare professionals from the American Heart Association and American Stroke Association. Stroke. 2014;45(9):2836–2852.
    1. Titler MG, Visovatti MA, Shuman C, Ellis KR, Banerjee T, Dockham B, et al. Effectiveness of implementing a dyadic psychoeducational intervention for cancer patients and family caregivers. Supportive Care in Cancer. 2017;25(11):3395–3406.
    1. Gitlin LN, Hodgson N, Jutkowitz E, Pizzi L. The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the tailored activity program. The American Journal of Geriatric Psychiatry. 2010;18(6):510–519.
    1. Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J, et al. A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis. The Lancet. 2013;382(9910):2069–2076.
    1. Nichols LO, Chang C, Lummus A, Burns R, Martindale-Adams J, Graney MJ, et al. The cost-effectiveness of a behavior intervention with caregivers of patients with Alzheimer's disease. Journal of the American Geriatrics Society. 2008;56(3):413–420.
    1. Meyers E, McCurley JL, Lester EL, Jacobo M, Rosand J, Vranceanu A-M. Building resiliency in dyads of patients admitted to the neuroscience intensive care unit and their family caregivers: Lessons learned from William and Laura. Cognitive aBehavioral Practice. 2019.
    1. Leon AC, Davis LL, Kraemer HC. The role and interpretation of pilot studies in clinical research. Journal of psychiatric research. 2011;45(5):626–629.
    1. Lancaster GA, Dodd S, Williamson PR. Design and analysis of pilot studies: recommendations for good practice. Journal of evaluation in clinical practice. 2004;10(2):307–312.
    1. Onken LS, Blaine JD, Battjes RJ. Behavioral therapy research: a conceptualization of a process. 1997.
    1. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of biomedical informatics. 2009;42(2):377–381.
    1. Meyers EE, Shaffer KM, Gates M, Lin A, Rosand J, Vranceanu A-M. Baseline resilience and posttraumatic symptoms in dyads of neurocritical patients and their informal caregivers: a prospective dyadic analysis. Psychosomatics. 2020;61(2):135–144.
    1. Meyers EE, Presciutti A, Shaffer KM, Gates M, Lin A, Rosand J, et al. The impact of resilience factors and anxiety during hospital admission on longitudinal anxiety among dyads of neurocritical care patients without major cognitive impairment and their family caregivers. Neurocritical Care. 2020:1–11.
    1. Meyers E, Lin A, Lester E, Shaffer K, Rosand J, Vranceanu A-M. Baseline resilience and depression symptoms predict trajectory of depression in dyads of patients and their informal caregivers following discharge from the Neuro-ICU. General Hospital Psychiatry. 2020;62:87–92.
    1. Herrero M, Blanch J, Peri J, De Pablo J, Pintor L, Bulbena A. A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General Hospital Psychiatry. 2003;25(4):277–283.
    1. Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the hospital anxiety and depression scale: an updated literature review. Journal of psychosomatic research. 2002;52(2):69–77.
    1. Puhan MA, Frey M, Büchi S, Schünemann HJ. The minimal important difference of the hospital anxiety and depression scale in patients with chronic obstructive pulmonary disease. Health and quality of life outcomes. 2008;6(1):46.
    1. Lemay KR, Tulloch HE, Pipe AL, Reed JL. Establishing the minimal clinically important difference for the hospital anxiety and depression scale in patients with cardiovascular disease. Journal of cardiopulmonary rehabilitation and prevention. 2018.
    1. Weathers FW, Litz BT, Herman DS, Huska JA, Keane TM, editors. The PTSD checklist (PCL): reliability, validity, and diagnostic utility. annual convention of the international society for traumatic stress studies, San Antonio, TX; 1993: San Antonio, TX.
    1. Bressler R, Erford BT, Dean S. A systematic review of the posttraumatic stress disorder checklist (PCL) Journal of Counseling & Development. 2018;96(2):167–186.
    1. Blanchard EB, Jones-Alexander J, Buckley TC, Forneris CA. Psychometric properties of the PTSD Checklist (PCL) Behaviour research and therapy. 1996;34(8):669–673.
    1. Schwarzer R, Jerusalem M. Generalized Self-Efficacy scale. In J. Weinman, S. Wright, & M. Johnston, Measures in health psychology: a user’s portfolio. Causal and control beliefs Windsor. England: Nfer-Nelson; 1995.
    1. Chen G, Gully SM, Eden D. Validation of a new general self-efficacy scale. Organizational Res Methods. 2001;4(1):62–83.
    1. Carver CS. Measure of current status2006. Available from: .
    1. Feldman G, Hayes A, Kumar S, Greeson J, Laurenceau J-P. Mindfulness and emotion regulation: the development and initial validation of the Cognitive and Affective Mindfulness Scale-Revised (CAMS-R) Journal of psychopathology and behavioral assessment. 2007;29(3):177.
    1. Sauer S, Walach H, Schmidt S, Hinterberger T, Lynch S, Büssing A, et al. Assessment of mindfulness: review on state of the art. Mindfulness. 2013;4(1):3–17.
    1. Park T, Reilly-Spong M, Gross CR. Mindfulness: a systematic review of instruments to measure an emergent patient-reported outcome (PRO) Quality of Life Research. 2013;22(10):2639–2659.
    1. Wilhelm K, Parker G. The development of a measure of intimate bonds. Psychological medicine. 1988;18(1):225–234.
    1. Fisher J, Tran TD, Biggs B, Tran T. Validation of the intimate bonds measure for women who are pregnant or have recently given birth in V ietnam. Asia-Pacific Psychiatry. 2014;6(1):28–37.
    1. Devilly GJ, Borkovec TD. Psychometric properties of the credibility/expectancy questionnaire. Journal of behavior therapy and experimental psychiatry. 2000;31(2):73–86.
    1. Smeets RJ, Beelen S, Goossens ME, Schouten EG, Knottnerus JA, Vlaeyen JW. Treatment expectancy and credibility are associated with the outcome of both physical and cognitive-behavioral treatment in chronic low back pain. Clin J Pain. 2008;24(4):305–315.
    1. Attkisson CC, Greenfield T. The client satisfaction questionnaire (CSQ) scales. Outcome assessment in clinical practice. Baltimore, MD: Williams & Wilkins; 1995. pp. 2–10.
    1. Larsen DL, Attkisson CC, Hargreaves WA, Nguyen TD. Assessment of client/patient satisfaction: development of a general scale. Evaluation and program planning. 1979;2(3):197–207.
    1. Christensen LF, Gildberg FA, Sibbersen C, Skjoeth MM, Nielsen CT, Hansen JP. Disagreement in satisfaction between patients and providers in the use of videoconferences by depressed adults. Telemedicine and e-Health. 2019.
    1. Westenberg RF, Zale EL, Heinhuis TJ, Özkan S, Nazzal A, Lee S-G, et al. Does a brief mindfulness exercise improve outcomes in upper extremity patients? A randomized controlled trial. Clinical orthopaedics and related research. 2018;476(4):790.
    1. McCusker J, Cole MG, Yaffe M, Strumpf E, Sewitch M, Sussman T, et al. Adherence to a depression self-care intervention among primary care patients with chronic physical conditions: A randomised controlled trial. Health Education Journal. 2016;75(7):767–779.
    1. Sitzia J. How valid and reliable are patient satisfaction data? An analysis of 195 studies. International Journal for Quality in Health Care. 1999;11(4):319–328.
    1. Carroll KM, Rounsaville BJ. Bridging the gap: a hybrid model to link efficacy and effectiveness research in substance abuse treatment. Psychiatric services. 2003;54(3):333–339.
    1. Singal AG, Higgins PD, Waljee AK. A primer on effectiveness and efficacy trials. Clin Translational Gastroenterol. 2014;5(1):e45.
    1. Sebern MD, Whitlatch CJ. Dyadic relationship scale: A measure of the impact of the provision and receipt of family care. The Gerontologist. 2007;47(6):741–751.
    1. Vatter S, Stanmore E, Clare L, McDonald KR, McCormick SA, Leroi I. Care burden and mental ill health in spouses of people with Parkinson disease dementia and Lewy body dementia. J Geriatric Psychiatry Neurol. 2020;33(1):3–14.
    1. Roberts SB, Bonnici DM, Mackinnon AJ, Worcester MC. Psychometric evaluation of the Hospital Anxiety and Depression Scale (HADS) among female cardiac patients. British journal of health psychology. 2001;6(4):373–383.
    1. Wade DM, Mouncey PR, Richards-Belle A, Wulff J, Harrison DA, Sadique MZ, et al. Effect of a nurse-led preventive psychological intervention on symptoms of posttraumatic stress disorder among critically ill patients: a randomized clinical trial. Jama. 2019;321(7):665–675.

Source: PubMed

Sponsors et collaborateurs

Les conditions médicales

Interventions en matière de drogue

3
S'abonner