Skip to main content

Advertisement

SpringerLink
Log in

CAREGIVER Randomized Trial of Two Mindfulness Methods to Improve the Burden and Distress of Caring for Persons with Cirrhosis

  • Original Article
  • Published:
Digestive Diseases and Sciences Aims and scope Submit manuscript

Abstract

Background

Patient caregivers experience burden and distress that negatively impacts health-related quality of life (HRQOL). Mindfulness may alleviate caregiver burden but randomized trials of mindfulness activities on caregiver burden and distress are lacking.

Methods

Caregivers for patients with advanced liver disease were recruited from the Universities of Michigan and Pennsylvania (12/2019–12/2021) and followed for 8 weeks. Participants were randomized 1:1:1 to: written emotional disclosure for 4 weeks, resilience training for 4 weeks, or control (no active intervention). All completed assessments at baseline, week 4 and 8. The primary outcome was change in the Zarit Caregiver Burden Index-12 (ZBI) at week 8. Secondary outcomes included changes at week 4 and 8 in the ZBI, distress thermometer (DT), HRQOL visual analog scale (VAS), and caregiver captivity index (CCI).

Results

Eighty seven caregivers were enrolled, 59(72%) completed the study. In unadjusted analyses at week 4, the burden measured by ZBI was not significantly different between arms, increasing by 0.6 ± 5.7 and 2.5 ± 5.2 points, for the written emotional disclosure and resilience training study arms, respectively, and by 2.9 ± 6.1 points in the control arm. At week 8, the non-significant ZBI change was − 1.0 ± 8.9, 2.8 ± 6.1, and 1.5 ± 7.4 for written emotional disclosure, resilience training, at week 8, respectively. The DT and VAS worsened in all arms, however, it worsened the least in the written emotional disclosure arm. In analyses adjusted for differences in baseline characteristics, the ZBI declined by − 4.21 ± 2.03(p = 0.04) in the emotional disclosure arm at week 4. This decrease was attenuated week 8, − 1.13 ± 2.6(p = 0.67). There were no significant differences in secondary outcomes save for resilience training reducing the CCI at week 4 by 1.36 ± 0.67(p = 0.04).

Conclusion

Written emotional disclosure may reduce caregiver burden in the short term among caregivers for patients with cirrhosis.

Registration: NCT04205396.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Tapper EB, Parikh ND. Mortality due to cirrhosis and liver cancer in the United States, 1999–2016: observational study. BMJ. 2018;362:k2817.

    Article  PubMed Central  PubMed  Google Scholar 

  2. Bajaj JS, Wade JB, Gibson DP, et al. The multi-dimensional burden of cirrhosis and hepatic encephalopathy on patients and caregivers. Am J Gastroenterol. 2011;106:1646–1653. https://doi.org/10.1038/ajg.2011.157. (PubMed PMID: 21556040).

    Article  PubMed Central  PubMed  Google Scholar 

  3. Thomson MJ, Lok AS, Tapper EB. Optimizing medication management for patients with cirrhosis: evidence-based strategies and their outcomes. Liver Int. 2018;38:1882–1890.

    Article  PubMed Central  PubMed  Google Scholar 

  4. Ufere NN, Donlan J, Indriolo T, et al. Burdensome transitions of care for patients with end-stage liver disease and their caregivers. Dig Dis Sci. 2020. https://doi.org/10.1007/s10620-020-06617-4. (PubMed PMID: 32964286).

    Article  PubMed  Google Scholar 

  5. Rakoski MO, McCammon RJ, Piette JD, et al. Burden of cirrhosis on older Americans and their families: analysis of the health and retirement study. Hepatology. 2012;55:184–191.

    Article  PubMed  Google Scholar 

  6. Bajaj JS, Ellwood M, Ainger T, et al. Mindfulness-based stress reduction therapy improves patient and caregiver-reported outcomes in cirrhosis. Clin Transl Gastroenterol. 2017;8:e108.

    Article  PubMed Central  PubMed  Google Scholar 

  7. Hareendran A, Devadas K, Sreesh S, et al. Quality of life, caregiver burden and mental health disorders in primary caregivers of patients with Cirrhosis. Liver Int. 2020;40:2939–2949.

    Article  CAS  PubMed  Google Scholar 

  8. Tapper EB, Kenney B, Nikirk S, Levine DA, Waljee AK. Animal naming test is associated with poor patient-reported outcomes and frailty in people with and without cirrhosis: a prospective cohort study. Clin Transl Gastroenterol. 2022;13:e00447. https://doi.org/10.14309/ctg.0000000000000447.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Hou RJ, Wong SYS, Yip BHK, et al. The effects of mindfulness-based stress reduction program on the mental health of family caregivers: a randomized controlled trial. Psychother Psychosomat. 2014;83:45–53.

    Article  Google Scholar 

  10. Whitebird RR, Kreitzer M, Crain AL, Lewis BA, Hanson LR, Enstad CJ. Mindfulness-based stress reduction for family caregivers: a randomized controlled trial. Gerontologist. 2013;53:676–686.

    Article  PubMed  Google Scholar 

  11. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311:1052–1060.

    Article  CAS  PubMed  Google Scholar 

  12. Pennebaker JW. The effects of traumatic disclosure on physical and mental health: the values of writing and talking about upsetting events. Int J Emerg Ment Health. 1999;1:9–18 (Epub 2001/03/03 PubMed PMID: 11227757).

    CAS  PubMed  Google Scholar 

  13. Pennebaker JW, Seagal JD. Forming a story: the health benefits of narrative. J Clin Psychol. 1999;55:1243–1254 (PubMed PMID: 11045774).

    Article  CAS  PubMed  Google Scholar 

  14. Petrie KJ, Booth RJ, Pennebaker JW. The immunological effects of thought suppression. J Pers Soc Psychol. 1998;75:1264–1272 (Epub 1998/12/29 PubMed PMID: 9866186).

    Article  CAS  PubMed  Google Scholar 

  15. Esterling BA, Antoni MH, Fletcher MA, Margulies S, Schneiderman N. Emotional disclosure through writing or speaking modulates latent Epstein-Barr virus antibody titers. J Consult Clin Psychol. 1994;62:130–140 (Epub 1994/02/01 PubMed PMID: 8034815).

    Article  CAS  PubMed  Google Scholar 

  16. Greenberg MA, Wortman CB, Stone AA. Emotional expression and physical health: revising traumatic memories or fostering self-regulation? J Pers Soc Psychol. 1996;71:588–602. https://doi.org/10.1037//0022-3514.71.3.588. (Epub 1996/09/01 PubMed PMID: 8831163).

    Article  CAS  PubMed  Google Scholar 

  17. Seligman ME, Steen TA, Park N, Peterson C. Positive psychology progress: empirical validation of interventions. Am Psychologist. 2005;60:410.

    Article  Google Scholar 

  18. Saleh ZM, Salim NE, Nikirk S, Serper M, Tapper EB. The emotional burden of caregiving for patients with cirrhosis. Hepatol Commun. 2022;6:2827–2835.

    Article  PubMed Central  PubMed  Google Scholar 

  19. Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O’Donnell M. The Zarit Burden interview: a new short version and screening version. Gerontologist. 2001;41:652–657.

    Article  PubMed  Google Scholar 

  20. Williams F, Moghaddam N, Ramsden S, De Boos D. Interventions for reducing levels of burden amongst informal carers of persons with dementia in the community: a systematic review and meta-analysis of randomised controlled trials. Aging Mental Health. 2019;23:1629–1642.

    Article  PubMed  Google Scholar 

  21. Ufere NN, Satapathy N, Philpotts L, Lai JC, Serper M. Financial burden in adults with chronic liver disease: a scoping review. Liver Transpl. 2022;28:1920–1935. https://doi.org/10.1002/lt.26514.

    Article  PubMed  Google Scholar 

  22. Lingler JH, Martire LM, Schulz R. Caregiver-specific outcomes in antidementia clinical drug trials: a systematic review and meta-analysis. J Am Geriatrics Soc. 2005;53:983–990.

    Article  Google Scholar 

  23. Tapper EB, Serper M, Goldberg D. Implementing pragmatic clinical trials in hepatology. Hepatology. 2023;10:1097.

    Google Scholar 

Download references

Funding

This study is dedicated to and funded in part by Gloria Wendling and the research fund established in her memory for Elliot Tapper. Elliot Tapper receives funding from the National Institutes of Health through the NIDDK (1K23DK117055). The funders did not conduct, design, or evaluate the results of this trial.

Author information

Authors and Affiliations

  1. Division of Gastroenterology and Hepatology, University of Michigan, Ann Arbor, MI, USA

    Elliot B. Tapper, Zachary M. Saleh, Xi Chen & Samantha Nikirk

  2. Division of Gastroenterology and Hepatology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA

    Sofia Lizza & Marina Serper

  3. 3912 Taubman, SPC 5362, 1500 E. Medical Center Dr., Ann Arbor, MI, 48109, USA

    Elliot B. Tapper

Authors
  1. Elliot B. Tapper
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Zachary M. Saleh
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Sofia Lizza
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Xi Chen
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Samantha Nikirk
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Marina Serper
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

EBT is the guarantor of this article. EBT: concept, analysis, data acquisition, and writing. SN, MS, SL, XC, and ZS: analysis, data acquisition, and critical revision of the manuscript.

Corresponding author

Correspondence to Elliot B. Tapper.

Ethics declarations

Conflict of interest

Elliot Tapper has served as a consultant to Novo Nordisk, Axcella, Norvartis, Kaleido, and Allergan, has served on advisory boards for Mallinckrodt, Rebiotix, and Bausch Health, and has received unrestricted research grants from Gilead. Marina Serper has served as a consultant to Gilead, Inc. and has received research funding from Grifols, SA. No outside interests were involved with the study. No other author has conflicts of interest to disclose.

Additional information

Publisher's Note

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

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 25 KB)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Tapper, E.B., Saleh, Z.M., Lizza, S. et al. CAREGIVER Randomized Trial of Two Mindfulness Methods to Improve the Burden and Distress of Caring for Persons with Cirrhosis. Dig Dis Sci 68, 3625–3633 (2023). https://doi.org/10.1007/s10620-023-08042-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10620-023-08042-9

Keywords

Search

Navigation