Quality of Life Research

, Volume 27, Issue 6, pp 1571–1581 | Cite as

The impact of caregiver’s role preference on decisional conflicts and psychiatric distresses in decision making to help caregiver’s disclosure of terminal disease status

  • Shin Hye Yoo
  • Young Ho YunEmail author
  • Kyoung-Nam Kim
  • Jung Lim Lee
  • Jeanno Park
  • Youn Seon Choi
  • Yeun Keun Lim
  • Samyong Kim
  • Hyun Sik Jeong
  • Jung Hun Kang
  • Ho-Suk Oh
  • Ji Chan Park
  • Si-Young Kim
  • Hong Suk Song
  • Keun Seok Lee
  • Dae Seog Heo
  • Young Seon Hong



The objective of this study was to investigate the impact of caregivers’ role preference in decision making on conflicts and psychiatric distresses.


The responses of 406 caregivers of terminal cancer patients enrolled in a trial determining the efficacy of a decision aid focused on the disclosure of terminal disease status were included in this secondary analysis. The outcomes include the change scores of the Decision Conflict Scale (DCS) and depression and anxiety subscales of the Hospital Anxiety and Depression Scale (HADS) at the 1 and 3 months from baseline. The linear mixed model was employed to discover the impact of caregivers’ decisional role preference on the outcomes.


Of the 406, 137 (33.7%) showed an active role preference and 269 (66.3%) showed a passive role preference. In the post hoc analysis of the adjusted differences of change scores between passive caregivers who received decision aid (passive-decision aid) and active caregivers with decision aid (active-decision aid), non-significant differences were observed in the DCS. However, at the 3-month, the change scores of the HADS depression subscale increased by 4.43 (effect size, 0.71) and those of the HADS anxiety subscale increased by 4.14 (effect size, 0.61) in the passive-decision aid group than in active-decision aid group, showing moderate to large difference.


These findings suggest that information might be ethically recommended in a format that is interactive and tailored to how much an individual wishes to be involved in the decision-making process.


Decision making Decision aid Caregiver Decisional role preference Cancer End of life 



Financial support for this study was provided in part by a grant from National Cancer Center (Grant Number: 0710420-1) and a grant of the Korea Health Technology R&D Project through the Korea Health Industry Development Institute (KHIDI), funded by the Ministry of Health & Welfare, Republic of Korea (Grant Number: HC13C1391). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.

Compliance with Ethical Standards

Ethical approval

All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The institutional review boards of the 13 hospitals and the National Cancer Center approved the protocol (reference: nccncs-08-142). Informed consent was obtained from all individual participants included in the study. This article does not contain any studies with animals performed by any of the authors.

Conflict of interest

The author(s) indicated no potential conflicts of interest.

Supplementary material

11136_2018_1814_MOESM1_ESM.docx (27 kb)
Supplementary material 1 (DOCX 26 KB)


  1. 1.
    O’Connor, A. M., Legare, F., & Stacey, D. (2003). Risk communication in practice: The contribution of decision aids. BMJ, 327(7417), 736–740. Scholar
  2. 2.
    Stiggelbout, A. M., Pieterse, A. H., & De Haes, J. C. (2015). Shared decision making: Concepts, evidence, and practice. Patient Education and Counseling, 98(10), 1172–1179. Scholar
  3. 3.
    Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44(5), 681–692.CrossRefGoogle Scholar
  4. 4.
    Drug and Therapeutics Bulletin. (2013). An introduction to patient decision aids. BMJ, 347, 347. Scholar
  5. 5.
    Whelan, T., Levine, M., Willan, A., Gafni, A., Sanders, K., Mirsky, D., Chambers, S., O’Brien, M. A., Reid, S., & Dubois, S. (2004). Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: A randomized trial. JAMA, 292(4), 435–441. Scholar
  6. 6.
    Whelan, T., Sawka, C., Levine, M., Gafni, A., Reyno, L., Willan, A., Julian, J., Dent, S., Abu-Zahra, H., Chouinard, E., Tozer, R., Pritchard, K., & Bodendorfer, I. (2003). Helping patients make informed choices: A randomized trial of a decision aid for adjuvant chemotherapy in lymph node-negative breast cancer. The Journal of the National Cancer Institute, 95(8), 581–587.CrossRefPubMedGoogle Scholar
  7. 7.
    Weymiller, A. J., Montori, V. M., Jones, L. A., Gafni, A., Guyatt, G. H., Bryant, S. C., Christianson, T. J., Mullan, R. J., & Smith, S. A. (2007). Helping patients with type 2 diabetes mellitus make treatment decisions: statin choice randomized trial. Archives of Internal Medicine, 167(10), 1076–1082. Scholar
  8. 8.
    O’Connor, A. M., Tugwell, P., Wells, G. A., Elmslie, T., Jolly, E., Hollingworth, G., McPherson, R., Bunn, H., Graham, I., & Drake, E. (1998). A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Education and Counseling, 33(3), 267–279.CrossRefPubMedGoogle Scholar
  9. 9.
    Lam, W. W., Chan, M., Or, A., Kwong, A., Suen, D., & Fielding, R. (2013). Reducing treatment decision conflict difficulties in breast cancer surgery: A randomized controlled trial. Journal of Clinical Oncology, 31(23), 2879–2885. Scholar
  10. 10.
    Wilson, K. G., Aaron, S. D., Vandemheen, K. L., Hebert, P. C., McKim, D. A., Fiset, V., Graham, I. D., Sevigny, E., & O’Connor, A. M. (2005). Evaluation of a decision aid for making choices about intubation and mechanical ventilation in chronic obstructive pulmonary disease. Patient Education and Counseling, 57(1), 88–95. Scholar
  11. 11.
    Yun, Y. H., Lee, M. K., Park, S., Lee, J. L., Park, J., Choi, Y. S., Lim, Y. K., Kim, S. Y., Jeong, H. S., Kang, J. H., Oh, H. S., Park, J. C., Kim, S. Y., Song, H. S., Ro, J., Lee, K. S., Heo, D. S., & Hong, Y. S. (2011). Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: A randomized controlled trial. Journal of Clinical Oncology, 29(36), 4811–4819. Scholar
  12. 12.
    El-Jawahri, A., Podgurski, L. M., Eichler, A. F., Plotkin, S. R., Temel, J. S., Mitchell, S. L., Chang, Y., Barry, M. J., & Volandes, A. E. (2010). Use of video to facilitate end-of-life discussions with patients with cancer: A randomized controlled trial. Journal of Clinical Oncology, 28(2), 305–310. Scholar
  13. 13.
    Molenaar, S., Sprangers, M. A., Rutgers, E. J., Luiten, E. J., Mulder, J., Bossuyt, P. M., van Everdingen, J. J., Oosterveld, P., & de Haes, H. C. (2001). Decision support for patients with early-stage breast cancer: Effects of an interactive breast cancer CDROM on treatment decision, satisfaction, and quality of life. Journal of Clinical Oncology, 19(6), 1676–1687. Scholar
  14. 14.
    Butow, P. N., Maclean, M., Dunn, S. M., Tattersall, M. H., & Boyer, M. J. (1997). The dynamics of change: Cancer patients’ preferences for information, involvement and support. Annals of Oncology, 8(9), 857–863.CrossRefPubMedGoogle Scholar
  15. 15.
    Silveira, M. J., Kim, S. Y., & Langa, K. M. (2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362(13), 1211–1218. Scholar
  16. 16.
    van der Heide, A., Deliens, L., Faisst, K., Nilstun, T., Norup, M., Paci, E., van der Wal, G., van der Maas, P. J., & EURELD Consortium. (2003). End-of-life decision-making in six European countries: Descriptive study. Lancet, 362(9381), 345–350. Scholar
  17. 17.
    Shin, D. W., Cho, J., Roter, D. L., Kim, S. Y., Sohn, S. K., Yoon, M. S., Kim, Y. W., Cho, B., & Park, J. H. (2013). Preferences for and experiences of family involvement in cancer treatment decision-making: Patient-caregiver dyads study. Psychooncology, 22(11), 2624–2631. Scholar
  18. 18.
    Shin, D. W., Cho, J., Roter, D. L., Kim, S. Y., Yang, H. K., Park, K., Kim, H. J., Shin, H. Y., Kwon, T. G., & Park, J. H. (2016). Attitudes toward family involvement in cancer treatment decision making: The perspectives of patients, family caregivers, and their oncologists. Psychooncology. Scholar
  19. 19.
    Lee, J. K., Keam, B., An, A. R., Kim, T. M., Lee, S. H., Kim, D. W., & Heo, D. S. (2013). Surrogate decision-making in Korean patients with advanced cancer: A longitudinal study. Support Care Cancer, 21(1), 183–190. Scholar
  20. 20.
    Elwyn, G., O’Connor, A., Stacey, D., Volk, R., Edwards, A., Coulter, A., Thomson, R., Barratt, A., Barry, M., Bernstein, S., Butow, P., Clarke, A., Entwistle, V., Feldman-Stewart, D., Holmes-Rovner, M., Llewellyn-Thomas, H., Moumjid, N., Mulley, A., Ruland, C., Sepucha, K., Sykes, A., Whelan, T., & International Patient Decision Aids Standards Collaboration. (2006) Developing a quality criteria framework for patient decision aids: Online international Delphi consensus process. BMJ, 333 (7565):417. Scholar
  21. 21.
    O’Connor, A. M. (1995). Validation of a decisional conflict scale. Medical Decision Making: An International Journal of the Society for Medical Decision Making, 15(1), 25–30.CrossRefGoogle Scholar
  22. 22.
    Song, M. K., & Sereika, S. M. (2006). An evaluation of the Decisional Conflict Scale for measuring the quality of end-of-life decision making. Patient Education and Counseling, 61(3), 397–404. Scholar
  23. 23.
    Bjelland, I., Dahl, A. A., Haug, T. T., & Neckelmann, D. (2002). The validity of the Hospital Anxiety and Depression Scale. An updated literature review. The Journal of Psychosomatic Research, 52(2), 69–77.CrossRefPubMedGoogle Scholar
  24. 24.
    Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370.CrossRefPubMedGoogle Scholar
  25. 25.
    Oh, S. M. M. K., & Park, D. B. (1999). A study on the standardization of the hospital anxiety and depression scale for Koreans: A comparison of normal, depressed and anxious groups. Journal of Korean Neuropsychiatric Association, 38, 289–296.Google Scholar
  26. 26.
    Degner, L. F., Sloan, J. A., & Venkatesh, P. (1997). The Control Preferences Scale. Canadian Journal of Nursing Research, 29(3), 21–43.PubMedGoogle Scholar
  27. 27.
    Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum.Google Scholar
  28. 28.
    Hack, T. F., & Degner, L. F. (2004). Coping responses following breast cancer diagnosis predict psychological adjustment three years later. Psychooncology, 13(4), 235–247. Scholar
  29. 29.
    Anderson, W. G., Arnold, R. M., Angus, D. C., & Bryce, C. L. (2009). Passive decision-making preference is associated with anxiety and depression in relatives of patients in the intensive care unit. The Journal of Critical Care, 24(2), 249–254. Scholar
  30. 30.
    Prochaska, J. O., & DiClemente, C. C. (1983). Stages and processes of self-change of smoking: Toward an integrative model of change. The Journal of Consulting and Clinical Psychology, 51(3), 390–395.CrossRefPubMedGoogle Scholar
  31. 31.
    Cuypers, M., Lamers, R. E., de Vries, M., Husson, O., Kil, P. J., & van de Poll-Franse, L. V. (2016). Prostate cancer survivors with a passive role preference in treatment decision-making are less satisfied with information received: Results from the PROFILES registry. Urologic Oncology, 34(11), 482.e11–482.e18. Scholar
  32. 32.
    Lee, S. Y., Hwang, H., Hawkins, R., & Pingree, S. (2008). Interplay of negative emotion and health self-efficacy on the use of health information and its outcomes. Communication Research, 35(3), 358–381.CrossRefGoogle Scholar
  33. 33.
    Barbo, A. S.-A. M., & Lopez-Olivo, M. A. (2016) Impact of decision-making role preferences in the efficacy of a multimedia patient education tool for patients with common rheumatologic conditions. Arthritis & Rheumatology, 68(Suppl 10), Abstract 1144.Google Scholar
  34. 34.
    Yennurajalingam, S., Noguera, A., Parsons, H. A., Torres-Vigil, I., Duarte, E. R., Palma, A., Bunge, S., Palmer, J. L., Delgado-Guay, M. O., & Bruera, E. (2013). A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America. Palliative Medicine, 27(7), 692–698. Scholar
  35. 35.
    Connor, O., Stacey, D., & Jacobsen, M. J. (2015) Ottawa Personal Decision Guide. Ottawa Hospital Research Institute & University of Ottawa.
  36. 36.
    Stacey, D., Murray, M. A., Legare, F., Sandy, D., Menard, P., & O’Connor, A. (2008). Decision coaching to support shared decision making: A framework, evidence, and implications for nursing practice, education, and policy. Worldviews on Evidence-Based Nursing, 5(1), 25–35. Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Shin Hye Yoo
    • 1
  • Young Ho Yun
    • 2
    Email author
  • Kyoung-Nam Kim
    • 3
  • Jung Lim Lee
    • 4
  • Jeanno Park
    • 5
  • Youn Seon Choi
    • 6
  • Yeun Keun Lim
    • 7
  • Samyong Kim
    • 8
  • Hyun Sik Jeong
    • 9
  • Jung Hun Kang
    • 10
  • Ho-Suk Oh
    • 11
  • Ji Chan Park
    • 12
  • Si-Young Kim
    • 13
  • Hong Suk Song
    • 14
  • Keun Seok Lee
    • 15
  • Dae Seog Heo
    • 1
  • Young Seon Hong
    • 16
  1. 1.Department of Internal MedicineSeoul National University College of MedicineSeoulRepublic of Korea
  2. 2.Department of Biomedical ScienceSeoul National University College of MedicineSeoulRepublic of Korea
  3. 3.Institute of Public Health and Medical ServiceSeoul National University HospitalSeoulRepublic of Korea
  4. 4.Department of Hemato-OncologyDaegu Fatima HospitalDaeguRepublic of Korea
  5. 5.Palliative Care and Hospice CenterBobath Memorial HospitalSeongnamRepublic of Korea
  6. 6.Department of Family MedicineKorea University Guro HospitalSeoulRepublic of Korea
  7. 7.Department of Internal MedicineKwangju Christian HospitalKwangjuRepublic of Korea
  8. 8.Division of Hemato-Oncology, Department of Internal Medicine, College of MedicineChungnam National UniversityDaejeonRepublic of Korea
  9. 9.Department of Hematology and OncologyGSAM HospitalGunpoRepublic of Korea
  10. 10.Department of Internal Medicine, Postgraduate Medical SchoolGyeongsang National UniversityJinjuRepublic of Korea
  11. 11.Department of Internal Medicine, Gangneung Asan HospitalUniversity of Ulsan College of MedicineGangneungRepublic of Korea
  12. 12.Division of Hemato-Oncology, Department of Internal Medicine, Daejeon St Mary’s HospitalThe Catholic University of KoreaDaejeonRepublic of Korea
  13. 13.Departments of Medical Oncology and HematologyKyung Hee University HospitalSeoulRepublic of Korea
  14. 14.Department of Internal MedicineKeimyung University Dongsan Medical CenterDaeguRepublic of Korea
  15. 15.Center for Breast Cancer, Research Institute and HospitalNational Cancer CenterGoyangRepublic of Korea
  16. 16.Department of Internal Medicine, Seoul St Mary’s HospitalThe Catholic University of KoreaSeoulRepublic of Korea

Personalised recommendations