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Preferences for and experiences of family involvement in cancer treatment decision-making: patient–caregiver dyads study

Authors

  • Dong Wook Shin,

    1. Department of Family Medicine & Health Promotion Center, Seoul National University Hospital, Seoul, Korea
    2. Cancer Survivorship Clinic, Seoul National University Cancer Hospital, Seoul, Korea
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  • Juhee Cho,

    1. Department of Health Sciences and Technology, Samsung Advanced Institute for Health Sciences and Technology, Sungkyunkwan University School of Medicine, Seoul, Korea
    2. Department of Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
    3. Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
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  • Debra L. Roter,

    1. Department of Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
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  • So Young Kim,

    1. Cancer Policy Branch, National Cancer Control Institute, National Cancer Center, Goyang, Korea
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  • Sang Kyun Sohn,

    1. Department of Hemato-oncology, Daegu-Gyeongbuk Regional Cancer Center, Kyungbuk National University Hospital, Daegu, Korea
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  • Man-Soo Yoon,

    1. Department of Obstetrics & Gynecology, Busan Regional Cancer Center, Pusan National University Hospital, Busan, Korea
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  • Young-Woo Kim,

    1. Gastric Cancer Branch, Research Institute and Hospital, National Cancer Center, Goyang, Korea
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  • BeLong Cho,

    1. Department of Family Medicine & Health Promotion Center, Seoul National University Hospital, Seoul, Korea
    2. Cancer Survivorship Clinic, Seoul National University Cancer Hospital, Seoul, Korea
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  • Jong-Hyock Park

    Corresponding author
    1. Cancer Policy Branch, National Cancer Control Institute, National Cancer Center, Goyang, Korea
    • Correspondence to: Division of Cancer Policy and Management, National Cancer Control Institute, National Cancer Center, 323 Ilsan-ro, Ilsandong-gu, Goyang-si, Gyeonggi-do 410-769, Korea. E-mail: whitemiso@ncc.re.kr

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Abstract

Background

Despite the important role that family caregivers play in providing emotional and practical support to cancer patients, relatively little is known about the family caregiver's role in treatment decision-making (TDM). We sought to investigate patients' and family caregivers' preferences for and experiences of family involvement in TDM and factors associated with preference concordance.

Method

A national survey was performed with 990 patient–caregiver dyads (participation rate:76.2%). Questions examining preferences for and experiences of family involvement in TDM were administered independently to patients and family caregivers. Concordance was calculated with weighted kappa. Logistic regression analyses were used to identify predictors of patients' and caregivers' preferences for family involvement in TDM and concordance between them.

Results

Few patients or family caregivers expressed a preference for unilateral decision-making; however, there was considerable variation and poor agreement within dyads in regard to whether the patient or family caregivers should take the lead in decision-making with input from the other (weighted kappa between respondents for TDM preferences and experiences = 0.10 and κ = 0.18, respectively). Greater TDM preference concordance was associated with higher patient education, whereas lower levels of concordance were evident for younger patients, less educated caregivers, adult child patient dyads (as opposed to a spouse–patient dyads) and problematic family communication about cancer.

Conclusions

Most patients and family caregivers valued and expected family involvement in TDM. However, there is little explicit agreement in regard to which party in the dyad should take decisional leadership and who should play a supporting role. Copyright © 2013 John Wiley & Sons, Ltd.

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