Ji Eun Lee1,2, Dong Wook Shin1,2, Juhee Cho3,4,5, Hyung Kook Yang6, So Young Kim6,7, Hyo Sang Yoo1,2, Hyun Jung Jho8, Joo Yeon Shin9, Belong Cho1,2, Keeho Park6, Jong-Hyock Park6,7. 1. Department of Family Medicine/Cancer Survivorship Clinic, Seoul National University Hospital, Seoul, Korea. 2. Laboratory of Health Promotion and Health Behavior, Biomedical Research Institute, Seoul National University Hospital, Seoul, Korea. 3. Cancer Education Center, Samsung Comprehensive Cancer Center, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Korea. 4. Departments of Health, Behavior and Society, and Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. 5. Department of Health Sciences and Technology, SAIHST, Sungkyunkwan University, Seoul, Korea. 6. Division of Cancer Policy, National Cancer Control Institute, National Cancer Center, Goyang-si, Korea. 7. College of Medicine/Graduate School of Health Science Business Convergence, Chungbuk National University, Cheongju-si, Korea. 8. Hospice and Palliative Care Branch, National Cancer Control Institute, National Cancer Center, Goyang-si, Korea. 9. Department of Counseling Psychology, Hanyang Cyber University, Seoul, Korea.
Abstract
OBJECTIVE: Recently, caregiver burden (CB) has emerged as an important issue in the area of palliative medicine. However, patients' feelings related to being a burden to their families (i.e., self-perceived burden [SPB]) is also a significant issue. We evaluated the relation of CB and SPB as preference for palliative care. METHODS: A national, multicenter, cross-sectional survey of 326 patient-caregiver dyads was performed. A set of paired questionnaires evaluating CB and SPB (five domain items assessed on a four-point Likert scale) were independently administered to patients and their caregivers. Among the respondents, only the patients with distant stage cancer and their caregivers were included. Multivariate analyses were conducted to identify the associations between CB and SPB and preference for palliative care. RESULTS: Caregivers and patients who preferred palliative care to life sustaining treatment reported higher CB and SPB scores, respectively. Caregivers who felt more of a burden were more likely to prefer palliative care over life sustaining treatment for their patients (adjusted odds ratio [aOR] = 1.67, 95% CI: 1.21-2.31). In addition, patients who perceived their caregivers' burden as large tended to prefer palliative care (aOR = 1.61, 95% CI: 1.16-2.22). CONCLUSIONS: Both CB and SPB increased preference for palliative care. This could be interpreted that high CB can lead to preference for palliative care in both patients and their caregivers, potentially threatening patient autonomy. Efforts to relieve CB and SPB are needed.
OBJECTIVE: Recently, caregiver burden (CB) has emerged as an important issue in the area of palliative medicine. However, patients' feelings related to being a burden to their families (i.e., self-perceived burden [SPB]) is also a significant issue. We evaluated the relation of CB and SPB as preference for palliative care. METHODS: A national, multicenter, cross-sectional survey of 326 patient-caregiver dyads was performed. A set of paired questionnaires evaluating CB and SPB (five domain items assessed on a four-point Likert scale) were independently administered to patients and their caregivers. Among the respondents, only the patients with distant stage cancer and their caregivers were included. Multivariate analyses were conducted to identify the associations between CB and SPB and preference for palliative care. RESULTS: Caregivers and patients who preferred palliative care to life sustaining treatment reported higher CB and SPB scores, respectively. Caregivers who felt more of a burden were more likely to prefer palliative care over life sustaining treatment for their patients (adjusted odds ratio [aOR] = 1.67, 95% CI: 1.21-2.31). In addition, patients who perceived their caregivers' burden as large tended to prefer palliative care (aOR = 1.61, 95% CI: 1.16-2.22). CONCLUSIONS: Both CB and SPB increased preference for palliative care. This could be interpreted that high CB can lead to preference for palliative care in both patients and their caregivers, potentially threatening patient autonomy. Efforts to relieve CB and SPB are needed.
Authors: J Nicholas Dionne-Odom; Jay G Hull; Michelle Y Martin; Kathleen Doyle Lyons; Anna T Prescott; Tor Tosteson; Zhongze Li; Imatullah Akyar; Dheeraj Raju; Marie A Bakitas Journal: Cancer Med Date: 2016-02-10 Impact factor: 4.452
Authors: J Nicholas Dionne-Odom; Deborah Ejem; Rachel Wells; Amber E Barnato; Richard A Taylor; Gabrielle B Rocque; Yasemin E Turkman; Matthew Kenny; Nataliya V Ivankova; Marie A Bakitas; Michelle Y Martin Journal: PLoS One Date: 2019-03-13 Impact factor: 3.240
Authors: J Nicholas Dionne-Odom; Rachel D Wells; Kate Guastaferro; Andres Azuero; Bailey A Hendricks; Erin R Currie; Avery Bechthold; Chinara Dosse; Richard Taylor; Rhiannon D Reed; Erin R Harrell; Shena Gazaway; Sally Engler; Peg McKie; Grant R Williams; Rebecca Sudore; Christine Rini; Abby R Rosenberg; Marie A Bakitas Journal: J Pain Symptom Manage Date: 2021-07-31 Impact factor: 3.612