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http://dx.doi.org/10.14475/kjhpc.2016.19.3.233

Factors Affecting Research Participation of Bereaved Families of Terminal Cancer Patients: A Prospective Preliminary Study  

Kim, Ye Won (Department of Family Medicine, Gachon University Gil Medical Center)
Lee, Yuntaek (Department of Family Medicine, Gachon University Gil Medical Center)
Hwang, In Cheol (Department of Family Medicine, Gachon University Gil Medical Center)
Hwang, Sun Wook (Department of Family Medicine, Catholic University St. Paul's Hospital)
Kim, Hyo Min (Department of Family Medicine, Kyungpook National University Medical Center)
Shim, Jae Yong (Department of Family Medicine, Yonsei University College of Medicine)
Choi, Youn Seon (Department of Family Medicine, Korea University Guro Hospital)
Lee, Yong Joo (Department of Palliative Medicine, Catholic University Seoul St. Mary's Hospital)
Publication Information
Journal of Hospice and Palliative Care / v.19, no.3, 2016 , pp. 233-239 More about this Journal
Abstract
Purpose: Little is known regarding the factors associated with the willingness of family caregivers of terminal cancer patients to participate in a bereaved survey. This study aimed to ascertain the pre-loss factors that predict actual participation in a bereaved survey. Methods: We conducted a prospective observational study using data from two multi-center surveys at the end-of-life and after loss. In order to identify the pre-loss factors associated with participating in the bereaved survey, we used a step-wise multivariate logistic regression analysis. Results: Among 185 bereaved individuals, 30 responded to the survey (response rate: 16.2%). There were differences between the participation group and the non-participation group regarding religion, economic status, and perceived quality of care as assessed by the Quality Care Questionnaire-End of Life. A final multivariate model revealed that bereaved individuals who professed a religion (adjusted odds ratio [aOR]=5.01; P=0.008), had a high income (aOR=4.86, P=0.003), and satisfied with the care for familial relationship (aOR=4.49, P=0.003) were more likely to engage in the bereaved survey. Conclusion: Our finding suggests that improving the quality of end-of-life care may promote actual participation in a bereaved survey through easing post-loss distress. More attention should also be paid to those bereaved individuals who are hesitant to participate in a bereaved survey.
Keywords
Bereavement; Neoplasms; Hospice care; Family; Surveys and questionnaires;
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Times Cited By KSCI : 2  (Citation Analysis)
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1 Kang J, Shin DW, Choi JE, Sanjo M, Yoon SJ, Kim HK, et al. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psychooncology 2013;22:564-71.   DOI
2 Shimizu Y, Miyashita M, Morita T, Sato K, Tsuneto S, Shima Y. Care strategy for death rattle in terminally ill cancer patients and their family members: recommendations from a crosssectional nationwide survey of bereaved family members' perceptions. J Pain Symptom Manage 2014;48:2-12.   DOI
3 Addington-Hall JM, O’Callaghan AC. A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: results from a survey using the VOICES questionnaire. Palliat Med 2009;23:190-7.   DOI
4 Ahn E, Shin DW, Choi JY, Kang J, Kim DK, Kim H, et al. The impact of awareness of terminal illness on quality of death and care decision making: a prospective nationwide survey of bereaved family members of advanced cancer patients. Psychooncology 2013;22:2771-8.   DOI
5 Choi YS, Hwang SW, Hwang IC, Lee YJ, Kim YS, Kim HM, et al. Factors associated with quality of life among family caregivers of terminally ill cancer patients. Psychooncology 2016;25:217-24.   DOI
6 Koffman J, Donaldson N, Hotopf M, Higginson IJ. Does ethnicity matter? Bereavement outcomes in two ethnic groups living in the United Kingdom. Palliat Support Care 2005;3:183-90.
7 Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004;291:88-93.   DOI
8 Lannen PK, Wolfe J, Prigerson HG, Onelov E, Kreicbergs UC. Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later. J Clin Oncol 2008;26:5870-6.   DOI
9 Chentsova-Dutton Y, Shucter S, Hutchin S, Strause L, Burns K, Dunn L, et al. Depression and grief reactions in hospice caregivers: from pre-death to 1 year afterwards. J Affect Disord 2002;69:53-60.   DOI
10 Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. Lancet 2007;370:1960-73.   DOI
11 Song JI, Shin DW, Choi JY, Kang J, Baek YJ, Mo HN, et al. Quality of life and mental health in the bereaved family members of patients with terminal cancer. Psychooncology 2012;21:1158-66.   DOI
12 Stroebe M, Stroebe W, Schut H. Bereavement research: methodological issues and ethical concerns. Palliat Med 2003;17:235-40.   DOI
13 Seamark DA, Gilbert J, Lawrence CJ, Williams S. Are postbereavement research interviews distressing to carers? Lessons learned from palliative care research. Palliat Med 2000;14:55-6.   DOI
14 Kentish-Barnes N, McAdam JL, Kouki S, Cohen-Solal Z, Chaize M, Galon M, et al. Research participation for bereaved family members: experience and insights from a qualitative study. Crit Care Med 2015;43:1839-45.   DOI
15 Koffman J, Higginson IJ, Hall S, Riley J, McCrone P, Gomes B. Bereaved relatives’ views about participating in cancer research. Palliat Med 2012;26:379-83.   DOI
16 Dyregrov K. Bereaved parents’ experience of research participation. Soc Sci Med 2004;58:391-400.   DOI
17 Beck AM, Konnert CA. Ethical issues in the study of bereavement: the opinions of bereaved adults. Death Stud 2007;31:783-99.   DOI
18 Kross EK, Nielsen EL, Curtis JR, Engelberg RA. Survey burden for family members surveyed about end-of-life care in the intensive care unit. J Pain Symptom Manage 2012;44:671-80.   DOI
19 Eilegard A, Steineck G, Nyberg T, Kreicbergs U. Bereaved siblings' perception of participating in research--a nationwide study. Psychooncology 2013;22:411-6.
20 Hynson JL, Aroni R, Bauld C, Sawyer SM. Research with bereaved parents: a question of how not why. Palliat Med 2006;20:805-11.   DOI
21 Dumont I, Dumont S, Mongeau S. End-of-life care and the grieving process: family caregivers who have experienced the loss of a terminal-phase cancer patient. Qual Health Res 2008;18:1049-61.   DOI
22 Choi YS, Hwang SW, Hwang IC, Lee YJ, Kim YS, Kim HM, et al. Factors associated with quality of life among family caregivers of terminally ill cancer patients. Psychooncology 2016;25:217-24.   DOI
23 Burton AM, Haley WE, Small BJ, Finley MR, Dillinger-Vasille M, Schonwetter R. Predictors of well-being in bereaved former hospice caregivers: the role of caregiving stressors, appraisals, and social resources. Palliat Support Care 2008;6:149-58.
24 Garrido MM, Prigerson HG. The end-of-life experience: modifiable predictors of caregivers’ bereavement adjustment. Cancer 2014;120:918-25.   DOI
25 Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist 2005;45:634-41.   DOI
26 Oh SM, Min KJ, Park DB. A study on the standardization of the Hospital Anxiety and Depression Scale for Koreans: a comparison of normal, depressed and anxious groups. J Korean Neuropsychiatr Assoc 1999;38:289-96.
27 Singer S, Kuhnt S, Gotze H, Hauss J, Hinz A, Liebmann A, et al. Hospital anxiety and depression scale cutoff scores for cancer patients in acute care. Br J Cancer 2009;100:908-12.   DOI
28 Rhee YS, Shin DO, Lee KM, Yu HJ, Kim JW, Kim SO, et al. Korean version of the caregiver quality of life index-cancer (CQOLC-K). Qual Life Res 2005;14:899-904.   DOI
29 Baek HS, Lee KU, Joo EJ, Lee MY, Choi KS. Reliability and validity of the korean version of the connor-davidson resilience scale. Psychiatry Investig 2010;7:109-15.   DOI
30 Lim MK, Kim MH, Shin YJ, Yoo WW, Yang BM. Social support and self-rated health status in a low income neighborhood of Seoul, Korea. Korean J Prev Med 2003;36:54-62.
31 Yun BB, Kwak KW. The study of family APGAR score as the evaluaton method of the family function. Korean J Fam Med 1985;6:13-7.
32 Yun YH, Kim SH, Lee KM, Park SM, Lee CG, Choi YS, et al. Patient-reported assessment of quality care at end of life: development and validation of Quality Care Questionnaire-End of Life (QCQ-EOL). Eur J Cancer 2006;42:2310-7.   DOI
33 Steinhauser KE, Clipp EC, Hays JC, Olsen M, Arnold R, Christakis NA, et al. Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliat Med 2006;20:745-54.   DOI
34 Foster TL, Hendricks-Ferguson VL. Asking next-of-kin of recently deceased cancer patients to take part in research: 11 of 20 surveyed found it a positive experience. Evid Based Nurs 2013;16:64-5.   DOI
35 Kross EK, Engelberg RA, Shannon SE, Curtis JR. Potential for response bias in family surveys about end-of-life care in the ICU. Chest 2009;136:1496-502.   DOI
36 Fried TR, Bradley EH, O'Leary JR, Byers AL. Unmet desire for caregiver-patient communication and increased caregiver burden. J Am Geriatr Soc 2005;53:59-65.   DOI
37 Kim Y, Carver CS, Schulz R, Lucette A, Cannady RS. Finding benefit in bereavement among family cancer caregivers. J Palliat Med 2013;16:1040-7.   DOI
38 Walsh K, King M, Jones L, Tookman A, Blizard R. Spiritual beliefs may affect outcome of bereavement: prospective study. BMJ 2002;324(7353):1551.   DOI