?It?s Hard Not to Have Regrets:? Qualitative Analysis of Decisional Regret in Bereaved Parents

被引:7
作者
Feifer, Deborah [1 ]
Broden, Elizabeth G. [1 ]
Baker, Justin N. [2 ]
Wolfe, Joanne [1 ,3 ]
Snaman, Jennifer [1 ,3 ]
机构
[1] Dana Farber Canc Inst, Dept Psychosocial Oncol & Palliat Care, 450 Brookline Ave, Boston, MA 02215 USA
[2] St Jude Childrens Res Hosp, Dept Oncol, Div Qual Life & Palliat Care, Memphis, TN USA
[3] Boston Childrens Hosp, Dept Pediat, Boston, MA USA
关键词
Child; parent; bereavement; pediatric cancer; decisional regret; CANCER-PATIENTS; CHILDREN; LIFE; END; SYMPTOMS; DEATH;
D O I
10.1016/j.jpainsymman.2022.12.144
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Context. Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives. We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement.Methods. We analyzed responses from a cross-sectional, dual site study of parents six to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elab-orated with free text. We used content analysis to identify recurrent categories in parents' responses.Results. A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to five categories: treatments, including those pursued and/or not pursued (n = 57), decision-making processes (n = 35), relationships with their child and care team (n = 26), child suffering (n = 10), and end-of-life characteristics (n = 6). The relative frequency of categories was similar in parents with and without deci-sional regret, but self-blame was more common in responses from parents with decisional regret.Conclusion. Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research. J Pain Symptom Manage 2023;65:e399-e407. (c) 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
引用
收藏
页码:E399 / E407
页数:9
相关论文
共 32 条
  • [1] "Seed Planting" As an Approach for Longitudinal Prognostic Disclosure in Pediatric Cancer: A Case Series
    Aglio, Taylor
    Woods, Cameka
    Baker, Justin N. N.
    Mack, Jennifer W. W.
    Kaye, Erica C. C.
    [J]. JOURNAL OF PALLIATIVE MEDICINE, 2023, 26 (03) : 447 - 451
  • [2] The impact of the caregiver-oncologist relationship on caregiver experiences of end-of-life care and bereavement outcomes
    An, Amy W.
    Ladwig, Susan
    Epstein, Ronald M.
    Prigerson, Holly G.
    Duberstein, Paul R.
    [J]. SUPPORTIVE CARE IN CANCER, 2020, 28 (09) : 4219 - 4225
  • [3] [Anonymous], 2022, MAXQDA
  • [4] Validation of a decision regret scale
    Brehaut, JC
    O'Connor, AM
    Wood, TJ
    Hack, TF
    Siminoff, L
    Gordon, E
    Feldman-Stewart, D
    [J]. MEDICAL DECISION MAKING, 2003, 23 (04) : 281 - 292
  • [5] Regret in decision making
    Connolly, T
    Zeelenberg, M
    [J]. CURRENT DIRECTIONS IN PSYCHOLOGICAL SCIENCE, 2002, 11 (06) : 212 - 216
  • [6] Bereavement support for families following the death of a child from cancer: Experience of bereaved parents
    deCinque, Natarlie
    Monterosso, Leanne
    Dadd, Gaye
    Sidhu, Ranita
    Macpherson, Rosemary
    Aoun, Samar
    [J]. JOURNAL OF PSYCHOSOCIAL ONCOLOGY, 2006, 24 (02) : 65 - 83
  • [7] Eisma MC, 2021, BEHAV THER, V52, P577, DOI 10.1016/j.beth.2020.07.007
  • [8] Helton G, 2021, J PAIN SYMPTOM MANAG, V61, P702
  • [9] Changes Over Time in Good-Parent Beliefs Among Parents of Children With Serious Illness: A Two-Year Cohort Study
    Hill, Douglas L.
    Faerber, Jennifer A.
    Li, Yimei
    Miller, Victoria A.
    Carroll, Karen W.
    Morrison, Wynne
    Hinds, Pamela S.
    Feudtner, Chris
    [J]. JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2019, 58 (02) : 190 - 197
  • [10] Bereavement-Related Regret Trajectories Among Widowed Older Adults
    Holland, Jason M.
    Thompson, Kara L.
    Rozalski, Vincent
    Lichtenthal, Wendy G.
    [J]. JOURNALS OF GERONTOLOGY SERIES B-PSYCHOLOGICAL SCIENCES AND SOCIAL SCIENCES, 2014, 69 (01): : 40 - 47