Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care

被引:0
|
作者
Gundry, Alyson [1 ,4 ]
Elvidge, Norah [2 ]
Donovan, Leigh [1 ]
Bunker, Kristy
Herbert, Anthony [1 ,3 ]
Bradford, Natalie [2 ,3 ]
机构
[1] Childrens Hlth Queensland Hosp & Hlth Serv, Paediat Palliat Care Serv, Oncol Serv Grp, South Brisbane, Australia
[2] Queensland Univ Technol, Sch Nursing, Kelvin Grove, Australia
[3] Queensland Univ Technol, Canc & Palliat Care Outcomes Ctr, Ctr Childrens Hlth Res, South Brisbane, Australia
[4] Queensland Childrens Hosp, Bereavement Support Program, South Brisbane 4101, Australia
基金
澳大利亚国家健康与医学研究理事会;
关键词
Child; palliative care; parents; bereavement; grief; surveys and questionnaires; FOLLOW-UP; CHILDS DEATH; CANCER; FAMILIES; SERVICES;
D O I
10.1016/j.jpainsymman.2023.02.002
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. Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives. To evaluate a Bereavement Support Program from the perspectives of both families and service providers. Methods. A cross-sectional study design explored the experiences and perspectives of the benefits of various program compo-nents. Respondents were asked about accessing program components, their expectations, and parents were asked to rate the impact of program components on their grief on a scale from one, (no impact) to 100 (positive impact). Space for free text was provided throughout for additional feedback. Setting/ participants. The survey was distributed through mailing lists of parents known to the service, referring service pro-viders, and advertised in the program newsletter. Results. One hundred two respondents completed the survey and provided detailed comments about their experiences. Most interactions and program components were reported helpful by both parents and service providers. Parents (N = 60) reported a positive impact on grief across all program components (median impact on grief range 81-98, Interquartile range 68.5-99). There were, however, a considerable number of respondents who were unaware of some components. Conclusion. Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer signifi- cant and beneficial resources for families. Findings have supported service development in a major tertiary paediatric hospital facilitating improved access for families, particularly for those in regional and rural locations. J Pain Symptom Manage 2023;65:388-399. (c) 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
引用
收藏
页码:388 / 399.e9
页数:21
相关论文
共 50 条
  • [1] Surviving with Trisomy 13: Provider and Parent Perspectives and the Role of the Pediatric Palliative Care Program
    Chung, Duc
    Haynes, Kristina
    Haynes, Russell
    [J]. AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2017, 173 (03) : 813 - 815
  • [2] First Hospital-Based Pain and Palliative Care Program in Hawaii
    Kuriya, Meiko
    Bell, Christina
    Fischberg, Daniel
    [J]. JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2010, 39 (02) : 387 - 387
  • [3] Electronically Triggered Hospital-Based Palliative Care: Patient and Clinician Perspectives
    Courtright, Kate
    Szymanski, Stephanie
    Hyder, Sydney
    Weissman, Gary
    Eriksen, Whitney
    Bocage, Claire
    Shah, Arnav
    Draugelis, Michael
    Regli, Susan
    O'Connor, Nina
    Halpern, Scott
    [J]. JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2020, 60 (01) : 233 - 234
  • [4] HOSPITAL-BASED HOME CARE PROGRAM FOR CHILDREN WITH CANCER: DEVELOPING PALLIATIVE CARE AT HOME
    Hansson, H.
    Schmiegelow, K.
    Hallstrom, I.
    [J]. PEDIATRIC BLOOD & CANCER, 2014, 61 : S215 - S215
  • [5] Provider perspectives on palliative care needs at a major teaching hospital
    Llamas, KJ
    Llamas, M
    Pickhaver, AM
    Piller, NB
    [J]. PALLIATIVE MEDICINE, 2001, 15 (06) : 461 - 470
  • [6] Estimating the cost-savings of a comprehensive hospital-based palliative care program
    Isenberg, Sarina
    Lu, Chunhua
    McQuade, John P.
    Smith, Thomas J.
    Razzak, A. Rab
    [J]. JOURNAL OF CLINICAL ONCOLOGY, 2016, 34 (07)
  • [7] Evaluation of a grandparent bereavement support group in a Pediatric Palliative Care Hospice
    Arnone, Madelena
    Dumond, Lynn Grandmaison
    Yazdani, Nahal
    El-Baroudi, Rayan
    Pouliot, Annie
    Modanloo, Shokoufeh
    [J]. PROGRESS IN PALLIATIVE CARE, 2022, 30 (02) : 75 - 82
  • [8] PALLIATIVE CARE BEREAVEMENT INTERVENTION: AN EDUCATIONAL AND SUPPORT PROGRAM FOR NEUROONCOLOGY STAFF
    Mark, Melissa
    Gilger, Elizabeth
    Thompson, Aimee
    Fouladi, Maryam
    [J]. NEURO-ONCOLOGY, 2018, 20 : 180 - 180
  • [9] Evaluating the cost-effectiveness of the hospital-based palliative care program at The Johns Hopkins Hospital
    Isenberg, Sarina
    Holtgrave, David R.
    Lu, Chunhua
    McQuade, John P.
    Weir, Brian
    Gill, Natasha
    Razzak, A. Rab
    Smith, Thomas J.
    [J]. JOURNAL OF CLINICAL ONCOLOGY, 2016, 34 (07)
  • [10] Nonclinical outcomes of hospital-based palliative care
    White, Kenneth R.
    Stover, Kristie G.
    Cassel, J. Brian
    Smith, Thomas J.
    [J]. JOURNAL OF HEALTHCARE MANAGEMENT, 2006, 51 (04) : 260 - 273