Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care. 2023

Alyson Gundry, and Norah Elvidge, and Leigh Donovan, and Kristy Bunker, and Anthony Herbert, and Natalie Bradford
Paediatric Palliative Care Service, Oncology Services Group (A.G., L.D., A.H.), Children's Health Queensland Hospital and Health Service, South Brisbane, Australia; School of Nursing (N.E., N.B.), Queensland University of Technology, Kelvin Grove, Australia; Cancer and Palliative Care Outcomes Centre at Centre for Children's Health Research (A.H., N.B.), Queensland University of Technology, South Brisbane, Australia. Electronic address: Alyson.gundry@health.qld.gov.au.

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. To evaluate a Bereavement Support Program from the perspectives of both families and service providers. A cross-sectional study design explored the experiences and perspectives of the benefits of various program components. 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. The survey was distributed through mailing lists of parents known to the service, referring service providers, and advertised in the program newsletter. 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. Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer significant 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.

UI MeSH Term Description Entries
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D010290 Parents Persons functioning as natural, adoptive, or substitute parents. The heading includes the concept of parenthood as well as preparation for becoming a parent. Step-Parents,Parental Age,Parenthood Status,Stepparent,Age, Parental,Ages, Parental,Parent,Parental Ages,Status, Parenthood,Step Parents,Step-Parent,Stepparents
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D003430 Cross-Sectional Studies Studies in which the presence or absence of disease or other health-related variables are determined in each member of the study population or in a representative sample at one particular time. This contrasts with LONGITUDINAL STUDIES which are followed over a period of time. Disease Frequency Surveys,Prevalence Studies,Analysis, Cross-Sectional,Cross Sectional Analysis,Cross-Sectional Survey,Surveys, Disease Frequency,Analyses, Cross Sectional,Analyses, Cross-Sectional,Analysis, Cross Sectional,Cross Sectional Analyses,Cross Sectional Studies,Cross Sectional Survey,Cross-Sectional Analyses,Cross-Sectional Analysis,Cross-Sectional Study,Cross-Sectional Surveys,Disease Frequency Survey,Prevalence Study,Studies, Cross-Sectional,Studies, Prevalence,Study, Cross-Sectional,Study, Prevalence,Survey, Cross-Sectional,Survey, Disease Frequency,Surveys, Cross-Sectional
D006117 Grief Normal, appropriate sorrowful response to an immediate cause. It is self-limiting and gradually subsides within a reasonable time. Mourning,Griefs,Mournings
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D001601 Bereavement Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. Bereavements
D012944 Social Support Support systems that provide assistance and encouragement to individuals with physical or emotional disabilities in order that they may better cope. Informal social support is usually provided by friends, relatives, or peers, while formal assistance such as COMMUNITY SUPPORT is provided by churches, groups, etc. Perceived Social Support,Social Care,Online Social Support,Care, Social,Online Social Supports,Perceived Social Supports,Social Support, Online,Social Support, Perceived,Social Supports, Online,Social Supports, Perceived,Support, Online Social,Support, Perceived Social,Support, Social,Supports, Perceived Social
D062606 Tertiary Care Centers A medical facility which provides a high degree of subspecialty expertise for patients from centers where they received SECONDARY CARE. Tertiary Hospital,Tertiary Referral Center,Tertiary Referral Hospital,Care Center, Tertiary,Care Centers, Tertiary,Center, Tertiary Care,Center, Tertiary Referral,Centers, Tertiary Care,Centers, Tertiary Referral,Hospital, Tertiary,Hospital, Tertiary Referral,Hospitals, Tertiary,Hospitals, Tertiary Referral,Referral Center, Tertiary,Referral Centers, Tertiary,Referral Hospital, Tertiary,Referral Hospitals, Tertiary,Tertiary Care Center,Tertiary Hospitals,Tertiary Referral Centers,Tertiary Referral Hospitals

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