Parental perspectives on the grief and support needs of children and young people bereaved during the COVID-19 pandemic: qualitative findings from a national survey

  1. Emily Harrop
  2. Silvia Goss
  3. Mirella Longo
  4. Kathy Seddon
  5. Anna Torrens-Burton
  6. Eileen Sutton
  7. Damian JJ Farnell
  8. Alison Penny
  9. Annmarie Nelson
  10. Anthony Byrne
  11. Lucy E. Selman

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Abstract

Background

During the COVID-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians.

Methods

We analysed cross-sectional qualitative free-text data from a survey of adults bereaved in the UK during the pandemic. Participants were recruited via media, social media, national associations and community/charitable organisations. Thematic analysis was conducted on free text data collected from parent/guardian participants in response to a survey question on the bereavement experiences and support needs of their children.

Results

Free-text data from 104 parent/guardian participants was included. Three main themes were identified: the pandemic-related challenges and struggles experienced by children and young people; family support and coping; and support from schools and services. Pandemic-challenges include the impacts of being separated from the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective family coping and communication, but also of difficulties relating to parental grief and children’s existing mental health problems. Schools and bereavement organisations’ provision of specialist support was valued, but there was evidence of unmet need, with some participants reporting a lack of access to specialist grief or mental health support.

Conclusion

Children and young people have faced additional strains and challenges associated with pandemic bereavement. We recommend resources and initiatives that facilitate supportive communication within family and school settings, adequate resourcing of school and community-based specialist bereavement/mental health services, and increased information and signposting to the support that is available.

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  1. Version published to 10.1186/s12904-022-01066-4
  2. ScreenIT

    SciScore for 10.1101/2021.12.06.21267238: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    EthicsConsent: The initial section of the survey requested informed consent and details data protection.
    Sex as a biological variablenot detected.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.

    Table 2: Resources

    Software and Algorithms
    SentencesResources
    Data analysis: Free-text survey responses were analysed using inductive thematic analysis, involving line-by-line coding in Excel and identification of descriptive and analytical themes (32).
    Excel
    suggested: None

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

    Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
    Strengths, weaknesses and implications for research: This free-text data collected from parent/caregiver participants in a large national study of people’s experiences of bereavement during the Covid-19 pandemic in the UK provides important insights into the difficulties, support needs and experiences of bereaved children and young people, from the perspective of their parents/caregivers. Limitations include the fact that we did not hear from children and young people directly, and that this data was collected from a single question which formed part of a broader questionnaire and study focused on adult experiences and needs. Lack of random sampling also means that the survey is not statistically representative of the whole bereaved population, and despite significant efforts and targeted recruitment, people from minority ethnic backgrounds and men are underrepresented in the data set overall and in responses to this question. Most bereavements were of grandparents, with small group sizes for other types of bereavements including those likely to have greater impact, such as death of a parent or sibling, hence needs for support may be greater than reported here. Future research is needed which focuses specifically on the experiences of children and young people, in particular from those population groups worst affected by Covid-19 in the UK, including Black and minority ethnic communities and those living in areas of high socio-economic deprivation. Research exploring school a...

    Results from TrialIdentifier: No clinical trial numbers were referenced.

    Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

    Results from JetFighter: We did not find any issues relating to colormaps.

    Results from rtransparent:
    • Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
    • No protocol registration statement was detected.

    Results from scite Reference Check: We found no unreliable references.

    About SciScore

    SciScore is an automated tool that is designed to assist expert reviewers by finding and presenting formulaic information scattered throughout a paper in a standard, easy to digest format. SciScore checks for the presence and correctness of RRIDs (research resource identifiers), and for rigor criteria such as sex and investigator blinding. For details on the theoretical underpinning of rigor criteria and the tools shown here, including references cited, please follow this link.

  3. Version published to 10.1101/2021.12.06.21267238v1 on medRxiv