Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Psychosocial Support Around Death, Dying, and Grief for Children with Intellectual Disabilities in Pediatric Palliative Care: An Empirical Study
Jönköping University, School of Education and Communication, HLK, CHILD.
2023 (English)Independent thesis Advanced level (degree of Master (Two Years)), 10 credits / 15 HE creditsStudent thesisAlternative title
Psychosocial Support Around Death, Dying, and Grief for Children with Intellectual Disabilities in Pediatric Palliative Care : An Empirical Study (English)
Abstract [en]

Many children with life-limiting health conditions in pediatric palliative care have cognitive impairments or intellectual disabilities (ID). They are confronted with their own death and need adapted psychosocial support. The assumption that children with ID might not understand death and dying can lead to limited support. Little is known about psychosocial support in pediatric palliative care around death, dying, and grief for this population. The study aimed to capture professionals' experiences in supporting children with ID in pediatric palliative care around topics of death, dying, and grief. Seven professionals who worked in pediatric palliative care in Germany were interviewed utilizing a qualitative research approach with semi-structured interviews. Inductive thematic analysis was used, and three major themes were identified: Communication about death and dying involves both verbal and non-verbal means, Child-centered interventions are employed to enhance the child's well-being, and Personal factors of involved individuals influence the support provision. The provided support was highly individualized to children's needs. Communication difficulties were identified as a challenge for professionals when providing psychosocial support for children with ID. Children's health condition and functioning, parents' beliefs, and professionals' attitudes towards ID and uncertainty about children's needs were identified as crucial factors influencing support provision for children with ID. The need for further research was highlighted.

Place, publisher, year, edition, pages
2023. , p. 35
Keywords [en]
pediatric palliative care, psychosocial support, children with intellectual disabilities, death
National Category
Pediatrics Health Sciences Psychology Nursing
Identifiers
URN: urn:nbn:se:hj:diva-61272ISRN: JU-HLK-SBU-2-20230153OAI: oai:DiVA.org:hj-61272DiVA, id: diva2:1770131
Subject / course
HLK, Child Studies
Presentation
2023-06-01, Ha208, Gjuterigatan 5, Jönköping, 13:00 (English)
Supervisors
Examiners
Available from: 2023-06-19 Created: 2023-06-19 Last updated: 2024-04-19Bibliographically approved

Open Access in DiVA

No full text in DiVA

By organisation
HLK, CHILD
PediatricsHealth SciencesPsychologyNursing

Search outside of DiVA

GoogleGoogle Scholar

urn-nbn

Altmetric score

urn-nbn
Total: 528 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf