Evidence map›Paper›PMID 27881828›Full record

ArticlePalliative medicine2017

"Hope for the best, prepare for the worst": A qualitative interview study on parents' needs and fears in pediatric advance care planning.

Julia Desiree Lotz, Marion Daxer, Ralf J Jox, Gian Domenico Borasio, Monika Führer

Abstract read
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In one paragraph

Article in Palliative medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 50 papers, 6 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
50citing papers in PubMed, 6 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

50 citing papers in PubMed, 6 syntheses or guidelines pooled it.

  1. Pooled it
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  6. Pooled it
  7. Trial
  8. Trial
  9. Hope in Pediatric Palliative Care: A Systematic Review.Children (Basel, Switzerland) · 2026
    Review
  10. Article
  11. Article
  12. Article
  13. "The American journal of hospice & palliative care · 2025
    Article
  14. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Julia Desiree Lotz1 Center for Pediatric Palliative Care, University Children's Hospital, Ludwig-Maximilians University of Munich, Munich, Germany.
Marion Daxer1 Center for Pediatric Palliative Care, University Children's Hospital, Ludwig-Maximilians University of Munich, Munich, Germany.
Ralf J Jox2 Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians University of Munich, Munich, Germany.
Gian Domenico Borasio4 Palliative Care Service, Centre Hospitalier Universitaire Vaudois, University of Lausanne, Lausanne, Switzerland.
Monika Führer1 Center for Pediatric Palliative Care, University Children's Hospital, Ludwig-Maximilians University of Munich, Munich, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning.

aimWe aimed to investigate parents' views and needs regarding pediatric advance care planning.

designWe performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña. SETTING/

participantsWe conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender.

resultsParents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning.

conclusionDespite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.

Indexed as

Advance Care PlanningAdvance DirectivesChild MortalityFearNeeds AssessmentTerminal CareAdolescentAdultChildChild, PreschoolFemaleHumansInfantInterviews as TopicMaleMiddle AgedAdvance care planningadvance directivesdecision-makingpediatricsresuscitation ordersterminal care

Identifiers

PMID27881828
PMCPMC5557107

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.