"The communication and support from the health professional is incredibly important": A qualitative study exploring the processes and practices that support parental decision-making about postmortem examination.
Journal
Prenatal diagnosis
ISSN: 1097-0223
Titre abrégé: Prenat Diagn
Pays: England
ID NLM: 8106540
Informations de publication
Date de publication:
12 2019
12 2019
Historique:
received:
05
06
2019
revised:
20
08
2019
accepted:
29
09
2019
pubmed:
5
11
2019
medline:
11
8
2020
entrez:
5
11
2019
Statut:
ppublish
Résumé
Consent rates for postmortem (PM) examination in the perinatal and paediatric setting have dropped significantly in the United Kingdom, the United States, and the Western Europe. We explored the factors that act as facilitators or barriers to consent and identified processes and practices that support parental decision-making. A qualitative study conducted with bereaved parents, parent advocates, and health care professionals in the United Kingdom. Analysis was conducted on 439 free-tect comments within a cross-sectional survey, interviews with a subset of 20 survey respondents and 25 health professionals, and a focus group with five parent advocates. Three broad parental decision-making groups were identified: 1, "Not open to postmortem examination"; 2, "Consent regardless of concerns"; and 3, "Initially undecided." Decisional drivers that were particularly important for this "undecided" group were "the initial approach," "adjustment and deliberation," "detailed discussion about the procedure," and "formal consent." The way in which these were managed by health care staff significantly impacted whether those parents' consented to PM, particularly for those who are ambivalent about the procedure. We propose a set of recommendations to improve the way PM counselling and consent is managed. Adopting such measures is likely to lead to improved family experience and more consistent and high-quality discussion regarding PM.
Sections du résumé
BACKGROUND
Consent rates for postmortem (PM) examination in the perinatal and paediatric setting have dropped significantly in the United Kingdom, the United States, and the Western Europe. We explored the factors that act as facilitators or barriers to consent and identified processes and practices that support parental decision-making.
METHODS
A qualitative study conducted with bereaved parents, parent advocates, and health care professionals in the United Kingdom. Analysis was conducted on 439 free-tect comments within a cross-sectional survey, interviews with a subset of 20 survey respondents and 25 health professionals, and a focus group with five parent advocates.
RESULTS
Three broad parental decision-making groups were identified: 1, "Not open to postmortem examination"; 2, "Consent regardless of concerns"; and 3, "Initially undecided." Decisional drivers that were particularly important for this "undecided" group were "the initial approach," "adjustment and deliberation," "detailed discussion about the procedure," and "formal consent." The way in which these were managed by health care staff significantly impacted whether those parents' consented to PM, particularly for those who are ambivalent about the procedure.
CONCLUSIONS
We propose a set of recommendations to improve the way PM counselling and consent is managed. Adopting such measures is likely to lead to improved family experience and more consistent and high-quality discussion regarding PM.
Identifiants
pubmed: 31682025
doi: 10.1002/pd.5575
pmc: PMC6973141
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1242-1253Subventions
Organisme : Department of Health
ID : NIPR-CS-012-002
Pays : United Kingdom
Organisme : Department of Health
ID : 14/168/02
Pays : United Kingdom
Organisme : Department of Health
ID : CDF-2017-10-037
Pays : United Kingdom
Organisme : Department of Health
ID : HTA/14/168/02
Pays : United Kingdom
Organisme : Department of Health
ID : ICA-CDRF-2017-03-053
Pays : United Kingdom
Informations de copyright
© 2019 The Authors. Prenatal Diagnosis published by John Wiley & Sons Ltd.
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