Evidence map›Paper›PMID 34415675›Full record

ArticleHaemophilia : the official journal of the World Federation of Hemophilia2021

A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy.

Marieke C Punt, Lorynn Teela, Kathelijn Fischer, Kitty W M Bloemenkamp, A Titia Lely, Mariette H E Driessens, Lynnda Pekel, Lotte Haverman, Karin P M van Galen

Open access · hybridAbstract read
In one paragraph

Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
1.0field-weighted citation impact, top 23% of its field
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

6 citing papers in PubMed, 10 citations in OpenAlex.

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  5. A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy.Haemophilia : the official journal of the World Federation of Hemophilia · 2021
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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

9 authors at 6 institutions in 1 country.

Marieke C PuntVan Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.
Lorynn TeelaPsychosocial Department, Emma Children's Hospital Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Kathelijn FischerVan Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.
Kitty W M BloemenkampDepartment of Obstetrics, Birth Centre Wilhelmina's Children Hospital, Division Woman and Baby, Utrecht University, Utrecht, The Netherlands.
A Titia LelyDepartment of Obstetrics, Birth Centre Wilhelmina's Children Hospital, Division Woman and Baby, Utrecht University, Utrecht, The Netherlands.
Mariette H E DriessensDutch Society of Haemophilia Patients (NVHP), Nijkerk, The Netherlands.
Lynnda PekelDutch Society of Haemophilia Patients (NVHP), Nijkerk, The Netherlands.
Lotte HavermanPsychosocial Department, Emma Children's Hospital Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Karin P M van GalenVan Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.
University Medical Center Utrecht · NLDutch Cancer Society · NLAmsterdam University Medical Centers · NLEmma Kinderziekenhuis · NLUtrecht University · NLWilhelmina Children's Hospital · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionHaemophilia carriers (HCs) face considerable haemostatic and psychological challenges during reproduction.

aimTo explore the perspectives of HCs on healthcare in the current standard of haemophilia treatment during all reproductive phases: preconception, pregnancy, childbirth and the postpartum period. In addition, we examined the psychological impact of haemophilia during these phases. MATERIAL AND

methodsFocus group discussions (FGDs) and semi-structured interviews were conducted with HCs in January/February 2020 until data saturation was reached. All sessions were recorded, transcribed verbatim and analysed by two independent researchers through thematic content analysis using MAXQDA® software. The results were then discussed within the research team until consensus was reached. The constructed themes were shared with and reviewed by the HCs.

resultsFifteen HCs were included in three FGDs and four interviews. Five central themes were constructed: (1) communication by healthcare professionals, (2) lack of knowledge, (3) feeling insecure, (4) autonomy and (5) family experiences with haemophilia. Desired improvements in care mainly concerned counselling during preconception and pregnancy. This included timely access to comprehensive information during each consecutive phase, acceptance of HCs' choices by healthcare providers and healthcare tailored to the HC's family experience with haemophilia.

conclusionsIn recent years, haemophilia treatment has seen major advances, which could impact general and reproductive care for HCs. HCs indicated that reproductive care would benefit from a more personal and informative approach. Healthcare professionals could use these insights to adapt their consultations to meet the needs of these women when they are preparing for having children.

Indexed as

Hemophilia AChildDelivery, ObstetricFemaleFocus GroupsHumansParturitionPregnancyQualitative Researchhaemophiliahealthcarepostpartum periodpreconceptionpregnancyqualitative study

Identifiers

PMID34415675
PMCPMC9290707
OpenAlexW3194609262

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.