TY - JOUR
T1 - A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy
AU - Punt, Marieke C.
AU - Teela, Lorynn
AU - Fischer, Kathelijn
AU - Bloemenkamp, Kitty W. M.
AU - Lely, A. Titia
AU - Driessens, Mariette H. E.
AU - Pekel, Lynnda
AU - Haverman, Lotte
AU - van Galen, Karin P. M.
N1 - Funding Information: Punt MC, Teela L, Bloemenkamp KWM, Pekel L, Driessens MHE, Haverman L, Lely AT: none. Fischer K: KF has received speaker's fees from Bayer, Baxter/Shire, Biotest, CSL Behring, Octapharma, Pfizer and Novo Nordisk; performed consultancy for Bayer, Baxter/Shire, Biogen, CSL Behring, Freeline, Novo Nordisk, Pfizer, Roche and SOBI; and has received research support from Bayer, Pfizer, Baxter/Shire and Novo Nordisk. van Galen KPM: received unrestricted research grants from CSL Behring and Bayer in the past and speaker's fees from Takeda and Amgen. Publisher Copyright: © 2021 The Authors. Haemophilia published by John Wiley & Sons Ltd.
PY - 2021/11
Y1 - 2021/11
N2 - Introduction: Haemophilia carriers (HCs) face considerable haemostatic and psychological challenges during reproduction. Aim: To 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 methods: Focus 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. Results: Fifteen 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. Conclusions: In 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.
AB - Introduction: Haemophilia carriers (HCs) face considerable haemostatic and psychological challenges during reproduction. Aim: To 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 methods: Focus 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. Results: Fifteen 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. Conclusions: In 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.
KW - haemophilia
KW - healthcare
KW - postpartum period
KW - preconception
KW - pregnancy
KW - qualitative study
UR - http://www.scopus.com/inward/record.url?scp=85113158636&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/hae.14396
DO - https://doi.org/10.1111/hae.14396
M3 - Article
C2 - 34415675
SN - 1351-8216
VL - 27
SP - e675-e682
JO - Haemophilia
JF - Haemophilia
IS - 6
ER -