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

Abstract

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.

Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers

“…An additional weakness is the absence of demographic and bleeding related data on the carrier participants (e.g., ethnicity, bleeding score, factor levels), which would shed insight into whether the views expressed are unique to specific subset of carriers. Although the number of hemophilia carrier participants in focus groups was small (11 carriers in two groups), this sample size is in line with other similar qualitative studies that had 11–15 participants 16,22 . Similarly, our study design of in‐depth qualitative work via focus groups, supplemented by questionnaires for both carriers and health care providers, has been used in many similar studies 14,15,22,26 .…”

“…22,25,26 It is important to recognize the diversity of ways hemophilia affects women and acknowledge the impact an individuals' experience will have on their attitudes and beliefs, particularly those related to testing. 22,25 A challenge in interpreting our results is that most of our participants reported experiencing a number of bleeding symptoms during childhood or early adolescence, thus placing them within the category of women with hemophilia or symptomatic hemophilia carriers. As such, their personal experiences likely impact their desire for earlier carrier testing, and it is possible that asymptomatic hemophilia carriers would have different beliefs or attitudes regarding the timing of carrier testing.…”

“…Although the number of hemophilia carrier participants in focus groups was small (11 carriers in two groups), this sample size is in line with other similar qualitative studies that had 11-15 participants. 16,22 Similarly, our study design of in-depth qualitative work via focus groups, supplemented by questionnaires for both carriers and health care providers, has been used in many similar studies. 14,15,22,26 Another strength of our study is the wide age range of hemophilia carrier participants, 21-69 years of age, as women's experiences of being a hemophilia carrier has been documented as a process that evolves over time.…”

“…Our results clearly show a parental preference for earlier hemophilia carrier testing compared with health care providers, a finding that has been documented in a number of other studies. 22,25,26 It is important to recognize the diversity of ways hemophilia affects women and acknowledge the impact an individuals' experience will have on their attitudes and beliefs, particularly those related to testing. 22,25 A challenge in interpreting our results is that most of our participants reported experiencing a number of bleeding symptoms during childhood or early adolescence, thus placing them within the category of women with hemophilia or symptomatic hemophilia carriers.…”

“…Interested carrier participants who met eligibility criteria (self‐identified hemophilia carrier, ≥18 years, English speaking) were given full study information by email and verbal consent was obtained over the phone. Recruitment goal was 10–15 participants as similar studies found thematic saturation with these numbers 16,22 …”