98 Chapter 6 METHODS Design Focus- group interviews were conducted to explore VWD women’s wants and needs for support from professionals to enhance their well- being when confronted with HMB. Data were collected according to principles and guidelines for conducting focus groups (10, 11). Settings and participants Focus groups were assembled in the summer of 2012. Group 1 (n = 5) consisted of 4 women who had had a hysterectomy and one who had had a EA. Group 2 (n = 6) consisted of women who all had undergone a hysterectomy for the indication HMB. They participated on a voluntary basis. They were identified through participation in a nationwide cross- sectional study of VWD in the Netherlands (4). The inclusion criteria were as follows: at least 18 years of age, fluent in Dutch, diagnosed with VWD (based VWF antigen and/or activity levels <30 IU/dL) and having reported surgical therapy for HMB in the WiN study. Thirty-seven women met the inclusion criteria. Written study in-formation was sent. A week after sending this information, the first author contacted them by phone. During this contact, the inclusion criteria were checked, and any questions were addressed. Of the 37 women approached for our study, a total of 12 women agreed to participate in the 2 focus- group discussions (response 32%). The aim was to recruit about 5-10 participants per focus group (10-12). Confidentiality was assured, and all participants provided written informed consent. The Ethics Committee of the Erasmus University of Rotterdam approved this focus- group study. Study participants were randomly assigned to 2 focus groups. The focus groups were organized at the Department of Haematology, Erasmus University of Rotterdam, the Netherlands, at a time and date convenient for the participants and researchers. Participants were informed about the meeting in writing. One participant renounced participation because of a social anxiety disorder. The first author spoke to her by telephone and discussed in- depth her experiences. Her data were used as background and not included in the analysis. The 11 participants received a small gift voucher (Table 1, Characteristics of the participants). Data collection According to principles and guidelines for conducting focus groups, each focus group lasted between 2 and 2-and-a-half hours (10, 12). The focus-group discussions were audio-taped with per-mission of the participants. The sessions were facilitated through a moderator with expertise in qualitative methods (HPE). During the interview, one of the investigators observed the focus- group interactions and asked in- depth questions (YVS). Her written notes were used to supplement the interview transcripts. Neither the moderator (HPE) nor the observer (YVS) was personally or professionally related to the participants. The discussions were directed with a semi structured interview guide composed of questions based on a review of the literature and generated by the research team according to recommended focusgroup methodology (HPE, YVS) (10, 12).
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