| | Target population | Target patient group: adolescents (according to WHO-definition) with the congenital malformation MRKHS
Inclusion criteria: females with treatment for this reason at the German Center for Rare Genital Malformations in Women (ZSGF) during the past 10 years
Disease list for inclusion (ICD 10 codes and description): Q 52 Other congenital malformations of female genitalia: MRKHS-Q52.8 Other specified congenital malformations of female genitalia
Exclusion criteria: treatment for another gynaecologic disorder
Target expert group I: persons at present or previously involved in health care and support of the target patient group: for example, partners, parents, medical professionals, and allied health professionals
Inclusion criteria: involvement in treatment or (psycho-)social support of the target patient groups, within a period of the last ten years
Exclusion criteria: no involvement in treatment or support
Target expert group II: interested persons, for example, allied health professionals, social workers, teachers, health policy makers, statutory health insurances, The (German) Federal Joint Committee (Gemeinsamer Bundesausschuss), health administration professionals, not necessarily at present or previously involved in care or support of the target patient group
Inclusion criteria: volunteer to take part in the public workshop
For all participants the following exclusion criteria are applicable, in addition to the mentioned target group specific criteria:
insufficient ability to speak and read German, insufficient ability to consent (e.g., debility), informed consent not given in written form |
| | Sample size | Target patient group (Part 2): 25
Target expert group I (Part 3): 24 (12 medical professionals and 12 others)
Target expert group II for communicative validation, preference finding (Workshop, Phase 5): up to 50 volunteers (in addition to volunteers out of the target patient group and expert groups I) |
| | Data collection | Phase 1: evaluation of literature, expert-interviews with experts in the field and appraisal of on-going offers (e.g., at the ZSGF)
Phase 2: guided patient interviews with narrative elements (audio-documented, interview by female researchers and health and social scientists), guided interviews with narrative elements with partners (interview by male researcher, psychologist, and health scientists)
Phase 3: target expert group I addressed by a short questionnaire (per mail) for self-completion, additionally semi-structured telephone expert interviews
Phase 4: scenario technique (Geschka et al. 1982 [34])
Phase 5: target patient group, target expert groups I and II included in workshop for communicative validation (Open Space Technology), addressed by questionnaires for rating and preference finding within this context |
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