This readme.txt file was generated on 2023-12-21 by Ash, Amy (study staff); edited 2024-02-16 by data curator Recommended citation for the data: Robinson, Beatrice; Connor, Jennifer. (2023). Our body, Our health: Qualitative Metadata. Retrieved from the Data Repository for the University of Minnesota, https://doi.org/10.13020/DKB8-E892. ------------------- GENERAL INFORMATION ------------------- 1. Title of Dataset: Our body, Our health: Qualitative Metadata 2. Author Information Author Contact: Jennifer Connor (conno043@umn.edu) Name: Beatrice Robinson Institution: University of Minnesota Email:robin009@umn.edu ORCID:0000-0002-9368-2295 Name: Jennifer Connor Institution:University of Minnesota Email:conno043@umn.edu ORCID:0000-0003-4403-1442 3. Date published or finalized for release: 2023-12-20 4. Date of data collection: 2019-06-24 to 2019-10-09 5. Geographic location of data collection: Minnesota (Twin Cities & surrounding suburbs) 6. Information about funding sources that supported the collection of the data: National Institute of Health- Eunice Kennedy Shriver National Institute of Child Health Institute & Human Development 7. Overview of the data: The National Pain Strategy notes the importance of addressing pain in minority populations to reduce health disparities. One such population is female refugees who have been victim to female genital cutting (FGC) --- which is known to cause sexual pain. The objective of the proposed research is to collect empirical data to (1) inform the conceptualization of sexual pain and other outcomes among Somali women living in Minnesota who have experienced FGC, (2) promote healthcare practices that minimize sexual pain, and (3) develop decision- making tool(s) and education seminars driven by study findings. The majority of Somali girls undergo infibulation when originally cut, which involves stitching the vaginal opening shut. Deinfibulation (i.e. opening the circumcision/infibulation scar) may decrease pain and is necessary before vaginal birth. It is recommended before labor and delivery; however, many patients wait until labor and delivery to undergo deinfibulation – thus increasing a risk in tears. Little is known about how sexual pain and sexual function are impacted by the timing of deinfibulation. To better understand sexual pain in relation to FGC, this study relied upon conceptual models that utilize a biopsychosocial approach, integrating biological, psychological, and cultural considerations. These models include fear-avoidance, endurance, and resilience. We partnered with a community-based organization (SoLaHmo) to conduct 75 qualitative interviews of Somali-American married women 18-45 years who have experienced FGC to accomplish the following aims: Aim 1: Qualitatively investigate sexual pain characteristics and meaning ascribed to sexual pain. Aim 2: Establish reference levels using descriptive statistics to quantify sexual pain characteristics (presence, frequency, intensity), sexual function, pain responses (fear avoidance, endurance, resilience), and moderator variables (acculturation and shared decision making) in this population. Aim 3: Among women who have vaginally delivered one or more babies, determine if sexual pain characteristics and sexual function are associated with the timing of deinfibulation with first child. Aim 4: Among women reporting sexual pain in Aim 3, determine if pain responses (fear avoidance, endurance, resilience) are associated with sexual pain and sexual function, and whether these associations are modified by degree of acculturation --- while adjusting for timing of deinfibulation. Study 1 Qualitative Interviews: Seventy-five 30-90 minute face-to-face semi-structured interviews were conducted at locations selected by the participant (home, clinic, office) by one of our three Somali interviewers. Forty (67%) interviews were conducted in Somali. Interviews were audio-recorded, verbally translated into English (as necessary), and transcribed by a professional transcription service. This record contains supporting metadata files: study protocol, qualitative data dictionary and coding tree, interview instruments (one for participants aged 45 and over and one for participants aged 44 and under), recruitment processes, and interview processes. Due to the sensitive nature of the study and informed consent process, the transcripts cannot be released for any reason. The raw data is stored at the Institute for Sexual and Gender Health at the University of Minnesota Medical School. -------------------------- SHARING/ACCESS INFORMATION -------------------------- 1. Licenses/restrictions placed on the data: CC0 1.0 Universal (http://creativecommons.org/publicdomain/zero/1.0/) 2. Links to publications that cite or use the data: Johnson-Agbakwu, C. E., Chen, M., Salad, M., Chaisson, N., Connor, J. J., & Robinson, B. B. E. (2023). Female genital cutting (FGC) type: proposing a multifaceted, interactive method for FGC self-assessment. The Journal of Sexual Medicine, 20(11), 1292-1300. https://doi.org/10.1093/jsxmed/qdad101 Chaisson, N., Johnson-Agbakwu, C. E., Finch, A., Salad, M., Connor, J. J., Chen, M., & Robinson, B. B. E. (2023). Beautiful vulvas: expanding illustrative visual imagery of female genital cutting types. The Journal of Sexual Medicine, 20(11), 1301-1311. https://doi.org/10.1093/jsxmed/qdad102 Connor, J. J., Abdi, C., Chen, M., Salad, M., Pergament, S., Afey, F., ... & Robinson, B. B. E. (2023). Our Body Our Health (Jirkeena, Caafimaadkeena): Somali Women’s Narratives on Sexual Health. The Journal of Sex Research, 1-15. https://doi.org/10.1080/00224499.2023.2288077 3. Was data derived from another source? No 4. Terms of Use: Data Repository for the U of Minnesota (DRUM) By using these files, users agree to the Terms of Use. https://conservancy.umn.edu/pages/drum/policies/#terms-of-use --------------------- DATA & FILE OVERVIEW --------------------- File List Filename: OBOH Study 1 Data Dictionary.xlsx Short description: data dictionary - qualitative Filename: SOCIAL TEMPLATE PROTOCOL FGC&Sexual Pain_CLEAN.docx Short description: study protocol Filename: Translation Instructions 10.9.19.doc Short description: guide to translate audio interviews Filename: Interview Guide.doc Short description: reminders for completing a qualitative in person interview Filename: interview quality assurance procedure 8-15-19.docx Short description: interview quality assurance procedure Filename: Feedback Form-Template for Interviewers on qual interview 7-19-19.docx Short description: interview training feedback form Filename: Recruiter Log & contact form.doc Short description: recruitment form Filename: Recruitment Protocol 8-1-19.doc Short description: recruitment protocol and interviewer screener Filename: Study 1 Participant interview instrument 8.14.19.docx Short description: interview instrument - age 44 and under Filename: Study 1 45+ interview instrument 8.14.19.docx Short description: interview instrument - age 45 and over Filename: Duplicates in preservable formats.zip Short description: Duplicate files in preservable formats (pdf and csv) 2. Relationship between files: The first 10 files are metadata files to accompany the qualitative arm of the Our body, Our Health study. The raw qualitative data cannot be shared. The final file (.zip) are duplicates of the first 10 files transformed to preservable and interoperable file formats. -------------------------- METHODOLOGICAL INFORMATION -------------------------- 1. Description of methods used for collection/generation of data: qualitative interviews 2. Methods for processing the data: Interviews were recorded, then translated into English (as needed), then transcribed 3. Instrument- or software-specific information needed to interpret the data: Dedoose 4. Standards and calibration information, if appropriate: N/A 5. Environmental/experimental conditions: N/A 6. Describe any quality-assurance procedures performed on the data: University researchers read the first transcript and provided feedback. Somali interviews were translated into English in a two-step process. First, each interviewer/ translator verbally translated their interviews using a digital recorder to create English audio files. Second, a bilingual Somali intern and a bilingual Community Advisory Board member back-checked all translations to ensure translation consistency and accuracy. All interviews were transcribed professionally. 7. People involved with sample collection, processing, analysis and/or submission: Community Researchers, Community Engagement Specialists, Data Manager/Analyst, Co-Investigators, PI's ----------------------------------------- DATA-SPECIFIC INFORMATION FOR: ----------------------------------------- See OBOH Study 1 Data Dictionary.xlsx