“I really thought nothing could be done”: help-seeking behaviour among women with urinary incontinence

Background: This study explores help-seeking behaviour among women with Urinary Incontinence (UI). Help-seeking behaviour is interpreted as the result of a process which is influenced by several factors, such as the appraisal of symptoms, individual characteristics, experiences within the health-care system, especially with regard to health professionals’ reactions to personal needs, social norms, and information about health issues.Methods: The study was carried out between 2012 and 2014 in Northern Germany and followed an exploratory qualitative study design. Four semi-structured focus group interviews were undertaken with women affected by involuntary loss of urine. 49 women, aged 41 to 86 years old, participated in the focus groups. Thorough sampling of study participants was carried out to warrant demographic and cultural variation and, resultantly, the completeness of perspectives relevant to this field. The verbatim transcripts of the interviews were analyzed following the content analysis method of Mayring. The analysis combined deductive and inductive approaches.  Results: Important barriers to seeking medical help were identified: women’s interpretation of UI as a non-medical problem, the lack of knowledge about the causes and treatment of UI, shame and taboo, and the problem of naming “it”. Also, the study results showed factors which supported women’s decision to seek medical help, notably the severity of symptoms or the women’s feeling of losing control of her bodily functions and significant parts of everyday life.Conclusion: The results of the study allow recommendations about measures that can be taken to improve the situation of women affected with UI.

Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of Empower-DSD

Background: Differences in sexual development (DSD) are rare diseases, which affect the chromosomal, anatomical or gonadal sex differentiation. Although patient education is recommended as essential in a holistic care approach, standardised programmes are still lacking. The present protocol describes the aims, study design and methods of the Empower-DSD project, which developed an age-adapted multidisciplinary education programme to improve the diagnosis-specific knowledge, skills and empowerment of patients and their parents. Methods: The new patient education programme was developed for children, adolescents and young adults with congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome or XX-/or XY-DSD and their parents. The quantitative and qualitative evaluation methods include standardised questionnaires, semi-structured interviews, and participatory observation. The main outcomes (assessed three and six months after the end of the programme) are health-related quality of life, disease burden, coping, and diagnosis-specific knowledge. The qualitative evaluation examines individual expectations and perceptions of the programme. The results of the quantitative and qualitative evaluation will be triangulated. Discussion: The study Empower-DSD was designed to reduce knowledge gaps regarding the feasibility, acceptance and effects of standardised patient education programmes for children and youth with DSD and their parents. A modular structured patient education programme with four generic and three diagnosis-specific modules based on the ModuS concept previously established for other chronic diseases was developed. The topics, learning objectives and recommended teaching methods are summarised in the structured curricula, one for each diagnosis and age group. At five study centres, 56 trainers were qualified for the implementation of the training programmes. A total of 336 subjects have been already enrolled in the study. The recruitment will go on until August 2022, the last follow-up survey is scheduled for February 2023. The results will help improve multidisciplinary and integrated care for children and youth with DSD and their families. Trial registration: German Clinical Trials Register, DRKS00023096. Registered 8 October 2020 - Retrospectively registered

Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study

Background: Current recommendations define a structured diagnostic process, transparent information, and psychosocial support by a specialized, multi-professional team as central in the care for children and adolescents with genital variations and a suspected difference of sex development (DSD). The active involvement of the child and their parents in shared decision-making should result in an individualized care plan. So far, this process has not been standardized. Methods: Within the Empower-DSD study, a team of professionals and representatives of patient advocacy groups developed a new diagnostic and information management program based on current recommendations and existing patient information. Results: The information management defines and standardizes generic care elements for the first weeks after a suspected DSD diagnosis. Three different tools were developed: a guideline for the specialized multiprofessional team, a personal health record and information kit for the child with DSD and their family, and a booklet for medical staff not specialized in DSD. Conclusions: The new information management offers guidance for patients and professionals during the first weeks after a DSD diagnosis is suspected. The developed tools’ evaluation will provide further insight into the diagnostic and information-sharing process as well as into all of the involved stakeholders’ needs