Empowering Patients and Health Professionals to Address Sexual Health in the Context of Anorectal Malformations and Hirschsprung’s Disease

Abstract

The aim of this study is to develop a tool that is aligned with patients’ and health professionals’ needs to address sexual health in the context of anorectal malformations and Hirschsprung’s disease. A multiphased participatory action–research was conducted. First, an inventory of needs was made through interviews (11 patients, 11 professionals), three online focus groups (4 patients, 20 professionals), and a questionnaire (38 patients). Subsequently, four cocreation sessions with in total four patients and nine professionals were organized to translate the needs into a tool (in the form of a website). The websites’ functionality was assessed via a questionnaire ( n = 34). The website, directed to patients, their parents, and professionals, stimulates awareness, fills knowledge gaps, and shows possibilities for support. The website is expected to change restrictive attitudes toward sexual health and improve the legitimization of the topic needed for the allocation of resources and sexologists’ involvement in current care pathways.

The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey

“…A recent multiphased action research, in the context of ARM and HSCR, showed how a Web site can also address sexual health increasing the awareness, filling current knowledge gaps, and fostering patients' empowerment. 37…”

“…A recent multiphased action research, in the context of ARM and HSCR, showed how a Web site can also address sexual health increasing the awareness, filling current knowledge gaps, and fostering patients' empowerment. 37 Only four hospitals seem to refer transitional patients to psychologists or counselors. Since the link between healthrelated QoL and functional impairment in ARM and HSCR is mediated by personal characteristics and psychosocial resources (self-efficacy, social support, coping styles), which positively impact mental health and medical adherence, 22,38,39 the role of psychological counseling should be more considered.…”

Sexual well‐being needs of patients with chronic illness expressed in health care: A scoping review

“…Following the steps of Peters et al (2020), the objective and question (a), as mentioned in section 3, as well as the aligning inclusion criteria, were developed (b). The following approach concerning evi-…”

“…This scoping review thus forms the basis for further empirical research on the needs of chronically ill patients expressed to nurses. The framework according to Peters et al (2020) was utilized for this approach.…”

“…Concerning the steps of selecting (e) and extracting (f) the evidence by Peters et al (2020), the search in the search engine BASE and databases search yielded a total of 1477 results, of which 127 titles were classified as suitable. Duplicates were removed (n = 29).…”