Ethical dilemmas and legal aspects in contraceptive counselling for women with intellectual disability—Focus group interviews among midwives in Sweden

Abstract

Background Few studies have explored ethical and legal issues in contraceptive counselling among women with intellectual disability (ID). This study aimed to gain a deeper understanding of these issues during midwifery contraceptive counselling. Method The present authors interviewed 19 midwives in five focus groups in Sweden 2016 – 2017 and analysed data with content analysis. Results The participants expressed that women with intellectual disability have equal right to relationships and sexual expressions, but feared exposure to sexual exploitation/abuse. They experienced ethical dilemmas related to principles of fairness and autonomy, but strived to provide assistance in spite of the women's cognitive impairment, presence of supporting persons and uncertainty of optimal counselling. Organizational support was insufficient. Conclusions The midwives experienced ambivalence, uncertainty and ethical dilemmas in their counselling. They were, however, aware of legal aspects and strived for the women's best interest, right to self‐determination and autonomous choices. The participants wanted better professional teamwork and support.

How can sexual and reproductive health and rights be enhanced for young people with intellectual disability? – focus group interviews with staff in Sweden

“…Ensuring privacy and respecting a person's autonomy while at the same time protecting them from harm was another balance described by the participants. This dilemma was also described by midwives in relation to contraceptive counselling for women with ID [13,25]. In addition to their own strategies, the participants had several suggestions for improvement such as a clear mandate, improved interprofessional collaboration and supporting policies and guidelines.…”

Supporting Adults with Intellectual Disabilities with Relationships and Sex: A Systematic Review and Thematic Synthesis of Qualitative Research with Staff

“…Four further records were identified through the main author's manual search of key journals and Google Scholar, leading to a total of 17 articles. Further review of the 17 articles identified revealed that two of the selected papers [27,28], were separate publications originating from the same primary research. Although these had a somewhat different focus, a review of their content indicated that there was a significant degree of overlap.…”

“…Although these had a somewhat different focus, a review of their content indicated that there was a significant degree of overlap. As one of these two articles [27] provided a richer description of concepts represented in both studies, a decision was made to retain only that article.…”

“…Furthermore, since the publication of all three reviews, a number of qualitative research studies concerned with staff experiences in relation to their role of supporting the sexuality of adults with ID have been published [27][28][29][30][31][32]. In their discussion regarding the necessity of updating qualitative systematic reviews, France and colleagues [33] concluded that the emergence of new research, potentially contributing novel concepts, warrants an update.…”

Ethical dilemmas and legal ambivalence affects the midwives’ perception for providing sexual and reproductive health consultation to women with intellectual disability

“…Alongside non-existent guidelines about counselling women with ID, there is uncertainty about what optimal care is. The biases and ethical dilemmas experienced by midwives on providing contraceptive counselling is little researched and that is the focus of this study by Höglund and Larsson 3…”