Date Published: July 9, 2012
Publisher: Hindawi Publishing Corporation
Author(s): Jürg C. Streuli, Birgit Köhler, Knut Werner-Rosen, Christine Mitchell.
Treatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “appropriate” care and treatment is still very broad and critics point at major gaps between ethical guidelines and current clinical practice. Based on a qualitative study with 27 members of multidisciplinary teams and support groups, we supplement the professional consensus statements and current ethical guidelines with 14 requirements from four different perspectives, to characterize more fully the responsible treatment and support of children and families affected by DSD. Overall, our findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies.
The care of a child with a disorder or difference of sex development (DSD) requires a long-term management strategy that should involve several health professionals who possess the ability to support such children and their families, providing care, protection, and participation in decisions . Frontline primary and specialist health professionals must recognize such children’s vulnerability, their needs, their rights, their evolving capacities and contextual aspects including their parents’ fears, values, and beliefs. The well-being of children with DSD, their right of integrity, need for protection, prospects for autonomy, and capacity to participate in informed consent or assent, all, vary individually in accord with the child’s development and history [2–4].
From 2009 to 2012 we conducted several projects studying attitudes and procedures in the context of DSD. Data were collected in one-on-one interviews (N = 20) and one focus group accompanied by a review of the literature. The semi structured interviews ranged from 35 minutes to 2 hours and contained at least one case example (parents of a newborn child with ambiguous genitals who are uncertain about what to do) as well as questions concerning relevant values, principles, and facts. All participants were either part of a multidisciplinary team (in total we studied 5 teams in Switzerland and Germany) or part of a support group (2 mothers, 1 patient, and 1 activist). In total, 27 persons were included. A list of professional background and current clinical experience (represented with the number of treated or supported DSD patients or families per year) is shown in Table 1. All interviews were transcribed verbatim. Transcripts were entered into a qualitative data analysis program (ATLAS.ti. 2011, Version 6.2. Berlin, Scientific Software Development). Interviews were conducted in German. Relevant and cited parts of the transcript were translated by an independent translator and double-checked by one of the author.
Investigators developed a preliminary framework of descriptive, normative, and linguistic information extracted from participants’ statements, resulting in themes to outline the key points of professionalism concerning DSD. The analysis was based on a modified method of interpretative phenomenological analysis facilitated by software for content analysis (ATLAS.ti, 2011, version 6.2, Berlin, Scientific Software Development). The institutional review board of the Canton of Zurich approved the study.
The content analysis revealed 14 abilities or skills, which we have grouped into four categories of professionalism listed in Table 1, which lists the frequency (in absolute numbers) of codified interview passages for themes passages for higher-order themes substantiated by selected samples from the interviews.
A main goal of pediatrics is to provide the opportunity for children to achieve their maximum potential for coping with current and future demands. The same can be stated for DSD as follows.Neonatologist: “We mainly talked about the parents’ perspective. The most important, however, is the individual, the child. And if we have ethical questions, we always should take into account where and how this particular child will be in twenty years. That’s the main point.” (ID21:89).
Childhood is a period of relative vulnerability and dependency  and relationships play a particularly important role. Interviewer: “Can you tell me something about the quality of life of the person that you imagined in her adult life, in her future?”Child and adolescent psychiatrist: “Well actually [she’s doing] very well, because she is well embedded in her family, because she has stability in herself, also with respect to her difference [⋯].” (ID14:9).Neonatologist: “The most important is bonding [between the child and its parents]. [⋯] First there must be a bond, the rest is coming after” (ID22:8).
Many professionals emphasized in the interviews that a decision is not a one-time event nor does a decision fix something forever. Rather, a decision is part of a process, which must be made in close contact with all the decision makers.
Whether a surgeon is doing surgery on a child’s genitals or a psychologist is talking with parents about their fears and needs, both are clinical interventions and both can be done in a more or less professional way. In the last 20 years certain errors in earlier treatment regimes have become well known and were mentioned by almost all interviewees. Moreover, according to the interviews, most professionals developed a critical distance to their own treatment regime: Pediatric Surgeon: “Well, the really critical statements [against genital surgery] are not coming from CAH-groups but from others. No doubt they are justified and it helped to raise our awareness and in that sense the discussion for me is positive, in a way that the clitoris should be saved, spared and [smiling] caught our full attention again. [⋯] [T]his even makes sense as a possibility and the ongoing development in this field will give us more knowledge.” (ID16:10).
The 2005 Consensus Statement summarized major changes in the care, treatment, and support of patients with DSD and pointed to the need for multidisciplinary teams. Subsequently we analyzed qualitative interviews of members and collaborators of such multidisciplinary teams, to understand and systematically summarize their opinions about the necessary qualifications of those caring for persons affected by DSD.
In view of the comprehensive and highly influential consensus statement, our results pointed at different enduring difficulties: first, a need for discussion about ensuring quality and education; second, a need for better collaboration and provision of various options complementary or alternatively to surgical and medical treatment; third, a need for greater skills related to an improved awareness of the impact of medicalized communication and problem-solving and fourth, strengthened abilities to educate parents and their children towards uncertainties in current medical treatments, giving them as much information and choice as possible for coping with current and future situations. In conclusion, the analysis reinforced the merit of a multidisciplinary team and made the often studied, discussed, and criticized genital surgery a secondary consideration. A nuanced understanding of professionalism concerning DSD embraces the ability of different disciplines, experts, and support groups to provide treatment and support of affected persons in a responsible, comprehensive but sensitive way as summarized here.