Psychological Aspects of the Treatment of Patients With Disorders of Sex Development

David E. Sandberg, Ph.D.; Melissa Gardner, M.A.; Peggy T. Cohen-Kettenis, Ph.D.

Disclosures

Semin Reprod Med. 2012;30(5):443-452. 

In This Article

Summary

It has hopefully become apparent to the reader of this review that direct effect conceptual models ([Fig. 1.I]) designed to account for the course of psychological development of persons born with DSD are certain to oversimplify the process and mislead both researchers and healthcare providers. Instead, more complex models—developmental pathways—reflecting the sorts of influences and choices described in the sections above will hopefully generate novel ideas and strategies to enhance HRQoL outcomes in DSD. As noted by Pickles and Hill:[2]

The developmental pathway is a remarkably productive metaphor. … At its simplest, the idea of a pathway suggests a route that is traveled over time, in which there are constraints over the directions the traveler can take, and there is an ordered sequence of events or experiences… if we envisage a traveler (walker) taking one of a number of possible pathways over a changing terrain, for example, encompassing relatively easy walking before climbing up steep mountain paths… If developmental pathways resemble such physical paths, we can make predictions, such as that there will be phases of the journey where the path taken by an individual is highly predictable but punctuated by points at which choices are made among different paths…. The pathway metaphor also provokes ideas regarding mechanisms in development. For example, there are multiple ways in which decisions regarding which path to take can be made. They can be based on an overview of the ultimate aim or destination of the journey…or they may be determined by immediate factors, such as whether the visible path looks easy or difficult. A path may be chosen because it is desirable, or because it is the only one remaining after others have been rejected, for example, because they seem too risky. Decisions at any one point are also influenced by the cumulative effects of the journey on the traveler. The weary walker is likely to choose the easier path! Furthermore, the choice of path may be the result of the joint effects of such different mechanisms and may vary as the path is traversed. (pp. 212–13).

The "pathway" metaphor can be as productive for studying the psychological development of persons with DSD as it has been in the much broader field of child development and developmental psychopathology. It is easy to imagine how decisions made by parents for or against early surgery, for example, might alter the path the person with a DSD takes on their personal journey. By studying a large number of people with DSD for whom different decisions were made, or who themselves made varying choices when older, it may be possible to create a "taxonomy of travelers."[2]

Finally, an additional thought about the role of the mental health provider member of the healthcare team: in addition to their contribution as educator and counselor regarding the psychological aspects of DSD, the mental health provider is potentially in a unique position among all the members of the team to facilitate the group process within the team and between the team and the family. The extensive business literature on team performance and organizational development has been extended to healthcare and the function of interdisciplinary teams.[77–80] Among all the healthcare specialists on the DSD, the mental health provider is most likely the one who has been exposed to the concepts and received training in managing these processes.

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