- Synthesis of the study and links with the literature
The qualitative study on on the experience of living with hypospadias carried out by Walker (1998) contains many items of interest.
First, the researcher who undertook it has hypospadias, and this certainly helped him to better understand the implications of this condition for those affected. Recently, Berenbaum (2003) has underlined the methodological importance of being able to review the consequences of congenital conditions of the external genital organs in longitudinal studies of the experience of affected individuals
Second, the themes which emerged from the study were able to depict the experience of hypospadias from a perspective which was not only all-encompassing (physical, psychological, sexual, etc), but which also took into account the individual journeys of people throughout their lives.
Third, this method had the merit of broadening out certain data which appeared in the quantitative studies published on the subject of hypospadias. For example, the doubts regarding masculinity which were observed in the study by Berg & Berg (1983b) could be resolved in the light of these results [54]. Other studies related to the development of gender in children born with hypospadias (Sandberg, Meyer-Bahlburg, Yager et al., 1995; see also Sandberg, Meyer-Bahlburg, Aranoff et al., 1989), could also be enhanced by a consideration of the psychosocial aspects of hypospadias as well as the psycho-endocrinal. Equally, I think that the ‘decrease of self-esteem’ reported by Berg et al. (1982) in patients with hypospadias could be linked to the stigmatization related to their penile deficiency. One finding which is certainly clarified by Walker’s research (1998) is that the feelings of embarrassment stemming from the consciousness of having a genital difference – observed in the studies of Mureau et al. (1995c) – can be blamed largely on the lack of discussion about hypospadias in the family and with the medical profession. As in other earlier studies (Robertson & Walker, 1975), the issue of hypospadias being guarded as ‘secret information’ by family members was also predominant. The fears of sexual intimacy which were discovered by the Dutch team in their work with children, adolescents and adults operated upon for hypospadias (Mureau et al., 1995a, 1995b), may in the same way be understood through a developmental perspective.
Fourth, I would underline that Walker’s research (1998) brought a more positive outlook than that of other earlier research, stressing as it did the capacity for recovery on the part of people affected by hypospadias, following a deep crisis at some moment in their lives.
Fifth, there was also the fundamental concept of being able to meet other men affected by hypospadias. I would stress here, in passing, that the need to meet other similar people, via peer support groups, holds an importance similar to that for individuals born with other congenital conditions affecting the genital organs, such as intersexual conditions (Diamond, 1997 ; Diamond & Sigmundson, 1997; Preeves, 1999).
Sixth, Walker (1998) has emphasized through his research various responsibilities which apply not only to professionals in the fields of mental health and medicine, but also to members of the family. He proposed that these people should be more open to questions from those affected by hypospadias, and should encourage discussion about the condition. He calls also for change in the protocols surrounding treatment for hypospadias with a view to including a psychological support service throughout the development of the individuals concerned (see Berenbaum, 2003).
- Conclusion
The literature on psychological, psychosexual and psychosocial consequences of hypospadias is relatively restricted. Nevertheless, I believe that it offers numerous keys to a better understanding of the problems and challenges faced by individuals affected by this anatomical variation of the urethra.
The first series of studies carried out by the Swedish research team presented the experiences of men who had been operated on for hypospadias. These authors clearly showed the existence, even after surgery, of psychological effects which impacted on the later development of the individuals concerned. They also highlighted the role of psychosocial factors in some of the difficulties which may be encountered (e.g., influence of the family and peers, and symbolic importance of the penis in Western society).
The second series of studies, carried out by the Dutch research team, made it clear that there were some differences in the way in which people with hypospadias viewed their penis. They were also able to show that a number of problems could arise for such people when circumstances risked their condition being discovered (e.g., seeking sexual interactions, or needing to undress in front of others).
In both these studies, it became clear that there was a growing need for psychological or sexual support of a professional kind.
The qualitative research delved deeper into several issues which had already been researched in the past. But above all, it highlighted the lack of support offered to people with hypospadias by either the medical profession or the family. One of the strongest points of this research was its ability to stress the importance of providing good information and education about hypospadias so that this condition is no longer seen as something shameful. Too often, hypospadias has been perceived as something abnormal which it is vital to hide. The author has stressed the necessity to destigmatize the condition through meeting other people affected by hypospadias. Being able to express one’s own feelings and experience of hypospadias to trustworthy people has an extremely beneficial psychological effect.
GENERAL CONCLUSION
This, then, is the end of this work about research on hypospadias. While this account is certainly incomplete, overall I think it helps to foster a better understanding of the possible psychological consequences related to this particular congenital condition.
Although relatively common, hypospadias remains very little discussed today in the field of psychology. However, as I have tried to show, the psychological implications of such a condition are not minor. But the greater part of current research is more centered on the physical aspects of hypospadias than on the impact it may have on the people who experience it.
The principal focus of this paper was to establish whether there were psychological consequences associated with having hypospadias, a question I can now answer in the affirmative. I have shown in this work that surgical operations may be necessary but they are not sufficient: the few studies carried out in this field indicate that every operation requires, to some extent, the support of a psychologist specially trained in this field. Indeed, the influence of both the family and the medical profession have a major role to play in helping the affected boy or man to confront and accept his condition. And better communication and information about hypospadias, as well as simply revealing its existence, will permit better integration of the feelings of difference which can occur through comparison with the images of male genitalia which are usually encountered in our society.
I have drawn my conclusion from research work which had access to representative populations. In this sense, I can see a limitation in my work, since it was not possible for me to verify these conclusions for myself. A way forward which would improve this work would be to conduct further qualitative research, since I believe the information I gathered from my interviews was insufficient to be introduced here in a strictly scientific way. The people with whom I had contact experienced enormous difficulty and huge emotional challenges in speaking about their condition, and in most cases it still remains a secret for them. And, unfortunately, the research framework of a thesis scarcely lends itself to therapy.
Finally, I would like to highlight my desire to continue my research in this field. This is only one paper, and much more could be done. It would be interesting, for example, to ask some new questions; for example, to research why, given the frequency of this condition, it remains still largely unknown today. On this matter, many authors (Dorais, 1999; Dreger, 1999; Kessler, 1998) have shown that the Western society in which we live tends to perceive the sexual organs along strictly divided gender lines. However, with the existence of not only hypospadias but also other congenital anatomical variations of the external sex organs which can occur in both men and women, it’s a fact that human external sexual anatomy can appear in more forms than are normally represented. Perhaps, instead of a binary vision of the sexes, we should rather accept that a ‘continuum’ exists.
[42] Between 1952 and 1963, to be more precise.
[43] The semi-structured interview comprised first a collection of psychiatric symptoms in two versions – one for adults and one for children – and second general questions (e.g., family history, social activities, relations with peers at school), questions related to sexuality (e.g., detailed sexual history) and more specific questions on the medical condition of hypospadias (e.g., family attitudes to the condition, memories of hospitalization). The personality test was done using the Rorschach test (1921) (for details, see Berg et al., 1982, pp. 400-402).
[44] Gender identity was examined through the ‘Franck Drawing Completion Test ‘ (FDCT; Franck & Rosen, 1949) and gender role behavior through the ‘Gough Femininity Scale’ (GFS; Gough, 1952) (for details, see Berg & Berg, 1983b, pp. 156-157).
[45] These questionnaires measured the degree of satisfaction with different aspects of the penis such as, for example, the size of the penis when flaccid and when erect, the position of the urethral meatus, the shape of the glans and the general appearance of the penis. Two supplementary questions were also asked with the aim of finding out whether the subjects had already received comments on the appearance of their penis, and whether the subjects considered their penis to be similar in appearance to that of other men/boys.
[46] It is notable that relatively similar data has emerged from a study carried out comparatively recently, in Italy, by Mondaini et al. (2002). The available sample was composed of 42 adults, aged over 18, with hypospadias (control group numbered 500). The results indicated that 22% (against 9% in the control group) had difficulties in initiating contact with the opposite sex; 24% reported hiding their genital organs in public situations (e.g., in showers after sport); and 26% (against 2%) evaluated negatively the appearance of their genital organs.
[47] Evaluated through the ‘Junior Dutch Personality Questionnaire’ (DPQ-J; Luteijn, Van Dijk & Van der Ploeg, 1989) with children and adolescents, and by the ‘Dutch Personality Questionnaire’ (DPQ; Luteijn, Starren & Van Dijk, 1975) with adults.
[48] Evaluated by the ‘ ocial Anxiety Scale for Children’ (SAS-C ; Dekking, 1993) for children, and by the ‘Contact with Others Inventory’ (COI ; Van Dam-Baggen & Kraaimaat, 1987) for adults.
[49] Evaluated by the ‘Child Behavior Checklist’ (CBL ; Achenbach, 1991) and the ‘Young Adult Self Report’ (YSR, Achenbach, 1991) with children and by the ‘Young Adult Self Report’ (YASR ; Achenbach, 1990) with adults.
[50] In an article tackling the issue of sexuality after an operation for hypospadias, the surgeon A. Bracka (1999) confirmed that patients having a penis less than 9 cm long when erect reported being satisfied with their sexual relations and that a penis of reduced length causes few functional difficulties once the patients succeeded in overcoming their initial inhibitions and have sexual relationships.
[51] The medical characteristics of the participants, at birth, was varied. They ranged from the presence of peno-scrotal hypospadias (posterior form), to balano-preputial hypospadias (anterior form). Except for one participant, all other participants in the study (including the researcher) had received one (or more) surgical repair operation. The operations were carried out between the ages of 3 and 9.
[52] These feelings did not become fixed until the participants started to explore sexuality and encountered cultural bias concerning ‘genital anomalies’ and ‘male power’ as represented in society (Walker, 1998, p. 98).
[53] One of the reasons for this lack comes from the medical point of view that if hypospadias is surgically repaired, the psychological problems are resolved (Walker, 1998, p. 216).
[54] For Berg & Berg (1983b, p. 162), it was quite possible that the continued perception of a deficient body could lead to disturbance in the gender identity of the person (the feeling of belonging to one sex and not the other, in this case the male sex).