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Chapter 3: Psychological, psychosocial and psychosexual perspectives
This
chapter presents the principal studies which have been carried
out on the psychological,
psychosocial and psychosexual impact of
hypospadias.
2. First series of studies (Sweden, 1980's)
Svensson and his colleagues (Svensson, R. Berg and G. Berg, 1981) studied the psychological, psychosocial and psychosexual impact of hypospadias surgery on patients. Various aspects of these studies have been reported in different publications, but all used the same sample of subjects. The method of investigation consisted of semi-structured interviews and psychological testing, as described below. The results of the interviews and various tests were statistically analyzed.
Svensson et al. (1981) had access to a sample of 34 adult men aged between 21 and 34 years drawn from a population of patients treated for hypospadias (urethroplasties) during their childhood in the 1950's and 1960's [42], in a pediatric surgery service in the Stockholm region (Sweden).
In order to establish comparisons, a control group was composed of 36 men aged between 20 and 34 who had not had this type of surgery, but who had been operated on for appendicitis at around the same age.
2.3.1.
Delay in psychosexual development
One
of the first aspects
studied was related to psychosexual development (R. Berg, Svensson and Åström,
1981). When compared to the control group, the results of the interviews with
men who had been operated on for hypospadias showed that their first experiences
of a sexual nature (e.g., first flirtations, first sexual relations) happened at a
later age and that generally they had a significantly reduced number of sexual
partners. However, in spite of these differences, the majority of the men
interviewed reported having a relatively satisfying sex life (Berg et al., 1981).
The second aspect studied concerned the psychological implications of hypospadias repair and its repercussions on mental health (G. Berg & R. Berg, 1983a ; R. Berg, G. Berg and Svensson, 1982). Using two psychiatric interviews and a personality test
[43], the researchers established that the men who had had hypospadias operations considered themselves to have been more timid and isolated during childhood. During adulthood, they reported more symptoms of depression and anxiety, and encountered more difficulties in establishing interpersonal relationships. Finally, a tendency towards low self-esteem was observed in these subjects.
A third area
which the
research focused on was the
concept of gender identity and sexual orientation (R. Berg & G. Berg, 1983b).
According
to the authors, who used psychological testing to
measure these dimensions of psychosexual development
[44],
the adults who had been operated on during childhood seemed more uncertain regarding their masculinity. This
study, which also aimed to produce data on how the
group behaved with regard to typical masculine and feminine roles, found evidence that the group had a higher propensity to adopt
more feminine gender role
behavior. However, according to Berg & Berg (1983), little difference was
observed between the sexual orientation adopted by the target group and the
control group, with most reporting a heterosexual choice of
partner.
The
results of these studies clearly indicate that some differences exist between the psychological,
psychosexual and psychosocial development of men operated on for hypospadias and
men who have not received
this type of surgery. These discoveries led the authors to propose several
possible explanations.
Their first hypothesis was that there could be a link between the level of hormones in the hypospadias patients and the psychological traits they displayed. However, another study (R. Berg, G. Berg, Edman & Svensson, 1983c), demonstrated no significant relationship between the hormonal profiles and psychological characteristics such as personality traits. These results undermined the endocrinal hypothesis proposed by the researchers.
A
second explanation, of a more psychoanalytic flavor, supposed that genital
surgery, practiced at a psychologically vulnerable age (during the oedipal phase)
could lead to an exaggerated castration anxiety and disturbances of a neurotic
type (Berg & Berg, 1983a).
A
third explanation, more psychosocial in nature, is based on the importance of the penis-phallus, at least in western
culture: 'symbolically, the penis represents activity, self-affirmation,
social success, strength, masculinity, etc'
(Berg et al., 1982, p. 411).
Given the symbolic significance of the penis, it could be that a sense of
deficiency surrounding this organ has led to fears of incapacity or
incompetence, in the patients and their parents, which extend beyond the purely
physical function (e.g. urination or sexual function) and into the domain of
psychological function, social relations and sexual behavior. Moreover, the
development of the observed psychological characteristics, low self-esteem in
particular, could have been induced by the reaction of their peers regarding
their deficiency (e.g., mockery, jokes) (Berg & Berg,
1983a, 1983b).
The authors referred to the importance of
some kind of professional survey or follow-up for both children having surgery and their
parents in order to understand the nature of their responses to both
hypospadias and the experience of genital surgery.
Such a survey could help in the development of psychotherapeutic assistance specially adapted to the
needs of this group of people (Berg
& Berg, 1983a, 1983b ; Berg et al., 1982).
The
second
series of studies published, this time carried out by a team of Dutch
researchers, dates back to the middle of the 1990's. These studies aimed to
collect information on the genital perception (Mureau,
Slijper, Slob & Verhulst, 1995c), psychosexual development (Mureau, Slijper, Nijman et al., 1995a ; Mureau, Slijper, van der Meulen et al.,
1995b) and psychosocial development (Mureau, Slijper, Slob &
Verhulst, 1997) of patients operated on for hypospadias at different ages.
Again, this study was designed to compare data from subjects operated on for hypospadias with
data from a non-hypospadic control population.
The samples used by this research team came from a population of patients treated for hypospadias during childhood, in two medico-surgical departments attached to hospitals located in the Rotterdam region. One department specialized in plastic and reconstructive surgery; the other in pediatric urology. The patients treated in plastic/reconstructive surgery (between1960 and 1990) and those treated in pediatric urology (between 1980 and 1992) received surgical repairs (urethroplasty) giving different aesthetic results after the operations: technically speaking, the repairs were either 'ventral' (bringing the urethral meatus to the level of the coronal ridge) or 'terminal' (excavating a canal within the glans, bringing the urethral meatus to the tip).
Two
samples were organized, according to age. The first sample comprised 73
adults
aged 18
to 38 years who had all received ventral repairs. The second comprised 116
children and adolescents aged between 9 and 18 who, depending on the
department to which they were admitted, had ventral or terminal repairs.
The researchers formed two other control groups, composed of children and adolescents (88 in number) and adults (50 in number), who had not experienced surgery on the external genital organs, but who had been hospitalized during childhood, in the same hospital, for an inguinal hernia.
3.3.1. Different and more negative genital perception
The first study reviewed here was carried out on 'genital perception' (Mureau et al., 1995c). In this study, researchers wanted to know to what extent, following surgical treatment, the subjects with hypospadias continued to perceive differences between the appearance of their penis and that of others.
Accordi
ng to the authors, several factors play a role in the development of a different genital perception (Mureau et al., 1995c, pp. 290-291).A second factor is the level of a child's awareness of his penile abnormality. Very young children are not usually conscious of having a congenital variation of the penis and urethra. It is only as they grow up and their cognitive functions develop that they become conscious that their penis looks different to other people's (e.g. in comparison with their father, their brother(s) or their peers). Also, children may perceive differences in their genital appearance because, despite technical progress, hypospadias surgery never gives the penis a perfectly normal appearance (e.g., the penis appears to be circumcised).
A
third factor relates to the attitudes of the people around the
child. As shown in previous studies (Robertson & Walker, 1975), the parents
of children with hypospadias may be anxious about the future masculinity
of their children (e.g., his fertility or sexual potency). There is a risk of
these parental anxieties
being transmitted to the child and this may affect the child's capacity to accept
his bodily difference. The
responses of peers can also, in certain cases, increase a child's awareness of
being different (e.g. if he is unable to urinate
standing up or project his stream a certain distance), which may lead to him devaluing
his penis and avoiding situations where his difference may be
discovered (e.g., urinating in groups or publicly).
A fourth factor concerns unrealistic expectations regarding the aesthetic outcome of the operation, from the parent's point of view as well as the child's. Boys who have been told that their penis will be 'normal' after the surgery expect to have a penis which looks similar to that of other boys. But if their expectations are not fully realized they may feel disappointment and become fixated on the appearance of their penis.
Specific questionnaires measuring 'genital perception'
[45] were completed by the experimental subjects in two different versions: one for adults and one for children and adolescents. Statistical analysis of the replies to these questionnaires (Mureau et al. 1995c pp. 293-295) produced some significant information.The
first observation
concerns the perception of difference in the appearance of the penis, in
comparison with others. 78% of children and adolescents,
and 84% of adults, operated on for hypospadias (as against 13% and 40%
respectively in the control groups) were conscious of having a penis which
differed in appearance from that of other people. One of the most commonly
reported issues was the post-operative circumcised appearance of the penis (the authors noted that
circumcision is an uncommon practice in the Netherlands).
A
second observation related to the degree of satisfaction with the appearance of
the post-operative penis. Almost 25% of the subjects operated on
for hypospadias (against 5% of the children/adolescents and 12% of the adults in
the control group) were dissatisfied with the appearance of their penis. Their lack of satisfaction was
related to the size and shape of their penis and the position of the urethral meatus.
The authors concluded that these subjects had a 'more negative genital perception' (ibid,
p. 295). In addition, a desire for both functional and aesthetic improvement was
expressed by almost 40% of children/adolescents and 37% of adults who underwent urethroplasties.
A
third observation
concerned comments from other people. Almost 41% of children/adolescents
and 33% of adults operated on for hypospadias reported having received comments
on the appearance of their penis, in public, in places where it was necessary to
undress in front of others (e.g., in the locker room while changing for sports, or in public
toilets).
3.3.2.
Psychosexual
The investigation of
psychosexual development in patients who had undergone operations for hypospadias consisted of semi-structured interviews based on prepared questionnaires. Some of these questions related to the physical and psychological aspects of sexuality; others to the functional and aesthetic results of surgery. Some of the principal results from these two studies (see Mureau et al., 1995a, pp. 1352-1354, and 1995b, pp. 1903-1905) are presented below.
Embarrassment,
combined with a more negative genital perception, can extend to other situations
and cause men to try and conceal their genitals. For example, the researchers discovered that people operated on for hypospadias hid their genitals
in situations where it is conventional to be exposed (e.g., in public showers
or public toilets).
According to these authors, even though the hypospadias-operated men showed certain differences when compared to the control group, such as a more negative genital perception, difficulties in establishing sexually-related contacts, and more frequent concealment of their penis in front of others
[46], their sexual adjustment (e.g., the age of first sexual feelings, contacts or first sexual relations) and their sexual behavior (e.g., number of partners or frequency of sexual activity or masturbation) were considered 'similar' (Mureau et al., 1995a, p. 1354, and 1995b, p. 1905). Only a few differences were observed in sexual function, including problems caused by chordee, a too-short penis, and pain during erection/orgasms. In summary, therefore, the psychosexual development of subjects operated on for hypospadias has been evaluated as relatively 'normal' (Mureau et al., 1995a, 1995b, 1995c).
3.3.3.
Lack of guidance and communication
At the end of the research Mureau et al. (1995a) allowed the adult subjects who had been operated on for hypospadias to express their thoughts and to ask questions. This qualitative data throws some light on the difficulties faced by this group of men.
The first difficulty was their lack of information. Many adult men asked basic questions about hypospadias, mostly about its frequency, how it occurs and its impact on fertility. They wanted to be informed about the precise nature of their condition. A major complaint was related to the lack of guidance and explanations received during treatment; some patients did not even understand exactly why they were being operated upon.
The second problem was the lack of communication surrounding hypospadias and the experience of surgery. According to Mureau et al. (1995a), for some men it was taking part in this research that had, for the first time, allowed them to confront and explore their hypospadias, their surgery and how it had affected their sex life.
A similar level of secrecy was clear among the children and adolescents (Mureau et al., 1995b). More than one third of them (33%) had never told anyone they had had an operation on their penis, for fear of being ridiculed.
3.3.4.
Psychosocial development
The third aspect studied by the Dutch team was related to 'psychosocial development'. According to the authors (Mureau et al., 1997, p. 372), surgical repair for hypospadias was accompanied by a series of stressful events (e.g., repeated hospitalization, parental anxieties, the experience of surgery on the genitals, consciousness of having genitals different from the norm). Thus patients operated upon would be 'at risk' of developing subsequent psychosocial problems.
With
the aim of verifying whether people operated upon for hypospadias
encountered further problems in their psychosocial development, the
researchers used several standardized questionnaires which were also used
with the control groups. One questionnaire related to the genital perception of
the subjects (already recounted); the other questionnaires were based on certain
principal variables such as:
- social inadequacy and self-confidence
[47];-
social anxiety and social competence [48];-
the presence of emotional and behavioral problems [49].The results showed no significant difference in the variables investigated. Only a few significant correlations were found between the genital perception of the subjects and their psychosocial development. These seemed to indicate that 'the genital perception of the subjects operated on for hypospadias was negative, their psychosocial functioning was better' (p. 384). While generally the results of this study indicated that patients operated upon for hypospadias did not have a poorer psychosocial development than the control subjects, some results showed that patients who were more dissatisfied with the appearance of their penis ran a greater risk of developing psychosocial problems later on.
3.3.5.
Implications of the data
In their discussions
(Mureau et al., 1995a, 1995b), the
researchers emphasized the importance
of being able to follow-up patients treated for hypospadias during childhood
into adulthood as standard medical practice. Patients seem little inclined on their own initiative to seek out medical
advice, even if they encounter considerable physical or psychological
difficulty.
Moreover, Mureau et al. (1995c, pp. 295-297) stressed the usefulness of offering professional psychological assistance and/or sexual therapy to patients who had difficulty, after the operation, in accepting the appearance of their penis, especially its size and circumcised appearance. According to the authors, it is important to clearly inform parents and patients that: (i) after surgery the penis will have a circumcised appearance due to the absence of a foreskin, and the glans being permanently exposed; and (ii) that a penis 'circumcised' through hypospadias surgery looks very similar to a penis circumcised for religious or cultural reasons.
It
is also important to tell patients who are worried about the small size of their
penis that surgical operations for hypospadias
do
not aim to increase the size of the penis, and it is important to
reassure them that it is possible to have a satisfactory sex life
with a small penis
[50].
Some psychological support would equally be necessary for more vulnerable patients,
for whom the appearance of their penis could be a risk factor in developing
psychosocial problems later on (Mureau et al., 1997).
4.
Synthesis of the two studies
According to the authors, in contrast to the abundance of literature on the medical side, very little scientific research has been carried out on the possible long-term psychological impact of hypospadias and surgery on the lives of the individuals concerned.
al psychological support
The
studies carried out by the Swedish research team at the beginning of the
1980's referred to several psychological,
psychosocial and psychosexual difficulties that can arise after
hypospadias surgery. The
authors highlighted the fact that the later development of boys operated
on for hypospadias
could be influenced by factors in the environment such as the reaction of
parents and peers.
This
team stressed the importance of
psychological support which could be offered at an early stage to the parents of
children with hypospadias and to the children themselves, in order to avoid
adding a 'psychological handicap' (Berg
et al., 1982, p. 411) to their 'physical handicap'.
The series of studies produced by the Dutch research team also included a series of observations and conclusions concerning the psychological impact of hypospadias and its repercussions on psychosocial and psychosexual development. The authors remind us that, despite constant progress in this field, hypospadias surgery does not give a perfectly normal appearance to the penis (Mureau et al., 1997, 1995c). The majority of patients continued to perceive differences between the appearance of their own penis and that of others: they were more dissatisfied with the appearance of their penis, and had more often received comments about it; they were more self-conscious and embarrassed by the appearance of their genitals, which led to inhibitions in seeking out sexual relationships. They were also more inhibited in undressing in front of other people (e.g. in showers or communal changing rooms).
Mureau et al. (1995c) also included some comments on the importance of being able to offer psychological and/or professional sexual therapeutic support to both parents and the patients.
In
conclusion, both series of studies show that although surgical treatment is
effective in re-establishing varying degrees of functional and aesthetic
normality to the penis, it is still always
possible that emotional difficulties will persist.
4.3.
Another risk factor: the secret of hypospadias
Other factors contribute to a patient's capacity to face up to his hypospadias: as mentioned by the Dutch researchers, more often than not there is a lack of information and explanation from the medical community, for both parents and the patients themselves.
But the emotional consequences of a condition such as hypospadias are equally affected by a lack of discussion within the family. Thirty years ago, Robertson & Walker (1975) reported that that hypospadias was regarded, by the parents and the child, as 'secret information'. The secret, in the context of hypospadias, referred to the existence of a penis which was not completely perfect; this situation was shared neither with friends, nor close relations, nor even in the bosom of the immediate family.
5. A qualitative research project (United States, 1998)
The two series of studies already presented were quantitative in nature. As far as I know, there is no qualitative research published in journals. Nevertheless, I have located a doctoral thesis on the psychology of hypospadias (unpublished). I present here, broadly, why and how this research was carried out, and its results and implications.
5.1.
The subjects investigated
Walker
's (1998) doctoral thesis aimed to thoroughly examine the psychological experience of living with hypospadias as an adult. Being affected personally by hypospadias, Walker knew that this condition and the related surgery had profoundly affected his existence during both childhood and adulthood; this experience of hypospadias was a powerful motivation to explore and so better understand the experience of others in the same situation. The objective of his research was to view the lives of men with hypospadias in a holistic manner (physical, psychological, creative and spiritual), so he could better understand the role which hypospadias had played in their lives. His approach acknowledges the whole person, as well as the deficiency.Walker (1998)
used a qualitative research method. More precisely, this researcher adopted a method known as heuristic, an approach used in social science which requires the participation and involvement of the researcher at the center of the research. The direct experience of the researcher regarding the topic being investigated is one of the principal requirements of the heuristic method (Moustakas, 1990, cited in Walker, 1998). This researcher chose this approach since it allowed him to study the phenomenon of hypospadias while being personally affected by it.5.3. Participants in the research
The
participants
in
Walker's (1998)
research came from a support group for hypospadias which existed on the internet
at the time. The researcher had himself been active in the support group and it
was in this way that he gradually chose 5 participants
affected
by hypospadias
[51].
The participants were aged between 23 and 47 years and came from different
regions of the United States.
The medical characteristics of the participants at birth was varied. They ranged from penoscrotal hypospadias (posterior form), to balano-preputial hypospadias (anterior form). All except one participant, including the author, had experienced surgical repair (some more than once). The operations took place between the ages of 3 and 9.
According to Walker (1998), the manner in which each participant reacted to surgery (from infancy to childhood) as well as to post-operative care from the family and the medical community, was different. However, this researcher was able to observe some common experiences among all the participants. Some of these experiences are presented here (see Walker, 1998, pp.97-100).
5.4.1.
Lack of emotional support
One of the experiences common to all the participants was that they had not been emotionally supported by their families, nor had they benefited from any support from the medical profession. As children, they had been given little or no information, and no opportunities to talk about hypospadias.
5.4.2.
Feeling different and keeping hypospadias
a secret
All the participants said that they felt they were in some way 'different', partly as a result of the lack of information and discussion by the family and medical community. They also felt that they could not talk about this feeling of difference. This led them to hide their thoughts and feelings about this perceived difference, which engendered a kind of 'secret life' about the difference in their penis. This decision to 'hide' their difference intensified as they became adolescent, that is to say when their sexual awareness began to emerge.
5.4.3.
Feelings of embarrassment
A common theme which stands out in the stories of the participants was feeling uncomfortable talking about sexuality. Equally it emerged that they were conscious of an uncertainty and embarrassment regarding their genital difference and their capacity to have normal sexual relations. The participants reported feeling sexually inadequate and anxious during their adolescence. Some of them had been stigmatized by comments from their peers about the appearance of their penis.
5.4.4.
Shame and poor self-esteem
The participants
reported
having become timid and socially introverted during adolescence.
It
was also during this period that the first signs of 'shame' and a
lowering of self-esteem became apparent
[52].
5.4.5.
Anxieties and fear of sexual intimacy
Having
had different emotional and psychological experiences
during adolescence
due to hypospadias,
each
participant
went through, in their own way, a 'crisis' on reaching adulthood. This
crisis related to their sexual, personal and social identity.
Their
feelings of sexual inadequacy which emerged during adolescence,
now
evolved into a fear of sexual intimacy and difficulty in opening up
emotionally and sexually towards their sexual partner. Moreover, they
encountered difficulties in trusting others.
5.4.6. Solitude,
isolation and mistrust
Another experience commonly reported by the participants, as adults, was related to feeling alone and emotionally isolated. This led to their feelings of shame, difference and abnormality being further intensified.
5.4.7.
Feelings of loss and incomplete masculinity
In response to their impression of being deficient with regard to their genitals, the participants felt that as men they were not totally complete. In some cases, they even developed a distorted body image. This affected their self-identity and self-worth.
5.4.8. Personal growth, acceptance
of self and body
Despite difficult experiences, both emotional and psychological, in living with hypospadias, each of the participants described a process of personal recovery and psychological or even spiritual healing. These common experiences of recovery happened after experiencing an extreme level of physical and psychological suffering. This process of recuperation has been described as being a kind of 'understanding of their experience of hypospadias' which permitted them to live with their condition in a more effective way.
Each of the participants described, in his own manner, a way of learning to accept himself and accept his body. This kind of acceptance happened, for example, through: a helper or supporter from a spiritual program, different modes of therapy, or though a creative involvement in art and the use of a man's imagination.
5.4.9. Support from other men with
hypospadias
All the participants expressed an increased need to enter into contact with other men who had hypospadias, with the aims of finding mutual support, coming to a better self-acceptance, having an opportunity to reveal themselves (as having hypospadias), and telling their story to other men in a similar situation.
One
of the topics most often raised by all the participants was the need to make
parents - and the medical community involved with hypospadias - more conscious
of the importance of offering psychological and emotional support at different
developmental stages. This should include psychological support for parents, as
well as for the young patients, but equally for adolescents and adults during
their emotional and sexual development.
5.4.10. Hypospadias as a part of
an overall life experience
One last theme, but no less important, shared by all participants was coming to understand that hypospadias is only a part of their overall experience. All had learned, in different ways, to extend their consciousness of being emotionally isolated with their experience of hypospadias (in which they were negatively focused on their 'problem') so that they finally understood they are part of a wider group of men who have hypospadias. To varying degrees this has enabled them to better accept their condition as being important but still only one part of their overall life experience.
5.5. Implications of the research
Walker's
research has brought out a number of
implications. These are aimed both at professionals in the fields of mental
health and medicine and at the family members of people with hypospadias (Walker, 1998, pp. 215-223)
5.5.1. Implications
for professionals
Many participants
expressed
their appreciation at receiving, at certain moments in their life, professional
support which helped them learn to live with hypospadias as a medical condition.
However, it was not easy for them to find such help, partly because of the lack
of mental health services specializing in this condition. Even in health centers
and hospitals, no service existed to support the psychological problems
associated with hypospadias
[53].
The author recommended that new studies be carried out, and that both medical
and mental health professionals be trained so that
hospital services specializing in the surgical correction of hypospadias have the
possibility of offering an educational and psychological support service, as
well as guidance to patients and their parents, as a central part of the overall
treatment for this condition (Walker, 1998, pp. 215-216).
5.5.2. Implications
for family members
The
participants constantly described feelings of not having been supported by their
family members, and this had an impact on their experience of hypospadias.
According to the author, it was vital to be able to create a climate of
openness, support and communication in the heart of the family (Walker, 1998, p. 121).
In this way, children could feel more free to ask questions and express their
anxieties. Parents should be able to educate, guide and listen actively to their
child. One of the ways to achieve, according to the author, would be to
create a specialized guidance service for parents so that they themselves may
explore their own anxieties, hopes and fears. Finally, as well professional
support, it would be extremely beneficial for parents to be able to access
support groups for men and boys with hypospadias (p.122).
6.
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.
T
hird, 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).
Six
th, 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).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
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