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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.