- Synthesis of the two studies
Paucity of literature
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.
4.2. Offering professional 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.
- 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.
5.2. Research method used
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.
5.4. Some results
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).