509409

research-article2013 Anderson et al.

QHRXXX10.1177/1049732313509409Anderson et al.Qualitative Health Research

Article

Experiences of Intimacy Among People With Bladder Exstrophy

Qualitative Health Research 23(12) 1600­–1612 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732313509409 qhr.sagepub.com

Deborah L. Anderson1, Craig D. Murray2, and Ruth Hurrell1

Abstract Previous research investigating the psychosocial and psychosexual impact of living with the complex genitourinary condition bladder exstrophy has been limited in scope and methodological quality. However, the limited evidence suggests that people with bladder exstrophy commonly encounter difficulties that might negatively impact their experiences of intimacy. We conducted an interpretative phenomenological analysis to explore intimacy in 6 participants aged 16 to 56 years. Participants discussed how their parents and later they themselves concealed their health condition. This concealment was associated with feeling safe and protected, yet shameful. Participants also discussed developing intimate knowledge of their own emerging identity while developing intimacy with others, as well as the importance of sharing the experience of bladder exstrophy with others in the development of intimate relationships. We discuss the findings in relation to theoretical issues of concealment, shame, attachment, psychosocial development, intimacy, and chronic illness. Keywords body image; health and well-being; illness and disease, experiences; interpretative phenomenological analysis (IPA); lived experience; relationships; sexuality / sexual health Bladder exstrophy is a congenital health condition involving physiological anomalies of the bladder, pelvis, lower urinary tract, genitalia, and abdominal wall. It belongs to a spectrum of health conditions known as exstrophy-epispadias complex (EEC; Gargollo & Borer, 2007). At birth, the bladder is exposed to the outside of the body, the urethra does not form a cylindrical tube and is open at the top, and the pelvic bones are separated by a wider than normal distance. In men, the penis is short and pulled back toward the abdomen, and in women the clitoris is split. Reported incidence rates for bladder exstrophy range from 2.1 to 4 per 100,000 live births, with a slightly higher incidence in men than in women (Baradaran & Gearhart, 2010). Treatment for this complex health condition commonly requires multiple surgical and medical interventions throughout childhood, adolescence, and adulthood. The aim of these interventions is to preserve renal function and achieve the best possible outcomes with respect to continence, genital reconstruction, and sexual function (Wittmeyer et al., 2010). Choice of continence intervention and management is made case by case and historically has included ureterosigmoidostomy,1 bladder neck repair, mitrofanoff,2 urostomy,3 and intermittent selfcatheterization4 (Baradaran & Gearhart, 2010). Surgical interventions such as penile reconstruction (including

straightening) and vaginoplasty5 combined with vaginal dilatation6 (Baradaran & Gearhart) are used to improve genital appearance and sexual function (the ability to ejaculate and achieve penetrative intercourse). Despite significant advances in surgical procedures, pediatric urologists working with children having bladder exstrophy still confront considerable challenges, and physiological difficulties often remain into adolescence and adulthood (Baradaran & Gearhart, 2010). In a recent review of the psychosocial and psychosexual impact of bladder exstrophy, Baird (2011) concluded that research findings were limited in both scope and quantity. However, the research also suggests that living with bladder exstrophy might negatively impact psychological well-being and subsequently affect the quality of intimate relationships (Baird). Furthermore, findings from a qualitative study reveal that men and women living with 1

Central Manchester University Hospitals NHS Foundation Trust, Manchester, United Kingdom 2 Lancaster University, Lancaster, United Kingdom Corresponding Author: Deborah L. Anderson, Paediatric Psychosocial Service, Harrington Building, Royal Manchester Children’s Hospital, Manchester, M20 3ES, United Kingdom. Email: [email protected]

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1601

Anderson et al. bladder exstrophy recognized the vital role of supportive relationships with parents and partners in their ability to live with bladder exstrophy (Seliner, Gobet, Metzenthin, & Spirig, 2010). In his theoretical model of the stages of psychosocial development, Erik Erikson (1995) suggested that people only establish intimate, reciprocal relationships after they have established their own personal identity. Research on intimacy has identified several important internal factors, including self-disclosure, sexuality, physical interaction, trust, authenticity, and acceptance (Floyd, 1998). Kohlenberg, Kohlenberg, and Tsai (2009) recently described intimacy as “an interpersonal repertoire that involves the disclosure of one’s innermost thoughts or feelings, and results in a sense of connection, attachment and close relationship with another” (p. 131). McAdams (1989) proposed that the desire to experience meaningful intimate human connections is associated with an inherent motivation to gain social support and experience internal psychological growth, and that both of these act as protective factors during times of psychological distress. In particular, experiencing high levels of social support appears to play a significant role in achieving good outcomes in terms of general health and well-being (Reis & Franks, 1994). Prager (1995) linked the absence of intimate relationships to increased mortality, increased stress, and worsening mental and physical health. In some studies, difficulties with appearance and incontinence were found to affect the establishment and maintenance of close friendships and romantic relationships in people with bladder exstrophy. For example, a sample of adolescents with bladder exstrophy commonly perceived their physical appearance, and particularly the appearance of their genitalia, as “not normal” (Wilson, Pistrang, Woodhouse, & Christie, 2007). Difficulties with incontinence also contributed to adult women with bladder exstrophy struggling to relate to other people and feeling “handicapped” (Catti, Paccalin, Rudigoz, & Mouriquand, 2006). Furthermore, Feitz, Van Grunsuen, Froeling, and De Vries (1994) reported that one third of their sample of adults with bladder exstrophy attributed the breakdown of at least one relationship to differences they perceived in their physical appearance. Findings outside the bladder exstrophy literature suggest that a negative appraisal of genital appearance (Nobis, Sanden, & Elofsson, 2007), or the presence of a stoma on the abdomen or a urostomy bag (Black, 2004), can be associated with difficulties in achieving intimacy (Kelly, 1991) and establishing sexual relationships (Nugent, Daniels, Stewart, Patankar, & Johnson, 1999). Roe and May (1999) reported that adult men and women who had incontinence problems because of various health

conditions tended to experience limited levels of intimacy in their romantic relationships. Previous research uncovered close personal friendships in as many as 88% of adolescents and young adults with bladder exstrophy and other EEC conditions (Lee, Reutter, Graber, Fisch, & Noeker, 2005). However, additional findings indicate that it was common for both adolescents (Ebert, Scheuering, Schott, & Roesch, 2005) and adults (Gobet, Weber, Horst, Yamamoto, & Fischer, 2009) with these health conditions to limit the number of relationships they had in which the other person knew about their health condition. Furthermore, it was reported that it was common for these adolescents and adults to actively hide their health condition by avoiding social situations in which they would be expected to expose their bodies, such as using public changing rooms (Ebert et al.; Gobet et al.). Being open with family, friends, and romantic partners about the physical and emotional impact of living with an EEC condition was reported as uncommon for adolescents (Ebert et al., 2005) and adults (Baird, Sanders, Woolfenden, & Gearhart, 2004), despite some adolescents’ reporting “openness” as an important coping strategy (Ebert et al.). Diseth, Bjordal, Schultz, Stange, and Emblem (1998) reported anecdotal evidence that their sample of adolescents with bladder exstrophy and other EEC conditions routinely avoided engaging in social activities, leading to social withdrawal, loneliness, and isolation from their peers. These findings are troubling given that the development and maintenance of friendships during childhood and adolescence have been linked to the ability to achieve intimacy with romantic partners in adulthood (Toscano, 2010). According to Prager (1995), the ultimate expression of intimacy occurs within sexual relationships, where people are assumed to share both emotional and physical intimacy. The majority of studies in which the psychological aspects of sexual relationships for people with bladder exstrophy have been considered have been criticized methodologically (Gargollo & Borer, 2007). These criticisms include failing to use validated, disease-specific questionnaires; using questionnaires or interviews designed or conducted by the authors; and failing to use control groups. As a result, Gargollo and Borer (2007) concluded that the findings present a confusing picture of how difficulties with sexual function might affect the experience of a sexual relationship. They also suggested that factors other than sexual function are relevant to the establishment and maintenance of intimate relationships among people with bladder exstrophy. For example, it was reported that a sample of women with bladder exstrophy identified factors such as the partner’s understanding of their health condition, as well as the experience of support, tenderness,

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1602

Qualitative Health Research 23(12)

and patience from the partner, as more important than sexual interactions in their romantic relationships (Catti et al., 2006). Wilson, Christie, and Woodhouse (2004) reported a relationship between potential difficulties with sexual function and anxiety about future sexual relationships among adolescents with bladder exstrophy. Reiner and Gearhart (2006) reported that children and adolescents with bladder exstrophy in their study met the clinical criteria for at least one anxiety disorder. Starting in puberty, sexual anxiety, in particular, was increasingly prevalent in all their participants. Wilson et al. (2007) presented similar findings from their qualitative study of the psychosocial impact of bladder exstrophy on adolescent men and women. In particular, they reported that these men and women tended to delay sexual relationships because of difficulties with trust and fear of rejection. In summary, previous studies investigating the psychosocial and psychosexual experiences of people with bladder exstrophy have been criticized for their limited scope and poor methodological quality. The limited evidence available suggests that experiences of friendship and romantic relationships can present unique challenges to people with bladder exstrophy when they try to achieve several of the elements considered necessary for the development and maintenance of intimacy. In the current exploratory study, we conducted an in-depth analysis of how people with bladder exstrophy experienced intimacy up to the time of our interviews.

Methods Design We adopted a qualitative design through which data generated from semistructured interviews were analyzed using interpretative phenomenological analysis (IPA). As described by Smith, Flowers, and Larkin (2009), IPA is based on the three philosophical approaches of phenomenology, hermeneutics, and ideography. Phenomenology addresses how individuals make sense of their life experiences through active processes guided by their own unique perspective and meanings. Hermeneutics concerns itself with the process of interpretation and the importance of researchers’ reflecting on their own role in interpreting participants’ experiences. This approach acknowledges that “the researcher is trying to make sense of the participants trying to make sense of their world” (Smith & Osborne, 2003, p. 51). Ideography addresses the importance of how understandings of one’s experiences are unique to the individual. Guided by these philosophical underpinnings, we aimed to develop an understanding of how participants made sense of their

unique experiences of intimacy while sharing the common experience of bladder exstrophy with others.

Procedure Sampling and participants.  A national research ethics service, the research and development department of the National Health Service trust involved in recruiting, and an institutional review board all granted full ethics approval for the study. We gave full consideration to the relevant ethical issues, and we addressed these matters in the protocol. For example, we gave careful consideration to procedures for maintaining the anonymity of participants, all of whom were given full details of how their personal details would be kept secure. We gave each participant a pseudonym and any identifying details were removed from quotes. Furthermore, we made all participants aware of the limits of anonymity that are inherently involved in using verbatim quotes in qualitative research. All of these considerations ensured that participants provided informed consent. Our recruitment procedure generated a suitably homogenous sample (i.e., participants with a set of common characteristics and experiences of interest to the researchers). Specifically, all participants had a diagnosis of bladder exstrophy and were able to discuss intimacy in the English language. We provided potential participants with a detailed information sheet that clarified the expected focus and content of the research interviews. Furthermore, we encouraged participants to ask questions throughout the recruitment and data collection processes. We gave them the opportunity to withdraw from the study before, during, and for a limited time period after the interviews. In this article, we refer to all participants by pseudonyms. We recruited participants in two ways. First, a professional who worked in a health service for people with bladder exstrophy identified people who were eligible to take part in the study, and sent them a recruitment pack including a detailed participant information sheet and an expression-of-interest form. Individuals who wanted to know more about the study completed this form and sent it directly to the first author using a supplied stamped addressed envelope. Second, we contacted four international EEC support groups, using contact details supplied on their Web sites. The administrators from one of these groups responded and agreed to advertise the study in their newsletter, which was emailed to all group members. People then contacted the first author to express an interest in the study and obtain further information. Six people—3 recruited via the specialist health service and 3 via the support group newsletter—expressed an interest in the study before the recruitment deadline. All 6 were selected to participate. Four were from the

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1603

Anderson et al. United Kingdom, 1 from Australia, and 1 from the United States. The mean age of the participants was 32 years, with a range from 16 to 56. Five were women and one was a man. All were White. Two participants were single, 2 were in romantic relationships, and 2 were married. Data collection.  Participants took part in one-to-one interviews. The first author conducted three face-to-face interviews in private venues: one in a room at a community venue, one at the participant’s home, and one in a private room at the health service involved in that participant’s recruitment. She also conducted three interviews from a private location via Internet telephone while participants were in their own homes. She recorded all the interviews using a digital audio recorder and then transcribed them verbatim. The mean length of the interviews was 81 minutes and ranged from 47 to 105 minutes. The first author used an open interview schedule that gave participants ample opportunity to discuss their experiences of intimacy. She asked about three types of current or past relationships during the interviews: (a) relationships with persons with whom the participant felt or had felt intimate, (b) relationships in which the participant had hoped to experience intimacy but did not, and (c) relationships with romantic or sexual partners. She used prompts as needed to facilitate deeper reflection. One main question was, “Can you tell me about someone, currently or in the past, whom you have felt intimate with?” This was typically followed by prompts such as, “What did it mean to be intimate in that relationship?” and “How did that make you feel?”

Analysis IPA was carried out as described by Smith et al. (2009). During the first stage, the first author completed the individual analyses one transcript at a time. In the left margin of the first transcript, she wrote down any impressions of parts of the text that appeared to be of interest or of significance given the aims of the research. This proceeded in a line-by-line manner and included attempts to summarize material, make connections between passages and statements, and make preliminary interpretations. The first author alone considered these, but the second author collaborated with her to identify possible connections or similarities. The first author then clustered iteratively to produce a set of distinct experiences and interpretations. Following completion of this form of annotation for a given transcript, the first author produced précis of identified themes to facilitate phenomenological interpretation of the data. The second author revised these précis to create summaries that both authors found to be clearly worded and supported by the data. Following completion of this process for all transcripts, the first and second

authors together considered all of the themes. Subsequently, they merged, collapsed, and relabeled these individual themes across transcripts to form a new set of superordinate themes with a coherent and meaningful structure. These latter themes represent both the shared and ideographic elements of the data as a whole. We employed several methods to conduct a trustworthy and authentic analysis. Throughout the analysis, we continued to reflect on the interpretative nature of the process to ensure the credibility and good quality of the interpretations and contribute to the rigor of interpretation and theme development. Throughout the data collection and analysis process, the first author kept a reflexive journal to ensure, as far as possible, that any assumptions or interpretations could be bracketed off, thereby reducing the potential impact of individual transcripts on subsequent interviews or analyses. During the later stages of analysis, when the themes were merged across all transcripts, we considered the assumptions and interpretations noted in the reflexive journal in light of the data as a whole. For example, the first author made the following note in her reflexive journal after she had interviewed Megan: “She appeared to frequently ask me if her experiences were similar to those of other participants. She appears to want confirmation that her experience has been the same as other people’s.” The first author considered this note while developing the themes for Megan and again during the final merging of themes across transcripts. This process facilitated the interpretation of all the participants’ experiences, which the first author summarized under a superordinate theme labeled “the role of sharing the full story in establishing intimacy.” We used good-practice guidelines for qualitative research to guide the analysis and subsequent reporting of the data (Elliot, Fischer, & Rennie, 1999). We also adhered to Yardley’s (2008) criteria for ensuring highquality interpretations. We kept the analysis as transparent as possible to demonstrate a clear progression from the analysis of the original meanings assigned to the data to the final superordinate themes. We demonstrate this transparency below by using participants’ own words to illustrate the final narrative summaries.

Results The Conflict of Concealment: Safe Yet Shameful When describing the intimacy in their relationships, participants focused on the role of concealing their bladder exstrophy. This concealment allowed them to feel protected from the possibility that they might experience difficulties when others found out about their condition.

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1604

Qualitative Health Research 23(12)

Lucy described her strategy of concealment as having a “safe place” from which to explore intimacy. All participants discussed difficult experiences during their childhood; as they grew older, these experiences led them to try to protect themselves. One of the main childhood experiences the participants discussed was that of incontinence. Lucy described how her experiences affected how she had been thought of by her peers throughout her time at school. She also described the emotional impact that these experiences had on her: “I was the little girl that wet her pants. You know? It was very damaging.” Participants also recounted experiences of teasing or bullying by their peers. They said this behavior had made them feel “abnormal,” “lonely,” and “isolated.” As adults, the participants understood that their parents and teachers had tried to protect them from the potential distress of these experiences by concealing the visible aspects of their bladder exstrophy from other people. The participants described their lack of understanding of these protective efforts. They noted that during childhood these attempts to conceal had made them question the acceptability of sharing their bodies and their health status with others. Frank discussed how his mother had concealed his bladder exstrophy from others both verbally and visually: “When I was a baby and I had to get changed, she’d send everyone out the room ’cause she didn’t want them to see me like I was.” He went on to explain that this treatment differed from that given his brother and how this difference had made him feel: “With my brother it was fine. It was ’cause I looked different. Although my aunties knew, she still didn’t want them to see me. That was hard to understand: being different.” He then described how his mother’s approach had influenced his own tendency to conceal his body during his childhood and adolescence: And then, of course, when I went to school I was exactly the same as that. I suppose, whether that had any impact on it or not, I don’t know. But I would never get changed in front of anybody or stuff like that.

In line with Frank’s experience, all the other participants described how during adolescence they had taken control of protecting themselves by continuing the concealment approach they had learned from their parents. Despite their descriptions of how the actions of their parents made them feel different from others, the participants still talked about how these parental relationships had provided another safe place from which to explore their feelings. For most participants, it was extremely important to be able to share with their parents the emotional aspects of their lives. Elizabeth described her relationship with her mother as follows: “There needs to be a safe person: a parent, that regardless of whatever you say

or whatever you’re feeling, that is always going to support you. And obviously my mum’s [mother’s] been my safe person.” Participants also discussed how the efforts of their caregivers to manage the symptoms of their bladder exstrophy, and in particular their incontinence, had made it difficult for them to recognize the protective nature of these acts. This, in turn, made them feel the need to be assertive in developing autonomy and control of this aspect of their lives and in achieving the transition to independence. Jane described this as she discussed her relationship with her mother: I think my mum did tell a couple of the teachers, which I wasn’t very happy about. But, um, there’s, “They don’t need to know! I can manage this.” Like, “Just back off!” I remember feeling like, “Back off and leave me alone, ’cause I can do this.” But I felt like I couldn’t. I felt like, obviously, I was her daughter, and my mum wanted to look after me. But she was always doing it. You know? She worried. But I was like, I remember thinking, “Please just leave me alone and let me get on with this.”

All participants discussed the need to gain personal control of the concealment and subsequent disclosure of their health condition. They identified the development of this control as an important transition, not only during adolescence but also throughout their lives. Although Megan became more open with others about her bladder exstrophy later in life, it remained vital for her to retain control of her experience. This is demonstrated by her explanation of why she chose to attend bladder exstrophy conferences alone rather than with her husband or mother (relationships which she herself described as intimate): When I’ve been to all these conferences, I’ve always gone on my own, and people say, “Oh, have you not brought your husband?” Or, you know, “Would you not bring your mother or something?” And I wouldn’t, because it’s something that’s just mine. And although, you know, I’ve shared this intimacy with them, because you know about it and all. It’s part of me that I want to keep closed ’cause it’s just mine. It’s something that I’ve dealt with all my life.

All participants spoke about the importance, while in their safe place of concealment, of feeling comfortable and secure in the decisions they had made about when and with whom to discuss their bladder exstrophy. They felt a strong need to establish what they often described as close relationships before they felt able to open up to the possibilities of what they described as intimate relationships. Getting close to others meant spending time with them, developing shared experiences and a sense of trust. Karen described this in terms of her friendships: “If I got, like, really close to them and, like, they helped me

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1605

Anderson et al. with problems and stuff; I’ll probably tell them ’cause I can trust them.” Developing this initial sense of trust meant that participants could develop confidence that the other person might not reject them if they disclosed their health condition. Indeed, the factor that most influenced whether participants considered their relationships as intimate or just close was whether they had chosen to tell the other person about their bladder exstrophy. Elizabeth described this as needing to “cement my friendships” and have a “really good foundation.” Lucy’s comments suggest that she felt there must be strength, permanence, and reciprocity in her relationships if she was to trust others with knowledge of her condition: I wheedle out the acquaintances and the people, um, that, you know, aren’t really interesting to me. And I keep the ones that are, and that I feel closest to. I think that’s to do with my condition. You know, I want people around me that are going to accept me and, um, going to make me you know, um, going to make me feel good about myself.

Those participants who felt that they had experienced intimate relationships with romantic partners discussed the need to develop intimacy prior to commencing a sexual relationship. Elizabeth described how her relationship with her ex-partner had been built on strong foundations of trust and permanence, which had in turn allowed her to develop the confidence needed to enter into a sexual relationship with him. These considerations caused her to explain how the benefits of this aspect of their relationship (intimacy and closeness) had outweighed the physical pain she might experience: Even though the physical side was painful, and that the intimacy and the closeness that you get from having a physical relationship with someone is, you know, terrific. So I guess what I got out, with the pain in between, outweighed it. If you know what I mean?

The Challenge of Developing Intimacy With the Self Alongside Intimacy With Others Participants recounted experiences of how their relationships with the self and their relationships with others had interacted over time. These interactions contributed to how intimate the relationships with others felt and ultimately how much the participants felt able to understand and accept themselves. Thoughts of uncertainty about personal identity made it difficult for participants to understand how to both be themselves and be in a relationship with others. For example, Jane’s description of her struggle to relate to classmates at school, and her use of both the past and present tenses in her narrative,

demonstrate how these insecurities remained with her into young adulthood: “I didn’t really know how to be with them. I know that sounds really strange, but I don’t [pause], didn’t really know how to be.” This difficulty in being with others appeared to be associated with participants’ fear that others would see them for who they really were. Lucy demonstrated this in her account of how difficult she had found it to verbalize the nature of her bladder exstrophy, both as a child and as an adolescent: The one thing is, I’ve always known that you can’t tell that there’s something different about me. But I feel it. I feel like you can see it. I feel like people can know. I had trouble even saying the word bladder for a number of years ’cause I felt like if I said it people would be like, “Whoa! Why are you talking about your bladder?” Like, like, even talking about it in, like, a science class or something. The word bladder is incredibly difficult for me to say because it is such a private, painful thing for me. And I feel like if I say it people will know that something is up.

Megan described similar conflicts, which she related to her experience of growing up in a family that did not discuss her bladder exstrophy or the emotions associated with it. Her inexperience verbalizing her feelings and the fact that she saw her experience as hidden left her believing she was unable to share her internal world with others: It’s like for anybody that has a hidden disability. Part of you wants to scream out all the time: “Look, you haven’t got a clue what I’m going through!” You know what I mean? But you can’t do that, or I couldn’t do that, ’cause it was hidden.

This difficulty in establishing a sense of self and learning how to communicate and share that with others meant that participants missed out on opportunities to develop relationships with peers or romantic partners. They felt that these opportunities would have given them a chance to compare their experiences, thoughts, and feelings with others. As such, it appears that the negative social comparisons they made with themselves often remained unchallenged. The majority of participants shared a tendency to compare themselves to others in terms of how they had viewed the role of their gender in their romantic and sexual relationships. This, in turn, was related to their perception of the self as a potential sexual partner. Frank described his body as “not a pretty sight, to say the least,” and talked about his belief that during adolescence and young adulthood his potential sexual partners found their sexual experiences with him to be more negative than those they had with other men:

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1606

Qualitative Health Research 23(12)

Well, I just, I just knew it wasn’t. You know what I mean? You just know it’s not like, it’s [pause]. I think her having sex with me would not be the same as having sex with somebody who’s normally built.

This belief led Frank to avoid sexual relationships at that time and to think he was missing out in comparison with his peers: “That part of my life never existed like other lads [young men].” Like Frank, who avoided sexual relationships and felt different from his peers as a result, some participants related experiences of entering sexual relationships to try to change their negative perceptions of their own body and how they believed potential sexual partners would experience a sexual relationship with them. For example, Lucy described her experience with an ex-partner with whom she had chosen to be completely open about her bladder exstrophy. Unfortunately, as a result, she experienced troubling thoughts and feelings that had been echoed back to her in the most painful ways when the relationship ended. Moreover, the ex-partner had used the knowledge of her bladder exstrophy against her: “I hadn’t felt that kind of pain in a long time. And this actually physically hurt. To, like, to have someone just bring up exactly the thing that you have trouble with yourself.” Despite their initial difficulties in establishing and maintaining what they viewed as intimate friendships through which they could share their experiences related to their bladder exstrophy, all participants said they had experienced this quality of friendship at a later point in life. Most described how these relationships had allowed them to share their emotions, understand themselves better, and view themselves more positively. For example, Jane explained how her experience of being open with one of her best friends had helped her challenge some of her most negative thoughts about herself: She won’t take nonsense from me. Like, I tell her exactly how I feel. And if it’s about, uh, “He doesn’t fancy me because I’m horrible! And my scars are horrible!” She’ll be like, “Look!” She’ll, she’ll, sort of put me right on the right track again.

The passage of time was also of great importance to participants, because it allowed them to believe they were ready to experience the full emotional impact of their bladder exstrophy and how it affected their sense of self. For Megan, the experience of self-intimacy came later in life, when she started to meet other people on the Internet with the same health condition she had. She described how she had been able to finally understand bladder exstrophy and be “armed with all this knowledge” about it. This knowledge gave her the strength to accept herself

and carry this acceptance into her relationships with others: “I knew what it was, and other people did too, and that it was okay, ’cause they knew.” The passage of time was also relevant to participants’ experiences of the medical and surgical procedures they had to undergo because of their bladder exstrophy. For example, Lucy described how it had not been possible for her to recognize the existence or nature of her emotional pain while she was still completing her required surgeries. Once she had gotten through them all, she was able to acknowledge her emotional scars: I find for me the easiest thing to deal with is pain, ’cause I sort of know how to deal with it. Um, you just sort of buckle down and you get through it because pain doesn’t last forever. But it’s only after I’ve been through everything and that, I’ve realized that it’s scarred me in more ways than one.

The four oldest participants said that they had incorporated the physical impact of their bladder exstrophy and their experiences of it into their personal identity. They were able to recognize the importance of not hiding their condition in their relationships with others. Elizabeth described this as follows: I’m proud of myself and what I’ve achieved. I think my scars, in a way, are kind of like a part of me and have been through this journey with me. So, um, I think in some ways I’m a bit attached to them [laughter]. Because they’re a part of me and I don’t want to, um, hide them and pretend I’m someone that I’m not.

This acceptance allowed them to expand their sense of who they were beyond their physical condition and to recognize that although their bladder exstrophy was a significant part of their identity, it was only one part. Lucy explained this shift when she described her new attitude about friendships as she grew older: “They’re not friends with my bladder, you know. It’s not one thing. I have a lot of other stuff to offer.”

The Role of Sharing the Full Story in Establishing Intimacy When participants spoke about their important intimate relationships, they noted how valuable it was that the other person in the relationship had also experienced bladder exstrophy or at least knew them while they themselves experienced it. Lucy described this as them knowing “the full story.” Furthermore, participants spoke about various relationships that had reached this level of intimacy because the other person had been through their journey with them. For example, Lucy spoke of how close she had felt (like family) to her ex-boyfriend, who

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1607

Anderson et al. had supported her during hospitalization for one of her major surgeries: He knows a huge part of my life and he actually was present for the episiotomy surgery. He was at the hospital for that day and he made fun of me ’cause of the things I was saying. You know, like my whole family makes light of every situation.

The majority of participants spoke about feeling close to their parents, particularly their mother. Karen described her relationship with her mother as her closest one. Moreover, she believed that her bladder exstrophy had made her relationship with her mother closer than those with her sisters. She noted how things might have been different had she not had her condition: “She’d be, like, with my other two sisters as well. ’Cause she’s mostly with me, like, making sure I’m all right all the time.” Frank described feeling close to his mother because of how his bladder exstrophy and associated medical difficulties had put them both “through hell and back.” He revealed that his only experience of intimacy had been with his wife during the most recent years of their marriage. He described the early years of his marriage as characterized by both external and internal conflict about the frequency and quality of the sexual element of their relationship, and this had acted as a barrier to intimacy. He said that more recently, however, he had come to accept the nature of their sex life, and he felt that his wife had learned to accept and live with this too. In Frank’s mind, this had allowed them to cross the final barrier to achieving intimacy: “At one time I was dead frightened of losing her ’cause of it and, um, I’m not now. Luckily enough. ’Cause I think we have crossed that barrier now, where we are accepting of what is here.” No matter how close or intimate their relationships had become, all the participants described barriers that had prevented them from feeling that others completely understood what it means to live with bladder exstrophy. As Lucy put it, Um, my parents have been enormous supporters. And my sister as well. Um, it’s sort of difficult, ’cause while they understand everything that I’ve been through, they have witnessed everything I’ve been through, [pause] they’ve never [pause], they can’t understand in the same way. You know? It’s, um, we’re definitely close. It’s the closest relationship I feel I have right now in terms of they know everything that I’ve been through. They know how I feel. But they will never understand what it’s like to have actually gone through it.

These difficulties in sharing with others the “full story” and experience of bladder exstrophy were also related to the unpredictability of the condition, and what this could mean in terms of maintaining consistent levels

of intimacy. Elizabeth described her frustration because no matter how intimate she had felt with her ex-boyfriend, she believed he had never truly understood how her fluctuating health could affect her experience of sex: We had problems with sexual intimacy and, um, I think in the end he just couldn’t understand how my condition could affect me the way it does. He couldn’t fathom, you know, why the sex would be associated with that? ’Cause it doesn’t affect me each and every day.

Three participants reflected on how they had established friendships with other people with bladder exstrophy via Internet-based support groups. These friendships provided them with unique experiences of belonging. Lucy described her first experience of this: I went to an exstrophy conference in two thousand and nine, and I was really like [pause]. For the first time, actually being in a room with people that understand what I’d been through on a pain level and on an emotional level. That was magical almost.

These experiences gave participants the opportunity to share thoughts and feelings about their bladder exstrophy with other people who they felt could fully understand them and offer support. Furthermore, they expressed the belief that they would have experienced less isolation had they experienced this sense of belonging while growing up. For Megan, meeting others with the same condition while she was in her 40s translated into meeting people who were “like-minded.” This suggests a comfort and predictability based on shared experience that allowed her to feel truly intimate with others having bladder exstrophy: I talk about my exstrophy family because I’ve got people all over the world who I communicate with now, who, you know, either have the condition or have children with the condition. And you know, they feel like a family separate to my family. They’re another family that I’ve got. And I feel probably, I feel more intimate and close to them when I talk about things related to this condition than anybody.

Discussion The aim of this exploratory study was to gain insight into how participants with bladder exstrophy make sense of their experiences of intimacy. In discussing this topic, participants described their current and past relationships with family, friends, and romantic partners. Theoretical issues related to concealment and the perception of both shame and safety, psychosocial development, and the formation of identity are relevant to the findings of this study. They demonstrate the complexity of participants’

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1608

Qualitative Health Research 23(12)

individual experiences and meanings within the context of their unique intimate interactions. Participants shared recollections of their parents concealing their own bladder exstrophy during their early years, and how they had adopted this strategy themselves in later life. They discussed the protective nature of this concealment and how it had helped them incorporate their physical condition into their sense of self at their own pace. However, they also discussed how they had perceived this concealment when they were children. They noted that the purpose was to protect them from what their parents believed to be the inevitability of other people becoming distressed by their bladder exstrophy and the physical differences associated with it. Participants discussed their sense of internalized shame about their body and their physical condition. This sense mirrored the underlying shame they perceived in their parents because of their concealment. These points appear to be consistent with accounts of how reflected shame from significant caregivers can lead to internalized body shame in children (Gilbert, 2002). In these terms, the act of concealment appears to internalize the belief that the most intimate areas of one’s body should not be shown to others lest it cause distress when they witness the other’s reaction. This process of internalizing shame has been observed in other children with health problems (Hayes, 1995), including those with physical disabilities such as cerebral palsy (Shuttleworth, 2000). Concealment was also related to the avoidance of communication of this internalized shame to others and a hypervigilance of the language and behavior used in interacting with others. This finding supports previous research on how people with concealable stigmas try to manage the impression others have of them so they can cope with their social interactions (Frable, Platt, & Hoey, 1998). Furthermore, the current findings offer insight into the role that internal stigma-related processes might play in the high levels of clinical anxiety found in children and adolescents with bladder exstrophy (Reiner & Gearhart, 2006). Concealment also gave participants a safe and protected position from which to explore close, and eventually intimate, relationships with others. They established this safety net, which is labeled a “secure base” in attachment theory (Bowlby, 1988), in their relationships with significant caregivers. Parental bonds appeared to be particularly secure when the relationships were characterized by sharing both the practical and emotional aspects of bladder exstrophy. However, difficulties with continence during childhood and early adolescence meant that participants’ parents had to be involved in aspects of personal hygiene and toileting for longer than normal. Participants’ accounts suggest that this aspect of their bladder exstrophy made it difficult for them to negotiate what Erik Erikson described as the second stage of

psychosocial development, which he labeled “autonomy vs. shame and doubt” (Erikson, 1995, p. 226). Erikson focused on the importance in this stage of infants developing autonomy from their caregivers and a greater sense of personal control through important activities and processes such as controlling bladder and bowel functions. This move toward autonomy has been reported as difficult for infants with physical disabilities (Beck & Giovanni, 2010) and chronic illnesses (Finnegan, 2004) to negotiate. According to Erikson, successful negotiation of this stage influences later stages of psychosocial development. One of these is the sixth stage, which occurs during adolescence and young adulthood. During this stage, which Erikson (1995) labeled “intimacy vs. isolation” (p. 237), people deal with the conflicts associated with establishing intimate relationships with others. This conflict has also been found to create difficulties for those with chronic illnesses (Greydanus, Rimsza, & Newhouse, 2002). Participants’ reflections led them to understand the protective nature of parental involvement in their toileting while they were young and incontinent; however, they all discussed their need to take control of this aspect of their life as soon as circumstances allowed, as well as the importance of retaining this autonomy in their future relationships. This finding suggests that when addressing intimacy in people with bladder exstrophy, it is important to consider the protective value of autonomy and privacy. Additionally, it is important to consider common social practices surrounding the sharing of explicit details about urination with friends and romantic partners. As such, the concealment strategies that helped participants maintain some privacy in their relationships can be seen to represent adaptive coping strategies that reflect social norms and opportunities to develop a comfortable autonomy. Participants’ accounts suggest that the concealment of emotional aspects of bladder exstrophy represented a significant barrier to intimacy during adolescence and adulthood. Erikson (1995) described the central task of adolescence as the negotiation and resolution of the psychosocial developmental stage he labeled “identity vs. role confusion” (p. 234). This is the stage when individuals strive to develop a sense of personal identity. It is when they experience confusion and insecurity about who they are and how they fit in with their peers and society as a whole. Erikson (1995) also noted that these issues must be resolved if the individual is to establish a strong sense of identity. Our findings suggest that participants encountered difficulties in negotiating this stage. Participants discussed how missed opportunities for social learning, combined with a lack of experience in understanding and communicating about their bladder exstrophy, had impacted the development of their sense of self and, subsequently, their confidence in how to

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1609

Anderson et al. relate to other people. This was particularly salient in how they made sense of the ways in which their body changed during the course of their staged treatments, and the degree to which they allowed their bladder exstrophy to define them. It appears that with increasing age, with positive experiences of acceptance in intimate relationships, and with surgical interventions, participants could begin to make sense of the emotional impact of their condition and incorporate this into their identity. Overall, our findings suggest that the development of self-identity and close or intimate relationships occurred concurrently and reflected an ongoing process for the participants. This finding does not fit with Erikson’s (1982) proposal that the ability to achieve intimacy develops only after personal identity is fully formed. However, it does support findings from those previous studies on the development of intimacy that incorporated a less linear approach. As such, participants’ attempts to reveal rather than conceal aspects of themselves can be viewed within the framework of Reis and Shaver’s (1988) intimacy process model. This model suggests that the ability to be intimate develops during social interactions characterized by revelations of core aspects of the self that hold emotional significance. Although the participants in our study discussed the establishment and existence of close friendships, these were typically characterized as having strong foundations of trust, permanence, and support. This manifested as disclosure of some relevant personal information but retention of information that was most emotionally charged. This finding suggests that the experience of closeness was necessary if participants were to feel safe enough to reveal increasingly detailed aspects of themselves to others. This pattern is consistent with those seen in the romantic relationships of adolescents who have other chronic illnesses, such as diabetes (Seiffge-Krenke, 2000). Despite this need for a slow and progressive development of intimate relationships, shared experience appears to have been particularly important in helping the participants in our study develop these relationships. This was true of relationships in which both the participant and the other person could relate to both the practical and emotional aspects of living with bladder exstrophy, and it was especially true of relationships with people having bladder exstrophy.

Recommendations for Health Services Findings from the current study could be useful for multidisciplinary teams (medics, surgeons, nurses, and psychologists) who work with children and adults with bladder exstrophy, as well as their families. The findings indicate the importance of the psychosocial support provided by these dedicated professionals. This support should be aimed at reducing children’s difficulty coping

with internalized shame, as well as promoting a positive sense of self and intimate, meaningful, interpersonal relationships. Preventive approaches have been identified as especially important for improving the physical health of children and young people (Department of Health, 2009). These approaches also yield long-term financial benefits for health services (Department of Health, 2011). Psychologists, in particular, could offer consultation services to medical and surgical professionals to increase their awareness of systemic and individual issues related to this topic. For example, findings from the current study suggest that surgical and medical teams could benefit from increased awareness of the role that intimacy can have in mediating people’s experiences of sexual pain. Although protecting the person, such mediation could also result in pain being overlooked during brief assessments, as well as beneficial surgical interventions being underutilized. Furthermore, our ideographic findings highlight the importance of individual psychological assessment and formulation. These processes are crucial for identifying unique predisposing and protective factors and for understanding how these influence the type and intensity of support that individuals with bladder exstrophy and their families might need. Findings related to concealment and its association with the development of body shame should ideally be approached in a systemically preventive way. This could be accomplished through routine assessment of parental behavior that might predispose children with bladder exstrophy to experience shame and make it more difficult for them to adjust to the appearance of their body. Such children should be protected from the stigmatization caused by being teased or bullied because of their health condition. Through psychoeducation, parents could receive support in managing these problems in positive ways. This approach should give parents the opportunity to become more aware of their central role in their child’s development of a positive body image. Our findings also suggest that parents should be actively involved in promoting autonomy and a sense of control in as many aspects of their child’s life as possible, given the child’s age. This approach could offset the difficulty that children with bladder exstrophy have in establishing control and autonomy in relation to their toileting. Working with parents to overcome potential psychological barriers to the promotion of increased independence in their children would maximize the effectiveness of these approaches. Professionals should aim to normalize concerns about body image in young people with bladder exstrophy. For example, they could convey how common it is for adolescents and adults to worry about both their bodily and genital self-images (Bramwell & Morland, 2009). Findings from the current study suggest that young people with bladder exstrophy might have limited opportunities

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1610

Qualitative Health Research 23(12)

to compare their thoughts and feelings about their body with those of their peers, and to normalize them. Such psychological support could give these young people opportunities to discuss their concerns in a safe and confidential setting. Our findings also suggest the importance of approaches that allow young people with bladder exstrophy to share their experiences with others having the same condition. These approaches have been found to normalize difficulties and reduce feelings of isolation and shame in young people with health conditions such as bowel disorders (Ekstromer, 2002). Participants’ positive experiences of using the Internet to connect with other people with bladder exstrophy suggest that electronic forms of communication could be of significant value for young people growing up with bladder exstrophy as well as other rare health conditions (Tepper & Owens, 2007). Multidisciplinary professionals can be involved in establishing and normalizing the use of these kinds of forums by the young people under their care. Finally, the importance of shared experience supports approaches that allow young people with bladder exstrophy to increase age-appropriate understanding of their health condition and learn skills for communicating their physical and emotional needs to others. One suggestion is to encourage young people to keep a journal in which to record their life journey with bladder exstrophy. The content could include details of surgical procedures they have undergone, the staff and other young people they meet during their hospital stays, and records of their thoughts and feelings over time. These records could then be shared with important people later in life. Clinicians working with people of all ages who have bladder exstrophy should be aware of the potential for the internalization of stigma-related beliefs and behavior, as well as difficulties with identity development that might not be apparent during routine medical assessments. Psychosocial screening instruments should be adapted for use with this population. Furthermore, access to psychological support should be normalized and promoted as an acceptable way to help people cope with the challenges that bladder exstrophy might bring. Therapeutic approaches that focus on the development of compassion as a way to overcome the negative impact of shame and self-criticism, such as compassion-focused therapy (Gilbert & Procter, 2006), could be used with adults with bladder exstrophy and adapted for children and young people with this condition.

Conclusion In this study, we investigated how 6 participants made sense of intimate relationships while living with bladder exstrophy. The findings highlight concealment as a primary strategy for managing the potential difficulties associated

with this condition. Relationships were described between this strategy and participants’ feeling safe and protected, but also feeling shame about their body. Furthermore, the findings reveal the complex interplay between the development of identity and intimacy and the importance of true intimacy grounded in a shared understanding with the other person about bladder exstrophy. Overall, the findings suggest that establishing intimate relationships presents shared challenges associated with both individual psychological as well as social factors. They provide insight into how people with bladder exstrophy should be supported in their efforts to cope with these challenges throughout life. Acknowledgments We thank members of the Bladder Exstrophy Service at Royal Manchester Children’s Hospital and the Bladder Exstrophy Epispadias Cloacal Exstrophy Hypospadias Australian Community for their assistance with the recruitment of participants.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors received no financial support for the research, authorship, and/or publication of this article.

Notes 1. Diversion of the ureters from the kidneys to the colon. 2. Use of the appendix to form a connection between the bladder and a stoma (artificial opening) on the abdomen. 3. Diversion of the ureters into a stoma on the abdomen so that urine flows freely into an attached urostomy bag. 4. The insertion of a catheter into the urethra or stoma at regular intervals to void urine. 5. Reconstructive surgery to correct deformities of the vaginal canal. 6. The insertion of phallic-shaped appliances of increasing size into the vagina to maintain its width and length.

References Baird, A. D. (2011). Exstrophy in the adolescent and young adult population. Seminars in Pediatric Surgery, 20, 109– 112. doi:10.1053/j.sempedsurg.2010.12.006 Baird, A. D., Sanders, C., Woolfenden, A., & Gearhart, J. P. (2004). Coping with bladder exstrophy: Diverse results from early attempts at functional urinary tract surgery. British Journal of Urology International, 93, 1303–1308. doi:10.1111/j.1464-410X.2004.04865.x Baradaran, N., & Gearhart, J. P. (2010). Bladder exstrophy-epispadias-cloacal exstrophy complex: A contemporary overview. Neoreviews, 11, 705–713. doi:10.1542/neo.11-12-e705

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1611

Anderson et al. Beck, T., & Giovanni, L. (2010). Developmental approach to sexuality and intimacy. Topics in Spinal Cord Injury Rehabilitation, 16, 48–54. doi:10.1310/sci1601-48 Black, P. K. (2004). Psychological, sexual and cultural issues for patients with a stoma. British Journal of Nursing, 13, 692–697. Bowlby, J. (1988). A secure base: Parent-child attachment and healthy human development. New York: Basic Books. Bramwell, R., & Morland, C. (2009). Genital appearance satisfaction in women: The development of a questionnaire and exploration of correlates. Journal of Reproductive and Infant Psychology, 27, 15–27. doi:10.1080/02646830701759793 Catti, M., Paccalin, C., Rudigoz, R. C., & Mouriquand, P. (2006). Quality of life for adult women born with bladder and cloacal exstrophy: A long-term follow up. Journal of Pediatric Urology, 2, 16–22. doi:10.1016/j.jpurol.2005.07.002 Department of Health. (2009). Healthy lives, brighter futures: The strategy for children and young people’s health. London: Author. Department of Health. (2011). Mental health promotion and mental health prevention: The economic case. London: Author. Diseth, T. H., Bjordal, R., Schultz, A., Stange, M., & Emblem, R. (1998). Somatic function, mental health and psychosocial functioning in 22 adolescents with bladder exstrophy and epispadias. Journal of Urology, 159, 1684–1690. doi:10.1097/00005392-199805000-00092 Ebert, A., Scheuering, S., Schott, G., & Roesch, W. H. (2005). Psychosocial and psychosexual development in childhood and adolescence within the exstrophy-epispadias complex. Journal of Urology, 174, 1094–1098. doi:10.1097/01. ju.0000169171.97538.ed Ekstromer, A. (2002). Body shame in children who have bowel disorders. In P. Gilbert & J. Miles (Eds.), Body shame: Conceptualisation, research & treatment (pp. 171–185). New York: Routledge. Elliot, R., Fischer, C. T., & Rennie, D. L. (1999). Evolving guidelines for publications of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215–299. doi:10.1348/014466599162782 Erikson, E. H. (1982). The life cycle completed: A review. New York: Norton. Erikson, E. H. (1995). Childhood and Society. London, UK: Vintage. Feitz, W. F. J., Van Grunsuen, E. J. K. J. E. M, Froeling, F. M. J. A., & De Vries, J. D. M. (1994). Outcome analysis of the psychosexual and socioeconomic development of adult patients born with bladder exstrophy. Journal of Urology, 152, 1417–1419. Finnegan, A. (2004). Sexual health and chronic illness in childhood. Paediatric Nursing, 16, 32–36. Floyd, K. (1998). Intimacy as a research construct. Representative Research in Social Psychology, 22, 28–32. Frable, D. E. S., Platt, L., & Hoey, S. (1998). Concealable stigmas and positive self-perceptions: Feeling better

around similar others. Journal of Personality and Social Psychology, 74, 909–922. doi:10.1037//0022-3514.74.909 Gargollo, P. C., & Borer, J. G. (2007). Contemporary outcomes in bladder exstrophy. Current Opinion in Urology, 17, 272–280. doi:10.1097/MOU.0b013e3281ddb32f Gilbert, P. (2002). Body shame: A biopsychosocial conceptualisation and overview with treatment implications. In P. Gilbert & J. Miles (Eds.), Body shame: Conceptualisation, research & treatment (pp. 3–54). Hove, UK: Brunner Routledge. Gilbert, P., & Procter, S. (2006). Compassionate mind training for people with high shame and self-criticism: Overview and pilot study of a group therapy approach. Clinical Psychology and Psychotherapy, 13, 353–379. doi:10.1002/ cpp.507 Gobet, R., Weber, D., Horst, M., Yamamoto, S., & Fischer, J. (2009). Long-term follow up (37 to 69 years) in patients with bladder exstrophy treated with ureterosigmoidostomy: Psychosocial and psychosexual outcomes. Journal of Urology, 182, 1819–1823. doi:10.1016/j.juro.2009.02.064 Greydanus, D. E., Rimsza, M. E., & Newhouse, P. A. (2002). Adolescent sexuality and disability. Adolescent Medicine, 13, 223–247. Hayes, I. (1995). Sex education in the early years. Health Education, 95, 22–27. doi:10.1108/09654289510075063 Kelly, M. P. (1991). Coping with an ileostomy. Social Science & Medicine, 33, 115–125. doi:10.1016/0277-9536(91)90172-9 Kohlenberg, R. J., Kohlenberg, B., & Tsai, M. (2009). Intimacy. In M. Tsai, R. J. Kohlenberg, J. W. Kanter, B. Kohlenberg, W. C. Follette, & G. M. Callaghan (Eds.), A guide to functional analytic psychotherapy: Awareness, courage, love and behaviourism (pp. 131–144). New York: Springer Science & Business Media. Lee, C., Reutter, H. M., Graber, M. F., Fisch, M., & Noeker, M. (2005). Gender-associated differences in the psychosocial and developmental outcome in patients affected with the bladder exstrophy-epispadias complex. British Journal of Urology International, 97, 349–353. doi:10.1111/j.14645410X.2005.05910.x McAdams, D. P. (1989). Intimacy: The need to be close. New York: Doubleday. Nobis, R., Sanden, I., & Elofsson, K. (2007). Masculinity and urogenital cancer: Sensitive issues in health care. Contemporary Nurse, 24, 79–88. doi:10.5172/ conu.2007.24.1.79 Nugent, K. P., Daniels, P., Stewart, B., Patankar, R., & Johnson, C. D. (1999). Quality of life in stoma patients. Diseases of the Colon and Rectum, 42, 1569–1574. doi:10.1007/ BF02236209 Prager, K. J. (1995). The psychology of intimacy. New York: Guildford. Reiner, W. G., & Gearhart, J. P. (2006). Anxiety disorders in children with epispadias-exstrophy. Pediatric Urology, 68, 172–174. doi:10.1016/j.urology.2006.01.056 Reis, H. T., & Franks, P. (1994). The role of intimacy and social support in health outcomes: Two processes or one? Personal

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

1612

Qualitative Health Research 23(12)

Relationships, 1, 185–197. doi:10.1111/j.14756811.1994. tb00061.x Reis, H. T., & Shaver, P. (1988). Intimacy as an interpersonal process. In S. Duck (Ed.), Handbook of personal relationships (pp. 367–389). Chichester, UK: Wiley. Roe, B., & May, C. (1999). Incontinence and sexuality: Findings from a qualitative perspective. Journal of Advanced Nursing, 30, 573–579. doi:10.1046/j.1365-2648.1999.01126.x Seiffge-Krenke, I. (2000). Diversity in romantic relations of adolescents with varying health status: Links to intimacy in close friendships. Journal of Adolescent Research, 15, 611–636. doi:10.1177/0743558400156001 Seliner, B., Gobet, R., Metzenthin, P., & Spirig, R. (2010). Living with bladder exstrophy—The patients’ perspective. Pflege, 23, 163–172. doi:10.1016/j.jpurol.2009.02.082 Shuttleworth, R. P. (2000). The search for sexual intimacy for men with cerebral palsy. Sexuality and Disability, 18, 263–282. Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage. Smith, J. A., & Osborne, M. (2003). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to methods (pp. 51–80). London: Sage. Tepper, M. S., & Owens, A. F. (2007). Access to pleasure: On-ramp to specific information on disability, illness, and changes throughout the life span. Sexual Health, 4, 313–328. Toscano, S. E. (2010). The foundations for the development of intimacy. Journal of Pediatric Nursing, 25, 81–88. doi:10.1016/j.pedn.2008.09.002

Wilson, C., Christie, D., & Woodhouse, C. R. J. (2004). The ambitions of adolescents born with exstrophy: A structured survey. British Journal of Urology International, 94, 607– 612. doi:10.1111/j.1464-410X.2004.05010.x Wilson, C. J., Pistrang, N., Woodhouse, C. R. J., & Christie, D. (2007). The psychosocial impact of bladder exstrophy in adolescence. Journal of Adolescent Health, 41, 504–508. doi:10.1016/j.jadohealth.2007.05.021 Wittmeyer, V., Aubry, E., Liard-Zmuda, A., Grise, P., Ravasse, P., Ricard, J., . . .Besson, R. (2010). Quality of life in adults with bladder exstrophy-epispadias complex. Journal of Urology, 184, 2389–2394. doi:10.1016/j.juro.2010.08.022 Yardley, L. (2008). Demonstrating validity in qualitative psychology. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (pp. 235–251). London: Sage.

Author Biographies Deborah L. Anderson, DClinPsy, PGCE, BSc (Hons), is a clinical psychologist at Royal Manchester Children’s Hospital, Manchester, United Kingdom. Craig D. Murray, PhD, PGCE, BA (Hons), is the deputy research director/senior lecturer in research methods in the Division of Health Research, Department of Health Research, Lancaster University, Lancaster, United Kingdom. Ruth Hurrell, DClinPsy, BSc (Hons), is a chartered clinical psychologist at Royal Manchester Children’s Hospital, Manchester, United Kingdom.

Downloaded from qhr.sagepub.com at UCSF LIBRARY & CKM on March 9, 2015

Experiences of intimacy among people with bladder exstrophy.

Previous research investigating the psychosocial and psychosexual impact of living with the complex genitourinary condition bladder exstrophy has been...
300KB Sizes 0 Downloads 0 Views