European Journal of Oncology Nursing 19 (2015) 419e426

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Patients' experience of sexuality 1-year after allogeneic Haematopoietic Stem Cell Transplantation Kristina H. Nørskov a, *, Mette Schmidt a, Mary Jarden b a b

Department of Hematology, Bone Marrow Transplantation Unit, Rigshospitalet Copenhagen University Hospital, Copenhagen, Denmark University Hospitals Center for Health Research, Copenhagen University Hospital, Copenhagen, Denmark

a b s t r a c t Keywords: Sexuality Sexual dysfunction Haematopoietic stem cell transplantation Allogeneic Qualitative Interview Biopsychosocial

Purpose: This study explores how patients' experience of sexuality is influenced by physical, psychological and social changes one year after undergoing haematopoietic stem cell transplantation (HSCT). Methods: A qualitative study using semi-structured in-depth interviews. The respondents (n ¼ 9) were recruited from the Department of Haematology, Copenhagen University Hospital, one year after HSCT. The interviews were analysed from a phenomenological-hermeneutic perspective. Results: Bodily changes and symptoms related to chronic graft vs. host disease led to physical limitations or altered body image, which directly or indirectly resulted in sexual dysfunction or problems with intimacy. Symptoms related to chronic GVHD, could explain experiences of sexual dysfunction. Sexual needs were deprioritized as survival became paramount. The experience of changed social roles, both in family life and social network, affected self-image and identity. Finally, communication about sexuality and sexual needs was of significant importance to the current state of their relationship. Conclusion: Physical body alterations, challenges in mastering their new life situation and identity changes affected sexuality and sexual function one year after HSCT. As symptoms resided, sexuality and sex life became more and more prominent in their thoughts and lives. Increased focus is needed on sexuality and sexual dysfunction in the HSCT clinical setting. © 2015 Elsevier Ltd. All rights reserved.

Introduction The issues of sexuality and sexual dysfunction are greatly underrepresented in research, clinical practice and preventive healthcare despite its public health relevance (Park et al., 2009; Stead et al., 2003; Thygesen et al., 2012; Yi and Syrjala, 2009). Evidence suggests that sexual dysfunction is a threat to the joy of life and marital relationships, and can lead to stress and impaired coping ability in chronically ill patients (Christensen et al., 2011b; Derogatis et al., 2007; Derogatis and Burnett, 2008; Flynn et al., 2011; Hordern and Street, 2007; McKee and Schover, 2001). Yet, sexuality is a neglected topic in public health and there is a need to understand the complex relationship between sexuality, health and disease (Christensen et al., 2011a). The World Health Organization

* Corresponding author. Department of Hematology, Bone Marrow Transplantation Unit, Rigshospitalet Copenhagen University Hospital, Blegdamsvej 9, Department 4043, 2100 Copenhagen, Denmark. Tel.: þ45 35 45 88 58; fax: þ45 35 45 73 99. E-mail address: [email protected] (K.H. Nørskov). http://dx.doi.org/10.1016/j.ejon.2014.12.005 1462-3889/© 2015 Elsevier Ltd. All rights reserved.

(WHO) applies a health concept within the bio-psycho-social paradigm in which sexuality is defined as a central aspect of being human throughout life, and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction (WHO, 2014). Additionally, sexuality is found to be influenced by the interaction of biological, psychological, social, economic, political, cultural, legal, historical, religious and spiritual factors (WHO, 2014). The era of allogeneic haematopoietic stem cell transplantation from a donor (HSCT) has been revolutionary in the treatment of haematologic malignancies. Although HSCT has been successfully used to treat various malignant and non-malignant, typically lifethreatening diseases, HSCT is associated with risk of significant physical and psychosocial morbidity (Abou-Mourad et al., 2010). Transplantation-related morbidity is evident throughout the course of HSCT, beginning with pre-transplantation conditioning and extending well into the post-transplantation recovery phase (Socie et al., 1999; Yi and Syrjala, 2009). This aggressive therapeutic modality is associated with numerous short and long-term toxicities that might potentially cause changes in sexuality and sexual

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functioning (Mosher et al., 2009; Yi and Syrjala, 2009). As survival rates for HSCT improve, there is subsequently an increased need for addressing long-term complications, including sexual dysfunction (Abou-Mourad et al., 2010; Bhatia, 2011). Thygesen et al. (2012) identified in a systematic review that patients following HSCT were found to report in varying degrees an altered sex life and several sexual changes, and the aetiology of these changes differed between the sexes (Thygesen et al., 2012). Long-term sexual complications include decreased libido, vaginal alterations, erectile and ejaculatory dysfunctions, premature menopause, dysfunction in sexual hormones, dyspareunia and infertility (Socie et al., 1999; Syrjala et al., 2005; Thygesen et al., 2012; Tierney, 2004). Furthermore 45% males and 33% females following treatment with HSCT experienced a decline in the quality of their sexual life (Molassiotis et al., 1995, 1996). One of the major determinants of sexual dysfunction in allogeneic HSCT patients is chronic graft versus host disease (GVHD) (Syrjala et al., 1998, 2008). GVHD is a complex immune-related inflammatory response, where donor-immunecells (graft) identify the body (host) as foreign and therefore attack its cells and tissue (Mattson, 2007). GVHD can manifest anywhere in the body; however, in the genitals it can lead to vaginal stenosis, scar tissue and adhesions in blood vessels, rash and increased sensitivity in the skin (Lara et al., 2010; Yi and Syrjala, 2009; Zantomio et al., 2006). Furthermore, the primary medical treatment of GHVD is glucocorticoids, which have many known side effects that can lead to physical and psychological changes (Sanders, 2002). A holistic approach to sexual matters is essential since the genesis behind sexual problems is rarely unambiguous (Denman, 2004). Overall, the existing body of knowledge indicates that sexual dysfunction is a long-term complication following HSCT. However, only quantitative studies of sexual dysfunction in patients following HSCT are available (Thygesen et al., 2012). In order to gain a deeper understanding of how people experience their sexuality after treatment, it is necessary to achieve descriptions based on their own understanding, intentions, norms and values. A deeper understanding of experiences following HSCT may reveal important patterns in relation to sexuality and psychosexual issues (Crabtree and Miller, 1999). Furthermore, little is known about sexual changes from a biopsychosocial framework experienced by patients following HSCT. Therefore, this study explores how the patient's experience of sexuality is influenced by physical, psychological and social changes one year after HSCT. Methods The study is a qualitative phenomenological hermeneutic study based on semi-structured interviews. To explore the patient's experience of everyday life, we applied a semi-structured interview guide with open-ended questions (Appendix 1). Interpretation of the interview text is based on Lindseth and Nordberg's phenomenological hermeneutic approach, which is based on the French philosopher Poul Ricoeur's theory of interpretation (Lindseth and Norberg, 2004). Ricoeur stated that interpreting a text is to see something new in what is already taken for granted and to disclose a sort of being-in-the-world (Riceur, 1973). Respondents The sample included nine patients who were approached at their one-year control visit following HSCT at the out-patient department. The study was conducted at Rigshospitalet, Copenhagen University Hospital, at the Department of Haematology, Stem Cell Transplantation Unit. The Unit treated a total of 94 patients in Denmark in the study period (Hovgaard). Inclusion criteria

were patients who were >18 years, eleven to thirteen months post HSCT who provided informed consent and had the ability to understand, speak or read Danish. The exclusion criteria were cognitive problems, relapse, hospital admission and unethical reasons. An opportunistic sample was chosen because of the small number of patients available. 17 patients were assessed for eligibility and 8 were excluded because of relapse (n ¼ 2), ethical reasons (n ¼ 1), hospital admission (n ¼ 1) and gender balance (n ¼ 3). A total of 9 patients were included in the study, and the characteristics of the respondents are summarised in Table 1. Data collection Eligible patients were introduced to the study by the primary investigator and clinical nurse specialist Kristina Thygesen (KT). Respondents had the choice of being interviewed at home or at the hospitals outpatient Stem Cell Transplantation unit. All chose to be interviewed at the hospital, and the interviews were all conducted at the one year control visit following HSCT by KT. The interviews lasted between 22 and 45 min, were digitally recorded and transcribed verbatim by a professional typist. In addition, ‘field notes’ were written immediately after each interview. An initial interview was used as a pilot to assess the respondents' understanding and acceptance of the content and sequence of questions. Themes and questions were not changed after this interview. The interview guide was based on a review of the existing literature and followed with flexibility in the sequence of topics according to the respondents' responses. Ethical issues Each respondent received verbal and written information regarding the purpose of the study, including the right to withdraw from the study and assurance of confidentiality according to the basic principles for research stated in the Helsinki Declaration and Northern Nurses Federation. Written informed consent was obtained before the interview, reminding the respondents of the voluntary nature of the interview. Respondents were considered vulnerable individuals, and due to the sensitivity of the subject of study, they were given written information about the themes in the guide before the interview. The study is registered by the Danish Data Protection Agency and approved by The Joint Ethics Committee of the Capital Region of Denmark (approval nr. H-C-FSP2010-12). Data analysis Data were managed by the qualitative computer software package NVivo version 9. The interpretation of the interview text was carried out by two researchers (KT, MJ) and is based on Lindseth and Nordberg's approach, inspired by Poul Ricoeur's theory of interpretation (Lindseth and Norberg, 2004). The analysis was performed on three levels: a naive reading, structural analyses and a critical analysis and discussion (Lindseth and Norberg, 2004; Riceur, 1973). Naïve reading is the first impression of the interview text as a whole, achieving an immediate understanding of the content. Structural analysis is carried out on three levels: “what is said” (quotes), “what the text speaks about” (meaning), and finally, the text is structured into main themes and subthemes (interpretation). In the critical analysis, the interpretation continues with a discussion of findings in a dialectic pattern between explanation and comprehension achieved by cross analysing and discussing the naïve reading, the validated themes, and external literature relevant for the topics. This “final act of comprehension” is used to

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Table 1 Respondent characteristics. Gender

Age

Marital status

No. of children

Education

Occupational status

Diagnosis

Type of allogeneic HSCT

Chronic GVHD

Treatment with glucocorticoids

Female Male Male Male Female Male Male Female Female

49 49 49 48 29 40 37 52 38

Single Relationship Married Married Relationship Married Married Married Married

0 2 1 2 0 3 2 3 2

Middle-range Middle-range Short Middle-range Short Middle-range Long Middle-range Long

Sick leave Part-time Part-time Sick leave Full-time Sick leave Full-time Sick leave Sick leave

CLL CML CLL ALL ALL AML SAA AML CLL

Myeloablative Myeloablative Non-myeloablative Myeloablative Myeloablative Myeloablative Non-myeloablative Myeloablative Myeloablative

Yes Yes Yes Yes No Yes No Yes No

Yes Yes Yes Yes No Yes No Yes No

Short, 6 yr, i.e. completion of university degree. CLL: chronic lymphocytic leukemia, CML: chronic myeloid leukemia, ALL: acute lymphocytic leukemia, AML: acute myeloid leukemia, SAA: severe aplastic anemia.

argue in favour of one or several suitable interpretations of the text (Lindseth and Norberg, 2004; Riceur, 1973).

independently, it is important to note that they are not mutually exclusive, but most likely interact to form sexuality as a whole.

Findings

Main theme: A changed body

Naive reading

Subtheme: A negative body image The respondents experienced some form of negative bodily change, such as changed hair type (structure and/or length), reduced muscle mass, oedema, vision changes, weight loss/gain, changed pigment/structure in the skin and balance problems. Especially the female respondents no longer felt attractive as a result of these bodily changes.

Sexuality was experienced as important, but was not prioritised. Apprehensive thoughts about the future affected daily life in relation to i.e. survival, relationships, children, employment and finance. The respondents described their desire to return to a ‘normal’ everyday life and become ‘themselves’ again. They were talking with their partner about their sexuality and life together, whether they were sexually active or not. Physical appearance had changed since the time of treatment and they expressed in varying degrees how their appearance affected their identity, selfconfidence and feeling of attractiveness. This in turn, influenced their desire to be sexually active or to begin a new romantic relationship. All respondents expected that their sexuality would return at some point. Structural analysis The structural analysis entailed interpretation of the text in dialectic movements between quotes and the interpreted meaning. The analysis resulted in three main themes and subthemes (Fig. 1). The figure demonstrates that although the themes are described

‘It's held me back (from finding a partner); I feel it when I go out, no one looks at me. After all, you should have eye contact with people, but I can see that I look wrinkled and dark and fat; I haven't felt attractive’. Woman, 49 An altered negative body image made it difficult to meet new people and form intimate relationships. The female respondents felt that it was important to dress up and rediscover their femininity, so that they could feel attractive again. The male respondents were to a lesser degree affected by an altered body image. They felt that the most important thing for them was to know that their partner was still attracted to them. ‘I can't imagine that she is turned on by me in the same way that she used to; it is a question I have never asked her, and I am quite scared of the answer’. Man, 40

A changed body A negative body image Physiological limitations

Mastering one´s own life Challenges to family life Deprioritising sexual needs

The negative bodily changes were difficult to handle, because they were beyond control of the respondents. In contrast, one respondent described how he after being diagnosed, chose to accept that the treatment would change his body; and this being the reason why he didn't feel he had problems with his body image.

Identity and sexuality Changed social roles Reconstructing identity

Fig. 1. Dynamics of identified themes.

Subtheme: Physiological limitations The respondents all experienced some kind of physiological limitation e.g. decreased lung function, reduced muscle capacity, fatigue. Carrying out the most basic everyday tasks required daily planning and prioritising. In this context, they described specific physiological limitations, which affected their sexual performance and the energy needed to be sexually active. As one respondent said: ‘And in that very moment, you believed you were going to die because the air simply … you wanted to finish even though you were fighting for breath; because it is unfair to the other person to stop, so I thought, “If I pass out, then that is just what I will do”,

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because you push yourself to the limit, and then you have to lie still for 10e15 minutes afterwards’. Man, 49 In general, male respondents experienced difficulties having an orgasm and had problems getting and maintaining an erection. The female respondents had problems with dryness in the mucous membrane of the vagina, which led to discomfort and/or painful sexual intercourse. As a result of these problems, some respondents had given up being sexually active. Main theme: Mastering one's own life Subtheme: Challenges to family life The respondents felt that undergoing HSCT had a negative impact on their relationship with their partner. Several had experienced being ill for a longer period prior to HSCT, which meant that some relationships were already fragile. One respondent experienced that the treatment had been so hard on their marriage that they subsequently came close to separating. It has hurt us both deeply, or all four of us. I have two boys, so we're trying to mend things and see what can be saved and how’. Man, 48 Relationship conflicts were often a result of the respondents' difficulties handling the fact that they were unable to fill the role they used to have in their relationship. Communication was of significant importance to the current state of their relationship. One respondent described how the family had been ‘hardened’ by a long period with illness. They coped with the situation by separating responsibilities at home; the patient took care of himself, while his wife took care of the house and children. This strategy, however, had a negative effect on their relationship. ‘Well, it does affect the degree of intimacy, because the family becomes a kind of business; it is like running a company’. Man, 37 For several of the respondents, humour worked as a useful communication tool when the conversation turned to sexuality and sex life. Sexuality was a topic discussed with partners and it meant a lot when their sexual dysfunction and lower level of sexual activity was understood. Uncertainty about the future increased their need for physical intimacy. However in compensation for sexual intimacy, several described having a more platonic relationship. Subtheme: Deprioritising sexual needs Both their illness and present life situation after HSCT were ever most present in their minds, and this focus made survival paramount. This led to different ways of dealing with and prioritising their everyday needs. ‘It (sexuality) returns gradually as you begin to feel better. In the beginning it was a matter of surviving from one day to the next and avoiding various infections; at that point that is what matters. Now it is other things, because now I am able to do different things, so of course there is progress, but it is a long haul’. Woman, 49 As soon as their life situation improved, they expressed interest in resuming a sexual life. Feeling energetic was necessary if

sexuality was to be a part of life, otherwise thoughts about sex and fantasies were neglected. ‘So it was like I was also on sick leave from my sexuality’. Man, 37 Most of the respondents recognised the importance of maintaining their sexuality and sex life in their relationship. However, it required effort to maintain, and expressed that it could easily ‘die out’ if they were not careful. One described that she felt vulnerable and exposed, especially in relation to hygiene, which reduced her desire to initiate sexual intercourse. A few experienced enjoying having sexual intercourse, but fantasies and thoughts of sex had disappeared. Sex life had become more focused, and several described how they tried to be sexually active for their partner's sake. However, once symptoms began to reside, sexuality and sex life also became more and more prominent in their thoughts and lives. The majority of the respondents recognised the importance of having a sex life. Main theme: Identity and sexuality Subtheme: Changed social roles It was important for the respondents to be able to participate in activities that they identified with and that were a part of their lives prior to the HSCT, e.g. employment, social network and family life. Several felt isolated and lacked a reason to get out of bed. Work was described as a social role they identified with and wanted to regain because it added substance and quality to their everyday life. Returning to earlier social roles was not only an important goal, it was also a motivating factor. ‘I've placed a stick with a carrot attached to it with the words “work” 10 centimetres in front of me. I've been trying to catch it, and it is getting closer and closer. It's motivate my positivity, and that carrot has been 50 per cent of my survival in this process'. Man, 49 Physical limitations including fatigue, made it difficult for several of the respondents to carry out their usual social roles. Changed social roles affected the relationship with their partner and their sex life. Subtheme: Reconstructing identity The body's appearance affected how the respondents perceived themselves. Since appearance is part of one's identity, respondents experienced an altered body image as a loss. They experienced a discrepancy between what they felt and what they saw in the mirror or in photos. It was difficult being confronted with this change. ‘I almost started to cry just looking at the Christmas photos. It's one thing how you feel and another is, what you see in the mirror; you just look different’. Woman, 38 Therefore, it was important for several of the respondents to reevaluate their appearance from before the treatment. However, a few described having accepted that their appearance had changed. ‘I also think about what my children say e when do we get our old mum back? e and of course, they won't because that is not me anymore’. Woman, 52

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A few had difficulties forming intimate relations due to their appearance. They described the search for their ‘true selves’ and their ‘own life’. One respondent talked about having had a life ‘without roots’, which had been torn from its context. She therefore experienced that it was difficult ‘to find herself again’. Several had experienced psychological changes following the treatment, which had created problems in the relationship with their partner. It affected their identity as a couple, not being able to share doing the same activities as before. Uncertainty about the future made it difficult to rediscover their old identity or create a new one. ‘It's not what I want for the future (early retirement); I want to do something different. I can't make the decision, because I don't know what will happen or how long this will continue. It is a dilemma that can keep me up at night’. Woman, 52 Undergoing a HSCT was experienced as being much harder than expected, and several had not been prepared for this. The treatment trajectory changed their life and identity fundamentally. ‘She (the doctor) told me many times that it will never be the same again, but it can be almost as good. At first I didn't understand what she meant, because I was positive that everything could go back to what it was before, but it won't’. Man, 48 Accepting that things would never be the same again was for some, a difficult process.

Discussion of findings This study explores how patients' experience of sexuality is influenced by physical, psychological and social changes one year after undergoing hematopoietic stem cell transplantation (HSCT). The three main themes (and subthemes) identified as impacting the experience of sexuality; were a changed body (negative body image and physiological limitations), mastering one's own life (challenges to family life and deprioritising sexual needs) and identity and sexuality (changed social roles and reconstructing identity). Furthermore, the respondents experienced that pressing matters as avoiding infections, keeping family together and survival placed sexual concerns lower in priority. Physiological changes and energy levels were described as reasons that affected sexual performance. More than half of the respondents experienced physiological symptoms related to chronic GVHD, affecting their sexual functioning. However, there is contradicting evidence on the association between sexual dysfunction and GVHD. Yet, the percent of patients who experience sexual dysfunction is higher in those with GVHD suggesting that GVHD increases sexual dissatisfaction (Thygesen et al., 2012). Illness is often experienced as a stressful situation, resulting in lack of energy and this places, patients at higher risk of experiencing a neglected sex life or one that stops completely (Schover, 1997). This can explain why several of the respondents in this study experienced that their sexuality and sex life were given lower priority. Surviving and maintaining a ‘normal’ everyday life was their main priority. However, they believed that once these aspects of their life were more stable, sexuality would become more important again. The study's respondents stressed the importance of a wellfunctioning sex life. Other studies have described significant correlations between reduced sexual activity and poor emotional function among patients following HSCT (McKee and Schover,

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2001; Thygesen et al., 2012; Watson et al., 1999; White and Heath, 2002; Yi and Syrjala, 2009). Yet evidence suggest that sexuality is part of an individual's identity and quality of life, and sexual contact and intimacy can reduce emotional stress and improve the psychosocial reaction to illness and complications following treatment (Hordern and Currow, 2003; Wimberly et al., 2005). Therefore, patients following treatment with HSCT may potentially be able to improve their quality of life, as well as emotional reactions and psychosocial conditions by resuming sexual contact and intimacy with their partner. However, this requires conversations between patient and health professional about sexual well-being in order to identify sexual dysfunctions. Many health professionals equate sexuality only with sexual intercourse, which is a barrier to successful communication, as human sexuality is more than sexual function. It is an ever changing, lived experience affecting the manner in which we view ourselves and our bodies (King, 2012; Stead et al., 2003). Consistent with other studies of sexual function following HSCT and other cancer treatments, respondents experienced diverse physiological changes that affected their body image and their feeling of being sexually attractive (Pelusi, 2006; Tierney, 2004; Yi and Syrjala, 2009). According to Cash and Pruzinsky (2002), a person's sexual function is a complex interplay of thoughts, feelings, physical processes and behaviour. Body image involves the person's self-evaluation of the feelings of being attractive, desirable and comfortable with one's own body, which can affect the sexual experience (Cash and Pruzinsky, 2002). Respondents in our study experienced that the bodily changes affected their feeling of attractiveness and their wish to enter into intimate relations with their partner. The disease and its treatments may cause them to doubt their humanness and passion for living; at the same time, their body image and their ability to express themselves sexually may become altered. Consequently, closeness, sharing, and other aspects of sexual expression may be avoided or neglected at a time in life when these experiences can be most beneficial (Cash and Pruzinsky, 2002; McKee and Schover, 2001; Woods, 1975). This however, underscores the necessity of a systematic approach for clinicians as they assess a patient's understanding of sexuality and body image and the potential effects of the disease and treatment, as they validate feelings related to these changes and personal losses. According to Schover (1997) the roles are often reversed when a family is struck by illness, and the patient who may once have been the caregiver, is now the one in need (Schover, 1997). In our study, the time following HSCT had been hard on the partnership and family, and several respondents experienced changes in the roles of the family. This is consistent with Yi and Syrjala (2009), who describes how role changes caused by the patient's focus on survival and need for the partner to take on the role of the caregiver can prevent their sex life from returning (Yi and Syrjala, 2009). The changed roles can affect sexuality and the relationship; therefore, open and respectful communication is often one of the best approaches to make the relationship and family work again (Hordern and Street, 2007; Park et al., 2009) In our study, respondents attached great importance to talking to their partner about these changes, and humour was used as a communication tool in conversations about their sexuality and sex life. This is comparable with the findings of Flynn et al. (Flynn et al., 2011), who found that cancer patients experienced a great need to talk to their partner about: fear of touching or causing pain, sexual desire, sexual appearance and mutual understanding of sexual changes. It is therefore of great importance that patients following treatment are informed about the possible changed roles and how it can affect sexuality and the partnership, and finally encourage them to talk with their partner about these changes.

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In our study, the BPS changes affected self-image and the identity of the respondents. The treatment had resulted in different processes of change or loss, primarily in relation to changed social roles and body image, which was difficult for them to be confronted with. The changed social roles, especially the respondents' affiliation to the labour market, were of great importance to their identity and everyday quality of life. Social identity includes structures such as family and work (Kelleher and Leavey, 2004). This can explain why several experienced the changed social roles as a loss, and they had difficulties adjusting to the new role structures. Furthermore, some respondents in our study did not feel like themselves when they looked in the mirror, and they expressed a great need to reevaluate their body's physical appearance. Kelleher and Leavey (2004) state that the body's physical appearance is part of the way people see themselves and is of great importance to identity, and a reconstruction of physical appearance can potentially reduce the impact on personal identity (Kelleher and Leavey, 2004). Regardless, the course of treatment for cancer in all its phases is characterised by potential processes of change and loss of both a physical, psychological, social and spiritual nature (Kelleher and Leavey, 2004). Moreover, it can affect the patient and the entire family's integrity and to a great extent invalidate the order of everyday life (Kelleher and Leavey, 2004). The HSCT trajectory has a fundamental impact on daily life, which for a longer period is removed from its context, and that requires a re-establishment of stability and meaning in life. The results indicate that changes to the individual's physiological, psychological and social identity continue to affect the person's sexuality and sex life one year after HSCT. Methodological discussion The semi-structured interview was a useful method, as it enabled the respondents to talk in depth about their experiences with regard to the purpose of the study. A more strategic selection strategy may have provided a more nuanced picture; however, this was not possible due to the small number of patients available. We reached saturation after the ninth interview, as a clear picture of the patients' experiences regarding sexuality following HSCT was evident. Several circumstances may have affected the interviewees' responses, e.g. whether they were having a good/bad day, had received good/bad news from the doctor or were having personal problems in their private lives. Trustworthiness and credibility were strengthened by engaging two researchers in the analysis process, by providing an audit trail (NVIVO) and by keeping a project log. The results can be transferred to other patients who have undergone allogeneic stem cell transplantation, and the identified themes can to some extent, be related to what it means to live with cancer, which increases the study's transferability. All interviews were rich in information including knowledge that were not previously known to us, which, strengthens the conformability of the results. Implications for practice and research Interventions focussing on sexual function in HSCT survivors should address the individuals' needs. While many treatment options are available, the patients individual needs must be identified through initiation of conversations regarding sexual dysfunction in the medical setting. In clinical work and therapeutic interventions all three domains in the BPS model should be included in the elucidation of sexual dysfunction in order to register the domains where therapeutic support is needed whether it is biological (medicine, surgery), physiological (sex therapist, psychologist) and/ or social (social advisor). These conversations can help normalize

concerns for patients, debunk myths, provide a basis for brief e for a referral and it is imperative counselling or serve as an entre that these conversations become an integral part of cancer care (Yi and Syrjala, 2009). The three domains: biological, psychological and social, all contribute to human sexuality, and sexuality must be understood as dialectical and dynamic interactions of these dimensions. There is lack of evidence on whether a combination of education, hormonal evaluation, hormone therapy, behaviour strategies and couples therapy can reduce the sexual dysfunction in this group of patients. As patients experience their illness as a total event, it is therefore important that researchers are able to integrate these domains in future intervention studies. Moreover, future studies are needed to explain the reversibility of these BPS changes, as well as the patients' sexual dysfunction due to lack of existing evidence on this specific topic. Sexual function is an important aspect of life and should be placed on par with discussions of the disease, its treatment, and other symptoms or complications by health professionals. Linking sexuality with health, and discussing sexual issues, emphasizes the importance of maintaining normal activity and relationships during treatment and recovery (Golanty and Edlin, 2012; King, 2012). Conclusion Physical body alterations, challenges in mastering the new life situation and identity changes affected sexuality and sexual function one year after HSCT. Bodily changes resulted in a negative body image, which affected feelings of being sexually attractive. Furthermore, bodily and physiological changes led to physical limitations, which directly or indirectly resulted in sexual dysfunction. Symptoms related to chronic GVHD, could explain experiences of sexual dysfunction. Sexual needs were deprioritized as the issue of survival became paramount. However, as treatmentrelated symptoms and complications resided, prioritisation of needs also shifted and sexuality then became gradually more important. The experience of changed social roles, in family life and social network, affected self-image and identity. Redefining body image and/or adapting to the many changes were important strategies that enabled the respondents to feel ‘whole’ again. Finally, communication about sexuality and sexual needs was of importance to the current state of their relationship. This study informs clinicians on how patients' experience their sexuality and sexual function one year after HSCT. Conflicts of interest This material is original research, has not been previously published and has not been submitted for publication elsewhere while under consideration. “The authors have no conflicts of interest to disclose.” Funding This research was supported by grants from the Novo Nordisk Fond. Acknowledgements The authors would like to thank the patients from the Stem Cell Transplantation Unit at Rigshospitalet in Copenhagen who participated in this study, for sharing their thoughts and experiences about their sexuality after treatment with HSCT.

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Appendix 1. Interview guide. Research question

Interview questions

Clarifying questions

How has body image and sexuality been affected one year after HSCT? How does body image affect HSCT recipients' sex life one year after HSCT?

How has HSCT affected how you view yourself? How has the way you see yourself influenced your sex life and relationship? To what extent has it affected your feeling of attractiveness/sexiness? How do you think your partner/others view you?

How physical changes are experienced one year after HSCT, and how do these changes affect sexuality and sex life?

To what extent have bodily and physical changes had an impact on your sexuality? Have bodily and physical changes had an impact on whether you could have an active sex life and how? Have you been able to talk with your partner about how the bodily changes have affected your life together?

How does emotional well-being affect sexuality one year after HSCT?

How does your mood affect feelings of desire? How do you think that your mood affects your partner's desire? Are there any special concerns that may affect your desire? Has your everyday life changed following HSCT and how? What impact does it have on your relationship? Do you find that you have the same role in relation to your partner as before HSCT? Do you experience changes in other social contexts such as working? If you experience changes in your social roles, does it affect your sexuality?

If no different: explain why there is no difference e what have you done to maintain your self-image? Do you think it is different from previously? Have you and your partner been able to talk about the changed perception you have of yourself? What does ‘sexy’ mean to you and how do you differ from this? Do you experience your body as the same as from before HSCT? Men: problems with erection, ejaculation, problems with the foreskin of the penis? Women: dry mucosa, stenosis, adhesion, bleeding? Do you have an active sex life without your partner? If no spouse; do you have an active sex life e.g. masturbate/fantasize? How has your mood and your desire been since HSCT?

To what extent has HSCT had an impact on social roles and how does it affect sexual life?

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