Sexual Wellbeing and Supportive Care Needs After Cancer in a Multiethnic Asian Setting: A Qualitative Study

The physical and emotional impact of cancer and its treatment may be detrimental to the sexual well-being of patients. We aimed to gain an in-depth insight on the impact of cancer on the sexual wellbeing of cancer patients living in a middle-income setting with limited supportive care services. Twenty focus group discussions, stratified by gender, were conducted among 102 patients with breast, cervical, colorectal, or prostate cancer. Participants were recruited from five hospitals in Klang Valley, Malaysia. Discussions were audio recorded and transcribed verbatim. Thematic analysis was performed using NVivo. Three major themes emerged: loss, adjustments, and unmet supportive care needs. Under the main theme of loss, changes in physical appearances and childbearing abilities negatively impacted participants’ self-confidence and body image, particularly in the females. Changes in quality of sexual activity were commonly raised, which often brought about conflicts and marital strains. Various methods to cope with the changes were described, including reprioritization of sex, using sexual aids, employing other forms of intimacy, and reframing sex as an obligation. Participants further voiced the unmet need for professional counselling services to enable honest communication between patients and their partners, and also sexual healthcare services, which were all deemed as paramount to address their sexual issues. In the low- and middle-income countries, provision of sexual healthcare services including counselling and clinical management of sexual dysfunction should not be overlooked as an important component of supportive cancer care.


Introduction
Sexual wellbeing refers to the individual's experience of the physical, cognitive, emotional and social aspects of relations with oneself and with others, including the freedom to achieve sexual wellbeing [1]. Cancer and its treatment have been shown to adversely impact the sexual functioning and intimate relationships of patients [2,3]. The importance of addressing sexual wellbeing in the cancer care continuum is further illustrated by a systematic review that found that while most supportive care needs significantly decreased three months post-diagnosis, sexual needs tend to increase over time [4].
In Malaysia, a multiethnic, middle-income Asian country with limited supportive cancer care services, open discussions regarding sexual wellbeing between clinicians and patients are scarce due to the sensitive nature of the topic [5,6]. While quantitative studies have reported a high prevalence of sexual dysfunction among Malaysian cancer survivors [7,8], only a handful of qualitative research have examined the sexual health experiences of cancer survivors in the country [6], which tended to be limited to a single cancer site or gender. Understanding the impact of cancer on the sexual wellbeing of patients with different cancers and of both genders is crucial to guide the development of supportive care services that is responsive to the sexual needs of cancer patients in the nation.
Generating evidence to close the knowledge gap maybe the first step towards achieving better sexual health and prevention of sexual dysfunction following cancer in the low-and middle-income settings. To this end, we sought to gain an in-depth insight on the impact of cancer on sexual wellbeing of cancer patients living in a multiethnic, middle-income country with limited supportive cancer care services.

Methods
Data for the present analysis was obtained from a larger study that assessed the overall supportive care needs, including physical, psychological, sexual, social, and financial needs, of multiethnic cancer survivors in Malaysia. Briefly, participants were recruited from five hospitals, comprising a mixture of public, academic and private hospitals in Malaysia. The eligibility criteria were Malaysian women and men diagnosed with either invasive breast, cervical, colorectal, or prostate cancer at least one month prior to the study. Those with recurrent cancers and carcinoma in situ were excluded. Eligible participants were identified by their treating physicians and invited to join a focus group discussion (FGD), which were conducted separately by gender. Written informed consent was obtained from all participants prior to the FGDs. Each FGD comprised four to six participants and was conducted by two trained moderators in either English or Malay language depending on the participants' preference. A total of 10 FGDs were conducted in English and Malay languages respectively. Audio-recordings of the FGDs were transcribed verbatim, anonymized with pseudonyms by the research team. Forward and backward translation were performed for FGDs that were conducted in the Malay language.
In the present analysis, the focus was on the experiences of changes in sexual wellbeing after a cancer diagnosis. We included all study participants regardless of whether they were sexually active at the time of study or otherwise. We were however unable to extract details on the sexual orientation of the study participants as the information was not available from the parent study. The study participants were probed on how did cancer impact how you view yourself as a man or woman, how did cancer impact your sexual or intimate relationships, how did you cope with these changes or impact, and what are some supportive care needs that you needed in terms of sexual health. Follow up questions such as can you elaborate, and can you give a specific example were also asked when appropriate.
The transcripts of each FGD were analyzed thematically. To ensure trustworthiness of coding, all transcripts were analyzed independently at least twice by two different 1 3 researchers. Any disagreements in transcription and coding were resolved through consensus discussion or consultation of a third researcher. Ethical

Results
A total of 102 participants, comprising 64 women and 38 men, across 20 FGDs were included (Table 1). Approximately two-thirds of the female participants were of 40-59 years of age, while male participants were generally older, with two-thirds of them aged 60 years and above. The study included a mix of patients from the major ethnic groups in Malaysia; Malays (43%), Chinese (36%), Indians (17%), other races (4%). A large proportion of the participants was married (78%) while slightly more than half were recruited from public hospitals (56%). Male participants comprised either colorectal (53%) or prostate cancer (47%) survivors while female participants consisted of breast (47%), colorectal (34%) or cervical cancer survivors (19%).
Three main themes emerged from our analysis, namely loss, adjustment, and unmet supportive care needs.

Theme 1: Loss
Three subthemes emerged under the main theme of loss: physical appearances, childbearing, and quality of sexual life ( Table 2).

Physical Appearances
Female participants, particularly women of Malay ethnicity, often described themselves as having "lost their femininity" following mastectomy or hysterectomy. The change in physical appearance particularly affected women with breast cancer who perceived the removal of breast as a "loss of womanly asset", leading to feelings of being "incomplete" and "lacking something". They often recounted feeling inferior, depressed and ashamed following their mastectomy, which severely affected their self-esteem. Apart from removal of the breasts, one participant described experiencing loss of self-confidence due to darkening of her breast skin following radiotherapy. A participant with breast cancer, who was single, also shared her worries of being considered 'unwanted' and 'unmarriageable' due to the loss of her breast.
Compared to their female counterparts, the men appeared to be relatively less affected by the changes in their physical appearances. When probed on the physical changes in terms of masculinity, several male participants with prostate cancer described experiencing enlargement of breasts following endocrine therapy, which they perceived as somewhat embarrassing.

Childbearing
The loss of the ability to conceive a child was most particularly experienced by women with cervical cancer. They described viewing themselves as "incomplete" and "disabled" due to the loss of their uterus. While certain cancer treatments could render patients infertile, it was not brought up by participants with other cancers.

Quality of Sexual Life
While some participants reported no issues with sexual activities following their cancer diagnosis, others described profound changes in the quality of their sex life following cancer diagnosis. The decrease in sexual quality stemmed from reduced sexual desire and sexual dysfunction, leading to abstinence as well as reduction in the frequency of sexual activities. Such patients also reported a lack satisfaction from sexual intercourse following cancer. Many participants, regardless of gender, discussed explicitly that their sexual desire was vastly diminished. While some attributed this to cancer treatment particularly hormone therapy, the majority were unsure of the cause for the loss of libido. Nevertheless, a number of male participants reported that the loss of sexual desire was transient and improved over time. Apart from loss of libido, many participants attributed the lack of sexual activities to other side effect from cancer therapies. Irrespective of cancer type, many participants complained of experiencing pain during sexual intercourse after undergoing cancer therapies. In addition, patients also frequently cited fatigue after cancer treatment as a reason for the decline in the frequency of engaging in sexual activities.
Among women with cervical cancer, other side effects from their cancer treatments, such as vaginal discharge, dryness, itchiness and tightness, were often described as deterrents of sexual intercourse. Moreover, some women with breast cancer recounted experiencing menopausal symptoms such as vaginal dryness and hot flushes following cancer treatment, leading to avoidance of sexual activities. A patient with colon cancer further remarked that the colostomy bag was a hindrance as it restricted his movement and thus reduced his desire for sexual activities.

Theme 2: Readjustments
Participants recounted employing various adjustment methods to cope with the change in their sexual activities and relationships. The subthemes that emerged under this theme were priorities, use of sexual aids and other forms of intimacy, and cultural and religious obligations (Table 3).

Priorities
Many participants highlighted the importance of acceptance regarding the change in their sexual life. Some patients for instance recounted that after being diagnosed with cancer, they tended to prioritize quality of life and the time spent with family as more important whereas issues with libido and sexual intercourse were deemed secondary.

Use of Sexual Aids and Other Forms of Intimacy
A number of participants also pointed out that love and affection may be expressed through other means including physical touch and hugs. A few participants also shared on their experiences of using sexual aids to cope with their sexual issues, such as pumps to facilitate erections or gels to alleviate vaginal dryness. The use of sexual aids, however, were only deemed to be useful up to a certain extent and did not make up to how 'it used to be'.

Cultural and Religious Obligations
A number of female participants from different cultural and religious background shared that they regarded sexual activities as mere obligations toward their partners. This mindset prompted them to have sexual intercourse with their partners even when they may not be up for it. Some women also recounted asking their husbands to remarry as they felt they were not able to provide a satisfactory sex life.

Theme 3: Unmet Supportive Care Needs
Two subthemes were identified under the main theme of unmet supportive care needs, namely, communication, and clinical care (Table 4).

Communication
Open communication with partners was highly mentioned as instrumental by participants in resolving conflicts regarding sexual relationships with their partners. Through honest conversations, they recounted convincing their partners to be more supportive, understanding and more willing to compromise when it came to intimacy issues. Nonetheless, a few cancer patients, more commonly females, voiced out that they had difficulties in communicating with their male partners. These patients expressed anger and frustration, describing their partners as being inconsiderate. Patients who had difficulties in communicating their feelings to their partners were found to be more likely to have arguments and were generally more reluctant to engage in future sexual activities. In these patients, unresolved sexual tensions were cited as a leading cause of relationship conflicts with their intimate partners. One patient further recounted of not knowing the right way to initiate the conversation on sexual relationship with her partner. To this end, some study participants felt that access to professional counselling services may provide them an avenue for engaging in honest conversations with their sexual partners, and be somewhat helpful in resolving their conflicts.

Sexual Healthcare Services
Upon probing, a majority of the study participants meted out their appreciation of the professional sexual advice provided by their treating physicians. The cervical cancer survivors, particularly, mentioned that their doctors tended to encourage sexual activities following completion of radiotherapy/ brachytherapy. Fear was found to be another major concern for couples in initiating sexual activities. This concern was particularly obvious among female patients who were afraid of experiencing pain during sexual intercourse and this is regardless of cancer type involving genital (e.g. cervical cancer) or non-genital organ (e.g. colorectal cancer). Additionally, some participants pointed that sometimes it was their partners who were reluctant to have sex. In particular, a few participants mentioned that their partners were worried that engaging in sexual activities after cancer was not "safe" and may injure the patients or worsen the illness. Some patients also shared about the perceptions held by their partners that cancer is contagious and may spread through sexual activities. In contrast, some partners voiced out that they were fearful of the patients' surgical scars. Many participants thus stressed on the need to have professional sexual education and marriage counselling, with their partners being included in such sessions.
For many, words from the doctors were deemed to be powerful and increased the patients' confidence levels in engaging in sexual activities. Therefore, most cancer patients strongly advocated the need for their clinicians to pre-empt them regarding the potential impact on their sexual lives and what they can do to overcome these issues.

Discussion
Through this qualitative study, we found that cancer and its treatment brought about profound challenges to the sexual wellbeing of cancer survivors living in settings with limited supportive care services. Changes in physical appearances and loss of childbearing ability following administration of cancer surgery and therapies negatively impacted participants' self-confidence and incited psychological distress. The side effects of cancer, including loss of libido, and pain, often led to a decrease in quality of sexual relationships, which subsequently spurred further psychological stress and led to strained relationships with partners. Various adjustments were made to improve their sexual relationships including reprioritization of sex, use of sexual aids, employing other forms of intimacy, or reframing sex as an obligation. While the role of healthcare professionals was stressed as paramount in helping to address sexual wellbeing issues following cancer, this need was deemed as largely unmet. Similar to findings from other settings, the female participants in this study narrated that they felt "incomplete" following the loss of their breasts or uterus [9,10]. This perceived loss of femininity was more common among women of Malay ethnicity and may be linked to the societal expectations of womanhood, in which the breasts and ability to conceive are often deemed as symbols of being a "complete woman" [11]. Conversely, men appeared to be relatively less affected by changes in their physical appearances. From the clinical perspective, while mastectomy and hysterectomy may be life-saving treatments, the socio-psychosexual effects experienced by women on losing the breast and ability to conceive should not be overlooked by healthcare professionals [10,12]. As illustrated from this study, the lowered body image due to the removal of the breasts or uterus affected not only the patients' self-esteem but also their relationship with their intimate partners.
Cancer survivors often report a decline in the quality of their sexual relationships, which are mainly attributed to the side effects of cancer and its treatment. Consistent with many studies, concerns on changes in sexual activities were raised by almost all participants in this study irrespective of cancer type, age, and gender [13,14]. Although it is conceivable that reproductive cancers such as prostate and gynaecological cancers are more likely to be associated with sexual dysfunction due to hormonal imbalances [15,16], our study findings suggest that psychosexual care should not only be limited to a selected subgroup of patients but also extended to all patients with cancers. Although a prior study focusing on women with breast cancer in Malaysia showed that when compared to other survivorship care needs, sexual functioning tended to be rated as a lower priority [17], the study did not preclude the importance of sexual wellbeing. This current study in fact highlights that sexual wellbeing remains an important concern for cancer patients including in those living in multiethnic, multicultural settings.
Several adjustment strategies were adopted by cancer patients to improve their sexual relationships. At the individual level, approaches to ensure sexual well-being included acceptance and adjustment to the new normal such as switching from penetrative sexual intercourse to other avenues like physical touch and hugs, as well as adoption of medical aids. The need for open and honest communication between partners was also frequently brought up. Interestingly, this study found that psychological distress was not only experienced by the cancer patients but also their partners, who were described as "being afraid of hurting them" or "scared" to look at the surgical scars. Alarmingly, there were misconceptions held by the participants' intimate partners including notions that sexual activities are not safe for cancer patients, may worsen cancer and that cancer is contagious and 1 3 may spread through sexual activities. Professional counsellors thus play a crucial role to not only facilitate renegotiation of sexual practices between cancer patients and their partners but also importantly to dispel myths regarding cancer and sex [18]. The adoption of couple-focused sex therapy interventions, adapted to the local socio-cultural beliefs, should also be implemented as they have been shown to be beneficial in fostering communication between couples, managing mismatched expectations, and improving the quality and satisfaction with sexual relationships in both the cancer patients and their partners [19].
In this multiethnic, middle-income country where sexual health is largely left undiscussed, we found a major unmet need for clinicians to counsel patients and their partners on the potential impact of cancer and its treatment on patients' sexual wellbeing. Healthcare professionals play an important role in the provision of reassurance that there is no medical contraindication to sexual activities during and after cancer therapy, and that sex after cancer is safe as long as both parties are ready for it [18,20,21]. Besides prescribing medications and medical aids, referring patients to support groups may also be an effective intervention to provide emotional support to patients with sexual difficulties.
In this conservative settings, it may also be necessary for healthcare professionals to proactively initiate conversations on sexual health with cancer patients and their partners during routine clinical encounters. The mismatch in communication expectations between patients and their clinicians can occur when patients assume that their clinicians would inform them about the sexual side effects associated with cancer and its management, while the clinicians assume that patients would initiate discussions about sexual health if they experienced such issues [2,22]. While oncologists generally agree that sexual counselling is important, many are not able to translate this into routine practice, citing barriers such as insufficient knowledge, lack of training, lack of time and fear of over involvement in patients' personal lives [23]. Training programs for healthcare providers to have open and honest discussions regarding sexual concerns of their patients should be integrated and implemented into routine clinical care [24]. Designing a standardized and validated sexual needs assessment tools may have the potential to aid clinicians in identifying patients with dire sexual health needs, and thus manage their concerns and provide appropriate referrals in a timely and appropriate manner [25].

Study Strengths and Limitations
A major strength of this study is the inclusion of both male and female cancer survivors, as well as participants with diverse types of cancer, compared to previous studies that only included either women or men, or focused solely on a single cancer site. This study also included participants with or without sexual partners to understand different perspectives. It is acknowledged that the presence of others may have hindered some participants from disclosing their personal experiences given the sensitive nature of this topic. However, we found that participants were generally engaged during the FGDs, where many appeared to be relieved to hear from other participants who faced similar issues and were eager to share and learn from each other. It is believed that separation of the FGDs by gender had facilitated more open and honest discussions as the participants were more at ease in terms of sharing their experiences and sensitive information with other counterparts of the same gender.
The male participants in our study were generally of older age; about a quarter were between the age of 40-59 while only four male participants were below the age of 40 years. This could be attributed to the inclusion of male participants with only prostate or colorectal cancer, both of which usually afflicted older men in this setting [26]. Future research should be conducted among younger male cancer patients to validate our study findings. Additionally, studies to understand the perspectives of the partners of people living with cancer may also yield useful information towards the provision sexual health counselling services.

Conclusion
The present study illustrates that sexual wellbeing remains as an important patient-centred outcome and should not be overlooked in planning of supportive cancer care services in the low-and middle-income settings. While the role of healthcare professionals in addressing issues with sexual wellbeing was deemed important by many study participants, there currently appears to be a gap in provision of supportive care that is responsive to their sexual needs. To this end, screening and management of sexual dysfunction, as well as implementation of sexual health counselling services may be able to address the unmet needs. Access to patient support groups and promotion of sexual health awareness are also crucial to help patients cope with the emotional distress arising from sexual health issues.