Managing sexual dysfunction for women with breast cancer: the perspective of healthcare providers in North East Malaysia

Management of female sexual dysfunction (FSD) is vital for women with breast cancer due to the devastating consequences, which include marital disharmony and reduced quality of life. We explore healthcare providers’ (HCPs) perceptions and experiences in managing FSD for women living with breast cancer using a phenomenological approach. This qualitative study was conducted using a face-to-face interview method with HCPs from two tertiary hospitals in North East Malaysia. The interviews were recorded, transcribed verbatim, and transferred to NVivo ® for data management. The transcriptions were analyzed using thematic analysis. Three key barriers were identified through the thematic analysis: a scarcity of related knowledge; the influence of socio-cultural ideas about sex; and the specialty-centric nature of the healthcare system. Most HCPs interviewed had a very narrow understanding of sexuality, were unfamiliar with the meaning of FSD, and felt their training on sexual health issues to be very limited. They viewed talking about sex to be embarrassing to both parties that are both to HCPs and patients and was therefore not a priority. They focused more on their specialty hence limited the time to discuss sexual health and FSD with their patients. Therefore, interventions to empower the knowledge, break the socio-cultural barriers, and improve the clinic settings are crucial for HCPs in managing FSD confidently.


Introduction
Sexual health in cancer patients is an indicator of the quality of life but it is infrequently assessed by the healthcare providers (HCPs) and should be evaluated at each clinic visit [1]. A decline in sexual function among breast cancer patients is prevalent worldwide [2]. Norley et al. found that 90% of Malaysian women with breast cancer experienced female sexual dysfunction (FSD) [3]. FSD refers to the disturbance in any phases of women's sexual response that leads to three disorders, namely female sexual arousal/ interest disorder, female orgasmic disorder, and genito-pelvic pain or penetration disorder [4]. Boswell et al. contended that mastectomy, radiotherapy, and chemotherapy were significant contributors to arousal, desire, and orgasmic difficulties as well as lower body image scores, which in turn lead to sexual dysfunction [5]. Unfortunately, only fewer than half of these women received treatment for FSD [5].
Management of FSD is vital for women with breast cancer because of its devastating consequences, which include marital disharmony and reduced quality of life [6]. HCPs in breast cancer units should have basic knowledge about sexual health issues; they should be able to identify any changes in sexual function, discuss problems, and address the need for sexual counseling or provide referrals [1]. Unfortunately, most of these issues are not recognized and are thus undertreated [7,8]. Canzona et al. conducted a qualitative study in 2018 among 36 oncology, gynecology, internal medicine, and family medicine professionals [9]. They found that HCPs' decisions to initiate sexual health discussions are often based on erroneous assumptions and practical constraints [9].
In this paper, we explore HCPs' perceptions and experiences of sexuality and sexual dysfunction in managing women living with breast cancer using the Health Belief Model (HBM) and the phenomenological approach. The HBM model was adopted to understand the reasons for the HCPs' difficulties in this area. The model was theorized by social psychologists Rosenstock et al. in 1950 to assess individuals' beliefs about disease and their choices regarding strategies to decrease its occurrence [10]. In this theoretical model, four perceptions play an important role: perceived seriousness, perceived susceptibility, perceived benefit, and perceived behavior. Each of these perceptions, whether individually or in combination, can be used to explain the patients' and HCPs' health behaviors [11,12]. Rosenstock et al. expanded the model by adding cues to action, motivating factors, and self-efficacy [13]. Culture, education level, past experiences, and skills are also included. Self-efficacy refers to individuals' belief in their ability to accomplish a task [14]. Self-efficacy was added to the original four perceptions in the HBM (Fig. 1). Individuals who believe that a new behavior is useful (perceived benefit) but do not think themselves capable of successfully adopting it (perceived barrier) are not likely to attempt it [15]. The aim of this study to explore perceptions and experiences from HCPs in managing sexual dysfunction among breast cancer women in North East Malaysia.

Method
We adopted a qualitative design using the phenomenological approach for this study to understand the meanings and interpretations that Malay HCPs give to their behaviors within their cultural, social, and religious context [16]. This type of approach offers an opportunity to gain multifaceted, in-depth insight into participants' working experiences related to their way of discovering FSD and sexual health issues among women with breast cancer, how they converse with them and how they offer treatment [17]. The dimensions of these experiences may also reflect beliefs, attitudes, and behaviors that are difficult to measure quantitatively [18].
Healthcare providers who work at two tertiary hospitals in North East Malaysia were purposively selected from hospital database lists. The participants had at least 1 year of experience in managing women with breast cancer. They were invited to participate via email. The number of participants in this study was determined by the saturation of data, whereby recruiting was stopped when little new data emerged [19].
In-depth interviews were conducted by the main author in Malay and were guided by a semi-structured questionnaire after obtaining the participants' consent to take part in the study. A pilot study was conducted on three HCPs with an experienced researcher. Before starting the interview session, a brief demographic form was provided for the interviewees to fill in. It included age, gender, duration of practice, area of practice, subspecialties, and details of any training in women's sexual health, particularly FSD. The interview sessions were conducted mainly in a vacant room at the clinic and each interview lasted around 1 h and was audiotaped.
The interviews were transcribed verbatim before being transferred into the NVivo (Qualitative Research Computer Analysis Package) software. The transcriptions were analyzed using thematic analysis. The data were familiarized through reading participants' transcriptions multiple times until meaning was derived from each paragraph. Analysis began when three researchers (SBC, MMZ, and NHZ) read the transcripts multiple times to obtain a feel of the HCPs' views and experiences. The initial codes were inserted, and axial codes were created independently. A discussion was done with the fourth researcher (RDM) to finalize the codes to be used for the whole analysis. The magnitude, interaction of codes, and conceptual thoughts that were relevant for this study were highlighted. The codes that reflect HCPs' words and researchers' interpretation were clustered to develop sub-theme. We revised interrelated and connected emergent sub-themes and grouped them under the main themes [20].
To certify rigors and trustworthiness, a meticulous discussion was conducted to ensure the themes used fitted with existing codes. A thorough discussion among all researchers (in which three of them experts in the qualitative study, RDM, LWY, and PL) has been made to come out with an agreement on the main themes. All researchers agreed on the final themes and sub-themes. The member checking method was applied to ensure the credibility of the codes and themes presented. The interview transcripts and emerging themes were emailed back to participants for comments and confirmation by email to ensure "true" meanings were maintained [21]. Those who did not reply were contacted by phone to discuss matters of potential disagreement. All the HCPs agreed with the theme provided.

Results
Fifteen HCPs include six staff nurses, four medical officers, three specialists, and two counselors with a mean of 8.5 years of experience in managing breast cancer patients were involved in this study. The sociodemographic information of the participants interviewed is presented in Table 1. The job description of healthcare providers is depicted in Table 2. Three main issues were identified from HCPs regarding handling sexual dysfunction: a scarcity of knowledge, socio-cultural influence, and specialty-centric barriers ( Table 3).

Scarcity of knowledge
When asked about the meaning of sexuality, familiarity, and training on FSD, views were mixed into exposed HCPs and lack-of-exposure HCPs. The lack-of-exposure HCPs reported they have a narrow meaning of sexuality, unfamiliar with FSD, and lack of training during undergraduate or postgraduate studies. Lack of understanding of sexuality and limited knowledge about FSD have led HCPs to stay reticent about sexual health even though they had the opportunity to dig on sexual histories or screen for FSD in breast cancer women. The exposed HCP has a broader knowledge of sexuality.

Narrow meaning of sexuality
The lack-of-exposure HCPs described the meaning of sexuality as purely sexual intercourse. One viewed sexuality as body image or body ideals for both genders, male and female: Sexuality…if we talk about sexuality, I imagine it as the general appearance of the individual according to their gender, men and women respectively. (Dr. H, oncology medical officer, 4 years of experience) Meanwhile, Dr. N, the exposed HCP, felt that sexuality should be broader in meaning, involving the emotions that couples experience together, their ability to perform gender roles, and obligations in the relationship: The meaning of sexuality is extensive, it is not focused on sexual intercourse per se, but more on the husband and wife relationship that results in marital happi-ness…also the image of the woman, whether she feels herself to be complete or incomplete. (Dr. N, surgeon, 11 years of experience) The oncology and surgery staff nurses take care of cancer patients on chemotherapy, pre and post-operative procedures and advise patients appropriately Counselor The oncology counselors counsel patients on mental, emotional, and relationship issues. They advise on coping strategies or refer patients to the psychiatrist for mental illness and refer patients to social welfare for financial problems Medical officer The oncology medical officers assess patients' history, perform a physical examination, make a diagnosis, and perform simple procedures and management. They refer patients to specialists for further interventions Specialist The breast surgeons and a liaison psychiatrist were the qualified senior clinicians that fully competent in managing a higher level of patient's care in their specialty

Unfamiliarity with FSD
Most HCPs remarked that their lack of exposure to FSD was due to unfamiliarity with the disorder and treatment because it was not covered in their training.
If they develop low self-esteem due to their body image, we can refer them to a plastic surgeon for reconstructive surgery or an implant…But I am not sure about the treatments for FSD. (Mrs. K, oncology staff nurse, 8 years of experience) Dr. I received complaints from a few patients regarding vaginal dryness but not sure how to treat it and refer them to the counselor.
We do not know how to treat them when they complain of dryness…I am not sure so I refer them to the counselor. (Dr. I, oncology medical officer, 2 years of experience)

Lack of training
Lack of training in sexual health and FSD leads to a lower level of confidence in HCPs regarding discussing sexual problems with their patients. As stated earlier, most of them attributed not knowing about FSD to not having the proper training on this topic either during their undergraduate or postgraduate studies. In addition, several HCPs stated that they had never attended any related courses and FSD was never discussed in their continuous medical education program at the hospital level: We do not have training about FSD and its management, just from our experiences from seeing the patient with sexual problems…I usually will spend time with them …if needed, I refer them to relevant specialists. (Dr. D, surgeon, 12 years of experience) This is in contrast with junior HCPs, for whom sexual health and FSD were included in their undergraduate syllabus. However, knowledge without training caused them to have less experience in handling such patients.
We learn about FSD during medical school. But we rarely handle patients with sexual dysfunction. We saw erectile dysfunction cases; however, we did not know how to manage them. We did not have much exposure. (Dr. I, oncology medical officer, 2 years of experience)

Socio-cultural influences
Discussing sexual problems with women with breast cancer was also influenced by environmental factors. Most exposed and lack-of-exposure HCPs respond that the social culture of Malay ethnicity plays a greater role in determining the way they converse or being consulted by patients. Among the socio-cultural barriers experienced by HCPs in doctorpatient consultation were "sex is privacy, reticence and embarrassment," "sexual health is not patient's priority," and "sex conversation is influenced by social status."

Sex and privacy, reticence, and embarrassment
Most of the HCPs shared their difficulties in initiating conversations about sexual problems among women with breast cancer because culturally the topic is considered taboo.
Most patients refuse to talk about it…because sexual issues are too private for them. (Dr. N, surgeon, 11 years of experience).
This phenomenon has caused some of the lack-of-exposure HCPs to consider it to be offensive to talk about sex if their patients did not complain about it first. They were also embarrassed to deal with sexual problems, as many confessed to being too shy to initiate and discuss FSD and sexual health. This made most HCPs keep quiet and hope that patients would disclose their problem during the first encounter themselves.
Usually, I don't start asking if they have any sexual problem... I am afraid this would hurt their feeling. I just wait if they want to tell me the problem first. (Mrs. J, oncology staff nurse, 4 years of experience) However, the exposed HCPs realized that they are supposed to develop a rapport, take some time, and make a move to start the conversation if they want these women to voluntarily reveal their problems. I am very shy. I force myself to ask…to provide treatment and save their marriage. I usually say sorry first before I ask about sexual issues because I want to make the conversation as neutral as I can and to develop trust in the patient. (Mrs. G oncology counselor, 13 years of experience) The sensitivity of the issue in the community has caused HCPs to have trouble finding the appropriate words and ways to ask their patients about sexual problems in a manner that would ensure that patients would be less likely to feel upset.

Sexual health is not the patient's priority
In elaborating on the influence of culture on women with breast cancer, Dr. H realized that Malay culture is more entrenched in east coast states, particularly in suburban and rural areas: HCPs revealed that most patients under their care seemed more worried about their disease and the treatment's side effects.
They are more concerned about skin dryness and itchiness after radiotherapy. Even cervical cancer patients who receive radiotherapy for the pelvic area only complain about vaginal dryness rather than telling us about sexual dysfunction. (Dr. I, oncology medical officer, 2 years of experience) HCPs also explained that their patients choose to turn to religion when they are sick because they believe illness to be a trial from God. Thus, it is thought to be a more appropriate time for patients to ask for healing of their illness as well as forgiveness: They focus more on their family; the problem arises after they get cancer. And some patients said the important things for them now are to seek God's forgiveness and abide more frequently by religion. (Mrs. A, surgery staff nurse, 11 years of experience) These women choose to provide sexual satisfaction only for their spouses while they suffer from breast cancer and ignore their satisfaction.
When asked about sexual intercourse, patients said it is like before. When I asked about satisfaction, they kept quiet... They do it [sexual intercourse] just to give their spouse sexual satisfaction. For them, this is enough. (Dr. E, psychiatrist, 4 years of experience). They told us that their desire for sex was reduced and they were not involved in sexual intercourse as much compared with when they were younger (under 40 years). They said their husbands did not bother [them] much on that. (Dr. L, oncology medical officer, 3 years of experience)

Sexual discussion and social status
The appropriate social status is viewed as an important element in taking a sexual history and having discussions on sexual health with women with breast cancer. Many lackof-exposure HCPs realized that gender difference and being single prevented them from obtaining an adequate sexual history from these patients since they felt less comfortable and embarrassed.
I have seen a conversation between a female patient and a male doctor. The doctor asked how her sexual relationship with her husband was. The patient started to cry and then was reluctant to talk further. The male doctor then offered her to see a female doctor. She agreed. (Mrs. J, oncology staff nurse, 4 years of experience) Age is another factor that is commonly considered a cutoff point to discussing sexual health with patients. Many lack-of-exposure HCPs perceived sex as not important to elderly patients.
Sexuality for them… is more about spending their lives together, like touching and caressing each other, not sexual intercourse. (Mrs. F, surgery staff nurse, 5 years of experience).

Specialty-centric
Some of the lack-of-exposure HCPs remarked that FSD was not a big issue and gave low priority to sexual health. This causes the sexual health of women with breast cancer to almost always being abandoned. Time and privacy limitation is another sub-theme that arises since they concentrate most of their time to treat the disease according to their specialty rather than using a holistic approach or patientcentered care. Dr E, one of the exposed HCPs, commented that time and privacy were not a problem; however, there was no referral from other disciplines for FSD management.

Low priority for sexual health
A multidisciplinary approach is prudent for HCPs to manage their patients' problems holistically. They were more focused on treating cancer itself and explaining the side effects of treatment.
In breast cancer, we only concentrate on her cancer. For sexual problems, we rarely ask because our main concern is to identify any complications from the chemo drugs. (Mrs. C, oncology staff nurse, 19 years of experience). I do not have much information on that because I rarely ask about sexual problems in my patients. I concentrate more on financial and emotional issues. (Mrs. M, oncology counselor, 15 years of experience).
A specialist in psychiatry commented that there were no referrals from other health disciplines to the psychiatrist for appropriate FSD treatment.
I never get a referral from other departments for these problems. (Dr. E, psychiatrist, 4 years of experience).

Time and privacy limitation
Limited resources and the overwhelming number of patients who visited oncology clinics lead to HCPs not having enough time and no privacy to screen for FSD: We cover about 40 patients per day only in the morning session. We also get referrals from our ward if any problems arise with in-patients from other departments and other hospitals.
[…] More time is needed for complicated cases and we focus more on their disease rather than talking about sex. (Dr. I, oncology medical officer, 2 years of experience). We shared two medical officers in one room, hence there is no privacy for the patient to discuss sexual problems. (Dr. O, medical officer, 2 years of experience).
Difficulty to spend a suitable time also acts as a barrier for HCPs to discuss sexual issues with their patients even though patients are admitted to the ward. The stage of the disease and the side effects of medications also limit the conversations about sexual issues.

Discussion
The synthesis of the findings of this study is guided by the Health Belief Model, which theorizes the influence of modifying factors such as knowledge, social culture, and working culture on HCPs' sexual health perceptions and management (Fig. 2). The present study identified two types of HCPs: those with higher awareness of sexuality and sexual health (exposed HCPs) and those lacking such awareness (lackof-exposure HCPs). The exposed HCPs had a better understanding of sexuality and sexual dysfunction. The lack-ofexposure HCPs, i.e., most of the HCPs, exhibited lower cues to action (Fig. 3) because they were unsure about the definitions of sexuality and sexual dysfunction. Thus, a narrow definition of sexuality can influence HCPs' judgement about sexual health and FSD and their evaluation and management  [8,9,[22][23][24].
Training is another cue to action. The present study found the training and communication skills of HCPs regarding sexual health to be inadequate. Other studies have also found these phenomena to be the reasons for HCPs' lack of knowledge in addressing and treating their patient's sexual health concerns [25][26][27]. The lack of understanding of their role related to patients' sexual health also worsens their ability to address sexual problems [28,29]. Furthermore, the lack of time and privacy in the clinical and ward settings creates a barrier to the appropriate management of sexual health concerns. The examination rooms are often shared, and the wards tend to be shared open spaces as well [30][31][32]. Finally, the HCPs' ability to change personal attitudes about sexuality is also an important factor in their involvement in screening and managing sexual health [33].
The lack-of-exposure HCPs also held the opinion that their patients focused more on their disease than on their sexual health. Thus, the assumption was that Malay women were less likely to experience FSD. They believed that culture, religion, and family influenced the patients' concerns about sexual health. In Malay culture, women often prioritize satisfying their families' and husbands' needs; thus, their sexual health is often neglected, and sexual issues are kept hidden [34,35]. This situation has led to HCPs' perception that communicating about sexual health and FSD is less beneficial and therefore not a priority in patient management [22,24,36].
Embarrassment is another example of the perceived barriers for the lack-of-exposure HCPs, contributing to their and their patients' discomfort in discussing sexual issues [22,24,37]. Embarrassment affects their ability to ask the appropriate questions and to think beyond the usual care in their efforts to improve the patients' quality of life [38]. Instead, they tend to not consider the effects of the long treatment duration and ignore patients' sexual health until the onset of distress or depression [22,39]. The differences between the doctors and the patients regarding age, marital status, and gender constituted additional perceived socio-cultural barriers [33,38,40]. Previous studies have concluded that most HCPs are uncomfortable about interviewing opposite gender and elderly patients because the patients prefer doctors of the same gender and a similar age [30,40]. A survey in the UK found that public nurses preferred to have consultations about sexual issues with same-gender patients [41]. Similar results were found for primary care specialists in Malaysia regarding questions about the patients' sexual issues [22].
Most of the lack-of-exposure HCPs, especially the medical officers and staff nurses, had limited time for managing their patients because they were more focused on completing the tasks related to the management of cancer. Time was not a problem for the counselor and specialists; nevertheless, sexual issues were not likely to be discussed with the patients because of embarrassment and socio-cultural factors. Only a few exposed HCPs with a sexual training background had discussed sexual health with patients. Indeed, the HCPs with sufficient training, communication skills, and knowledge about sexual issues did not consider time to be a significant barrier to communication about such issues [23,37].
Thus, the lack-of-exposure HCPs perceived women with breast cancer as being unlikely to have sexual difficulties and FSD (lower perceived susceptibility). They also perceived these women to be less likely to have marital disharmony and psychosocial and health deterioration (lower perceived severity). This led them to believe that there was little benefit in evaluating the sexual health or FSD of their patients; consequently, fewer diagnoses and referrals were made in this regard. Finally, the HCPs' specialties and the time they required were also perceived as barriers to discussions about FSD. Ultimately, the findings supported those of other studies [38,39,42].
In contrast, the exposed HCPs perceived women with breast cancer as being at risk for FSD. Their colleagues' failure to make referrals was a perceived barrier and the reason for the low number of patients with FSD diagnoses. The lack of updated knowledge was another barrier. However, most of the lack-of-exposure HCPs had greater insights, which improved their self-efficacy and allowed them to overcome erroneous understanding, attitudes, and self-barriers [43]. Thus, the enhancement of HCPs' self-efficacy helps to reduce the perceived barriers.
Self-efficacy is an important component for successful communication to reduce erroneous assumptions and negative influences among HCPs. It accounted for the individual differences in health behaviors. Self-efficacy is a powerful predictor of the intent to communicate about sexual health [44]. The findings indicate that individuals with self-efficacy are confident in their ability to communicate successfully about sexual issues.
There are a few limitations in this study. There was a low participation rate, especially that of male HCPs. Most of the HCPs were female, married, and Malay; thus, the views, experiences, and perceived barriers of single male HCPs and other ethnic groups were not reflected. We identified most of the HCPs' views and experiences in managing FSD were on heterosexual women. Further studies are needed to investigate the differences among HCPs in the Malaysian states regarding the management of FSD and in managing other sexual issues such as changes in sexual orientation or practices in women with breast cancer.

Conclusion
The HCPs need to acknowledge the prevalence of FSD and its impact on emotional and psychological care in women with breast cancer. Therefore, interventions to empower the knowledge, break the socio-cultural barriers, and improve the clinic settings are crucial for HCPs in managing FSD confidently.