Introduction

There is growing recognition that sexual dysfunction is a common and potentially serious complication of diabetes in men and women globally [1, 2]. Studies in high income countries (HICs) have found diabetes to be a significant risk factor for erectile dysfunction (ED), with men with diabetes reported to experience a three-times greater age-adjusted probability of ED than those without diabetes [3]. Similar trends have been found in sub-Saharan Africa (SSA). For example, studies in Ghana [4], Nigeria [5] and Ethiopia [6] have observed prevalence rates of ED in men with diabetes to be between 68% and 73%, while a study in South Africa found a two-times increased rate of ED in patients with diabetes, compared to men without diabetes [7]. Erectile dysfunction has also been shown to be a strong predictor of poor quality of life and negative psychosocial outcomes among men with diabetes, including in SSA [8, 9].

Studies on the high prevalence, risk and burden of sexual dysfunction in diabetes, especially amongst men, has been instrumental in raising the profile of this issue. Yet sexual dysfunction amongst people with diabetes is still neglected within clinical practice. As noted in a recent review of global diabetes guidelines, “sexual dysfunction is still an under-appreciated, under-recognized, under-discussed, and commonly untreated complication of diabetes” [2]. Moreover, little is known about how people with diabetes perceive and experience sexual difficulties, and the bio-psychosocial contexts of these experiences, particularly in low- and middle-income countries (LMICs) [10–12]. These issues are difficult to identify and explore through checklists of physiologic sexual dysfunction and quality of life scales typically used in quantitative research on sexual functioning [11, 13]. Yet qualitative social science research on this topic is scarce, particularly in LMICs [13, 14]. With the exception of research in Brazil [15, 16], most qualitative studies on sexuality in the context of diabetes have been conducted in HICs, including the USA [17], UK [11], Sweden [18], and the Netherlands [14]. This small body of research in HICs has provided important insights into the negative psychological effects of sexual difficulties for patients and their partners, and the adverse impact of these difficulties on patients’ gender identities and interpersonal relationships. However, more in-depth qualitative explorations in this area, which investigate broader notions of sexual wellbeing and personhood beyond bio-medical sexual dysfunction, is needed and especially in LMICs [10].

The aim of this paper is to report on the perceptions and subjective experiences of sexual functioning and sexual well-being amongst men with diabetes in three SSA settings—Cape Town and Johannesburg, South Africa and Lilongwe, Malawi.

Studies have shown that the relationship between diabetes and sexual dysfunction is unclear and likely to be multifactorial, including neurologic, vascular, endocrine and psychosocial mechanisms related to both the disease and treatment [19, 20]. Verschuren et al [10] offer a biopsychosocial conceptual model on the relationship between chronic illness and sexuality that acknowledges the complex influences on the experience of sexual functioning. Verschuren and colleagues developed this model through a comprehensive review of the literature as well as their many years of clinical experience. The model has subsequently been used as a guiding theoretical framework in various studies on chronic illness and sexuality [12, 21, 22]. The key assumption of this model is that sexuality is a multifaceted phenomenon, shaped by organic, hormonal, and psychosocial factors, and that chronic illness involves psychosocial stressors in addition to physical symptoms. The model distinguishes “sexual functioning” from “sexual well-being”, with the former comprising the bio-medically defined ‘normal’ physiological standards of the sexual response cycle and the latter involving the subjective experience of sexuality in the context of an individual’s personal life and relational situation.

This multidimensional model and its key assumptions thus provides a useful theory-oriented framework for understanding the various interacting biopsychosocial processes that shape perceptions and experiences of sexual functioning and sexual well-being within the context of diabetes. We incorporated this model during the analysis stage of our research to enrich our interpretation of the findings. That is, we used it to help us understand the relationship between the biomedical and social experiences of sexuality that we saw emerging from the data, and to make a distinction between experiences of sexual functioning and sexual well-being. A better understanding of these issues will provide important insights on the lived experience of sexual difficulties, and associated impact, meanings, values and priorities amongst men with diabetes. This in turn can be used to inform strategies to better respond to the sexual concerns and support needs of people with diabetes, ultimately contributing to more effective, comprehensive, and holistic treatment and care.

Methodology

Data collection

This sub-analysis on sexuality draws on the data obtained from the FGDs and individual interviews conducted with men in all three settings. The composition of FGDs for the main study were stratified by gender (i.e. men only and female only groups), to enable participants to potentially talk more freely about their personal views and experiences. All the male participants who took part in the broader formative and process evaluation study (including those who were interviewed and those who took part in the male FGDs) constitute the sample for this secondary analysis on sexuality (See Table 1 for Demographic details).

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Table 1. Characteristics of participants (N = 47N.

https://doi.org/10.1371/journal.pone.0202413.t001

FGDs lasted 2–3 hours, while interviews lasted between 1 and 2 hours. Interviews and FGDs were conducted by researchers trained in qualitative research, and took place between November 2015 and July 2017. In Malawi, data collection was done in Chichewa, and in South Africa, data collection was done predominantly in English, and with translation assistance in Afrikaans and isiXhosa (Cape Town) and isiZulu (Johannesburg). Using semi-structured topic guides, the following themes were explored in FGDs and interviews: basic demographics; experiences and perceptions of diabetes; sources of information and support; challenges and opportunities in managing diabetes; experiences of receiving healthcare; and views about an SMS text message intervention to provide support for diabetes (S1 Appendix. Interview and Focus Group Topic Guide). Whilst the interview and FGD guides did not focus on sexuality, male and a few female participants raised the issue spontaneously when asked about their experiences of living with diabetes. Male participants raised the issue of sexuality more commonly, more consistently and in greater depth. This provided material for a secondary analysis of their experience of sexuality in relation to living with diabetes. In the few cases (3 interviews) where sexuality was not spontaneously raised by the participants themselves, we probed by asking: “Sometimes people living with diabetes find it hard to be intimate with their partners. Is this something you experience?”. Interviews and FGDs were digitally recorded, transcribed and translated into English where applicable.

Results

Discussion

In this study we report on how men with type 2 diabetes in three SSA settings (Cape Town and Johannesburg, South Africa and Lilongwe, Malawi) perceive and experience sexual functioning and well-being, and the biopsychosocial contexts of these experiences. We used Verschuren et. al.’s [10] conceptual model on the association between chronic disease and sexuality to make a distinction between experiences of sexual functioning and sexual well-being, and to understand the processes by which disease-related psychological and relational factors may, interactively, affect the sexual lives of men with diabetes. To our knowledge, this is the first qualitative study in SSA to focus on men’s perceptions and experience of sexuality in the context of diabetes.

The men in this study identified sexual problems as a fundamental concern of living with diabetes. Most reported experiencing significant changes in sexual functioning since being diagnosed with diabetes; including a loss of or decrease in sexual interest, an inability to have or maintain an erection as well as a more general sense of having ‘problems’ or ‘unhappiness’ in the bedroom. Difficulties with sexual desire, erectile function, and ejaculation are indeed commonly reported as direct and indirect consequences of the disease amongst men with diabetes [10]. What was striking was the gravity of the psychological and interpersonal effects of these sexual problems. That is, the men’s experiences of sexual dysfunction went beyond the biomedical, impacting on their gender identity, emotional intimacy with partners and sense of security in the relationship. These experiences and perceptions were remarkably similar amongst the participants and across the three study settings.

A sense of failed gender identity emerged as a particularly significant psychological consequence of the men’s sexual difficulties. An inability to live up to expectations of sexual performance was perceived as a form of emasculation. In Brazil, studies with men living with diabetes had similar findings, where sexual problems negatively affected the men’s sense of manhood [15, 16]. These sentiments may be connected to prevailing socio-cultural notions of masculinity. In many societies, including in LMICs, virility and potency is linked to the ‘successful’ enactment of masculinity, and thus a man’s inability to ‘properly’ perform sexually is often perceived as a sign of weakness and vulnerability [27–29]. In line with these ideals, men in this study interpreted their sexual difficulties as ultimately a loss of manhood, which affected their self-worth and their sense of security in their intimate relationships.

Strained and conflictual intimate relationships was another major effect of the men’s experiences of sexual dysfunction. The relationship between chronic illnesses and ‘partner relationship’ is emphasized in the Verschuren et. al’s [10] conceptual model: chronic disease can influence a couple’s sexual relationship through both the physical and psychological effects the illness has on the well-being of the patient, and on their partner. Qualitative studies in HICs have also highlighted the negative reciprocal effects of sexual problems on intimate relationships [14, 17, 18].

Verschuren and colleagues [10] highlight the need for a better understanding of the interactive mechanisms through which a chronic disease may affect a couple’s sexual well-being and quality of their relationship. In this regard, a key finding in our study was the central role of mistrust and insecurity in the relationship. The couple’s sexual well-being was negatively affected by the diminished sexual activity, but also by the gendered psychological and social reactions of the men and their partners, which included a sense of emasculation, suspicion of infidelity, blame and conflict, mutual mistrust, and a general sense of unhappiness in the relationship.

There were indications that these psychosocial effects may impact on the men’s ability to manage their diabetes, a concern that is also acknowledged in Verschuren et. al’s conceptual model [10]. Some men feared that the loss of sexual and emotional intimacy may lead to more serious emotional estrangement, and ultimately abandonment. A few spoke directly about how their high levels of stress threatened their ability to cope with diabetes, while others feared that they could lose the critical social support that their partners provide. Fears about the potential negative effects of losing a partner’s social support may not be unfounded. Studies have shown that social support, including from one’s intimate partner, has a significant effect on the self-management of diabetes [30–32], including improving treatment adherence and associated glycemic control [33], as well as enhancing self-care activities [34, 35].

Despite the pervasiveness and negative effects of the men’s sexual problems, and despite their expressed need for more information, there appears to be a persistent silence on the part of the men themselves, their partners, and their health care providers. This is due to a combination of factors: a lack of knowledge or confusion about the reason for their sexual difficulties, an inability and/or unwillingness to communicate with one’s partner, and a general sense of unresponsiveness from healthcare workers. Other qualitative studies have also identified a lack of awareness and uncertainty about the reasons for sexual difficulties amongst patients with diabetes [11, 14–16].

The perceived lack of support from healthcare professionals was another key concern of participants. In the experience of these men, no healthcare provider had ever initiated a conversation about their intimate lives, nor provided them with any information on sexual dysfunction as a possible complication of diabetes. At the same time, the men found it difficult to raise the issue themselves, either out of embarrassment or fear of being ridiculed (a fear born out in the experience of some participants) or, alternatively, because they believed that healthcare workers lack the capacity and/or time to respond appropriately. Studies in HICs have similarly found that men with diabetes are often reluctant to talk to health care professionals because of anxiety, fears of rejection and a lack of time during consultations [36–40]. This non-discussion between professionals and patients has been described as a “conspiracy of silence”, in which both parties know sexuality is a pertinent issue, but for a variety of reasons, are unwilling or unable to talk about it [41].

What was particularly striking was the accounts of unhelpful, sometimes hurtful, and even punitive responses from healthcare providers, particularly in South Africa. Even efforts to reassure patients came across as patronizing and dismissive, only further discouraging the men from seeking help from healthcare workers. These experiences of negative treatment by health care providers may be part of a more general unresponsive health care environment [42, 43]. For example, participants in an earlier study on hypertension in Cape Town reported similar concerns about a general lack of responsiveness on the part of health care providers and punitive approaches to patients who were considered to be ‘non-adherent’ to hypertension treatment [44].

Sexual health is considered a basic human right and a fundamental part of leading a full and healthy life for many people [45], including those with chronic illnesses [21, 46]. Moreover, and as detailed in Verschuren et al.’s conceptual model [10], problems of sexual functioning and sexual well-being may be a barrier to effective self-management of diabetes, yet we need a better understanding of the mechanisms through which this may occur. In our study, we show the potential mechanisms through which sexual difficulties may be threatening self-management, be it through chronic and high levels of stress, through fractured intimate relationships, and/or through fear of losing social support from partners (real or perceived)- the latter being directly related to the ability to self-manage diabetes.

To promote more comprehensive, patient-centered, and effective diabetes care, healthcare workers may want to consider the value of increasing patient awareness of sexual problems as a complication of diabetes. This information could go some way towards helping patients to better understand the underlying reasons for their sexual difficulties and for them to find ways to address it constructively, including gaining the understanding and support of their partners. It would be useful for healthcare workers to be aware of the multiple ways in which sexual difficulties may be experienced and it’s emotional and relational impact. Healthcare workers should understand that, while aging might bring about changes in sexuality, reduced sexual functioning is by no means an inevitable process of aging [12, 47]. To assist healthcare practitioners, more concrete diabetes care guidelines which address sexual dysfunction and well-being, and which are currently limited [2], need to be developed. However, these strategies will most likely only be successful if they are part of broader, more responsive and patient-centered healthcare service, whereby patients are actively supported in their efforts towards self-management and staff are supported and motivated to provide comprehensive diabetes care.

Conclusion

Sexual difficulties emerged as a key and pressing concern for men with diabetes in this study. These difficulties went beyond physiological impediment to intercourse, comprising complex psychological and relational meanings and effects. There is a need for greater awareness on the part of patients, their partners, and healthcare workers of the experiences of sexual difficulties in the context of living with diabetes, and increased efforts to address this constructively. More in-depth research, amongst both men and women, is needed to better understand the importance of sexual functioning and sexual well-being in supporting diabetes self-management, especially in light of the rising prevalence of diabetes in LMIC settings.

Supporting information

Acknowledgments

We gratefully acknowledge the men who participated in this study, the health personnel and research staff who facilitated our access to participants, the research assistants and translators and the support of the StAR2D research team. We would like to thank past and current StAR2D research managers and staff: Carmen Delport, Veronica Madikizela, Enita Phiri-Makwakwa; Charity Mwantisi, Thokozile Lephoto, Marcia Baloyi; Francis Mkwenembela; Olivia Kadzakumanja; Bruno Pauly and colleagues, and the principal and co-investigators of the StAR2D study: Naomi Levitt, Shane Norris, Moffat Nyirenda and Mia Crampin. We thank the health authorities in Lilongwe, Johannesburg and Cape Town for granting permission for the study.