Beliefs that contribute to delays in diagnosis of prostate cancer among Afro‐Caribbean men in Trinidad and Tobago

Abstract Objective The aim of this study was to explore Trinidad and Tobago (TT) men's prediagnosis experiences of prostate cancer (PCa). This study is part of a wider project that examined men and their partners' experiences of routes to diagnosis for PCa in TT. Methods Men (n = 51) were voluntarily recruited to semi‐structured interviews from four centres. Data were analysed following principles of grounded theory. Results Major barriers to medical help seeking were highlighted as lack of knowledge and awareness of the prostate gland and symptoms of PCa, the digital rectal exam (DRE), prostate‐specific antigen (PSA), cultural and religious beliefs, and hegemonic masculinity norms and nonreporting of bodily changes to GPs. Fear of DRE, distrust in providers, and misinterpretation of bodily changes as related to ageing and diabetes mellitus also contributed to delays towards seeking medical help. Men's interactions with pharmacists and traditional healers lengthened the time taken to consult with health care providers for prostate concerns. Conclusions TT men's PCa prediagnosis experiences are important to unearth barriers and facilitators to care along routes to diagnosis for this disease. This can help target specific health promotion strategies to motivate men to seek medical care for symptoms in a timely manner.

symptoms and the meanings attached to these and associated helpseeking actions. 6

| Aim, objective, and research questions
The aim of this article is to report on TT men's prediagnosis experiences of bodily changes and symptoms to unearth their beliefs and perceptions about their illness along routes to diagnosis of PCa. The research questions were as follows: "What are TT men's prediagnosis experiences of PCa?" "What are men's beliefs and meanings about PCa?" "What beliefs and interpretations guided men's help-seeking for prostate symptoms?"

| Methodology
Grounded theory (GT) was deemed appropriate for this study as very little was known about why TT men present with symptoms of advanced PCa and meanings they associate with their bodily changes.
GT enables the researcher to capture psychosocial thoughts and processes of behaviour to explain "how" and "why" men behave in a particular way regarding their experiences of symptoms leading up to diagnosis. 7 This study utilized a Straussian GT approach, which employs symbolic interactionism (SI) and considers the micro and macro as well as broader contextual factors (socio-economic, political, cultural, and religious) that may influence the phenomena under examination. 7 This enabled the research to include multiple perspectives as well as the social processes governing behaviour to be unearthed. GT is an inductive process that facilitates an unravelling of participants' experiences and enables theory development that is representative of participant's experiences. 7 Reflexivity is embedded in SI, which enables the researcher also to reflect on her assumptions and personal biases and transparency of research procedures throughout the trajectory of the study. 8

| Ethical approval and considerations
Ethical approval was obtained from University Ethics Committee, University of Surrey (EC/2014/91/FHMS) and by each participating regional health authority (RHA) in TT (North West, North Central, and Division of Health and Social Services). Participants' identities were protected by use of pseudonyms. Institutions were also anonymised to maintain confidentiality.

| Recruitment and data collection
As the study purpose was to explore men's experiences leading up to diagnosis with PCa, it was critical to target those diagnosed with this disease. Therefore, urology and oncology centres in Trinidad (n = 2) and Tobago (n = 2) were targeted to recruit men recently diagnosed with PCa.
A research flier was utilized at centres to recruit potential participants to the study. Men identified with PCa were approached with the help of oncology staff using the participant information sheet.
Once a man was identified as interested in the study, he was  Table S1 shows the eligibility criteria. It was thought important to capture all representations of ethnicities from Afro-Caribbean men in TT as outlined in Table S1. 2 Men from other ethnic groups, Indo-Caribbean (East Indian ancestry) and Chinese, were also included in the study. This achieved a diverse and heterogeneous sample as shown in Table S2. Demographics details were obtained prior to the conduct of interviews. All interviews were audio-recorded and transcribed by M.O.

| METHODS
Face-to-face semi-structured interviews guided by a topic guide were used to explore men's beliefs and meanings of their journey to diagnosis enabling flexibility towards their experiences through narratives and in-depth accounts of their experiences. 9 These enabled the researcher to engage with participants and build rapport while observing facial expressions, tone of voice, and body language. The interview commenced by asking an open question to build rapport, "Can you tell me a little of yourself?" This enabled participants to be comfortable before getting into the body of the interview. The question "Can you share with me your story as to how you came to where you are now?" facilitated men's report of their illness journey as they experienced it. Using theoretical sampling, initially three interviews were conducted with men and transcribed. Concepts derived from these interviews guided further data collection, which was continued throughout the study. Apart from ethnicity, other variables considered during theoretical sampling are also outlined in Table S1.
Theoretical saturation was achieved with 25 men in the first island of Tobago. Thereafter, in order to achieve a comparative sample in Trinidad, similar numbers and characteristics of men were interviewed in this island. Following analytic processes such as open coding, axial coding, and selective coding procedures, 7 it emerged that the men described a process of normalisation of their symptoms and actions to self-manage and hide their bodily changes. Current and relevant literature was employed simultaneously with data analysis, which facilitated theoretical sensitivity. Theoretical saturation was achieved as no new data were emerging. 7

| RESULTS
Participants were diagnosed with PCa, aged between 42 and 90 years, and from varied ethnicities, religious, and socio-economic backgrounds (see Table S2). Themes generated from the data are discussed as (a) beliefs and meanings about PCa and normalisation of symptoms, (b) taboos and sensitivity in the experience of bodily changes and body invasion, and (c) use of herbs: "I managed it myself." Themes represent trends and patterns across the sample. Table S4 shows help-seeking delays with sample excerpts and number of men with these experiences.

| Beliefs and meanings about PCa and normalisation of symptoms
Men reported varied beliefs about the normality of the symptoms they experienced. Poor urine flow and poor stream were associated with older age. Paul reports historically that problems with urination were referred to as "stoppage of water" for those living in the country.
Ron felt his urinary dribbling was related to his drinking of tap water.
These beliefs were reported to be due to lack of knowledge of the Paul identifies that older people normalised urine problems, a problem associated by Paul with getting older, and offers his justification for why those living in rural settings do not seek help with urinary problems. As men age, they are known to suffer benign prostatic hypertrophy leading to poor urinary flow and urinary retention and not necessarily through being a symptom of PCa, and as identified by Paul, if they knew of this link between "stoppage of water" and its seriousness as suggestive of cancer, they would certainly do something about it. 10 Similarly, Ron normalized his urinary dribbling to his tap water consumption as he lacked knowledge of its association with the prostate gland. This contributed to help-seeking delays.
Some of the men (n = 32) in the study who suffered from comorbidities, such as diabetes and other past illnesses/injuries, normalised their urinary changes and back pains as related to these rather than the prostate gland. Both Glen and Alex felt that their diagnosis of cancer was for the purpose of spiritual growth. Glen perceived this as a test from God and spoke of his prior experiences of divine healing. Alex sensed that he needed to get baptized and pursued it. As such both men were not overly concerned in consulting a doctor as they indicated that their illness was part of God's plan, which indicates an extrinsic locus of control. 12

| Taboo and sensitivity in the experience of bodily changes and body invasion
Kevin and Rick delayed help seeking because of the sensitivity surrounding their bodily changes. Both men bore their pains in order to work and support their families. Their self-resilience and stoicism are connected to hegemonic masculinity. These men reported taking over-the-counter (OTC) analgesia to manage their symptoms. Leo describes how he is managing his pains "as a man," in which men perceive that they should be macho, strong, and self-resilient. Leo's pharmacist sanctioned his continued use of OTC analgesia, which hindered his medical help-seeking actions. This finding was similar to a study that identified a culture of masculinity existed among men in which they were expected to conform to societal norms. 14 Bearing pains due to stoicism and perceptions that Black men are stronger compared with other ethnicities were reported. This was reflected in Alan's and Tim's experiences.

| Use of herbs: "I managed it myself"
Most men were very keen to manage their bodily changes themselves and did not easily identify problems that needed immediate medical care. To a large extent, they avoided contact with health services.
Men felt that using herbs for health problems was a more natural and safer approach than conventional medicine.

| DISCUSSIONS
Men experienced many bodily changes (Table S3). Red flag symptoms such as blood in urine and urinary retention facilitated help seeking within 1 to 7 days. Men that experienced other bodily changes such as joint pains, numbness and pins/needles in extremities, dribbling, straining, and urgency to urinate took an average of 3 to 6 months to seek medical help. Some men took up to 2 years to seek help for back and groin pain, fatigue and weight loss, and nocturia, and some never reported symptoms of erectile dysfunction to their GPs. Barriers to medical help seeking are outlined in Table S4. TT men shared how their beliefs and meanings about bodily changes were complex, as well as their reluctance to identify illness and how they self-managed their bodily symptoms, which were often severe and considered alarm symptoms. 17 They made links between urinary problems and ageing and in so doing normalised their urinary problems as something to be expected as you age. They also made connections with other illness they had such as DM and made their own links between urinary changes and DM rather than prostaterelated symptoms. These findings resonate in other studies that highlight legitimization of prostate bodily changes as major barriers to medical help seeking. [18][19][20] The findings also demonstrate the taboo nature of symptoms that would reveal men's vulnerability and threaten their manhood, hence their approach to both conceal and self-manage symptoms as much as possible. This highlights the role of masculinity and stoicism among KING-OKOYE ET AL. 1325 Afro-Caribbean men, which aligns with the cultural context of TT.
These findings mirror another study, which examined men's first year following diagnosis of localized PCa, where men were found to hide their emotional distress by not talking about their feelings and avoiding conversations that may lead to these. 21 However, the current study differs in that most men interviewed were diagnosed with advanced and late-stage PCa. It was also found there was a taboo related to the DRE due to its connotations with homosexuality, which was also found in Ocho and Green's study among men from the general population in TT. 22 The use of OTC drugs to manage prostate symptoms among men already diagnosed with PCa were found in medical literature, which supports the current study. 23,24 Men's interactions with pharmacy staff for OTC medications during the prediagnosis phase was highlighted in this study. Use of pharmacy services for self-management of symptoms has been recorded among the general public. 25 Since pharmacy staff and pharmacists were stated as first port of call for managing bodily changes in the current study, they can be targeted as a nonthreatening way for promoting awareness of symptoms con-

| Study limitations
It was intended to recruit men from public and private health systems in order to obtain a range of experiences. A greater representation of men's prediagnosis experiences arising mostly from public health systems was noted. Capturing more men attending private health systems would have gained a better portrayal of men's experiences from both health systems.

| Clinical implications
This study fills the knowledge gap through highlighting the signifi- The role of community outreach programmes with emphasis on education has shown significant progress in increasing knowledge and awareness of the functions of the prostate gland and its connection with PCa, symptoms of the disease, and benefits versus harms of screening. 27,28 This study also underscores the importance of culturally relevant health information to promote awareness among men in TT. For example, societal norms that links with slavery and perceptions that Black men should be stronger caused help-seeking delays in the current study. Media programmes that contribute to awareness raising are pivotal to help men avoid being diagnosed with late-stage PCa and to increase survival through timely diagnosis and treatment.