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Abstract

Cancer is a major cause of morbidity and mortality in many sub-Saharan African countries, but the field of psycho-oncology is underdeveloped. This article reviews the literature on psychosocial oncology in sub-Saharan African with a view to developing a research and practice agenda in the field. The search engines used were Google Scholar, Psych Info, Web of Science, and PubMed and articles were focused on but not limited to the past 10 years. The search terms were ‘Africa, psycho-oncology, psychosocial oncology, mental health, and cancer’. The review is structured as follows: cancer surveillance in sub-Saharan African, behavioural risk factors, cancer screening, and psychosocial issues related to various types of cancers. Psychological reactions in the context of cancer including adjustment, depression, and anxiety disorders are also discussed. It is suggested that sub-Saharan African countries require appropriate funding to support improved systems of surveillance and implementation of cancer registries. Public health and behavioural interventions are needed to increase the awareness of cervical cancer and preventive health-seeking behaviour among high-risk women. Restrictive laws on opioids need to be reconsidered and behavioural health campaigns to control obesity, limit salt intake, and increase awareness of the risks of ultra-violet light are necessary to reduce the incidence of various cancers. Psychosocial support is necessary to ameliorate depressed mood, anxiety, and anticipation and fear of death among persons living with cancer and their families in sub-Saharan Africa. To this end, the training of practitioners to strengthen psychosocial aspects of care, especially palliative care, is a priority.

Keywords

Behavioural risk factors cancer psycho-oncology sub-Saharan Africa

Background

This article brings into focus the psychosocial concerns of persons living with cancer in sub-Saharan Africa (SSA). I reviewed the literature on psychosocial oncology as applied to SSA using the search terms ‘Africa, psycho-oncology, psychosocial oncology, mental health, and cancer’. The search engines used were Google Scholar, Psych Info, Web of Science, and PubMed, and articles were focused on but not restricted to the past 10 years.

Cancer is a major cause of morbidity and mortality in many SSA countries (Rebbeck, 2020). Despite major advances in psychosocial oncology internationally, SSA has seen few benefits in the field (Grassi et al., 2012). The International Psycho-Oncology Society (IPOS) Human Rights Task Force has argued that psychosocial cancer care is a human rights matter (Travado et al., 2017). Yet, Africa is the most under-represented country in terms of organised psychosocial care for persons with cancer. Only one African country, Nigeria, has a psycho-oncology society, founded in 2009 (Grassi et al., 2016). This article calls on psychologists and other behavioural scientists to direct attention to the psychological, emotional, and mental health needs of persons living with cancer in the region.

Behavioural risk factors for cancer in SSA

Only 15% of African countries have a population-based cancer registry and 2% have high-quality coverage of mortality registration (WHO Cancer Regional Profile, 2020). Tobacco use, diet, sun exposure, and socio-economic disparities, which are all behavioural matters and therefore of concern to psychologists, are the main risk factors associated with various forms of cancer. Tobacco use is most commonly associated with lung and head and neck cancers (Fitzgibbon et al., 2015) and varies among SSA countries, with the prevalence of tobacco smoking as high as 32.5% in Nigeria (Oyewole et al., 2018). Two dietary risk factors are also associated with lung cancer, namely arsenic in water and beta-carotene supplements (Fitzgibbon et al., 2015). Concentration of arsenic in SSA is high in both surface and groundwater, ostensibly due to mining operations, agricultural drains, local sediments, and industrial waste (Ahoulé et al., 2015).

Obesity is associated with elevated risk for breast, liver, colorectal, oesophageal, and pancreatic cancer (Fitzgibbon et al., 2015). The SSA countries with the highest prevalence of overweight are Seychelles (64%), Mauritius (44.8 %), Cameroon (43.9 %), Botswana (41.6 %), and South Africa (41%) (Charles et al., 2015), with women having higher rates of overweight than men. High salt intake is common in SSA countries (Tekle et al., 2020), including the consumption of salt-preserved foods and is a risk factor for stomach cancer (Fitzgibbon et al., 2015). Low-cost foods, which are what many on the continent can afford, ordinarily have higher salt and other preservative content.

Ultraviolet radiation exposure is a risk factor for more than half of melanomas, basal cell carcinomas, and squamous cell carcinomas of the skin (Cust et al., 2015). There appear to be higher rates of these cancers in South Africa due to its larger population, larger proportion of citizens with fair skin in comparison with other SSA countries, and better detection capabilities than other SSA countries (Wright et al., 2020).

Several SSA countries have among the highest rates of HIV in the world (Dwyer-Lindgren et al., 2019). HIV-infected individuals may be at elevated risk of death from skin cancers as the impaired immune system of persons living with HIV may contribute to their progression. For example, cutaneous melanoma among persons with HIV is more aggressive than those without HIV (Facciolà et al., 2020). Also, non-trivial rates of oculocutaneous albinism place persons with this condition at risk of various skin tumours (Wright et al., 2020). Albinism is highly stigmatised (de Groot et al., 2021); thus, persons with this condition often present for treatment with advanced disease (Rubagumya et al., 2020).

Screening for cancer in SSA countries

Screening for various forms of cancer in various SSA countries is limited and appears to be constrained by structural factors. Common barriers to screening were found to be limited knowledge and awareness about the Papanicolaou screening (Pap smear), fear of a positive screen for cervical cancer, the belief of not being at risk, and that only those who are ill require a Pap smear (McFarland et al., 2016). In terms of structural barriers, the cost, lack of access to facilities, long waiting times, or age-related criteria for a Pap smear were found to be prohibitive for many women in the region (McFarland et al., 2016). In SSA countries, human papillomavirus (HPV) vaccination efforts to reduce cervical cancer incidence have increased due to the inclusion of HPV in the Gavi Vaccine Alliance portfolio (Black & Richmond, 2018). Eight countries (Botswana, Lesotho, Mauritius, Rwanda, Senegal, Seychelles, South Africa, and Uganda) have national HPV immunisation programmes. Yet, barriers to the availability of vaccines include limited infrastructure, funding, limitations in health worker training, the cost of vaccines, and limited cold chain equipment such as refrigerators (Sankaranarayanan et al., 2013).

The incidence of colorectal cancer has been rising steadily in many SSA countries, ostensibly as the diet of people in low- and middle-income countries (LMICs) come to resemble those in high-income countries (May & Anandasabapathy, 2019). Yet, providing routine colonoscopies in many SSA countries is limited by factors such as low acceptance rates, limited availability of medical staff, pathology labs, training opportunities for endoscopies, hospital infrastructure, and the cost of screening procedures (May & Anandasabapathy, 2019). To ensure positive health outcomes, positive screens have to be followed up and surgical and other oncological services need to be available, which in many SSA countries is not the case (Balogun et al., 2017).

Similarly, the availability and uptake of breast cancer screening in many SSA countries are inhibited by patient and health system factors. Patient factors include a lack of awareness of breast cancer, poor knowledge about warning signs, and limited knowledge about its causes and treatment (Akuoko et al., 2017). Structural factors include the lack of awareness among health care practitioners about breast cancer and challenges in accessing healthcare services due to long travelling times to clinics. There are often long patient delays, that is, the time between initial symptoms and arrival at a health clinic, and provider delays, that is, the time between the arrival of the person at the health facility and diagnosis or treatment (Roth et al., 2019).

Behavioural risk factors associated with cancer site

Malignant central nervous system tumours

The most common mental health consequence of malignant central nervous system (CNS) tumours is cognitive dysfunction, the rates of which may vary from 29% to 90% depending on the stage of the disease and access to treatment (Valentine, 2015). Limited treatment opportunities in many SSA countries may result in greater disease progression and thus higher levels of cognitive dysfunction among persons with a CNS tumour. The prevalence of common mental health disorders (CMDs) such as depression and anxiety is also high among persons who have a malignant CNS tumour, often affecting up to one-fifth of this group (Huang et al., 2017). Rates of elevated anxiety among persons with malignant CNS tumours have been found to be high in high-income countries (Valentine, 2015), which also may apply to persons living with cancer in SSA countries as well. In addition, the families and caregivers of persons with CNS tumours face considerable challenges to their own quality of life, especially in the context of cognitive decline and poor prognosis of this form of cancer. In SSA, most persons affected by CNS tumours are likely to be cared for at home, thus placing emotional and financial burden on family members.

Head and neck cancer

Tobacco use, the most important cause of head and neck cancer, is associated with the majority of cases of mouth, throat, and larynx cancer (Devins et al., 2015). Over 80% of the 1.3 billion smokers in the world live in LMICs, of which SSA forms a part (World Health Organization, 2021); thus, high rates of head and neck cancer may be expected. Facial disfigurement and voice changes following cancer surgery can affect self-image and interaction with society, which in turn can lead to relationship challenges, social isolation, and distress (Devins et al., 2015).

Alcohol consumption is also a risk factor for cancer of the mouth and throat, larynx, and oesophagus (Rehm et al., 2019). In many SSA countries, alcohol consumption is uneven and in part influenced by religious prohibitions, especially among Muslims. It is estimated that only one-third of the African population consumes alcohol (Ferreira-Borges et al., 2016). Yet, among those who engage in excessive and harmful alcohol use, it is likely that the prevalence of head and neck cancer may be elevated, especially considering the association between alcohol and tobacco use (He et al., 2019).

Other risk factors for head and neck cancer include the chewing of betel nut (Hernandez et al., 2017), inhalation of toxins such as nickel dust (Adly et al., 2017), and unprotected sun exposure (Wright et al., 2020). Considering the proliferation of mining in many SSA countries, it is to be expected that mining-related hazards, including the inhalation of toxins may place both industrial and artisanal miners at risk as well as surrounding communities. Unprotected exposure to the sun is an obvious issue in SSA as the region receives considerable exposure to solar radiation. A final risk factor for head and neck cancer is sexual activity with someone infected with HPV as it is associated with oral cavity, oropharynx, and cervical cancer (Devins et al., 2015).

Lung cancer

Risk factors for lung cancer include tobacco use, but also second-hand exposure to smoke; occupational exposures to substances such as arsenic, chromium, asbestos, tar, and soot; and air pollution (Cooley et al., 2015). Several countries in SSA now have well-developed mining industries although there appear to be no data on the relationship between the increase in mining activity and lung cancer incidence. The absence of choice for many miners who face poverty if they do not engage in income-generating work of this nature, as well as the comparative lack of knowledge of lung cancer risk, may make the hazards of mining an ongoing concern in the coming decades.

Genitourinary cancer

Genitourinary (GU) cancers such as prostate, bladder, renal, and penile cancers increase with advancing age (Roth & González-Restrepo, 2010). Given SSA’s young population, it is reasonable to assume that most African countries have a low incidence of GU cancer compared with many European countries. Prostate cancer is the most common cancer among Nigerian men (Ofuru et al., 2017) and being of African or Caribbean descent appears to be a risk factor for prostate cancer (American Cancer Society, 2020). Concerns related to physical and sexual intimacy bring into focus the importance of support for couples in intimate relationships, including couples counselling, as it is possible that partners may experience greater emotional discord than those living with cancer themselves (Collaço et al., 2018). Men who experience erectile dysfunction, a common condition associated with prostate cancer and treatment, may experience a sense of emasculation which may exacerbate distress and relationship discord (Chambers et al., 2017).

Penile cancer may be of concern in many SSA countries as risk factors include the HPV infection, as well as symptoms associated with HIV and AIDS (Onywera et al., 2020), which is more prevalent than in other regions. Delays in seeking medical treatment are often associated with fear and anxiety, which can lead to neglect or avoidance of symptoms. However, in SSA countries, fewer screening and treatment facilities compared with high-income countries likely account for delays in accessing care (Dwyer-Lindgren et al., 2019; Mpunga et al., 2020).

Gynecologic cancer

Cervical cancer is one of the more serious public health concerns in SSA, is a major cause of female cancer deaths (Black & Richmond, 2018), and is exacerbated by HIV infection (Mboumba Bouassa et al., 2017). The most common barriers to cervical cancer screening (Pap smears) are limited knowledge and low levels of awareness, fear of cancer if a screen is positive, the belief that risk of cervical cancer is non-existent, and the notion that a Pap smear is only necessary if one is ill (McFarland et al., 2016). Cultural factors include the fear of losing virginity, concern about being suspected by others to be sexually active (Abotchie & Shokar, 2009), religious beliefs about women not exposing their bodies to persons who are not their husbands (Odetola, 2011), and husbands who would not allow their wives to undergo the procedure (Lyimo & Beran, 2012). Structural factors include screening sites being too far and not easily accessible (De Abreu et al., 2013).

Poverty has been associated with the incidence of cervical cancer because of limited access to medical facilities, especially in rural areas, poor nutrition, comorbid conditions such as anaemia, malaria, and HIV infection, late presentation with the condition, and incomplete treatment due lack of funds (Anorlu, 2008). There is also a relationship between HPV and HIV. HIV-positive women are more likely to have persistent HPV infections than HIV-negative women (Anorlu, 2008). The availability of screening and correct information about its importance and follow-up treatment can play an important role in reducing the incidence of cervical cancer in SSA. In terms of psychosocial concerns associated with gynaecologic cancers and their treatment, infertility is a major source of emotional distress (Ussher & Perz, 2019). Infertility may introduce a sense of loss, feelings of isolation, and symptoms of anxiety and depression (Hess et al., 2018). In addition, the removal of ovaries results in surgical menopause, which may lead to vaginal dryness, hot flashes, and painful intercourse, all of which may negatively affect sexual intimacy and thus the spousal relationship (Donovan & Hagan, 2015). Typically, changes in body image and a reduced sense of sexual attractiveness may occur following diagnosis and treatment for gynaecologic cancers (Abbott-Anderson & Kwekkeboom, 2012). As populations in SSA tend to be younger than in other regions, these concerns are likely to be more salient considering the lateness of diagnosis and treatment in the disease trajectory (Dereje et al., 2020).

Breast cancer

In many SSA countries, the majority of persons with breast cancer have advanced disease at the time of diagnosis, leading to high rates of mortality (Akuoko et al., 2017). In focus group discussions with breast cancer patients in Bamako, Mali, a low level of breast cancer knowledge among women, their families, and medical professionals, lack of trust in the community healthcare centres, economic hardship, high costs, low quality of healthcare services, poor social support, and limited specialised oncology services were reported as reasons for detection at advanced stages (Frie et al., 2018).

Anxiety, uncertainty, and psychological distress are common at various points in the breast cancer disease trajectory with up to one-third of persons living with cancer experiencing elevated depression and distress (Kagee et al., 2018). Among a Ghanaian sample with breast cancer, depression and anxiety were in part mitigated by social support (Kugbey et al., 2020). Concerns about disgracing their families have also been noted among Ghanaians living with cancer given the stigma associated with the disease (Iddrisu et al., 2020).

HIV infection and AIDS-associated neoplasms

Common AIDS-defining malignancies are Kaposi sarcoma, non-Hodgkin’s lymphoma, and cervical cancer. The availability of antiretroviral therapy (ART) has significantly altered the disease trajectory for persons living with HIV (PLWHA). Indeed, HIV has become a chronic rather than a terminal illness (Dognin & Selwyn, 2010). Yet quality of life and mental health problems remain a challenge with persons with these conditions (Almeida et al., 2021). For example, among 688 ART users, one-third scored above the clinically significant cut-point on the Center for Epidemiological Studies Depression scale (Kagee et al., 2020). In a large epidemiological study of persons living with HIV, more than 43% were found to have a diagnosable mental disorder, most commonly depression and alcohol use disorder (Freeman & Kelly, 2006).

Psychological reactions in the context of cancer

The various phases of the cancer illness trajectory, that is, diagnosis, treatment, recovery, relapse, and palliative stage, are often accompanied by a range of stressors, such as disability, change in identity and role functioning, change in appearance, and change in the life trajectory of the person living with cancer. In response to these phases, many people experience distress that is within the normal range but some may report severe symptoms that meet the diagnostic criteria for a psychological disorder (Li et al., 2010). The most common are as follows:

Adjustment disorder: This disorder falls between a normal stress response and a mental health condition but has the status of a diagnostic category in the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases, 10th edition. It is considered to occur following an identified stressor which, in the case of persons living with cancer, is receipt of a diagnosis, having a relapse, receiving palliative care, being disabled due to cancer, coming to terms with a changed appearance, and having to confront death. The defining features of adjustment disorder are distress that is disproportionate to the nature of the stressor and significant impairment in functioning (American Psychiatric Association, 2013). The prevalence of adjustment disorder is estimated to be 19.4% in oncology settings (Mitchell et al., 2011).

Depressive disorders: Persons living with cancer who have major depression experience low mood that is constant and pervasive, a sense of hopelessness, anhedonia, that is a loss of interest or pleasure in activities that were previously interesting or pleasurable, feeling isolated from others, experiencing excessive guilt and regret, having self-critical ruminations and loathing, and thoughts of wishing to harm oneself (Fitzgerald et al., 2013).

Anxiety disorders: Receipt of a cancer diagnosis is a threat to a person’s well-being and a normative response is one of elevated anxiety. While anxiety may be functional by motivating a person to seek proper treatment and support, it is also distressing and associated with impairment in functioning. Elevated anxiety is associated with increased depression and symptoms, including fatigue and pain, as well as other psychological features such as poor quality of life, difficulty coping, poor treatment adherence and greater use of the health care system (Greer et al., 2019). The prevalence of anxiety among persons living with cancer ranges between 10% and 30% (Mitchell et al., 2011). In the general South African population on the other hand, the lifetime prevalence of generalised anxiety disorder was 2.7% and the 12-month prevalence was 1.4% (Herman et al., 2009).

The prevalence of anxiety disorders such as specific phobia, panic disorder, and generalised anxiety disorder do not appear to have been investigated among persons living with cancer in SSA countries. Nonetheless, they are often comorbid with shortness of breath, nausea, and cancer pain and are associated with poor health-related quality of life (Brown et al., 2010; Curran et al., 2012).

Management of symptoms

One of the key symptoms associated with cancer is pain, which is largely untreated and therefore uncontrolled in most LMICs, including SSA countries (Li et al., 2018). Reasons include a lack of morphine in hospitals, long distances to travel to clinics and hospitals, lack of affordability of treatment, the low priority placed on pain management by clinicians (Li et al., 2018), and concern about an opioid epidemic in Africa (van der Plas et al., 2020). Research on psychological interventions for managing pain in SSA countries is lacking and calls have been made to assess the effectiveness of culturally appropriate interventions, such as mindfulness training to reduce pain and improve mental health (Ngamkham et al., 2019).

In addition to pain, fatigue is a common symptom associated with cancer, especially in the context of radiation therapy (Nezu et al., 2003). Fatigue and weakness may result in functional limitations that impede the patient’s quality of life. To this extent, work, sport, and recreational activities may be compromised. The management of fatigue is controversial. For example, a randomised trial has shown a significant effect of an intervention that included pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (White et al., 2011). However, commentaries on this study have called attention to methodological flaws in the study, suggesting that its results are uninterpretable (Coyne & Laws, 2016). Interventions for fatigue, including in the context of cancer, remain an important area of concern, including in SSA.

Several African countries have national palliative care associations that have been established over the past 10 years but their effect on government policy is unclear (van der Plas et al., 2020). These associations are usually non-governmental organisations (NGOs) with limited funding, which in turn limits the scope of their work. Considering the significant effect that cancer pain has on the quality of life of persons living with cancer, there have been calls for pain to be managed urgently and appropriately (Li et al., 2018).

The way forward

Several implications for SSA countries flow from this review. SSA countries require appropriate funding to support improved systems of surveillance and implementation of cancer registries. Sound data on incidence and prevalence are necessary for prevention campaigns for a range of cancers. Interventions are needed to increase the awareness of cervical cancer and preventive health-seeking behaviour among high-risk women. Furthermore, restrictive laws on opioids need to be reconsidered so that drugs can be made available for pain relief. Campaigns to facilitate obesity control, limit salt intake, and increase awareness of the risks of ultra-violet light are necessary to reduce the incidence of a range of cancers. There is a need for research to identify ways for western health care and traditional cultural systems to develop a collaborative way of working to reduce stigma and increase awareness and uptake of cancer screening such as Pap smears. Psychologists have a crucial role to play in addressing attitude change, reducing stigma, and designing interventions to facilitate health behaviour change.

Psychosocial support is necessary for many persons living with cancer, for example, to ameliorate emotional distress, depressed mood, and anxiety and to manage anticipation and fear of death. For persons receiving treatment for head and neck, prostate, and breast cancers, which often have implications for body image and sexuality, counselling, including couples counselling, is often indicated. To this end, the teaching and training of practitioners to strengthen the psychosocial aspects of care, especially palliative care, is necessary. Of course, universal and equitable access to healthcare remains fundamental. Finally, in keeping with efforts to reduce HIV infections, sexual health counselling including condom use, delay of sexual debut, and regular STI and HIV testing can reduce the incidence of HIV-related cancers in SSA countries.

Considering that funding for many of the above initiatives is likely to be limited, it is necessary for greater investment in psycho-oncological services by the national departments of health in African countries. There is also a role for private philanthropic organisations to make funds available to support health departments to provide prevention and psychosocial care to persons living with cancer in SSA countries. Strenuous efforts need to be directed at psychosocial research, both basic and applied, to enhance well-being among persons living with cancer. Psychologists and other mental health professionals in SSA thus have a set of important tasks ahead in contributing to cancer control and care.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Ashraf Kagee

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The need for psychosocial oncology research in sub-Saharan Africa: a review of the terrain

Abstract

Keywords

Background

Behavioural risk factors for cancer in SSA

Screening for cancer in SSA countries

Behavioural risk factors associated with cancer site

Malignant central nervous system tumours

Head and neck cancer

Lung cancer

Genitourinary cancer

Gynecologic cancer

Breast cancer

HIV infection and AIDS-associated neoplasms

Psychological reactions in the context of cancer

Management of symptoms

The way forward

Footnotes

Declaration of conflicting interests

Funding

ORCID iD

References