Recently, Uwayezu et al. (2022) made an urgent call for education and training in psychosocial care for nurses practising in cancer care settings in Africa. The basis for this call was the level of unmet supportive care needs and the high level of emotional distress patients living with cancer in sub-Saharan Africa (SAA) experience. This call is supported by Onyeka, Onu and Agom (2023), who in a scoping review focussing on the psychosocial needs of adult cancer patients living in SAA found ‘overwhelming’ evidence of high unmet psychosocial needs.

Africa, the world’s second-largest continent, is divided by the Saharan Desert into two culturally different geographical regions. The region north of the desert is culturally influenced by Arab culture and Islam, while the region south of the desert, sub-Saharan Africa (SSA) is the poorest region in the world (The New World Encyclopedia 2020). Living in SSA is not easy, especially for women who face unique challenges. For instance, women and girls form the majority of the agricultural workforce while being responsible for the health and welfare of their families. Also, 60% of the population living with HIV and AIDS in this region is women. The coronavirus disease 2019 (COVID-19) pandemic added to the dire situation of women by increasing teenage pregnancies and child marriages (Collins 2022). In addition, SSA has the highest cervical cancer incidence and mortality rates in the world, and the rates are higher in Eastern, Southern and Middle Africa (Sung et al. 2021). Where the incidence of cervical cancer has decreased in some developed regions, its incidence is increasing in certain regions of SSA (Stelzle et al. 2021).

Although Human Papillomavirus (HPV) is necessary for cervical cancer to develop, it is not sufficient to cause cervical cancer. Co-infections with sexually transmitted diseases, such as HIV and Chlamydia trachomatis, and other factors, such as the long-term use of oral contraceptives, a higher number of childbirths and smoking, also play a role (Sung et al. 2021). Women living with HIV are six times more likely to develop cervical cancer, as they are more likely to acquire HPV infections and less likely to spontaneously clear the infection (Stelzle et al. 2021). In addition, cervical cancer can occur up to 10 years earlier in women living with HIV compared to those who are HIV negative (Snyman 2013).

It is well known that cervical cancer can be prevented by means of the HPV vaccine and screening. However, Ngwa et al. (2022) when investigating the state of cancer in SAA found this region lacks a proactive approach to cancer, and primary and secondary prevention services are poorly developed. In addition, when investigating aspects of HPV vaccination in Africa, Zhuang, Goyal and Xu (2019) found only 1% to 2% of females between the ages of 10 and 20 get vaccinated for HPV, screening is primarily opportunistic, and only a small percentage of women, approximately 19%, have been screened (Sung et al. 2021). Cancer diagnosis and treatment also pose challenges as SAA has the lowest available facilities rendering these services of any region of the world. Many patients present with advanced cancer and do not complete their treatment, as they personally have to pay for the healthcare services – something they cannot afford (World Health Organization Regional Office for Africa 2022).

Psychosocial well-being requires a person to cope with the stresses of everyday living and realise his and her full potential as a productive member of society including the physical, economic, social, mental, emotional, cultural and spiritual determinants of health (Kumar 2020). A cancer diagnosis influences the psychosocial well-being of all people living with cancer and they experience high levels of psychosocial distress throughout the cancer journey (Gorman 2018). According to Holland (Gorman 2018), the type of cancer, personal coping skills and society’s attitudes towards the disease influence the extent to which a person would adapt to this distress. Maree, Holtslander and Maree (2021a), when synthesising the experiences of women living with cervical cancer in Africa, found that the psychosocial implications of cervical cancer begin before diagnosis, often at the first experience of symptoms and continue well after treatment is completed. However, little is known about what these implications entail.

To address this knowledge gap, we selected a scoping review method. This method was preferred to a systematic review as the context of our study was SSA, which did not allow us to retrieve international evidence. In addition, we did not wish to answer questions about nursing practice and conflicting results (Munn et al. 2018). Scoping reviews allow researchers to review the extent, range and nature of research activities and include both qualitative and quantitative work, regardless of its quality. Scoping reviews also identify gaps in the existing evidence base and highlight areas needing additional enquiry. It can also be helpful to practitioners who might not have the time or resources to read the available literature (Arksey & O’Malley 2005; Pollock et al. 2021). For the purpose of the study, we included the psychosocial constructs psychological, social, spiritual, cultural and financial underpinned by the studies of Uwayezu et al. (2022) and Kumar (2020) in our search.

We used the methodological framework of Arksey and O’Malley (2005), refined by Levac, Colquhoun and O’Brien 2010), to guide our review. This framework consists of five steps. In Step 1, there is the formulation of the research question(s). Step 2 consists of a broad search to identify the relevant studies. Step 3 consists of a selection of the studies based on the inclusion and exclusion criteria, while Step 4 consists of charting the data by means of a charting form. Step 5 collates, summarises and reports the results.

We used the keywords Africa and cervical cancer in combination with psychosocial, psychological, social, spiritual, cultural and financial to search the databases Cumulative Index to Nursing and Allied Health Literature (CINAHL), Pubmed, PsychINFO, Scopus and Web of Science. We also hand-searched two key journals and the reference lists of tracked articles to identify additional studies. Studies were included if published in peer-reviewed journals in English, focussed on women diagnosed with cervical cancer, included psychosocial aspects related to cervical cancer and published between 01 January 2012 and 31 December 2021. This 10-year period was chosen as a Pubmed search showed a dearth of research before 2012. As we aimed to include only peer-reviewed, published research, we excluded literature reviews, dissertations, editorials and letters to the editor, case reports, discussion papers, conference abstracts and grey literature.

Data collection began in July 2022 and ended in September 2022. This process included the importing of the lists of publications into an electronic reference manager and then onto an Excel spreadsheet. The database search produced 284 manuscripts (n = 284), the key journal search produced six (n = 6) articles and four were identified by means of the reference lists (n = 4), totalling 294 (n = 294). Ninety-two articles (n = 92) were duplicates and therefore removed. We excluded 150 articles (n = 150) as they did not meet the inclusion criteria, based on their titles or the abstracts if the titles were not conclusive, thus 52 (n = 52) remained. After screening the full texts of these articles, 34 articles were excluded and 18 (n = 18) were included in the review. Two researchers independently applied the selection criteria and a consensus meeting confirmed the work included in the review. A PRISMA flow diagram (Figure 1) presents the details of the search output.

To allow us to capture the data of the work included in the review, we developed a charting form and captured the authors, year of publication, country where the study was conducted, journal of publication, study purpose, study population, sampling method, sample size, data collection method and instrument, data analyses method and the major results (see Online Appendix 1). A separate data extraction sheet, supporting a template analyses style (Brooks et al. 2015), extracted the reported psychosocial issues. We used descriptive statistics and content analyses to analyse the data.

To enhance the rigour of the study, we measured our study against an evidence-based checklist, aimed at improving the quality of scoping reviews, published by Cooper et al. (2019). We also used an iterative team approach (Levac et al. 2010) by refining the previous step before commencing to the next step.

A.A.H. approved the final draft.

Only a small number of studies, 18 in total, published over a 10-year period, could be found. In addition, only one of the studies focussed on a psychosocial domain specifically, while information about psychosocial issues was reported as part of other investigations. Screening for cervical cancer and living with a cervical cancer diagnosis were also investigated in the same study, which complicated the abstraction of the psychosocial issues women living with cervical cancer experienced.

The research output, originating from South Africa, Ghana, Ethiopia, Zambia, Kenya and Rwanda, did not represent the incidence of cervical cancer in SSA. Eswatini has the highest incidence of cervical cancer in the world followed by Malawi, which also has the highest mortality rate, which is seven times the global rate (Gerstl et al. 2022). Eswatini supports citizens to access specialist healthcare, such as cancer care in neighbouring countries, while Malawian citizens do not have access to radiotherapy, thus hampering curative treatment (Masamba 2015). Having to travel to other countries for treatment and/or having the prospect of not receiving standard treatment could have devastating implications on psychosocial health; however, there was no investigation into this. In addition, recent reports indicated an increase in the incidence of cervical cancer in seven sub-Saharan countries – Gambia, Kenya, Malawi, Seychelles, South Africa, Uganda and Zimbabwe (Sung et al. 2021), while only two of these countries reported issues pertaining to the psychosocial implications of a cervical cancer diagnosis. Unfortunately, research funding is the major barrier hampering cancer research output in Africa, as the little research funding available is primarily provided by governments and international funders (Kayamba et al. 2021), which could explain the low and skewed research output.

Considering the nature of the psychosocial domain, it seems logical that most of the studies were qualitative, as qualitative work attempts to understand people’s experiences, beliefs, behaviours, attitudes and interactions (Gray, Grove & Sutherland 2021). However, the quantitative work added important information about the quality of life and sexuality, how the domains and symptoms differ between women diagnosed with HIV and those who are HIV negative, and how the domains changed during and after having had treatment. As supported by other reviews conducted in Africa (Maree et al. 2021a; Maree, Khutjwe & Swart 2021b; Maree & Schmollgruber 2014), interviews were the most popular data collection method, which was also used in some of the quantitative work. As the average literacy level of sub-Saharan African women 15 years and older is 59% (The World Bank 2022), interviews are an appropriate data collection method as they do not consider literacy and/or mother tongue (Gray et al. 2021).

Our study provides evidence that the lack of knowledge of cervical cancer remains a problem, influencing health-seeking behaviour and resulting in mistrust and fear. However, despite being widely publicised and well known, investigations continue into the lack of knowledge of cervical cancer. What is concerning is the finding that patients are not informed about their diagnosis and are not provided with the information they need to have control over their own lives. Truth telling, originating from the ethical norm autonomy (Varkey 2021), obliges healthcare practitioners to provide patients with the information they want or need in a way they understand (Athanas, Gasto & Renatha 2020). However, in clinical practice, there is often conflict between the ethical principles of beneficence and autonomy (Varkey 2021), complicating truth telling and information giving, as healthcare practitioners want to protect patients from difficult unpleasant emotions and foster hope (Sarafis et al. 2013). Even though sharing information about a cancer diagnosis is influenced by a cultural communication style (Athanas et al. 2020), cancer patients across cultures want more information about their diagnosis and prognosis (Sarafis et al. 2013) and as seen from our study, withholding information caused unnecessary emotional pain.

The work included in this review highlighted the fear of cervical cancer treatment, especially brachytherapy; however, this fear subsided while the fear of recurrence, also influenced by culture (Anderson et al. 2021), continued and created constant anxiety. This finding contrasts with that of a systematic review on the fear of recurrence, including work from the developed world only (Simard et al. 2013). This study reported a low to moderate level of fear of recurrence; however, this fear was one of the top concerns identified and the most frequently unmet need found in the current study. In addition, the fear of recurrence remained stable and did not change during survivorship. Whether this trend would apply to people living with cancer in Africa, specifically those diagnosed with cervical cancer, remains unknown, as there is no research answering this question available.

As seen in our study, experiencing the symptoms of cervical cancer and having had treatment for cervical cancer lead to sexual problems. Having sexual problems threatened women’s relationships with their husbands or partners, and they feared their spouses would reject and abandon them, which did happen for some. There is much description of sexual problems because of the treatment of cervical cancer (Shankar et al. 2017), but, as supported by this study, many women depend on their life partners financially and losing their partners means losing their livelihoods. In addition, as seen from our study, being financially dependent hampered the women’s health-seeking behaviour and access to treatment. Denny, Quinn and Sankaranarayanan (2006) support this finding and describe women living in developing countries as poor, uneducated and disempowered. Dominic, Ogundipe and Ogundipe (2019) found having a bank account, being part of the labour force, having basic education and being the head of a household enhanced women’s decisions to access healthcare facilities. This is a complex issue involving cultural beliefs but could add to the body of knowledge if there could be comparisons in terms of cervical cancer.

Using traditional healers and medicines as the first port of call when experiencing the signs of cervical cancer delayed diagnosis and the treatment available. However, this is nothing new, as according to Matsheta and Mulaudzi (2008), black women consult traditional healers before they consult healthcare professionals. The authors also found South African traditional healers have good knowledge of cervical cancer care. This is in contrast with the Ugandan study of Mwaka et al. (2021) who found traditional healers considered cancer as a new and challenging disease and perceived gynaecological cancers, especially as sexually transmitted or the result of dirt accumulation. To discuss the value of traditional healing and medicines in healthcare is beyond the scope of this study; however, of note is that women used traditional healers and medicines when the healthcare system failed them (Van Schalkwyk, Maree & Dreyer Wright 2008), which could result in negative disease outcomes.

As evidenced by our study, some women blamed themselves for their cervical cancer diagnosis, as they believed God was punishing them for wrongdoing. Anorlu (2008), in a sub-Saharan perspective of cervical cancer, supports this finding as does Shinan-Altman, Levkovich and Hamama-Raz (2022) in a study conducted in Israel. However, the self-blame was because of ignoring the symptoms of cervical cancer and not because of God’s wrath. Block, Dafter and Greenwald (2006) warn that self-blame can persist and lead to helplessness, which are issues needing investigation before conclusions can be made.

The study provided evidence that work focussing on the psychosocial implications of a cervical cancer diagnosis in women living in SSA is limited, as only 18 articles could be included in this review. The work did not represent the countries with the highest incidence and mortality rates or those without standard treatment that must refer women to other countries for care. Only one study focussed specifically on a psychosocial domain; the rest investigated other topics, such as screening, in addition to a cervical cancer diagnosis and tended to report little about psychosocial issues per se. The quantitative studies primarily examined quality of life. Interviews were the most commonly used data collection method, with only non-random sampling employed. Fifty per cent of the studies reported a lack of knowledge about cervical cancer; however, none included a program to improve knowledge and health-seeking behaviour, which is crucial for addressing psychosocial outcomes for patients. There is an urgent need for such initiatives. The psychosocial implications for women who were unable to receive standard treatment because of unavailability or cost were not investigated and need prioritisation. Similarly, studies on communication, information sharing and truth telling are needed to improve clinical practices and the psychosocial health of those affected. As the fear of recurrence creates anxiety and depression that do not subside over time, longitudinal work is necessary to explore this phenomenon and determine how to support patients on a long-term basis. Lastly, we urgently need research that focusses on the psychosocial health, implications and support needs of these women, which are not embedded in other studies.