A Qualitative Study on Psychosocial Challenges of Patients With Cancer in Ethiopia Using the Social-Ecological Model

Introduction

A cancer diagnosis may threaten one’s physical, emotional, and social existence (Emory Winship Cancer Institute, 2019; Gorman, 2003). Psychosocial challenges are the dynamic interactions among the physical, emotional, social, and cultural factors that come into play during the cancer trajectory (Merighi, 2016). The physical changes that arise from cancer or its treatment are the most common causes of psychological disorders among cancer patients. For instance, common chemotherapy side effects, such as hair loss, fatigue, and weight changes, have a huge psychological impact on cancer patients (Nikbakhsh et al., 2014; Rosa & Ferrell, 2023; Zainal et al., 2013). The need to adapt to hair loss, cognitive issues, and fluctuations in weight may have unexpected consequences on body image and self-perception (Emory Winship Cancer Institute, 2019; Fingeret et al., 2014). In particular, the type of cancers that require surgical removal of body parts may lead to disruptions in self-perception, appearance, physical ability, social relationships, and cognition (Brierley et al., 2019; Fingeret et al., 2014; Hubbeling et al., 2018).

In addition to its physical implications, some cancer treatments affect cognitive functioning: thinking, memory, word retrieval, problem-solving, executive function, and multitasking (Merighi, 2016). For this reason, many people living with cancer lose their independence and autonomy, as cognitive functioning may decrease over time and cancer affects every aspect of daily life. Therefore, they are forced to rely on family, friends, and health care professionals to perform everyday tasks (Head & Iannarino, 2019; Merighi, 2016; Wang et al., 2015).

Moreover, symptoms of depression, anxiety, and hopelessness are frequent among patients with cancer (Doherty et al., 2019). More than one-third of cancer patients are emotionally distressed and about one in five cancer patients express the need for psychosocial support (Bergerot et al., 2016). Anxiety is one of the leading psychological challenges associated with cancer, and all cancer patients undergo a level of anxiety at some point in their disease trajectory. This level of concern increases as patients identify how severe their condition is with the stage of presentation and how the treatment progresses (Saleh Baqutayan, 2012). Depression is another common disabling disorder that affects approximately 15%–25% of cancer patients (Nikbakhsh et al., 2014; Wondimagegnehu et al., 2019; Zainal et al., 2013).

The overall burden, severity, and type of psychological disorders vary hugely depending on the stage of cancer, type of treatment received, duration and cost of treatment, and availability of psychosocial support (Doherty et al., 2019; Emory Winship Cancer Institute, 2019; Merighi, 2016). The cancer site also plays a major role in the distinct challenges confronted by cancer patients, reflected by isolation, stigmatization, and loss of autonomy (Gorman, 2003; Merighi, 2016; Zebrack et al., 2007). Some studies identified that breast and cervical cancer patients have a higher prevalence and a severe form of these disorders. For instance, symptomatic anxiety and depression among breast cancer patients were reported as high as 32% and 28%, respectively, while among patients with other types of cancer (such as esophageal, colorectal, and thyroid), it was ranging between 3% and 15% for both disorders (Alemayehu et al., 2018; Nikbakhsh et al., 2014).

Not only clinical factors but also external environmental factors such as geographic setting, sociocultural context, and socio-economic status of the patients play a major role in the variation across the continents (Doherty et al., 2019; Grassi & Watson, 2012). Particularly in low- and middle-income countries (LMICs), the majority of cancer patients are diagnosed at an advanced stage of the disease, which contributes to the high mortality rate and poor prognosis of the disease (Martie et al., 2018; World Health Organization [WHO], 2018). According to a systematic review in sub-Saharan Africa, the percentage of patients diagnosed at Stage IV cancer ranges from 4% to 70% (Jedy-Agba et al., 2016). This may have direct implications for the type and severity of psychosocial challenges faced by cancer patients in those settings. However, the number of studies conducted in LMICs is very minimal, and the available evidence suggests that there is a difference in the psychosocial challenges and needs among cancer patients in Western countries and LMICs (Herce et al., 2014; Hubbeling et al., 2018; Travado et al., 2017). This variation might be due to differences in medical decision-making, pressure for collusion, extreme poverty, and cultural expectations about emotional and spiritual responses to severe illness (Ahmadi et al., 2019; Cain et al., 2018). In addition, differences in levels of education, occupation, values, and religious beliefs among low-income populations have been observed to influence patients’ greatest fears and concerns at the end of life (Elsner et al., 2012).

Understanding the cultural, social, and emotional experiences in LMICs is critical for improving the psychosocial and spiritual aspects of palliative care; however, specific psychosocial challenges have not been well studied in these settings, particularly in Ethiopia. Previous studies of cancer in Ethiopia were more quantitative, focusing on stage of diagnosis and survival (Abebe & Abebe, 2017; Eber-Schulz et al., 2018; Gizaw et al., 2017), awareness of cancer (Aweke et al., 2017; Chaka et al., 2018), health-seeking behaviour (Habtu et al., 2018), and screening service uptake (Geremew et al., 2018). However, the psychosocial challenges experienced by cancer patients were not well explored in a qualitative study looking at the social, cultural, and religious structure of the community. Therefore, the aim of this study is to explore the psychosocial challenges among cancer patients in Ethiopia, an LMIC with very limited structures and resources to support the identification of and clinical response to cancer patients’ psychosocial needs. The social-ecological model was used to explore the multiple levels of psychosocial challenges. This model is a theory-based framework emphasizing the interactive effects of personal and environmental factors at individual, interpersonal, organizational, community, and public policy level (Bronfenbrenner, 1977; Bronfenbrenner & Ceci, 1994). Hence, realizing the magnitude and depth of unique psychosocial challenges from different sociocultural perspectives may have paramount importance. We believe that the current study will generate evidence on how to address these specific needs of cancer patients and can be used as an input for designing context-based, effective, and applicable supportive care in resource-limited settings.

Methods

Results

A total of 28 cancer patients, 3 patient relatives, 31 health professionals, 32 community representatives, and 27 religious leaders participated in this study (Table 1). Informed by the social-ecological model, the main findings were categorized into three levels: (i) individual level, (ii) interpersonal level, and (iii) community and organizational level (Figure 1). The themes and sub-themes presented under each level of the model were identified to be similar across the different subgroups included in this study.

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Table 1.

Characteristics of Participants Involved in the IDIs and FGDs in Five Towns in Ethiopia, 2019.

Data collection method	No. of IDIs/FGDs	No. of participants	Gender	Age range (years)	Type of cancer or role of participant
FGD with cancer patients (Code P)	4	22	All females	20–70	18 breast cancers, 1 gastric cancer, 3 cervical cancers
FGD with health professionals (Code HP)	4	26	12 males, 14 females	28–60	4 surgeons, 1 pathologist, 2 gynaecologists, 1 oncology resident, 2 general practitioners, 3 psychiatry nurses, 8 surgical ward nurses, 5 midwives (cervical cancer screening)
FGD with religious leaders (Code RL)	4	27	25 males, 2 females	37–68	9 priests (Orthodox), 9 sheiks (Muslim), 7 pastors (Protestant), 2 Catholic leaders
FGD with community representatives (Code CR)	4	32	13 females, 19 males	38–74	8 HDAs, 7 kebele leaders, 6 eder leaders, 7 women representatives, 4 community leaders
IDI with health professionals (Code HP)	5	5	3 females, 2 males	27–60	2 oncologists, 2 nurses, 1 health officer
IDI with cancer patients (Code P)	6	6	All females	30–51	5 breast cancers, 1 endometrial cancer
IDI with patient relatives (Code R)	3	3	2 males, 1 female	31–45	Husband, son, and daughter

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Figure 1.

The social-ecological model of psychosocial problems among cancer patients in Ethiopia.

Discussion

This study revealed that cancer patients face several unique psychosocial challenges at different stages of the disease trajectory. These challenges occur at individual and interpersonal levels, as well as in the relationship with communities and institutional systems of care. Immediately after diagnosis, many cancer patients expressed shock, fear, and even attempted suicide when they were informed that they had cancer.

A cancer diagnosis can create a threat to one’s general sense of security and orderliness in life (Gorman, 2003). Even for early-stage treatable cancers, many people retain deep-seated fears that any cancer represents pain, suffering, and death. The emotional disturbance is highly associated with the awareness within the community, which is why it is important to differentiate and understand the prognosis of the different types of cancer. In our study, the majority of participants were breast cancer patients, with some diagnosed at an early stage of the disease. However, all of them were extremely shocked at the time of diagnosis. This might be because of lack of adequate knowledge and the perceived severity of the disease in the community (Chaka et al., 2018; Geremew et al., 2018). The majority of people are not aware of treatable cancers and assume that cancer cannot be cured even if it is diagnosed at an early stage and treatment is given to the patient: they directly link the word ‘cancer’ with death, which is why many patients suffer from severe emotional distress when they hear the word ‘cancer’. Similar findings were reported from a study conducted among adolescent cancer patients in the United States (Head & Iannarino, 2019). Another study also stated, “For many, cancer is synonymous with death, and fear is a rational and primal response” (Penson et al., 2005). This is consistent with a previously conducted study on the disclosure of cancer diagnosis in Ethiopia, which reported that both health professionals and family members tried to avoid the word ‘cancer’ and preferred to use other similar words to talk about the illness with the patient (Abebe & Abebe, 2017).

A similar type of perception towards cancer treatment was also reported from other African countries, such as Nigeria (Jedy-Agba et al., 2017), Cameroon (Kaninjing et al., 2018), Botswana (Anakwenze et al., 2018), and Ghana (Gyedu et al., 2018). This unbalanced perception might be attributed to high cancer mortality rates in Africa (American Cancer Society [ACS], 2022; Bray et al., 2018), including Ethiopia (Eber-Schulz et al., 2018; Gizaw et al., 2017). In particular, a lack of good success stories makes the situation more difficult to persuade the community that cancer patients can be cured and live longer. In addition, there is no patient support group organized by survivors, and those patients who were treated and cured from cancer usually do not go public to increase public awareness (Wondimagegnehu et al., 2023). In contrast, a large-scale study conducted among advanced cancer patients in 11 countries across the world reported that 55% of patients receiving palliative care inaccurately perceive that their cancer is curable (Yennurajalingam et al., 2018); this huge variation in perception towards the curability of cancer might be due to geographical differences (the majority of the data in the above-mentioned study was from developed countries), methodological differences, and the fact that it was hospital-based with only advanced cancer patients, compared to our study that included community representatives and religious leaders.

Depression, hopelessness, and fear of death were the other identified psychosocial challenges in this study. Several systematic reviews and explanatory studies reported that these symptoms are very common among cancer patients, either at the time of diagnosis or during the course of treatment (Doherty et al., 2019; Saleh Baqutayan, et al., 2012; Wondimagegnehu, et al., 2019; Zainal et al., 2013). However, the reported variation in the percentage and severity of symptoms might be explained by the difference in the site and stage of cancer, the type of treatment received, the social structure, and the psychosocial support received.

Although the magnitude of refusals for medical treatment was not determined in this study, our results suggested that several cancer patients refused surgical or any kind of treatment immediately after diagnosis. This finding is in line with a previous quantitative study stating that one in five cancer patients refuse surgery or discontinue medical treatment in peripheral hospitals of Ethiopia (Wondimagegnehu et al., 2022). Conversely, a study in the United States reported that only .4% and .9% of cancer patients refused surgical and radiation therapy, respectively (Aizer et al., 2014). The main reasons for refusal should be explored further, but possible explanations might include lack of trust in the medical treatment, bad experience of other patients, fear of complications, and also false beliefs (the cause of cancer is an evil spirit that should be treated with spiritual customs only).

We also found that some cancer patients discontinued medical treatment for several reasons. Financial constraint was one of the major reasons explored in this study. Due to the complex nature of the disease, cancer requires local and systemic treatment for an extended duration of time, and it is known that each type of treatment is expensive and not affordable for many cancer patients. For this reason, many developed countries use different mechanisms to minimize the financial burden on patients: subsidizing the medication cost, including it in health insurance fees or linking patients with different supporting organizations, and other means. However, in Ethiopia and other LMICs, the absence of a health insurance system (Travado et al., 2017) means that cancer patients have to pay all the diagnostic and treatment costs from their own pockets. According to a study in Cameroon, only 1% of cancer patients used private insurance and 1% received support from the government to pay for treatment (Price et al., 2012). In addition, because of the limited number of cancer centres in Ethiopia, the majority of cancer patients and their caregivers need to travel to the capital city, which exposes them to additional transport and accommodation costs. Such extra costs exacerbate the financial stress on the whole family and can even make treatment impossible. The above-mentioned study found that 23% of patients travelled more than 7 hours to reach a cancer centre and that 40% of patients spent more than $200 on a single round of chemotherapy (Price et al., 2012). Similarly, a study in Ethiopia found that 74.4% of patients experienced catastrophic health expenditure, with a mean overall cost of $2366 per patient. Chemotherapy was one of the main reasons for such high expenditure (Kasahun et al., 2020). Another study in Malawi reported that around two-thirds of cancer patients frequently request financial and food support, suggesting a high prevalence of economic and psychosocial needs in such settings (Herce et al., 2014).

This study also identified that cancer patients discontinue medical treatment because of pressure from the community to visit traditional healers and religious places. Traditional treatment is still considered to be one of the effective treatment options for many chronic illnesses in LMICs, especially in Africa. Several studies conducted in different parts of the continent reported that many cancer patients took traditional medicine or at least tried it once (Anakwenze et al., 2018; Jedy et al., 2017; Kaninjing, 2018).

Even though spirituality is one of the components of psychosocial support recommended for patients with chronic illness, our study found that religious beliefs and practices may negatively influence cancer patients either to accept and start treatment immediately after diagnosis or to discontinue medical treatment. Similar studies in Nigeria and Ghana reported that there is a significant association between religion and late-stage diagnosis among breast cancer patients (Gyedu et al., 2018; Jedy et al., 2017). These studies revealed the impact of religion on screening practice, early diagnosis, and adherence to treatment in cancer care. Another qualitative study from India described the link between cancer care and religion from a different angle, looking at the impact of cancer on religion. The participants reported that cancer affected their faith and even changed their religion while few became closer to God due to their illness (Elsner, 2012). Similar findings were reported from Malaysia, with cancer considered to be a lesson from God and suffering seen as educational theodicy: getting closer to God (Ahmadi et al., 2019). Our study also explored the link between faith and the curability of cancer and found that the Ethiopian community strongly believed that someone can be cured from cancer if he/she has a strong faith in God/Allah and properly practices the religious rituals. Previous studies conducted in different parts of the country also came up with similar findings concerning religious practices and the utilization of traditional medicine among cancer patients (Chaka, 2018; Dereje et al., 2020; Gebremariam et al., 2019). The misconception by patients, their family, and community that cancer is not curable negatively affected patients’ acceptance of treatment and, as a result, caused the patients to look for alternative approaches.

Nevertheless, cancer patients in Ethiopia receive social support from family, friends, and significant others; our results also revealed that they are forced to hide themselves from social activities due to peoples’ reaction around them. The community members are unintentionally disrupting patients’ emotional well-being assuming that they are providing social care. Similarly, a qualitative study done in Liberia narrated about the wholistic nature of cancer patients and how the interaction of various environmental, social, and interpersonal factors attribute the psychosocial well-being of cancer patients (Lusaka et al., 2023).

The findings of this study suggest the need to design, integrate, and provide culturally acceptable psychosocial services in the routine cancer care of Ethiopia. Challenges identified at individual, interpersonal, and community levels may offer guidance on how and where to intervene and who to involve in the establishment and implementation of a supportive care system in the continuum of cancer care. Therefore, an educational session on how to approach and provide emotional and other supportive care should be given for family members/care givers and the general community at large. According to a recent scoping review, providing different types of supportive services in less-resourced settings, even when health systems are fragmented and fragile, can improve mental health, physical health, and the quality of life of cancer patients (Cabanes et al., 2022). Even though the importance of psychosocial services for cancer patients has been well proven, previous study in Ethiopia showed there are no structured psychosocial services for cancer patients (Wondimagegnehu et al., 2023). The need for increased community engagement, primary palliative care capacity development, and the support of local and national decision-makers is also emphasized to expand supportive care through considering the various dimensions of patients (Lusaka et al., 2023). Similarly in Ethiopia, attention should be given for provision of comprehensive palliative care as majority of cancer patients are diagnosed at advanced stage of the disease and require various form of psychosocial services that should be integrated in the routine cancer care and existing social structure.

One of the strengths of this study is fulfilling the principle of maximum variation, in that the data were collected from cancer patients, patients’ relatives, health professionals, community representatives, and religious leaders, which enhanced the completeness and representativeness of the data. The other strengths of the study are the large sample size, the use of a mixed data collection technique (both IDIs and FGDs), and the study being conducted in both urban and rural areas.

One limitation of this study is that the majority of the participants involved in this study were breast cancer patients, which slightly skewed our participants to more females than males. However, an attempt was made to include other types of cancers, such as gastric, endometrial, and cervical cancer. Another limitation of the study is that traditional healers were not included, even though we initially planned to involve them; we approached two herbalists in Butajira, but they were not willing to be interviewed.

Conclusion and Recommendation

In this study, at an individual level, emotional distress, denial, and suicidal attempts were the most common challenges immediately after diagnosis, while depression, hopelessness, and fear of death were identified as problems during the course of treatment. At an interpersonal level, we found that cancer patients had strong social support from family members and close friends. However, the involvement of family members in major decisions had a negative influence on adherence to treatment.

Due to this and several other reasons, many cancer patients refused or discontinued treatment and visited religious places or traditional healers, returning back to the health facility at an advanced stage of the disease. Even though there was no stigma or discrimination in the community, this study also revealed that the majority of cancer patients isolated themselves from social gatherings because they did not want to talk about their disease.

Therefore, psychosocial services that include individual counselling and psychoeducation should be provided for cancer patients in health facilities. Health professionals need to routinely screen cancer patients for comorbid diseases such as depression and anxiety and provide appropriate emotional support as needed. Importantly, family and close friends need to be supported and counselled about the treatment in order to avoid contradictory advice being given to the patients. Health education programmes should be organized to improve patient and public awareness that cancer is a curable/treatable disease, using a patient support group, such as cancer survivors, to improve the emotional, psychosocial, and clinical outcomes of cancer. Religious leaders and traditional healers should be involved and work collaboratively with health professionals in the provision of psychosocial services for cancer patients; they should also be informed about the treatment concepts of common cancers and the importance of timely management. In order to gain a complete picture of the problem, we recommend a larger study that includes traditional healers and patients with different cancer types who may have unique psychosocial problems depending on the anatomic site of origin.