Availability and Utilization of Psychosocial Services for Breast Cancer Patients in Addis Ababa, Ethiopia: A Mixed Method Study

Purpose: Although psychosocial services have substantial impact in cancer care, the availability and utilization of these services have not been well-studied in Sub Saharan Africa. Therefore, we explored the types of psychosocial services available for breast cancer patients in Addis Ababa, Ethiopia. Methods: A mixed method study was conducted using a cross-sectional survey involving 428 breast cancer patients, followed by a qualitative study. A total of nine in-depth interviews (IDIs) were conducted with four breast cancer patients and ve key informants using two separate interview guides. In addition to descriptive statistics, logistic regression was done to identify factors associated with provision of psychosocial services. Thematic analysis was used for the qualitative data using NVivo 12 plus software. Results: Only 47 (11.1%) patients received psychosocial services, either in the form of counseling, emotional support or provision of information. Health professionals reportedly provided such services along with their routine activities, and patients predominantly received social/emotional support from family members, friends and colleagues. There were no well-structured counseling service, emotional support or group discussion sessions for breast cancer patients in these health facilities. The main reasons for not providing these services were high patient ow/workload, inadequate space, lack of training and not having qualied professionals to organize and deliver psychosocial services in those hospitals. Conclusions: only one in ten breast cancer patients received psychosocial services from health professionals, and the services were not delivered in a structured way. Therefore, psychosocial services should be integrated both in private and government health facilities of Ethiopia.

Nevertheless, cancer care systems in many low-and middle-income countries (LMICs) do not even address the current burden of cancer due to poor screening services and poor development of public health services. In addition, ignorance, unhealthy cultural and spiritual beliefs, and denial of diagnosis are common problems that create many challenges in terms of fewer treatment options, presentation at advanced stages of disease and pain management, resulting in a greater need for psychosocial and palliative care. However, psychosocial services are not widely available in LMICs, especially in Africa [24,28]. One of the major challenges for not implementing existing clinical practice guidelines for psychosocial care is most of these guidelines have been designed primarily for well-resourced settings, considering their culture and local context [29,30].
So far, few studies have been conducted on the implementation of psychosocial services in LMICS. A qualitative study done in Indonesia reported that breast cancer patients obtained information about their diagnosis and treatment from the doctors in the hospital. However, other types of psychosocial services, such as counseling and emotional support, were not provided for the patients [31]. According to a study done in Botswana, the majority of cancer patients received social support from family members and friends. However, the study revealed that there is a gap in the provision of psychosocial service due to understaffed facilities and both poor referral communications and scheduling systems [32]. Similarly, our previous study in Ethiopia revealed that breast cancer patients received social support from family members, friends and signi cant others [33]. However, the provision of psychosocial services for breast cancer patients at the health facility level has never been explored before. Therefore, this study will explore the availability and receipt of psychosocial services for breast cancer patients in selected hospitals of Addis Ababa, Ethiopia.

Study design and Place
A sequential mixed study design [QUAN (qual)] was employed; in the rst phase of the study, a cross-sectional study design was used and quantitative data was collected from 428 breast cancer patients at two large tertiary referral hospitals and ve private oncology clinics. Subsequently, a small-scale qualitative approach was used for further exploration and validation of the quantitative ndings. Ethical clearance was obtained from the Research Ethics Committee (REC) of the School of Public Health and Institutional Review Board (IRB) of the College of Health Sciences, Addis Ababa University.

Study participants and sample size
The sample size for the quantitative part of the study was calculated using these assumptions: 95% con dence interval (CI), margin of error (d) = 5%, 40.3% prevalence of depression [34] and 20% non-response rate. The nal calculated sample size was 444. The eligibility criteria were all pathologically con rmed breast cancer patients above 18 years of age and who were undergoing treatment in those selected health facilities.
In the qualitative part of the study, IDIs were conducted with four purposively selected breast cancer patients and ve health professionals (two oncologists, two BSc nurses and one health o cer) who were working in the respective oncology departments. An attempt was made to achieve the principle of maximum variation of participants by considering type of health facility, duration of diagnosis, age and place of residence.

Data collection and tools
For the quantitative part of the study, a structured questionnaire was developed and adapted to our context after reviewing literature; sociodemographic information was included. Breast cancer patients were considered as receiving psychosocial services if they reported having received any kind of counseling service, emotional support or information/educational materials by health professionals working in the current health facility.
For the qualitative study, two separate interview guides were prepared for IDIs with patients and key informants. The principal investigator and a research assistant who has experience in qualitative research conducted all the interviews.
Daily debrie ngs were held on emerging thematic areas, and the data collection continued until the theoretical saturation level was reached. All the interviews were audio recorded, and notes were taken during the interviews. The data was organized and appropriately labeled immediately after each interview. Subsequently, all recorded interviews were transcribed and translated verbatim.

Data analysis procedures
The quantitative data was organized in Epi data software and analyzed using Statistical Package for Social Sciences (SPSS) version 25. Bivariate logistic regression analysis was done for each independent variable with receipt of psychosocial services. The crude and adjusted odds ratios (COR and AOR) with 95% CI were presented. The data analysis for the qualitative study was initiated in the eld simultaneously with the data collection process. All transcribed documents, eld notes and re exive memos were entered into NVivo12 plus software. Each statement and word were coded line by line based on the stated objectives.
Thematic analysis was used to categorize and explain the emerging thematic areas under each objective. The ndings were guided and described using the tiered intervention model, which provides a framework to review existing services within the community, identify gaps in current service delivery, and for implementing psychosocial care using a communitybased approach [35].

Result
The result of this study is organized and presented in three parts. The rst section describes ndings from the qualitative study highlighting the types and location of psychosocial services available for breast cancer patients.
The second section deals with the ndings from the quantitative survey describing with the proportion of women who received psychosocial services in those health facilities. The analytic result of the survey was conducted among 428 patients, with a response rate of 96.4%. The third section narrates the reasons for not providing psychosocial services for breast cancer patients in those facilities. The psychosocial services available for breast cancer patients were described and categorized in to two main sub thematic areas: i) from the community and ii) from the health facilities. In those visited health facilities, there was no structured way of disclosing breast cancer patients. But most of the time, the physician who made the diagnosis was the one who disclosed the diagnosis to patients; this was also reported by patients.
"There was a doctor who did the diagnosis and disclosed me as I have cancer." (P04: 35 years) "The doctor is the one who handles most of these issues using the short time he has for examining all the patients. He provides the counseling service based on patient's knowledge and condition." (HP04: Health o cer, private) On the other hand, there were breast cancer patients who accidentally got disclosed during the waiting time or when they were linked to an oncologist. Sometimes cancer patients remained undisclosed about their status. Respondents mentioned caregivers who informed the health professionals not to tell the patient about cancer because of fear of discontinuing the treatment and in order to prevent hopelessness.
"They didn't tell me anything about the disease except telling me that I will be linked to another doctor …Then, I heard from other patient beside me that we are waiting for a cancer doctor." (P01: 36 years) "Sometimes, patients bring their pathology result without being informed about their diagnosis...the family members insist us not to tell them and the doctor will not say anything." (HP03: BSc nurse, private) All breast cancer patients who participated in the qualitative study reported that they did not receive any counseling services. They even mentioned that they were not properly disclosed and the health professionals didn't provide any emotional support or counseling at the time of diagnosis.
"The way he disclosed me was really shocking. Then, I isolated myself from any kind of medical treatment. The doctor told me as its breast cancer, and as there is no option other than removing my breast. I even asked him about the cause and he said we don't have time to discuss about this; rather we have to focus on the solution. That's all what he said to me." (P04: 35 years) In contrast, the health professionals reported that they were providing counseling services and emotional support for cancer patients as much as the situation allowed them. However, except having short and brief discussions with each patient, there were no structured psychosocial services, which included counseling, emotional support and discussion sessions with cancer patients either individually or as a group. The physicians and nurses who were working in the oncology unit provided these services along with their other routine tasks.
"We do not have such structured system, even the psychological support and counseling is not provided adequately. But we are trying our best and we need both counselors and clinical psychologists." (HP01, Oncologist)   (Table 3).  Reasons for not providing psychosocial services in these health facilities were also explored in the qualitative part of the study, and several justi cations were given by the key informants. These included shortage of staff, high workload and not having an assigned person who will deliver these services in an organized way.
"The main problem is staff shortage and high patient ow…umm….we do not have a staff who is assigned for psychosocial activities…" (HP04: BSc nurse, government) In addition to this, there was high patient ow in these health facilities due to the limited number of cancer centers in the country. Therefore, it was di cult for the health professionals to spend more time with each patient and address their emotional and psychosocial needs.
"I don't know the reason, but I think it's because of high patient ow. Let alone to spend some time with you and discuss about your disease condition, the medication by itself is given in hurry." (PO2: 42 years; BC patient) "…because of the high patient ow, doctors are forced to see many patients per day specially in government hospitals." (HP02: Oncologist)  [37] and Botswana [32], which reported that cancer patients often received psychosocial supports from their family members and friends.
Regarding disclosure of cancer diagnosis, several guidelines recommended that all cancer patients should be well-informed about their diagnosis, treatment options and future prognosis of the disease [23][24][25]38]. However, our study found that there were some breast cancer patients who were not even aware of their diagnosis. A previous study conducted in Ethiopia also reported a similar nding concerning lack of disclosure of cancer diagnosis among breast and cervical cancer patients [39]. This nding is not only in Ethiopia but also supported by a quantitative study conducted in Egypt that revealed around 15% of cancer patients were not aware of their diagnosis, and only their family members were aware of their diagnosis [40].
The main reason assumed by interviewees for not disclosing to these patients was the pressure of relatives on caregivers to prevent hopelessness and discontinuation of treatment. This reason is also consistent with a study done in India, which reported that the majority of caregivers preferred non-disclosure of cancer diagnosis and prognosis to their patients [41].
Poor disclosure of cancer diagnosis in developing countries might be associated with poor educational attainment [40], preference of traditional medicine, old age and having other chronic illnesses [42].
In this study, majority of breast cancer patients reported that they didn't receive counseling services in their current health facility. However, counseling services were one of the major components of psychosocial services that are being delivered in developed countries [11, 23-26, 43, 44]. According to the cancer survivorship plan of the Institute of Medicine (IOM), a minimum of care and information that should be given for each cancer patient includes provision of information about the type of tests, results, tumor characterization, and treatment details, including type, combination of treatment, duration, side effects and regimen [10]. Nevertheless, patients in this study mentioned that they didn't get all the necessary details about their diagnosis and treatment, including the number of chemotherapy cycles prescribed for them. They also stated that they never received educational materials, either brochure or lea ets. Similarly, many African countries do not provide such comprehensive psychosocial services, including counseling and provision of information materials for cancer patients [26,28,45]. The possible explanation for this variation in the provision of psychosocial services between developed and developing countries is lack of resources, whether it be skilled man power, infrastructure, materials and so on. Furthermore, this might also be associated with the perception of health professionals towards the capacity of mostly illiterate patients to comprehend and appropriately interpret all these details.
Those patients who are residents of Addis Ababa were two times more likely to receive psychosocial services compared to others who were residing outside of Addis Ababa. This nding can be explained by the fact that people living in urban areas probably have better health information and therefore insist on obtaining psychosocial services. This nding is supported by a study conducted in Egypt, which revealed that educational level and place of residence were signi cantly associated factors with regard to disclosure and provision of psychosocial services [40].
A main strength of the quantitative study is the large sample size and inclusion of private and government hospitals in Addis Ababa, leading to a broad picture of the situation. Maximum variation of responses was achieved through including newly diagnosed and recurrent cases. During our qualitative study, collecting information from patients and also health professionals increased the generalizability of the study. The major limitation of this study was that we only conducted IDIs, and it might be helpful if other data collection techniques, such as focus group discussion (FGD) were used in order to triangulate our ndings.

Conclusions
In this study, psychosocial services were barely found for breast cancer patients, either in the form of counseling services, emotional support or provision of information. Except provision of irregular type of emotional support and counseling services for the patients, there was no structured and well-organized psychosocial services in those health facilities. High patient ow, workload, inadequate space and lack of trained health professionals were the major reasons for not providing psychosocial services. The key informants mentioned that psychosocial services are one of the neglected areas in cancer care, which requires due attention. It's recommended that psychosocial services should be integrated in routine cancer care, at least at secondary and tertiary hospitals in the country. It's also indicated that the service should be tailored in the local context through considering various sociocultural factors, educational attainment of the community and available resources in the country. Further studies are required to identify other barriers in provision of this service and in order to explore the psychosocial challenges and needs among all cancer patients in different parts of the country. University. Written informed consent was obtained from all participants. The con dentiality and anonymity of the participants was maintained. All analysis methods were performed in accordance with the Declaration of Helsinki.
Consent for publication: Not applicable.
Availability of data and material: The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.
Competing interests: The authors declare that they have no competing interests.
Funding: This study is supported by the Department of Psychiatry, College of Health Sciences, AAU. The funding body didń t get involved in the design of the study and collection, analysis and interpretation of data and in writing the manuscript.

Authors' contributions
All authors conceived and designed the study. AW and SH conducted the IDIs. AW, SH, WA and AA performed the data analysis and interpretation of the ndings. AW and WA drafted the manuscript. BZ, EK, AA and ST were actively involved in data interpretation and critically reviewed the manuscript. All authors read and approved the nal manuscript.