Characteristics, treatment outcomes and experiences of COVID-19 patients under home-based care in Kapelebyong district in Uganda: a mixed-methods study

Background A rapid increase in community transmission of COVID-19 across the country overwhelmed Uganda’s health care system. In response, the Ministry of Health adopted the home-based care strategy for COVID-19 patients with mild-to-moderate disease. We determined the characteristics, treatment outcomes and experiences of COVID-19 patients under home-based care during the second wave in Kapelebyong district, in eastern Uganda. Methods We conducted a sequential explanatory mixed-methods study. We first collected quantitative data using an interviewer-administered questionnaire to determine characteristics and treatment outcomes of COVID-19 patients under home-based care. Cured at home was coded as 1 (considered a good outcome) while being admitted to a health facility and/or dying were coded as 0 (considered poor outcomes). Thereafter, we conducted 11 in-depth interviews to explore the experiences of COVID-19 patients under home-based care. Multivariable logistic regression was used to assess factors associated with poor treatment outcomes using Stata v.15.0. Thematic content analysis was used to explore lived experiences of COVID-19 patients under home-based care using NVivo 12.0.0 Results A total of 303 study participants were included. The mean age ± standard deviation of participants was 32.2 years ± 19.9. Majority of the participants [96.0% (289/303)] cured at home, 3.3% (10/303) were admitted to a health facility and 0.7% (2/303) died. Patients above 60 years of age had 17.4 times the odds of having poor treatment outcomes compared to those below 60 years of age (adjusted odds ratio (AOR): 17.4; 95% CI: 2.2–137.6). Patients who spent more than one month under home-based care had 15.3 times the odds of having poor treatment outcomes compared to those that spent less than one month (AOR: 15.3; 95% CI: 1.6–145.7). From the qualitative interviews, participants identified stigma, fear, anxiety, rejection, not being followed up by health workers and economic loss as negative experiences encountered during home-based care. Positive lived experiences included closeness to friends and family, more freedom, and easy access to food. Conclusion Home-based care of COVID-19 was operational in eastern Uganda. Older age (> 60 years) and prolonged illness (> 1 months) were associated with poor treatment outcomes. Social support was an impetus for home-based care.


Background
Uganda experienced the second wave of COVID-19 between April and September 2021. The proportion of patients with severe disease in the second wave was twice that observed in the first wave, which overwhelmed the Ugandan health system [1]. Due to this, the ministry of health switched from the strategy of health facility isolation of all COVID-19 confirmed patients to home-based care strategy [2]. Under the home-based care strategy, mild-to-moderate COVID-19 patients are provided with the required care at the patient's residence by a care giver who may be a family member, a friend or a member of the local community while cooperating with the advice and support from trained health workers [3]. This was consistent with the World Health Organization (WHO) recommendations for home-based care for newly confirmed or suspect COVID-19 patients having no symptoms or having mild illness [3].
The high population density, poor housing, overcrowding, poor infrastructure and inadequate access to water and sanitation in many sub-Saharan communities became major constraints for effective home-based care of COVID-19 patients [2]. Furthermore, the unique socio-cultural context, beliefs and stigma associated with life threatening infectious diseases on the continent is a challenge to home-based care [2].
Despite evidence of successful home-based care for management of COVID-19 in many European countries [4,5], there is limited information on the characteristics, treatment outcomes and experiences of COVID-19 patients under home-based care in sub-Saharan Africa. This information could be used to develop evidencedbased recommendations for home-based care of COVID-19 patients in sub-Saharan Africa. This study determined the characteristics, treatment outcomes and lived experiences of COVID-19 patients under home-based care in Kapelebyong district in eastern Uganda.

Study design
We conducted a sequential explanatory mixed-methods study, where quantitative data were collected and analyzed first. This was later followed by qualitative data, which was collected to better understand the experiences of participants under COVID-19 home-based care.

Study setting
The study was conducted between November 2021 and February 2022 in Kapelebyong district in the eastern region of Uganda bordered by Napak district to the north, Katakwi district to the east, Amuria district to the south, Alebtong district to the west and Abim district to the north-west. Kapelebyong has a total population of 168,242 people. Of these, 94,578 (56.2%) are female while 73,664 (43.8%) are male. Kapelebyong district has one constituency of Kapelebyong, 11 sub-county level administrative units, 55 parish level administrative units and 327 villages. The district has the district task force and the sub-county task force for coordination of COVID-19 management.
Kapelebyong has 14 health facilities; 1 health center (HC) 4, 3 HC3s (2 Government, 1 private not for profit), 9 HC2s and 1 Nursing home which is private for profit. Services offered include; out patients' department, maternal and child health, laboratory services, HIV Services, family planning and theater services for only Kapelebyong HC4 with a bed capacity of 85. Health workers from HC3s and HC4 were trained and equipped with knowledge on diagnosis and management of COVID-19 patients under home-based care. Only patients that did not require admission at the time of diagnosis based on a clinician's assessment were put under home-based care. All COVID-19 patients that needed admission were referred to Soroti regional referral hospital.

Study population
All COVID-19 patients under home-based care in Kapelebyong district were eligible for this study. COVID-19 patients of all age groups, both male and female diagnosed using a PCR Test or a rapid diagnostic test, put under home-based care in Kapelebyong district and gave informed consent were included in this study. We excluded COVID-19 patients who were too sick to talk or those with severe mental disability.

Sample size
We sampled all COVID-19 patients under home-based care in Kapelebyong district that met the inclusion criteria and this gave us a sample size of 303. This sample size results in an absolute precision of 1.6% to 5.6%, i.e., the Conclusion: Home-based care of COVID-19 was operational in eastern Uganda. Older age (> 60 years) and prolonged illness (> 1 months) were associated with poor treatment outcomes. Social support was an impetus for homebased care. Keywords: Home-based care, COVID-19, Uganda, Treatment outcome, Stigma, SARS-COV-2

Study variables
The dependent variable was treatment outcomes of COVID-19 patients under home-based care. These were divided into good outcome used to define patients that cured at home and poor outcome used to define patients that were admitted to a health facility and/or died while under home care. The independent variables were; socio-demographic factors (age, marital status, tribe, educational level, income levels, occupation, and religion), presence of comorbidities, vaccination status, number of vaccination doses, monthly family income, duration in care and follow up by health workers. We calculated wealth tertiles from an asset based index using principal component analysis. The following assets were considered: radio, television, mobile phone bicycle, motorcycle, car, computer, permanent house and piped water.

Data collection
We used two trained research assistants to collect data electronically using an interviewer administered questionnaire designed in Kobo Toolbox (Cambridge, Massachusetts, USA). All participants were followed at their homes and face-to-face interviews were conducted in a secure environment that allowed free interaction between the participant and the interviewer after obtaining written informed consent from the participant. An abstraction tool prepared for the study was used to collect data about the deceased patients from their medical records.

Statistical analysis
We summarized categorical variables as proportions and continuous variables as mean (standard deviation). We computed described analyses to determine the percentage of home-based care patients that cured, those that were eventually hospitalized, and those that were reported as dead at the time of interview. Dead patients were excluded from further analyses since they were not alive to be interviewed. We conducted multivariable logistic regression to determine the factors associated with poor treatment outcomes among COVID-19 patients under home-based care while controlling confounders. Factors with a p-value of less than 0.2 at bivariable analysis, and those known to affect treatment outcomes of COVID-19 patients from literature were included in the multivariable analysis. Adjusted odds ratios (AOR), 95% Confidence interval and p-values were calculated at a statistical significance at a p-value < 0.05. We used Stata V.15.0. (StataCorp LLC, College Station, Texas, United States of America) for analysis.

Qualitative component Participants' selection
We purposively selected 11 participants among those that were part of the quantitative interviews to explore their experiences while under home-based care. Participants were followed at home.

Data collection and sampling
We collected qualitative data on the experiences of patients under home-based care in Kapelebyong district using an in-depth interview guide. An interviewer that is experienced in conducting qualitative interviews conducted the face-to-face in-depth interviews in a secure environment that allowed free interaction between the interviewer and the participant. Probing questions were used to get rich information on the issues that arose during the discussions. The interviews would take between 20 and 30 min. With permission from the participants, the interviews were audio recorded, transcribed verbatim and translated into English for those conducted in Ateso.

Data analysis
We used thematic content analysis to analyze the data. The analysis followed a five-step process. First, we read through the transcripts and became familiar with the data. Secondly, we organized data in a meaningful way and generated the initial codes. Once the data had been sufficiently coded and saturation reached, we identified themes. We then reviewed and modified themes and put together all data relevant to each theme. Data were managed in NVivo 12.0.0 (QRS International, Cambridge, MA). Examples of meanings units, codes, categories and themes from qualitative content of interviews about experiences of COVID-19 patients under home-based care are shown in Table 1.

Quantitative results
A total of 303 participants out of a population of 309 participants were interviewed. Since two of these participants had died, data on participant characteristics were only obtained from 301 participants. Majority [89.4% (269/301)] were aged less than 60 years, the mean age ± standard deviation was 32.  Tables 2  and 3.  (Fig. 2).

Qualitative component
Our findings are organized into five main sections, experiences living with COVID-19 and experiences related to interaction with the health care settings, coping mechanism, interaction with people in the community, perception towards homecare management, and recommendations to improve COVID-19 home-based care (Table 5).

Loss of economic and social life
Participants felt burdened by the cost of COVID-19 care. They argued that being at home without working during the isolation period brought loss of personal and family income. One participant noted that:

Stigma associated with a COVID-19 patient label
Participants reported having experienced stigma as they sought services from the health facilities. They argued that the stigma was from health workers as well as from other people who had also gone to seek medical services from the health facilities. The stigma was in the form of health workers not attending to COVID-19 patients or suspects, other patients not willing to share

Feeling isolated
The feeling of isolation was characterized the interaction that was there with friends, family and community members. They argued that other community members including their close friends didn't want to associate or be in close contact with them because of their positive COVID-19 status due to fear of them acquiring COVID-19 disease. A 30-year-old male told us,

… "one thing I can't forget is how my friends left me just because of Covid. I was really left out" [P03, 30 years male, IDI].
As much as the participants faced isolation and stigma in different forms, even their caretakers had similar experience from the community as two participants explained, "In fact, every person who lived with me in the same compound was stigmatized every time they tried to go to the shops to buy something. Even when they

Coping mechanism
The COVID-19 pandemic created a number of disruptions, fear, anxiety, uncertainty and economic loss to the patients. Our participants described a number of strategies they used to cope with challenges they encountered with COVID-19 and home-based care.

Visits from friends and family
Participants felt better with other people visiting and interacting with them and as a 60-year-old female told us,

Engaging authorities
We found that some participants during their time in home care management; they were rejected and stopped from roaming around by the communities. The caretakers too were subjected to these same discriminatory feelings, as they were denied access to water and other things. In those cases, they had to engage the authorities to come and intervene. A participant told us,

Use of preventive measures
Participants argued that they had to separate themselves from the family as a way of preventing other family members from getting infected since they had fear of infecting others. They also reported wearing masks and keeping social distance as a way of preventing other people from getting infected with COVID-19.
…"we actually had to separate ourselves. Those who were sick stayed in a different room from those who were negative and we also never shared meals. We

Praying to God
Participants prayed to God for healing and support during that difficult time when they were isolated at home. They believed it was only God who could heal them and save them from the suffering brought by COVID-19. One of them said,

Engaging in exercise
Others decided to keep themselves busy doing things that would keep them relaxed and busy like exercising. They reported that this was also part of the advice given to them by health workers, to do exercise while at home. One mentioned, "I was encouraged to do exercises like jogging but I would go to the garden because that's also vigorous exercise and I liked it. I also did jogging and gardening and that's what helped me recover faster.
[Laughs] I knew that was a minor disease to me" [P01, 35years, female, IDI]

Use of complementary medicines
There was increased use of traditional and complementary medicines such as herbs, ginger, nim tree leaves, steaming and fruits. They reported that they were advised to do this by health workers to boost their immunity and help fight COVID-19. They said even their friends advised them to use herbs and steaming to quicken their recovery process at home.

…"What I wouldn't forget was the first thing the doctors told me, they said that whichever thing I eat, I would have vegetables and fruits to boost my body strength to fight COVID-19" [P11, 60years, female … IDI]
… "I bought the drugs but also took some local herbs like nim tree leaves, I steamed, I also used ginger" [P06, 37 years, male …IDI]

Perception towards home-based care
Many participants believed being managed at home is better than being at the hospital. They argued that at

Discussion
In our study, almost all (96%) COVID-19 patients under home-based care had a good outcome. This could be because most of the cases managed at home were of milder COVID-19 [6]. Our findings are similar to those observed among home quarantined patients with COVID-19 in China, where 91.9% of COVID-19 patients had a good treatment outcome [5]. We also found out that the likelihood of a poor treatment outcome increased with age. This finding was not surprising. Other studies have also revealed that older patients were more likely to have poor treatment outcomes compared to the younger ones [7][8][9][10]. This could be related to the fact that the body's immune defense system deteriorates with age hence older persons are more likely to develop severe disease and poor treatment outcomes from COVID-19 infection [11]. Our data also revealed that, patients who spent more than a month in home-based care had higher odds of poor treatment outcomes compared to those who spent less than a month in home-based care. This is similar to findings from a study conducted in china that also found out that patients who spent a longer time in homebased care had poor treatment outcomes [5]. Spending longer time in home-based care could signify existence of disease complications previously not detected.

Experiences of COVID-19 patients managed under home-based care
Our findings show that COVID-19 patients managed under home-based care, experienced stigma and isolation. Our findings on stigma and isolation experienced by COVID-19 patients managed at home, can be explained using the theory of social stigma, as described by Erving Goffman [12]. Stigma is a phenomenon, whereby an individual with an attribute which is deeply discredited by their society is rejected as a result of the attribute [12]. Goffman described stigma as a process by which the reaction of others spoils normal identity [12]. In our findings having COVID-19 was an attribute discredited by the society in which these patients were managed hence they were stigmatized and isolated. This finding is in line with a study conducted in Pakistan that found that quarantined individuals were more likely to report stigmatization and social rejection [13].
The anxiety and fear surrounding COVID-19 disease was precipitated by the general awareness that COVID-19 is a deadly disease. A good number of participants expressed feeling of fear of developing severe disease or death. Various news outlets such as radio stations and television channels exacerbated the fear. For instance, high numbers of COVID-19 infections and mortalities in Europe and America were being reported and this could have contributed to the fear and anxiety our participants experienced [14]. The fear can also be understood using the death anxiety theory which states that many of people's daily behaviors consist of attempts to deny death and to keep their anxiety under strict regulation [15]. The death anxiety theory suggests that as an individual develops mortality salience, or becomes more aware of the inevitability of death, they will instinctively try to suppress it out of fear [15]. Our findings are in line with a study in southeast Ethiopia which found out that being an urban resident and access to news about COVID-19 disease severity and death increased the level of anxiety among COVID-19 patients by 16.8% [16].
Participants also suffered economic loss. The effects of isolation and restriction of movements throughout the entire treatment period led to loss of personal and family income in patients who were without any formal employment. Many participants alluded to losing their personal and family source of income due to their sickness. The economic loss experience was reported more among families that had both husband and wife (key bread earners) isolated. In comparison, COVID-19 management strategies have been associated with economic consequences worldwide [17]. For example, a study done in Uganda found that COVID-19 public health restrictions have a severe impact not only on older adults, but also on the whole family in Uganda [18]. Governmental strategies to contain the virus need to provide more support to enable people to get basic necessities and live as normal a life as possible.
We found that patients, who were believers, resorted to their faith as they tried to cope up with their sickness during their time in home-based care. This could be because most people believe that there is nothing impossible with God. Similarly, a study done in South Africa on spiritual care of COVID-19 patients found out that spiritual care is necessary to provide a means of coping and wellbeing for families, patients and health workers during the COVID-19 pandemic [19]. Getting support from the family members was also one of the most important coping strategies for patients under home-based care. They provide psychosocial support, food, drugs, performing activities of daily life, monitor patient's health at home, encourage them to adhere to treatment and they contact health workers when need arises. This finding is in line with a study by Rahimi et al. 2021 where he reported that the family caregivers are reducing the increased burden of COVID-19 on health and social care systems [20]. As opposed to hospital care, where you are under the care of a nurse or a doctor, participants found being taken care of by a family member to be key to their treatment outcomes at home. This finding was in line with previous study conducted in the United Kingdom, where homebased care was compared to hospital-based care, which found home-based care to hold a slighter advantage in terms of recovery outcomes for older patients and surgical patients [21]. In this study, caregivers support was attributed to older patients' recovery at home.

Strengths and limitations
This was the first study, to the best of our knowledge, that investigated the treatment outcomes of COVID-19 patients managed under home-based care in rural Uganda, and it can be used to improve the quality of home-based care in the country. We conducted a mixedmethods study, combining both quantitative and qualitative methods of data collection. The use of the two approaches in this study increases the rigor, trustworthiness and angles at which we investigated the outcomes. The qualitative findings helped us make meaning of the quantitative results. For instance, the in-depth interviews allowed us to capture participants' lived experiences under home-based care. To ensure trustworthiness in this study, we ensured that after transcribing the transcript and analyzing data, the results were read to a few participants for validation. The use of two coders also helped us to increase the coding rigor and credibility of our results. Since we used the district register of all patients managed at home, and included 303 participants out of a population of 309 patients in this list, we believe selection bias could be minimal in our study. Since we investigated hard outcomes such as death and hospitalization, misclassification of the outcome is probably minimal in the study. We also visited the patients at their homes and this reduced the potential of selection bias. However, it is possible, that some patients did not present to any health facility, and hence our results, apply to only patients who got COVID-19 and presented to a health facility. We could have increased this rigor by verifying with hospital records and village death registers but unfortunately this was not done. For information bias, we