Prevalence of Anxiety and Depression Among Patients in a Palliative Care Setting During the COVID-19 Pandemic: A Mixed-Methods Cross-Sectional Study

Abstract

Background

COVID-19 is a new disease with high transmission and mortality rates and can cause or exacerbate a myriad of psychological sequelae, particularly in patients with underlying serious illness. Palliative care patients’ experiences have been widely studied, but research on their experiences during COVID-19 pandemic is scanty.

Aim

To determine the prevalence of and factors associated with anxiety and depression among palliative care patients and explore palliative care patients’ experiences during the COVID-19 pandemic.

Materials and Methods

This cross-sectional mixed-methods study used the Hospital Anxiety and Depression Scale (HADS) and face-to-face audio-recorded interviews to collect data from participants between April and May, 2022. Quantitative data were analysed using STATA v.17. Chi-square test and multivariate logistic regression were performed to examine factors associated with depression and anxiety. Qualitative data were analysed using thematic analysis.

Results

Of the 96 participants, 74% (n=71) were female. Patients who earned ≥100,000 Ugandan shillings (OR=0.18, p=0.026, CI 0.040–0.818) had lower odds of depression compared to patients who earned less, while patients who missed clinic appointment sometimes (OR=26.02, P=0.025, CI 1.503–450.226) and those who reported change in sleep pattern (OR=15.91, p=001, CI 3.030–83.567) had higher odds of depression. Male participants had lower odds of anxiety (OR=7.93, p=0.003, CI 2.004–31.370) while those who missed medicines very often (OR=6.79, p=0.024, CI 1.288–35.852) and those who reported change in sleep pattern (OR=10.21, p=0.000, CI 2.790–37.393) showed higher odds of anxiety. Three main themes emerged from the qualitative interviews: (1) Navigating multidimensional suffering before and during a pandemic, (2) the healthcare system as a precipitant of suffering, and (3) finding hope and meaning amidst uncertainty and suffering.

Conclusion

Mental health morbidities were great in this cohort, occurring in a multifaceted manner, with disruptions to the psychological, social, financial, and physical dimensions of patients’ quality of life. Palliative care continuity and mental health, psychosocial and spiritual support services should be integrated into humanitarian emergency health care package in future outbreaks.

Background Information

COVID-19 is a highly infectious disease caused by a strain of coronavirus. Whereas research and its treatments have been steadily improving since its outbreak, COVID-19 is significantly associated with high transmission rate, high mortality rate, and psychological sequelae, mainly fear, anxiety, and depression.^1–6 It is a scary disease that has affected all the continents in the world. However, its impacts in less-resourced countries (poverty) have been more devastating compared to high-resourced settings.

COVID-19 virus causes illness in humans and spreads primarily through droplets of saliva or discharge from the nose when an infected person coughs or sneezes.⁷ The World Health Organization declared the outbreak a pandemic on 11 March 2020.⁸ The disease has become a major threat to public health, families, governments, and healthcare systems worldwide.

It is estimated that 2.5–7% (about 284 million people) of the world’s population have an anxiety-related disorders., making it the most prevalent mental health disorder.⁹ Research further shows that the figures could even be under reported, more especially in Low-and Middle-Income Countries (LMICs) where population-based research is disproportionately scarce.⁹ Anxiety and depression are also most predominant morbidities reported among patients with serious life-limiting illnesses such as cancer.¹⁰

Uganda registered a cumulative total of 172,234 COVID-19 cases and 3,632 deaths since the outbreak of the disease on 3^rd January 2020. Strict restrictions including total lockdown, suspension of public gatherings and public transport, and mass vaccination were instituted by the president to minimize and prevent transmission of the virus and deaths. However, frequent vaccine stock outs/shortages, and fear regarding the safety of the vaccines contributed to low uptake of the vaccines. Patient attendance at Hospice Africa Uganda (HAU)¹¹ clinics reduced greatly during the pandemic. The patients had difficulties in turning up for their clinic appointments and medication refills because of lockdowns and restrictions on public transport.

Patients living with an underlying chronic or life-limiting illness such as cancer are at a higher risk of acquiring the disease and experiencing severe complications, including death, than their healthy counterparts. Literature on the mental health impact of COVID-19 has also considerably increased in recent years. Systematic reviews examining COVID-19 mental health impact in LMICs show high rates of psychological distress and increase in mental health disorders.^12,13 On the other hand, there is evidence supporting the importance of integrating palliative care, psychosocial and mental health services into universal health coverage during public health emergencies.^12–14

For example, a recent systematic review of 81 studies on palliative care delivery in LMICs found that palliative care reduced hospital stays, decreased unnecessary end-of-life treatments, and facilitated home deaths while community-based palliative care empowered patients and families to manage care at home, cope with uncertainties, and lower healthcare costs.¹⁴

Notably, based on a rigorous literature review undertaken for this study, no documented study examining mental health in chronic and palliative care patients during COVID-19 pandemic in Ugandan setting is known. This highlights a critical evidence gap and could limit development of context-specific and responsive interventions. Moreover, due to possible context differences, evidence from studies conducted elsewhere, in other LMICs may not wholly give a representative picture and nuanced experiences of patients in Uganda. Thus, to some extent, this study contributes important evidence to the body of evidence on the mental health impacts of COVID-19 in the context of low-resourced setting, chronic illness and palliative care.

Main Aim

The study aimed to examine the mental health experiences of patients receiving palliative care for chronic illnesses during the COVID-19 pandemic at Hospice Africa Uganda.

Specific Objectives

1. To estimate the prevalence of anxiety and depression among patients in palliative care during COVID-19 pandemic.

2. To identify factors associated with anxiety and depression among palliative care patients during the COVID-19 pandemic.

3. To explore palliative care patients’ experiences during the COVID-19 pandemic with an emphasis on their mental health.

Materials and Methods

Study Design and Population

This cross-sectional study used a convergent mixed-methods approach to data collection. The study was conducted in three hospice settings representing different regions of Uganda: (1) Hospice Africa Kampala in the central urban district and capital of Uganda, (2) Mobile Hospice Mbarara located in semi-urban southwestern Uganda, and (3) Little Hospice Hoima located in rural mid-western Uganda. The three hospice sites are under the Hospice Africa Uganda,¹¹ a specialized institution that provides holistic person-centered palliative and end-of-life care for patients and families living with serious illnesses.

Recruitment Criteria

Inclusion Criteria

Participants were eligible if they were aged 18 years or older, had a diagnosis of life-limiting illness (cancer, HIV/AIDS, or any other chronic non-cancer/HIV illness), and received palliative care at the HAU from the outbreak of the COVID-19 pandemic from March 2020 to 30^th July 2021. Patients judged by the attending clinicians to be too ill to endure the study procedure were excluded.

Sampling and Sample Size

Quantitative Data

Convenience and purposive sampling were used to select participants for the quantitative cohort, and in-depth interviews for the qualitative cohort respectively. That’s, the study enrolled participants who were active in care and available to participate in the study. The participants were patients who attended the outpatient clinic at any of the three study sites during the study period. According to Krejcie and Morgan’s table¹⁵ for determining the sample size for a finite population of 100 outpatients, a sample of 80 patients was deemed to be representative. The sample in this study comprised 96 participants.

Qualitative Data

Purposive sampling was employed to select eligible participants who were willing to participate in in-depth interviews. These were selected from among those who completed the Hospital Anxiety and Depression Scale (HADS) and appeared to have rich experiences related to COVID-19 and its impact on their mental health, which informs objective three.

Data Collection Methods and Tools

Quantitative data were collected bythe second author GN and another trained research assistant through face-to-face interviews using HADS. The tool was supplemented with a demographic data sheet to capture the biodata of the sample, which included specific questions on the COVID-19 pandemic.

The tool was pre-tested on five palliative care patients to test its suitability for the current study. No major amendments were required, and the data were analysed in this study. There were no missing data since the interviews were conducted face-to-face with individual participants.

The HADS is a standardized, validated and reliable tool for use to assess and measure anxiety and depression in different patient (hospital) and community settings, including palliative care patients^16–18 and in Uganda.¹⁹ It has been validated in several studies in Africa including Nigeria by Abiodun²⁰ who found high sensitivity (88.9) for anxiety and 90.8 for the depression scale with specificity of 88.5% for anxiety and 88.6% for depression and in Ethiopia by Wonde et al²¹ where it demonstrated high reliability (Cronbach’s Alpha 0.86 for Anxiety and 0.91 for depression). The Cronbach’s Alpha for depression subscale in this study was 0.88 and 0.85 for anxiety subscale.

The 4-point Likert scale has a total of 14 categorised items ie seven (7) items in each of the anxiety and depression subscales. Responses were categorised into levels of anxiety (A) with scores ranging from 3, 2, 1, and 0 in descending order, where 3 denotes a severe form of anxiety/depression and 0 denotes no anxiety/depression. Final scores were obtained by summing up the responses for each subscale of anxiety (A) and depression (D). Diagnosis of clinical anxiety or depression was based on the following criteria (Table 1):

Table 1.

Categories of Anxiety and Depression as Scored on the HADS

Score Obtained on the HADS	Level of Anxiety	Level of Depression
0-7	Normal level of anxiety	Normal level of depression
8-10	Borderline abnormal level of anxiety	Borderline abnormal level of depression
11-21	Abnormal level of anxiety	Abnormal level of depression

Qualitative data were collected through in-depth audio-recorded face-to-face interviews by GN, HK, and EM using an open-ended topic guide designed for this study. The topic guide was pre-tested on two palliative care patients and found to be suitable for this study. Data from the pilot study were used for the overall interview sample. Data saturation, the point at which no new data/themes emerged from the interviews and themes became repetitive, was reached at the 10^th interview.

Information and consent forms and data collection instruments, including interviews, were administered in the native languages of the participants: Luganda, Runyankole, and Runyoro which are the three most popular languages in the regions served by the study sites-; Hospice Africa Kampala, Mobile Hospice Mbarara and Little Hospice Hoima respectively. The translations were back-to-back and were undertaken by language experts fluent in the respective languages.

Interviewers were conversant with the native language(s) of the patient group and had experience of working with palliative care patients for 5 years and more. Two of the interviewers are clinicians (GN and EM) while one (HK) is a monitoring and evaluation officer with experience in both qualitative and quantitative data collection. Data were collected in April and May of 2022.

Data Analysis

Quantitative Data

Quantitative data were cleaned, checked for completeness, and analysed using STATA version 17.0 by the third author (EN). Categorical variables were expressed as frequencies and proportions (%). Pearson’s chi-square test and multivariate logistic regression analysis were performed to calculate the HADS scores and examine the association between categorical variables, anxiety, and depression. Statistical significance was set at P<0.05.

Qualitative Analysis

Qualitative data were analysed using thematic analysis. Audio-recorded interviews were transcribed verbatim and analyzed using 6-step inductive thematic analysis proposed by Braun and Clarke,²² allowing for themes to emerge from the data. First, GN familiarised himself with the data by reading and rereading the transcripts. Second, significant and meaningful participant narratives were identified through line-by-line highlighting using a coloured pen. Third, the significant narratives were further organised and paired together based on their homogeneity in meaning to generate broad categories. In stage four, the categories were critically analysed to generate broad-based meaningful themes and assigned excerpts corresponding to the themes. The fifth step involved sharing the initial themes and original transcripts with co-authors (DBA, EN, and SWA) to refine themes, theme structure, and corresponding excerpts. Disagreements and suggestions were discussed and resolved through consensus. In the sixth step, a narrative report of the findings was written.

Integration of Results

Following independent analysis of qualitative and quantitative data, a convergent integrated approach was applied to construct the discussion. To note, the discussion was framed in such a way that results were used to account for assumptions in the emerging data, differences and contradictions and to support complementarity where results in either arms of the study were in agreement or consistent with each other. This discussion was placed within the context of the study aims and existing literature.

Results

Quantitative Results

Demographic and Clinical Profiles of the Sample

96 patients were included in this study. Majority (74%) were female and were aged 45 years and above. Majority (87.5%) of the respondents lived with someone to care for them. 39.6% had a history of mental health problems, whereas 31.3% had a history of catching or death from COVID-19 in the family. Table 2 presents the demographic characteristics.

Table 2.

Demographic and Clinical Profiles of the Respondents (n=96)

Variables	Frequency (n=96)	Percentage (%)
Age
18–44	25	26.0
45+	71	74.0
Sex
Female	71	74.0
Male	25	26.0
Diagnosis
Cancer	64	66.7
HIV/AIDS	24	25.0
Other	8	8.3
Education Level
None	22	22.9
Primary	45	46.9
Secondary	18	18.8
Tertiary	11	11.5
Relationship/Marital Status
Divorced/Separated	5	5.2
Married	41	42.7
Single	23	24.0
Widowed	27	28.1
History of Mental Health Problems
No	55	60.4
Yes	36	39.6
Functional Status
Independent functional status	69	71.9
Partially dependent/disabled	14	14.6
Totally dependent/disabled/bedridden	13	13.5
History of Catching or Death from COVID-19 in the Family
No	66	68.8
Yes	30	31.3
Living Situation
Living with family/close relative	84	87.5
Living alone	8	8.3
Living with distant relative/friend/w.	4	4.2
Monthly Income Level (in Ugandan shillings)
No income	44	46.8
<100’000 (<$27)	38	40.4
100’001–200,000 ($27-$54)	7	7.5
200’001–500,000 ($54-$136)	2	2.1
500’001 −1,000,000 ($136-$272)	3	3.2
Pain Control Status
Always in Pain	12	12.5
No pain at all/pain well controlled	20	20.8
Rarely in Pain	31	32.3
Sometimes in Pain	33	34.4
Change in Sleep Pattern
No	50	52.6
Yes	45	47.4
Missed Medicine
Never	36	39.1
Yes, sometimes	36	39.1
Yes, very often	20	21.7
Missed Clinic Appointment
Never	33	34.7
Yes, sometimes	39	41.1
Yes, very often	23	24.2

Sleeping Patterns During the Past One Year (January–December 2021)

When asked about their sleeping patterns during the previous one year, 45 (47%) of the respondents reported a change/disruption in their sleeping patterns. Figure 1 shows the changes reported by the participants.

Figure 1.

Changes in sleep among the respondents (n=45) during the previous one year.

We found that a larger proportion (57.8%) of the respondents (n=45) who reported changes in their sleep patterns had shorter periods of sleep during COVID-19 pandemic, with 26.7% reporting complete lack of sleep. However, this study did not explore sleep quality.

Missed Appointments and Missed Medicines During the Previous One Year

Respondents were asked if they had failed to visit their doctor or had missed routine clinic appointments in the past year. Majority 62 (65%) reported they had missed their appointments, while 56 (58%) had missed their routine medicines, mainly for pain/symptom relief during the same period. Detailed findings are presented in Figure 2.

Figure 2.

Percentage of participants who missed appointments and medicines in the previous one year.

Reasons for missed appointments and/or medicines varied. Among the 64 respondents who reported missing their appointments and/or medicines, 45 (70%) attributed this to lack of means of transportation during the lockdown. Others attributed their missed appointments and/or medicines to lack of money for transport 33 (51.6%), fear of contracting COVID-19 18 (28.1%), and failure to find a doctor at the hospital/clinic 5(7.8%), as shown in Table 1 above.

Prevalence of Depression and Anxiety Among the Respondents

The HADS scores showed 25 (26.0%) of the 96 respondents were in the category of abnormal depression, while 27 (28%) were in the category of abnormal anxiety as seen in Table 3. Findings further showed that that only 27 (28%) of the 96 respondents had normal total HADS scores of anxiety and depression. 14 (15%) of the respondents had abnormal scores for both depression and anxiety as seen in Table 4.

Table 3.

Proportions of Participants with Normal, Borderline, and Abnormal Scores on the HADS

Anxiety/Depression Category	Depression	Anxiety
Normal	40 (41.7%)	37 (38.5%)
Borderline	31 (32.3%)	32 (33.3%)
Abnormal	25 (26.0%)	27 (28.1%)

Table 4.

Comparison of Proportions of Participants with Normal, Borderline, and Abnormal Scores on the HADS

		Anxiety
		Normal	Borderline	Abnormal
Depression	Normal	27 (28.1%)	5 (5.2%)	1 (1.0%)
	Borderline	6 (6.3%)	20 (20.8%)	12 (12.5%)
	Abnormal	4 (4.2%)	7 (7.3%)	14 (14.6%)

Chi-Square Analysis of Predictors of Anxiety and Depression Among the Respondents

Factors Associated with Depression

As shown in Table 5, Chi-square test analysis revealed that younger age (18–44years) (χ²=7.508, p=0.023), having a personal or family history of mental health problems (χ² =8.319, p=0.016), having no income (χ² =17.258, p=0.001), having missed medications (χ² =16.864, p=0.002), missed clinic appointments (χ² =14.446, p=0.006), change in sleep pattern (χ² =13.399, p=0.001), and history of catching or death from COVID-19 in the family during the COVID-19 pandemic (χ² =6.426, p=0.040) were significant predictors of depression. No significant association was observed between sex (χ² =2.221, p=0.329) and diagnosis (χ² =2.221, p=2.361).

Table 5.

Factors Associated with Depression Among the Participants (n=96)

Variable	Percentage of Participants by Category of Depression (n=96)			Chi-Square (χ2)	P-value
	Abnormal	Borderline	Normal
Age				7.508	0.023
18–44	44.0	40.0	16.0
45+	19.7	39.4	40.9
Sex				2.221	0.329
Female	29.6	39.4	31.0
Male	16.0	40.0	44.0
Diagnosis				2.361	0.670
Cancer	23.4	40.6	35.9
HIV/AIDS	33.3	41.7	25.0
Other	25.0	25.0	50.0
Personal/family history of mental health problems				8.319	0.016
No	20.0	34.6	45.5
Yes	36.1	47.2	16.7
Income level				17.258	0.001
No Income	43.2	40.9	15.9
100,000+	11.5	38.5	50
Missed medicines				16.864	0.002
Never	16.7	25.0	58.3
Yes, sometimes	22.2	50.0	27.8
Yes, very often	45.0	45.0	10.0
Missed clinic appointments				14.446	0.006
Never	12.1	30.3	57.6
Yes, sometimes	28.2	48.7	23.1
Yes, very often	43.5	34.8	21.7
History of catching or death from COVID-19 in the family				6.426	0.040
No	21.20	36.40	42.40
Yes	36.70	46.70	16.70
Change in sleep pattern				13.399	0.001
No	14.0	36.0	50.0
Yes	40.0	42.2	17.8

Factors Associated with Anxiety

As shown in Table 6, Pearson’s Chi-square test found that younger age (χ²=6.116, p=0.047), personal or family history of mental health problems (χ² =11.032, p=0.004), missed clinic appointments, change in sleep pattern (χ²=19.936, p=0.001), and missing medication (χ² =10.083, p=0.039) were significantly associated with anxiety.

Table 6.

Factors Associated with Anxiety Among the Participants (n=96)

Variable	Percentage of Participants by Category of Anxiety (n=96)			Chi-Square (χ2)	P-value
	Abnormal	Borderline	Normal
Age				6.116	0.047
18–44	44.0	36.0	20.0
45+	22.5	32.4	45.1
Sex				4.816	0.090
Female	26.8	39.4	33.8
Male	32.0	16.0	52.0
Diagnosis				2.558	0.634
Cancer	28.1	32.8	39.1
HIV/AIDS	20.8	37.5	41.7
Other	50.0	25.0	25.0
Personal or family history of mental health problems				11.032	0.004
No	18.2	30.9	50.9
Yes	44.4	36.1	19.4
Income level (in Ugandan shillings)				4.953	0.084
No income	38.64	31.8	29.6
100,000+	19.23	34.6	46.2
Missed medicines during the pandemic				10.083	0.039
Never	19.4	25.0	55.6
Yes, sometimes	25.0	41.2	33.3
Yes, very often	50.0	25.0	25.0
Missed clinic appointments				7.701	0.103
Never	15.2	33.3	51.5
Yes, sometimes	28.2	41.0	30.8
Yes, very often	43.5	21.7	34.8
History of catching or death from COVID-19 in the family				5.331	0.070
No	21.2	34.9	43.9
Yes	43.3	30.0	26.70
Change in sleep pattern				19.936	0.001
No	16.0	24.0	60.0
Yes	40.0	44.4	15.6

Note: P<0.05 was statistically significant.

Multivariate logistic regression analysis to analyze factors associated with anxiety and depression.

In Table 7, regarding depression, after adjusting for covariates, multivariate logistic regression analysis showed that palliative care patients who earned 100,000 Ugandan shillings or more (OR=0.18, p=0.026, CI 0.040–0.818) had 82% lower odds of depression compared to patients who earned less than 100,000 Ugandan shillings while patients who missed clinic appointment sometimes (OR=26.02, p=0.025, CI 1.503–450.226) and those who reported a change in sleep pattern (OR=15.91, p=001, CI 3.030–83.567) had higher odds of depression.

Table 7.

Multinomial Logistic Regression Analysis of Factors Associated with Depression

Outcome Variable: Depression	RRR/OR	Std. err.	P value	[95% Conf. Interval]
Normal	Base outcome
Borderline depression score
Personal/family history of mental health problems [YES]	4.34	3.00	0.034	1.116–16.889
Income level of Uganda Shillings 100,000+	0.40	0.26	0.158	0.115–1.422
Missed clinic appointments sometimes	1.34	2.02	0.843	0.071–25.611
Missed clinic appointments oftentimes	0.12	0.19	0.173	0.006–2.543
Missed medicine sometimes	4.51	6.64	0.306	0.253–80.552
Missed medicine oftentimes	78.41	136.17	0.012	2.607–2358
Change in sleep pattern [YES]	4.30	2.88	0.029	1.159–15.948
Abnormal depression scores
Personal/family history of mental health problems [YES]	4.05	3.22	0.079	0.850–19.272
Income level of Uganda Shillings 100,000+	0.18	0.14	0.026	0.040–0.818
Missed clinic appointments sometimes	26.02	37.85	0.025	1.503–450.226
Missed clinic appointments oftentimes	1.11	1.61	0.942	0.065–19.057
Missed medicine sometimes	0.31	0.41	0.382	0.022–4.297
Missed medicine oftentimes	21.23	34.06	0.057	0.915–492.614
Change in sleep pattern [YES]	15.91	13.47	0.001	3.030–83.567

In Table 8, regarding anxiety, multivariate regression analysis showed that participants who were male had lower odds of anxiety (OR=7.93, P=0.003, CI 2.004–31.370) while those who missed medicines very often (OR=6.79, P=0.024, CI 1.288–35.852) and those who reported change in sleep pattern (OR=10.21, P=0.000, CI 2.790–37.393) showed higher odds of anxiety compared to their colleagues who did not report missing medicines and change in sleep pattern respectively.

Table 8.

Multinomial Logistic Regression Analysis of Factors Associated with Anxiety

Outcome Variable: Anxiety	RRR/0R	Std. err.	P value	[95% Conf. Interval]
Normal	Base outcome
Borderline anxiety scores
Male Sex	0.19	0.14	0.026	0.046–0.818
Personal/family history of mental health problems [YES]	4.37	2.97	0.030	1.154–16.546
Missed medicines during the pandemic sometimes	2.87	1.83	0.099	0.821–10.043
Missed medicines very often	3.75	3.05	0.105	0.759–18.474
Change in sleep pattern [YES]	7.77	4.75	0.001	2.347–25.732
Abnormal anxiety scores
Male Sex	0.55	0.39	0.394	0.139–2.171
Personal/family history of mental health problems [YES]	7.93	5.56	0.003	2.004–31.370
Missed medicines during the pandemic sometimes	2.25	1.61	0.256	0.555–9.107
Missed medicines very often	6.79	5.77	0.024	1.288–35.852
Change in sleep pattern [YES]	10.21	6.76	0.000	2.790–37.393

Notes: P<0.05 represents variables that were statistically significant.

Abbreviations: RRR/0R, Relative Risk Ratio/Odds Ratio; Std. err, Standard Error; P-Probability value; Conf. Interval, Confidence Interval.

Qualitative Results

Of the 10 participants, eight were female. Seven patients had a confirmed diagnosis of cancer, two had HIV/AIDS and one had sickle cell disease (Table 9).

Table 9.

Demographic Profile of Participants (n=10)

Respondent	Sex	Age	Diagnosis	Contracted COVID-19	Family Member/Relative/Friend Contracted or Died of COVID-19
#1	F	25–34	Sickle Cell Disease	NO	YES
#2	F	18–24	Osteosarcoma	NO	YES
#3	F	44	Cancer and HIV	NO	YES
#4	F	45	Cancer of the uterus	NO	YES
#5	M	38	HIV/AIDS, TB spine	NO	NO
#6	F	50	Breast cancer	NO	YES
#7	F	40	Cancer of the uterus	NO	NO
#8	F	52	Breast cancer	NO	YES
#9	F	39	Cervical Cancer	NO	NO
#10	M	62	HIV/AIDS and non-Hodgkin’s lymphoma	NO	NO

Three major themes emerged from the qualitative interviews: (1) navigating multidimensional suffering before and during the COVID 19 pandemic, (2) healthcare system as a precipitant of suffering, and (3) finding hope and meaning amidst suffering. Seven subthemes were related to these themes. Figure 3 shows the emergent themes and subthemes.

Figure 3.

Emergent themes and subthemes.

Theme 1: Navigating Multidimensional Suffering Before and During COVID 19 Pandemic

Subtheme 1.1: Mental Health Suffering Related to Receiving Bad News of Life-Limiting Illness

Participants narrated their mental health experiences before the COVID-19 pandemic. In particular, they all recollected how they received bad news about their illness and the resultant psychological and emotional suffering (ie fear, anxiety, depression, and worry) they had to endure. Some of the participants, especially if they were older, said that they had no option but to develop emotional strength to face the reality of illness and its disruptions.

When I first heard that I have cancer, it was the worst moment of my life… I did not know until that same man lost a wife whom I didn’t know he had, then rumours went around that his wife died of HIV; I became so anxious and when I tested, I found I was positive [Participant #3]

When they told me ‘Cancer’, my heart skipped. I knew that cancer is a bad disease and kills but I said to myself, God saved me, God is above all these diseases, and He is capable of healing me of this cancer. I wore faith and said to myself, I am not going to die, God is above cancer. So, I just gave up on worrying. [Participant #8]

Younger participants (18–34 years) reported greater emotional and psychological suffering than their older counterparts. Their mental health problems appeared to be predominantly related to their shuttered dreams and future prospects following the illness. Similarly, participants who had a cancer diagnosis expressed greater psychological disruptions and suffering (mainly worry and fear of death) than those who had a non-cancer diagnosis. Fear and worrying were mainly perpetuated by their knowledge of cancer as a deadly and incurable disease.

I was around 18 years old then; I went to Mildmay for checkup. I felt so bad because I never thought I could get HIV because I was not so much into women [Participant #7]

He [the doctor] told me, ‘It is cancer’. At that point, my mind strayed. I could not talk with him anymore. I became so scared, because I had just known a woman who had cancer and her breast had been removed. I knew my breast would also be removed and that I would die soon [Participant #9]

I was told that I have the HIV. It was just normal. I was feeling okay because these are diseases that don’t kill you there and then. If you can get the medicine, you continue to live [Participant #10]

There was a theme about the pitfalls in communication encountered during interactions with health professionals. This manifests as poor, inadequate, or inappropriate information given to patients by their attending doctors in health settings. This underscores the challenges that health professionals encounter when dealing with difficult or challenging conversations with patients. One participant said,

My doctors told me that I would not make 15 years, it was too much for me to handle. It disturbed me mentally very profoundly and I immediately started isolating myself from people. I went into depression and started dodging classes upon hearing that sicklers do not survive… [Participant #1]

While I was in the hospital, the doctors told me not to tell my children, my friends and my family. I asked why?. They said all those people will discourage you because they might have lost loved ones to cancer; they will tell you that cancer has no cure and you will not continue to get treatment. They advised me to just go home and not tell anyone [Participant #3]

Subtheme 1.2: Mental Health Suffering Related to Distressing Symptoms

There was a common theme of navigating disruptions resulting from distressing disease symptoms voiced by nearly all participants, which caused profound suffering, including pain and other symptoms such as diarrhoea, body weakness, poor or loss of appetite, worrying about the future, feelings of hopelessness, and disruptions in their sexual lives.

I always feel lower abdominal pain. Most of the foods I take I feel fire burning inside, when I take sugar, I vomit…. My body is too weak, for me to rest there is a certain tablet I take to sleep [Participant #4]

I could go with ‘kaveera’ [polythene bag] full of clothes to change because the breast was oozing blood; one arm would be holding the [grossly swollen] breast and another holding kaveera and I could walk from Nsambya to Mulago [about 5kms] in a lot of pain [Participant #5]

Some narrated how they suffered severe, disabling side effects of aggressive treatment, mainly cancer treatment such as chemotherapy, radiotherapy, and surgery.

One day they injected me and I fainted. My immunity went down and they told me to buy supplements for 350,000 Ugandan shillings to regain but we did not get the supplements because telling me to get that much money is like sending me to die; because we even did not have food to eat at home and my children were so young’. [Participant #6]

When I was getting the dugs [chemotherapy], I was very weak, no appetite for food, diarrhea all the time and even this hair, it went away completely [Participant #10]

Subtheme 1.3: Socioeconomic Constraints as Drivers of Suffering

Bodily disfigurement, social isolation, stigma, disruptions in the ability to perform activities of daily living (ADLs), and financial constraints associated with inability to meet basic needs (food, education for children, healthcare costs, etc) were mentioned as common sources and exacerbators of emotional and psychological suffering, mainly stress for most of the participants.

My siblings are already going through a lot because of me being a sickler; they failed to get married because of me; people tell their potential partners that there is a sickler in our family, so now we have reached a moment where we hide. And being a poor family, a lot of stigma happens [Participant 1#]

All my relatives at home no one comes close to me except my sister; they say that cancer doesn’t cure so money would be wasted. I am a total orphan; my mum and dad died when I was young …When I got cancer my husband left me and married another woman. [Participant #4]

A lot has changed. It [living with one breast] disturbs me a lot; sometimes I feel like this side [disease-free breast] is not mine. Sometimes, I feel I am going to fall on this side, and if I don’t quickly sit down, I can easily lose balance and fall down. That’s where I find the biggest problem. I am no longer able to do the things I used to do before. Even cooking is very hard. I no longer feel and love myself like before [Participant #9]

Younger participants, those who lacked or had poor social/family support, comorbid illness, or another family member with a serious or life-threatening illness, expressed greater psychosocial and emotional morbidity than their colleagues who had good social support, which exacerbated their suffering and, on some occasions, clouded their view and essence of life.

Truth be told, I have plans but every time I sit back and think about the sickness, I feel like I am going to die soon and I say to myself ‘will I be able to fulfil the plan? Let me just be there and wait for my day to die. [Participant #1]

My mum came once to see me. My brother also doesn’t care because he only came once to see me. All my uncles know that am sick but they isolated and neglected me. Whenever I have something stressing me, I just sleep… [Participant #2]

Some participants expressed spiritual suffering which manifested in different ways including resentment, losing hope, questioning God and yearning for holy sacraments.

I reached a moment when I was depressed; it is my daughter who counselled and brought me closer to God. She told me ‘God gave you cancer for a reason; He wants you to get closer to Him’. Every time she told me that I would quarrel and beat her up, telling her that ‘God has not helped me in any way, I have been praying to Him [God] but every time He just gives me problems [Participant #3]

I don’t receive Holy Communion. In fact, the sacrament I haven’t got is Holy Matrimony. That one is affecting me and my wife, because we cannot wed unless I first go to her parents for introduction. It costs a lot of money. [Participant #10]

For some of the participants, deficits in family support and a lack of adult caregivers meant that their young children (if they had) had to assume a physically and emotionally daunting caregiving role.

When I was in Mulago for surgery, my relatives did not come to see me. I was only with my 9-year-old daughter. We would wake up one day when all patients on ward are dead and my daughter would tell me ‘Mummy do not look this side all these people are dead’. She would hold my head down until the dead bodies are taken out of the ward…It was so hard for me to tell her that I contracted HIV but this holiday when she came back from school, I told her. She hugged me and we both cried for almost 5 minutes’. [Participant #3]

Nearly all the participants navigated serious socioeconomic constraints associated with significant difficulties in meeting even the minimum basic needs, including food, education for their children, and housing. Homelessness, post-traumatic stress disorder, and lack of and/or difficulties in meeting basic needs emerged as additional sources and amplifiers of suffering for the participants. Those with refugee status navigated multiple complex forms of suffering which they described as unbearable and inconsolable.

What is depressing me most is being in a rented house and these days I no longer save. I got a man whom I thought would take care of me but after giving me HIV he deserted me [Participant #3]

I am a refugee from Rwanda; we fled genocide about 30 years ago. As we were fleeing, I fell in a deep pit where I spent 3 days and injured my back. My husband’s mental illness started way back when he saw his father being cut into pieces during the genocide. Now the road traffic accident made the situation worse… I am so stressed; some days back I was going to Kiruddu hospital but the car almost knocked me down while I was lost in deep thoughts. I feel bad; I can spend the whole day without talking or laughing. I just feel sad every day and my children ask me ‘mum, when will this situation end?. [Participant #6]

She added:

We are staying in a good Samaritan’s room. We are eight people in this small room. We are all by ourselves. We have no relatives; my eight siblings died during the war though am not sure if others survived because we all went different ways. I live a very confused life. I am so depressed; I do not know where to put my children. When someone annoys or abuses me, I just enter my bed and cry. It reminds me where we came from, back home, we had better houses, we had everything, it was a God-fearing family. No person can give me hope because my heart is overwhelmed; I am worried if I die where will I leave my children? They will just be on the streets...

At least half of the participants reported a history of suicidal ideation and attempts. For some, fear of the worst and uncertainty about future disease ramifications precipitated emotional and psychological suffering. Notably, multidimensional suffering from distressing symptoms, post-traumatic stress disorder, poverty, and lack of social and emotional support emerged as a common cause of psychological and/or mental morbidity among the interviewees.

I have had lots of suicidal thoughts and I had a plan of taking poison in food. I wanted to do it in a way that wouldn’t’ seem intentional. In 2019, I bought poison and put it under my bed such that even if it poured in my food, I would eat it without minding and I get an easy death [Participant #1]

It feels bad to have cancer; because you always ask ‘why me?’. I wanted to kill myself and I crashed battery cells and I took it but I did not die, I just became so weak and no one knew about it [Participant #2]

When my Uncle rejected me on phone, getting out of the hospital going back home, I moved on the road talking to myself saying ‘God why did you do this to me, how am I going to leave my child? I was moving in the middle of the road; I wanted to be knocked down and die. A certain man came and pulled me away… [Participant #3]

I was referred to Hospice in Makindye. They told me the cancer had spread up in the stomach; I can be bleeding all the time and smelling. it is a very bad smell that you cannot cover your head in the bedsheets. I feel so uncomfortable… I thought of killing myself many times. [Participant #4]

Sometimes when time for Mulago appointment reaches, and I see my husband does not give me any support, I get stuck and say ‘God take me, because a time will come when I will be a burden to people and they get tired of me. I don’t know how far the disease will take me; whether my death will be sudden or whether it will first get me bedridden and pain me for long. To reach that point, I say to God, better you take me early [Participant #7]

They [suicidal wishes] come, eg when it is time for my clinic appointments; I look around and get worried. Sometimes I have the support but when it is not enough. Sometimes, suicidal wishes come when I am at the hospital [Mulago]; they want me to do certain tests but the money is not enough, I have to eat… Sometimes you go thinking you will spend two days there and you end up spending two weeks; you have travelled with say shillings 200,000 ($55), it all gets done and you start calling relatives, friends to support you. That brings thoughts. You call the children and you feel they are also tired; the child you called the other week or month, you have to call them again; within your heart, you fear to call them again, and you say, to reach here better I die [Participant #9]

Subtheme 1.4: Effects of COVID-19 on the Mental Health of Participants

Participants then echoed their experience of the COVID-19 pandemic and how it heightened financial hardships, social isolation, and emotional and psychological suffering, and further complicated the existing difficulties in treatment access. Fear of dying as they [patients with life-limiting/life-threatening illnesses} were among the groups classified as having a higher risk of dying from COVID-19, while some lost their loved ones (to COVID-19) who formed part of their main social support system.

During lock down, it was so hard for me to access treatment because the nurse could not visit me. Every time I called, they would tell me to get someone to come and pick my medicine. Sometimes I would get a taxi driver to pick for me but it ends up losing my medicine [Participant #2]

My Uncle died of COVID-19; I almost committed suicide. It was a terrible moment for me; it is because of my daughter that I did not kill myself. I wished I had died instead of Uncle because he would take care of my daughter. I remember during the first lockdown he would send me food; chicken and eggs so I did not have stress. He paid my rent for two years in a three bedroomed house and he had bought for me a house as a gift for surviving cancer though his wish was not fulfilled because he had promised to take me to my house on 20th and he died on 9^th. Up to now I do not know where the house is and his children do not like me [Participant #3]

During COVID-19, around May-June 2020, I was very sick; that’s when I worsened. I would hear the news, and was so much worried. Then also, during COVID-19 pandemic, my 13-year-old daughter was abducted and impregnated [Participant#8]

I became afraid and worried and lacked peace. I reached a point when I got so worried that I said to myself, now me who has cancer, if I get COVID-19 I won’t survive! Because they told us that COVID compromises, disorganises the lungs. I said eeh, now me, this cancer sometimes also goes in the lungs… There was no money; people were not working, we decided to sell off some items at home, including our motorcycle… [Participant #9]

COVID-19 has disturbed me in getting medicines. I was in Hoima [200 kms from the capital Kampala] and because of the lockdown I could not move to Kampala. That disturbed me a lot. We were very worried; like, ‘I didn’t get treatment, this swelling may increase and I did not get the medicine to relieve the pain! I remember that time, before the president announced the lockdown, the doctors were not there [in Mulago]; they were fearing and others were dying. People were fearing to go to Mulago because they were saying COVID-19 was too much in Mulago. Even me I feared and decided to come back home. And the transport fares from Kampala were very expensive [Participant #10]

Theme 2: The Healthcare System as a Perpetuator of Suffering

All narrated suffering related to and/or caused by challenges around treatment access, mainly expensive treatments amidst background poverty. In particular, the phase of treatment was described as the most cumbersome part of the entire illness trajectory.

The cost of treatment is very high; it is very hard and most times I do not make it for my appointment… [Participant #1]

My journey for treatment is the most difficult. My sister had to move with my photo to get help from people because I was so unconscious. She could get good Samaritans to give us some money for soap to wash the clothes which were smelling and soiled with blood. People would abuse my sister that she is deceiving, that according to the photo I should be dead. They would tell her ‘Madam, you go and start working instead of using a dead woman’s photo to ask for help [Participant #5]

Some of the participants started worrying about treatment costs before they commenced treatment, as they had heard of scary, awful experiences narrated by their colleagues. For others, financial hardships associated with treatment costs and poverty forced them to sell household items to mobilise money to finance their treatment.

I was afraid of going to Mulago. I knew I would not manage Mulago, I didn’t have money. I requested the doctor ‘very kindly help me, help me, help me and work on me from here [regional referral hospital] [Participant #8]

I remembered people’s talk about Mulago; people tell you Mulago, money… The money I spent on treatment in Mulago was too much. I can’t even estimate it. Even my mother had to sell land. You have to pay shs 300,000 for the doctor to enroll you on ‘electricity’ [radiotherapy)... [Participant #9]

Additional expenses incurred on transport (including frequent visits to and from the hospital), upkeep, and accommodation, especially to access treatment and investigations during the treatment phase, were also mentioned as sources of financial, psychological, and emotional suffering. Moreover, nearly all participants were of low socioeconomic status and lived in poverty before they received a diagnosis. Financial suffering was even greater among the participants with comorbidities.

Transport is too much; all together I can spend like Uganda shillings 50,000 [$14] from home and going back. So, you calculate putting that 50,000 in transport, you be like let me buy the pain medicines I need every day. The cost of treatment is high because I only have mum as my provider [Participant #1]

…Yet, I had to eat, I had to buy medicines for the heart, I spent three months in Mulago, you sleep on the verandah, it rains on you… [Participant #9]

Transport up and down, coming from home [about 200kms], staying there [Uganda Cancer Institute] the whole day and then they tell you go back home and come back after... [Participant 10#]

Theme 3: Finding Hope and Meaning Amidst Suffering

Despite suffering, a few participants mentioned how they had to accept the tough reality and embrace positive living. With this focused positive outlook, they have attained reassurance and rewarding moments, something that has helped them find meaning in life, a reason to live, including focusing on accomplishing personal goals and unfinished business. They narrated the positive lessons and motivations they gained from their patienthood experiences.

I want to start a super market and I want to be a motivational speaker because right now, when I get an opportunity, I speak to people. I want to set up an orphanage home for patients who have sickle cell disease mainly because I have seen how I struggle to get medication. I want to help those children who cannot access medication. I want to set up some tailoring school… [Participant #1]

I want to live and see my son growing up because now he is 12 years and I want to start working again. Because now am a dependent and my son is being catered for by my parents, so it’s a lot on my parents. [Participant #7]

Participants then described recollections and acknowledged some of the important support systems they utilised to cope with disruptions and suffering caused by their illness and perpetuated by COVID-19. These included social support from family and friends, palliative and hospice care, and spiritual and religious support.

Subtheme 3.1: Finding Solace in Spirituality, Religiosity, and Spiritual Dimensions of Coping

Spirituality and religious and spiritual support systems were the most common coping mechanisms used by all the participants. These manifested in many forms, including prayer, reading motivational and reassuring biblical texts, moral and practical support from members of the church, and the inherent belief that God is in charge of everything, as exemplified in the following excerpts.

My relationship with God is very strong. I am a born again Christian and I am very close to God. Sometimes you reach a moment and feel like giving up but then I remember it has always been God; He knows why everything is the way it is and He is the reason am still alive [Participant #1]

Instead of living with people who don’t like me, it was better staying at church as God takes care of me. The only friends I have are from my church. I have that one friend who really makes me very happy, every time I feel so down and I talk with him I feel so relieved [Participant #2]

I was told that every organ in my body is rotten but I see myself still moving, God is protecting me. Right now, everything is in God’s hands. My God is my father and my mother. He is the one who keeps me strong. I cannot tell you how my family survives, from food to housing [rent] it’s only God [Participant #3]

We are always praying; if we do not pray, we die. He [God] said am always with you. We are saved; God’s words give me hope eg when we are praying and the pastor ‘says God has said He will help you, you will live, you will not die, the situation you are in is not permanent’. So, when I hear those words, I feel there is hope. [Participant #6]

I became so worried, only that I had faith. I said, everything is because of God’s plan. I said although there is COVID-19, although I am a cancer patient, everything is from God and when your day hasn’t reached, we worry over nothing, I can’t die. I was strong in faith… I try to put good thoughts in my mind; praying to God. I try my best to relieve myself of stress and it helps [Participant #9]

When I read the bible, I feel good, because, those things [suffering] happen in life. There are some biblical proverbs; eg Joab who had everything but everything; the riches ran away from him, but he stayed, he did not commit suicide or any other bad thing. Sometimes, when I am reading the bible, I find when I am reading about something that is happening to me. At my age, I am 62, but there are other people who die before the age of 60, 40, 30…. I can remember my brothers; one died when he was in primary six, and another at 39; he was killed. Now who am I? Others can hardly walk; at least me, I can walk, talk, and eat…. [Participant #10]

Subtheme 3.2: Psychosocial Support as an Enhancer of Coping

Next to spirituality and spiritual coping strategies, the popularity of coping strategies utilised was social and psychological support. Social support from family or friends was a key factor in enhancing coping strategies. Those with better social and psychological support expressed less severe psychosocial morbidity and better coping than their counterparts who lacked or had poor social support. In addition, maintaining some level of functioning, particularly the ability to engage in roles, played a crucial role in distracting some participants from negative thoughts.

What gives me happiness is sewing because my business now is sewing Kanzus and if I do not have business to do, I can be so stressed up [Participant #3]

We have never lost hope, we just eat what is available and take medicines, God brings people from different places to bring us food. I am still weak but at least I can wash some dishes. I am so happy that I can now walk around and so many people cannot believe am still alive [Participant #5]

God is great and He works in a miraculous way. I came from village to take care of my sister who has cancer of the Uterus but she is the one who has been taking care of me when I got breast cancer. I would be dead if I didn’t have her [Participant #5]

Subtheme 3.3: Compassionate Touch of Palliative Care Professionals

Being nursed by compassionate palliative care professionals who were and are always willing to listen and offer appropriate support also emerged as an influential factor that enhanced participants’ coping. Participants, in particular, referenced and acknowledged the compassionate care they receive from the palliative care team and the positive gains from daycare sessions and home visits at Hospice Africa Uganda.

The thing that makes me so happy Is hhen the Hospice team brings for me medicine [Participant #2]

I am now strong because when I come to daycare at Hospice, I realize am better than some people [Participant #7]

Discussion

This study examined the prevalence of depression and anxiety, associated factors, and the mental health experiences of patients in palliative care in a lesser-resourced setting during the COVID-19 pandemic. This study found the prevalence of borderline depression and anxiety was 32% and 33% and that of abnormal depression and anxiety was 26% and 28%, respectively. Depression and anxiety disorders are widely documented mental and behavioural symptoms experienced by cancer and palliative care patients, caregivers, as well as the general population.^19,23–25 Previous studies have reported similar findings.^26,27 For example, in a study conducted among family caregivers of cancer patients at Hospice Africa Uganda, Dipio et al²⁵ found anxiety and depression were prevalent at 45% and 26%, respectively, while Katende and Nakimera¹⁹ found 46% caregivers of cancer patients at Uganda Cancer Institute had depressive symptoms. These rates are comparable to those reported in studies conducted in HICs. In a cross-sectional survey of anxiety, depression, and stress during the COVID-19 pandemic in Canada and the US, Turna et al²⁸ found 31%, 29%, and 63% of their participants met criteria for generalised anxiety disorder (GAD), major depressive disorder (MDD) and stress, respectively.

On the other hand, however, studies from different parts of the world have reported wide variations in the prevalence of depression and depressive symptoms (8–77%)^29–32 and anxiety (11% to 63%)^31,33 among cancer and palliative care patients. Research on the prevalence of anxiety and depression in the patient population, including palliative care patients, during the COVID-19 pandemic is still scant. Much of the available research on the prevalence of anxiety and depression during the COVID-19 pandemic has focused on the general population^12,13 and has reported varying but increasing rates of psychological problems, such as stress, anger, anxiety, and depression, in different regions of the world.^{1,3,4,6,34,35}

A nationwide population-based study conducted in Ireland during the global COVID-19 pandemic found 20–27.7% of participants had an anxiety and depressive disorder,⁴ while a similar survey among Jordanian healthcare students found 22.4% to 3.8% and 26.2% had anxiety and depression respectively.³⁵ In a global review of the global impact of quarantine for COVID-19, Brooks et al³⁶ found the prevalence of depression ranged from 15% to 60% in the studies reviewed. It should be noted that most of the participants (74%) in our study were female. After controlling for covariates, multivariate regression analysis showed that male participants had lower odds of anxiety compared with their male counterparts. This striking finding underscores the need for public health interventions and services that are gender sensitive and responsive to the needs of vulnerable groups. Numerous global studies have reported that depression, stress, and anxiety are more prevalent in women than in men.^5,9,28 The lifetime prevalence of depression varies from 20–25% in women compared with 7% to12% in men.²⁹

Findings from interviews with the participants corroborate the quantitative findings from the HADS. Participants in this study recounted the background mental health morbidity that they had navigated even before the COVID-19 pandemic. They cited multifactorial stressors, such as living with the reality of incurability of disease, especially if they had a cancer diagnosis and sickle cell disease, and the resultant psychological and emotional suffering. Uncertainty and fear of the worst disease outcome, anxiety, constant yearning and search for a cure, feelings of hopelessness and worthlessness, worrying about unfinished business (especially about the future of their children) were common themes. Other perpetuating factors for psychological suffering reported by participants included distressing symptoms such as chronic pain, diarrhoea, body weakness, poor or loss of appetite, and disruptions in their sexual life, including being deserted by their male partners as they were no longer able to fulfil marital obligations. There was a theme about disfigurement related to illness, social isolation, the resulting stigma, homelessness, and disruptions in the ability to perform activities of daily living (ADLs) perpetuating emotional and psychological suffering, mainly stress and anxiety. Some participants reported suffering due to the severe, disabling side effects of aggressive treatments, mainly cancer treatment, such as chemotherapy, radiotherapy, and surgery. Unrelieved or poorly controlled symptoms and poor socioeconomic status have been reported in several studies to perpetuate depressive symptoms among palliative care patients.^27,29,37,38

Younger (18–34 years) participants and those with deficient social (family) support, comorbid illness, or another family member living with a life-threatening illness reported greater psychosocial and emotional suffering compared with their colleagues who had better psychosocial support. On the other hand, those with refugee status had more severe post-traumatic stress precipitated by the negative toll of conflicts and wars on their mental health and well-being, including losing their loved ones and being rendered homeless. At least half of the participants reported severe and disabling mental health problems including suicidal ideation and suicide attempts. Numerous previous studies have reported that anxiety and depression are more prevalent among those with poor socioeconomic status, underlying medical conditions, female sex, and younger age.^2,34–36,39 furthermore, greater psychological suffering has also been reported to be disproportionately higher among those living in low-and poorly resourced countries than in developed countries.⁵

The findings of this study underscore the need to prioritise and integrate holistic palliative care, mental health, and psychosocial and spiritual support interventions for the relief and prevention of serious health-related suffering (SHS) in patients living with life-threatening/life-limiting illness. Depression and anxiety are among the common causes of serious morbidity and poor quality-of-life (QOL) among patients with chronic illnesses.³³ An earlier survey conducted in Canada showed anxiety disorders were common among patients in palliative care programs.²⁷ Evidence further shows at least 50% of patients with advanced cancer have a clinical psychiatric disorder.⁴⁰ In their study, Kuo et al²³ found depression accounted for 50% of psychiatric consultations and 12% of all hospital admissions.

There was a common theme regarding challenges within the healthcare system, and the importance of these challenges in exacerbating financial hardships and psychological suffering which were recurring themes in the sample in this study. This finding is consistent with findings from the quantitative arm of the study where multivariate logistic regression analysis showed that participants who earned at least 100,000 Ugandan shillings a month had 82% lower odds of depression compared to their colleagues with lower income (OR=0.18, P=0.026, CI 0.040–0.818). Most notably, qualitative participants cited the expensiveness and unaffordability of cancer investigations and treatment and the costly expenses associated with transport and upkeep while accessing treatment. These were mainly related to having to travel very long distances and frequent movements to access cancer treatment at the Uganda Cancer Institute, situated in the capital city, and accessing palliative care amidst poverty. Anderson et al⁴¹ in their study found that 46% cancer patients at a regional referral hospital in Uganda met the World Bank’s definition of extreme poverty (living on $1.90/person/day).

Participants narrated their experiences during the COVID-19 pandemic. Worry and fear of dying from COVID-19 was a prominent emergent theme, with almost all interview participants reporting that they used to hear and were aware that patients with cancer and other underlying chronic illness carry a higher risk of dying if they contracted the deadly COVID-19 infection. This finding is consistent with a systematic review and meta-analysis which found that compared to controls, cancer patients had higher levels of anxiety.⁴² It can be hypothesised that the greater psychological suffering observed in this sample was in part, perpetuated by factors such as missed clinic appointments and medicines and sleep disruption due to prolonged lockdowns. This finding is supported by quantitative data. For example, multivariate logistic regression showed that missed clinic appointments had strong statistically significant higher odds of depressive symptoms while missed medicines had higher odds of anxiety, while change in sleep pattern had higher odds for both depression and anxiety. Research studies on the impact of COVID-19 cite similar psychological morbidity and difficulties in healthcare access, including non-availability of healthcare and delay in hospitalization among patients as the main risk factors for anxiety and depression among patients.^5,6

Previous studies reported similar risk factors for depression in patients with cancer, including younger age and poor functional status,⁴³ diagnosis of advanced/incurable disease or terminal illness, worries and fear of death, etc,^44,45 history of medical problems and poor health, family or medical history of depression or other psychiatric illness^35,39 and lack of social support.⁴⁰ Furthermore, evidence shows that the mental health of individuals is adversely affected during epidemics and pandemics.^46–49 In particular, epidemics of viral infectious diseases have been associated with increased risk of mental health morbidity, with anxiety, depression, and traumatic stress disorders ranking highest.^47–50 In their study, Banerjee et al² reported that the rapid transmission of COVID-19, its high mortality rate, and concerns, worries, and fear of the future associated with the disease were among the prime causes of anxiety and depression among study participants. In their study, Dhar et al⁶ found poor compliance with ongoing therapy increased from 34.4% to 64.7%, while deaths among stroke patients increased from 8.2% to 29.4% in pre-lockdown and during lockdown, respectively. Similarly, studies reporting data on general population cite lockdowns as a common driver of these psychological problems.^{1–4,28,34,35,39,49}

Finally, participants discussed the theme of coping and finding hope and meaning, where, despite suffering, they rediscovered the essence of embracing positive outlooks towards life. To them, this was shaped by different factors or support systems they had to utilise, including self-reflection, the experiences of others, and moral and practical support from social networks (including family, compassionate friends, neighbours, and good Samaritans), and spiritual gains and motivation from religiosity, religion, and spirituality. Being able to receive compassionate health care, particularly citing palliative care, where they felt respected and valued and had an opportunity to meet health professionals who were really present and willing to candidly and sensitively listen to them, understand them and address their concerns comprehessively in a dignifiying manner.

Strengths and Limitations

This study has strengths worth acknowledging. Prior to the study, there was no identified documented literature on the prevalence of anxiety, depression, or mental health, in general, among palliative care patients in Uganda. This study is one of the first studies to examine the mental health impacts of COVID-19 pandemic in the context of chronic illness, palliative care and LMIC contexts.

Second, the mixed-methods design used allowed for a broader and deeper examination of the topic to triangulate findings; that is, qualitative findings from the interviews with a purposive sample confirmed almost all quantitative findings. Furthermore, the study was conducted in the largest hospice setting in Uganda, with participants selected from three sites in the capital (Central), Southwest, and Midwest regions of the country. The findings have some reasonable degree of generalizability.

On the other hand, however, the study has some limitations. First, although the study timeframe was sufficient for assessing the psychological experiences of the sample, due to the cross-sectional design, it was not possible to clearly establish causal relationships. For example, we do not know if the outcomes measured in this study are normal or worse for those with an advancing terminal illness during the pandemic. Second, the quantitative part of the study had a small sample size (n=96), which inherently limits the power of the study. The wide confidence intervals observed at multivariate logistic regression indicate the effect of small sample size. Nonetheless, this limitation was, in part, minimised by qualitative interviews to triangulate the findings. Third, additionally, other limitations include possible recall bias, interviewer bias, and selection and social desirability bias.

Conclusion

The results in this study underline the multifaceted and complex mental health impacts of COVID-19 on patients with serious illness, with disruptions in the psychological, social, financial, and physical dimensions of an individual’s quality of life.

The evidence from this study underscores the need to integrate and strengthen palliative care, mental health, psychosocial and spiritual support services as integral components of effective public health emergency response. Services should be gender-sensitive and contextually responsive to general population and vulnerable groups. There is a human rights urgency for healthcare systems and nations to explore, support, and strengthen effective mechanisms and cost-effective and culturally appropriate models of healthcare delivery that can ensure care continuity during emergencies/pandemics, such as home-based care and telehealth care or telemedicine. Survivorship programs including mass and caregiver education and sensitization are needed to avoid stigmatized cultures of care and to enhance positive coping for those facing long-term serious illness.

Decentralising cancer care services and increasing palliative care services is urgently needed to reduce the burden of patients having to travel very long and costly distances to access distant care. Furthermore, there is a need to put in place friendly mechanisms for funded, affordable and sustainable healthcare services (such as health insurance) and streamlined navigation pathways, especially for cancer care to minimise financial and access barriers to healthcare access which exacerbate mental health problems, particularly for underprivileged individuals during public health emergencies.

Funding Statement

The data collection for this study was funded by a research grant from the African Palliative Care Association (APCA). This study did not receive any specific grant for publication from funding agencies in the public, commercial, or not-for-profit sectors.

Data Sharing Statement

The data generated and analysed in this study are presented in this manuscript. Raw data are available from the corresponding author (GN; ngermans16@gmail.com, gnatuhwera@hospice-africa.org) upon reasonable request.

Ethics and Consent Statement

This study was conducted in accordance with the principles of the Declaration of Helsinki. The protocol was reviewed and approved by the Hospice Africa Uganda Research Ethics Committee (HAUREC) reference HAU-2021-7 and the Uganda National Council for Science and Technology (UNCST). Written administrative clearance was obtained from Hospice Africa Uganda, the study setting.

Written (by signature or thumbprint) informed consent was obtained from each of the participants following adequate information provision about study procedures, risks involved and participants’ rights. Participants who reported suicidality and psychological and emotional distress during the study were counselled and appropriately referred to their respective clinical care providers at each of the study sites for ongoing care and monitoring. Interviews were conducted in a private room with each individual participant while pseudo codes were assigned to transcripts to ensure anonymity of participants.

Author Contributions

All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.

Disclosure

The authors declare that they have no competing interests.