Depression and anxiety in family caregivers of cancer patient: a cross sectional study in Nepal

Abstract

Introduction:

With the growing incidence of cancer, the role of caregivers has become increasingly critical in ensuring comprehensive patient care. However, the prolonged and sustained nature of caregiving responsibilities can adversely affect the mental health of caregivers. This study aims to explore the prevalence of depression and anxiety among caregivers of cancer patients.

Methods:

We enrolled 101 caregivers of cancer patients from a tertiary care hospital in Kathmandu in this study and obtained demographic information from the patients and their caregivers. The prevalence of depression and anxiety was assessed by the use of Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) score, respectively. We used Chisquare/Fischer’s exact test to analyze association between variables.

Results:

Out of 101 caregivers, 80 (79.2%) were males and 21(20.8%) were females. Overall, 58.4% had either mild, moderate, or severe anxiety according to GAD-7 scale. Overall, 28.7% had either mild moderate or moderately severe depression according to the PHQ-9. Male gender, relationship with the patient, the patient’s ECOG performance score had significant association with higher severity of anxiety. Closer relationships with patients showed higher severity of depression.

Conclusion:

Anxiety and depression were considerably present among caregivers of the patient. Interventions aimed at reducing the mental health impact of cancer should focus not only on the patient but also to their caregiver.

Introduction

Cancer is becoming a chronic illness and requires not only medical care but also long and sustained psychological, emotional, and economical support from their family members. Family members have been described as co-sufferers in the battle against cancer^[1]. Data from WHO shows that new cancer patients have forecasted to be 29.5 million by 2040^[2]. With increasing cancer patients, the number of families living with and taking care of these patients will increase^[3].

Different studies in different countries have found the prevalence of depression ranging from 20.4% to as high as 53%, and anxiety ranging from 4% to 32.8%^[4,5]. in caregivers of cancer patients. Sociodemographic factors and quality of life are predictors of anxiety and depression in family caregivers^[6]. Different systematic reviews have shown the prevalence to be 47% of anxiety whereas 42.08% and 42% of depression^[7,8].

HIGHLIGHTS

• The prevalence of anxiety and depression in caregivers was 58.4% and 28.7%, respectively.

• The severity of anxiety increases with ECOG performance score of the patient.

• Clinicians must be aware of the mental health issue a caregiver might be facing and screen accordingly for the mental health-related problems.

While a study by P Thapa et al in Nepal reported the prevalence of depression and anxiety in cancer patients to be 28% and 40%, respectively^[9], it is equally important to assess the prevalence of mental health issue in family members who are often the sole care provider. In South Asian Country like Nepal where taking care of ill family member is considered a duty as per cultural and societal norms, understanding the psychosocial burden on caregivers is essential to formulate the effective cancer care strategies.

Methodology

We conducted a descriptive cross-sectional study in a tertiary-level hospital in Kathmandu which has separate oncology department and a day care unit for chemotherapy services. Ethical approval was obtained from Institutional Review Committee (Registration no.443). The study was conducted from August 2021 to August 2022. Caregivers who are 18 years or greater in age, who had been caring for more than 1 month, and had given informed consent for the study were included in the study, while caregivers who had mental health issues prior to diagnosis of cancer and not meeting inclusion criteria were excluded.

Non-probability convenient sampling method was used. Data were taken consecutively from oncology ward and day care unit.

Sample size was calculated as follows:

n = Z²pq/e² = (1.96² × 0.50 × 0.50)/0.1² = 96.04

where n = sample size, Z = 1.96 at 95% confidence interval, p = considering prevalence to be 50%, q = 1—p = 0.5, e = standard error (taking 10%).

Calculated sample size was 96. We took 5% as a non-response rate, so we took a total of 101 cases for our study.

Data collection was done after comprehensive explanation of study purpose and written informed consent from the caregivers. The participants were assured of confidentiality by explaining the data obtained would be used only for study purposes and the name would not be recorded and data would be kept confidential.

A structured self-made questionnaire on demographic and socio-economic profile of caregivers and patients and standard questionnaire – Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 scale (GAD 7 scale) – were used to collect data from the study population^[10,11]. These questionnaires were administered by the researcher during face-to-face interviews. These questionnaires were available in English language. They were translated to Nepali by bilingual experts. Again, translation was done from Nepali to English to ensure meaning did not change. Lastly, review of translation was done by mental health experts.

Statistical analysis

The data was entered and analyzed using Statistical Package for Social Sciences version 25. The descriptive analyses of categorical variables were expressed as frequencies and percentages. A Chi-square/Fischer’s exact test was conducted to determine if there were differences in PHQ-9 and anxiety groups between variables.

This article has been reported in line with STROCSS criteria^[12].

Result

Characteristics of cancer patients

The mean age of cancer patients was 58.1 years (±15.1). The participants were almost equally distributed among gender. The majority of the cancer patients (45.5%) were illiterate. Almost two-third of the patients were recently diagnosed within 6 months (Table 1).

Table 1.

Characteristics of cancer patient

Characteristics	N(%) or mean ± SD
Age	58.1 ± 15.1
Gender
Male	51 (50.5%)
Female	50 (49.5%)
Education
Illiterate	46 (45.5%)
Primary level	34 (33.7%)
Secondary level	20 (19.8%)
Bachelor and above	1 (1.0%)
Duration of diagnosis
Less than 6 months	64 (63.4%)
More than 6 months	37 (36.6%)
Occupation after diagnosis
Not changed	88 (87.1%)
Changed	6 (5.9%)
Left job	7 (6.9%)

The most common types of cancer among patients were lung cancer (12.9%), colorectal cancer (11.9%), blood-related cancer (11.9%), and gastric cancer (9.9%) (Table 2).

Table 2.

Type of cancer in the patients

Type of cancer in the patients	N (%)
Blood related cancer	12 (11.9%)
Breast cancer	9 (8.9%)
Cervical cancer	4 (4.0%)
Colorectal	12 (11.9 %)
Lung carcinoma	13 (12.9%)
Gastric carcinoma	10 (9.9%)
Oro and nasopharyngeal carcinoma	4 (4.0%)
Urinary bladder carcinoma	9 (8.9%)
Ovarian carcinoma	5 (5.0%)
Pancreatic carcinoma	4 (4.0%)
Gall bladder carcinoma	4 (4.0%)
Others	15 (14.9%)

The majority (60.4%) of patients fall under ECOG 2–3, meaning they experience moderate to significant limitations in physical function. The ECOG 2 group (34.7%) is the largest, showing that many patients are still managing personal care but unable to work (Table 3).

Table 3.

ECOG performance score of the patient

ECOG	N (%)
0: Fully Active, able to carry on all pre-disease performance without restriction	14 (13.9%)
1: Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature.	26 (25.7%)
2: Ambulatory and capable of all self-care but unable to carry out any work activities.	35 (34.7%)
3: Capable of only limited self-care, confined to bed or chair more than 50% of waking hours	24 (23.8 %)
4: Completely disabled. Cannot carry on any self-care. Totally confined to bed or chair.	2 (2.0%)

Characteristics of caregivers of cancer patients

The mean age of caregivers of cancer patients was 40.1 years (±12.9). The majority of the participants were male (79.2%) and married (87.1%). More than half (57.4%) of the caregivers were children. The expenditure spent on patient care was less than 200k (in Nepali rupees) in 58.4% (Table 4). All the caregivers were informal caregivers, either spouse, children, parents, siblings, or grandchildren.

Table 4.

Characteristics of the caregivers of cancer patients

Characteristics	N(%) or mean ± SD
Age	40.1 ± 12.9
18–39	54 (53.5%)
40–59	34 (33.7%)
60–79	13 (12.9%)
Gender
Male	80 (79.2%)
Female	21 (20.8%)
Education
Illiterate	6 (5.9%)
Primary level	24 (23.8%)
Secondary level	61 (60.4%)
Bachelor and above	10 (9.9%)
Marital status
Married	88 (87.1%)
Single	13 (12.9%)
Occupation after diagnosis
Not changed	62 (61.4%)
Changed	2 (2.0%)
Left job	37 (36.6%)
Relationship with patient
Spouse	25 (24.8%)
Children	58 (57.4%)
Parent	6 (5.9%)
Siblings	8 (7.9%)
Grandchildren	4 (4.0%)
Expenditure in patient care (In Nepali rupees)
Less than 200k	59 (58.4%)
200k–600k	34 (33.7%)
More than 600k	8 (7.9%)

A total of 41.6% of participants exhibited minimal anxiety, whereas 58.4% reported either mild, moderate, or severe anxiety, as measured by the GAD-7 scale. Similarly, the majority of participants (71.3%) had normal or minimal levels of depression, while 28.7% experienced mild, moderate, or moderately severe depression, as assessed by the PHQ-9 scale (Table 5).

Table 5.

Frequency of depression and anxiety in caregivers

General Anxiety Disorder 7 scale	N(%)
Minimal anxiety	42 (41.6%)
Mild anxiety	40 (39.6%)
Moderate anxiety	18 (17.8%)
Severe anxiety	1 (1%)
Patient Health Questionnaire 9
Normal or minimal depression	72 (71.3%)
Mild depression	19 (18.8%)
Moderate depression	9 (8.9%)
Moderately severe depression	1 (1.0%)
Severe Depression	0(0%)

A significant association was observed between GAD-7 scores and gender, with a higher proportion of anxiety reported among male caregivers (p = 0.023).

Similarly, the caregiver’s relationship with patients was significantly associated with anxiety levels. Those closer with the patient (spouse, children, parent) experience higher levels of anxiety. In addition, there is a statistically significant difference in ECOG distributions among groups being compared (Table 6). No significant associations were found between anxiety levels and variables such as education, marital status, or financial expenditure on patient care.

Table 6.

Association between GAD 7 scale and different variables

GAD 7 scale	Minimal anxiety	Mild anxiety	Moderate anxiety	Severe anxiety	P-value
Gender					0.023
Male	38	30	12	0
Female	4	10	6	1
Age					0.174
18-39	23	25	6	0
40-59	14	9	10	1
60-79	5	6	2	0
Education					0.072
Illiterate	1	2	2	1
Primary level	13	5	6	0
Secondary level	24	29	8	0
Bachelor and above	4	4	2	0
Marital Status					0.558
Married	37	33	17	1
Single	5	7	1	0
Relation with patient					0.002
Spouse	11	7	7	0
Children	28	24	6	0
Parent	0	1	4	1
Siblings	3	4	1	0
Grandchildren	0	4	0	0
Expenditure in patient care					0.140
Less than 200k	30	22	7	0
200k–600k	9	15	9	1
More than 600k	3	3	2	0
ECOG					0.038
Fully Active, able to carry on all pre-disease performance without restriction	10	2	2	0
Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature	12	7	6	1
Ambulatory and capable of all self-care but unable to carry out any work activities	9	21	5	0
Capable of only limited self-care, confined to bed or chair more than 50% of waking hours	10	10	4	0
Completely disabled. Cannot carry on any self-care. Totally confined to bed or chair	1	0	1	0

The relationship to the patient has a significant effect on depression levels. Closer individuals (spouse, children, and parent) show higher depression severity. There is no significant association between gender, education, marital status, and expenditure in patient care with depression levels (Table 7).

Table 7.

Association between PHQ-9 and different variables

PHQ 9	Normal or minimal depression	Mild depression	Moderate depression	Moderately Severe depression	P-value
Gender					0.818
Male	38	9	4	0
Female	34	10	5	1
Gender					0.786
18–39	41	9	4	0
40–59	22	7	4	1
60–79	9	3	1	0
Education					0.327
Illiterate	3	1	1	1
Primary level	16	5	3	0
Secondary level	44	12	5	0
Bachelor and above	9	1	0	0
Marital Status					0.450
Married	62	18	7	1
Single	10	1	2	0
Relation with patient					0.001
Spouse	18	5	2	0
Children	45	11	2	0
Parent	0	3	2	1
Siblings	5	0	3	0
Grandchildren	4	0	0	0
Expenditure in patient care					0.709
Less than 200k	43	10	6	0
200k–600k	23	8	2	1
More than 600k	6	1	1	0
ECOG					0.846
Fully Active, able to carry on all pre-disease performance without restriction	10	3	1	0
Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature	19	3	3	1
Ambulatory and capable of all self-care but unable to carry out any work activities	25	8	2	0
Capable of only limited self-care, confined to bed or chair more than 50% of waking hours	17	4	3	0
Completely disabled. Cannot carry on any self-care. Totally confined to bed or chair	1	1	0	0

Discussion

Cancer is a stressful event for both the patients and their family members. In countries like Nepal, where cultural and societal norms emphasize familial responsibility, the burden of care is frequently shared among family members throughout the diagnostic, treatment, and follow-up phases. Caregiving is often regarded as a moral and cultural duty, and healthy family members are expected to provide physical, emotional, and logistical support to their ill relatives^[13].

Our study demonstrated a noticeable prevalence of depression and anxiety in caregivers of cancer patients. All the caregivers in our study were unpaid family care givers and there were no paid or volunteer caregivers.

Based on participant’s characteristics, the mean age of the participants in our study was 40.1 (± 12.9) years. This is consistent with findings of other studies in Nepal, such as that by Sharma BP et al, which reported a mean caregiver’s age of 36.1 (± 13.1) years and by Belapurkar P et al, which reported 36.1 (±10.5) years^[13,14]. Our study found no significant association between the age of the caregiver and the severity of anxiety and depression. However, the study by Sharma BP et al. revealed that family caregiver who was greater than 36 years old had twice odds of depression then the patient aged less than 36^[14]. Similarly, a cross-sectional study in Pakistan exhibited that individuals aged 18–44 had higher level of depression than other age groups^[15].

In our study, the majority of caregivers (79.2%) were male, which aligns with findings by Belapurkar P et al. and Z.K. Moghadam^[13,16]. In contrast, Sharma BP et al. found that most caregivers were female in their study conducted in Nepal^[14]. A significant association was observed between male gender and increased severity of anxiety. The reason might be because, in many cultures like Nepal, caregiving is generally gender specific, with males typically assuming the role of decision-maker in the family. This cultural orientation places a significant burden on male members in terms of providing social and economic support^[17].

Overall, 36.6% of the participants in our study had left their job following diagnosis of cancer in a family member. In cross sectional study done by Belapurkar P et al.in India, 63.7% were not working considering easy fatiguability^[13].

In our study, most patients were classified under ECOG performance status grade 2. In contrast, a study by Z.K. Moghaddam reported that the majority of patients were under ECOG grade 0, while a study conducted by R.D. Nipp found most patients to be in ECOG grade 1^[16,18]. Our findings indicated that anxiety severity increased with higher ECOG grades; however, the ECOG performance status was not significantly associated with the severity of depression. A longitudinal study in Germany by C Sewtz et al. revealed that depending on ECOG performance score at the time of admission, there was significant deterioration of anxiety and depression at home^[19].

In our study, caregiver’s education, marital status, and expenditure had no significant association with severity of depression and anxiety. This aligned with the study by P Belapurkar et al, which also noted no significant association of level of depression and anxiety with education^[13]. However, Sharma BP et al noted significant risk of anxiety and depression among caregivers with primary and secondary education^[14].

Our study revealed that 28.7% had either mild, moderate, or moderately severe depression, while 58.4% had either mild, moderate, or severe anxiety. A study done by Sharma BP et al revealed that 73% had depression and 80% had anxiety in informal caregivers seeking care from non-government and government hospitals^[14]. It is imperative to note that our study is from army medical center which provides most of the medical treatment for free, we expect that psychological issue pertaining to economic factors to be lesser. One reason for less prevalence in our study could be because of less expenditure on health services. Although Sharma BP et al found no significant association of financial status with severity of depression and anxiety, financial factors are seen to make a significant difference in the patient’s psychological needs^[20]. Family caregivers may face challenges including insufficient funds, fear of losing loved ones, feeling of loneliness, heavy workloads, inadequate rest, and poor self-care^[13,14].

Most of the patients were newly diagnosed in less than 6 months which may explain higher anxiety in family caregivers. This could be because family and friends are entrusted into a new caregiving chapter with little preparation as soon as the diagnosis^[18]. Moreover, in Nepal, there is a lack of emphasis on the psychological impact of cancer on the patient and family, which limits psychological screening for patients with cancer and their caregivers. This is even more increased by the lack of a psychological support system for patients with cancer and their caregivers^[21].

Evidence indicates that supportive interventions, including psychoeducation, skills training, and therapeutic counseling, can help alleviate caregivers’ burdens and support their information needs, coping strategies, physical functioning, psychological well-being, and quality of life^[14]. In addition, attitude and behavioral change interventions should be used to encourage and motivate caregivers. Non-government organizations, social workers, and female community health volunteers could be mobilized for social support and a healthy environment for caregivers.

The utilization of a relatively small sample size particularly drawn from a single healthcare facility limits generalizability of findings. So, further research endeavors should be considered to conduct longitudinal investigations on more extensive and diverse population cohorts. As all the participants were from army families, selection bias may arise. Also, this research was conducted in an institute which provides free services to the seekers due to which mental health issue pertaining to financial cost of treatment may be less. Although we translated standard GAD7 score and PHQ score into Nepali format, there could be response bias.

This study further extends previous research about mental health issues in family members of cancer patients and fills the gap in knowledge about ECOG performance status and anxiety in caregivers and needs to address it. As the treatment cost is free in most cases, this study could help to navigate the difference in prevalence of mental health issues, when financial aspects are supported by the government and private hospitals. This article possibly would motivate the clinicians and health workers to make necessary and timely intervention to reduce the anxiety and depression in those caregivers.

We recommend future prospective studies with larger sample sizes that help enhance healthcare professionals to better understand and identify family caregivers’ needs in the early phase of illness so that early intervention can be provided to the family care givers.

Conclusion

The prevalence of depression and anxiety in caregivers is high. Interventions aimed at reducing the psychiatric effects of cancer should focus not only on the patient but also to the caregiver.

Ethical approval

This study was approved from Institutional Review Board of Nepalese Army Institute of Health Sciences with registration number of 443.

Consent

Written informed consent was obtained from the participants for the publication of this cross-sectional study. A copy of the written consent is available for review by the editor-in-chief of this journal on request.

Sources of funding

The study did not receive any grant from funding agencies in the public, commercial, or not-for-profit sectors.

Author contributions

E.A.: Conceptualization, data curation, formal analysis, methodology, data collection, resources, software, writing-original draft preparation, writing-review and editing. S.P.A.: Conceptualization, literature review, analysis, supervision, writing-editing, and review. N.L.: Literature review, formal analysis, writing-review, and editing. D.A.: Conceptualization, literature review, review, and editing. K.D.: Literature review, writing-original draft, review, and editing. H.P., A.M.B.: Literature review, data collection, review, and editing. S.M.: Data analysis, writing-original draft, review, and editing. L.W.: Literature review, data analysis, supervision, review, and editing. All the authors read and approved the final manuscript.

Conflicts of interest disclosure

The authors report no conflicts of interest.

Guarantor

Egesh Aryal and Suman Prasad Adhikari.

Registration of research studies

Not applicable.

Provenance and peer review

Not commissioned, externally peer reviewed.

Data availability statement

Available upon reasonable request.