Family Caregiving in Cancer Care in Togo: Tasks, Consequences, and Unmet Needs ()
1. Introduction
Cancer remains a significant global public health issue due to its high rates of morbidity and mortality. In 2022, approximately 20 million new cancer cases were diagnosed worldwide. Cancer is a leading cause of death globally, accounting for nearly 10 million deaths in 2022 [1].
Togo is a low-income African country. According to the Global Cancer Observatory (GLOBOCAN) estimates, 5.500 new cancer cases were diagnosed in the country in 2022, with projections indicating an increase to over 10,200 cases by 2040 [2].
Patients diagnosed with cancer often depend on caregivers for support in daily activities, medication management, transportation, meal preparation, financial management, medical care, and emotional well-being [3]. Many of these patients are cared for at home by family caregivers. A family or informal caregiver is an unpaid family member, friend, or neighbor who provides assistance to someone with an acute or chronic condition, helping to manage various tasks [4].
Often inadequately trained or unprepared, these caregivers perform various support activities and face many challenges related to their role. Indeed, caregiving usually takes a significant toll on caregivers’ physical and mental health, as well as on their social and financial stability [5]. Many caregivers report a range of unmet needs, including psychological support, as well as material and financial aid [6].
In a review, Gambe et al. [7] describe the roles and experiences of informal caregivers providing care for people with advanced cancer in Africa, including the impact of cancer care on individuals and communities, and the support available for caregivers. In Morocco, Lkhoyaali et al. [8] examined the emotional, psychological, and financial effects of caregiving, while also highlighting specific positive outcomes. In Kenya, Mwangi et al. [9] showed that these impacts are influenced by various factors, including caregivers’ socioeconomic status, income level, and relationship to the patient.
However, in Togo, no research has documented how cancer affects informal caregivers. This lack of data prevents the official recognition of their role and hinders the development of policies tailored to their needs.
To explore this issue, the study aims to describe the tasks performed by caregivers of cancer patients, identify the specific burdens these caregivers face, and determine their unmet needs in supporting patients with cancer.
2. Methods
2.1. Setting
Togo is a low-income country in West Africa with an estimated population of 8.278 million. This cross-sectional study was conducted from March to May 2024 at the oncology unit of Sylvanus Olympio Teaching Hospital, the country’s national referral center. The adult oncology unit, which has a capacity of ten beds, was established in January 2019.
2.2. Study Population
The sample population included all informal (unpaid) caregivers or companions of patients who were hospitalized or attending consultations at the Medical Oncology Unit of Sylvanus Olympio Teaching Hospital, providing regular, unpaid support during the study period.
Participants were eligible if they met these criteria:
1) They lived with the patient or provided regular support at home.
2) They actively coordinated the patient’s medical care.
All participants provided informed consent.
We excluded paid professional caregivers, those who do not have regular and direct contact with the patient, and caregivers who provided incomplete or inconsistent responses.
2.3. Data Collection
A purposive sampling method was used to recruit caregivers of patients attending outpatient clinics or those hospitalized during the study period.
Data was collected through structured interviews that utilized a standardized questionnaire.
The data collected are:
Caregiver sociodemographic characteristics: age, gender, relationship to the patient, length of caregiving, employment status, and education level.
Patient characteristics: cancer type and disease stage.
Caregiver tasks, consequences experienced, and needs: assessed using the CaTCoN questionnaire. Cancer Caregiving Tasks, Consequences, and Needs (CaTCoN) is a 72-item questionnaire that evaluates cancer caregiving tasks, their consequences, and caregivers’ needs, primarily related to information from and communication with healthcare professionals [10]. Most items include four ordinal response options and a “don’t know/not relevant” category.
The CaTCoN was translated and culturally adapted according to international guidelines. Bilingual experts independently performed a forward–backward translation to ensure linguistic accuracy. Cultural adaptation involved review by a panel of local clinicians and caregivers to confirm clarity and relevance. The pre-final version was tested with a small group of caregivers to evaluate understandability and acceptability. Internal consistency was assessed using Cronbach’s α, which demonstrated satisfactory reliability, supporting the instrument’s validity in the local context. Data collection included face-to-face interviews during consultations and hospital stays, as well as supervised self-administration for literate caregivers who preferred this option.
2.4. Data Analysis
Data analysis was carried out using SPSS software, version 27.0.1.0. Descriptive statistics were presented as frequencies, means, and standard deviations. Only descriptive statistics are reported. Inferential analyses were not performed because the study focused on providing an overview of caregiver experiences rather than testing hypotheses or establishing relationships, making descriptive data enough to meet the research objectives.
2.5. Ethical Considerations
The research followed the principles outlined in the Declaration of Helsinki. Ethical approval was obtained from the Faculty of Health Sciences Ethics Committee at the University of Lomé. All participants provided informed consent, and anonymity and confidentiality were strictly preserved.
3. Results
This article reports the results concerning caregiving workload (CaTCoN item 1a, 1b, 1c, 3, 4), caregiving consequences (CaTCoN item 6a, 6b, 6c, 6d, 6e, 6f, 6g, 7, 8, 9), and caregiving needs (CaTCoN item 10, 11, 14a, 14h, 14i, 16, 29, 32, 34, 37, 38, 39, 40, 41)
3.1. Characteristics of Caregivers and Patients
Between March and May 2024, 128 caregivers were approached, of whom 123 (96.09%) agreed to participate in the study and completed the questionnaire. They included 60 men (48.8%) and 63 women (51.2%) (sex ratio = 0.95).
The average age of the caregivers was 40 ± 5 years, with ages ranging from 22 to 62 years. The most common age group was [32 - 41] years. Forty-eight caregivers (39%) were the patients’ children (sons or daughters). Spouses (husbands or wives) accounted for 30.1% (n = 37) of the caregivers. Seventy-six caregivers (61.8%) had supported their loved ones for more than six months, while 38.2% (n = 47) had been assisting for less than six months. Most caregivers (n = 60; 49.2%) had a university-level education, and 38.5% (n = 47) had a secondary-level education.
The most common cancers among the patients were breast cancer (n = 52; 42.3%) and gynecological cancers (n = 22; 17.9%). Fourteen patients (11.4%) had colorectal cancer, and 6.5% (n = 11) had prostate cancer. Of the assisted patients, 61% (n = 75) were at a metastatic stage, while 39% (n = 48) were at a localized stage. The sociodemographic profiles of family caregivers and patients are presented in Table 1.
3.2. Tasks of Caregivers for Cancer Patients
More than three-quarters of the caregivers (n = 96; 78%) provide some or a lot of practical help to the patients. Seventy-three caregivers (59.4%) provide some or a lot of personal care to the patients. Almost all caregivers (96.8%) offer psychological support to the patients. One hundred and two caregivers (83.6%) feel overwhelmed by responsibilities related to home care, with 28.5% (n = 35) feeling this to a high degree, 33.3% (n = 41) to some degree, and 21.2% (n = 26) to a low degree. More than a third of caregivers (n = 49; 39.8%) spend some or a lot of time transporting the patients.
Table 1. Caregivers and patients’ characteristics.
Variable |
Categories |
n (%) |
Gender of caregivers |
Male |
60 (48.8%) |
Female |
63 (51.2%) |
Age group (years) |
22 - 31 |
20 (16.3%) |
32 - 41 |
54 (43.9%) |
42 - 51 |
27 (21.9%) |
52 - 62 |
22 (17.9%) |
Mean ± SD |
40 ± 5 (range: 22 - 62) |
Relationship to patient |
Daughter or son |
48 (39.0%) |
Spouse |
37 (30.1%) |
Brother or sister |
26 (21.1%) |
Other (e.g., friend, cousin) |
12 (9.8%) |
Duration of caregiving |
>6 months |
76 (61.8%) |
≤6 months |
47 (38.2%) |
Education level of caregivers |
No formal education |
5 (4.1%) |
Primary |
11 (8.9%) |
Secondary |
47 (38.2%) |
University |
60 (48.8%) |
Type of cancer in the patient |
Breast |
52 (42.3%) |
Uterine |
17 (13.8%) |
Cervix |
5 (4.1%) |
Colorectal |
14 (11.4%) |
Prostate |
11 (8.9%) |
Other |
24 (19.5%) |
Cancer stage |
Localized (Stage I-III) |
48 (39.0%) |
Metastatic (Stage IV) |
75 (61.0%) |
3.3. Caregiving Consequences
More than half of the caregivers (n = 78; 61.8%) reported that the patient’s disease caused them significant stress, and 29.3% (n = 36) reported some negative impact on their physical health.
Eighty-five caregivers (69.1%) reported that they lacked sufficient time for their family, and more than three-quarters of the caregivers (n = 95; 77.2%) stated that they had insufficient time for friends and acquaintances due to the patient’s illness.
Seventy-three caregivers (59.4%) were not working during the caregiving period. Among those who were employed, 17 (13.8%) never managed to take authorized leave, and 38 (30.9%) faced work-related problems due to absenteeism.
One hundred ten caregivers (89.4%) out of 123 experienced financial consequences because of their loved one’s cancer. Among them, 52 (42.3%) were affected significantly. For seventy percent of caregivers (n = 86), their loved one’s cancer significantly increased their awareness of what is essential in life. The patient’s cancer led more than half of caregivers (n = 69; 56.1%) to make positive changes, and it caused 84.6% of caregivers (n = 104) to value their relationships with others.
Caregiving tasks and their consequences are summarized in Table 2.
Table 2. Caregiving tasks and consequences.
CaTCoN items |
Frequencies (%) |
Caregiving tasks |
|
|
|
|
|
1. To what extent have you had to provide |
None |
A little |
Some |
A lot |
Don’t know/ not relevant |
1a. Practical help to the patient? |
6(4.9) |
18 (14.6) |
33 (26.8) |
63 (51.2) |
3 (2.5) |
1b. Personal care to the patient? |
17 (13.8) |
29 (23.6) |
28 (22.8) |
45 (36.6) |
4 (3.2) |
1c. Psychological support to the patient? |
4 (3.2) |
8 (6.5) |
28 (22.8) |
83 (67.5) |
|
3. Have you felt that you have had too much
responsibility about home care |
Not at all |
To a low degree |
To some degree |
To a high degree |
Don’t know/ not relevant |
|
16 (13) |
26 (21.2) |
41 (33.3) |
35 (28.5) |
5 (4) |
4. Have you spent time transporting the patient? |
No, not at all |
Yes, a little |
Yes, some |
Yes, a lot |
Don’t know/ not relevant |
|
45(36.7) |
27 (21.9) |
25 (20.3) |
24 (19.5) |
2 (1.6) |
Caregiving consequences |
|
|
|
|
|
|
|
|
|
|
|
6. Has the patient’s cancer disease |
No, not at all |
Yes, a little |
Yes, some |
Yes, a lot |
Don’t know/ not relevant |
6a. Caused you stress? |
5 (4.1) |
18 (14.6) |
24 (19.5) |
76 (61,8) |
|
6b. Hurt your physical health |
38 (30.9) |
47 (38.2) |
36 (29.3) |
2 (1.6) |
|
6c. It means that you have not had enough time for the rest of your family |
33 (26.8) |
33 (26.8) |
31 (25.2) |
21 (17.1) |
5 (4.1) |
6d. Meant that you have not had enough time for your friends/acquaintances |
20 (16.3) |
31 (25.2) |
27 (21.9) |
37 (30.1) |
8 (6.5) |
6e. Increased your awareness of the essential things in life |
4 (3.2) |
10 (8.1) |
21 (17.1) |
86 (70) |
2 (1.6) |
6f. Caused you to make positive changes |
8 (6.5) |
19 (15.5) |
25 (20.3) |
69 (56.1) |
2 (1.6) |
6g. Made you value your relationship with other people more |
15 (12.2) |
25 (20.3) |
21 (17.1) |
58 (47.2) |
4 (3.2) |
Continued
7. Have you been able to take time off, get a leave of absence from work, or make similar arrangements to the extent it has been necessary |
Always/almost always |
Mostly |
Only sometimes |
Rarely/never |
Don’t know/ not relevant |
|
3 (2.4) |
10 (8.2) |
20 (16.3) |
17 (13.8) |
73 (59.3) |
8. Has the illness meant that you have had to be absent from work so much that it has posed problems at your workplace |
Not at all |
To a low degree |
To some degree |
To a high degree |
Don’t know/ not relevant |
|
12 (9.8) |
8 (6.5) |
23 (18.7) |
7 (5.7) |
73 (59.3) |
9. Have you experienced negative financial consequences of being a caregiver? |
Not at all |
To a low degree |
To some degree |
To a high degree |
Don’t know/ not relevant |
|
10 (8.1) |
18 (14.6) |
40 (32.5) |
52 (42.3) |
3 (2.5) |
3.4. Needs Expressed by Caregivers
Caregivers expressed a need for information in various areas. To some extent, 41.5% (n = 55) of caregivers lacked knowledge about how the healthcare system in Togo works in relation to cancer treatment. One hundred eight caregivers (87,8%) also noted that there was insufficient information about potential psychological reactions in people with cancer. For thirty-five of them (28.5%), this lack of information was considered very high. Seventy-nine caregivers (64.2%) reported, to some degree or a high degree, a lack of information on the best ways to support a person with cancer.
Regarding interactions between caregivers and healthcare professionals, several caregivers reported feeling ignored by healthcare providers. A total of 46 caregivers (37.4%) stated that providers had never paid attention to them. Additionally, 52.9% (n = 65) said that their health status had never been a concern for the professionals involved. Moreover, 54 caregivers (43.9%) mentioned that healthcare professionals had never inquired about their ability to cope with the caregiving role.
More than half of caregivers (n = 71; 57.7%) reported needing assistance from healthcare professionals to find practical ways for themselves and the patient to manage the illness. Fifty-three caregivers (43.1%) wanted to connect with other caregivers at the hospital, and half of the caregivers (n = 62; 50.4%) looked for a space to discuss their concerns with them.
Thirty-one caregivers (25.2%) expressed a need to see a psychologist, but only two had the opportunity. Nearly two-thirds of caregivers (n = 78; 63.4%) wanted a designated space in hospitals where they could rest, and they also needed a place to stay overnight (n = 74; 60.2%). Forty-six caregivers (37.4%) felt the need to take, to some extent, a break from practical tasks related to the illness, but never felt that such a break was possible. Over three-quarters of caregivers (n = 95; 77.2%) expressed a need to maintain a “normal life” while caring for others, but half of them (n = 46; 37.4%) did not believe this was possible.
Caregiving needs are outlined in Table 3.
Table 3. Caregiving needs.
CaTCoN items |
Frequencies (%) |
Caregiving needs |
|
|
|
|
|
10. Have the healthcare professionals paid attention to you? |
Always/ Almost Always: 23 (18.7) |
Mostly: 29 (23.6) |
Only sometimes: 21 (17.1) |
Rarely /Never: 46 (37.4) |
Don’t know/ not relevant: 4 (3.2) |
11. Have the healthcare professionals shown interest in how you have been feeling? |
Always/ Almost Always:17 (13.8) |
Mostly: 15 (12.2) |
Only sometimes:17 (13.8) |
Rarely /Never: 65 (52.9) |
Don’t know/ not relevant: 9 (7.3) |
14. Have you, as a caregiver |
|
|
|
|
|
14a. Lacked information about how the health care system works, about treating cancer? |
To a high degree: 27 (21.9) |
To some degree: 51 (41.5) |
To a low degree: 27 (21.9) |
Not at all: 12 (9.8) |
Don’t know/ not relevant: 5 (4.9) |
14h Lacked information about the best ways to help and support a person with cancer? |
To a high degree: 36 (29.3) |
To some degree: 43 (34.9) |
To a low degree: 25 (20.3) |
Not at all: 6 (4.9) |
Don’t know/ not relevant: 13 (10.6) |
14i. Lacked information about likely psychological reactions in a person with cancer? |
To a high degree: 35 (28.5) |
To some degree: 50 (40.6) |
To a low degree: 23 (18.7) |
Not at all: 2 (1.6) |
Don’t know/ not relevant: 13 (10.6) |
16. Have you needed help from healthcare professionals to find out the best way for you and the patient to handle the illness in practical terms? |
No: 52 (42.3) |
Yes: 71 (57.7) |
|
|
|
Has your need for help been met? |
To a high degree: 24 (33.8) |
To some degree: 29 (40.8) |
To a low degree: 7 (9.9) |
Not at all: 6 (8.5) |
Don’t know/ not relevant: 5 (7) |
32. Have you wanted contact with other caregivers in the hospital? |
No: 70 (56.9) |
Yes: 53 (43.1) |
|
|
|
Has your need for contact with other caregivers been met |
To a high degree:
6 (11.3) |
To some degree: 27 (51) |
To a low degree: 12 (22.6) |
Not at all: 3 (5.7) |
Don’t know/ not relevant: 5 (9.4) |
34. Have you needed to see a psychologist as a consequence of the patient’s illness? |
No: 92 (74.8) |
Yes: 31 (25.2) |
|
|
|
Have the health care professionals offered you the opportunity to see a psychologist? |
No: 29 (93.5) |
Yes: 2 (6.5) |
|
|
|
37. Have you needed physical surroundings at the hospitals that made it possible for you to: |
|
|
|
a. Withdraw? |
No: 45 (36.6) |
Yes: 78 (63.4) |
|
|
|
Has your need been met? |
To a high degree:
7 (9) |
To some degree: 36 (46.2) |
To a low degree: 24 (30.8) |
Not at all: 8 (10.2) |
Don’t know/ not relevant: 3 (3.8) |
b. Stay overnight? |
No: 49 (39.8) |
Yes: 74 (60.2) |
|
|
|
Has your need been met? |
To a high degree:
2 (2.7) |
To some degree: 19 (25.7) |
To a low degree: 22 (29.7) |
Not at all: 26 (35.1) |
Don’t know/ not relevant: 5(6.8) |
c. Talk to other caregivers |
No: 61 (49.6) |
Yes: 62 (50.4) |
|
|
|
Has your need been met? |
To a high degree:
3 (4.9) |
To some degree: 26 (41.9) |
To a low degree: 22 (35.5) |
Not at all: 9 (14.5) |
Don’t know/ not relevant: 2 (3.2) |
Continued
38. Have you needed to be able to take a break from the practical tasks in connection with the illness? |
To a high degree: 12 (9.7) |
To some degree:46 (37.4) |
To a low degree: 22 (17.9) |
Not at all: 28 (22.8) |
Don’t know/ not relevant: 15 (12.2) |
39. Have you felt that you could take a break from the practical tasks? |
To a high degree:
2 (1.6) |
To some degree: 25 (20.3) |
To a low degree: 30 (24.4) |
Not at all: l46 (37.4) |
Don’t know/ not relevant: 20 (16.3) |
40. Have you needed to lead a “normal” life at the same time as you have been a caregiver? |
To a high degree: 26 (21.1) |
To some degree: 48 (39) |
To a low degree: 21 (17.1) |
Not at all: 9 (7.3) |
Don’t know/ not relevant: 19 (15.5) |
41. Have you felt that you have the possibility to lead a “normal” life at the same time as being a caregiver? |
To a high degree:
4 (3.2) |
To some degree: 20 (16.3) |
To a low degree:34 (27.6) |
Not at all: 46 (37.4) |
Don’t know/ not relevant: 19 (15.5) |
4. Discussion
This is the first study to specifically focus on the experiences of caregivers of cancer patients in Togo.
The purpose of this research was to describe the tasks caregivers perform, identify the burdens they face, and evaluate their unmet needs. The study was conducted among individuals directly involved in caregiving at the medical oncology unit of Sylvanus Olympio University Hospital—the only public facility of its kind in Togo. Because it treats most adult cancer patients throughout their entire course of treatment, this setting allowed us to gather a representative sample.
By including caregivers of patients with different types of cancer, we collected a wide range of experiences and backgrounds. This diversity enhances the relevance of our findings to the broader population of oncological caregivers. Some data was obtained through interviews, offering in-depth, qualitative insights. Anonymity and confidentiality were strictly upheld to reduce potential information bias.
The caregivers in this study were relatively young, with an average age of 40 years, and there was nearly equal gender distribution (sex ratio = 0.95). This balanced gender distribution differs from many studies that report a predominance of female caregivers [7] [11] [12]. The gender balance in our study may be due to the high proportion of female patients and the fact that many caregivers were spouses. The fact that patients’ children made up the main category of caregivers (39%) highlights the intergenerational aspect of caregiving. Regarding education, most caregivers hold a secondary or university-level degree, which may enhance their adaptability and understanding of medical issues. Additionally, most assisted patients suffered from breast and gynecological cancers, with a significant proportion (61%) being at a metastatic stage. These cancer types align with the national epidemiology of cancer in our country [13]-[15].
As reported in earlier studies [12] [16] [17], many caregivers in our study also faced a heavy caregiving workload involving practical assistance, emotional support, and transportation. In our country, informal caregivers often carry full responsibility without institutional support, leading to significantly higher stress levels. Similar to other African countries [7], caregiving is usually motivated by cultural, social, and religious values and is regarded as a moral duty rooted in family ties and gratitude toward parents.
Providing cancer care is complex and affects every aspect of the caregiver’s physical, psychological, social, and economic life [7]. Caregivers may experience adverse effects from caregiving, including physical exhaustion, disruption of personal plans, emotional challenges, and socioeconomic burdens [18].
Nearly one-third of caregivers reported experiencing some or many adverse physical health effects due to their caregiving responsibilities. This is significantly higher than the 16% reported by Lund et al. [16] in Danish caregivers.
Cancer places a heavy emotional burden on caregivers. In our study, more than half of the caregivers (61.8%) reported feeling highly stressed by their loved one’s illness. This stress is worsened by the challenge of balancing caregiving duties with other family and work responsibilities. Similarly, Lkhoyaali et al. [8] in Morocco found that 79.3% of caregivers experienced anxiety, with 57% linking it to the fear of losing the patient. In a study on unmet needs of cancer caregivers in India, Muralidharan et al. [12] noted significant stress among caregivers. In a Ugandan study involving 284 caregivers, 35.2% were clinically depressed, and 48.2% showed clinical symptoms of anxiety [19]. High levels of depression, anxiety, and burden were also reported among caregivers of cancer patients in Iran [20]. These findings show that fear and anxiety are common among caregivers worldwide. In Togo, these issues are exacerbated by financial difficulties, limited access to healthcare, and a lack of psychological support for caregivers. The view of cancer as a serious and often terminal disease adds to this psychological distress, especially since diagnoses usually happen at an advanced stage.
Compared to non-cancer caregivers, those caring for cancer patients may face higher financial burdens related to caregiving, especially for out-of-pocket costs like prescription medications [21] [22]. The economic burden has two primary components: higher costs for medical treatment, supplies, and daily necessities, and decreased income due to fewer work hours or job loss [23].
Financial strain was identified as a significant source of stress and burden among caregivers in Africa [7]. In our study, 89.4% of caregivers reported experiencing adverse financial effects due to their caregiving duties. Of these, 42.3% were significantly impacted.
Financial difficulties were also reported in India, with 90% of caregivers facing adverse economic conditions and 84% needing financial counseling [12]. In Togo, this situation is worsened by widespread poverty, limited public health funding, the absence of universal health coverage, and no subsidies for cancer treatment.
Caregiving can be particularly challenging for employed individuals who must balance work duties with caregiving responsibilities. In a study on the difficulties faced by employed informal caregivers, Xiang et al. [23] found that employed caregivers experience considerable financial consequences, including lost time and income. They also encounter various work-related issues, including decreased productivity, absenteeism, and mental health effects like stress, depression, social isolation, and loss of self-identity. Regarding professional effects, in our study, 13.8% of caregivers were unable to take authorized leave, and 31% experienced work-related problems due to absenteeism. In contrast, Lund et al. [16] found in Denmark that only 4% of caregivers lacked access to leave, and 16% had work-related issues. These differences emphasize the impact of varying labor protections and support systems between developed and developing countries.
A cancer diagnosis goes beyond being just a medical diagnosis and affects relationships and family dynamics. The role of the caregiver influences their identity, social network, and ability to participate in social activities [7]. In South Africa and Ghana [24] [25], caregivers reported having to limit their time outside the home, time with friends, community events they attend, and romantic relationships. Our findings show that 69.1% of caregivers felt their family time was significantly reduced due to caregiving. More than three-quarters of the caregivers (77.2%) lacked time for friends or social connections. Consistent with our results, reduced time for family and friends was also reported by Zavagli in Italy [17], Lund in Denmark [16], and Muralidharan in India [12]. These findings suggest that caregivers worldwide struggle to balance caregiving with their personal and social lives.
Despite numerous challenges, caregiving also provided positive experiences.
Indeed, in a narrative review of 23 studies on caregiving outcomes in cancer family caregivers, Rezaei et al. [18] highlight positive effects of caregiving, such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth. In our study, 70% of caregivers reported that their loved one’s illness deepened their awareness of what is essential in life. The patient’s cancer led more than half of caregivers to make positive changes, and it caused 84.6% of caregivers to value their relationships with others. Similar findings were reported in Morocco, where Lkhoyaali et al. [8] observed positive aspects of caregiving in 80% of participants. Conversely, 23% of Danish caregivers reported little to no increased awareness of life’s priorities, and 36% indicated little to no improvement in their relationships [16].
In Africa, cancer often acts as a communal experience that strengthens family ties and community bonds [7]. Caregiving is considered a moral obligation. In Europe, where cancer care is more structured, the experience tends to be more personal. The heavy impact of cancer in Togo, due to limited access to healthcare, may lead caregivers to reevaluate their values and focus more on personal relationships, unlike in Europe, where better medical infrastructure might lessen this effect.
Many caregivers have unmet needs related to interacting with healthcare professionals and receiving accurate and sufficient information.
Caregivers often feel ignored by health professionals. Our study shows that 37.5% of participants felt unimportant, 52.9% believed their health was overlooked, and 43.9% faced a lack of support in managing their caregiving duties. These findings align with previous studies, which have reported caregivers’ dissatisfaction with interactions with healthcare professionals [17] [26].
In our study, caregivers expressed a significant need for better information. Approximately 41.5% felt inadequately informed about how the health system operates, which is higher than the 29.9% reported by Zavagli et al. [17]. Furthermore, 87.8% of them noted that there was insufficient information about possible psychological reactions in people with cancer, and seventy-nine caregivers (64.2%) expressed to some or a high degree a lack of information on the best ways to support a person with cancer. In Togo, cancer awareness efforts are limited and concentrated in urban areas. The shortage of trained oncology professionals further restricts access to reliable information and hampers caregiver education. In line with our findings, a study from Norway also reported a need for information and support in most caregivers of cancer patients [27]. In a review of fifty studies on the unmet care needs of advanced cancer patients and their informal caregivers, Wang et al. [28] found that the most frequently identified unmet needs for informal caregivers were information needs, including illness and treatment information, as well as care-related information. Additionally, psychological and social needs were also identified.
Regarding psychological support, our data indicates that a quarter of caregivers expressed a need to consult a psychologist. In contrast to our study, only 10% of Indian caregivers required psychological support [12]. Regardless of the cultural context, caregivers often experience emotional burdens that warrant professional support. However, in Togo, psychological services are rarely sought, partly due to stigma and a lack of availability. Even when such services exist, they tend to focus on patients rather than caregivers. Notably, only two of the caregivers who expressed a need for psychological support had the opportunity to access it.
Approximately 65% of caregivers, including 37.4% to some degree, reported a need for respite care. Zavagli et al. [17] found that 39% of Italian caregivers, including 16% to some extent, reported a similar need. The disparity may be due to the availability of structured support in Italy, such as financial allowances and temporary care facilities. In Togo, the absence of such support systems leaves caregivers overwhelmed. In Denmark, 67% of caregivers needed to lead a “normal life while being a caregiver” [16]. Among Indian caregivers, the desire to lead a “normal life” was fundamental, with 60% indicating a strong need [12]. In this study, more than 77% of caregivers expressed a need to maintain a “normal life” while caring for others, yet half doubted its feasibility. Indeed, handing over care responsibilities can be perceived as abandonment due to powerful cultural expectations of family duty.
In our country, informal caregivers play a significant role in outpatient care. They are involved not only during diagnosis and treatment but also at the end of life because of limited palliative care services.
In a review, Alam et al. [29] propose the CARES framework to guide care for caregivers in an oncology setting: Considering caregivers as part of the entire care team, Assessing the caregiver’s situation, perceptions, and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement.
Implementing this framework in our practice can improve the experience of caregivers for cancer patients in our country. Caregivers would benefit from enhanced psychological support through counseling services, training for healthcare professionals, and inclusion in public health policies. Practical steps such as home-based programs, legal recognition, respite services, support groups, and stress management resources could strengthen their role. Increased attention and better communication from healthcare professionals are also crucial to ensure comprehensive support.
5. Study Limitations
This study has several limitations. First, the presence of the interviewer might have influenced participants’ responses despite efforts to establish a comfortable environment. The translation of the questionnaire from English to French could have introduced subtle biases, even with a certified translator. Participants’ emotional states during the survey may also have affected their responses, potentially leading to self-reporting bias. Some responses show varying levels of understanding of the questions.
6. Conclusion
Cancer is a complex, chronic disease that is often hard to manage daily for both patients and their caregivers. As the primary source of support for many patients, caregivers play a vital role throughout the entire care process.
This cross-sectional descriptive study emphasizes the impact of cancer on families in Togo, focusing on the tasks, burdens, and unmet needs of caregivers.
The findings reveal that in Togo, cancer patients mainly rely on their close relatives, especially children and spouses, for support. These caregivers provide vital assistance but face significant responsibilities without enough institutional backing. This causes emotional and financial stress, along with negative impacts on their professional, social, physical, and mental health. Despite these difficulties, caregivers also identify positive aspects of their role, such as gaining a deeper understanding of life’s priorities and strengthening their personal relationships. They emphasize the need for psychological support, opportunities for rest, access to trustworthy information, and proper training to manage their caregiving responsibilities more effectively.
This study provides a crucial foundation for the future development of evidence-based interventions to support caregivers of cancer patients in Togo.