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Research Article | DOI: https://doi.org/10.31579/2768-2757/166
1Department of Health, Physical Education and Recreation, University of Cape Coast, Cape Coast, Ghana.
2Department of Biostatistics and Epidemiology, University of Health and Allied Sciences, Ho, Ghana.
*Corresponding Author: Anthony Edward Boakye., Department of Health, Physical Education and Recreation, University of Cape Coast, Cape Coast, Ghana.
Citation: Anthony E Boakye, Tekpertey R, (2025), Sentiments, Demands and Knowledge of Informal Caregivers on Willingness to Care for Patients with Chronic Disease in The Ashanti Region, Ghana, Journal of Clinical Surgery and Research, 6(3); DOI:10.31579/2768-2757/166
Copyright: © 2025, Anthony Edward Boakye. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Received: 07 February 2025 | Accepted: 21 February 2025 | Published: 24 March 2025
Keywords: care; chronic; demand; disease; informal caregiving; knowledge; patient; sentiment; willingness
Background: Willingness is not a stable attitude because it decreases and caregivers experience fluctuate from time to time. Objective: This study investigates the informal caregivers’ sentiments, demands, knowledge and willingness to care for patients with chronic disease in the Ashanti Region, Ghana.
Methods: A cross-sectional descriptive survey plan was used with 396 participants. Data were analysed using frequency distribution, Pearson’s chi-squared test of independence and binary logistic regression. Results: Statistically, significant relationship was found in all the hypotheses postulated in the study.
Namely: informal caregivers’ sentiment, informal caregivers’ demands as well as informal caregivers’ knowledge and willingness to care for chronic disease patient. It was emerged that caregivers share sentiments when they realise family members fail to do more to support the patient. It was revealed that pain management as well as basic needs, turning and repositioning the patient were some of the informal care demands. The study unearthed that caregivers feel knowledgeable about providing care for the patient’s specific health needs.
Conclusion: The study recommends that informal caregivers should endeavour to have time for their health while caring for the patient.
Willingness is not a stable attitude because it decreases and caregivers experience fluctuate from time to time [13]. Informal caregivers are expected to be willing to care for relatives with care needs [13]. While caregiving can be a very rewarding and bonding experience, it can also be very demanding. When you are a caregiver it is easier to forget about your own needs while caring for others [24]. This creates a stressful and potentially unhealthy situation for both parties. The emotional stress involved with providing care, particularly for those who are workers can be devastating and even drain the most capable person [29]. The resulting feelings of anger, anxiety, sadness, isolation, exhaustion – and then guilt for having these feelings – can exert a heavy toll including physical problems [5]. It has been established that caregivers suffer more psychological distress and fatigue than non-caregivers. The length of service makes a pronounced difference. Long-term caregivers have much higher rates of physical symptoms like headaches, body aches and abdominal discomfort [31]. Therefore, healthcare’s shift toward patient-centricity and shared decision-making combined with breakthrough advances in treating chronic disease requires that caregivers understand complex therapeutic options in order to offer effective support for patients as they decide on a treatment plan [14]. A lot has been done about the enormous emotional and physical stress that chronic disease caregivers often encounter [22], [26]. While there are countless programmes dedicated to assist caregivers liberate this distress, the everchanging healthcare landscape adds new challenges [6] which makes caregivers face with information needs as soon as their loved ones are diagnosed, when they immediately become immersed in helping to make medical choices for which they are ill prepared [21]. For many, caregiving is a common aspect of life [35]. However, individuals who take on the responsibility of caring for another person due to illness, disability, or declining abilities, it can often be challenging, lonely, costly and exhausting [14]. For instance, as common as caregiving may be, when a loved one receives a serious diagnosis, the path forward may still feel like navigating uncharted territory [35]. Whether you have been designated as your loved one’s primary caregiver or are simply trying to be a supportive friend, knowing the right words to say and actions to take can be difficult [35]. Hence, managing a chronic or advanced illness can consume a lot of time and energy that would otherwise be spent on routine activities. Building a strong support network around yourself and your loved one can help prevent undue stress for caregivers. A lot of caregivers are burning the candle at both ends, which can lead to burnout. People can get stuck in a mindset of toxic positivity where there is no room for uncomfortable emotions [28], [35].
Unfortunately, many caregivers who encounter advanced chronic disease are neither supported nor prepared [2], [27]. Informal caregivers not only have responsibilities for managing patients’ needs but also require support throughout the treatment trajectory or when confronted with their own concerns and emotion [2]. Regrettably, most healthcare systems do not provide adequate support to caregivers [36]. In fact, caregiving concerns increase fatigue among caregivers of patients with chronic disease [2]. Hence, many caregivers perceive that they are not well prepared to navigate through the challenges brought by chronic disease caregiving [11].
Surprisingly, it appears our search did not yield studies centered on the knowledge, demands and sentiments of informal caregivers of patients with chronic disease using quantitative approach within the Ghanaian context. Therefore, it is crucial to investigate informal caregivers’ sentiments, demands, knowledge and willingness to care for chronic disease patients in the Ashanti Region, Ghana by specifically: (1) analysing if informal caregivers’ sentiments influence willingness to care for chronic disease patients in the Ashanti Region, Ghana; (2) ascertaining if caregiving demands of informal caregivers predict willingness to care for chronic disease patients in the Ashanti Region, Ghana and (3) examining whether informal caregivers’ knowledge predicts willingness to care for chronic disease patients in the Ashanti Region, Ghana. The study further hypothesized that informal caregivers’ sentiments, demands and knowledge do not predict willingness to care for chronic disease patients.
Study Setting and Participants
Ashanti Region was chosen as the study site. It was necessary because the region has one of the referral facilities for managing chronic diseases. In the region, the Komfo Anokye Teaching Hospital [KATH] particularly the Oncology Unit was deemed appropriate for the study. Hence, it offers specialize treatment options for chronic disease patients [16], [17], [25]. This facility serves almost half of the Ghanaian population with its regional coverage including Ashanti Region, Bono, Ahafo and Northern Regions of Ghana [16], [17], [25]. In all, the study enrolled 114 informal chronic disease caregivers who brought their patients to the hospital for healthcare services.
Inclusion Criteria
For a caregiver to qualify to participate in the study, he or she must be caring for chronic disease patients; must be primary caregiver; be eighteen years and above; must live in Ashanti Region and must have at least one year experience in caregiving. Therefore, caregivers that do not satisfy the above conditions were excluded from the study.
Study Design and Data source
A descriptive cross-sectional design was utilized for the study. The descriptive design starts by identifying the population of interest, collects the data, and classifies the participant, either as having the outcome or phenomena of interest or not [7]. Moreover, it enables researchers to collect data across a wide range of subjects at a single moment, aiming to capture a comprehensive picture of a particular research question [37]. The design was adopted because the aim of the study fit into it thus, classifying the informal caregivers either as having the willingness to care for chronic disease patients or not considering their sentiments, demands and knowledge regarding the care. Data were obtained in the field from informal caregivers of chronic disease patients using questionnaire. The questionnaire was designed based on literature and already developed survey instruments were reviewed and items that found to help measure some constructs of this current study were adopted.
Sample and Sampling Technique
A sample of 400 were enrolled in the study with the help of [18] Table for determining sample size for a finite population. The authors expressed that a finite population of 50000, 381 is ideal for a sample. Therefore, considering the number of cases (52,863) Ashanti Region recorded in 2016 [12], then, 381 could be used as an ideal sample for the study. However, due to refusal and incomplete responses, a non-response rate of 5% was added which made the actual sample to be (381×0.05) + 381 = 400.05. Therefore, the sample size for the study was 400.
With the help of systematic sampling approach, these 400 participants were selected. The approach was deemed appropriate because it allows participants to be selected at regular intervals from a sampling frame or without a frame [23]. The intervals are carefully chosen to ensure an adequate sample size [1], [3]. The study needed a sample of 400 from a chronic disease patient population of 52,863. So, we calculated our sample interval as follows: 52863/400 = 132.16. Random number 3 was generated between 1 and 132 which served as the 1st participant so starting from the entrance of the oncology unit of KATH the 1st participant was selected follow by the 2nd participant 3 +132 = 135th. The process continued until the last participant was reached.
Measures
Caregivers’ sentiment indicators include [guilt, grief, burnout, resentment, anxiety sadness/depression and anger/frustration]; informal care demands indicators include [physical and psychological burden, opportunity costs, and training] and knowledge indicators include [perceived knowledge, resources and training, and caregiver confidence] [9], [34]. Willingness to care indicators include [relationship, attitude, time spent with care recipient, commitment, and empathy] [38], [10].
Data Collection Procedure
Data collection commenced on 26th of September 2022 and ended on 25th of August, 2022 after The Research Ethics Committee of the University of Health and Allied Sciences has approved the research protocol with the help of two trained research assistants of which their services were compensated for. In all, one month was used to collect the data. Questionnaire was used to solicit data from the participants at the KATH. All the participant that took part in the study consented orally. The average time spent on each questionnaire in the field was 25 minutes.
Reliability and Validity
In order to ensure reliability in the study, careful measures were put in place to ensure that data were solicited from the right source with a comprehensive coverage. Aside that, data collection methods, data cleaning and preprocessing as well as standardized metrics were keenly observed to help minimize errors. In terms of validity, appropriate time scale and methodology was chosen taking into consideration the characteristics of the study subjects. Further, the study adopted the most suitable sample method and lastly, the participants that took part in the study were not pressured in any ways to select specific responses among the answer sets. All these measures were put in place to help achieve validity.
Data Processing and Analysis
First of all, data collected from the field were cross checked for errors. Items that requested multiple responses and the open-ended questions were recoded to ease entry. The data were then transferred to SPSS version 27 for cleaning and processing. After cleaning the data, 396 responses were analysed. Frequency distribution, Pearson’s chi-squared test of independence and binary logistic regression analyses were run. The frequency distribution was used to summarise participants socio-demographic characteristics, sentiments, demands, knowledge and willingness to care for chronic disease patients. The Pearson’s chi-squared test of independence was used to test the hypothesis that there is no statistically significant relationship between informal caregivers’ sentiments, demands, knowledge and willingness to care for chronic disease patients. The binary logistic regression analysis was run to make predictions from the explanatory variables studied in the study.
Ethical Consideration
To ensure that ethical issues were managed well in the study, participation was made voluntary and participants were told they can decline at any time. In the field, oral informed consent was obtained from participants and was witnessed by the participant’s any elderly person who directly related to the participant. Further, in the field, all data that could identify participants such as names, addresses and telephone numbers were avoided. In addition, ethical clearance (with ID number UHAS-REC A./111/21-22) to conduct this study was sought from The Research Ethics Committee of the University of Health and Allied Sciences, Ho, Ghana.
Table 1 presents information on the socio-demographic characteristics of the research participants. The study participants composed of 72.7
Informal caregivers’ sentiments and willingness to care for a chronic disease patient
The study attempted to unravel sentiments, demands and knowledge of informal caregivers towards their willingness to care for patients with chronic disease. Participants demonstrated utmost knowledge on their sentiments. It appeared that participants express their sentiment in guilt in various ways thus felt not doing enough for the patient, yelling at the patient and unfair treatment. The reason for participants accommodating that they feel they do not do enough for the patient could probably be that they do not avail themselves all the time due to numerous responsibility they attend to during the day. This finding confirms Perach, Read, Hicks, Harris, Rusted, Brayne et al.’s (2023) study that the caregiver endeavours to provide care that ensures optimal quality of life for the patient. However, it might result in a compromised quality of life for the patient. Further, participants that intimated that they yell at the patient and treat them unfairly reason could probably be that they are fed up with the patient due to persistence frustration and loss of hope in the patient’s condition. The study revealed that caregivers express their grief in loss of future plans. The reason for this finding could be that those caregivers do not get the time to build upon their future plans and that they presume if such continues, their future might be threatened. Again, it could be that such caregivers spend a lot on the patient which makes them to think that they might be able to realise their future plans.
The study brought to the fore that majority of the caregivers’ experience burnout largely from stress. The reason for this finding could be that caregivers are mostly occupied with responsibility and that they do not get time to rest. This finding affirms Perach, Read, Hicks, Harris, Rusted, Brayne et al.’s (2023) study that isolation and diminished social interactions due to the additional demands on caregivers time and energy can contribute to stress. Hence, impacting the quality of life for both caregivers and care-recipients. It emerged in the study that caregivers become angry when family members fail to do more to support the patient. The reason for this finding could be that it is only the caregivers that bear the expenses of the patient as a result of that they find disappointment among the patient’s family members. This finding is in line with a study by Okikiade Oyegbile (2024) that family members may offer support when the caregiving journey begins but may dissipate as the condition worsens or does not improve and the care needs intensify.
It was unearthed that caregivers’ express anxiety whenever they are worried. The reason for this finding could probably be that when caregivers realise that they are not getting support from family members of the patient, they become worried which eventually perpetuate anxiety among them. Further, it could be that these caregivers think about their future and they come into terms that there is no way they can realise their future plans which makes them to be anxious. This finding is in line with Caputo’s (2021) study that informal caregivers can experience a variety of emotions such as anger at being forced to provide care and having to give up work.
Participants demonstrated fare knowledge about what makes them to be sad/depressed. The most cited was sad thoughts, changes in eating habits and crying. The reason for this finding could probably be that they are always left alone with the patient which eventually makes them to always confined in the house and become lonely hence, they cannot meet with friends to enjoy the beauty of the day. It could also mean that these caregivers do not get any social support, encouragement and warmth from others which could wipe of their tears and motivate them in their pursuance of their duty. This finding corroborates to Zhang, Sun and Yao’s (2023) study that social interactions with family and friends can also be compromised, with intense and prolonged caregiving hence excludes informal caregivers from participating in social interactions/events, including religious and cultural ceremonies, which they may previously have been enjoying.
Statistically significant relationship was found between informal caregivers’ sentiments and willingness to care for a chronic disease patient therefore, the null hypothesis was not confirmed. This finding motivated me to have a confidence that an effect or pattern exists, and it made sense to me to do further analysis of the data to discover what the effect or pattern seems to be. However, it was unfortunate that in the binary logistic regression, none of the variables studied under sentiments was significant.
Informal caregivers’ demands and willingness to care for chronic disease patient
As the study tries to analyse caregivers demands towards willingness to care for a chronic disease patient revealed pain management; basic needs, turning and repositioning the patient. The reason for this finding could probably be that pain management; basic needs, turning and repositioning the patient drain caregivers a lot and that do not permit them have time to attend to other duties let alone to have time for themselves. Participants cited lose earnings and lose career as opportunity costs for caring for a chronic disease patient. The reason for this finding could be that caregivers do not get time to perform other activities which could earn them something likewise they do not get the time to indulge in any career venture which they can hold onto for their daily bread in the future. The overwhelming majority that intimated they were trained to perform the patient caregiving task reason could probably be that such training was carried out at out-patient department. It could also me that such caregivers are professional nurses and that knew the practices involving caring for a chronic disease patient.
It was revealed that the psychological pain caregivers experience is sadness and loneliness and feeling overwhelmed with responsibilities. This signifies that caregivers are always in a dilemma due to the workload on them. Further, it could be that the workload does not permit them make friends which affect their social life. Spending a lot of time thinking about what will happen in the future and spending a lot of time thinking about the loved one’s health and what will happen in the future are the causes of stress and worry to caregivers. The reason for this finding could be that caregivers are in suspense about what will be the outcome of their patient’s health hence each day what they observe about their patient health status does not motivate them. This finding is in line with a study by Hawkley and Cacioppo (2010) study that family caregivers are often so overwhelmed with caregiving that they do not have the time to engage socially with people in the community or the energy to participate.
It was revealed that majority of the caregivers experience financial strain. The reason for this finding could probably mean that these caregivers are overburdened financially and do not have any occupation that provides them with income on daily or monthly bases. This finding is in line with Martins, Rocha, Monteiro, Barbosa, Cardoso, de Oliveira da Silva et al.’s (2023) study that the financial strain of caregiving to a chronically sick person can be significant, due to the cost of treatments and medications, and home care products associated with personal hygiene or specialized food. Impaired relationships and experiencing hopelessness were found to be some of the caregivers demands. The reason for this finding could be that caregivers do not get the time to make friends which has affected their social life and makes them feel hopeless in life. This finding corroborates to Lwi, Ford and Levenson’s (2023) study that experiencing loneliness is a common outcome of caregiving due to the substantial time and effort it required to provide care, often around the clock.
Statistically significant relationship was found between informal caregivers’ demands and willingness to care for a chronic disease patient. Therefore, the null hypothesis was rejected. The rejection of the null hypothesis confirmed that pattern or effect exist among the explanatory variables studied under caregivers’ demands and willingness to care for a chronic disease patient which calls for further analysis. Unfortunately, no statistically significant relationship was found between the explanatory variables and the outcome variable.
Informal caregivers’ knowledge and willingness to care for a chronic disease patient
Assessment of caregivers’ knowledge towards willingness to care for chronic disease patient revealed that caregivers feel knowledgeable about providing care for the patient’s specific health needs. The reason for this finding could be that caregivers have practiced caregiving for long and that are experienced when it comes to caring for the chronic disease patient. This finding is in line with Sarakshetrin, Ekkarat, Chinkhanaphan and Samphawamana’s (2015) study that caregivers are more confident in caring for the elderly with hypertension when they have more knowledge. Majority of the caregivers claimed they have understanding of the patient’s condition/diagnosis and have adequate knowledge of its emergency procedures. It could be that these caregivers have lived long with the patient and that have understood the signs and symptoms surrounding the condition/diagnose which they are also abreast of the emergency procedures. Therefore, if the condition escalates, they are equal to the task.
Caregivers ascribed that they have the skills to handle the physical tasks required in caregiving. The reason for this finding could be that they have been trained on how to discharge their duties as caregivers. All the caregivers cited that they have received a formal training related to caregiving. The reason for this finding could be that healthcare providers do well to train who so ever accompany a chronic disease patient to hospital. Though, some caregivers opted that they would attend a training program if offered. The reason for this finding could be that the caregivers are not satisfied with the training they have had and that lacks some basic skills concerning patient’s caregiving.
Caregivers intimated that they have enough support from healthcare professionals (e.g., doctors, nurses, therapists) in managing care. The reason for this finding could be that healthcare professionals willingly provide support to informal caregivers whenever the need arises. Overwhelming majority express that they often feel overwhelmed or uncertain about providing care. The reason for this finding could be that these caregivers lack the skill and the enthusiast to care for a sick person. Caregivers remarked that they are likely to seek help or advice if they are not sure about a caregiving task or situation. The reason for this finding could probably be that these caregivers do not want to make mistakes in discharging of their duties.
Statistically significant relationship was found between informal caregivers’ knowledge and willingness to care for a chronic disease patient. Therefore, the null hypothesis was nullified. The implication for this finding was that the variables studied under informal caregivers’ knowledge were not independent of each other.
The study was conducted cross-sectionally and lends itself to descriptive survey plan. The study recruited 396 participants with the help of systematic sampling technique. Statistically significant relationship was found in all the hypotheses postulated in the study. Namely: informal caregivers’ sentiment, informal caregivers’ demands as well as informal caregivers’ knowledge and willingness to care for chronic disease patient. The study recommends that informal caregivers should endeavour to have time for their health while caring for the patient.
I thank the respondents for sacrificing their time to take part in the study and the research assistants for helping in the data collection.
Ethical Approval
Ethical approval (with ID number UHAS-RCE A./10/111/21-22) to conduct the study was taken from the Research Ethics Committee of the University of Health and Allied Sciences, Ho, Ghana.
Consent to participate in the Study
In the field, verbal consent was taken before a participant could take part in the study.
Consent to Publish
Participants were told that the study was strictly academic and that the results would be published for the purposes of contributing to building academic literature.
Competing Interests
No competing interest existed.
Funding
The study was self-funded
Availability of Data and Materials
The data is only available to the author hence it was a primary data.
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