Investigating the Needs of Caregivers of Patients Suffering from Chronic Diseases: A Mixed-Method Study
How to cite this article: Katsarou A, Intas G, Pierrakos G. Investigating the Needs of Caregivers of Patients Suffering from Chronic Diseases: A Mixed-Method Study. Indian J Palliat Care 2023;29:285-91.
The objective of this study was to investigate the needs of carers of patients suffering from chronic diseases.
Material and Methods:
The present study is a mixed approach, quantitative and qualitative. The study population consisted of 560 caregivers of patients with chronic diseases. The data collection was done with an improvised needs survey questionnaire, which included 57 questions. The questionnaire surveyed carers ‘financial needs, social needs, psychological needs, and patients’ education needs. The Cronbach-a index of the Patient Needs Survey was 0.956 and that of caregivers was 0.965. Carers’ burden of care was assessed with The Zarit Burden Interview scale. The statistical analysis of the data was done with the statistical program IBM SPSS for Windows version 26.0.
The main diseases of the patients were chronic renal failure (22.6%), multiple sclerosis (19%), cancer (19%), diabetes mellitus (7.1%), dementia (6%), and chronic obstructive pulmonary disease (6%). The majority of patients (82.1%) had health problems for more than 24 months. Caregivers provided 12.5 ± 8.3 h of daycare and cared for patients for more than 24 months (73.2%). Caregivers seek information from health professionals (4.41 ± 1.2), need more information (4.11 ± 1.4), feel stressed about the role of caregiver (3.91 ± 1.3), time available for vacation is limited (3.89 ± 1.4), time available for entertainment is limited (3.80 ± 1.3) and they feel intimidated with the role of carer (3.76 ± 1.3). The caregivers’ charge was 42.4 ± 19.6. Most caregivers reported moderate to severe burdens.
Caregivers experience a lack of clear and comprehensible information about the treatment that caring patients receive, as well as a lack of ongoing care from health professionals.
Long-term care networks
Through the description of the Chronic Care Model theory, it is recognised that a significant part of chronic care takes place outside of formal health-care facilities. The model states that six elements are central to initiatives to improve chronic care: community resources, health-care system, patient self-management, decision support, service delivery system redesign, and clinical information systems. The chronic care model is a multidimensional solution to the complex problem of providing care to patients with chronic health problems. Successful implementation of the chronic care model can lead to better processes and outcomes of care, including clinical outcomes, satisfaction, and costs. These trends appear to apply to adults and children with chronic diseases, such as asthma, diabetes mellitus, heart failure, and depression.
Interventions that include at least one component of the chronic care model are associated with improved outcomes and processes of care for people with asthma, diabetes mellitus, heart failure, and depression. Only subjects with heart failure and depression had improved quality of life.
In Greece, there are no specific studies on the implementation and/or evaluation of chronic care models and there is no organised network of state structures providing long-term care. The purpose of this work was to investigate the needs of caregivers of patients suffering from chronic diseases.
MATERIAL AND METHODS
This study was a mixed approach, quantitative and qualitative.
The study population consisted of 560 caregivers of patients with chronic diseases (>6 months).
First, the demographic, social, and work data of the caregivers were recorded. A questionnaire consisting of 57 questions was created by the researchers, with the answers given on a five-point Likert scale (Strongly disagree, disagree, neither agree nor disagree, agree and strongly agree). The questionnaire included eight questions investigating the financial needs of caregivers, five questions investigating the social needs of caregivers, 23 questions investigating the psychological needs of caregivers, 11 questions investigating the educational needs of caregivers, and ten questions investigating other needs of caregivers. The Cronbach-a index of the caregiver needs questionnaire which was found to be 0.965.
Caregiver burden from caregiving was assessed with the Zarit Burden Scale, which consists of 22 questions that reflect the feelings of people caring for elderly people with dementia. The burden measurement scale has been translated into the Greek language and validated in the Greek population. The Cronbach-a index of the Zarit burden scale was found to be 0.934.
Caregivers were interviewed semi-structured and guided by nine questions. Out of the total number of questions, five questions were about the type of services that they would prefer to receive and four questions were about the educational needs of caregivers.
The participants were voluntarily included in the study and there was no participation cost. In particular, the information and consent forms of the Research Ethics and Ethics Committee of the University of West Attica were given to the participants, to ensure the signed consent of the participants. The distribution, completion, and collection of the questionnaires were done in an anonymous manner. All procedures followed were in accordance with the Helsinki Declaration of 1975, as revised in 2000.
The prevalence and mean for the investigated issues were calculated, while Chi-square tests and t-tests were used to assess differences between caregivers who provided care to patients <2 years versus >2 years. Pearson correlation was used to correlate caregiver burden with caregivers’ needs. Statistical analyses were performed using IBM SPSS Statistics for Windows, Version 25.0. (Armonk, NY, USA: IBM Corp.), statistical significance being considered at P < 0.05.
This study included 560 caregivers, of which 73.2% were women, 28.6% were private employees and 17.9% were retired. The main health problem experienced by patients cared for by caregivers was multiple sclerosis (19.6%) and cancer (28.6%). Caregivers provided 12.5 ± 8.3 h of daily care and 87.8 ± 57.5 h of weekly care. In total, 410 (73.2%) caregivers cared for patients for more than 24 months. [Table 1] presents the demographic, economic, and occupational data of the caregivers.
|Type of job|
|Up to 600||140||25|
|Relation with patient|
|Main health problem of patient|
|Chronic kidney failure||70||12.5|
|Time of care provided to patients|
|Up to 24 months||150||26.8|
|Over 24 months||410||73.2|
Caregivers seek information from health professionals (4.41 ± 1.2), they need more information (4.11 ± 1.4), they feel stressed with the role of caregiver (3.91 ± 1, 3), they have limited time for vacation (3.89 ± 1.4) and for fun (3.80 ± 1.3) and they feel fear with the role of the caregiver (3.76 ± 1.3).
[Table 2] presents the mean and standard deviation of the caregivers’ responses to the questions.
|The insurance fund covers all the costs of medical visits||2.93±1.5|
|The insurance fund covers all the costs of the medicines||3.23±1.6|
|The insurance fund covers all the costs of the supporting materials needed for the treatment (diapers, pads, etc.)||2.12±1.2|
|The government meets the financial requirements of the patients you care for||2.14±1.1|
|You have retired – quit your job due to the caregiving||1.82±1.4|
|You have reduced your working hours due to your duty to provide care||2.21±1.5|
|You need more days off work to provide care||2.73±1.6|
|Your social life has been limited due to caregiving||3.50±1.5|
|Visits from relatives at home have decreased||3.27±1.2|
|Visits from friends at home have decreased||3.32±1.3|
|Your visits to relatives’ homes have decreased||3.34±1.3|
|Your visits to friends’ homes have decreased||3.33±1.4|
|The time available to you for relaxation is limited||3.61±1.3|
|The time available to you for fun is limited||3.80±1.3|
|The time you have available for vacations is limited||3.89±1.4|
|You have more aggressive behaviour than before||2.25±1.3|
|You are more impulsive than before||2.11±1.2|
|Your memory has faded compared to before||2.31±1.3|
|You perform your tasks at a slower rhythm than before||2.41±1.3|
|You feel apathetic or are more apathetic than before||2.18±1.2|
|You feel upset due to your health problem||2.89±1.4|
|You feel sad due to your health problem||2.73±1.4|
|You feel disappointed due to your health problem||2.39±1.2|
|You feel despair due to your health problem||2.36±1.3|
|You feel worried about the future due to your health problem||3.11±1.4|
|You feel that you have not the control of the situation||3.37±1.3|
|You feel overwhelmed with the role of caregiver||2.34±1.3|
|You feel tired with the role of caregiver||3.54±1.5|
|You feel angry with the role of caregiver||2.04±1.2|
|You feel guilty with the role of caregiver||1.89±1.2|
|You feel stressed with the role of caregiver||3.91±1.3|
|You feel fear with the role of caregiver||3.76±1.3|
|You feel embarrassed with the role of caregiver||2.02±0.9|
|You feel a lack of acceptance of the role of the caregiver||1.82±0.9|
|You have all the information you need about the condition of the patient you are caring for||3.29±1.2|
|You have all the information you need about the patient support services available||3.05±1.1|
|You have all the information you need about support services for carers||2.93±1.1|
|You have all the information you need about available resources – material supplies||2.80±1.2|
|You have all the information you need about financial benefits||2.66±1.2|
|You have all the information you need about the disease progression of the patient you are caring for||3.07±1.3|
|You are looking for information from libraries||1.95±1.3|
|You are looking for information on the internet||3.25±1.4|
|You are looking for information from medical papers||1.88±1.4|
|You are looking for information from brochures||1.86±1.4|
|You are seeking information from health-care professionals||4.41±1.2|
|Your relatives do not understand what you are going through||2.80±1.2|
|Your friends don’t understand what you’re going through||2.84±1.2|
|You need home care services||3.55±1.6|
|You need respite services (a service where professionals come to your home for a
few hours so you have time to focus on your career, relationships and other leisure activities)
|You need financial support||3.23±1.6|
|You need access to support services||3.57±1.5|
|You need more information||4.11±1.4|
|You need community support||3.36±1.5|
|You need support from support networks||3.02±1.4|
|You need support from social support groups||3.62±1.4|
|You need to share your feelings with the rest of your family||3.63±1.3|
Caregivers who had provided care for <2 years needed more days off work to provide care (3.20 ± 1.5 vs. 2.56 ± 1.7, P < 0.05), their social life has been limited due to caregiving (3.80 ± 1.3 vs. 3.39 ± 1.6, P < 0.05), the time they have for relaxation (4.07 ± 1.1 vs. 3.44 ± 1.4, P < 0.05), for entertainment (4.13 ± 1.1 vs. 3.68 ± 1.4, P < 0.05) and for vacations is limited (4.20 ± 1.2 vs. 3.78 ± 1.5, P < 0.05), they feel ‘imprisoned’ (3.40 ± 1.5 vs. 3.02 ± 1.5, P < 0.05), they feel significantly more stressed (4.27 ± 1.1 vs. 3.78 ± 1.4, P < 0.05) and fear with the caregiver role (4.00 ± 1.2 vs. 3.68 ± 1.4, P < 0.05), they seek information from the internet (3.47 ± 1.5 vs. 3.17 ±.4, P < 0.05) and they feel uncertain about what to do for their relative (2.93 ± 1.2 vs. 2.41 ± 1.2, P < 0.05). The results of the correlations are presented in [Table 3].
|Question||<2 years||≥2 years||P-value|
|The insurance fund covers all the costs of the supporting
materials needed for the treatment (diapers, pads, etc.)
|You have retired–quit your job due to the caregiving||1.33±0.9||2.00±1.5||0.001|
|You need more days off work to provide care||3.20±1.5||2.56±1.7||0.001|
|Your social life has been limited due to caregiving||3.80±1.3||3.39±1.6||0.005|
|The time available to you for relaxation is limited||4.07±1.1||3.44±1.4||0.001|
|The time available to you for fun is limited||4.13±1.1||3.68±1.4||0.001|
|The time you have available for vacations is limited||4.20±1.2||3.78±1.5||0.002|
|You have more aggressive behaviour than before||2.07±1.3||2.32±1.3||0.041|
|You are more impulsive than before||1.87±1.2||2.20±1.1||0.004|
|Your memory has faded compared to before||1.93±1.2||2.44±1.3||0.001|
|You perform your tasks at a slower rhythm than before||2.13±1.2||2.51±1.3||0.001|
|You feel apathetic or are more apathetic than before||1.93±1.2||2.27±1.2||0.003|
|You feel upset due to your health problem||2.53±1.3||3.02±1.5||0.001|
|You feel disappointed due to your health problem||2.20±1.1||2.46±1.3||0.025|
|You feel despair due to your health problem||2.13±1.1||2.45±1.3||0.009|
|You feel angry with the role of caregiver||1.80±1.2||2.12±1.2||0.005|
|You feel stressed with the role of caregiver||4.27±1.1||3.78±1.4||0.001|
|You feel fear with the role of caregiver||4.00±1.2||3.68±1.4||0.011|
|You feel embarrassed with the role of caregiver||1.80±1.1||2.10±0.9||0.001|
|You have all the information you need about the condition of the patient you are caring for||2.53±0.8||3.24±1.2||0.001|
|You have all the information you need about available resources–material supplies||2.43±0.9||2.93±1.3||0.001|
|You have all the information you need about financial benefits||2.47±1.3||2.73±1.2||0.022|
|You are looking for information on the internet||3.47±1.5||3.17±0.4||0.032|
|You are looking for information from medical papers||1.67±1.4||1.95±1.4||0.030|
|You are seeking information from health-care professionals||4.00±1.6||4.56±0.9||0.001|
|You need financial support||2.87±1.7||3.37±1.6||0.001|
|You need community support||3.93±1.6||4.17±1.3||0.007|
|Burden (Zarit scale)||38.3±16.4||43.9±20.5||0.003|
The caregiver burden was 42.4 ± 19.6. Totally, 35.7% of caregivers were found to have moderate to severe burden, 32.1% of caregivers had mild to moderate, 16.1% of caregivers had severe and 16.1% of caregivers had little or no burden. Caregiver burden was found to be positively associated with age (r = 0.136), hours of daily patient care (r = 0.408), duration of patient care (r = 0.126), financial needs (r = 0.461), social needs (r = 0.609), information needs (r = 0.278), support needs about their work (r = 0.417) and training needs (r = 0.614) [Table 4].
|Hours of patient care, daily||0.408||0.001|
|Patient care time long (2 years)||0.126||0.003|
|Support needs about their work||0.417||0.023|
From the analysis of the interviews, the need for more information emerged.
Information about the patient’s progress, psychological support, specialist visits qualified maintenance and treatment teams Access to doctors, social benefits, information
Several caregivers focused on and emphasised the need for home care
Due to the mobility problems he has, it is difficult to do the examinations he needs anywhere other than at home Nursing home care, help with physical therapy
Immediate service without waiting by the health service units was also emphasised.
Direct service to the health-care organisations Direct and efficient
One issue that was mentioned was the financial support of patients and the financial burden from the provision of health services.
Prompt, free, efficient services Mainly psychological support, as well as universal financial coverage
Totally, 80% of caregivers supported they would benefit from providing services through mobile phones or digital media. Only, 20% of caregivers supported direct contact.
Two-thirds of caregivers would prefer a caregiver to come to the home considering the patients’ better mental health.
Definitely home, for the mental health patient and the rest argued that the patient should be in some structure to provide holistic care.
In a structure that approaches my person in a holistic manner Furthermore, 80% of caregivers reported that they had no training in caring for patients with chronic diseases
I had no relevant training
In addition, all caregivers reported that people with chronic conditions ‘Suffer’ from the health system.
Yes, because it is difficult for them to go to a public hospital for assistance (examinations, X-rays, etc.)
Most of the time, there is no easy access
Participants’ suggestions for improving the quality of health services
provision of free health services
All health services have to be free and immediately accessible
Better organisation and more sensitivity
Yes, the health system can follow the gym system. Same programming, different service
guarantee by the state of the transport of the patient to the hospital
There should be a way to transport him once a year to a hospital for a medical check-up
provision of education and information
More training, various seminars via video conference
More information is needed for the patient, carer and physiotherapists, and nurses
provision of more personnel – health-care professionals
More staff for home nursing and hospitals
Needs more health-care professionals.
The purpose of this study was to investigate the needs of caregivers of patients suffering from chronic diseases. A total of 560 caregivers of patients with chronic diseases were included, the majority of whom had been caring for the patient for more than 24 months. Caregivers seek information mainly from health-care professionals, they need more information, they feel stressed with the role of caregiver, the time available to them for holidays and entertainment is limited and they feel afraid of the role of caregiver. Furthermore, most caregivers reported moderate to severe burdens.
In the present study, caregivers were found to have moderate to high burdens. In cases where care is provided solely by caregivers, the lack of support programs from the state, society, and family members could increase the burden of caregiving responsibility and fatigue for primary caregivers. In another study, the emotional, intellectual, and informational support of caregivers was emphasised. In addition, it was considered important to empower caregivers to deal with the problems associated with caring for patients with chronic diseases as well as managing family caregiving. Despite the need for social support, there are no support programs in Greece, including financial, mental, and social support programs, from government agencies, peers, families, and society for patients with chronic diseases. Information is the main need expressed by families,[11-15] which is in line with the results of the present study. Family members require clear information about the symptoms of the disease, its management, and its expected progression because they have difficulty understanding the initial diagnosis, treatment options, and the course of the disease. Family members also describe uncertainty and insecurity due to the worsening patient’s condition and due to their inability to manage an emergency health situation at home. All of this causes family members great distress.[12,13] Thus, caregivers should receive clear and understandable information about patients’ chronic diseases so that they can understand their nature and how to manage it. On the other hand, informing caregivers also involve a risk. Caregivers think that health-care professionals provide them with a lot of information so that treatment is ‘transferred’ exclusively to caregivers.
It is important for caregivers to have a good relationship with the health-care professionals who provide care to their family members. To achieve this, the same team of health-care professionals should provide care to the patient.[12,13] In many cases, caregivers feel abandoned and have to take care of themselves. Other caregivers express concerns that home visits are not available to all patients, emphasising the need and the importance of expanding home health-care delivery networks. In the present study, it was found that caregivers feel anxiety and fear with the role of caregiver.
Psychological needs refer to the feelings and experiences of family members while caring for a patient.[11-15] Oestreich et al. (2021) reported that the experience of ‘having to care indefinitely’, which reflects family members’ concerns about their ability to manage the patient’s health condition for a long time, causes them frustration and panic. In general, this occurs after family caregivers were wary of the expected course of the disease and treatment outcomes due to patients’ small improvements in health status. Providing care for a long time, as required in chronic illnesses, can lead to changes in family roles, making it difficult for a couple to maintain a relationship after taking on the care of a person from the family environment.
Another feeling constantly expressed by the caregivers of patients with chronic diseases is the uncertainty and worry about the deterioration of health and death of the patients, the insufficient preparation for this, and the difficulty in discussing these topics with the patient, because they believe that such discussions can increase the patient’s pain.[12,13,16] This is in line with our study. Caregivers believe that such discussions should be held by health-care professionals. Furthermore, caregivers believe that these discussions should take place as early as possible, at the beginning of the disease diagnosis.
We found that the fear the caregivers feel and the financial difficulties they face reflect their social needs for support. Social needs include family members’ perceived need for support from social institutions and other people in their family environment.[12,15] Many carers report difficulties in getting help at home from social services. Even in cases where they receive such help, they consider that these services do not meet their needs.
Not a few caregivers claim financial difficulties that prevent patients from having regular access to health services and achieving better control of their symptoms. Furthermore, caregivers report feeling a lack of support for patients, which has negative consequences such as hopelessness and frustration with health service delivery.
In the present study, caregivers provided 12.5 ± 8.3 h of daily care. A study conducted in the Philippines found that caregivers provided moderate care to patients, spending an average of 10.65 h/day and 5.08 days/week. The most difficult barriers they reported when providing care were increased costs, being forced to give up work, and experiencing negative emotions such as stress and physical difficulties. They also had low levels of confidence in deciding when to contact health-care organisations to find patient care services.
The results of the present study showed that caregivers experience a lack of clear and understandable information about the treatment received by the patients they care for, as well as a lack of continuity of care from health professionals. Caregivers experience psychological burdens due to feelings of care over time and constant uncertainty and worry about deteriorating health and death. They, also, have not the necessary support from their family and social institutions.
It is essential not to treat caregivers as a simple patient care resource, but to integrate them into the health-care process. Supportive strategies are needed to address the challenges faced by caregivers of chronically ill patients.
Declaration of patient consent
The Institutional Review Board (IRB) permission obtained for the study.
Conflicts of interest
There are no conflicts of interest.
Financial support and sponsorship
There is no funding.
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