Investigating the Needs of Caregivers of Patients Suffering from Chronic Diseases: A Mixed-Method Study

INTRODUCTION

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.^[1] Successful implementation of the chronic care model can lead to better processes and outcomes of care, including clinical outcomes, satisfaction, and costs.^[2] These trends appear to apply to adults and children^[3] with chronic diseases, such as asthma,^[4] diabetes mellitus,^[5] heart failure^[6], and depression.^[7]

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.^[8]

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

RESULTS

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.

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.

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].

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].

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 organization

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.

DISCUSSION

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.^[10] 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.^[16] 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.^[16]

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.^[14] 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.^[16] 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.^[14] 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.^[16]

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.^[15]

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.^[16]

Not a few caregivers claim financial difficulties that prevent patients from having regular access to health services and achieving better control of their symptoms.^[16] Furthermore, caregivers report feeling a lack of support for patients, which has negative consequences such as hopelessness and frustration with health service delivery.^[15]

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.^[17]

CONCLUSION

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.