Schizophrenia is a serious physical, social and mental burden not only for the patients but also for their families. According to the latest international market research conducted by Gedeon Richter Plc. in 4 countries (RUS, CZ, BUL, HUN), one of the most worrying problems is that family members struggle with lack of information. 6 out of 10 seek self-help possibilities, and 5 out of 10 are quite anxious to get in touch with their fellow caregivers.
We should not neglect the social impact of the disease either. After receiving the diagnosis, family members find themselves in a completely changed life situation: 6 out of 10 caregivers struggle to hold their jobs, and the financial status of every second person affected will be considerably worse.
The time immediately following diagnosis is critical
Family members play a key role in providing emotional support for the patients (88% average of 4 countries, RUS 83%, CZ 96%, BUL 80%, HUN 94%), and more than half of them provide financial resources (67% average of 4 countries, RUS 68%, CZ 88%, BUL 66%, HUN 68%).
Probably the most critical period for caregivers is when they first face the diagnosis. Our results show that during this period, there is an intense need for emotional support and improved awareness. The initial shock of the diagnosis may ease over time, but sadness and anxiety remain parts of everyday life. At the time of the medical certification of the illness, another highly frustrating burden for the family members is the lack of information (48% average of 4 countries).
Schizophrenia alters the life of family members (too)
The disease undoubtedly affects the quality of life of the caregivers, too. Living with a patient suffering from schizophrenia puts a mental and physical strain on family members, who most of the time can only rely on themselves in manage patientsˈ and their own lives.
The caregivers’ quality of life is highly affected by their limited independence, the financial burdens, the lack of active leisure time as well as the significant drop in their social network.
Caring for the affected family member requires a lot of time and dedication. According to the research, it takes more than 20 hours weekly, which leads to serious changes in their work, i.e., about 20% are forced to work part-time or quit their jobs.
What can best support the „work” of family members
According to the findings of the study, caregiver family members typically seek and find information by themselves, and their need for information is very high. According to the survey, their most important need is to have reliable and easy-to-digest information about the disease (54% average of 4 countries, RUS 73%, CZ 52%, BUL 26%, HUN 56%), its treatment possibilities (44% average of 4 countries, RUS 59%, CZ 50%, BUL 18%, HUN 40%), including possible side effects and lifestyle tips.
Beyond the general disease-related materials, learning self-help methods and sharing experiences with fellow caregivers would help reduce isolation.
Conclusion: by supporting the caregiver, we also help the patient
The presence and role of caregiving family members are practically indispensable.
Family members who take care of patients suffering from schizophrenia make a profound contribution to the patients’ lives. With their continuous effort, patients might get a better chance to recover. However, caregivers themselves feel a strong need for support to overcome the social and financial hardness of their own lives. Learning more about the disease and gaining coping strategies would help them in their role and end their isolation.
The background of the market research
Gedeon Richter launched a comprehensive market research through its trusted partner, Inspira Research which involved 3 target groups (psychiatrists, patients with schizophrenia and caregiver family members) in 4 countries (Russia, Czech Republic, Bulgaria and Hungary). The complexity of the project is indicated by the fact that 102 individual, qualitative in-depth interviews and 675 quantitative questionnaires were processed. This release summarizes the most important findings of the research regarding family members.