Informal Caregivers and their ways of Participation in the System of long-term care in the Czech Republic
Abstract
The paper aims to hear the voice to informal carers in the system of long-term care in the Czech Republic.
Issues related to the provision of long-term care also resonate in other European countries, as expressed by the European Commission in its European Care Strategy (7.9.2022). Underlining the importance of informal care, it states that within the European Union, around 52 million carers, are involved in long-term informal care for a family member or other loved one. Among the recommendations directly mentioned is 'supporting informal carers (European Care Strategy 2022, 2). Carers are indispensable in the long-term care system.
In the Czech Republic, based on current analyses, it is clear that to provide the necessary care for seniors, it will be inevitable to increase the capacity of social and health services and significantly support informal carers (Dragomirecká 2020 et al., 33). The Czech Republic is the country where informal care provides the largest share of long-term care in the European context (Geisseler et al. 2019, 5; Dragomirecká 2020, 35).
On the other hand, in the Czech Republic, their position is not yet clearly defined either legislatively or methodologically, and they are not even understood as a separate target group (Hubíková 2017, 6). Informal caregivers are a group that is positively perceived in society, but the resulting long-term care policy does not bring about a significant improvement in the status of this group, therefore, "one can infer its weak political power" (Dobiášová, Kotrusová 2017, 38). They do not have a strong position or support as a group, and their voice is not heard, or only very weakly. Greater participation of caregivers in political processes could gradually improve their ability to advocate and promote the interests of the informal caregiver group. We also see this empowerment as necessary because current trends in long-term care seek complementary, shared and community-based approaches to care (Kalvach et al. 2014, Geissler et al. 2015, Průša et al. 2021, Janečková 2020a, Dragomirecká et al. 2020). These frameworks build on the collaboration of different components of the care system. Therefore informal carers should be an active and equal subject of such cooperation.
We have partial results of a qualitative study of informal carers.
Based on in-depth interviews, we show how informal carers perceive and describe this position and what caring means to them. We will also look for different possibilities for their participation in the long-term care system.
The results show the possibilities of participation of caregivers in direct care, and then also group participation. We find examples of carers' advocacy through involvement in self-help groups, community planning and advocacy. However, these group options face several barriers and are not yet strong enough.