Gaps in end-of-life care and lack of support for family carers in Poland and Central Eastern Europe

Krakowiak, Piotr

doi:10.1177/2632352420958001

Cited by 11 publications

(8 citation statements)

References 24 publications

(34 reference statements)

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“…Being responsible for everything can take a toll on caregivers, rendering them into a state of feeling powerless, less able to understand themselves in their role as the agents of effective, compassionate care. The scarce institutional support for informal (family) caregivers and a lack of cooperation are relatively common for many other countries in the CEE region [ 23 ]. The successful development of end of life care services in Poland, while limited to cancer patients, is rather an exception from the rule that gaps in equal access to palliative care and integration of services.…”

Section: Discussionmentioning

confidence: 99%

“…Informal care giving is a common phenomenon in Central and Eastern Europe (CEE). The lack of support for informal caregivers in particular, and the need for integration of EoL care seem to be urgent in CEE palliative care context [ 23 ]. For example, Baji and colleagues demonstrated the impact of demographic changes in Poland and Eastern Europe, and changes to the familial system of care for the elderly and dying urge the necessity for action in EoL care [ 24 ].…”

Section: Introductionmentioning

confidence: 99%

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What does it mean to be the main caregiver to a terminally ill family member in Lithuania?: A qualitative study

et al. 2022

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Introduction Family caregivers are a great resource for providing dignified end-of-life care for terminally ill patients. Framed from the perspective of role theory and the relational nature of providing and receiving care, study objectives were as follows: (1) to capture caregivers’ understanding of the process of taking on the role of main caregiver, (2) to conceptualize their understanding of the functions that they assume while being the main caregivers, and (3) to understand how they experienced the consequences they confronted. Methods The research team employed the methodological strategy of descriptive thematic analysis using a semi-structured interview guide. The sample consisting of 33 family caregivers was recruited using purposeful and snowball sampling strategies in 2020. Interview data was analyzed using content-driven inductive thematic analysis. Results The data analysis revealed four main themes that structure the process of becoming the main care giver of a terminally ill family member and the meaning of the caregiver role: (1) inaccessibility and mistrust of public care services for persons with terminal illness, (2) moral obligations and responsibilities of immediate family and friends, (3) cultural traditions, (4) the caregiver feels responsible for everything. The themes describe the social role of family caregiver in social context, address the process of taking on the role of caregiver and living with systemic corruption. Conclusions Recognition of caregiving experiences is essential in planning better systems, in direct practice and in confronting corruption. The study suggests the need for open communication, accessibility of quality services, and the recognition of caregivers as care-team members. The larger implication is that the increasing numbers of distressed caregivers and aging populations can be considered as public health populations, and thus addressable through public health methods.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

What does it mean to be the main caregiver to a terminally ill family member in Lithuania?: A qualitative study

et al. 2022

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“…Informal caregivers are indeed more likely to face social exclusion marked by low life and/or income satisfaction due to their diminished potential to acquire gainful employment on the labor market, on the one hand, and isolation as a result of the high amount of hours devoted to care, on the other [Greenwood et al, 2018;Maguire et al, 2019;Brandt et al, 2022]. In Mediterranean or Eastern European countries where the family is the primary provider of assistance, the risk of impoverishment is heightened because the economic and social support provided by families cannot fully compensate for the traditional lack of public service provision [Krakowiak, 2020;Tur-Sinai et al, 2020;Casanova & Lillini, 2021].…”

Section: Discussionmentioning

confidence: 99%

Long-term care needs and the risk of household poverty across Europe: A comparative secondary data study

Casanova

Lillini

Moreno

et al. 2022

Preprint

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Population ageing and rising poverty are two of the most pressing issues today, even in Western European nations. In parallel, the risk of poverty is also growing as a result of the recent global economic crisis and the COVID-19 containment measures, which have reduced individual and collective productivity and had a negative impact on household income. This study intends to explore the relationship between long-term care (LTC) needs and the risk of poverty at the household level in eight European countries selected to represent the different care regimes in Europe. The main international databases were scoured for study variables. These variables were categorized according to the following conceptual areas: home care, residential care, health expenditure, service coverage, cash benefits, private services, population, family, education, employment, poverty, disability and care recipients, and life expectancy. The statistical analyses were conducted as described hereafter: analysis of the Pearson’s Bivariate Correlation between the dependent variable and all other variables; a Multivariable Linear Regression Model between the Poverty Index (dependent variable) and the covariates identified in the preceding step; a check for geographical clustering effects and a reduced Multivariable Linear Regression Model for each identified European cluster. The variables that addressed the risk of poverty pertained to the area of policy intervention and service provision (e.g., index of the service’s territorial coverage and the proportion of 65+ people receiving integrated home care). Rising private out-of-pocket health expenditures and the proportion of “poor” couples with at least one child are two factors that contribute significantly to the rise in poverty. The results of this study reveal the existence of a clear correlation between the need for LTC and the risk of poverty in households across Europe. These results highlight the central relevance of LTC policies, which are often still treated as marginal and sectoral, for the future sustainability of integrated care strategies.

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“…In Poland, as well as in the whole region of Central and Eastern Europe, there is a need to intensify activities at various levels for family carers of persons dependent due to illness or age. In addition to medical and caring activities, there is certainly a need for greater involvement in the areas of social sciences, especially care, social pedagogy and social work, key to creating compassionate communities, ready to support dependent people at home and their carers (Krakowiak, 2020b). The creation and development of existing support structures for family carers is essential, as is the practical identification of opportunities for cooperation between different parties.…”

Section: Conclusion -Poland On the Way To Include Working Family Carers In The Integrated Support Systemmentioning

confidence: 99%

How to support working family carers? British initiatives as a practical means to reduce loneliness in everyday life of family caregivers in Poland

Janowicz¹,

Klimek²,

Krakowiak³

2022

Self Cite

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Among various publications regarding end-of-life care in Poland there is one piece of important research that shows a difficult situation for family caregivers in end-of-life care in Poland, who often lack recognition and support and face a lonely struggle, especially in home care settings (Janowicz, 2019a). The Polish Government published documents in support of family caregivers for the first time in 2019, recognizing respite care and allocating money to some of them. Poland has successfully implemented British standards of hospice and palliative care, making it the best in Central-Eastern Europe; the same could be done in supporting carers in family settings (Krakowiak, 2020a). We have already learnt and benefited from the experience of the British organisation Carers UK, who have been operating successfully for more than 50 years and working towards inclusion of formal and informal care (Klimek, 2020). But how can we move forward in helping those who face loneliness and feelings of helplessness as family carers? We can learn from those who have already developed tools and created strategies supporting family caregivers. Exploring the educational strategies of supporting organizations from the UK, will help to point towards possible solutions to this social and educational challenge in Poland, helping to reduce the loneliness of carers in the home care settings. Most families still feel isolated, while most of our local communities do not support those who care, often for many months and years. Social educators and social workers need to tackle the questions of loneliness and isolation that many family caregivers face. First steps have been made and first publications issued, but more robust strategies and practical solutions are needed. Newest facts and figures from Carers UK documents and Best Practice In Supporting Carers by Carer Positive Employer in Scotland (2020) will help to show existing strategies used for and by employers. Among many existing initiatives this one regarding combining care and work could be very important to recognise the needs of working carers, sharing their job with the duty of constant care at home. Action is urgently needed in Poland, where many people do a full-time job alongside caring at home. Recognition of family carers’ needs by their workplace, support from employers and flexibility in working hours is still a rare exception, and it should be changed. The Covid-19 pandemic has fully exposed the problems of carers of dependent people around the world and also in Poland, especially difficult for those who combine care with work.

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Gaps in end-of-life care and lack of support for family carers in Poland and Central Eastern Europe

Cited by 11 publications

References 24 publications

What does it mean to be the main caregiver to a terminally ill family member in Lithuania?: A qualitative study

What does it mean to be the main caregiver to a terminally ill family member in Lithuania?: A qualitative study

Long-term care needs and the risk of household poverty across Europe: A comparative secondary data study

How to support working family carers? British initiatives as a practical means to reduce loneliness in everyday life of family caregivers in Poland

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