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EN
Cancer is a major problem that affects today's society. Besides patients suffering from this disease, cancer has also a huge impact on the quality of life of the family. This study aimed to investigate the latest bibliography on the effect of the burden of patient care with cancer on family caregivers. Family caregivers face physical health problems such as physical pain, fatigue, sleep disturbances. Moreover, several psychological effects are shown, in which various disorders such as depression are included. Psychological disorders, also, include adjustment disorder, panic disorder, anxiety, and emotional reactions such as anger, frustration, and fear. In the financial sector, caregivers face several problems due to the coverage of medical needs which are reinforced by reducing or stopping their work because of the care burden. At the same time, they are confronted with social impacts in which loneliness and isolation are attributable to the limitation of their social activities. As far as the age group of the patient is concerned, the effects of caring for young patients are more psychological than physical in opposite to the older people. The burden experienced by the family of the cancer patient exhausts family and it becomes necessary to identify problems and assess their needs. Health professionals should strength caregivers with actions such as psychological support, training, and participation in social and supportive programs in order to improve their personal health and quality of life.
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Background. The effort involved in caring for a patient suffering from cystic fibrosis lies with its parents/caregiver, becoming the cause of excessive burden. In such a situation, social support is an important strategy for coping with chronic illnesses. Objectives. The aim of the study was to assess the level of burden and social support for parents of children with CF and to establish a relationship between them. Material and methods. The study involved 88 parents of patients with cystic fibrosis. The study utilized the standardized Caregiver Burden Scale (CB ) and the Berlin Social Support Scale (BSSS ). Results. The study group experienced an average burden level, which is dependent on the level of education. The highest level of burden was found in two subscales: disappointment and general effort, and the lowest was in the emotional involvement subscale. The level of support in the studied group was high. The largest was observed in the subscale perceived support and received support, and the lowest in the subscale seeking support. Analysis of the regression of the dependent variable of the caregiver’s level of burden showed that the level of burden determines the need for support. It has been observed that as the level of the caregiver’s burden increases, the need for support also increases. In turn, the smaller the caregiver’s burden, the lower the need for support currently received. Conclusions. The caregiver burden on the parent of a children suffering from CF and the received social support are important factors influencing each other in the care of a chronically ill child. This means that the more support received, the lower the sense of burden the caregiver experiences
EN
Background. Schizophrenia is one of the commonly occurring disorders, often causing a high degree of disability to the patients, as well as being stressful to the caregivers. Objectives. To find the efficacy of psycho-education on knowledge regarding schizophrenia among caregivers and reducing their level of burden. Material and methods. A randomized controlled trial was used to assess the effectiveness of psycho-education among caregivers of patients with schizophrenia. This study was conducted at a selected state government mental hospital in Karnataka, India. 350 caregivers were randomly assigned to study (n = 175) and control groups (n = 175). Both the group subjects were initially assessed for knowledge and burden. The study group caregivers participated in one or two psycho-education sessions with routine nursing care. Control group subjects received routine care in the hospital. Post-intervention assessment was done at the end of one-month and three-month intervals. Results. At pre-test, the study group caregivers’ mean knowledge scores were mean = 22.93, SD = 17.03, which was improved to mean = 85.90, SD = 9.51 at the one-month follow-up and mean = 97.94, SD = 4.41 at the three-month follow-up. This improvement was statistically significant at a 0.01 level when compared to control group caregivers. The study group caregivers’ mean burden scores that were initially recorded at pre-test mean = 82.37, SD = 10.40 reduced to mean = 49.13, SD = 8.28 at the one-month follow-up and mean = 40.86, SD = 6.27 at the three-month follow-up. This improvement was statistically significant at a 0.01 level when compared to control group caregivers. Conclusions. The study group caregivers showed an improvement in knowledge gain and a reduction in care burden. The present study findings provided evidence for the role of psycho-education intervention in reducing care burden among caregivers of patients with schizophrenia and was also found effective in caring for their relatives with appropriate knowledge
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tom 5
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nr 7
47-53
XX
Parkinson’s disease (PD) is a neurodegenerative disease. Due to a constantly growing rate of incidence and the lowering age of PD patients it is becoming a more serious social problem. The aim of this study is to assess the quality of life amongst care givers for people suffering from Parkinson's disease. The work includes research on the influence of physical rehabilitation of PD patients on the quality of life of their care givers. The research covered care givers (n=50) of PD patients diagnosed with third stage PD according to the Hoehn and Yahr classification. The diagnostics survey with a questionnaire addressed to care givers looking after PD patients was used. The questionnaire was created by the authors of this paper. The survey consisted of two parts, in which the first was to obtain basic information on the present status of the care giver, while the other was to verify life satisfaction level, using Jurczynski's Scale of Life Satisfaction. Statistical analysis showed significant differences in all analyzed statements between groups. Better effects were observed in the group participating in rehabilitation. Care for people suffering from PD affects the quality of life of caregivers. Participation in the process of rehabilitation of patients with PD improves the quality of life of caregivers.
EN
During the discussion, the panellists analyzed several main issues: I. The role of the family and public institutions in long-term care. II. System solutions in the policy of supporting carers of dependent people. III. The method of financing care for elderly dependent people (including the role of social insurance). IV. The ability to provide care to dependent people and public expenditure on it, forms of support for carers. V. The role of the market in providing care and state activities. Outsourcing of carers of dependent people. Relationship between bottom-up actions and top-down actions taken by central authorities. VI. Reconciling the role of a caregiver with work on the free market.
PL
Paneliści podczas dyskusji analizowali kilka głównych zagadnień: I. Rolę rodziny i instytucji publicznych w opiece długoterminowej. II. Rozwiązania systemowe w polityce wsparcia opiekunów osób niesamodzielnych. III. Sposób finansowania opieki nad osobami niesamodzielnymi w wieku senioralnym (w tym rola ubezpieczeń społecznych). IV. Zdolność do zapewniania opieki osobom niesamodzielnym i wydatki publiczne na nią, formy wsparcia opiekunów. V. Rolę rynku w zapewnianiu opieki i działania państwa. Outsourcing opiekunów osób niesamodzielnych. Relację między działaniami oddolnymi a działaniami odgórnymi podejmowanymi przez władze centralne. VI. Godzenie roli opiekuna z pracą na wolnym rynku.
EN
Background and objective: Stroke survivors often rely on caregivers to perform their Home Exercise Programme (HEP); however, little is known about enablers and barriers to HEP adherence from caregivers’ perspective. This study aims to explore the caregivers’ perspectives on the enablers and barriers to HEP adherence among stroke survivors. Methods: Fourteen caregivers of stroke survivors receiving physiotherapy at a Nigerian university teaching hospital were interviewed for the purpose of a qualitative study. An in-depth interview was used to explore respondents’ perspectives on enablers and barriers to HEP adherence. The gathered data was transcribed verbatim and analyzed. Results: The caregivers were mostly women (8/14) and close family members of the stroke survivors. In their opinion the main HEP adherence enablers were motivation and expectation, positive outcome and experience, availability of social support, timing, and religious beliefs. Overall health and wellness, caregiver’s schedule, negative emotions, and fear of falling were the dominant perceived barriers to HEP adherence. Conclusion: Home exercise programme adherence by stroke survivors is determined by a number of factors, including caregiver-related ones. It is necessary to pay close attention to all undercurrents of HEP adherence related to stroke survivors and their caregivers.
EN
The subject literature identifies many predictors of a feeling of burden, yet it often ignores aspects of the psychological and social functioning of caregivers, i.e., resources for efficiently coping with a difficult situation. This study aimed to verify the predictors of a feeling of burden experienced by the caregivers of individuals suffering from Parkinson’s disease, taking into account the cognitive functioning of the patients as well as the psychological resources and social competences of the caregivers themselves. A cross-sectional study was conducted on 20 individuals suffering from Parkinson’s disease and their caregivers. It included a neuropsychiatric examination of the patients, with a special focus on executive functions, as well as an assessment of the psychological and social resources of their caregivers using standard psychometric methods. Self esteem was measured using the SES scale and sense of coherence was measured using SOC-29. The statistical analysis included correlation analysis and multiple hierarchical regression. The duration of the disease as well as cognitive impairments, especially executive dysfunction, are significant predictors of a feeling of burden. A high sense of coherence is associated with a positive assessment of one’s own resources in the context of coping with a difficult situation. The feeling of burden experienced by caregivers of individuals suffering from neurodegenerative disorders is a complex phenomenon, composed of many factors. The predictors discusse in this study point to various individual differences in the psychological resources possessed by caregivers.
EN
Background. Providing care to patients with low function agility in the home environment becomes a burden and leads to the worsening of the informal caregiver’s quality of life. Objectives. Aim of the research was to assess the quality of life of informal caregivers in the context of their burden linked to the care provided to chronically ill patients with low function agility in the home environment. Material and methods. Research was conducted in five public healthcare facilities, from September 2016 until February 2017, and included 138 informal caregivers. The WHOQoL-AGE scale was used to assess caregivers’ quality of life, and the COPE Index was employed to assessed caregivers’ burden. Results. According to WHOQoL-AGE, the average value of caregivers’ quality of life was 70.14 points. Caregivers’ burden according to the COPE Index Negative Impact of Care subscale was: M = 11.80; Positive Value of Care subscale: M = 13.71; and in Quality of Support subscale: M = 12.46. Statistical importance was at p ≤ 0.01 for WHOQoL-AGE scale, and the burden according to the COPE Index. Conclusions. Informal caregivers’ quality of life according to the WHOQoL-AGE scale corresponds significantly with caregivers’ burden according to the COPE-Index, in all of the analysed domains. Along with the increase of the negative influence of the care, general quality of life with all its subscales, as well as satisfaction, decreases. Caregivers’ quality of life increases along with the increase of the satisfaction connected to the provided care, and with receiving support from informal and formal healthcare
10
75%
EN
Nursing benefit is one of the forms of help for caregivers of people with disabilities. Thus, the principle of state aid to people who are not able to cope with the difficulties encountered is fulfilled. Government assistance is a constitutional obligation of the state. Another equally important task of social policy is the equal treatment of all citizens. Granting the nursing benefit is contrary to the principle of equality. The provisions of the Law on family benefits exclude from the circle of eligible adult persons who became disiabled after the age of 18. The law thus created violates the principle of equality of all citizens. This is confirmed by the judgment of the Constitutional Tribunal, as well as many other court decisions granting the right to the nursing benefit to theoretically unauthorized persons. The article is a synthetic presentation of what the nursing benefit is, why the age criterion of the emergence of disability has been introduced, and it also shows the legal gaps used by people to obtain the right to the above-mentioned benefit. The issues presented in the article are only a fragment of an extensive topic, as since 2013 discussions have been taking place which question the existing benefit, and the introduced amendments have still not brought the expected results.
PL
Świadczenie pielęgnacyjne jest jedną z form pomocy opiekunom osób z niepełnosprawnością. Tym samym wypełniana jest zasada pomocy państwa osobom, które nie są w stanie samodzielnie podołać napotkanym trudnością. Pomoc rządowa jest konstytucyjnym obowiązkiem państwa. Innym równie ważnym zadaniem polityki społecznej jest równe traktowanie wszystkich obywateli. Przyznawanie świadczenia pielęgnacyjnego stoi w sprzeczności z zasadą równości. Zapisy ustawy o świadczeniach rodzinnych wyłączają bowiem z kręgu osób uprawionych dorosłe osoby, u których niepełnosprawność powstała po ukończeniu 18. roku życia. Tak stworzona ustawa narusza zasadę równości wszystkich obywateli. Potwierdza to wyrok Trybunału Konstytucyjnego, a także wiele innych orzeczeń sądowych przyznających prawo do świadczenia pielęgnacyjnego osobom teoretycznie nieuprawionym. Artykuł jest syntetycznym przedstawieniem, czym jest świadczenie pielęgnacyjne, dlaczego zostało wprowadzone kryterium wiekowe powstania niepełnosprawności, a także ukazuje luki prawne, z których korzystają osoby, aby uzyskać prawo do w/w świadczenia. Przedstawione w artykule kwestie są jedynie wycinkiem obszernego tematu, od 2013 r. toczą się bowiem dyskusje podające w wątpliwość obowiązujące świadczenie, a wprowadzane nowelizacje nadal nie przyniosły oczekiwanych efektów.
EN
The author considers whether the caregivers of dependent persons can obtain social accident insurance. In the first place, he defines who should be treated as a caregiver of a dependent person for the purposes of the study. In the following part, he considers the legal structure of paying a contribution towards the pension and disability pension insurance for the caregivers of dependent persons. Applying the language and system interpretation, he concludes that it is a legal construction that is different from the classic insurance entitlement. In the context of caregivers, it has significant legal consequences because it deprives them of the protection of accident insurance. The legal structure applied by the legislator means that they are not subject to this insurance even though care constitutes an increased risk of an accident. Finally, the author postulates that the health damages of caregivers caused by accidents occuring as part of the caring should be protected as part of the social compensation system.
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2019
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nr 4(60)
123-142
EN
The article provides an overview of the female emigration from Poland to home care sector in selected EU member states. At the turn of the XX and XXI centuries, this sector became an important place of employment for hundreds of thousands of immigrants. Poland is a country emigration from which remains high. The author presents the scale and patterns of migration of Polish women to the elderly home care sector, mainly in Germany, Italy, the United Kingdom, Belgium and Scandinavian countries. The results of quantitative and qualitative research, as well as statistical data, are used. At the same time, an original assessment of the consequences of care migration for migrants and their families is carried out.
EN
The pandemic has had a significant impact on the social reality, the current characteristics of which include: unpredictability, permanent change, and difficulties in defining actions to deal with the consequences of the existing threats, both at the macro and micro level. This situation particularly affects groups that need social support. One of them includes home caregivers of people suffering from dementia. The aim of the article is to present the situation of home caregivers who take care of their family members suffering from dementia. The description is based on data obtained in random interviews carried out in 2021 on a sample selected in a purposeful manner. The respondents recognized that the pandemic had a significant impact on the way they function, in particular: the way they provide care (a feeling of greater burden due to limited institutional support and access to medical care), the need to function in virtual reality, an increase in the sense of exclusion, and the deterioration of mood resulting from both from personal experience and observation of the condition of the person under their care.
PL
Wybuch pandemii w znaczący sposób wpłynął na rzeczywistość społeczną, której obecna charakterystyka odnosi się przede wszystkim do nieprzewidywalności, permanentnej zmiany i trudności w określeniu działań pozwalających poradzić sobie z konsekwencjami występujących zagrożeń, zarówno na poziomie makro, jak i mikro. Sytuacja ta w sposób szczególny dotyka grup, które jeszcze przed wybuchem pandemii potrzebowały wsparcia. Jedną z nich stanowią opiekunowie domowi osób cierpiących na demencję. Celem artykułu jest przedstawienie sytuacji opiekunów domowych, związanej ze świadczeniem opieki na rzecz ich bliskich chorujących na demencję w kontekście pandemii. Opis dokonywany jest na podstawie danych pozyskanych w wywiadach swobodnych pogłębionych, zrealizowanych w 2021 roku na próbie dobranej w sposób celowy. Badani uznali, że pandemia w zdecydowany sposób wpłynęła na ich funkcjonowanie, w szczególności na sprawowanie opieki (poczucie większego obciążenia ze względu na ograniczenie wsparcia instytucjonalnego i dostępności do podmiotów medycznych), konieczność odnalezienia się w rzeczywistości wirtualnej, wzrost poczucia wykluczenia oraz pogorszenie nastroju wynikające zarówno z doświadczeń osobistych, jak i obserwacji stanu osoby pozostającej pod ich opieką.
14
Content available remote Frailty syndrome in community care – tips for patients and caregivers
75%
EN
Zespół słabości (ZS) jest dynamicznym stanem charakteryzującym się zmniejszeniem fizjologicznych rezerw organizmu, osłabieniem odporności na czynniki stresogenne oraz zaburzeniami funkcjonowania układów ciała. W ZS dochodzi do zmniejszenia masy ciała i siły mięśniowej, problemów z poruszaniem się, utrzymaniem równowagi oraz do zmniejszenia aktywności fizycznej. Wyróżniamy trzy stadia zespołu słabości: wczesny ZS (pre- -frail), zespół słabości (frail) oraz powikłania zespołu słabości. Głównym czynnikiem ryzyka wystąpienia ZS jest wiek podeszły, ale znaczenie mają również czynniki genetyczne, środowiskowe, styl życia oraz choroby współistniejące. Do rozpoznania ZS stosuje się m.in. skalę Frieda, Rockwooda oraz GF I (Groningen Frailty Index). Podstawą profilaktyki ZS jest regularna aktywność fizyczna, łącząca ćwiczenia aerobowe, siłowe i rozciągające. Podkreśla się także rolę diety zawierającą produkty bogate w białko, witaminy, zwłaszcza witaminę D oraz leucynę i kwasy omega-3. Poza tym należy zwrócić uwagę na suplementację witaminy D, leczenie chorób współistniejących oraz wykonywanie szczepień ochronnych zapobiegających chorobom zakaźnym. Ogromną rolę w profilaktyce i zapobieganiu powikłaniom tej choroby odgrywa rodzina i opiekunowie osób w wieku podeszłym, którzy powinni zwrócić uwagę na pierwsze jej symptomy oraz podjąć działania minimalizujące ryzyko wystąpienia ZS oraz spowalniające przebieg choroby. null
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tom 1/45
171-184
EN
Adjusting to an Alzheimer’s disease diagnosis is a complex process. Caregivers tend to experience feelings of loneliness and isolation, which in turn may have adverse effects on their well-being. Although the detrimental effects of caregiving on psychological and physical health are well documented, more research is needed to give a comprehensive portrait of the caregiving experience, especially in the areas of aloneness and social isolation. Loneliness remains a neglected aspect of the caregiving experience. Results from this study offer important insights into the caregiving experience for psychologists and other healthcare professionals.
PL
Przystosowanie się do choroby Alzheimera jest złożonym procesem. Opiekunowie doświadczają samotności i izolacji, co może niekorzystnie wpływać na ich samopoczucie. Mimo iż negatywny wpływ, jaki może wywrzeć sprawowanie opieki na zdrowie psychiczne i fizyczne, został potwierdzony w wielu badaniach, nie udało się jeszcze uzyskać kompleksowego portretu opiekuna i jego doświadczeń, zwłaszcza jeśli chodzi o doświadczenie samotności i izolacji społecznej. Samotność pozostaje zaniedbanym aspektem doświadczenia opiekuńczego. Wyniki tego badania oferują ważne informacje na temat doświadczenia w opiece zarówno dla psychologów, jak i innych osób zaangażowanych w pomoc osobom starszym.
EN
Introduction: A lot of research has been done on reactions of caregivers of children hospitalized for a long time and suffering from chronic diseases. There are not so much articles about the impact of short term hospitalization on family. Parent’s psychological well-being, level of stress, social support can affect children while even short hospitalization. Material: The examined group consisted of 64 caregivers of children hospitalized in Szpital Dziecięcy Polanki in Gdansk. Caregivers stayed with child during hospitalization and agreed to take part in the research. Children were average hospitalized for 7 days. Method: To gather data we used demographic and clinical survey. Caregivers were asked to estimate their level of stress. To measure way of coping with stress CISS was used, GSES to measure the level of control, CECS (showing or hiding emotions), and LOT-R (optimism). Results: There is a correlation between the caregiver’s level of stress and his/hers subjective estimation of children medical condition. There is correlation between the caregiver’s level of stress and seeking for social companionship, avoidance, and ways of coping focused on emotions. There was a correlation between level of stress and suppressing depression, and self-efficacy. Conclusions: 1) Caregiver’s high self-efficacy can decrease the level of stress – explaining to parents what they can do in their situation is very important. 2) Parents of younger children, suppressing their emotions, and very stressed should be given additional psychological help (psychoterapeutic and counseling).
PL
Wstęp: Wiele doniesień dotyczy reakcji rodziców i opiekunów w sytuacji przewlekłej hospitalizacji związanej z ciężką chorobą dziecka. Stosunkowo mniej badań pokazuje wpływ krótkotrwałej hospitalizacji na rodzinę. Kondycja psychiczna, poziom stresu rodzica, ilość wzajemnego wsparcia może przekładać się na stan dziecka także w tej sytuacji. Materiał: W badaniu udział wzięło 65 opiekunów dzieci hospitalizowanych w Szpitalu Dziecięcym Polanki w Gdańsku. Kryteriami włączenia było przebywanie z dzieckiem i wyrażenie zgody na badanie. Średni czas hospitalizacji dziecka w badanej grupie wyniósł około 7 dni. Metoda: W badaniu wykorzystano ankiety w celu zebrania danych demograficznych i klinicznych oraz określenia nasilenia subiektywnie odczuwanego przez rodzica stresu. Wykorzystano kwestionariusz CISS (do pomiaru stylu radzenia sobie ze stresem), GSES (pomiar poczucia kontroli), CECS (pomiar stopnia ujawniania lub tłumienia emocji) oraz LOT-R (pomiar optymizmu). Wyniki: Natężenie stresu odczuwanego przez rodzica hospitalizowanego dziecka koreluje z wiekiem dziecka oraz subiektywną oceną stanu dziecka dokonywaną przez rodzica. Zaobserwowano ujemną korelację pomiędzy odczuwanym przez rodzica natężeniem stresu a poszukiwaniem kontaktów towarzyskich, unikaniem oraz dodatnią współzależność między poziomem stresu a stylem skoncentrowanym na emocjach. Wystąpiło również nieznaczne powiązanie między poziomem stresu a tłumieniem depresji oraz poczuciem własnej skuteczności. Wnioski: 1) Poczucie własnej skuteczności u opiekunów i rodziców hospitalizowanych dzieci może zmniejszać odczuwany stres – wskazywanie obszarów pozostających pod kontrolą rodziców (tego, co rodzic może robić w sytuacji choroby dziecka) może zwiększać poczucie skuteczności. 2) Rodzice młodszych dzieci tłumiący emocje smutku, przeżywający silny stres mogliby zostać objęci dodatkową opieką psychologiczną (terapeutyczne wsparcie, poradnictwo) w celu zmniejszenia poziomu przeżywanego stresu.
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