BACKGROUND: In this paper, we analyse the economic burden of elder care in the Czech Republic by assessing how family members of senior citizens engage in caregiving. To do this, we examined the time and cost associated with caregiving as a function of age, gender, and income of the caregiver. METHODS: A questionnaire comprising 17 items was used to gather data from 155 informal caregivers whose seniors are affiliated with 200 registered home care agencies. Spearman rank correlation was adopted to analyse how caregivers' income, age and gender influences the costs accrued and time spent in caring for elders. The expenses are divided into direct and indirect. Publicly available sources are used to establish expenses on treatment and medication, which cannot be determined by the questionnaire survey. RESULTS: Results show that around-the-clock care is the most common. Spouses of care recipients make up the highest number of caregivers, and women represent the largest portion of this group. Additionally, the more the time spent caring for an elder, the higher the cost associated with such care. The total annual burden of informal caregivers is determined by the sum of annual average indirect costs, amounting to € 36,888, and annual direct costs, amounting to € 2775, resulting in a total of € 39,663 per year. CONCLUSION: Czech social policymakers should begin to consider better packages for caregivers in the form of incentives and other monetary benefits to improve living standards and care for ageing seniors.

• Klíčová slova
• Burden, Disease, Family caregivers, Home care, Seniors,
• MeSH
• lidé MeSH
• osobní újma zaviněná nemocí * MeSH
• osoby pečující o pacienty * MeSH
• průzkumy a dotazníky MeSH
• rodina MeSH
• senioři MeSH
• Check Tag
• lidé MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Česká republika epidemiologie   MeSH

BACKGROUND: Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation. METHODS: This was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis. RESULTS: In total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report. CONCLUSIONS: Our study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital.

• Klíčová slova
• Communication, Initial consultation, Parental feedback, Pediatric palliative care,
• MeSH
• dítě MeSH
• komunikace MeSH
• kvalitativní výzkum MeSH
• lidé MeSH
• osoby pečující o pacienty * MeSH
• paliativní péče * metody   MeSH
• rodiče psychologie   MeSH
• rodina psychologie   MeSH
• Check Tag
• dítě MeSH
• lidé MeSH
• Publikační typ
• časopisecké články MeSH

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

• Klíčová slova
• decision-making, dementia, family caregivers, nursing homes, older people,
• MeSH
• demence * diagnóza   terapie   MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• pečovatelské domovy MeSH
• předběžné plánování péče * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Kanada MeSH

OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.

• Klíčová slova
• Dementia, End-of-life care, Family caregiver, Nursing home, Patient engagement, Shared decision making,
• MeSH
• demence * terapie   MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• péče o umírající * MeSH
• pečovatelské domovy MeSH
• rodina MeSH
• rozvojové země MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

Background: The population aging together with an increased incidence of Alzheimer's disease (AD) should also be accompanied by a growing interest in healthcare research. Therefore, this study examines the nature of the caregiver's work, its mental and physical demands, experience and questions, and the relationship between the person with AD, the caregiver, and family members. Methods: As social media has become the place where people share family situations, a Facebook private discussion group of caregivers was chosen as the analytical data source. The study documented the daily-life situations of one-hundred dyads based on 2110 posts published during a six-month or longer period. A content analysis classified communication into 35 categories of basic, instrumental, and extended activities of daily livings (ADLs) and newly designed caregiver's daily issues (CDIs). Results: The frequently discussed topics were related to exhaustion and feelings of "giving up" by caregivers and interpersonal communication and help from family members. The highest support was found for the topics of aging and dying and family events. Conclusion: The communications of caregivers were diverse and rather associated with co-occupational ADLs and CDIs than basic or instrumental ADLs. The support of the group was mainly provided in coping with fundamental life changes.

• Klíčová slova
• Alzheimer’s disease, Facebook, caregiver, online support group, social media,
• MeSH
• adaptace psychologická MeSH
• Alzheimerova nemoc * ošetřování   MeSH
• diterpeny MeSH
• lidé MeSH
• osoby pečující o pacienty * MeSH
• rodina MeSH
• sociální média * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Názvy látek
• communic acid MeSH Prohlížeč
• diterpeny MeSH

BACKGROUND: Only a few studies have been done focusing on the quality of life (QoL) of patients with multiple sclerosis (MS) as well as their family members. The aim of our research was to determine the factors that influence the QoL of MS patients in advanced stage of disease and their caregivers. METHODS: The sample of the cross-sectional study included 153 patients with MS and 74 caregivers. QoL was measured using the PNDQoL questionnaire (Progressive Neurological Diseases Quality of Life), and the severity of illness was assessed through the following scales: EDSS (Expanded Disability Status scale), PPS (Palliative Performance Scale), and ADL (Activity Daily Living). RESULTS: The following predictors of the global QoL of the MS patients were identified - age, EDSS, symptom burden, daily care, emotional functioning, and spiritual_nonreligion functioning (R2 = 0.569; F = 32.900; p < 0.001). The following predictors of the global QoL of caregivers were identified - age, emotional functioning, spiritual_nonreligion functioning, patient's QoL, and feeling of care (R2 = 0.431; F = 18.690; p < 0.001). CONCLUSION: Appropriate intervention should be directed particularly at older patients and caregivers who have faced the disease for longer time and at patients without any partner. Supporting the emotional and social well-being and mitigating the burden caused by symptoms of the patients as well as caregivers can improve the QoL of both groups.

• Klíčová slova
• Caregivers, Emotional, Multiple sclerosis, Predictors, Quality of life, Social,
• MeSH
• dospělí MeSH
• kvalita života psychologie   MeSH
• lidé středního věku MeSH
• lidé MeSH
• osoby pečující o pacienty psychologie   MeSH
• průřezové studie MeSH
• průzkumy a dotazníky MeSH
• rodina psychologie   MeSH
• roztroušená skleróza psychologie   MeSH
• senioři MeSH
• Check Tag
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

BACKGROUND: Present demographic trends show a considerable rise in elderly populations with aging disorders, such as dementia. The current article focused on the exploitation of e-learning as an informal support for caregivers of people with dementia and considered its benefits and limitations to provide proper and relevant care for this target group of people as well as maintain the quality of life of their caregivers. METHODS: The methodology of this study is based on a literature review of accessible peer-review articles from three recognized databases: Web of Science, Scopus, and PubMed. The findings of the selected studies were compared and evaluated. RESULTS: The findings showed that e-learning educational programs/courses helped caregivers feel more confident about dementia care, reduced their perceived stress and enhanced their feelings of empathy, understanding and concern. CONCLUSIONS: The findings of this study reveal that the exploitation of e-learning as a support tool, especially for informal caregivers, in the management of dementia may be a promising method, but its implementation requires professional training of informal caregivers in the use of this technology. More evidence-based studies are needed on this topic.

• Klíčová slova
• Benefits, Caregivers, Dementia, E-learning, Limitations,
• MeSH
• demence terapie   MeSH
• lidé MeSH
• osoby pečující o pacienty výchova   psychologie   MeSH
• počítačem řízená výuka * MeSH
• randomizované kontrolované studie jako téma MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• systematický přehled MeSH

INTRODUCTION: Reports on the quality of life (QOL) of family caregivers of schizophrenia patients are uncommon. Relations of different degree of kinship to caregivers' QOL are unexplored, but may be relevant. The purpose of this study was to assess the subjective QOL of caregivers of stable outpatients with diagnosis of schizophrenia compared with controls, and to assess factors associated with QOL in this population. METHODS: Responses of 138 schizophrenia outpatient' family caregivers to the Quality of Life, Enjoyment and Satisfaction Questionnaire (QLESQSF) were compared with those of a sex- and age-matched control group. Patients were assessed with the Positive and Negative Symptom Scale (PANSS) and the Global Assessment of Functioning (GAF) and data were collected for kinship relationship and hospitalization. RESULTS: Group of caregivers had significantly lower QOL compared with controls (t=11.347; df=271; p=0.0001). Caregivers' QOL correlated significantly with their age and differed according to the degree of kinship and marriage status. ANCOVA, with age as covariate, performed to asses the differences in QOL according to kinship, showed that parents and own children had significantly lower QOL than patients' siblings who were also caregivers. CONCLUSION: QOL of the schizophrenia patients' caregivers is lower in comparisons to controls. It depends on the degree of kinship and caregivers' age. Parents and own children have lower QOL than siblings. Psycho-educational intervention programmes should target specific needs of the family as a whole, depending also on their age and kinship relationship.

• MeSH
• dospělí MeSH
• kvalita života * MeSH
• lidé středního věku MeSH
• lidé MeSH
• osoby pečující o pacienty psychologie   MeSH
• rodina psychologie   MeSH
• schizofrenie * MeSH
• senioři MeSH
• Check Tag
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH

Families caring for children with autism spectrum disorder (ASD) have reported poorer family functioning. Social support might strengthen family functioning, but limited research to date has focused on this association in China. This study conducted a cross-sectional survey of Chinese families that have children with ASD to examine the relationship between social support and family functioning. Caregivers of children with ASD from Sichuan province in China (N = 167) were surveyed concerning their perceived social support and family functioning. The Social Support Rating Scale was used to investigate caregivers' perceived social support from three dimensions: subjective support, objective support, and the utilization of support. A Chinese version of the Family Adaptability and Cohesion Scale was used to investigate their perceptions of family cohesion and adaptability. The Pearson correlation coefficient and stepwise multiple regression were used for analyses. The results suggested that social support was positively related to family cohesion and adaptability. Of the three sub-domains of social support, both subjective support and the utilization of support were positively associated with family cohesion and adaptability. The study's findings evidenced the importance of different types of social support and could be used to develop a targeted support service for families that have children with ASD to improve their family functioning and sustain the family unit.

• Klíčová slova
• autism spectrum disorder, caregivers, families, family functioning, social support,
• MeSH
• dítě MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• poruchy autistického spektra * MeSH
• průřezové studie MeSH
• rodina MeSH
• sociální opora MeSH
• Check Tag
• dítě MeSH
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Čína MeSH

BACKGROUND: It is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers. METHODS: The sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. RESULTS: Before intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0 .001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains. CONCLUSION: The provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided.

• Klíčová slova
• Palliative care, Quality of life, Subjective assessment, Symptoms burden,
• MeSH
• dospělí MeSH
• kvalita života psychologie   MeSH
• lidé středního věku MeSH
• lidé MeSH
• nemoci nervového systému komplikace   ošetřování   MeSH
• neurologické ošetřovatelství normy   statistika a číselné údaje   MeSH
• osoby pečující o pacienty psychologie   MeSH
• paliativní péče metody   psychologie   normy   MeSH
• průzkumy a dotazníky MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• spokojenost pacientů * MeSH
• Check Tag
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH