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

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: 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

INTRODUCTION AND METHODS: We report two series of individuals with DDX3X variations, one (48 individuals) from physicians and one (44 individuals) from caregivers. RESULTS: These two series include several symptoms in common, with fairly similar distribution, which suggests that caregivers' data are close to physicians' data. For example, both series identified early childhood symptoms that were not previously described: feeding difficulties, mean walking age, and age at first words. DISCUSSION: Each of the two datasets provides complementary knowledge. We confirmed that symptoms are similar to those in the literature and provides more details on feeding difficulties. Caregivers considered that the symptom attention-deficit/hyperactivity disorder were most worrisome. Both series also reported sleep disturbance. Recently, anxiety has been reported in individuals with DDX3X variants. We strongly suggest that attention-deficit/hyperactivity disorder, anxiety, and sleep disorders need to be treated.

• Klíčová slova
• DDX3X, ADHD, caregivers, developmental milestones,
• MeSH
• DEAD-box RNA-helikasy MeSH
• hyperkinetická porucha * genetika   terapie   MeSH
• kojenec MeSH
• lidé MeSH
• osoby pečující o pacienty * MeSH
• předškolní dítě MeSH
• zpráva o sobě MeSH
• Check Tag
• kojenec MeSH
• lidé MeSH
• předškolní dítě MeSH
• Publikační typ
• časopisecké články MeSH
• Názvy látek
• DDX3X protein, human MeSH Prohlížeč
• DEAD-box RNA-helikasy 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

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

BACKGROUND: Informal caregivers are vital in caring for their family and friends at home who may have illnesses or disabilities. In particular, the demands for caregiving can be even more challenging for those with limited resources, support systems, and language barriers, such as immigrant informal caregivers. They face complex challenges in providing care for their relatives. These challenges can be related to sociocultural diversity, language barriers, and health care system navigation. Acknowledging the global context of the increasing number of immigrants is essential in designing inclusive mobile health apps. OBJECTIVE: This study aims to investigate the needs of immigrant informal caregivers in Sweden and discuss the application of the Persuasive System Design Model (PSDM) to develop an e-coaching prototype. By addressing the unique challenges faced by immigrant informal caregivers, this study will contribute to the development of more effective and inclusive mobile health apps. METHODS: The participants were considered immigrants and included in the study if they and their parents were born outside of Sweden. Through various channels, such as the National Association of Relatives, rehabilitation departments at municipalities, and immigrant groups, we recruited 13 immigrant informal caregivers. These immigrant informal caregivers were primarily women aged 18 to 40 years. Most participants belonged to the Middle Eastern region whereas some were from North Africa. However, all of them spoke Arabic. We used semistructured interviews to gather data from the participants in Arabic, which were translated into English. Data were analyzed using thematic analysis and discussed in relation to the extended PSDM. The needs of the caregivers were compared with the description of persuasive design principles, and a design principle was chosen based on the match. The PSDM was extended if the need description did not match any principles. Several brainstorming and prototyping sessions were conducted to design the mobile e-coaching app. RESULTS: Immigrant informal caregivers have various needs in their caregiving role. They reported a need for training on the illness and future caregiving needs, assistance with understanding the Swedish language and culture, and help with accessing internet-based information and services. They also required recognition and appreciation for their efforts, additional informal support, and easy access to health care services, which can be important for their mental health. The PSDM was adapted to the informal caregiving context by adding "facilitating conditions" and "verbal encouragement" as additional persuasive design principles. This study also presents the subsequent mobile e-coaching app for immigrant informal caregivers in Sweden. CONCLUSIONS: This study revealed important immigrant informal caregivers' needs based on which design suggestions for a mobile e-coaching app were presented. We also proposed an adapted PSDM, for the informal caregiving context. The adapted PSDM can be further used to design digital interventions for caregiving.

• Klíčová slova
• aging, app, caregiver, design, designing app, development, diversity, e-coaching, immigrant informal caregivers, inclusion, language barrier, mHealth, mental health, mobile health, mobile phone, persuasive system design, training, user needs, users,
• MeSH
• dospělí MeSH
• emigranti a imigranti * MeSH
• lidé MeSH
• mentoring * MeSH
• mladiství MeSH
• mladý dospělý MeSH
• mobilní aplikace * MeSH
• osoby pečující o pacienty MeSH
• přesvědčovací komunikace MeSH
• Check Tag
• dospělí MeSH
• lidé MeSH
• mladiství MeSH
• mladý dospělý MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

PURPOSE OF THE STUDY Anxiety may have negative repercussions on the surgery including poorer outcomes. On the other hand, the majority of patients reporting preoperative anxiety fear not receiving enough attention from a caregiver. In patients undergoing fast-track knee arthroplasty, we determined the relationship between patients' preoperative anxiety and the anxiety the patient's caregiver. We also analyzed the influence of selected psychosocial and demographic variables on the relationship between caregivers' and patients' anxiety. MATERIAL AND METHODS We conducted a prospective, descriptive study in which baseline assessments of patients scheduled to undergo fast-track total knee arthroplasty between 1st November 2014 and 30th April 2015 were compared with those of their caregivers. Patients were recruited from a large teaching hospital through the orthopedics joint replacement clinic. Information on sex, age, body mass index (BMI), educational status, employment status, marital status, and living status was recorded for all patients. Patients and their caregivers completed the Spielberger State-Trait Anxiety Inventory. Baseline trait anxiety was assessed with STAI scores in the initial interview, 2 weeks before hospitalization, and state anxiety was assessed the day before the surgery. The patients' caregivers were contacted during a scheduled postoperative clinic visit and asked to complete the STAI and to provide information on their age, degree of consanguinity with patient, and living status. RESULTS The mean age was 66.4 years for the 118 patients and 55.7 years for the 93 caregivers. In male caregivers, caregiver anxiety and patient anxiety were positively related but not statistically so, and in women was not significant. In male patients, a relationship between caregiver's anxiety and patient's anxiety was positive, although not statistically significant, and in women was neither present nor significant. DISCUSSION Given the widespread impacts of anxiety before knee arthroplasty, it is critical for surgeons to gain a better understanding of how to identify and reduce preoperative anxiety in operated patients. We found that male sex among caregivers was associated with more preoperative anxiety among patients than was female sex and that male patients more quickly accepted anxiety from their caregivers than did female patients. CONCLUSIONS Anxious male caregivers appear to impart their anxiety to male patients but not to female patients. The anxiety of unrelated caregivers is associated with low preoperative anxiety among patients. Preoperative interventions should focus on caregivers, especially male caregivers, and to related caregivers to help patients cope with anxiety before knee arthroplasty. Key words: knee arthroplasty. knee replacement. fast track, anxiety, caregiver, preoperative stress.

• MeSH
• lidé středního věku MeSH
• lidé MeSH
• nemocnice fakultní MeSH
• ortopedie * MeSH
• osoby pečující o pacienty psychologie   MeSH
• předoperační péče psychologie   MeSH
• prospektivní studie MeSH
• průzkumy a dotazníky MeSH
• senioři MeSH
• totální endoprotéza kolene psychologie   MeSH
• úzkost psychologie   MeSH
• Check Tag
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• srovnávací studie MeSH

OBJECTIVE: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. METHODS: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12-month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty-four patients completed all three phases of data collection. RESULTS: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non-significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185-0.510). CONCLUSIONS: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory.

• Klíčová slova
• advance care planning, cancer, communication, family, oncology, patient care planning, prognosis, psycho-oncology,
• MeSH
• kohortové studie MeSH
• lidé MeSH
• longitudinální studie MeSH
• nádory * terapie   MeSH
• osoby pečující o pacienty * MeSH
• prognóza MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem 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