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The aim of this paper is to understand the current situation of the care burden of patients with mental illness in remission and the factors affecting it in order to provide a scientific basis for targeted interventions. This paper reviews the concept of telemedicine, the application of telemedicine in home hospice care, and the remaining problems and improvement strategies of telemedicine in home hospice care, with the aim of providing a reference for the application of telemedicine in home hospice care in China. The Zarit Burden Scale, Family Care Scale, and Social Functioning Scale were used to conduct one-to-one interviews with 201 schizophrenic patients in remission and their primary caregivers in Hubei Province. Among them, 66, 72, and 25 cases (32.8%, 35.9%, and 12.4%) had mild, moderate, and severe burdens, respectively. Caregivers' family care and patients' social functioning were generally poor. The results of multiple linear regression analysis showed that caregiver age, caregiver education, caregiver family care, patient medical costs, and patient social functioning were factors influencing the burden of care for patients with schizophrenia in remission (P < 0.05). The government, mental health centers, and families should understand the level of caregiving burden of patients with schizophrenia in remission and the factors influencing it and provide targeted measures to reduce the caregiving burden. [ABSTRACT FROM AUTHOR]

Health systems rely on the unpaid work of family caregivers. Nevertheless, demographic changes suggest a shortage of caregivers in the near future, which can constrain the long‐term care policy in many countries. In order to find ways to support family caregivers, a primary effort would be to estimate how much their work is worth. This paper estimates the economic value of long‐term family caregivers and how these costs would be shared by the health system, the social insurances and the cared‐for person in the absence of informal caregivers. We use data of 717 family caregivers of persons with spinal cord injury (SCI) in Switzerland. We implemented the proxy‐good method and estimated the market value of their work if performed by professional caregivers. Our results show that family caregivers in the sample spent an average of 27 hr per week caring for a relative for almost 12 years. This work, if undertaken by professional home care, has a market value of CHF 62,732 (EUR 56,455) per year. In the absence of family caregivers, these costs should be financed by the health insurances (47%), by the cared‐for person (24%) and by the social insurances (29%). It is in the best interest of the cared‐for person and of the healthcare and social systems to keep a sustained supply of family caregivers. One option is finding ways to recognise and compensate them for their work and make it less cumbersome. [ABSTRACT FROM AUTHOR]

Informal caregiving for a person living with glioma can be both rewarding and multidimensionally challenging, given the potential for debilitating symptoms, cognitive impairment or personality changes, as early as diagnosis. There is growing evidence that, due to the demands of care, experiences and feelings of loneliness and isolation among informal caregivers are widespread, and opportunities for quality or meaningful social connectedness are lacking. While considerable research has quantified the causes and effects of loneliness and isolation in informal care contexts, the lived experience of loneliness has received relatively little attention. The aim of this study was to better understand the everyday experiences of a group of home‐based informal caregivers of people living with glioma in Queensland, Australia. Drawing on in‐depth interviews with 32 informal caregivers, purposively sampled, and recruited through a tertiary hospital, in this paper, we explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness. Using the framework approach to thematic analysis, we derived four themes: (a) the 'need' to be near the care recipient, and the implications for caregiver mobility; (b) the strong sense of responsibility for care, and the virtues of 'good' caring; (c) experiences of loneliness in the company of others and (d) postponement of social connection and minimising the self. The findings, we argue, are reflective of broader social and moral norms and expectations within experiences of home‐based informal care. [ABSTRACT FROM AUTHOR]

The Internet of Things (IoT) has enabled the invention of smart health monitoring systems. These health monitoring systems can track a person's mental and physical wellness. Stress, anxiety, and hypertension are key causes of many physical and mental disorders. Age-related problems such as stress, anxiety, and hypertension necessitate specific attention in this setting. Stress, anxiety, and blood pressure monitoring can prevent long-term damage by detecting problems early. This will increase the quality of life and reduce caregiver stress and healthcare costs. Determine fresh technology solutions for real-time stress, anxiety, and blood pressure monitoring using discreet wearable sensors and machine learning approaches. This study created an automated artefact detection method for BP and PPG signals. It was proposed to automatically remove outlier points generated by movement artefacts from the blood pressure signal. Next, eleven features taken from the oscillometric waveform envelope were utilised to analyse the relationship between diastolic blood pressure (SBP) and systolic blood pressure (DBP). This paper validates a proposed computational method for estimating blood pressure. The proposed architecture leverages sophisticated regression to predict systolic and diastolic blood pressure values from PPG signal characteristics. [ABSTRACT FROM AUTHOR]

Introduction. Parkinson's disease (PD) is the second most common neurological disorder. Patients with PD were affected by the COVID-19 pandemic in many different ways. This study's principal purpose is to assess PD patients' vulnerability to COVID-19 and its consequences. Method. This systematic review was performed based on Preferred Reporting Items for Systematic Reviews and Meta-Analyzes (PRISMA) guidelines. A thorough search was conducted in the Medline (through PubMed) and Scopus databases from inception to January 30, 2022. The Joanna Briggs Institute (JBI) critical appraisal checklist was used to evaluate the studies. Results. Most of the studies (38%) had been conducted in Italy. Of the total number of studies, 17 (58%) were cross-sectional, seven (22%) were cohort, four (12%) were quasiexperimental, two (6%) were case-control, and one (3%) was a qualitative study. The PD duration in patients ranged from 3.26 to 13.40 years (IQR1: 5.7 yrs., median: 3.688 yrs., and IQR3: 8.815 yrs.). Meanwhile, the sample size ranged from 12 to 30872 participants (IQR1: 46, median: 96, and IQR3: 211). Despite worsening PD symptoms in the targeted population (persons with COVID-19 and Parkinson's disease), some studies found PD to be a risk factor for more severe COVID-19 disease. There are many adverse effects during the pandemic period in PD patients such as abnormalities of motor, nonmotor functioning, clinical outcomes, activities of daily living, and other outcomes. Conclusion. This study confirmed the negative effect of the COVID-19 pandemic on health-related quality of life and its determinants in patients with PD and their caregivers. Thus, due to the worsening symptoms of PD patients in the current pandemic, these people should be given more care and supervision to minimize their coronavirus exposure. [ABSTRACT FROM AUTHOR]

The economic burden of brucellosis care on patients can lead to significant financial strain, despite partial coverage by medical insurance. However, there is limited research on the out‐of‐pocket costs faced by brucellosis patients. Therefore, our study aimed to investigate the costs and out‐of‐pocket expenses of brucellosis care, specifically examining the varying socioeconomic status of patients in Xinjiang, China. We collected cost and demographic data from 563 respondents and their hospital bills and employed latent variable analysis to assess socioeconomic status. The majority of patients belonged to the middle and lower socioeconomic status categories (85.97%), and they were primarily farmers and herders (82.77%). The median direct cost per brucellosis episode was USD 688.65, with out‐of‐pocket expenses amounting to USD 391.44. These costs exceeded both the 2020 Xinjiang and national per capita health expenditures (USD 233.66 and USD 267.21, respectively). Notably, the overall medical reimbursement rate was 48.60%, and for outpatient costs, it was merely 12.82%. Despite higher out‐of‐pocket costs among high socioeconomic status patients, the percentage of income spent was higher (37.23%) for patients in the lower socioeconomic status group compared to other groups (16.25% and 12.96%). In conclusion, our findings highlight that brucellosis patients are predominantly from the middle and lower socioeconomic status, with high out‐of‐pocket expenses placing them under significant financial pressure. Moreover, there is notable inequity in economic consequences across different socioeconomic status groups. These results call for policy interventions aimed at reducing brucellosis‐related poverty and promoting equitable access to care. [ABSTRACT FROM AUTHOR]

The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established 'coping' as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In‐depth interviews were conducted with a purposive sample of family carers (n = 18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed 'social coping' (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term. [ABSTRACT FROM AUTHOR]

Purpose. To examine attitudes regarding acute hospital at home (AHaH). Materials and Methods. A SWOT (strengths, weaknesses, opportunities, and threats) questionnaire was developed to interview 14 managers from health management organizations (HMOs) and hospitals. A mixed-method (qualitative/quantitative) analysis was used. Results. AHaH was provided by hospital or HMO staff or outsourced (private suppliers). Differences in service pertained mainly to on-site testing and imaging tools. All agreed that AHaH is favorable for patient outcomes and experience and that AHaH promotes medical service and clinical development. Barriers expressed were as follows: choosing the right patient; burden for caregivers and family; unclear financial incentive for providers; insufficient standardization, risk management, and quality control (expressed mainly by hospital representatives); and limited on-site testing, imaging, and telemonitoring (mainly expressed by HMO representatives). Conclusions. To increase use of AHaH, further development of on-site testing, imaging, telemonitoring, standards, and financial planning is needed. Research regarding quality and quantity, mid- and long-term medical implications, caregiver implications, and long-term systemic financial implications is required. Evaluating the fit between AHaH service provider (hospital/outsourced/HMO), patient group, and diagnosis is advised. [ABSTRACT FROM AUTHOR]

Background. Family caregivers in charge of patients with advanced cancer play an essential role. The psychosocial cost of these caregiving activities has been studied, and psychosocial interventions have been developed to improve the quality of life of family caregivers. A deeper understanding of caregivers' burden is essential in order to enhance the benefits of these interventions. The aim of this study was to explore the socioeconomic and cultural factors responsible for shaping the complex personal experience of family caregiving and to analyse the moral dimensions of the caring experience so as to understand its effects on family caregivers more clearly. Materials and Methods. A qualitative study based on in-depth interviews was conducted with patients with advanced cancer (n = 20) and their family caregivers (n = 19) from 2017 to 2020. These interviews were analysed using an inductive approach and an iterative procedure. A thematic analysis was then performed using Tronto's "ethic of care" framework in order to identify the various levels of responsibility and the relationships and effects involved. Results. Providing patients with advanced cancer with informal care is highly valuable work requiring various moral qualities, including attentiveness, responsibility, competence, and responsiveness. The mental load resulting from the moral aspects of care results from the cumulative effects of carers' attentiveness and the responsibilities they have taken on. Conclusion. The present findings could guide healthcare professionals to develop best practice resources and guidelines in order to alleviate the hitherto underestimated effects of caring and promote a coordinated public health approach addressing the needs of caregivers. These efforts are particularly important as contemporary health policies tend to promote the shift from inpatient to outpatient treatment, which increases the importance of informal caregiving and the burden involved. [ABSTRACT FROM AUTHOR]

Purpose. Family caregivers are under a lot of burden during the treatment of patients with COVID-19. This study aimed at determining the effect of education through telenursing on the caregiver burden among family caregivers of COVID-19 patients. Design and Methods. This was a randomized clinical trial that was performed on 66 caregivers of COVID-19 patients discharged from Vasei Hospital, Sabzevar, Iran, during 6 months from March to August 2021. The research units were selected using the convenience sampling method and were randomly allocated to two groups, intervention and control, by using permutation blocks. The training workshop and telenursing were conducted in the experiment group, and the control group received only usual care. Novak and Guest care burden scale and demographic questionnaire were collected online by caregivers before and one month after the intervention. Data were analyzed by using SPSS version 24 and paired t-test, independent t-test, Fisher's exact test, chi-square tests, and covariance analysis. The significance level of the tests was considered to be 5%. Findings. After training the intervention group, the mean caregiver burden before and one month after the intervention was significantly decreased compared to the control group (p < 0.001). The groups show a significant difference only in terms of educational resources (p = 0.005). The results of analysis of covariance for the total caregiver burden score in post-test indicated that the mean values of the caregiver burden score between the two groups were statistically significant (p < 0.05). Practice Implications. Telenursing has suggested that health care managers put the telenursing process by creating appropriate policies and careful planning. [ABSTRACT FROM AUTHOR]

Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers' priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer alignment to caregiver preferences such as family and social support. [ABSTRACT FROM AUTHOR]

Purpose. This study investigated the experiences and expectations of unpaid caregivers who were members of a nonprofit social support organisation. Design and Methods. Colaizzi's phenomenological exploration was followed. Data were saturated after 15 in-depth individual interviews at a centre for people affected with dementia. Findings. The themes reported with the COREQ checklist were contributory to caregiver burden, the escalation of dementia symptoms, changes in family roles, psychological distress, social challenges, membership in a social network, and developing effective coping skills. Practice Implications. Access, availability, and continuity of psychosocial support programs are vital for the wellbeing of people affected with dementia. [ABSTRACT FROM AUTHOR]

We developed a pandemic telephone outreach protocol to identify risk for social isolation, health destabilization, medication issues, inadequate services and supports, and caregiver stress among older adults at high risk of destabilization. Screening, conducted between April 1, 2020, and May 8, 2020, was targeted to those who had previously been screened as frail or who were identified as vulnerable by their family physician. This study describes the implementation and results of this risk screening protocol and describes patient, caregiver, and health professional perceptions of this outreach initiative. Mixed methods included satisfaction surveys and interviews completed by patients/caregivers (N = 300 and N = 26, respectively) and health professionals (N = 18 and N = 9, respectively). A medical record audit collected information on patient characteristics and screening outcomes. A total of 335 patients were screened in the early weeks of the pandemic, of whom 23% were identified with at least one risk factor, most commonly related to the potential for health destabilization and medication risk. Follow-up referrals were made most frequently to physicians, a pharmacist, and a social worker. The outreach calls were very well received by patients and caregivers who described feeling cared for and valued at a time when they were socially isolated and lonely. The outreach calls provided access to trusted COVID-19 information and reassurance that health care was still available. The majority of health professionals (>86%) were "very" or "extremely" satisfied with the ease of completing the screening via telephone and value for time spent; for 79% the protocol was "very" or "extremely" feasible to implement. Health professional interviews revealed that patients were unaware they could access care during the pandemic lockdown but were reassured that care was available, potential crises were averted, and they supported future implementation. Risk screening provides a significant opportunity to provide information, support, and mitigate potential risks and is an important and feasible component of pandemic planning in primary care. [ABSTRACT FROM AUTHOR]

The aim of this study was to reveal the factors that most contribute to caregiver burden in informal adult caregivers, caring for adult care recipients in homecare settings in Austria. A quantitative supplementary secondary analysis based on the dataset of the Austrian Caregiver Study was conducted between February 2021 and March 2022. Based on the dataset of the primary study, which was deemed representative for caregivers in homecare context, 2532 caregivers (92.3% of the cases) were selected for data analysis. Theoretically relevant regressors on caregiver burden, which were available in the dataset, were identified based on an adaptation of Pearlin's framework of caregiver stress. Data analysis was conducted using descriptive statistics followed by multifactorial analysis of variance and a logistic regression model. Multiple variables, related to (1) sociodemographic characteristics of both care recipients and caregivers; (2) caregiving situation; (3) family-, work-, and finance-related characteristics; (4) availing social support and services, emerged as statistically significant owing to their influence on caregiver burden. Further data analysis illustrated that the five variables with the greatest impact on caregiver burden were as follows: (1) caregiver's health status, (2) care recipient's behavioral problems, (3) frequency of provision of direct care, (4) time spent on care, and (5) care dependency level. [ABSTRACT FROM AUTHOR]

Mobile health as one of the new technologies can be a proper solution to support care provision for the elderly and provide personalized care for them. This study is aimed at reviewing the benefits and challenges of personalized mobile health (PMH) for elderly home care. With a systematic review methodology, 1895 records were retrieved by searching four databases. After removing duplicates, 1703 articles remained. Following full-text examination, 21 articles that met the inclusion criteria were studied in detail, and the output was presented in different tables. The results indicated that 25% of the challenges were related to privacy, cybersecurity, and data ownership (10%), technology (7.5%), and implementation (7.5%). The most frequent benefits were related to cost-saving (17.5%), nurse engagement improvement (10%), and caregiver stress reduction (7.5%). In general, the number of benefits in this study was slightly higher than the challenges, but in order to use PMH technologies, the challenges presented in this study must be carefully considered and a suitable solution must be adopted. Benefits can also be helpful in persuading individuals and health-care providers. This study shed light on those points that need to be highlighted for further work in order to convert the challenges toward benefits. [ABSTRACT FROM AUTHOR]

Qualitative meta‐synthesis is a coherent approach to answering an overarching research question by synthesising past qualitative studies so as to create new meanings from their results. We conducted a qualitative meta‐synthesis to systematically evaluate and integrate the caregiving experiences of adult children providing care for an elderly parent with cancer. The search was conducted in the databases Web of Science, PubMed, Embase, MEDLINE, Cochrane Library, Grew Literature in the Health Sciences, CNKI, WanFang Data, VIP, SINOMED and China Academic Journals as well as Chinese grey literature databases (China Academic Conference Literature Database/中国学术会议文献数据库, National Science and Technology Library) from inception to June 9, 2021. Thirteen studies were included in the final synthesis. The caregiver experiences they describe are synthesised into three primary themes: care needs, care burden and care gains, with numerous secondary themes. Besides our findings that seem to align with those from studies focused on other cultures, we have highlighted three main discoveries from the synthesis that stand out in the Chinese context: (1) many sub‐themes related to specific caregiving skills; (2) a strong expectation for health professionals to improve their communication skills with family caregivers; (3) the negative and positive influences of filial piety in caregiving experiences. Our findings can help multidisciplinary healthcare teams in China support adult children as caregivers in their emphasis on improving caregiver education and training, ways of making the most of potential care gains, and ways of easing care burdens. [ABSTRACT FROM AUTHOR]

There is now a significant body of research demonstrating the importance of supporting the couple's relationship for people living with dementia. Maintaining a strong relationship has been demonstrated to slow cognitive decline in dementia, reduce the caregiver's sense of burden and may delay the need for transfer into residential care. However, the potential for healthcare practitioners to deliver interventions to support the couple's relationship in the community remains largely unexplored. This scoping review aimed to locate interventions that support couples to maintain their relationship satisfaction when living with dementia. This review mapped studies across a broad range of disciplines and research methods, following the Joanna Brigg's Institute (JBI) framework. Following screening, 44 studies were identified. The approach of these programmes can be broadly grouped into three categories; Adaptation and use of shared activities to enhance the couple's relationship; Developing caregiver skills and reducing perceived burden to improve interaction and relationship quality; Connecting and strengthening the couple's relationship through sharing feelings and memories. Further research is required to explore the possibility and appropriateness of adaptation of these interventions for use by community healthcare practitioners. There is a need to identify interventions that can meet the needs of couples as dementia progresses into the moderate–severe stages. Heterogeneity and inconsistency in outcomes measurement for the couple's relationship, suggests the need to consider further how outcomes for couple's relationship quality may best be captured. It is also suggested that other existing programmes, outside of the scoping review results, but aimed at reducing dementia caregiver burden may have currently unexplored and developed outcomes for couple's relationship quality. [ABSTRACT FROM AUTHOR]

The aim of the present systematic review was to investigate cultural factors associated with burden in unpaid caregivers of older adults. Searches were conducted in the Pubmed, Web of Science, PsycInfo, Scopus, Embase, LILACs and SciELO databases for relevant articles published in English, Portuguese and Spanish using the search terms 'Caregiver AND Culture AND (Burnout OR Caregiver Burden) AND Aged'. No restriction was imposed regarding year of publication. A total of 1234 articles were identified, 34 of which were selected for the present review. The following sociodemographic characteristics were associated with burden: being female, married, White caregivers, young and the spouse of the care recipient; having no siblings; having low schooling and low economic status. Cultural factors associated with burden were living with the care recipient, not professing a religion or having little spirituality, familism (i.e. less reciprocity) and an absence of social support. The present findings underscore the importance of developing intervention strategies that consider cultural factors to minimise the negative impacts of care on unpaid caregivers of older adults. [ABSTRACT FROM AUTHOR]

Extensive studies have explored the factors affecting caregiving stress, but how oral health of care recipients (CRs) associates with caregiving stress and the mechanism behind it are not well‐known. Guided by Stress Process Theory, this study addressed such research gaps. Caregiver services dataset came from the 13th National Survey of Older Americans Act Participants in the United States (N = 1289). Caregiving stress included physical, emotional, and financial stress. The oral health of CRs was self‐rated by a single item. The functional ability of CRs was assessed by activities of daily living (ADLs) and instrumental activities of daily living (IADLs). PROCESS 3.4 for SPSS 26.0 was used to conduct the mediation analyses. Results from the study showed that caregivers reported slightly high levels of physical (M = 3.06, SD = 1.33, Range = 1–5), emotional (M = 3.43, SD = 1.28, Range = 1–5), and financial (M = 2.83, SD = 1.43, Range = 1–5) stress. The results from hierarchical linear regression revealed that poor oral health of CRs was significantly associated with higher levels of physical (B = 0.11, p < 0.001), emotional (B = 0.09, p < 0.01), and financial (B = 0.12, p < 0.001) stress, respectively. The functional ability of CRs mediated such relationships between the oral health of CRs and the caregiving stress of their family caregivers. Findings from this study enrich our theoretical and practical understanding of caregiving stress in aged care and offer programs and policy implications of oral and physical healthcare for community‐dwelling older adults. [ABSTRACT FROM AUTHOR]

In the Netherlands, about one‐third of the adult population provides unpaid care. Providing informal caregiving can be very straining in normal times, but the impact of a public health crisis on caregivers is largely unknown. This study focuses on the question of how caregiver burden changed following the COVID‐19 pandemic, and what characteristics were related to these changes. We use self‐reported data from a sample of 965 informal caregivers from the Netherlands 3 months into the pandemic to investigate how the objective burden (i.e. hours spent on caregiving) and the subjective burden had changed, and what their care‐related quality of life (CarerQol) was. We found that on average the subjective burden had increased slightly (from 4.75 to 5.04 on a 0–10 scale). However, our analysis revealed that some caregivers were more affected than others. Most affected caregivers were women, and those with low income, better physical health, decreased psychological health, childcare responsibilities, longer duration of caregiving and those caring for someone with decreased physical and psychological health. On average, time spent on care remained the same (a median of 15 h per week), but certain groups of caregivers did experience a change, being those caring for people in an institution and for people with a better psychological health before the pandemic. Furthermore, caregivers experiencing changes in objective burden did not have the same characteristics as those experiencing changes in perceived burden and quality of life. This shows that the consequences of a public health crisis on caregivers cannot be captured by a focus on either objective or subjective burden measures or quality of life alone. Long‐term care policies aiming to support caregivers to persevere during a future crisis should target caregivers at risk of increased subjective burden and a lower CarerQol, such as women, people with a low income and people with childcare responsibilities. Such policies should consider that reducing objective burden may not necessarily lead to a reduction in subjective burden for all caregivers. [ABSTRACT FROM AUTHOR]

Taking care for older adults can place informal caregivers at risk for developing health problems. Therefore, interventions aiming to empower informal caregivers have been developed. Empowerment refers to a health promotion process including strategies to improve informal caregivers' self‐care behaviours, stress‐management and caregiving skills. In literature, empowerment‐oriented interventions often target subsamples of informal caregivers defined through the care receiver's condition. These interventions, however, do not adequately capture the complexity of care needs and might even exclude informal caregivers taking care for older people without a specific diagnosis or with a subthreshold condition. Therefore, the aim of this systematic review is to provide an overview of the content and effectiveness of empowerment‐oriented interventions directed at informal caregivers of community‐dwelling older adults. Following the PRISMA guidelines, a systematic review was performed by searching the following databases: PubMed, PsycINFO, EMBASE and Web of Science. From a total of 6798 unique publications, 13 intervention studies, of which seven randomised controlled trials, were eligible for inclusion. According to the Mixed Methods Appraisal Tool, eight studies scored poor. The intervention studies under review represented different domains of empowerment, with cultivation of positive feelings being the most prevalent one. Social participation and physical health received little attention in interventions. Although no adverse intervention effects were observed, the studies reported mixed results with 57 positive and 47 neutral effects. The limited number and poor quality of studies emphasise the need for future research investigating the effectiveness of empowerment‐oriented interventions targeting informal caregivers of older adults. [ABSTRACT FROM AUTHOR]

Non‐kin carers provide vital resources for older people living alone with increasing care needs, especially if they cannot rely on the support of family members. However, this kind of commitment presents numerous challenges throughout the care trajectory and beyond. To explore these aspects in more depth, a qualitative study was designed including a retrospective interpretation of interview data with non‐kin carers (n = 15) and additional in‐depth interviews (n = 8) with people who had cared for an older person living alone with no family nearby. Analyses of the verbatim transcriptions followed coding procedures and were supported by MaxQDA software. Our findings demonstrate that non‐kin carers had to negotiate personal boundaries continuously over the end‐of‐life trajectory to deal with the increasing complexity of care demands and overburdening situations. Following the older person's death, non‐kin carers were involved in funeral arrangements and settled practical or legal matters when no family members were available or had little inclination to contribute. The findings highlight that non‐kin carers make a great effort to safeguard the interests and needs of older people living alone, ensuring their autonomy and dignity towards the end of life and beyond. However, the burdens experienced require future research to better understand the support needs of non‐kin carers providing end‐of‐life care for an older person living alone. [ABSTRACT FROM AUTHOR]

This study investigated the factors associated with clinical symptoms and level of functioning at baseline and after 4 months of navigation, in youth with mental health and/or addiction concerns involved with a family navigation service. Participants in this pre‐post study were caregivers who accessed a mental health and addictions navigation service between March 2018 and July 2019 on behalf of their youth aged 13–26 who had mental health and/or addiction concerns. Evaluations were conducted at baseline and at 4 months after entering navigation. The dependent variable, youth mental health symptoms and functioning, was assessed by caregivers using the Symptoms and Functioning Severity Scale. The sample included 345 caregivers of youth (youth: mean age 18 years, 57% male). At intake, using multiple linear regression, caregiver strain (β = 0.481, p < 0.001), youth completion of ADLs (β = −0.156, p = 0.002) and youth motivation (β = −0.110, p = 0.021) contributed significantly to variance in symptoms and functioning (R2 = 0.373, p < 0.001). Using ANOVA to compare complete pre/post data (n = 115), there was a significant main effect of time on the youth symptoms and functioning score (F[1, 107] = 9.278, p = 0.003). Furthermore, the interaction of time, youth completion of ADLs (low vs. high at baseline) and youth motivation (low vs. high at baseline) was significant (F[1, 107] = 4.699, p = 0.032). Youth with low motivation and low completion of ADLs at baseline experienced the largest improvements in symptoms and functioning after 4 months of navigation. These findings suggest that this group of youth should be a primary target in mental health and addiction navigation. [ABSTRACT FROM AUTHOR]

Grandparenting is known to impact psychological health in older people. However, the extent to which the effect is altered by migration‐related and sociodemographic determinants is less clear. Therefore, we conducted this cross‐sectional study to investigate whether the association between grandparenting and psychological distress differs between rural–urban migrants and local older adults from May to September 2019. A total of 373 rural–urban migrants and 602 local older adults involved in grandparenting in Hangzhou completed measurements assessing sociodemographic characteristics, childcare burden and psychological distress. In total, 22.2% of the grandparents reported psychological distress. Rural–urban migrant grandparents had a lower socioeconomic status (SES), a higher childcare burden (23.6 ± 9.2 vs. 20.7 ± 9.5, p < 0.001) and higher levels of psychological distress (29.8% vs. 17.4%, p < 0.001) than local grandparents. Childcare burden and pressure from adult children were the most significant predictors for psychological distress in both groups (ps < 0.05). Psychological distress was also significantly associated with self‐rated health status (β = −0.276, p = 0.033) and willingness to participate in grandparenting (β = −0.659, p = 0.024) in migrant grandparents but associated with female gender (β = 0.346, p = 0.022), caring for children at night (β = 0.424, p = 0.011), conflict with adult children (β = 0.432, p < 0.001) and annual income (β = −0.237, p < 0.001) in local grandparents. Migrant status showed a statistically significant moderating effect between childcare burden and psychological distress. These results may be of assistance in comprehensively understanding the social determinants of mental health of grandparents involved in grandparenting. [ABSTRACT FROM AUTHOR]

Care‐giving burden and internalised stigma are prevalent among family caregivers of people diagnosed with schizophrenia. Internalised stigma has been regarded as a source of care‐giving burden. But it remains unclear if high levels of internalised stigma directly contribute to an increased risk of care‐giving burden or if the effects could be buffered by psychological factors. This cross‐sectional study was to investigate the relationship between internalised stigma and care‐giving burden, and to determine the mediating effects of coping styles and social support. Data were collected from 344 Chinese family caregivers of adults diagnosed with schizophrenia in a psychiatric outpatient department of a tertiary hospital in Changsha, Hunan between April and August 2018. A self‐reported questionnaire was used to collect data anonymously. Instruments included the Simplified Coping Style Questionnaire, the Multidimensional Scale of Perceived Social Support, the Internalized Stigma of Mental Illness Scale and the Caregiver Burden Inventory. Data analysis was conducted using descriptive statistics, the Spearman correlation and regression analysis to estimate direct and indirect effects using bootstrap analysis. Results showed that internalised stigma, social support and passive coping were significant correlates of care‐giving burden; social support partially mediated the relationship between internalised stigma and care‐giving burden; active coping did not show impacts on internalised stigma and care‐giving burden. This study provided social workers and healthcare providers with a better understanding of the development of care‐giving burden. Comprehensive interventions should be designed to provide supportive resources and reduce the possibilities of internalisation of stigma and passive coping, to alleviate care‐giving burden. [ABSTRACT FROM AUTHOR]

Introduction: Existing research has found that both lung cancer patients and their informal caregivers reported higher level of emotional distress and psychological maladjustment. However, limited attention has been afforded to collective emotional experiences in patient‐caregiver dyad, especially during progression‐free survival. Objective: This study attempted to explore extrinsic emotional regulation experienced by lung cancer patients and familial caregivers in China. Methods: By adopting a qualitative descriptive approach, data were collected using face‐to‐face, in‐depth semi‐structured interviews from July to August 2021. Using purposively sampling, this study interviewed 13 patients and 7 caregivers through conjoint and individual interviews. Results: Based on data analysis, findings demonstrated emotional congruence, implicit emotional disclosure and emotional contagion within families as indicators of mutual responsiveness to cancer in patient–caregiver dyads. Furthermore, caregivers tended to adopt relationship engagement to facilitate patients to maintain mental wellness during PFS. Oncology care should promote the implement of patient‐ and family‐centred care, especially enhancing dyadic coping in emotional regulation. Conclusion: Patients and caregivers experienced mutual responsiveness to cancer‐induced emotions. Additionally, caregivers adopted relationship‐based care ethics to facilitate patients to maintain mental wellness. [ABSTRACT FROM AUTHOR]

Objective: Relatives of patients with advanced cancer often have many caring responsibilities. Not everyone may have sufficient knowledge, skills, and confidence—also known as caregiver activation—to provide such care. We assessed caregiver activation in relatives and its association with their personal characteristics and their own well‐being. Methods: A cross‐sectional study among relatives of patients with advanced cancer. Measures included caregiver activation (C‐PAM), resilience, personal self‐care, caregiver burden, depressive symptoms, quality of life, and social well‐being. The C‐PAM distinguishes four levels of activation, ranging from poor (level 1) to adequate (level 4). Bivariate and multivariable regression analyses were performed. Results: Two hundred fifty‐four relatives were included; 32% had level 1 activation, 30% level 2, 27% level 3 and 11% level 4. Higher levels of caregiver activation were found among partners, those who provided more hours of informal care, were more resilient, and scored higher on personal self‐care. Higher caregiver activation was associated with lower caregiver burden, less depressive symptoms, and better social well‐being. Conclusion: In our study, the majority of relatives seem insufficiently prepared to provide care for their loved one. Supporting them in gaining knowledge, skills, and confidence to provide such care may improve their own well‐being. [ABSTRACT FROM AUTHOR]

Objective: The aims of this study were to investigate the association between patients' awareness of their terminal illness and the levels of anxiety and depression, whether the concordance between the patients' and caregivers' belief about the patient's terminal illness was associated with patient's anxiety and depression, and with the caregiver burden. Method: The study recruited 31 terminally ill patients with cancer along with their caregivers from a Palliative Care Unit. All data about patients and caregivers' awareness of the illness, patients' depression and anxiety, and caregiver burden were collected. Results: Patients aware of their short‐term prognosis of death showed lower levels of anxiety than the unaware ones, especially women. Aware patients with concordant caregivers showed lower levels of anxiety but not of depression. Caregivers concordant with the patients' awareness presented lower levels of strain and burden. Finally, terminal patients who had an adult child caregiver were less likely to be aware of their terminal condition. Conclusions: It appears that illness awareness and the caregiver's concordance with the patient's belief on the terminal condition are associated with lower anxiety, especially in women, and a reduced burden for caregivers. [ABSTRACT FROM AUTHOR]

Purpose: The study investigates the predictors of caregivers' experienced burden, stigma, and well‐being, when looking after family members diagnosed with a psychiatric disorder. Design and Methods: This cross‐sectional study included 168 caregivers; perceived burden, stigma, well‐being, knowledge, illness perception, and medical variables were assessed. Findings: A number of correlates of burden, stigma, and well‐being have been identified and are being discussed. The integrative predictive model showed that the caregiver's emotional representation of illness best predicts burden (β = 0.38, p < 0.001), stigma (β = 0.53, p < 0.001) and well‐being (β = −0.36, p < 0.001). Practice Implications: Our results can enable health professionals to tailor psychosocial interventions addressed to family members of individuals living with a psychiatric condition. [ABSTRACT FROM AUTHOR]

What Is Known and Objective: The dispensing of clotting factor concentrates in hospital pharmacies imposes accessibility constraints on patients and their caregivers, thereby increasing the disease burden. Very few studies have addressed these issues so far in terms of individual perceptions and actual difficulties. The PHAREO study aims to report patient's perception of treatment accessibility and evaluate spatial accessibility. Methods: The PHAREO study is an observational survey based on a questionnaire specifically designed for the study purpose in collaboration with patients' representatives in the second demographic and economic French region. Results and Discussion: We collected 293 responses (participation rate of 64.1%) which show that 89.8% of respondents were either very or rather satisfied with regard to access to treatment. However, respondents reported difficulties in accessing the hospital pharmacy. The data also showed that 79.2% of respondents tended to over‐estimate travel time which was reported above their acceptable threshold for 39.2% of them. The main determinants of dissatisfaction were parental burden (OR 2.5 [1.3; 4.8], p = 0.008) and waiting time at the hospital pharmacy (OR 1.5 [1.1;2.0], p = 0.016, per 10 min increase). What Is New and Conclusion: The PHAREO study provides subjective and objective data regarding satisfaction levels of persons with haemophilia and other coagulation deficiencies, with a high representativeness rate for patients on prophylaxis (87.5%). Both respondents and hospital pharmacists pled for an evolution of the current dispensing circuit to improve access to treatment and reduce the burden for patients. Currently, the community pharmacists are apart from the dispensing circuit. The authors propose improvements in the pathway of care for patients and their caregivers by including the community pharmacists alongside the hospital pharmacists in a centralized coordination scheme. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic has greatly affected the delivery of cancer care. Due to social restrictions and reductions in health service contact, it is expected that the burdens experienced by informal carers have risen. This study provides an analysis of cancer carer's experiences and needs as a consequence of the pandemic. An online mixed method design was used. The survey included open‐ended responses to explore carer's experiences and measures of health status (EQ‐5D‐5L), Quality of Life (WHOQoL‐BREF) and impact of COVID‐19. Open‐ended responses were analysed thematically according to Miles and Huberman techniques and quantitative data were analysed descriptively. One hundred and ninety‐six cancer carers participated in the online survey. Mixed method analysis demonstrated that carers were experiencing major difficulties. Of these n = 142/72.4% experienced challenges related to anxiety and depression; 35.2% rated these problems as slight with 25% rating these as moderate and 11.2% as severe. Qualitative analysis identified significant and sustained negative impacts of the pandemic on psychological health, social isolation, finance and access to health services with carers requiring urgent information and support. Carer's challenges have deepened throughout the COVID‐19 pandemic. There is an urgent need to develop innovative ways to provide support for carers to provide palliative and supportive care at home now and during recovery from the pandemic. Due to the need for infection control meaningful development and integration of urgent digital technology might be the most feasible solution. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID‐19 among community‐dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community‐based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community‐based services in Italy, participated in remote semi‐structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in‐person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID‐19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID‐19. Face‐to‐face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face‐to‐face activities could better counterbalance the multiple adverse outcomes of COVID‐19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high‐quality care even during pandemic times. [ABSTRACT FROM AUTHOR]

Family caregivers provide long‐term, home‐based, informal medical care to patients with special healthcare needs. We examined whether informal care involving medical device use is associated with caregiver burden, considering potential risk variables as moderators. Data were collected from March to May 2019 through a Japanese public visiting care system. This system is offered to patients with severe chronic or intractable disease or impairment. After contacting government‐certified offices that provide visiting care systems, the offices that agreed to participate invited dyads of patients and caregivers to complete our questionnaire. To focus on new parameters other than the caregiver factor that had been clarified previously, we aimed to analyse the data from patient–caregiver dyads. Using a questionnaire‐based cross‐sectional design, we asked participants about caregiver and patient characteristics, care types, and caregiver burden using the Zarit Caregiver Burden Interview. Logistic regression analyses were conducted to test the association between caregiver burden and informal medical care. Data from 371 complete patient–caregiver dyads were analysed; 49.3% showed high caregiver burden, and 40.4% were administering at least one informal medical care procedure. Univariate analyses indicated a relationship between high caregiver burden among caregivers who slept less, provided care for longer periods daily, performed medical care procedures and cohabited with patients. Importantly, logistic regression analyses indicated a significant relationship between high caregiver burden and care involving multiple medical procedures (i.e. 4–6 procedures with medical devices; adjusted odds ratio (AOR) = 2.03, 95% confidence intervals (95% CI) = [1.01, 4.09]). In propensity‐matched participants (n = 314), results continued to show that multiple medical care procedures were significantly related to high caregiver burden (AOR = 2.19, 95% CI [1.14–4.22]). The effects of non‐medical informal care on caregiver burden were moderate. This result suggests that more intensive interventions are required for patients with multiple medical care needs to reduce caregiver burden. [ABSTRACT FROM AUTHOR]

The purpose of this study was to examine the associations between caregiver's burden and three components of burnout (emotional exhaustion, depersonalisation, and sense of personal accomplishment) among family caregivers, as well as the moderating effects of emotional empathy on these associations. We conducted a cross‐sectional study of 300 informal caregivers caring for their elderly relatives in the Arab community in Israel, using face‐to‐face structured interviews in Arabic. Three hierarchical regressions were applied to examine the factors related to each of the burnout components. Additional bootstrapping with resampling strategies was used to test the moderation effects of emotional empathy. The results showed positive correlations between caregiver's burden and two burnout components, emotional exhaustion and depersonalisation, but not with personal accomplishment. Greater emotional exhaustion and depersonalisation levels were related to higher emotional empathy. Perceived social support is linked negatively with emotional exhaustion and depersonalisation levels, and positively with personal accomplishment. In addition, emotional empathy emerged as a moderator in the associations between caregiver burden and two components of burnout: emotional exhaustion and depersonalisation. Interventions for familial caregivers should aim to heighten social support and to educate caregivers on effectively regulating their emotional empathy to reduce caregiver's burden and burnout. [ABSTRACT FROM AUTHOR]

Informal caregivers are key players in maintaining chronically ill patients at home but often experience negative consequences such as informal caregiver burnout. The processes by which determinants related to informal care and their personal and social resources affect the caregiver's risk of burnout remains little investigated. Recent theoretical works have suggested that two mediators could play an important role in understanding how these risks and resources influence informal caregiver burnout: by deteriorating how they view their role (caregiving appraisal) and by weakening the relationship with the care‐recipient (relationship quality). The present study aimed at exploring the impact of the care‐recipient's dependency (WHODAS), the caregiver's emotional intelligence (TEIQue‐SF), and loneliness (UCLALS) on informal caregiver burnout (MBI‐ICg). This association was explored both directly and through the mediation of caregiving appraisal (measured by subjective burden, ZBI) and relationship quality. To do so, a sample of 444 French‐speaking informal caregivers completed online questionnaires from November 2017 to August 2018. Structural equation modelling (SEM) was performed to test the mediation model. As a result, the caregiving appraisal appears as a key mediator between determinants and informal caregiver burnout, whereas the relationship quality had a lower predictive value. Among the determinants, emotional intelligence was the strongest protective factor and the care‐recipient's dependency was the strongest risk factor. But beyond this association, the perception informal caregivers have of their role (their caregiving appraisal) is a key mediator between these determinants and informal caregiver burnout, which emphasizes the importance of subjectivity in building risk and protective profiles. [ABSTRACT FROM AUTHOR]

The aim of this qualitative research is to examine the difficulties perceived by caregivers for taking part in an offered intervention, exploring whether there are differences depending on caregiver's degree of kinship. Forty‐two family caregivers from Salamanca (Spain) were interviewed after declining an invitation to take part in an intervention programme. All the telephone conversations were transcribed verbatim. The transcriptions were subject to a thematic content analysis using QDA MINER software. The barriers identified were (1) difficulties adapting to the intervention's schedule due to a lack of time, or incompatibility with its dates or timetables, (2) belief among the caregivers that they do not need or are not interested in the support the intervention provides, (3) impossibility to separate from the family member to attend due to the absence of relief or a feeling of guilt, (4) caregiver's health issues, (5) difficulties with accessibility, and (6) belief that the therapies serve no useful purpose. Certain differences were identified depending on the caregiver's kinship. Understanding the difficulties caregivers face for taking part in the interventions will enable steps to be taken to remove and/or reduce such barriers, whereby more caregivers will benefit from interventions. [ABSTRACT FROM AUTHOR]

Compassion has been suggested as a relevant variable for understanding dementia caregivers' psychological distress. The objectives were to analyse the psychometric properties of the Caregiving Compassion Scale (CCS) and to explore the association between caregivers' compassion and their emotional health. Two hundred and thirty‐six dementia caregivers were evaluated for compassion, depressive symptoms, guilt, ambivalence, care‐recipient's functional and cognitive status, frequency of behavioural problems and desire to institutionalise the care‐recipient. Exploratory factor analyses, correlations and regression analyses were done. Two factors were obtained. The factor labelled "Distress from witnessing the care recipient suffering" was associated with higher stress linked to witness depressive problems in the care‐recipient and with caregivers' ambivalence and guilt levels. The factor labelled "Motivation/disposition for helping" was associated with less desire for institutionalisation, and it showed a negative association with ambivalence and guilt feelings. The CCS seems to be a valid and reliable scale for assessing compassion in dementia caregivers. [ABSTRACT FROM AUTHOR]

Informal caregivers, mainly family members and friends, provide supportive and palliative care for people with amyotrophic lateral sclerosis (ALS) during their terminal disease course. Informal caregiving for people with ALS continues towards palliative care and end‐of‐life care with the progression of the disease. In this study, we provide a theoretical understanding of informal caregiving in ALS utilising 23 semi‐structured interviews conducted with informal caregivers of people with ALS (pwALS) in Switzerland. Due to the expected death of the care recipient, our grounded theory approach outlines informal caregivers' caregiving work as an effort to secure a balance amongst different caregiving activities, which feed into the final stage of providing palliative care. Overall, our theoretical understanding of ALS informal caregiving work encompasses the core category 'holding the balance' and four secondary categories: 'Organising support', 'being present', 'managing everyday life' and 'keeping up with ALS'. The core category of holding the balance underlines the significance of ensuring care and normalcy even as disease progresses and until the end of life. For the informal caregivers, this balancing act is the key element of care provision to pwALS and therefore guides decisions surrounding caregiving. On this understanding, those caregivers that succeed in holding the balance can provide care at home until death. The balance is heavily influenced by contextual factors of caregiving, for example relating to personal characteristics of the caregiver, or activities of caregiving where the goal is to ensure the quality of life of the pwALS. As there is a heterogeneity of speed and subtype of progression of ALS, our work accounts for multiple caregiving trajectories. [ABSTRACT FROM AUTHOR]

Schizophrenia is a major mental illness attributed to demonic influences in sub‐Saharan Africa. In Nigeria specifically, schizophrenia is seen as an illness caused by the god of the sun, and it is believed that the condition of individuals suffering this illness worsens during the summer. This and many other beliefs result in people thinking that those with schizophrenia are dangerous and that it is contagious, resulting in avoidance and leaving their care to the family alone. Most times, families seek medical help after chronicity has set in. In many instances, the family unit is the only source of support for people with schizophrenia. The responsibility of care and stigma attributed to schizophrenia can be so enormous that family members feel overburdened; however, in situations where support services are available to help individuals return to their premorbid state or that of independence, there may be a reduction in the care burden faced by families. One such strategy that helps individuals with mental illness live independent lives while reducing their family burden is rehabilitation; this, however, is misconstrued in South West Nigeria. This study assesses the expectations and experiences of family members of individuals living with schizophrenia and undergoing psychiatric rehabilitation in South West Nigerian mental health facilities using a qualitative approach through individual interviews of 21 participants (individuals closely related to someone with schizophrenia and documented as the next of kin). The principal researcher conducted the interviews and both researchers analysed the data using the content analysis approach through NVivo version 11. This study reveals that families of individuals with schizophrenia regard them as a burden, and an ideal rehabilitation of such individuals will give them—both the individual and themselves—complete independence. The findings also reveal that family members believe rehabilitation services in research settings lack material resources and human expertise. This study concludes that family members are not satisfied with the rehabilitation approach and desire home‐ and community‐based commitment of institutions with the rehabilitation of their relatives with schizophrenia. Therefore, this study recommends capacity building/continuous development of professionals and appraisal of clients' support services in terms of finance and empowerment. As such, rehabilitation should achieve the highest priority aftercare with clients, and the family should be educated on exactly what it entails. [ABSTRACT FROM AUTHOR]

Unpaid caregivers, typically family and friends, provide significant amounts of support to people with multiple sclerosis (MS). Understanding their experiences, needs and challenges is necessary to ensure that caregivers receive the support that they require to continue in their role. Our aim was to map the current state of knowledge about unpaid caregivers of people with MS and identify gaps in knowledge to guide future research and practice. We used scoping review methodology with three major health‐related databases (MEDLINE, CINAHL, APA Psychinfo), searching in September 2019, April and October 2020 and October 2021. We selected peer‐reviewed scientific articles reporting on primary studies of unpaid caregivers of people with MS, regardless of topic or research design. We extracted information on study aim, participant characteristics, measures used and key findings to generate major themes and identify knowledge gaps. We identified 108 published studies between 1992 and 2021 that met our criteria. Studies of spousal caregivers were most common. Studies focused primarily on measurement of caregiver burden or other negative consequences of caregiving. Thirteen studies addressed positive consequences of caregiving. Sixteen studies reported actual tasks performed by caregivers and seven reported outcomes of caregiver support interventions. Attention to diversity issues that may influence caregiving experiences and outcomes was rare. Overall, knowledge of MS caregiving is limited, particularly with respect to tasks performed by caregivers that may contribute to negative outcomes, diversity issues and effective approaches to remediate caregiver burden. Without this knowledge, finding ways to better support MS caregivers will be difficult. [ABSTRACT FROM AUTHOR]

Background: Increasingly, informal caregivers in Belgium care in group for an older patient. This study aimed to decrease the caregiver burden and to increase the well‐being of caregivers and patients by supporting the needs of informal care groups of older patients (≥70 years). Method: Through an online self‐management tool, the groups were supported to make informed choices concerning the care for the older patient, taking into account the standards, values, concerns and needs of every caregiver and patient. A pre‐post study was performed. Results: Although patients and caregivers considered the self‐management tool as useful and supportive, no clear evidence for decreased caregiver burden was found. There was a positive trend in group characteristics such as the distribution of tasks, communication and prevalence of conflicts. Caregivers also stated that they took more time for themselves, had less feelings of guilt and experienced less barriers to ask help. Conclusion: Tailor‐made support of informal care groups starts with facilitating and guiding a process to achieve consent within the group to optimise the care for the patient and also for the caregivers. With a shared vision and supported decisions, caregivers can enter into conversations with the professional caregiver to coordinate adjusted support regarding the care needs. [ABSTRACT FROM AUTHOR]

In addition to palliative care delivery at home or in hospital, palliative day care centres occupy an in‐between position in palliative care. In palliative day care centres, multidisciplinary teams provide holistic care and support for people with (chronic) life‐limiting conditions, or clients, in a homely surrounding, allowing them to remain living at home while attending a specialist palliative care service. This study aims to evaluate palliative day care centres from a user perspective. We conducted a full‐population cross‐sectional survey of clients (N = 86) and their family caregivers (N = 63) in all five palliative day care centres in Flanders, Belgium from January until December 2019. We used validated instruments supplemented with self‐developed items to measure participants' reasons for use, support provided, unmet support needs and added value to other (palliative) care services across palliative care domains, i.e., physical, psychological, social and spiritual care. Response rate was 77% for clients and 81% for family caregivers. The most often indicated reasons for use were that the client needs social contacts (clients: 73%, caregivers: 65%), to enable the client to live at home as long as possible (resp. 58%, 55%) and to reduce the family caregiver's mental burden (resp. 42%, 65%). Three out of four family caregivers felt better able to combine daily activities with caring for the client (77%) and felt better able to perform their family care‐giving tasks (77%) because the client attends the palliative day care centre. Thirty‐six per cent of clients had received support for social needs exclusively in the palliative day care centre and not from any professionals outside palliative day care. Palliative day care centres seem to be of added value for those care domains to which often less attention is paid in other settings, particularly social and emotional support, both for clients and family caregivers. [ABSTRACT FROM AUTHOR]

Objective: This study compares the well‐being of rural caregivers with that of the general population and explores the potential drivers of poorer outcomes. Method: Patient–caregiver dyads (n = 241) residing in regional or remote Queensland, Australia, reported on QoL, chronic illness, caregiver burden, depression, anxiety and stress. Caregiver outcomes were compared with population norms and patient outcomes. Multiple regressions were conducted to identify factors associated with poorer caregiver outcomes. Results: Caregivers reported lower mental health‐related QoL (M = 0.436, 95% CI = 0.410–0.462) in comparison with age‐matched population norms (M = 0.556, 95% CI = 0.532–0.580). No differences existed between caregiver and population norms for anxiety, stress and depression. Caregiver chronic illness and higher burden were associated with poorer mental and physical QoL, depression, anxiety and stress (η2s ranging from 0.03 to 0.30). These associations were slightly stronger for male caregivers when compared with female caregivers (η2s ranging from 0.03 to 0.08). Conclusion: It is vital that efforts are made to improve rural caregivers' mental and emotional well‐being. Interventions that support caregivers with chronic conditions reduce caregiver burden and take into consideration the unique experience of male caregivers will go some way to addressing this. Future research is needed to identify other drivers of health outcomes in this group. [ABSTRACT FROM AUTHOR]

Measuring the quality of life in family caregivers of people in palliative care is essential to document the impact of care on the caregiver. This study aimed to adapt and validate a Latin American‐Spanish version of the QOLLTI‐F scale in family caregivers of palliative care patients. This study was conducted between May and November 2019 in Medellin, Colombia. We develop three phases: translation and semantic adaptation (n = 17), face and content validity (n = 21), construct validity, internal consistency (n = 208) and test–retest reliability (n = 35). Main family caregivers of stage‐IV cancer patients receiving palliative treatment, participated. In the translation and semantic adaptation, some items were adjusted following the caregivers' recommendations. In face validity, Fleiss' Kappa was over 0.65 for family caregivers. In content validity, Fleiss' Kappa ranged from 0.54 to 1 for experts. In construct validity, the original version seven‐factor structure did not show appropriate model fit indices. The data revealed instead a new 3‐factor structure related to (1) impact of care‐giving, (2) social and healthcare interactions and (3) meaning of life. Cronbach's alpha was 0.83 for the overall scale. Test–retest reliability was 0.87 between measurements 1 and 2. This study found that The Latin American‐Spanish version of the QOLLTI‐F scale is an understandable, useful, and relevant tool for family caregivers of people with cancer receiving palliative care. Future research is needed to confirm the factor structure identified in this study. [ABSTRACT FROM AUTHOR]

This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020. The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland. To be eligible to participate in the online survey respondents had to be adults caring for someone with a rare disease. Fifty‐seven respondents took part, 15.8% male, 84.2% female. Thirty‐two attendees were part of the facilitated workshop. While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub‐optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support and lack of awareness of existing support services. It is important that strategies are put in place to ensure that carers are given the time they need to care for themselves, and that awareness is raised of what support options are available for carers of people with a rare disease(s) from health and social care providers, charities or support groups. [ABSTRACT FROM AUTHOR]

Caring for youth with mental health and/or addictions (MHA) concerns is associated with caregiver strain, which may lead to negative consequences for youth and their caregivers. These consequences may be mitigated by caregivers and/or youth receiving assistance in navigating the healthcare system. Understanding what factors are associated with caregiver strain may be important in developing and implementing navigation services for such families; nonetheless, limited evidence currently exists regarding the predictors of strain in caregivers seeking navigation support. This study aimed to determine whether (a) the mental health profile of youth and (b) the home and family situation for youth with MHA concerns contribute significantly to strain in caregivers engaged in navigation. Data were collected from 66 adults caring for at least one youth with MHA issues accessing navigation service in Toronto, Ontario, between March and August 2018. Multiple linear regressions were conducted to determine which factors were associated with caregiver strain. The first regression model exploring youth‐specific independent variables (adjusted r2 =.478, F6,47 = 9.086, p <.001) demonstrated that lower levels of caregiver‐rated youth health (β = −0.577, p =.001) and higher levels of youth mental health symptom severity (β = 0.077, p <.001) significantly predicted higher levels of strain. The second regression model (adjusted r2 =.348, F5,54 = 7.287, p <.001) showed that lower levels of family functioning (β = −0.089, p <.001) significantly predicted higher levels of strain. Higher levels of caregiver strain in caregivers of youth with MHA concerns who are accessing navigation services are associated with lower levels of caregiver‐rated youth health, higher levels of youth mental health symptom severity, and lower levels of family functioning. These predictors may be potential targets for providers aiming to reduce caregiver strain, as part of navigation or other healthcare services. [ABSTRACT FROM AUTHOR]

Purpose: To assess if living with a psychiatric patient, depression, anxiety, stress, fatigue, insomnia, spirituality, and religiosity would be associated with more problematic alcohol use, cigarette, and waterpipe dependence in Lebanese caregivers. Methods: A case–control study was performed in Lebanon that recruited 587 caregivers (July–September 2019). Results: Higher religiosity was associated with lower problematic alcohol use. Having low versus no income was significantly associated with more cigarette dependence. Being Christian and high anxiety were significantly associated with more waterpipe dependence, whereas higher insomnia was significantly associated with lower waterpipe dependence. Practical Implications: Family caregivers go through a lot of stress and burden and need help coping with it in a healthy way for better outcomes for them and the care recipient. [ABSTRACT FROM AUTHOR]

Family caregivers play an essential role in healthcare for elderly people in primary care settings. The complexity of geriatric patients as well as the fragmentation of healthcare systems can lead to a burden for family caregivers, which can affect their physical and psychological health as well as social relationships, economic productivity and quality of caregiving. Care‐ and case‐management offers a possibility to support, empower and navigate family caregivers through healthcare systems in order to reduce their own burden. The project RubiN (Continuous care in a regional network) was developed to provide regional care‐ and case‐management for outpatient care of the elderly (age >70 years) in a primary care setting in Germany. The aim of this qualitative study was to explore experiences and attitudes of family caregivers of geriatric patients regarding the community‐based care‐ and case‐management intervention RubiN. Telephone interviews with a purposeful sample of 21 family caregivers enlisted in all RubiN networks were conducted between March and May 2020 and were followed by qualitative content analysis. The main categories, which emerged were namely: (1) current healthcare situation and (2) experiences with RubiN. Main findings suggest that participants in this study valued the provided support and experienced a sense of relief. However, some participants were disappointed with RubiN and the included support by care‐ and case‐managers. A care‐ and case‐management affected caregiving per se as well as the patient's and family caregiver's well‐being. Important aspects contributing to these findings were a continuous relationship, training and expertise of the care‐ and case‐managers. Establishing networks between the patients, family caregivers, care‐ and case‐managers and healthcare providers were key components as well as a good explanation about RubiN itself for family caregivers. Therefore, a community‐based care‐ and case‐management can play an important role in detecting, facilitating and preventing family caregiver burden. [ABSTRACT FROM AUTHOR]

In Germany, most care dependent people are looked after by family members at home. Professional support can help ease the burden of caring relatives and stabilise home care. Ideally, care then is provided through the co‐production of formal and informal caregivers. This article analyses how care dependent people and their family caregivers integrate professional support into their care arrangements. An analysis was conducted using data collected for a qualitative study evaluating integrated local care centres in North‐Rhine‐Westphalia, Germany. The study is based on episodic interviews with users of these care centres and their family caregivers (N = 26). During the analysis, three interpretive and practice patterns relating to co‐production of care were identified. These patterns reveal how the interviewees deal with (increasing) needs for assistance and care while incorporating professional care into their lives. The patterns help differentiate whether the interviewees (a) use developed care skills to contribute actively to the co‐production with their layman knowledge, or (b) seek relief of their care responsibilities and withdraw temporarily from the direct sphere of care applying freed capacities to organise family daily life, or (c) use the services of the care centres to meet with other older people and to develop spaces for mutual help and co‐production. The interpretive and practice patterns thus differ in the extent to which care users and family caregivers continue to play an 'active role' in the care process and contribute their own knowledge, ideas, expectations and particular care activities. In order to achieve a functioning co‐production, professionals face the challenge of understanding these patterns that have been established over many years and of taking them into account appropriately. [ABSTRACT FROM AUTHOR]