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Decentralized clinical trials (DCTs) provide the opportunity to bring interventional studies closer to participants in their homes or a suitable location closer to prospective participants, thus increasing participants' diversity, accrual, retention, health care, and research access. However, little is known about the burden of caring for cancer patients participating in DCTs. This article describes how DCTs might affect the caregivers of cancer patients. The points discussed include how technological challenges for those without adequate digital literacy can overburden participants and their caregivers at home, as well as managing and optimizing research logistics and safe handling of samples. In addition, the shift in labor from the study personnel to the participants and their caregivers in a bid to complete several study procedures on their own can increase the care burden, especially if not well incentivized. Therefore, it is important to accumulate evidence on ways to optimize DCTs, especially in the home environment, without increasing the burden on caregivers, who will be an integral part of the study team and support the research at home., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The European policy emphasis on providing informal care at home causes caregivers and home care professionals having more contact with each other, which makes it important for them to find satisfying ways to share care. Findings from the literature show that sharing care between caregivers and professionals can be improved. This study therefore examines to what degree and why caregivers' judgements on sharing care with home care professionals vary. To improve our understanding of social inequities in caregiving experiences, the study adopts an intersectional perspective. We investigate how personal and situational characteristics attached to care judgements are interwoven. Using data of the Netherlands Institute for Social Research, we conducted bivariate and multivariate linear regression analysis (N = 292). We combined four survey questions into a 1-4 scale on 'caregiver judgement' (α = 0.69) and used caregivers' personal (such as gender and health status) and situational characteristics (such as the care recipient's impairment and type of care) as determinants to discern whether these are related to the caregivers' judgement. Using a multiplicative approach, we also examined the relationship between mutually constituting factors of the caregivers' judgement. Adjusted for all characteristics, caregivers who provide care to a parent or child with a mental impairment and those aged between 45 and 64 years or with a paid job providing care to someone with a mental impairment are likely to judge sharing care more negatively. Also, men providing care with help from other caregivers and caregivers providing care because they like to do so who provide domestic help seem more likely to be less satisfied about sharing care. This knowledge is vital for professionals providing home care, because it clarifies differences in caregivers' experiences and hence induce knowledge how to pay special attention to those who may experience less satisfaction while sharing care., (© 2019 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families' preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of 'sheer exhaustion' that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon 'being too tired' must be understood in relation to transition processes and changes in lifestyle having an affect upon cultural values in relation to filial piety. Because, at the same time the changes on cultural values might not change accordingly among the elderly who are the ones moving into residential care, resulting in them quite often being left out of the actual decision.

India is currently experiencing a demographic and epidemiological transition characterized by an aging population and an increase in chronic diseases, resulting in a greater demand for home healthcare services. Despite the critical nature and expansion of this area, home healthcare delivery in India remains under-researched. There is a dearth of information about the services, providers and organizations that offer services at home. There are various concerns in the provision of home healthcare services. These relate to accessibility and availability, information on providers, regulatory issues, standards of care, costs, safety concerns, and grievance redressal mechanisms for providers and users, which are among the topics discussed in this article. The article concludes that there is a need to recognize the "home" as a place for providing healthcare and as a "workplace" of care providers, develop standardized processes and guidelines for delivering care for different conditions at home, adopt standard human resource practices in deployment of care providers, bring transparency in the calculation of the cost of services and regulation of costs, and establish grievance redressal mechanisms for users, providers, and organizations. Further research is recommended on aspects such as user and provider perspective, training and supervision of providers, and financing, accreditation, and quality of services. [ABSTRACT FROM AUTHOR]

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Background: This paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes. Methods: Systematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols. Results: Of 131 publications evaluated, 56 were assessed to be of 'high' quality, 62 of 'medium' quality and 13 of 'low' quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support. Conclusions: In many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services. [ABSTRACT FROM AUTHOR]

Background Juvenile idiopathic arthritis (JIA) can lead to serious disability in children and adolescents, requiring intensive home care usually provided by parents .These parents must also cope with physical, familial, social and financial constraints. The aim of this study is to evaluate the positive and negative impacts of caregiving on parents to children with JIA, and identify diseases-related variables that affect these outcomes. Methods Cross-sectional study including 47 patients diagnosed with JIA defined by the International League of association for Rheumatology (ILAR) 2001 classification. Socio-demographic, clinical and biological data related to patient and disease were collected. Positive and negative effects of caregiving on parents of children with JIA were assessed via a validated instrument; the Caregiver Reaction Assessment (CRA).The CRA assesses parent's selfesteem, financial problems, health problems, disrupted schedule and lack of family support. All parents completed the CRA questionnaire. A statistical analysis was conducted to determine the influence of disease-related variables on caregivers. Results Forty-seven patients were included with 40.4% female. The average patient age was 11 years, and a mean patient body mass index (BMI) was 18. Forty patients were in school. Median disease duration of JIA was 4 years. The most frequent arthritis subtype was persistent oligoarthritis in 12-patients. Nearly 15% had extra-articular manifestations most frequently ocular involvement (6.4%). Median of global Visual analogic scale (VAS) was 20 and median Child health assessment questionnaire (CHAQ) was 0. The primary caregiver was the mother for all patients. Mean maternal age was 38 years, 42% of mothers were illiterate, and nearly all (95%) were without employment. The mean values of different dimensions of the CRA were respectively: self-esteem 3.5, financial problems 3.7, health problem 2.4, disrupted schedule 3.6 and familial support 2.9. Disrupted schedule of parents was correlated with disease severity assessed by physician VAS (p = 0.02). Financial problems of parents were significantly associated with disease duration (p = 0.04). There was no significant association between the type of JIA, activity or severity of the disease and other dimensions of the CRA. Conclusion This study suggests that the management of children with JIA has a high negative impact among caregiving parents, represented mainly by the disruption of their activities, the lack of family support, financial problems and health problems. However, caregiving often also improves caregiver's self-esteem (feeling of gratification to be helping). [ABSTRACT FROM AUTHOR]

An increase in the ageing UK population is leading to new ways of looking at how we deliver health and social care services in the UK. The use of assisted living technology (ALT) and telecare is already playing a part in these new models of care. Yet despite the current advances in the range of technology and networking capabilities in the home, ALT and telecare solutions have not been taken up as eagerly as might have been anticipated. The study reported here used scenario-based focus groups with a wide variety of stakeholders in home care to identify the existing barriers to the successful uptake of ALTs and telecare in Scotland. Six focus group sessions were conducted with individual stakeholder groups (social care workers, policy makers, telecare installation technicians, older users, informal carers) and five conducted with mixed stakeholder groups. The focus groups used the same home care scenario to identify and categorise the different perceptions, attitudes, and expectations of the various stakeholders when discussing telecare implementation for a fictitious older couple. The emerging themes from the focus groups were analysed and categorised according to the Framework Analysis approach. We present a synthesised list of the current barriers to the uptake of ALTs and telecare - and discuss how each of these barriers might be overcome. If these barriers are addressed, we believe telehealthcare technologies will be better designed, more usable, easier to prescribe effectively, more acceptable to more users in more contexts, and ultimately more common place in homes throughout the UK. [ABSTRACT FROM AUTHOR]