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Value of care

The following resources examine the notional value of care provided by carers, and the value attributed to caring (monetary and other).

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

Dietary treatment of Crohn's disease: perceptions of families with children treated by exclusive enteral nutrition, a questionnaire survey

Background: Diet is strongly associated with the aetiology of Crohn's Disease (CD) and exclusive enteral nutrition (EEN) is the primary induction treatment in paediatric CD. This study explored opinions around the use of EEN and alternative novel, solid food-based diets (SFDs) expressed by paediatric patients with CD, previously treated with EEN and their parents.

Methods: This anonymous questionnaire surveyed families of CD patients treated with EEN over 1 year. Two questionnaire forms were completed; one asking the patients' opinions and another referring to their main carer. This questionnaire explored participants' demographic characteristics; acceptability of a repeat EEN course to treat a future flare (EEN repeat); their opinion on how difficult EEN would be compared to an example SFD; and their intention to participate in a future clinical trial assessing the therapeutic efficacy of an SFD in CD.

Results: Forty-one families of CD patients were approached with 29 sending replies (71%). Most of our participants were positive on completing another EEN course, however the majority would choose an SFD alternative (Patients:66, Parents:72%). Both patients and their parents rated EEN to be more difficult to adhere to compared to an example SFD (p < 0.05), and their ratings were strongly correlated (EEN:r = 0.83, SFD:r = 0.75, p < 0.001). The majority of our respondents would agree to participate in a clinical trial assessing an SFD's effectiveness (Patients:79, Parents:72%) for the management of active CD.

Conclusions: While patients with CD and their families would accept an EEN repeat, the majority would prefer an SFD alternative. CD families surveyed are supportive of the development of solid food-based dietary treatments.

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Relationships between caregiver decisions about communication approach and language outcomes for children using cochlear implants*

With regard to parents making communication approach decisions for their children with hearing loss, Crowe et al. (2014) suggested that key themes were: feasibility; sources of information; child characteristics; and, future opportunities. For children using cochlear implants (CI/s), the present study aimed to understand parental preferences regarding communication, the sources of information they used, and child language outcomes. Demographic and language data were available for 162 children using CI/s (mean age at CI 3.74 years; SD 3.83). Standard scores (SS) were reported for the PPVT-3/ PPVT-4. To enable inclusion of a more diverse group of children (including those with additional needs) data from the PPVT, PLS, CDI and RI-TLS were coded; receptive and expressive Categories of Linguistic Performance (CLIP; Dettman et al., 2017). Caregivers completed a one-off questionnaire; Parental Views about Communication (PVaC). Chi-square analyses explored the distribution and strength of caregiver responses to PVaC questions about the use of spoken language/Auslan within a Bilingual-Bicultural approach. Correlations between child/family characteristics, child language and parental preferences were explored. Parents’ decisions regarding communication with their children using CI/s were driven by multiple sources of information and influence. Changes in a child’s communication approach before and after hearing diagnosis and, following CIs were unrelated to child language outcomes or family characteristics but were influenced to an extent by parent values and child preferences. Of importance to the field, parents/caregivers require unbiased support from professionals to learn about their needs and to seek information (Young, 2002). Consistent with Watson et al. (2007) child preferences were influential on parental decision making; the present study demonstrated that child language and cognitive skills were also influential.

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Difficulties and factors influencing purchase decision. The perspective of families with children with autism spectrum disorders on a gluten-free and casein-free diet. Preliminary study

Background: Gluten-free and casein-free diet is frequently used in the support of therapy of children with autism spectrum disorders. In addition, many parents restrict the consumption of simple sugars for their children.

Objective: The aim of this paper was to understand factors influencing purchase decision in case of family with children with autism spectrum disorders on gluten-free and/or casein-free and/or sugar-free diet and the difficulties associated with this type of nutrition.

Material and Methods: The study covered a group of 40 families with children with autism spectrum disorders (32 boys and 8 girls) aged 3 to 10 years. Data were collected with questionnaire included questions concerning overall characteristics of caregivers, availability of foods used in the special diet, factors affecting decision on the purchase of products, difficulties in maintaining the child nutrition method.

Results: The factors having strongest impact on parents' decisions on the purchase of products were product composition, presence of a certificate confirming the absence of gluten and/or milk and taste values. Exclusion diet constituted a considerable obstruction for traveling, social gatherings and resulted in conflicts with family and the environment. The limited range of healthy gluten-free, casein-free and sugar-free foods, low taste quality and unsatisfactory quality impeded purchase and preparation of varied meals.

Conclusions: The surveyed parents were aware consumers, paying attention primarily to product composition and safety. The respondents were looking for healthy, organic and nutritionally valuable products with low sugar content. Further development of the gluten/casein/ sugar free products market may considerably improve certain aspects of family's life with children with autism spectrum disorders. 

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Patient, family and productivity costs of end-stage renal disease in the Netherlands; exposing non-healthcare related costs

Background: Healthcare costs related to ESRD are well-described, but broader societal costs of ESRD are less known. Objectives: This study aimed to estimate patient and family costs, including informal care costs and out-of-pocket costs, and costs due to productivity loss related to ESRD, for patients receiving dialysis and living with a kidney transplant, using a bottom-up approach. Methods: A total of 655 patients were asked to complete a digital questionnaire consisting of two standardised instruments (iMCQ and iPCQ) from November 2016 through January 2017. We applied a retrospective bottom-up cost estimation by combining data from the questionnaire with unit prices from the Dutch costing manual. Results: Our study sample consisted of 230 patients, of which 165 were kidney transplant recipients and 65 received dialysis. The total annual non-healthcare related costs were estimated at €8284 (SD: €14,266) for transplant recipients and €23,488 (SD: €39,434) for dialysis patients. Costs due to productivity loss contributed most to the total non-healthcare costs (66% for transplant recipients and 65% for dialysis patients), followed by informal care costs (26% resp. 29%) and out-of-pocket costs, such as medication and travel expenses (8% resp. 6%). Conclusion: By exposing patient, family and productivity costs, our study revealed that dialysis and transplantation are not only costly within the healthcare system, but also incur high non-healthcare costs (18–23% resp. 35% of the total societal costs). It is important to reveal these types of non-healthcare costs in order to understand the full burden of ESRD for society and the potential impact of new therapies. 

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Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study

Background: Inclusive universal health coverage requires access to quality health care without financial barriers. Receipt of palliative care after advanced cancer diagnosis might reduce household poverty, but evidence from low-income and middle-income settings is sparse. Methods: In this prospective study, the primary objective was to investigate total household costs of cancer-related health care after a diagnosis of advanced cancer, with and without the receipt of palliative care. Households comprising patients and their unpaid family caregiver were recruited into a cohort study at Queen Elizabeth Central Hospital in Malawi, between Jan 16 and July 31, 2019. Costs of cancer-related health-care use (including palliative care) and health-related quality-of-life were recorded over 6 months. Regression analysis explored associations between receipt of palliative care and total household costs on health care as a proportion of household income. Catastrophic costs, defined as 20% or more of total household income, sale of assets and loans taken out (dissaving), and their association with palliative care were computed. Findings: We recruited 150 households. At 6 months, data from 89 (59%) of 150 households were available, comprising 89 patients (median age 50 years, 79% female) and 64 caregivers (median age 40 years, 73% female). Patients in 55 (37%) of the 150 households died and six (4%) were lost to follow-up. 19 (21%) of 89 households received palliative care. Catastrophic costs were experienced by nine (47%) of 19 households who received palliative care versus 48 (69%) of 70 households who did not (relative risk 0·69, 95% CI 0·42 to 1·14, p=0·109). Palliative care was associated with substantially reduced dissaving (median US$11, IQR 0 to 30 vs $34, 14 to 75; p=0·005). The mean difference in total household costs on cancer-related health care with receipt of palliative care was −36% (95% CI −94 to 594; p=0·707). Interpretation: Vulnerable households in low-income countries are subject to catastrophic health-related costs following a diagnosis of advanced cancer. Palliative care might result in reduced dissaving in these households. Further consideration of the economic benefits of palliative care is justified. Funding: Wellcome Trust; National Institute for Health Research; and EMMS International. 

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Male family carers' experiences of formal support – a meta‐ethnography

Background: Men represent a growing proportion of unpaid family carers across Europe. Comparative studies have proposed male carers experience their caring role differently to females; men are less likely to avail of formal support services than women. Social ideas around masculinity have been linked to the help‐seeking behaviours of male carers, as well as men's attitudes around accessing formal support. More understanding about this role from the perspective of male carers is required. Methods: The study followed a meta‐ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the selected studies was evaluated using the Mc Master checklist. Using NVivo 12 software, primary data were analysed and themes throughout the papers were identified. Results were synthesised as a meta‐ethnography that retained direct quotes from the studies. Results: Two themes and five sub‐themes were developed from the data. The first theme was ‘Men's experiences of formal support’ which contained sub‐themes ‘Reluctance to step back’, ‘A space to share emotions’ and ‘Education diminishes burden’. The second theme was ‘Coping without Formal Support’ with sub‐themes ‘Satisfied without help’ and ‘Duty prevents help seeking’. Conclusions: Fear of perceived failure and a loss of control in the caring relationship were key factors in men's low trust and dissatisfaction with available services. To engage more male carers, formal service providers should acknowledge men's wish to be seen as competent in the care role as well as their desire to stay involved in decision‐making around care for their family member. Support services that were collaborative, education‐based and gender‐sensitive were favoured by male carers.

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Income-related inequalities in informal care: Evidence from the longitudinal healthy longevity survey in China

Objectives: This report aims to examine income-related inequalities in informal care among older people with functional limitations in China. Methods: Data are drawn from the 2005, 2008, 2011, and 2014 waves of the Chinese Longitudinal Healthy Longevity Survey. Erreygers concentration index, concentration index, and horizontal inequity index are used to examine inequalities in informal care. A random effects model is then used to investigate the relationship between household income and informal care. Results: There is no significant association between household income and the probability of receiving informal care. However, we observed a significant positive association between household income and hours of informal care received, indicating that those with higher household income receive more hours of informal care compared to those with lower household income. The degree of this inequality increases as the number of functional limitations increases. Discussion: Lower household income is associated with lower intensity of informal care received, particularly for older people with more functional limitations. Policies are required to support low-income older people with more functional limitations. 

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How does she do it all? Effects of education on reconciliation of employment and informal caregiving among Austrian women

Background: The introduction of reforms to the Austrian pension system in the early 2000s resulted in a significant increase in the employment rate of older working age women. This increase was highly differentiated along education groups, with increases in employment rates concentrated among those with secondary and tertiary education. Methods: Logistic regression analysis is applied to SHARE data from waves 1 and 6, to determine whether the increase in labour market participation of women aged 50+ in Austria has affected informal caregiving across education lines. Results: Unlike their secondary and tertiary educated counterparts, lower educated women were more likely to provide high intensity care in 2015 than in 2004, resulting in an education gradient that was not present before. In comparison, the overall probability to provide care has not changed significantly, irrespective of older women's education. Other possible adjustments were also explored, such as decreased participation in social activities or higher care burden. There is also limited evidence of compensation by increased informal care provision among men. Conclusions: Both employment and informal care provision have become more segmented in Austria in the wake of the pension reforms of 2004.

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Health-Related and Economic Burden Among Family Caregivers of Patients with Acute Myeloid Leukemia or Hematological Malignancies

Background: Acute myeloid leukemia (AML) is associated with lower survival and greater unmet need compared with some other hematologic malignancies (HMs). Despite differences in acuteness between AML and other HMs, the burden of family caregivers (FCs) of patients with these malignancies offer similar patient experiences.Methods:  A targeted literature review was conducted to explore FC burden of patients with AML and HM with and without hematopoietic stem cell transplant (HSCT). Instruments to measure and interventions to address FC burden were identified. Methods: Studies on economic burden and compromised health-related quality of life (HRQoL) associated with FC burden, family affairs, and childcare from 1 January 2010 to 30 June 2019 were identified through database and hand searches. Published English articles on randomized controlled trials or standardized qualitative or quantitative observational studies were included. FCs were those in close familial proximity to the patient (i.e., spouse, parents, children, relatives, other family members, significant others). Results: Seventy-one publications were identified (AML, n = 3; HM, n = 29; HSCT, n = 39). Predominant burden categories included humanistic (n = 33), economic (n = 17), and interventions (n = 22); one study was classified as humanistic and economic. FCs lack sufficient resources to manage stressors and experience negative psychological, behavioral, and physiological effects. FCs of patients with HMs reported post-traumatic stress disorder, significant sleep problems, moderate-to-poor HRQoL, and negative impacts on family relationships. Instruments designed to measure caregiver burden were generic and symptom-specific. Educational, expressional, and self-adjustment interventions were used to improve FC burden. Conclusion: Findings indicate a need for additional research, public health approaches to support FCs, and effective interventions to address FC burden. Minimizing FC burden and improving quality of life may reduce the overall healthcare service use and allow FCs to more effectively fulfill caregiver tasks. Support systems to alleviate caregiver burden may create reinforced integrators, thus positively affecting quality of life and possibly the outcomes of patients. 

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Formal and informal care work

Care work is an umbrella term for many services and activities, both formal and informal, that provide help and advice, healing and nursing, education and training. Such work on and with people, the productivity of which cannot readily be increased, could in future be a significant core area for all human work in post-growth societies. Whether this work will be performed solely through paid services, or whether a mix of care activities will emerge in the course of societal transformation, based on a newly defined relationship between formal and informal care work and a new division of roles between the sexes, is an open question.

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Psychological well-being and family distress of Italian caregivers during the COVID-19 outbreak

Objecives: The present study aimed to investigate the personal well-being and family distress of Italian caregivers during the lockdown. Methods: Five hundred sixty-five family caregivers and 638 age- and sex-matched noncaregivers completed a web-based survey. The following scales were administered to all participants: General Health Questionnaire-12 items (GHQ-12), Insomnia Severity Index (ISI), Brief Resilient Coping Scale (BRCS), and Family Distress Index (FDI). Caregivers were also asked to provide information about their family members with disabilities. Results: Individual and family distress, as well as insomnia, were significantly higher in caregivers than controls. Contrariwise, caregivers reported lower resilience levels. Multiple linear regression showed that distress was higher in caregivers living in Central and Southern Italy. Individual well-being was negatively predicted by low independence measured by the activities of daily living (ADL). Family distress was higher in households of psychiatric patients. Finally, low resilience levels appeared as the strongest predictors of both individual and family distress. Conclusions: The lockdown caused severe distress among caregivers and families of people with disabilities. Support networks for people with disabilities and their families are fundamental to prevent severe consequences from a psychological, social, and economical point of view.

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Family Caregiver Perspectives on Benefits and Challenges of Caring for Older Adults With Paid Caregivers

Background: Many older adults receive help from both family caregivers and home care workers. We aimed to understand family caregivers’ perspectives on home care workers. Methods: This qualitative study took place at an academic medical center in New York, N.Y. We interviewed family caregivers of community-dwelling older adults about their experiences with home care workers. We analyzed transcripts thematically. Results: We interviewed 17 family caregivers and identified four major themes: (a) home care workers provide functional and emotional support; (b) home care is logistically challenging; (c) finding the right fit between home care workers, older adults, and families is essential; and (d) home care workers and family caregivers coordinate care well beyond the initiation of home care. Conclusion: Despite its logistical challenges, home care benefits patients and family caregivers. Given the growing prevalence of caregiving, clinicians and family caregivers might benefit from training and support about working with home care workers. 

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Supporting Informal Caregivers of People With Dementia in Cost-Effective Ways: A Systematic Review and Meta-Analysis

Background and Objectives: Caring for persons with dementia is a heavy burden for informal caregivers. This study aimed to appraise the economic evidence of interventions supporting informal caregivers of people with dementia. Methods: Literature was searched, and trial-based studies evaluating the costs and effects of interventions supporting informal caregivers of people with dementia were included. Cost data were analyzed from both healthcare and societal perspectives. Random-effects models were used to synthesize cost and effect data, based on mean differences (MDs) or standardized MDs. Results: Of 33 eligible studies identified from 48 588 records, 14 (42.4%) showed net savings in total cost regardless of analytical perspectives. Among 22 studies included in meta-analyses, caregiver-focused psychosocial interventions showed improvements in caregivers’ psychological health (n = 4; standardized MD 0.240; 95% confidence interval 0.094-0.387); nevertheless, the increases in societal cost were significant (n = 5; MD 3144; 95% confidence interval 922-5366). Psychological intervention and behavioral management engaging patient-caregiver dyads showed positive effects on caregivers’ subjective burden, also with increases in total cost. Subgroup analyses indicated that the inclusion of different intervention components, the caregiver characteristics, and the follow-up periods could affect the costs and effects of interventions supporting informal caregivers. Conclusions: Psychosocial interventions directed at informal caregivers and dyad-based psychological and behavioral interventions are effective but also expensive. The use of these interventions depends on the society's willingness to pay. More comprehensive economic evidence of interventions supporting informal caregivers is required, and the design of intervention should focus more on different intervention components, characteristics of patients and caregivers, and healthcare systems. 

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Every Cloud Has a Silver Lining: Exploring Experiential Knowledge and Assets of Family Caregivers

Background: Family caregivers of patients with chronic conditions often subject themselves to drastic life changes. The quality of life of the caregivers often decreases noticeably at the beginning of the caregiving trajectory, because they typically reorient their lives to focus on the patient's health status. As a result, previous studies viewed caregivers primarily as people who need help and focused on how technologies can support them. However, in our study, we found that caregivers are also capable of developing their own experiential knowledge and strategies, which have been invisible in previous caregiver studies. Methods: By conducting in-home interviews with fourteen family caregivers, we present the types of new knowledge and coping strategies family caregivers have developed from their lived experiences during everyday caregiving tasks. Findings: These include 1) establishing new mindsets, 2) developing mindful activities, 3) building relationship management strategies, and 4) sharing experiences with people in their own networks. Conclusions: Based on our findings, we call for an asset-based approach that will help researchers notice the capabilities of caregivers. This approach could enable researchers to be more reflexive in the incorporation of caregivers' devalued knowledge within their system designs. 

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The Challenges of Measuring Informal Care Time: A Review of the Literature

Background: Economic evaluations increasingly include the value of informal care, for example, in terms of caregiver health effects or time costs. If an economic evaluation uses caregiving time costs, appropriate measurement of caregiving time is an important first step prior to its valuation. There is no comprehensive overview of the measurement challenges for caregiving time. Methods: In this literature review, we searched Medline, Embase, Econlit and Scopus to identify measurement issues and associated studies which reported informal care time that addressed them. Results: The search identified 27 studies that addressed nine measurement issues. There is limited evidence on how to address these issues, although some have received relatively more attention, including incremental time (considered in 16 studies), time measurement method comparisons (six studies) and the inclusion of intangible tasks (four studies). Non-response (considered in only one study) and carer and recipient identification (two studies) were the most wide-reaching measurement concerns, as these determine who is identified as carers. There was no evidence on the consequences of these measurement challenges in terms of impacts on cost-effectiveness ratios and on the total cost of health conditions, which would be a crucial next step. Conclusions: Future research on these issues should consider a range of different settings, as informal care is highly heterogeneous. The measurement of informal care is key for its inclusion in economic evaluations but there is little consensus on how to appropriately measure this type of care.

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Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies

Introduction/Aims: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. Methods: Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011–2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. Results: Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. Conclusions: Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation. 

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Estimating an exchange-rate between care-related and health-related quality of life outcomes for economic evaluation: An application of the wellbeing valuation method

Background: Quality of life outcomes for family carers and patients may be measured in different ways within the same economic evaluation. Methods: We used the wellbeing valuation method to calculate "exchange rates" between care-related outcomes (the Carer Experience Scale and CarerQoL-7D) and health-related (the EQ-5D-5L) outcomes. Data on quality of life outcomes were collected through a postal quality of life survey in the UK. A random effects model was used to estimate carers' wellbeing as a function of their EQ-5D-5L, Carer Experience Scale (or CarerQoL-7D) and a set of control variables. Results: When life satisfaction was used as the measure of wellbeing, a one-point gain in the Carer Experience Scale (0-100 scale) was equivalent (in wellbeing terms) to a 0.014 gain in EQ-5D-5L value; and a one point gain in the CarerQoL-7D (0-100 scale) was equivalent to a 0.033 gain in EQ-5D-5L. The exchange rate values were reduced when capability was used as the measure of wellbeing. Conclusions: The exchange rates estimated in this study offer a means to place carer and patient outcomes, measured via different quality of life instruments, on a common scale, although there are important issues to consider in operationalising the technique. 

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Does Unpaid Caregiving Erode Working Hours Among Middle-Aged Chinese Adults?

Background: Middle-aged adults are commonly confronted with the burden of paid work and multiple caregiving roles. Objectives: This paper examines the relationship between weekly hours of unpaid caregiving and hours of work using data from the baseline survey of the China Health and Retirement Longitudinal Study. Methods: The analysis was conducted on a nationally representative sample of 3645 working-age Chinese adults aged 45–60 years who were not farming and had a young grandchild and/or a parent/parent-in-law. For women and men separately, we combined the use of a Heckman selection procedure and instrumental variables to estimate the relationship between weekly caregiving hours and hours of work. A caregiving threshold was also identified for women and men separately to allow for the testing of a kink and/or a discontinuity in this relationship. Results: We found that for women, their working hours were initially unrelated to hours of caregiving before the threshold of 72 caregiving hours per week; then, their working hours experienced an almost two-fold increase at the caregiving threshold before falling by 2.02 percent for each additional hour of caregiving beyond the threshold. For men, their hours of work fell by 2.74 percent for each hourly increment in caregiving. Although a caregiving threshold of 112 h was identified for men, there was insufficient evidence for a statistically significant kink or discontinuity in this relationship. Conclusions: These findings provide support for a range of fiscal and human resource policies that target employed family caregivers in order to advance their well-being while also maintaining their work productivity.

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Cost analysis of informal care: estimates from a national cross-sectional survey in Sweden

Background: Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce. Objective: This study contributes to the existing evidence on the costs of informal care by estimating the direct and indirect costs to caregivers using a purposive national household survey from Sweden. Methods: Adopting a bottom-up, prevalence approach, the direct and indirect costs are estimated using the survey data and the value of working time and leisure time from existing sources. Results: The results suggest that around 15% of the adult population of Sweden provide informal care and that such care costs around SEK 152 billion per year (around 3% of GDP; USD 16,3 billion; EUR 14,5 billion), or SEK 128000 per caregiver. Around 55% of costs are in the form of income loss to caregivers. The largest cost items are reduced work hours and direct costs of providing informal care. Replacing informal caregivers with professional care providers would be costly at around SEK 193,6 billion per year. Conclusions: Findings indicate that, even in a country with a relatively generous welfare system, significant resources are allocated toward providing informal care. The costing analysis suggests that effective support initiatives to ease the burden of informal caregivers may be cost-effective. 

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Codesigning a supportive online resource for Australian cancer carers: A thematic analysis of informal carers' and healthcare professionals' perspectives about carers' responsibilities and content needs

Objective: To gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia. Methods: Utilising a previously tested codesign process, informal carers' experiences and perspectives, including those of healthcare professionals', were examined via focus groups and/or interviews. Data were analysed via thematic analysis. Participants Rural (n=9) and urban (n=11) carers', and healthcare professionals' (n=8) perspectives were collected. Carers participated in a focus group (n=9) or telephone interview (n=11). Healthcare professionals completed an interview (n=6) or online survey (n=2). Results: Rural and urban carers typically felt ill prepared for their multitudinal caregiving responsibilities. Supporting patient-to-healthcare professional liaisons could especially challenge. Carers' biopsychosocial and fiscal strains were affected by patients' hardships and available informal supports. Rural carers described greater social support than urban carers. Both rural and urban carers also described discontentment related to a carer neglecting healthcare system. Both carers and healthcare professionals endorsed the need for a user-friendly, carer-specific website encompassing practical information and resources, peer-driven advice and evidence-based illness information, tailored to the Australian context. Conclusions: Carers and healthcare professionals recognise the pressing need for an Australian, cancer carer-specific online resource. Findings will inform the next phase, where a resource will be designed, developed and tested. 

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Humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia

Background: Chronic obstructive pulmonary disease (COPD) is associated with substantial humanistic and socioeconomic burden on patients and their caregivers. COPD is expected to be 7th leading cause of disease burden till 2030. Objectives: The objective of the current study was to assess the humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia. The burden includes the cost of management of COPD, QOL of COPD patients and their caregivers, work productivity and activity impairment of COPD patients and their caregivers due to COPD. Methods: One hundred and fifty COPD patients and their caregivers from the chest clinic of Penang Hospital were included in the study from August 2018 to August 2019. Caregiving cost was estimated using the replacement cost approach, while humanistic and social burden was assessed with the help of health status questionnaires. Results: Overall, 64.66% and 7.1% of COPD patients reported to depend on informal caregivers and professional caregivers respectively. COPD patients reported dyspnoea score as 2.31 (1.31), EQ-5D-5L utility index 0.57 (0.23), CCI 2.3 (1.4), SGRQ-C 49.23 (18.61), productivity loss 31.87% and activity impairment 17.42%. Caregivers reported dyspnoea score as 0.72 (0.14), EQ-5D-5L utility index 0.57 (0.23), productivity loss 7.19% and social activity limitation as 21.63% due to taking care of COPD patients. Conclusions: In addition to the huge direct cost of management, COPD is also associated with substantial burden on society in terms of compromised quality of life, reduced efficiency at the workplace, activity impairment and caregiver burden. 

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Money transfers within caring dyads: some open research questions

By its definition, care is not (financially) reimbursed. However, care recipients often provide material and/or financial support to their carers, which may be related to a range of psychological and social outcomes, such as the financial fragility of care recipients, changes in the quality of relationships and care, or psychological burden. In this article, I provide a brief overview of the extant knowledge on the topic and discuss some of the research questions that should be addressed in the future, both through analyses of longitudinal data and through focused research projects, linking them to the aforementioned outcomes and overall well-being of the carers.

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Total cost of care increases significantly from early to mild Alzheimer's disease: 5-year ALSOVA follow-up

Background: We studied the costs of formal and informal care in relation to Alzheimer's disease (AD) progression. Methods: 231 persons with AD with a family caregiver were followed up for 5 years. The Clinical Dementia Rating Scale-Sum of Boxes (CDR-SB) was used to measure AD progression. Health and social care unit costs were used for formal care costs. An opportunity cost method for lost leisure time was applied to analyse the cost of informal care. Results: Total cost of care in early stage AD (CDR-SB <= 4) was 16,448(sic) (95% CI 13,722-19,716) annually. In mild (CDR-SB 4.5-9), moderate (CDR-SB 9.5-15.5) and severe (CDR-SB >= 16) AD, the total costs were 2.3, 3.4 and 4.4 times higher, respectively. A one-unit increase in CDR-SB increased the total, formal and informal costs by 15, 11 and 18%, respectively. Conclusions: Compared to early AD, the costs of total, formal and informal care are remarkably higher already in mild AD. This finding emphasises early diagnosis, interventions and family support for persons with AD and their caregivers.

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Valuation of Informal Care Provided to People Living With Dementia: A Systematic Literature Review

Objectives: This study aimed to identify the methods used to determine the value of informal care provided to people living with dementia and to estimate the average hourly unit cost by valuation method. Methods: A literature search in MEDLINE Complete, CINAHL, PsycINFO, EconLit, EMBASE and NHS Economic Evaluation Database was undertaken. Following the screening of title, abstract, and full text, characteristics of eligible studies were extracted systematically and analyzed descriptively. The corresponding hourly cost estimates were converted into 2018 US dollars based on purchasing power parities for gross domestic product. Results: A total number of 111 articles were included in this review from 3106 post-deduplication records. Three main valuation methodologies were identified: the replacement cost method (n = 50), the opportunity cost approach (n = 36), and the stated preference method based on willingness to pay (n = 3), with 16 studies using multiple methods and 6 studies not specifying the valuation method. The amount of informal care increased as the condition of dementia progressed, which was reflected in the cost of informal care. The average hourly unit cost used to value informal care was US $16.78 (SD = US $12.11). Although the unit cost was approximately US $15 per hour when using the opportunity cost method and US $14 when using the stated preference method, the highest unit cost was obtained when using the replacement cost method (US $18.37, SD = US $13.12). Conclusions: Although costs of informal care should be considered when undertaking an economic evaluation or estimating the overall costs of dementia from a policy and priority-setting perspective, further research into applying consistent approaches to valuation is warranted. 

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The impact of the COVID-19 pandemic on the third sector and carers in the UK

The COVID-19 outbreak that emerged at the end of 2019 has had a significant and ongoing global impact. This article discusses the impact on the third sector in the UK and the carers who use third sector services.

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The determinants of caregiver use and its costs for elderly inpatients in Korea: a study applying Andersen’s behavioral model of health care utilization and replacement cost method

Objectives: The average annual healthcare expenditure among elderly patients in Korea is increasing rapidly in indirect healthcare sectors, requiring an understanding of factors related to the use of both formal and informal caregivers. Objectives: This study analyzed the characteristics of caregiver use and caregiving costs among elderly patients hospitalized due to acute illness or exacerbation of chronic diseases. Methods: A total of 819 study participants were selected from the 2017 Korea Health Panel Study Data. Replacement costing methods were applied to estimate the hours of informal caregiver assistance received by elderly inpatients. Elderly inpatients’ predisposing, enabling, and need factors were studied to identify the relationship between caregiver uses, based on Andersen’s behavior model. A two-part model was applied to analyze the factors related to care receipt and to estimate the incremental costs of care. Results: Elderly inpatients who used tertiary hospitals (OR: 2.77, p-value < 0.00) and received financial support (OR: 2.68, p-value < 0.00) were more likely to receive support from a caregiver. However, elderly inpatients living alone were lesser to do so (OR: 0.49, p-value < 0.00). Elderly inpatients with Medicaid insurance (β:0.54, p-value = 0.02) or financial aid (β: 0.64, p-value < 0.00) had a statistically positive association with spending more on caregiving costs. Additionally, financial support receivers had incremental costs of $627 in caregiving costs than nonreceivers. Conclusions: This study presented significant socioenvironmental characteristics of formal and informal caregiver use and the related expenditures. Healthcare management plans that encompass multiple social levels should be implemented to ease the caregiver burden. 

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Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of Resource Utilization in Dementia (RUD)

Background: Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40–75% of the total dementia cost exceeding formal care time and medical costs. Objective: To conduct a systematic review to evaluate the methodological quality and factors associated with high informal care hours per month that increase societal costs, and to identify what type of interventions may alleviate the entire burden of informal and formal caregiving. Methods: The systematic review was registered at PROSPERO (15.12.2020). A search in Medline, Embase, PsycINFO, and web of science for observational studies, cost-effectiveness, and cost of illness (COI) analyses on resource utilization in dementia (RUD) was conducted on 1 December 2020. Our inclusion criteria included a requirement that studies had to use the original RUD, RUD-FOCA or RUD lite in terms of hours or days per month, and costs as primary or secondary outcome, OECD countries, within the last 20 years and a sample population comprising persons with dementia (PwD) ≥65 years and their caregivers. We followed the PRISMA, GRADE, PICO guidelines and Drummond criteria to assess the methodology and quality of the studies. Results: Of 307 studies, 26 cross-sectional and 3 longitudinal cohort studies were included in the analyses. Two studies had a randomized controlled trial (RCT) design. The methods and cost categories in each study varied widely. Disease severity, caregiver factors, and behavioural and psychological symptoms of dementia (BPSD) were associated with high informal care hours and societal cost. One RCT found no effect of a non-pharmacological intervention on informal care hours, yet another RCT found a cost-effective impact of an in-home respite care programme reducing informal care burden and costs. Conclusion: The divergent use of the RUD components within included studies encourage more harmonized analyses. There are only two RCTs on RUD, one of which shows a significant treatment effect. Larger sample sizes and longer follow-up periods are required in future RCTs with dedicated focus on cost-enhancing and resource intensive factors such as disease severity and BPSD. Novel interventions must diversify between caregiver and PwD groups. PROSPERO registration: CRD42021226388. 

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Valuing the caregiver: a feasibility study of an acceptance and commitment therapy (ACT) group intervention for dementia caregivers

Purpose: This study aims to investigate the feasibility and acceptability of a new group intervention, using an acceptance and commitment therapy (ACT) approach, developed for dementia caregivers. Preliminary data regarding the effectiveness of the intervention was also collected. Design/methodology/approach: A quasi-experimental design is used involving pre- and post-intervention data from four different intervention sites, along with three-month follow-up data. Data on attendance, attrition and qualitative feedback was also collected as an indication of acceptability. A total of 23 people currently caring for a family member with dementia attended the ACT group intervention for five sessions. Detailed evaluation forms were collected at the end of each group, along with four self-report questionnaires: Zarit Burden Interview, Positive Aspects of Caregiving Scale, Dementia Management Strategies Scale and Experiential Avoidance in Caregiving Questionnaire. Findings: Findings indicate that the group intervention was feasible and acceptable to caregivers, with subjective change reported in understanding of behavioural changes in the care-recipient, ability to handle negative emotions and valued living. These changes were not reflected in the outcome measures, with only one change reaching statistical significance (reduction in “intolerance of negative thoughts and emotions towards the relative”). Suggestions are made regarding possible alternative outcome measures for future studies to capture participants’ experience more fully, along with potential adaptations and future directions for the intervention. Originality/value: This study provides preliminary evidence of the acceptability and feasibility of a group therapeutic intervention based on ACT for informal caregivers of dementia.

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Societal perceptions of caregivers linked to culture across 20 countries: Evidence from a 10-billion-word database

Background: Caregivers play an indispensable role in society. In 2017, 41 million family caregivers in the United States provided approximately 34 billion hours of care to their aging parents, spouses, partners and friends. The estimated economic value of their unpaid contributions amounted to $470 billion. Despite their invaluable contributions, caregivers often operate in a reality of inadequate social support. Little is known about the factors linked to the societal perceptions of caregivers, and our study seeks to contribute by filling this gap. Importantly, whether society honors or stigmatizes caregivers is critical as it could impact caregiving decisions and either exacerbate or ameliorate caregiver burden. Methods: We leveraged an online media database of 10 billion words collated from over 28 million articles, across 20 countries, to analyze societal perceptions of caregivers. Results: Of the 20 countries, 18 evidenced neutral to positive perceptions of caregivers. Bangladesh and Ghana had the most positive perceptions, while Sri Lanka and Tanzania had the most negative perceptions. Aging demographics and culture (individualism, masculinity and uncertainty avoidance) were significantly associated with perceptions of caregivers. Conclusions: Findings suggest that positive perceptions of caregivers can be better cultivated when caring is lauded as a virtuous act that aids in reducing the care deficit. This study is among the first to analyze the societal perceptions of caregivers globally, and lays the groundwork to design culturally sensitive interventions that increase society’s appreciation for caregivers.

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Societal costs of informal care of community-dwelling frail elderly people

Aims: The aims of this study are to describe informal care activities and to estimate the societal cost of informal care of community-dwelling frail elderly people in Sweden. Methods: This study was performed within the frame of the TREEE project that included 408 frail elderly patients. At index hospitalisation (baseline), primary informal caregivers of the patients were provided with a questionnaire on informal care during a period of three months. Questions concerning other (secondary) informal caregivers were also included. A rough estimate of the total cost of informal care of frail elderly people in Sweden was obtained by combining data from this study with published data and official statistics. Results: In total, 176 informal caregivers responded, and 89% had provided informal care. The informal caregivers (primary and secondary) provided care for an average of 245 hours over three months. Taking care of the home was the dominating activity. In total, the mean cost of informal care was estimated to approximately 18,000 SEK (€1878) over three months, corresponding to an annual cost of approximately 72,000 SEK (€7477) per frail elderly person. The total annual societal costs of informal care of community dwelling frail elderly people aged 75 years and older in Sweden was estimated to be approximately 11,000 million SEK (€1150 million). Conclusions: The care of frail elderly people provided by informal caregivers is extensive and represents a great economic value. Although our calculations are associated with uncertainty, the size indicates that supporting informal caregivers should be a priority for society. 

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Diabetes‐by‐Proxy: Virtual Embodiment of Disease by Oklahoma Choctaw Parents of Children with Type 1 Diabetes

Background: Childhood type 1 diabetes is increasing globally and requires meticulous at‐home care due to risks for fatal outcomes if glucose levels are not continuously and correctly monitored. Type 1 diabetes research has focused on metabolism and stress measurements confirming high parental worry levels. However, research on caregivers’ management strategies has lagged. Methods: We show parents’ intense, all‐encompassing work to preempt a disastrous drop in their child's glucose as a stress‐path to the virtual embodiment of their child's condition. That is, parents acquire diabetes‐by‐proxy. Our findings derive from four and half years of ethnographic research with the same 19 families in the Choctaw Nation of Oklahoma. Findings: These parents were exceptionally engaged as caregivers and distressed by the potentially fatal outcome of type 1 diabetes mismanagement. Conclusions: Diabetes‐by‐proxy names the parents’ experience and validates clinical attention to them as they cope with their crucial caregiving commitment.

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The course of readmission in frail older cardiac patients

Aim: The aim of this study is to explore patients’ and (in)formal caregivers’ perspectives on their role(s) and contributing factors in the course of unplanned hospital readmission of older cardiac patients in the Cardiac Care Bridge (CCB) program.DesignThis study is a qualitative multiple case study alongside the CCB randomized trial, based on grounded theory principles. Methods: Five cases within the intervention group, with an unplanned hospital readmission within six months after randomization, were selected. In each case, semi‐structured interviews were held with patients (n = 4), informal caregivers (n = 5), physical therapists (n = 4), and community nurses (n = 5) between April and June 2019. Patients’ medical records were collected to reconstruct care processes before the readmission. Thematic analysis and the six‐step analysis of Strauss & Corbin have been used. Results: Three main themes emerged. Patients experienced acute episodes of physical deterioration before unplanned hospital readmission. The involvement of (in)formal caregivers in adequate observation of patients’ health status is vital to prevent rehospitalization (theme 1). Patients and (in)formal caregivers’ perception of care needs did not always match, which resulted in hampering care support (theme 2). CCB caregivers experienced difficulties in providing care in some cases, resulting in limited care provision in addition to the existing care services (theme 3). Conclusion: Early detection of deteriorating health status that leads to readmission was often lacking, due to the acuteness of the deterioration. Empowerment of patients and their informal caregivers in the recognition of early signs of deterioration and adequate collaboration between caregivers could support early detection. Patients’ care needs and expectations should be prioritized to stimulate participation.Impact(In)formal caregivers may be able to prevent unplanned hospital readmission of older cardiac patients by ensuring: (1) early detection of health deterioration, (2) empowerment of patient and informal caregivers, and (3) clear understanding of patients’ care needs and expectations.

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Caregiver economics: A framework for estimating the value of the American Jobs Plan for a caring infrastructure

The authors present a method for estimating the value and cost effectiveness of the U.S. government initiative known as the American Jobs Plan, particularly regarding the program's allocation of funds targeted toward the expansion of access to home and community-based services (HCBS) for older citizens with disabilities.

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Cancer patients' experiences of realization of relatives' participation in hospital care: a qualitative interview study

Background: Relatives' participation in the care of patients with cancer in hospital is essential to both patients and relatives. Although the meaning of relatives' participation has been recognized, knowledge about how patients experience this participation is rare. Aims: To describe the experiences of patients with cancer of the realization of relatives' participation in the hospital care. Materials & Methods: A qualitative study with semi‐structured interviews of patients with cancer (n=21) were conducted. Data was analyzed using inductive thematic analysis. Results: Three main themes were identified among patients' experiences: Relative as part of the patient's care, Relative supporting patient's coping process, and Hospital enabling or preventing relatives' participation. The relatives were available for patients in seeking information and in the decision‐making process. They helped with the daily needs of the patient, and supported patients emotionally and by managing everyday life at home. The behavior and attitudes of the healthcare professionals and the special nature of the hospital played a central role in the experiences. Conclusion: The role of relatives is an important part of the coping process and care of patients with cancer in the hospital.

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Advancing Family Presence Policies and Practices in the Canadian Health and Care Context: COVID-19 and Beyond

With the onset of the COVID-19 pandemic, restrictive visitor policies have curtailed the ability of family caregivers to be present to partner in the care of loved ones. Building on the success of the "Better Together" campaign, Healthcare Excellence Canada -- the newly amalgamated organization of the Canadian Foundation for Healthcare Improvement and the Canadian Patient Safety Institute -- has co-developed policy guidance and "Essential Together" programming that recognizes the significant role of essential care partners. This work aims to support the safe reintegration of essential care partners into health and care organizations across Canada during the pandemic and beyond.

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Caregiving in the United States 2020

First conducted in 1997 by the National Alliance for Caregiving and AARP, Caregiving in the U.S. 2020 update presents a portrait of unpaid family caregivers. Family and friends comprise the most basic unit of any society. For individuals who take on the responsibility of caring for another person through sickness or disability, it can often be challenging to see beyond the individual experience. As individuals, families, and communities continue to confront the novel coronavirus (COVID-19), we are reminded how much we need our family and close friends to keep going. As the U.S. continues to address this unprecedented situation, the need to recognize and support family caregivers as the cornerstone of society will only become more important. Today, more than one in five Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53.0 million adults in the United States, up from the estimated 43.5 million caregivers in 2015.

The report highlights the nearly 48 million caregivers caring for someone over the age of 18. Key findings include:

  • Nearly one in five (19%) are providing unpaid care to an adult with health or functional needs.
  • More Americans (24%) are caring for more than one person up from 18% in 2015.
  • More family caregivers (26%) have difficulty coordinating care up from 19% in 2015.
  • More Americans (26%) are caring for someone with Alzheimer’s disease or dementia up from 22% in 2015.
  • More Americans (23%) say caregiving has made their own health worse up from 17% in 2015.
  • Family caregiving spans across all generations, including Boomers, Gen-X, Gen-Z, Millennials, and Silent.
  • 61% of family caregivers are also working.

This study highlights the varied experiences and situations of caregivers in the United States and points to the impacts many caregivers face as a result of their stepping up to help family and friends.

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The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms

Introduction: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. Methods: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. Results: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. Conclusion: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

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Integration of family caregivers in delirium prevention care for hospitalized older adults: A case study analysis

Aim To understand how family caregivers of older adults hospitalized for orthopaedic surgery are integrated by nurses in delirium prevention care. Design Multiple case study. Methods The sample consisted of eight cases. Each case comprised an older adult, a family caregiver, and a nurse. Data were collected from September 2017 - April 2018 through various instruments, including semi-structured interviews and family caregiver logs. Within- and across-case analyses were conducted, based on the model of The Care Partner Engagement developed by Hill, Yevchak, Gilmore-Bykovskyi, & Kolanowski (Geriatric Nursing, 35, 2014, 272). Results Two themes emerged: (a) family caregivers were engaged in caring for the older adults during their hospital stay, though they had differences in terms of views and needs; and (b) family caregivers communicated with nurses but nurses did not recognize their role and did not integrate them much in care. Conclusion The presence and availability of family caregivers, their sense of responsibility towards the hospitalized older adults, and their positive effects on them suggest that family caregivers could be integrated more systematically in a care partnership with nurses. Poor integration of family caregivers in delirium prevention care shows that nurse delirium prevention competencies and their relational skills for communicating effectively with family caregivers need to be developed further. Impact Integrating family caregivers in delirium prevention care for older adults is a challenge for nurses. Family caregivers are engaged during the hospitalization of older adults, though differences and problems exist between the two groups. While there is communication between patients, family caregivers, and nurses, nurses do not recognize the role of family caregivers and hardly integrated them in the delirium prevention care of hospitalized older adults. Nurses must adopt a patient- and family-centred approach. Care and training facilities must make resources available to implement this approach in nursing practice.

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Important components for Dutch in-home care based on qualitative interviews with persons with dementia and informal caregivers

Background Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. Objective To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. Design Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. Setting and participants Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. Results Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. Conclusion This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.

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Video-consulted rounds with caregivers: The experience of patients with cancer

This study aim to explore how adult patients admitted to an oncology ward experience video-consulted rounds with caregivers as a mean for family involvement. The methodological framework for the study was Interpretative phenomenological analysis. Participant observations during video-consulted rounds and semi-structured interviews were conducted between November 2018 and March 2019 at the Department of Oncology, Odense University Hospital, Denmark. 15 patients participated in the study. Overall, patients experienced video-consulted rounds as a satisfactory way of involving their families in rounds while also creating a sense of presence and comfort. Appropriate positioning of stakeholders could influence the experience of virtual rounds. Limitations included the lack of physical care from caregivers, specifically when patients discussed serious matters with health care professionals. Furthermore, patients experienced challenges in reading body language when communicating virtually with their families. The study provides important knowledge regarding patients' experiences with video-consulted rounds with caregivers. In concordance with patients' experiences, video-consulted rounds can offer a family centered way to involve caregivers in patient rounds. However, there should be awareness in regard to how the technology is used and to which context it is applied. • Caregivers involvement in patient rounds is pivotal, yet challenged. • Video consulted rounds with caregivers is valued by patients with cancer. • Video consulted rounds offer a family centered approach in patient care. • Reflected use of the video technology is required for optimum use.

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Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study (RP411)

Objectives Describe the use of a Symptom Assessment (SA) Toolkit designed to support in-home caregivers of homebound older adults with serious illness. Explore next steps in evaluation and dissemination of the Toolkit. Importance. Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting in-home caregivers in symptom assessment (SA) may improve suffering among older adults. Objective(s). To test the feasibility of a SA-Toolkit for caregivers to assess and track older adults' symptoms. Method(s). With multi-stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, a validated 5-faces severity scale, and an easy-touse tracking system with phone numbers of family/ friends/clinicians to contact if symptoms worsened. We recruited English-speaking patients $65 years old and their caregivers from a home-based geriatrics program in San Francisco. Using validated questionnaires at baseline and 1-week, we assessed patients' symptoms, patients' and clients' self-efficacy with SA (5- point Likert scale), and acceptability (i.e., recommend to others). We used Wilcoxon signed-rank tests. Results. Eleven patient-caregiver dyads participated. Patients were 84.7 years old (SD 5.7), 81.8% women, and 27.3% non-white. From baseline to 1-week, the mean number of symptoms decreased (3.7 (1.5) at baseline to 2.6 (1.8) at follow-up, p¼0.03). Specifically, the number of patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 (0.3) to 4.8 (0.3), p¼0.09). Patients found the symptom illustrations easy-to-use (8.7 on 10-point scale), but the faces scale less so (7.3/10) because it provided ''too many choices.'' Caregivers liked the SA-Toolkit because it was ''easy to use''; nearly all (10/11, 90%) would recommend it to others. Suggested improvements included personalizing materials according to patients' symptoms. Conclusion(s). The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in symptom assessment. Acceptability of the Toolkit was high among both patients and caregivers. Impact. A SA-Toolkit is feasible and may help reduce suffering in frail, older patients.

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A qualitative study of family carers views on how end-of-life communication contributes to palliative-oriented care in nursing home

Background: Although family-centered communication about end-of-life care has been recognized to promote palliative-oriented care in nursing home (NH), how this communication may work is still unknown. Therefore, we explored the mechanisms by which end-of-life communication may contribute to palliative-oriented care in NH from the perspective of bereaved family carers.; Methods: A descriptive qualitative design was performed. Interviews were conducted with 32 bereaved family carers whose relative had died between 45 days to 9 months prior from 13 different NHs. A two-steps analysis process firstly with deductive and then with inductive content analysis was adopted.; Results: Four mechanisms by which end-of-life communication contributed to palliative-oriented care were identified: a) promoting family carers understanding about their relative's health conditions, prognosis, and treatments available; b) fostering shared decision-making between healthcare professionals and residents/family carers; c) improving knowledge of residents' preferences; and d) improving knowledge of family carers' preferences.; Conclusion: Clear and in-depth communication provides insight into residents' and family carers' preferences for care and treatment at the end-of-life, and increases understanding and shared decision-making.

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Provider Views on Integrating Family Caregivers in Clinical Encounters (RP413)

Objectives: • Critique, from the view of providers, the potential benefits and drawbacks of integrating family caregivers into clinical encounters. • Describe provider attitudes, beliefs and ethical and clinical considerations that may affect the integration of family caregivers into clinical encounters.  Importance: Family caregivers frequently accompany patients to clinical encounters, particularly when dealing with serious illnesses. Family caregivers, however, are not often invited to be active participants in clinical encounters. Little is known about provider perceptions on engaging caregivers in clinical encounters.  Objective(s): Our aim was to better understand providers' perceptions on engaging caregivers during clinical encounters.  Method(s): Twenty providers in primary, specialty, or palliative care from our institution in 3 distinct geographic areas of the United States (southeast, midwest, and southwest) were invited by email to participate in individual interviews (via telephone or in-person). Using a standard interview guide, providers were asked about their previous experiences with caregivers in clinical encounters and their views about integrating caregiver assessment into clinical encounters. Data were inductively analyzed using a thematic approach.  Results: We identified 3 themes among this sample of providers regarding: 1) the appropriate role of caregivers in the clinical encounter; 2) effectively managing the conversation when caregivers are involved; and, 3) the systemic barriers to caregiver integration. Providers chiefly view caregivers as sources of supplemental information or as absorbers or reinforcers of clinical instructions for care at home. Providers voiced concerns about the ethics of assessing caregiver capacity to provide assistance to the patent without having clinical authority to treat the caregiver or the adequate resources to provide help to the caregiver. Finally, providers identified structural barriers, including time constraints, for integrating caregivers into the clinical visit.  Conclusion(s): These findings provide insight into provider attitudes on the family caregivers' role in clinical encounters, a perspective that is essential for understanding opportunities and challenges for implementing caregiver interventions in clinical settings.  Impact: Further work is needed to identify the best strategies to overcome barriers to integrating caregivers in clinical encounters in order to improve the holistic care of patient-caregiver units.

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Potential cost savings for selected non-pharmacological treatment strategies for patients with Alzheimer's disease in Finland

Objective: To compare the costs and monetary benefits of non-pharmacological interventions for patients with Alzheimer's disease in real-world settings. Methods: A systematic review was performed to determine the most effective treatment strategies for being able to stay at home for patients with Alzheimer's disease. Care-management, family support, and multidisciplinary rehabilitation were identified as effective interventions applicable in the Finnish healthcare setting. Data on medical and social service costs, and the costs of residential care for all patients newly diagnosed with Alzheimer's disease in 2 major cities in Finland were analysed in a 4-year follow-up study. The potential cost savings of the different treatment strategies were assessed. Results: The annual cost increased from (sic)9,481 to (sic)28,400 (mean per patient) during the 4-year follow-up. Cost savings were achieved in care-management, family support programmes, and rehabilitative cognitive and social activation if the patients' transition to long-term care was delayed by 2.8, 1.8 and 43.0 days, respectively. Conclusion: Care-management and informal caregiver support for patients with Alzheimer's disease may benefit patients and result in concurrent cost savings. Delaying the decline in cognitive and social functioning through rehabilitation is indicated for more severe phases of Alzheimer's disease, and the costs appear to be compensated by savings in the cost of long-term care.

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Informal And Formal Home Care For Older Adults With Disabilities Increased, 2004-16

Rates of informal home care use among older adults with disabilities increased from 2004 to 2016, such that in 2016 almost three-quarters of these adults received informal home care. Informal care remains the most common source of home care, even though formal home care use grew at almost twice the rate, with a 6-percentage-point increase to 36.9 percent in 2016.

The article discusses the 36.9 percent increase in rates of informal and formal home care use of older adults with disabilities in the U.S from 2004 to 2016. Topics covered include the engagement of caregivers in the absence of a national system to pay for long-term services, estimates of home care received by cohorts of these adults, and race and regional variations in formal versus informal home care. Also noted is the importance of health care differences in policy making.

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Informal and formal care among persons with dementia immediately before nursing home admission

Background: Dementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden. This study assesses the use of formal and informal care resources among persons with dementia during the last month before nursing home admission. It also describes main providers of informal care and assesses the extent of informal care rendered by the extended social network. Methods: In this cross-sectional study, we collected data about persons with dementia that were newly admitted to a nursing home in Norway. Information about the amount of formal and informal care during the last 4 weeks preceding nursing home admission was collected from the primary caregivers. Clinical data were collected by examining the patients, while sociodemographic data was collected from the patients' files. Results: A total of 395 persons with dementia were included. The amount of informal care provided by the family caregiver was 141.9 h per month SD = 227.4. Co-resident patients received five times more informal care than non-co-residents. Informal care from the extended social network was provided to 212 patients (53.7%) with a mean of 5.6 (SD = 11.2) hours per month and represented 3.8% of the total informal care rendered to the patients. Formal care was provided to 52.7% of the patients with a mean of 18.0 (SD = 50.1) hours per month. Co-residency was significantly associated with more informal care, and the associations varied with respect to age, relation to the caregiver, and the caregiver's working situation. Good/excellent general health was associated with less formal care. Conclusion: Persons with dementia on the verge of admission to a nursing home are mainly supported by the family caregiver, and the use of informal care is particularly high among co-residents. In order to delay nursing home admission, future research should explore the unrealized care potential in extended social networks, as well as the potential for increasing the number of recipients of formal care services.

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The impact of availability and identity of the caregiver on the post-stroke patient

Background: After having a stroke, most patients are helped by a caregiver with activities that they cannot perform by themselves. The caregiver presence and actions are an important variable that may affect rehabilitation in many ways. The aim of this review study was to evaluate the impact of caregiver presence (or absence) and identity (spouse, family, or foreign domestic worker) on therapeutic exercise performance, depression symptoms, patient–spouse relations and total functional outcomes of stroke patients. Assessing these effects may help health care professionals and families to prioritise/choose the caregiver for their patient/family member. Methods: A narrative literature review was conducted, focusing on one-direction effects (caregiver on patient effects) on the topics of interest mentioned, in a post-stroke population. PubMed, CINAHL, PEDro, Trip database, and Google Scholar were searched, and included studies of most designs and research qualities. The search strategy had not been specified before commencing the review. Each study was analysed individually with the purpose of synthesising the available evidence to achieve a greater understanding of this topic. Results: A total of 17 relevant papers were included: six randomised controlled trials, six observational studies, two systematic reviews, two survey-based studies, and one case series. Trials were consistent with the positive effect that caregivers have on therapeutic exercise performance. Studies have shown a positive effect of caregivers on the patient's depressive symptoms, but only at the chronic phase after stroke. A spouse caregiver seems to more positively affect the patient–spouse relations in the acute phase of rehabilitation, while foreign domestic workers can improve these relations at more chronic phases. The presence of a caregiver is shown to decrease functional outcomes within institutionalised rehabilitation centres, while it is necessary and positively affects functionality at more chronic phases within community settings. Conclusions: The advantages and disadvantages of employing a caregiver depend in many cases on the rehabilitation phase. The caregiver might be beneficial or harmful to the patient's functional progress, depressive symptoms and marital relationship depending on the rehabilitation phase. More studies are needed to assess the caregiver effects on post-stroke patients' rehabilitation and quality of life. 

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Health-care use and cost for multimorbid persons with dementia in the National Health and Aging Trends Study

Background: Most persons with dementia have multiple chronic conditions; however, it is unclear whether co-existing chronic conditions contribute to health-care use and cost. Methods: Persons with dementia and >= 2 chronic conditions using the National Health and Aging Trends Study and Medicare claims data, 2011 to 2014. Results: Chronic kidney disease and ischemic heart disease were significantly associated with increased adjusted risk ratios of annual hospitalizations, hospitalization costs, and direct medical costs. Depression, hypertension, and stroke or transient ischemic attack were associated with direct medical and societal costs, while atrial fibrillation was associated with increased hospital and direct medical costs. No chronic condition was associated with informal care costs. Conclusions: Among older adults with dementia, proactive and ambulatory care that includes informal caregivers along with primary and specialty providers, may offer promise to decrease use and costs for chronic kidney disease, ischemic heart disease, atrial fibrillation, depression, and hypertension.

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Experiences of Cancer Patients on their Visit to Cancer Outpatient Department: A Qualitative Study from a Regional Hospital in Mauritius

Introduction: Cancer care studies suggest that being diagnosed with cancer, the patients and their families face various hardships such as financial crisis, increased mental stress, difficulty in managing their relationships and routine lifestyle activities. Moreover, psycho-oncological studies also describe the intense distress and disbelief experienced by patients on their initial diagnosis. The role of cancer care needs to be understood as well as implemented in cancer treatment, thus further enriching the insights of the treating oncologist about their patient’s state of mind. This ultimately allows for the betterment of treatment compliance. Aim: To study the experience of cancer patients on their visit to the cancer clinic and the emotional turmoil after diagnosis and throughout treatment. Materials and Methods: A descriptive phenomenological qualitative study was designed and conducted from August to September 2019 at the Oncology Department of Victoria Hospital, Mauritius. Participation in the study was voluntary, and written consent was taken from each of the study participants. The data was collected on an in-depth one on one interview basis and was recorded, and the purposive sampling technique was used for collecting the data. Results: Out of 12 patients, the male/female ratio equated to 5:7, these patients were from the ages of 23 to 70 years and the mean age of the participants was 48.2 years. A total of 25 different codes were generated in the study, 7 main themes were established there from (Motivational factors, Psychological factors, Society, Message for others, Awareness about the disease, Economic factors and Perception towards the healthcare environment). Conclusion: The main implication that emerged from this study is the notion of the lateral views of informal caregivers, family members and medical professionals, towards the patient’s feelings and emotional reactions in respect to their experience of cancer. It has been noted that the positivity of the caregiver corresponds directly to positive outcomes in the cancer treatment whilst simultaneously decreasing the psychological ramifications of the process.

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Engaging Caregivers in Health-Related Housing Decisions for Older Adults With Cognitive Impairment: A Cluster Randomized Trial

Background and Objectives Informal caregivers are rarely as involved as they want to be in the housing decisions of cognitively impaired older adults. Lack of awareness of available options and their benefits and risks may lead to decisions that do not reflect older adults' preferences, and to guilt and regret. We assessed the effect of training home care teams in interprofessional shared decision-making (SDM) on the proportion of caregivers who report being active in this decision. Research Design and Methods In a two-arm pragmatic cluster randomized trial with home care teams working in health centers in the Province of Quebec, we randomized health centers to receive training in interprofessional SDM (intervention) or not (control). Eligible caregivers had made a housing decision for a cognitively impaired adult aged 65 years or older who was receiving services from a home care team. The primary outcome was the proportion of caregivers reporting an active role in decision making. We performed intention-to-treat multilevel analysis. Results We consecutively enrolled a random group of 16 health centers and recruited 309 caregivers, among whom 296 were included in the analysis. In the intervention arm, the proportion of caregivers reporting an active role in decision making increased by 12% (95% CI −2% to 27%; p =.10). After removal of an influential cluster outlier, the proportion increased to 18% (95% CI: 7%–29%; p <.01). Discussion and Implications Training home care teams in interprofessional SDM increased caregiver involvement in health-related housing decisions for cognitively impaired older adults.

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The Effect of Medicaid Expansion on Caregiver's Quality of Life

Medicaid expansion has been shown to improve access to care, health, and finances in general populations. Until now no studies have considered how Medicaid expansion may affect informal family caregivers who are the backbone of the long term supports and services infrastructure. Family caregivers provide substantial cost savings to Medicare and Medicaid. Yet, they sustain financial, physical, and mental health strain from their caregiving role which Medicaid expansion may offset. This study evaluated the impact of Medicaid expansion on caregivers' mental health using 2015–2018 data from the Behavioral Risk Factor Surveillance System. After adjusting for demographics, socioeconomic status, and health behaviors, caregivers in Medicaid expansion states had a significantly fewer number of poor mental health days in the previous month than caregivers in non-expansion states (ß = −0.528, CI −1.019, −0.036, p <.01). Study findings indicate that Medicaid expansion state status was protective for caregiver's mental health.

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Unseen and undervalued: The value of unpaid care provided to date during the COVID-19 pandemic

Research released for Carers Rights Day 2020 reveals unpaid carers save UK state £530 million every day of the pandemic. Care provided by families valued at £135 billion over course of the pandemic so far.  Carers UK calls on Government to recognise contribution of millions of carers and protect their health and wellbeing.

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Can in-hospital or post discharge caregiver involvement increase functional performance of older patients? A systematic review

Background: Regaining pre-hospitalization activity levels is only achieved in 30-50% of older patients. Extra physiotherapy time has been proven to improve functional outcome and shorten length of stay, but is costly. Considering their key role in caring for older people, involving informal caregivers in rehabilitation might further improve functional performance. Aim: To determine if in-hospital or post discharge caregiver involvement can increase functional performance in older adults. The secondary aim was to determine if caregiver involvement can influence, quality of life of patient and caregiver, medical costs, readmission rate, discharge location, and mortality. Design: Systematic review with narrative synthesis. Methods: The electronic bibliographic databases MEDLINE, Embase, CINAHL, Cochrane and Web of Science were searched for (quasi) experimental and observational studies, with the following inclusion criteria; caregiver involvement regarding functional performance, mean age over 65 years, admitted to a hospital unit and subsequently discharged to their home setting. Risk of bias was assessed with the Rob 2 (randomized trials) and the ROBINS-1 tool (non-randomized studies). Results: Eight studies of an initial 4683 were included: four randomized controlled trials, one prospective cohort study, one non-randomized controlled trial, one subgroup analysis of an RCT and one prospective pre-post study. All but one study included patients with stroke. Three types of caregiver interventions could be distinguished: a care pathway (inclusion of caregivers in the process of care), education on stroke and teaching of bed-side handling-skills, and caregiver-mediated exercises. The one study evaluating the care pathway reported 24.9% more returns home in the intervention group. Studies evaluating the effect of education and bed-side handling-skills reported higher effect sizes for several outcomes with increasing session frequency. All studies with caregiver-mediated exercises showed beneficial effects on functional performance, immediately after the intervention and within 3 months follow-up. Conclusion: The findings of this review suggest that involvement of caregivers in the rehabilitation of older adults leads to better functional performance up to 3 months after initiation. However, evidence is low and mainly focusing on stroke.

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Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the Coronavirus Disease 2019 Pandemic

During the first few months of the coronavirus disease 2019 (COVID-19) pandemic, Canadian nursing homes implemented strict no-visitor policies to reduce the risk of introducing COVID-19 in these settings. There are now growing concerns that the risks associated with restricted access to family caregivers and visitors have started to outweigh the potential benefits associated with preventing COVID-19 infections. Many residents have sustained severe and potentially irreversible physical, functional, cognitive, and mental health declines. As Canada emerges from its first wave of the pandemic, nursing homes across the country have cautiously started to reopen these settings, yet there is broad criticism that emerging visitor policies are overly restrictive, inequitable, and potentially harmful. We reviewed the nursing home visitor policies for Canada's 10 provinces and 3 territories as well as international policies and reports on the topic to develop 10 provi-informed, data-driven, and expert-reviewed guidance for the re-opening of Canadian nursing homes to family caregivers and visitors. 

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Essential Family Caregivers in Long-Term Care During the COVID-19 Pandemic

Four decades ago, my parents were not permitted to hold their dying infant because they were “visitors” to the intensive care unit. I learned from them that our health care policies sometimes carry huge human costs. As a geriatrician and medical director of a long-term care (LTC) facility, I have learned that family members are not merely visitors; family members are critical partners in our care. The practice of social distancing and physical separation is important to keep our residents in LTC facilities safe in the COVID-19 pandemic, but the time has come to revise our policies allowing family presence at the bedside of loved ones....

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The Family Caregiving Crisis Meets an Actual Pandemic

The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making. 

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A Hitchhiker's Guide to caring for an older person before and during coronavirus‐19

Coronavirus‐19 (COVID‐19) has reconfigured working lives with astonishing velocity. Older people have suffered the worst effects of the pandemic, with governments marginalizing or overlooking their needs. Women perform the majority of care for older people, often compromising their working lives and health. Yet in academic articles their voices are often filtered or aggregated in quantitative studies. Based on a weave of personal experiences and secondary research, the article traces a path through UK forms of care and shows how the inadequate response to COVID‐19 stemmed from existing policies embedded in health and social care. COVID‐19 has severed important informal care work, rendering the vulnerable yet more exposed and carers anxious and bereft. Longitudinal research capturing the trajectory of care from the perspective of older people and their carers would lead to improved support hence gender equality. 

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Amid the COVID-19 Pandemic, Meaningful Communication between Family Caregivers and Residents of Long-Term Care Facilities is Imperative

Older adults residing in long-term care facilities are especially vulnerable for severe illness or death from COVID-19. To contain the transmission of the virus in long-term care facilities, federal health officials have issued strict visitation guidelines, restricting most visits between residents and all visitors, including family members. Yet, many older adults rely on family care for social support and to maintain their health, well-being, and safety in long-term care facilities, and therefore need to stay connected to their families. The federal government, state and local leaders, and long-term care facilities should take further actions to enable the relationship between residents of long-term care facilities and families during the COVID-19 pandemic. 

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The invisible workforce during the COVID-19 pandemic: Family carers at the frontline [version 1; peer review: 2 approved]

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.

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The effect of caregiver's and nurse's perception of a patient's discharge readiness on postdischarge medical resource consumption

Aims The purpose of this study was to validate patient's primary caregiver and their nurse's perception of patient discharge readiness assessment and their association with postdischarge medical consumption. Design The study employed a descriptive research, prospective longitudinal study design. Method The study was performed in a ward of a medical centre in Taipei, Taiwan, from June 2017–May 2018. Obtained data were analysed using an independent t test, one‐way ANOVA and logistic regression approach. Results/findings The number of comorbidities and the number of days of hospital stay were positively associated with post discharge emergency room visits. Caregiver readiness for hospital discharge had significant negative correlation with patient's 30‐day readmission. Both caregiver and nurse readiness for the hospital discharge scale score were not factors associated with the patients' 30‐day emergency room visit. Conclusion Based on the research findings, to assess the discharge readiness as perceived by caregivers at patients' discharge is recommended. Impact Caregiver and nurse scores on readiness for hospital discharge showed a significant positive correlation. The higher the score of a caregiver's readiness for a patient's hospital discharge, the lower the 30‐day readmission rate. Family‐centred care enables patients to safely pass though the transition phase from hospital to community and reduces the postrelease consumption of medical resources. The discharge readiness perceived by caregivers should be included in any decision‐making

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Making Women's Unpaid Care Work Visible in India: Importance and Challenges

From the 1970s onward, the work performed by women within the household was critically examined, and a feminist critique of Marx emerged. The critique was first developed in the Campaign for Wages for Housework, founded in 1972, by Mariarosa Dalla Costa, Selma James and other renowned feminists. A major contribution of this critique was to highlight women's domestic labor in the process of capital accumulation, an issue which Marx did not address. This movement therefore sought to make visible women's work which was naturalized into nonexistence by capitalism. This problem of visibility exists all over the world, and women continue to bear the brunt of unpaid care work; they are perceived as "natural" caregivers and shunned for seeking paid care services. Although this phenomenon is common all over the world, this paper will deal with the importance of making women's unpaid work visible in India, as India is a developing country and more people tend to engage in unpaid subsistence work (production for self-consumption, unpaid work in family enterprises and care related work) in developing countries compared to wealthier countries. Portraying the importance and challenges of making women's unpaid care work visible in India can trigger economic and social development of the country. This paper aims to put forward the value of women's unpaid care work in India, and to pinpoint the obstacles that stand in the way of exposing their unpaid contributions. Considering the context of India this paper will examine the following questions: 1. Why is it important to make unpaid care work visible? 2. What are the challenges of making unpaid care work visible? The questions mentioned above will be answered by looking at suitable literature so that theoretical and methodological issues that have emerged can be brought forward and the problems and recommendations can be grasped to arrive at a conclusion.

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Leveraging institutional support for family caregivers to meet the health and vocational needs of persons with disabilities

Background: Family caregivers might enhance veteran engagement in health and nonhealth services (i.e., vocational/educational assistance). Purpose: To describe how veterans with disabilities perceive their recovery needs, identify types of social support from caregivers that help veterans engage in Veterans Affairs (VA) health and nonhealth services, and explore participant views of VA institutional support for caregivers to help veterans engage in these services. Methods: Joint in-depth qualitative interviews with U.S. veterans and family caregivers (n = 26). Findings: Caregivers performed social support functions that helped veterans engage in health and vocational/educational services and institutional support from VA enhanced caregivers’ capacity. Discussion: Caregivers are well positioned to align health and nonhealth services with patient needs to enhance recovery. Staffing a point person for caregivers within the health system is key to help families develop a coordinated plan of treatment and services to improve patient success across health and nonhealth domains. Nurses are well suited to perform this role. 

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Caregiver involvement in psychiatric inpatient treatment - a representative survey among triads of patients, caregivers and hospital psychiatrists

Aims Studies on the frequency of caregiver involvement in representative inpatient samples are scarce. The aim of our study was to conduct a representative survey on caregiver involvement in routine inpatient care involving all three parties (patients, caregivers, psychiatrists). Therefore, we performed face-to-face interviews consisting of open-ended questions to gain a deeper understanding of when and how caregivers are involved in care treatment and to identify which topics are mainly discussed. Methods This cross-sectional survey included inpatients from 55 acute psychiatric wards across ten psychiatric hospitals, their treating psychiatrists and, when possible, their caregivers. In total, we performed semi-structured face-to-face interviews with 247 patients, their treating psychiatrists and 94 informal caregivers. Each psychiatrist named the next two to three patients to be discharged. After a patient had given informed consent, the interview was performed by a researcher. In addition, the psychiatrist and, when possible, the primary caregiver identified by the patient, were also interviewed. Results It was perceived by both patients and psychiatrists that contact between caregiver and psychiatrist had taken place in one-third of the patient cases. Predictors for psychiatrist-caregiver-contact were revealed in the patient's diagnosis (schizophrenia), a lower history of inpatient stays, and the respective hospital. According to psychiatrists the most frequent subjects of discussion with caregivers involved therapeutic issues and organisational and social-psychiatric topics (e.g. work, living and social support). Patients and caregivers stated that psychiatric treatment and the diagnostic classification of the mental illness were the most frequent topics of conversation. For all three groups, the most often cited reason for missed caregiver involvement was the subjective perception that a caregiver was not in fact needed. Conclusions Whether or not caregivers were contacted and involved during an inpatient stay strongly depended on the individual hospital. The frequency of involvement of caregivers can certainly be increased by changing processes and structures in hospitals. All three parties (patients, caregivers and psychiatrists) most often stated that the caregiver was not involved in the treatment because they thought it was unnecessary. Evidence demonstrates the positive effect of caregivers' involvement on the therapeutic process but also on the well-being of the caregiver, therefore it is necessary to increase awareness of this evidence among all three interest groups.

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Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea

Background: Although familial involvement during inpatient care is not uncommon in western countries, the types of caring activities that family members in Asian countries provide are significantly different. These activities may place the family member at risk from a health care-associated infection. This study aimed to examine whether the role of patients' families has been accounted for in the infection prevention and control (IPC) guidelines and policy, using examples from Bangladesh (low-income country), Indonesia (middle-income country), and South Korea (high-income country). Methods: The World Health Organization website and Institutional Repository for Information Sharing, Centers for Disease Control and Prevention website, Australian Government Web Archive, Open Grey, Grey Matters, World Bank, and advanced Google search, as well as the Health Department/Ministry of Health websites for each target country and 4 western countries (Australia, Canada, England, and the United States) were searched. Other databases, such as Embase, Medline, CINAHL, Global Health, ProQuest databases, Google scholar, Web of Science, and Scopus were also searched. This was to review the reflection of the cultural influence in IPC policies/guidelines by reviewing those from the global organizations, which are often used as a blueprint for policy development, as well as those from western countries, which hold different cultures in care arrangement. Search was conducted with attention to the key areas: definition and role of carer in the acute health care facility, involvement of patients/family members in IPC activities, patient and family member hand hygiene, and IPC education. Results: Ninety-two articles were identified based on the criteria for the study. Only 6 acknowledged that care is provided to hospitalized patients by their family members, and only 1 recommended that family members receive the same level of training as health care workers on IPC precautions. Other guides recommended the provision of information on IPC measures as means of patient involvement in the IPC program. Recognition of family caregivers or inclusion of them in the IPC strategies was not included in the target countries' guidelines. Conclusions: Although health care workers are the primary actors when it comes to providing care in acute health care settings, it is important to expand the IPC guides by considering the role of other caregivers. Policies and guidelines should reflect the cultural influence over healthcare. This is especially true when cultural values strongly influence over healthcare arrangements and the healthcare accommodates these cultural influences in the practice. Further work needs to be undertaken on the level of training/education provided to family members in Bangladesh, Indonesia, and South Korea. 

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Caregiving for Community-Dwelling Older Persons in South Korea: Current Formal and Informal Care Use and Expectation

The aim of this study is to examine formal and informal care use among community-dwelling older Korean adults. Older adults aged between 65 and 85 (N = 516) in mid-size city, selected using the probability proportional sampling method, were interviewed in person. One third reported having at least one caregiver. Compared to respondents who did not use any informal/formal care, those who used any formal or informal care were older and were more likely to be prefrail or frail and experienced at least one hospitalization or emergency department use in the past year. Living alone or being experienced with any hospitalization was associated with formal care use. Most care recipients received informal care from families, specifically spouses. Among participants who received no formal/informal care, 19% of them expected to receive formal care support in the future. Substantial support programs for informal caregivers are needed to address the increase in demand and expectation for long-term care.

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A cluster-randomized crossover trial of Montessori activities delivered by family carers to nursing home residents with behavioral and psychological symptoms of dementia

Objectives: One-on-one structured Montessori-based activities conducted with people with dementia can improve agitation and enhance engagement. These activities may however not always be implemented by nursing home staff. Family members may present an untapped resource for enabling these activities. This study aimed to evaluate the impact of the Montessori activities implemented by family members on visitation experiences with people who have dementia. Design: Cluster-randomized crossover design. Setting: General and psychogeriatric nursing homes in the state of Victoria, Australia. Participants: Forty participants (20 residents and 20 carers) were recruited. Intervention: During visits, family members interacted with their relative either through engaging in Montessori-based activities or reading a newspaper (the control condition) for four 30-minute sessions over 2 weeks. Measurements: Residents' predominant affect and engagement were rated for each 30-second interval using the Philadelphia Geriatric Center Affect Rating Scale and the Menorah Park Engagement Scale. The Pearlin Mastery Scale was used to rate carers satisfaction with visits. The 15-item Mutuality Scale measured the carers quality of their relationship with the resident. Carers' mood and overall quality of life were measured using the Center for Epidemiological Studies Depression Scale and Carer-QoL questionnaires, respectively. Results: Linear regressions within the generalized estimating equations approach assessed residents' and carers' outcomes. Relative to the control condition, the Montessori condition resulted in more positive engagement (b = 13.0, 95%CI 6.3-19.7, p < 0.001) and affect (b = 0.4, 95%CI 0.2-0.6, p < 0.001) for the residents and higher satisfaction with visits for carers (b = 1.7, 95%CI 0.45-3.00, p = 0.008). No correction was applied to p-values for multiple comparisons. Conclusion: This study strengthens the evidence base for the use of the Montessori programs in increasing well-being in nursing home residents. The findings also provide evidence that family members are an additional valuable resource in implementing structured activities such as the Montessori program with residents.

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The influence of the combination of visiting frequency of family caregivers and pre-admission frailty status on dependency after discharge among hospitalized older patients: a clinically-based prospective study

Purpose: This study aims to determine whether the combination of visiting frequency of the family caregiver and frailty status has an additive effect on the incidence of dependency among hospitalized older patients. Methods: We analyzed the prospective cohort data of hospitalized older patients (65 years and older) with internal medical problems. The main outcome showed patients’ dependency from admission to a month after discharge. We investigated the visiting frequency of family caregivers and the frailty status and categorized respondents into 4 groups: group 1, visiting frequency 3–7 times a week and non-frailty; group 2, visiting frequency 0–2 times a week and non-frailty; group 3, visiting frequency 3–7 times a week and frailty; or group 4, visiting frequency 0–2 times a week and frailty. We used the Cox proportional hazards regression to estimate the hazard ratios (HR) and confidence intervals (95% CI) of relationships between the combination of visiting frequency and frailty status, and dependency. Results: A total of 182 participants who completed the follow-up were analyzed. During the follow-up period, 45 participants (24.7%) showed some dependency. The hazards regression showed that the low visiting frequency group with presence of frailty had the most increased dependency, compared to other groups (adjusted HR 8.61 [95% CI 3.38–21.98]). Conclusions: The coexistence of low visiting frequency and the presence of frailty influenced dependency more strongly than each factor alone. These findings suggest that the combination of visiting frequency and frailty status is a useful predictor for future dependency. 

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The protective effects of informal care receipt against the progression of functional limitations among chinese older people

Objective: This study investigates the impacts of receiving informal care on the progression of functional limitations among older people aged 60 and older in China. Methods: The data come from three waves of the China Health and Retirement Longitudinal Survey, which collected health- and aging-related information on a nationally representative sample of Chinese older people from 2011 to 2015. Multilevel regression models were used to analyze the data. Results: The protective effect of receiving informal care is stronger for the first 2 years after the baseline survey and tends to fade away or be reversed 4 years later. The protective effect is stronger among older people receiving low-intensity informal care and is gradually weakened with an increase in care intensity. Discussion: Trajectories of function capabilities are deeply embedded in social relationships. In the context of rapid population aging and increasing demand for informal care, government support for caregivers is needed to sustain the protective effects of informal care. 

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Cancer-Related Debt and Mental-Health-Related Quality of Life among Rural Cancer Survivors: Do Family/Friend Informal Caregiver Networks Moderate the Relationship?

Social connectedness generally buffers the effects of stressors on quality of life. Is this the case for cancer-related debt among rural cancer survivors? Drawing on a sample of 135 rural cancer survivors, we leverage family/friend informal caregiver network data to determine if informal cancer caregivers buffer or exacerbate the effect of cancer-related debt on mental-health-related quality of life (MHQOL). Using data from the Illinois Rural Cancer Assessment, a survey of cancer survivors in rural Illinois, we estimate the association between cancer-related debt and MHQOL and whether informal caregiver network size and characteristics moderate this association. Over a quarter of survivors (27%) reported cancer-related debt, and those who did reported worse MHQOL. However, this association only held for survivors who had an informal caregiver network. These findings supplement what is already known about the role of social connectedness in cancer survivors’ health outcomes. We offer possible explanations for these findings. 

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Care in the Time of Coronavirus: Why care work needs to be at the centre of a post-COVID-19 feminist future

New research by Oxfam and partners reveals that while COVID-19 and the related containment efforts have caused increases in women’s – and men’s – unpaid care workloads, women are still doing the bulk of this work. Women living in poverty, single mothers and essential workers as well as those belonging to minority racial and ethnic groups are being pushed furthest to the margins. It shows the real consequences this has for the health, economic security and wellbeing of these women and their families. Women report feeling more anxious, depressed, overworked or ill because of their increased unpaid care work.  Care work is essential to the healthy functioning of our societies and economies and must be better supported through policy and social norms change.  Care work must be at the heart of a feminist COVID-19 recovery.

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Decreasing Heart Failure Readmissions Among Older Patients With Cognitive Impairment by Engaging Caregivers

BACKGROUND: Cognitive impairment is common in older patients with heart failure (HF), leading to higher 30-day readmission rates than those without cognitive impairment. OBJECTIVES: The aim of this study was to determine whether increased readmissions in older adults with cognitive impairment are related to HF severity and whether readmissions can be modified by caregiver inclusion in nursing discharge education. METHODS: This study used prospective quality improvement program of cognitive testing and inclusion of caregivers in discharge education with chart review. Two hundred thirty-two patients older than 70 years admitted with HF were screened for cognitive impairment using the Mini-Cog; if score was less than 4, nurses were asked to include caregivers in education on 2 cardiovascular units with an enhanced discharge program. Individuals with ventricular assist device, transplant, or hospice were excluded. Measurements include Mini-Cog score, 30-day readmissions, readmission risk score, ejection fraction, brain natriuretic peptide, and medical comorbidities. RESULTS: Readmission Risk Scores for HF did not correlate with Mini-Cog scores, but admission brain natriuretic peptide levels were less abnormal in those with better Mini-Cog scores. Only for patients with cognitive impairment, involving caregivers in discharge teaching given by registered and advanced practice nurses was associated with decreased 30-day readmissions from 35% to 16% (P = .01). Readmission rates without/with cognitive impairment were 14.1% and 23.8%, respectively (P = .09). Abnormal Mini-Cog screen was associated with a significantly increased risk of 30-day readmission (odds ratio, 2.23; 95% confidence interval, 1.06-4.68; P = .03), whereas nurse documentation of education with family was associated with a significantly decreased risk of 30-day readmission (odds ratio, 0.46; 95% confidence interval, 0.24-0.90; P = .02). CONCLUSIONS: Involving caregivers in discharge education significantly reduced 30-day readmission rates for patients with HF and cognitive impairment. The Readmission Risk Score was similar between patients older than 70 years with and without cognitive impairment. We have hypothesis-generating evidence that identification of cognitive impairment and targeted caregiver engagement by nurses may be critical in the reduction of readmission rates for older patients with HF.

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Cultures of volunteer care? A comparative study of Australia and Denmark

This article seeks to understand two puzzling findings from a comparative study of volunteer care work: that volunteers in Denmark are perceived to be cost-adding, while volunteers in Australia are perceived to be cost-saving; and that volunteers in Australia are perceived to be better than paid workers, while volunteers in Denmark are considered second-best to paid workers. Using a 'cultures of care' framework, this article explores whether these articulations reflect on culturally determined care ideals. The findings suggest that different cultures of care exist. Differences are explained by the development of the two welfare states.

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Associations between care network types and psychological well-being among Dutch older adults

This study examines the mechanisms underlying the association between care network types and psychological well-being. Care recipients in the 2015/16 wave of the Longitudinal Aging Study Amsterdam (<i>N</i> = 607) reported on the structural (size and composition) and functional features of care network types (satisfaction, feeling in control of care and care attitudes). Those in a mixed care network reported the highest depressive symptoms, while those in a spousal care network and a privately paid care network reported the lowest. The importance of being in control of care interacts with care network type on well-being. The results corroborate that both informal and formal caregivers need to help older persons to remain in control of care.

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Covid-19 pandemic: 4.5 million become unpaid carers in a matter of weeks

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness. Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic. Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

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Innovating Long-Term Care Provision in Mediterranean Welfare States: A Comparison Between Italy and Israel

Social innovations in long-term care (LTC) may be useful in more effective responses to the challenges of population aging for Western societies. One of the most investigated aspects in this regard is the role of family/informal care and strategies to improve its integration into the formal care system, yielding a more holistic care approach that may enhance opportunities for aging in place. This article reports the findings of a comparative research focusing on the Italian and Israeli LTC systems as representative of the Mediterranean "family-based" care model. To analyze the innovative solutions that have been adopted or are needed to improve LTC provision in these two contexts, focus groups and expert interviews have been carried out in both countries to identify the most relevant challenges and responses to them and to highlight promising policies and strategies to be adopted or up-scaled in the future. These include multidisciplinary case and care management, a stronger connection between prevention and LTC provision, and more systematic recognition of the role and limits of informal caregivers' contributions.

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Informal Caregiver Burden and Benefits and Older Adult Mortality: A Survival Analysis

Objective: Informal caregivers are crucial to maintaining older adults' health, but few studies examine how caregiving receipt is associated with older person longevity. In a nationally representative sample, we prospectively explore whether and how having an informal caregiver is associated with older adult overall mortality, and how caregivers' burden and benefits perceptions relate to care recipient mortality.; Methods: We match six National Health and Aging Trends Study waves (2011-2016) with 2011 National Study of Caregiving data, conducting survival analysis on 7,369 older adults and 1,327 older adult-informal caregiver dyads.; Results: Having an informal caregiver is associated with 36% (p<0.001) higher mortality risk over 6-year follow-up, adjusting for demographic, economic and health factors. Older adults whose caregivers perceive only burden have 38% higher (p<0.05) mortality risk than those with caregivers reporting neither burden nor benefits. This risk is reduced from 38% higher to 5% higher (p<0.001) for older adults with caregivers reporting benefits alongside burden, compared to those with caregivers reporting neither perception.; Discussion: Having a caregiver may signal impending decline beyond known mortality factors. However, interventions to increase caregivers' benefit perceptions and reduce their burden may decrease mortality risk for older adults with declining health and functional ability.

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Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence

Purpose: To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home.; Methods: We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base.; Results: Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model.; Conclusions: Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home.; Trial Registration: PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).

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Can Family Caregivers Provide Life Review to Reduce Depression in Older Adults With Dementia?

Life review (LR) therapy has received considerable support as an effective treatment for depression among older adults. Researchers believe that providing LR does not require extensive training and can be done by family members who are not psychiatric professionals. If so, then training family caregivers to provide LR is a potential strategy for alleviating the shortage of resources for treating depression among the growing population of older adults experiencing depression. A pilot study that explored the feasibility of that strategy had mixed results. Seventeen (89%) of 19 caregiver–care recipient dyads completed the current study, and caregivers provided the LR with self-reported fidelity. However, there was lack of statistically significant improvement in this convenience sample. Implications are provided for future assessments of this strategy with a larger study of caregiver and care recipient dyads. 

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Stroke Survivor and Family Caregiver Reports of Caregiver Engagement in Stroke Care

Purpose: The aim of the study was to identify areas of caregiver engagement in stroke care as viewed by stroke survivors and family caregivers.; Design: Interviews with stroke survivor/caregiver dyads (N = 71) from a population-based study of incident stroke.; Methods: We interviewed stroke survivors and caregivers about caregiver involvement at multiple stages of stroke care. We assessed similarities and differences between stroke survivor and caregiver reports and analyzed responses to open-ended questions.; Findings: Stroke survivor and caregiver reports of engagement were highly correlated (r = .89), although caregivers reported higher involvement. Open-ended comments suggested that, in about 25% of cases, stroke survivors and caregivers agreed that caregiver engagement led to major improvements in stroke survivor care, most commonly during onset of symptoms.; Conclusions: Stroke survivors and caregivers report significant and impactful caregiver engagement throughout the course of stroke.; Clinical Relevance: Clinicians may enhance stroke care by recognizing and facilitating caregiver efforts across all phases of stroke care.

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Is There a Role for Informal Caregivers in the Management of Diabetic Foot Ulcers? A Narrative Review

Successful management of diabetic foot ulceration (DFU) is crucial for preventing long-term morbidity and lowering risk of amputations. This can be achieved with a multifaceted approach involving a multidisciplinary team, with the patient at the centre. However, not all healthcare setups enable this, and the rate of lower limb amputations continues to rise. It is therefore time to consider new approaches to diabetic foot care, capitalising on engagement from patients in self-management while supported by their informal caregivers (ICGs) to help improve outcome. The role of ICGs in DFU care has the potential to make a significant difference in outcome, yet this resource remains, in most cases, underutilised. Limited research has been conducted in this area to reveal the true impact on patient outcomes and the caregivers themselves. This narrative review aims to explore how ICGs can benefit DFU management with applicability to different healthcare setups while benefiting from established experience in the care of other chronic health conditions.

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Effect of the Tailored, Family-Involved Hospital Elder Life Program on Postoperative Delirium and Function in Older Adults: A Randomized Clinical Trial

Importance: Postoperative delirium (POD) is a common condition for older adults, contributing to their functional decline.; Objective: To investigate the effectiveness of the Tailored, Family-Involved Hospital Elder Life Program (t-HELP) for preventing POD and functional decline in older patients after a noncardiac surgical procedure.; Design, Setting, and Participants: A 2-arm, parallel-group, single-blind, cluster randomized clinical trial was conducted from August 24, 2015, to February 28, 2016, on 6 surgical floors (gastric, colorectal, pancreatic, biliary, thoracic, and thyroid) of West China Hospital in Chengdu, China. Eligible participants (n = 281) admitted to each of the 6 surgical floors were randomized into a nursing unit providing t-HELP (intervention group) or a nursing unit providing usual care (control group). All randomized patients were included in the intention-to-treat analyses for the primary outcome of POD incidence. Statistical analysis was performed from April 3, 2016, to December 30, 2017.; Interventions: In addition to receiving usual care, all participants in the intervention group received the t-HELP protocols, which addressed each patient's risk factor profile. Besides nursing professionals, family members and paid caregivers were involved in the delivery of many of the program interventions.; Main Outcomes and Measures: The primary outcome was the incidence of POD, evaluated with the Confusion Assessment Method. Secondary outcomes included the pattern of functional and cognitive changes (activities of daily living [ADLs], instrumental activities of daily living [IADLs], Short Portable Mental Status Questionnaire [SPMSQ]) from hospital admission to 30 days after discharge, and the length of hospital stay (LOS).; Results: Of the 475 patients screened for eligibility, 281 (171 [60.9%] male, mean [SD] age 74.7 [5.2] years) were enrolled and randomized to receive t-HELP (n = 152) or usual care (n = 129). Postoperative delirium occurred in 4 participants (2.6%) in the intervention group and in 25 (19.4%) in the control group, with a relative risk of 0.14 (95% CI, 0.05-0.38). The number needed to treat to prevent 1 case of POD was 5.9 (95% CI, 4.2-11.1). Participants in the intervention group compared with the control group showed less decline in physical function (median [interquartile range] for ADLs: -5 [-10 to 0] vs -20 [-30 to -10]; P < .001; for IADLs: -2 [-2 to 0] vs -4 [-4 to -2]; P < .001) and cognitive function (for the SPMSQ level: 1 [0.8%] vs 8 [7.0%]; P = .009) at discharge, as well as shorter mean (SD) LOS (12.15 [3.78] days vs 16.41 [4.69] days; P < .001).; Conclusions and Relevance: The findings suggest that t-HELP, with family involvement at its core, is effective in reducing POD for older patients, maintaining or improving their physical and cognitive functions, and shortening the LOS. The results of this t-HELP trial may improve generalizability and increase the implementation of this program.; Trial Registration: Chinese Clinical Trial Registry Identifier: ChiCTR-POR-15006944.

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Economic valuation of informal care provided to people after a myocardial infarction in France

Background: The aim of this study was to estimate the mean cost per caregiver of informal care during the first year after myocardial infarction event in France.; Methods: We used the Handicap-Santé French survey carried out in 2008 to obtain data about MI survivors and their caregivers. After obtaining the total number of informal care hours provided by caregiver during the first year after MI event, we estimated the value of informal care using the proxy good method and the contingent valuation method.; Results: For MI people receiving informal care, an annual mean cost was estimated at €12,404 (SD = 13,012) with the proxy good method and €12,798 (SD = 13,425) with the contingent valuation method per caregiver during the first year after myocardial infarction event.; Conclusions: The present study suggests that informal care should be included more widely in economic evaluations in order not to underestimate the cost of diseases which induce disability.

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The care crisis in Spain: an analysis of the family care situation in mental health from a professional psychosocial perspective

The aim of this article is to investigate the importance of family care in mental health and identify the shortcomings of the Spanish model of health care for the mentally ill. The empirical process comprised three qualitative procedures involving 37 experts from different regions of Spain. In order to guarantee the rigor of the data, a social worker discussion group was set up to create an interview script. Interviews were then carried out with 22 professionals who take care of people with mental illness in various public facilities throughout the country. A second focal group met three times to validate the categorizations analyzed in the interviews. The results of the empirical process indicate a need to remodel the mental health care system, which can be described with reference to five critical characteristics: 1) a lack of financial and human resources for mental health, 2) a lack of effective coordination among all the institutions and authorities involved, 3) a lack of quality resources aimed at rehabilitation and social reintegration as alternatives to institutionalization, 4) a lack of integrated care, and 5) a lack of a common healthcare framework for all professional workers in all the regions. A remodeling of the system is necessary to enable the rehabilitation, recovery, empowerment and development of people with SMD and thus ease the burden and improve the quality of life of family caregivers.

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Non-spouse companions accompanying older adults to medical visits: a qualitative analysis

Background Medical Visit Companions (MVCs) are encouraged for older adults' routine medical encounters. Little data exist on the experiences and contributions of non-spouse companions for the growing population of older adults without a living spouse. Methods We conducted six focus groups with forty non-spouse MVCs identified through churches in Baltimore, Maryland. Thematic analysis was used to identify key issues before the visit, during the visit itself, after the visit, and in the overall companion experience. Results MVCs described their experiences positively but also highlighted many challenges related to the role that extended far beyond the visit itself. These included scheduling, transportation, communication, and coordination of care expectations. Conclusion Our increasingly complex healthcare system can be challenging for older adults to navigate successfully. The diverse nature of tasks performed by companions in this study highlight the many benefits of having a companion accompany older patients to medical visits. The positive experience of the companions studied and their willingness to continue their role in the future highlights the untapped potential for increased social facilitation to improve the quality of healthcare visits and achieve patient-centered care for all older patients.

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Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study

Objectives: The capability to 'live well' in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver's perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life. Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver's perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia. Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (-1.98; 95% CI: -2.89, -1.07), high perceived social restrictions (-2.04; 95% CI: -2.94, -1.14) and low caregiving competence (-2.01; 95% CI: -2.95, -1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia. Conclusion: The findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers.

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Changes of family structure and treatment status of people with severe mental illness in rural China: a comparative study from 1994 to 2015

Background Little is known about the relationship between changes of family structure for people with severe mental illness (SMI) and treatment status of SMI during a period of sustained rapid socioeconomic development. This study aimed to explore the relationship between changes of family structure and treatment status of people with SMI in a 21-year longitudinal study in a rural area of China. Methods Epidemiological surveys of mental disorders were conducted in May, 1994, and October, 2015, in the same six townships (total population 170 174 in 2015) in Xinjin county, Chengdu, which is a representative middle-income rural county in southwest China. The six townships were randomly selected from all 12 townships of Xinjin county in 1994. The surveys consisted of two steps: (1) screening procedures for psychosis (face-to-face interviews with the head of each household together with key informant interviews), household by household; and (2) psychiatric interviews of people aged 15 years and older, to identify those with SMI (including schizophrenia, bipolar disorders, and major depressive disorder) according to the International Classification of Mental and Behavioural Disorders-10 (ICD-10) criteria. The two surveys were approved by the university human research ethics committees. Findings The number of people aged 15 years and older who were identified to have SMI was 711 and 1042 in 1994 and 2015, respectively. The mean number of family members was significantly lower in 2015 (3·0 [SD 1·5]) than in 1994 (3·4 [1·5], p<0·0001). Compared with people with SMI in 1994, those with SMI in 2015 had a significantly higher rate of living alone (13·7% vs 9·9%, p<0·013) and without caregivers (15·6% vs 8·4%, p<0·0001). There was a significantly lower rate of parents as caregivers in 2015 than in 1994 (13·5% vs 17·9%, p<0·011). The rate of low family economic status (less than the population mean) for people with SMI was significantly higher in 2015 than in 1994 (p<0·0001). Fewer family members (included in the same family hukou) was significantly associated with low family economic status (p=0·023), and low family economic status was significantly associated with poor treatment status (p=0·015). Interpretation The family structure and status of people with SMI has changed markedly during the rapid socioeconomic development from 1994 to 2015 in rural China. Fewer family members, fewer family caregivers and relative poverty have gradually become major challenges for families who care for people with SMI. How to improve care for people with SMI should be important if targets for Healthy China 2030 are to be met. Community mental health care, the precise poverty alleviation strategy, and the culture-specific family intervention programme should be crucial for comprehensive community mental health care and for improvement of the treatment and recovery of people with SMI in the community. Funding The survey in 1994 was supported in part by the China Medical Board of New York (92-557). The survey in 2015 was supported in part by the Seed Funding Programme for Basic Research (2014–2016), Seed Funding Programme for Applied Research (2014–2016), Contemporary China Strategic Research Theme (2014–2016), Small Project Funding (2014–2016), and Mental Health Research in Chengdu, China (department matching fund, 2015–2017).

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What do relatives value most in end-of-lie care for people with dementia?

Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.

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Challenges for psychosocial rehabilitation services in the Lisbon Metropolitan Area: A qualitative approach

In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.

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Caring for the informal cancer caregiver

PURPOSE OF REVIEW: Informal cancer caregivers play a vital role in the physical, functional, and emotional well being of cancer patients. However, the majority of informal caregivers are not prepared for their caregiving role. We reviewed and synthesized the recent literature (last 18 months) and focused on research in the following understudied areas: technology-driven interventions for informal caregivers; informal caregivers of older adults with cancer; interrelationship between informal caregiver and dyadic outcomes; and research priorities and guidelines to improve informal caregiver support. RECENT FINDINGS: Studies focused on technology-driven informal caregiver interventions, with evidence of good feasibility and acceptability with benefits for burden and quality of life (QOL). Studies also focused on QOL for caregivers of older adults with cancer. Finally, research priorities and clinical guidelines were established through Delphi survey studies. SUMMARY: Despite the substantial evidence on informal cancer caregiving, more research is needed to further characterize caregivers at high risk for burden, explicate interrelationships between caregiver/patient outcomes, and test innovative and scalable interventions. Studies are also needed to understand the specific needs of informal caregivers in cancer surgery, an understudied treatment population.

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The caregiving dyad: Do caregivers’ appraisals of caregiving matter for care recipients’ health?

Caregiving experiences matter for caregivers’ own wellbeing, but few studies link caregivers’ burden and benefit perceptions with recipient outcomes. Following the stress process model, I prospectively explore how caregivers’ experiences shape recipients’ mental health. I match US National Health and Aging Trends Study and National Study of Caregivers, employing logistic regression on 781 older adult-informal caregiver dyads. I examine how caregivers’ appraisals shape recipients’ subsequent depression and anxiety, with caregiver mental health and recipient unmet care need as key covariates. Recipients receiving care from caregivers reporting predominantly benefits are less likely to become depressed than counterparts receiving care from persons reporting predominantly burden. Recipients receiving care from persons reporting benefits even alongside low or moderate burden are also less likely to become anxious. Recipient unmet care need, but not caregiver mental health, is associated with recipient mental health. Improving caregiver conditions may have benefits for both dyad members. 

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Comparing Assessments of Physical Functional Independence in Older Adults with Mobility Limitations

Objectives The aims of the study were (1) to assess the agreement and correlation between self-reported functional independence and observations of family caregivers in a heterogeneous population of community-dwelling older adults with disabilities and (2) to determine how self-reports and caregiver reports correlate with evaluator rated functional independence over time. Design Data were drawn from a larger, randomized controlled trial examining the effects of a caregiver-inclusive intervention on outcomes of care recipients and their family caregivers. Functional independence measures were obtained using a self-report version of the Functional Independence Measure (care recipient self-reported Functional Independence Measure, caregiver self-reported Functional Independence Measure) and the Functional Autonomy Measurement System (evaluator perspective). They were administered at baseline (preintervention) and after the intervention at 6, 22, and 58 wks. Results Bivariate correlation analyses of 90 dyads consisting of older care recipients and their family caregivers reported moderate to very strong correlations between the three functional independence measures across all time points (rS = 0.45-0.91, P &lt; 0.01). Bland-Altman analyses revealed a small systematic bias between care recipient and caregiver assessments of functional independence, with participants reporting higher scores across all time points (mean difference = 2.00-2.97). Conclusions There is substantial consistency among the self-assessed, caregiver-assessed, and evaluator assessed functional independence of older adults. Caregivers may be used as proxies for community-dwelling older adults without severe cognitive impairments with functional limitations. 

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Facilitators and Barriers to Adoption of a Healthy Diet in Survivors of Colorectal Cancer

Purpose: Adherence to dietary guidelines and consumption of a high-quality diet are essential to rebuild strength and to decrease tumor recurrence and mortality in patients with colorectal cancer. We examined the associations of the diet quality of patients who have colorectal cancer with the characteristics of the patients and their families, the patient's perceived barriers to following the diet, and the family's attempts to change the diet. Design: A cross-sectional study design was employed. Patients with colorectal cancer were recruited from National University Hospitals in South Korea. Enrolled patients were over 19 years old. Enrolled relatives served as the primary caregivers of the patients. Methods: A total of 216 patients who had colorectal cancer and their family caregivers were enrolled. We assessed patients' diet quality, their perceived barriers to following the dietary plan, and family caregivers' attempts to improve diet quality. Findings: Patients with colorectal cancer were less likely to have healthy eating habits if they perceived barriers to the recommended dietary plan, and more likely to have healthy eating habits if they had family caregivers who attempted to change their own dietary habits. Conclusions: Strategies that target patients' perceived barriers to following a healthy diet and that encourage family members to facilitate the adoption of a healthy diet can be integrated into the treatment plan of patients with colorectal cancer. Clinical Relevance: The results can be used as evidence for promoting the notion that diet interventions for patients with colorectal cancer focus on the patient-family dyad, which support overall quality of care in oncology care hospitals.

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The impacts of family involvement on general hospital care experiences for people living with dementia: An ethnographic study

Background: A quarter of people in general hospitals have dementia. Limited existing studies suggest that hospital care experiences of people living with dementia, and the involvement of their families in care, may be suboptimal. Objectives: The objectives of this study were to explore how family involvement impacts upon experiences of hospital care for people living with dementia. Design: A qualitative ethnographic study. Methods: Ethnographic data were collected from two care of older people general hospital wards. Data were collected via observations, conversations and interviews with people living with dementia, families and staff. In total, 400 hours of observation and 46 interviews were conducted across two 7–9 month periods. Results: People living with dementia could experience a lack of connection on multiple levels - from pre-hospital life as well as life on the wards – where they could spend long periods of time without interacting with anyone. There was great variation in the degree to which staff used opportunities to involve families in improving connections and care. When used, the knowledge and expertise of families played a crucial role in facilitating more meaningful interactions, demonstrating how person-centred connections and care are possible in busy hospital settings. Despite such benefits, the involvement of families and their knowledge was not routine. Care was required to ensure that family involvement did not override the needs and wishes of people living with dementia. Conclusions: This study demonstrates the benefits of involving families and their knowledge in care, advocating for family involvement, alongside the involvement of people living with dementia, to become a more routine component of hospital care.

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The relationship between formal and informal care among Chinese older adults: based on the 2014 CLHLS dataset

Background The substitute or complementary effect of formal care on informal care service used by the elderly has been tested in Western countries. However, this effect is excluded from the discussion in the Chinese context. The identification of the relationship between informal care and formal care may imply different directions in policy-making. Thus, this study contributes to understanding the relationship between informal care and formal care among Chinese older adults. Methods Using the dataset from the Chinese Longitudinal Healthy Longevity Survey (CLHLS) in 2014, this study uses regression models and instrumental variable (IV) method to examine the impact of formal care on informal care. Results The results primarily show that formal care does not substitute informal care among Chinese older adults. In fact, formal care is a supplement to informal care in China. Conclusion It is expected that informal care will become less available in the future in China. Thus, policymakers should be concerned about the underdevelopment of formal care for the elderly in China

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Investigating the relationship between formal and informal care: An application using panel data for people living together

There is limited evidence on the relationship between formal and informal care using panel data in a U.K. setting and focused specifically on people living together (co-residents). Using all 18 waves of the British Household Panel Survey (1991-2009), we analyse the effect of informal care given by co-residents on the use of formal home care and health care services more generally. To account for endogeneity, we estimate models using random effects instrumental variable regression using the number of daughters as a source of exogenous variation. We find that a 10% increase in the monthly provision of informal care hours decreases the probability of using home help (formal home care) by 1.02 percentage points (p < .05), equivalent to a 15.62% relative reduction. This effect was larger for home help provided by the state (β = -.117) compared with non-state home help (β = -.044). These results provide evidence that significant increases in the supply of informal care would reduce the demand for home-help provision.

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Intracranial Tumors: A nurse-led intervention for educating and supporting patients and their caregivers

BACKGROUND: Behavioral symptoms among postoperative patients with intracranial tumors and distress among caregivers are common. OBJECTIVES: This article aimed to assess the effectiveness of a brief nurse-led intervention on behavioral symptoms of postoperative patients with intracranial tumors and distress of their caregivers. METHODS: A randomized controlled trial was conducted on 80 patients with intracranial tumors and their family caregivers in a tertiary care institute in India. A brief nurse-led intervention was provided in the form of individual counseling, and a pamphlet was given to patients and caregivers in the experimental group at the time of discharge. Behavioral symptoms of patients and distress of caregivers were assessed. FINDINGS: Patients in the experimental group had significantly fewer behavioral symptoms and less severity of behavioral symptoms as compared to the control group. Caregivers in the experimental group had significantly less severity of distress as compared to the control group. 

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Caregiver Care

Eighty percent of adults requiring long-term care currently live at home in the community, and unpaid family caregivers provide 90% of their care. Family caregivers serve as a critical extension of the U.S. health care system, and the demand for family caregivers is expected to increase during the next few decades. Caring for loved ones is associated with several benefits, including personal fulfillment; however, caregiving is also associated with physical, psychological, and financial burdens. Family physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of the caregiver or the care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local elder care agencies, websites, and respite care. Psychoeducation, skills training, and therapeutic counseling interventions for caregivers have shown small to moderate success by decreasing caregiver burden and increasing caregiver quality of life. Additional research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Support and anticipatory guidance for the caregiver is especially helpful during care transitions and at the care recipient's end of life.

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Does informal care impact utilisation of home-based formal care services among end-of-life patients? A decade of evidence from Ontario, Canada

Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home-based end-of-life care programme in Ontario, Canada from 2005 to 2016, we build a two-part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home-based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home-based end-of-life patients. Decision-makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.

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Active involvement of family members in postoperative care after esophageal or pancreatic resection: A feasibility study

Background: Active involvement of relatives has the potential to improve postoperative patient outcomes by prevention of complications sensitive to basic care and unplanned readmissions. The aim of this study was to assess the feasibility of a program in which relatives participated in postoperative care.; Methods: A pragmatic feasibility trial conducted at the surgical ward of a University hospital in the Netherlands. Patients undergoing esophageal or pancreatic resection with a relative who was willing and able to participate formed the intervention group (n = 20). A control group (n = 20) received usual postoperative care. The program consisted of the following: (1) information; (2) shared goal setting; (3) task-oriented training; (4) participation in basic care, focusing on mobilization, breathing exercises, cognitive activities and oral hygiene; (5) presence of relatives during ward rounds; and (6) rooming-in. Feasibility criteria were adherence to basic care, caregiver burden, and satisfaction of patients, family, and healthcare professionals.; Results: All participants completed the program. Patients in the intervention group mobilized more (estimated difference for walking 170 meters per day, P = .037, and for sitting 109 minutes per day, P < .001), and showed more adherence to breathing exercises (estimated difference per day 1.4, P = .003), oral hygiene (estimated difference 1.52, P = .001), and cognitive activities (estimated difference 2.6, P < .001). Relatives'Care-Related Quality of Life instrument score did not deteriorate over time (P = .64); 96% of relatives would recommend the program and 92% felt better prepared for discharge. Patients in the intervention group were more satisfied with hospital admission. Healthcare professionals valued the program positively.; Conclusion: This program is feasible and is positively appreciated by patients, family, and healthcare professionals. Patients following the program showed more adherence to basic care activities.

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Homebound Status and the Critical Role of Caregiving Support

The homebound population relies on both paid and family caregivers to meet their complex care needs. In order to examine the association between intensity of caregiving support and leaving the home, we identified a population of community-dwelling, homebound Medicare beneficiaries age ≥65 (n = 1,852) enrolled in the 2015 National Health and Aging Trends Study and measured the support they received from paid and family caregivers. Those who had ≥20 h of caregiving support per week had 50% less odds of being "exclusively homebound" (rarely or never leave home) (OR 0.56, p < .01). Policies that facilitate increased support for family caregivers and better access to paid caregivers may allow homebound individuals who would otherwise be isolated at home to utilize existing community-based long-term care services and supports.

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Well‐being loss in informal care for the elderly people: Empirical study from China national baseline CHARLS

Introduction: Well‐being is an important component of health, while informal care plays a vital role in daily care of the elderly. However, the effects of informal care on the well‐being of the elderly remain unclear. This study was aimed to estimate such effects, in which well‐being was measured by 2 subjective indicators: happiness and life satisfaction. Methods: Potential endogeneity was purified using instrumental variables. Data were collected from national baseline China Health and Retirement Longitudinal Study (CHARLS). Results: Receiving informal care would decrease the elderly's happiness score and life satisfaction score significantly. The health produced from informal care cannot offset the health depreciation caused by aging. Discussion To improve the well‐being of the elderly, caregivers have more to do and policymakers can design designated care policies based on our results.

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Work-Related Opportunity Costs Of Providing Unpaid Family Care In 2013 And 2050

Older Americans living in the community who need help with functional limitations overwhelmingly rely on unpaid care, which is often provided by working-age family members. This study assessed the impact of unpaid family caregiving on the likelihood of working and hours worked for caregivers and calculated the related cost of forgone earnings in 2013 and 2050. The current economic cost is about $67 billion, which by midcentury will likely double to $132-$147 billion, fueled primarily by the growth of the disabled older population and the increased share of better-educated caregivers. Average opportunity cost per caregiver will likely increase by 8-20 percent and per US resident by 54-72 percent. Future policy action could benefit from accounting fully for the economic costs in addition to the benefits of unpaid caregiving, which would help better define the scope and size of programs needed to support caregivers. 

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Older persons’ experiences of adapting to daily life at home after hospital discharge: a qualitative metasummary

Background Researchers have shown that hospitalisation can decrease older persons’ ability to manage life at home after hospital discharge. Inadequate practices of discharge can be associated with adverse outcomes and an increased risk of readmission. This review systematically summarises qualitative findings portraying older persons’ experiences adapting to daily life at home after hospital discharge. Methods A metasummary of qualitative findings using Sandelowski and Barroso’s method. Data from 13 studies are included, following specific selection criteria, and categorised into four main themes. Results Four main themes emerged from the material: (1) Experiencing an insecure and unsafe transition, (2) settling into a new situation at home, (3) what would I do without my informal caregiver? and (4) experience of a paternalistic medical model. Conclusions The results emphasise the importance of assessment and planning, information and education, preparation of the home environment, the involvement of the older person and caregivers and supporting self-management in the discharge and follow-up care processes at home. Better communication between older persons, hospital providers and home care providers is needed to improve the coordination of care and facilitate recovery at home. The organisational structure may need to be redefined and reorganised to secure continuity of care and the wellbeing of older persons in transitional care situations.

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Family intervention improves outcomes for patients with delirium: Systematic review and meta-analysis

Objective: To determine if family caregiver involvement in interventions with patients with delirium improves patient outcomes.; Methods: A search of three databases (Medline-Ovid, CINAHL and Embase) was conducted. Eligibility criteria included adult patients and involvement of family caregivers in any delirium intervention. Data were extracted from each study (determined by PEDro scale) using a customised form. A meta-analysis was undertaken which compared the length of hospital stay and duration of delirium. PROSPERO registration number is CRD42017077650.; Results: Five studies involving 505 participants published over a 5-year period were suitable for inclusion. Low-level evidence demonstrated family caregiver involvement may reduce caregiver's anxiety and hospital staff viewed administration of education to family caregivers as efficient. Meta-analysis suggested family interventions reduce length of hospital stay for patients with delirium. It remains unclear if it affects the duration of delirium.; Conclusion: Family caregivers providing interventions to patients with delirium can improve patient outcomes.

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Out-of-home informal support important for medication adherence, diabetes distress, hemoglobin A1c among adults with type 2 diabetes

Adults with type 2 diabetes mellitus (T2DM) often receive self-management support from adult children, siblings or close friends residing outside of their home. However, the role of out-of-home support in patients’ self-management and well-being is unclear. Patients (N = 313) with HbA1c > 7.5% were recruited from community primary care clinics for a mobile health intervention trial and identified an out-of-home informal support person, herein called a CarePartner: 38% also had an in-home supporter. We tested cross-sectional adjusted associations between CarePartner relationship characteristics and patients’ self-management, diabetes distress, and HbA1c and whether having an in-home supporter modified these associations. Greater CarePartner closeness was associated with a greater odds of perfect medication adherence (AOR = 1.19, p = .029), more fruit/vegetable intake (β = 0.14, p = .018), and lower diabetes distress (β = − 0.14, p = .012). More frequent CarePartner contact was associated with better HbA1c among patients with an in-home supporter but with worse HbA1c among patients without an in-home supporter (interaction β = − 0.45, p = .005). Emotional closeness with a CarePartner may be important for supporting T2DM self-management and reducing diabetes distress. CarePartners may appropriately engage more frequently when patients with no in-home supporter have poorly controlled diabetes.

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Sociodemographic Characteristics and Preferences for Family (Informal) and Formal Caregiver Help With ADLs

The purpose of this article was to compare sociodemographic characteristics and various care preferences for family and formal caregivers help with activities of daily living (ADLs). The sample was 56,337 noninstutionalized U.S. civilian adults, 40 to 65 years of age. This is a cross-sectional study using secondary data from the National Health Interview Survey (NHIS)—2011 to 2014. Respondents’ sociodemographic characteristics and various care preferences for caregiver help with ADLs were analyzed. Subsequent analysis examined associations using adjusted multivariable logistic regression models. Preference for family caregivers help with ADLs was independently and significantly associated with race/ethnicity, age, gender, education, acculturation, and income. Future studies need to examine sociodemographic characteristics and caregiver preferences to tailor health care services for aging adults in the United States.

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Do Family Caregivers Offset Healthcare Costs for Older Adults? A Mapping Review on the Costs of Care for Older Adults With Versus Without Caregivers

Background and Objectives: Older adults face significant long-term care and health care costs. But some of these costs can potentially be offset through family caregivers who may serve as substitutes for formal care or directly improve the care recipient’s health and reduce health care utilization and expenditures. This article reviews the current literature to determine whether it is possible through existing work to compare the costs of care for individuals with versus without family caregivers and, if not, where the data, measurement, and other methodological challenges lie. Research Design and Methods: A mapping review of published works containing information on health care utilization and expenditures and caregiving was conducted. A narrative approach was used to review and identify methodological challenges in the literature. Results: Our review identified 47 articles that met our criteria and had information on caregiving and health care costs or utilization. Although findings were mixed, for the most part, having a family caregiver was associated with reduced health care utilization and a decreased risk of institutionalization however, the precise difference in health care expenditures for individuals with caregivers compared to those without was rarely examined, and findings were inconsistent across articles reviewed.  Discussion and Implications: The number of family caregivers providing care to loved ones is expected to grow with the aging of the Baby Boomers. Various programs and policies have been proposed to support these caregivers, but they could be costly. These costs can potentially be offset if family caregivers reduce health care spending. More research is needed, however, to quantify the savings stemming from family caregiving.

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Effect of family education program on cognitive impairment, anxiety, and depression in persons who have had a stroke: A randomized, controlled study

People who have had a stroke face high risks of cognitive impairment, anxiety, and depression. Health education for family members contributes to better outcomes in various diseases, but the effects of health education on family members of people who have had a stroke are unclear. The aim of the present study was to evaluate the effects of the family member education program (FMEP) on cognitive impairment, anxiety, and depression in persons who have had a stroke. In total, 144 persons who experienced a stroke were randomly allocated to the FMEP group or control group (1:1 ratio). In the FMEP group, the FMEP and conventional treatment were provided, while in control group only conventional treatment was provided. The increase in the Montreal Cognitive Assessment (MOCA) score from baseline to 12 months (M12 – baseline) in the FMEP group was higher compared with the control group, and the FMEP led to a decreased cognitive impairment rate (MOCA score ≤26) after 12 months compared to the control group. Changes in the Hospital Anxiety and Depression Scale anxiety and depression score (M12 – baseline) decreased in the FMEP group compared with the control group. Fewer participants with depression and a lower depression grade were observed in the FMEP group compared with the control group. The FMEP could reduce cognitive impairment, anxiety, and depression in persons who have had a stroke.

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Family‐focused recovery: Perspectives from individuals with a mental illness

Family members often provide significant support and care to their relative who has a mental illness. Nonetheless, how family members might be part of an individual's mental health recovery journey is rarely considered. The aim of this study was to investigate how those with a mental illness define 'family' and the role of family (if any) in their recovery journey. A qualitative approach was used. Purposive sampling and snowballing were used to recruit and conduct semi‐structured interviews with 12 people who have been diagnosed with a severe mental illness. Participants defined family in various ways with some being very inclusive and others more selective. There was acknowledgement that family contributed to the individual's recovery in a myriad of ways, although the need for boundaries was stressed. While no participants suggested that their family might become active treatment facilitators, they did want clinicians to support them in talking to their family about their mental illness. A multifaceted approach is needed to promote family‐focused recovery practice. The needs of different family members and the needs of the family as a group should be considered concurrently alongside the individual's needs in their recovery plan. Individual and relational components of recovery should be embedded in policy and clinical practice.

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Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease

Background: Elderly end stage kidney patients face a decision concerning whether or not to initiate dialysis. In Asia, this decision is highly influenced by family caregivers. The objective of this paper was to understand patients' experience with and preferences for family involvement in treatment decisions, and via a series of hypothetical vignettes, to identify whether there was discordance in treatment preferences between patients and their caregivers, and how any potential conflicts were reconciled.; Methods: We conducted a survey with 151 elderly (aged ≥65) chronic kidney disease patients and their caregivers at outpatient renal clinics. The survey asked, when making treatment decisions, whom they wish makes the final decisions (i.e., preference) and who usually makes the final decisions (i.e., experience). The survey also presented a series of choice vignettes for managing patient's condition and asked respondents to choose between two hypothetical treatment profiles in each vignette. Patients and caregivers were first interviewed separately in tandem, and then were brought together to choose a treatment jointly for vignettes where the initial treatment choice differed within the dyad. We used multivariate regressions to investigate the predictors of discordance and reconciliation.; Results: We found that most (51%) patients preferred and experienced (64%) significant involvement from caregivers. However, 38% of patients preferred to make final decisions alone but only 27% of patients did. In the hypothetical vignettes, caregivers chose the more intensive option (i.e., dialysis) more than patients did (26% vs 19%; p < 0.01). Overall, 44% of the dyads had discordance in at least 3 vignettes, and the odds of discordance within patient-caregiver dyads was higher when caregivers chose dialysis or treatment with the higher cost (p < 0.01). In half the cases, discordance resolved in the patients' favor, and this was more likely to be the case if the patient was employed and wanted to be in charge of final decisions (p < 0.01).; Conclusions: Our results highlight the important role of caregivers in decision-making but also the potential for them to overstep. Clinicians should be aware of this challenge and identify strategies that minimize the chances that patients may receive treatments not consistent with their preferences.

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Catastrophic financial effect of replacing informal care with formal care: a study based on haematological neoplasms

Informal care is a substantial source of support for people with cancer. However, various studies have predicted its disappearance in the near future. The aim of this study is to analyse the catastrophic effect resulting from the substitution of informal care with formal care in patients with blood cancer throughout the different stages of treatment. A total of 139 haematological neoplasm patients who underwent stem cell transplantation in Spain, completed a longitudinal questionnaire according to the three phases of treatment between 2012 and 2013. The economic value of informal care was estimated using proxy good, opportunity cost, and contingent valuation methods. Catastrophic health expenditure measures with thresholds ranging from 5 to 100% were used to value the financial burden derived from substitution. A total of 88.5% of patients reported having received informal care. In 85.37%, 80.49%, and 33.33% of households, more than 40% of their monthly income would have to be devoted to the replacement with formal care, with monthly amounts of €2105.22, €1790.86, and €1221.94 added to the 40% in the short, medium, and long-term, respectively (proxy good method, value = 9 €/h). Informal caregivers are a structural support for patients with blood cancer, assuming significant care time and societal costs. The substitution of informal care with formal care would be financially unaffordable by the families of people with blood cancer.

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Patients and informal caregivers' experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research

Objective: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers.; Design: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis.; Data Sources: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015.; Eligibility Criteria For Selecting Studies: Primary qualitative studies in English where participants were patients with lung cancer or COPD and/or their informal caregivers, aged >18 years that contain descriptions of experiences of interacting with health or social care in Europe, North America and Australia.; Results: We identified 127 articles with 1769 patients and 491 informal caregivers. Patients, informal caregivers and healthcare professionals (HCPs) acknowledged lung cancer's existential threat. Managing treatment workload was a priority in this condition, characterised by a short illness trajectory. Treatment workload was generally well supported by an immediacy of access to healthcare systems and a clear treatment pathway. Conversely, patients, informal caregivers and HCPs typically did not recognise or understand COPD. Treatment workload was balanced with the demands of everyday life throughout a characteristically long illness trajectory. Consequently, treatment workload was complicated by difficulties of access to, and navigation of, healthcare systems, and a fragmented treatment pathway. In both conditions, patients' capacity to manage workload was enhanced by the support of family and friends, peers and HCPs and diminished by illness/smoking-related stigma and social isolation.; Conclusion: This interpretative synthesis has affirmed significant differences in treatment workload between lung cancer and COPD. It has demonstrated the importance of the capacity patients have to manage their workload in both conditions. This suggests a workload which exceeds capacity may be a primary driver of treatment burden.; Prospero Registration Number: CRD42016048191.

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Family and Caregiver Spillover Effects in Cost-Utility Analyses of Alzheimer's Disease Interventions

Background and Objective: Alzheimer's disease or dementia can impose a significant burden on family and other informal caregivers. This study investigated how the inclusion of family/informal caregiver spillover effects in a cost-utility analysis may influence the reported value of Alzheimer's disease/dementia interventions. Methods: We used PubMed to identify Alzheimer's disease or dementia cost-utility analyses published from 1 January, 2000 to 31 March, 2018. We reviewed and abstracted information from each study using a two-reader consensus process. We investigated the frequency and methods in which family/caregiver spillover costs and health effects were incorporated into cost-utility analyses, and examined how their inclusion may influence the reported incremental cost-effectiveness ratios. Results: Of 63 Alzheimer's disease/dementia cost-utility analyses meeting inclusion criteria, 44 (70%) considered at least some family/caregiver spillover costs or health effects. Thirty-two studies incorporated spillover costs only, two incorporated spillover health effects only, and ten incorporated both. The most common approach for accounting for spillover was adding informal caregiving time costs to patient costs (n = 36) and adding informal caregiver quality-adjusted life-years to patient values (n = 7). In a subset of 33 incremental cost-effectiveness ratio pairs from 19 studies, incorporating spillover outcomes made incremental cost-effectiveness ratios more favorable (n = 15; 45%) or kept the intervention cost saving (n = 13; 39%) in most cases. In fewer cases, including spillover increased incremental cost-effectiveness ratios (n = 2; 6%), kept the intervention dominated [more costs/less quality-adjusted life-years] (n = 2; 6%), or changed incremental cost-effectiveness ratio from dominated to less cost/less quality-adjusted life-years (n = 1; 3%). In 11 cases (33%), adding spillover effects into analyses resulted in a lower incremental cost-effectiveness ratio that crossed a common cost-effectiveness threshold, which could have downstream implications for programs or policies that are adopted based on cost-effectiveness analysis results. Discussion: Most Alzheimer's disease/dementia cost-utility analyses incorporated spillover costs, often as caregiver time costs, but considered spillover health impacts less often. In about 85% of the analyses, including Alzheimer's disease/dementia spillover cost or health effects decreased incremental cost-effectiveness ratios or kept the intervention cost saving. The broader value of an Alzheimer's disease/dementia intervention to society may in some cases be underestimated without considering these spillover effects on family and informal caregivers.

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Reconstruction of Masculine Identities Through Caring Practices: The Experiences of Male Caregivers in Hong Kong

The purpose of this study was to explore from a gender perspective how masculinities might be reworked into identities of care through men taking on the role of family caregiver. A qualitative method was adopted for this research. Twenty Chinese men in Hong Kong who were the main caregivers in their families were invited for in-depth interviews to understand their views on caring and their experiences as caregivers. We identified four types of male caregiver: (a) conforming caregivers, (b) traditional caregivers, (c) transitional caregivers, and (d) transforming caregivers. Based on our findings, we argue that when men engage in caring, changes can occur in their perceptions of the value of care, their relationships with family members, and their male identities. The involvement of men in caring may lead to social change for men and transform gender relations.

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Economic Spillover Effects of Intensive Unpaid Caregiving

Background: Growing evidence has documented economic spillover effects experienced by intensive caregivers across the lifecycle. These spillover effects are rarely incorporated in economic analyses of health interventions. When these costs are captured, it is shown that commonly applied methods for valuing caregiver time may be underestimating the true opportunity costs of informal care. We explore how intensive caregiving is associated with economic outcomes for caregivers aged 18 years and older.; Methods: We used the cross-sectional 2013 RAND Survey of Military and Veteran Caregivers, a survey of 3876 caregivers and non-caregivers aged 18 years and older to conduct multivariable analyses and calculate average marginal effects, focusing on the association between intensive caregiving (i.e., providing ≥ 20 h of weekly care) and six economic outcomes: schooling, labor force participation, taking unpaid time off of work, cutting back work hours, quitting a job, and early retirement.; Results: Intensive caregivers are 13 percentage points (95% confidence interval [CI] 8-18) less likely to be employed than non-caregivers. Intensive caregivers are 3 percentage points (95% CI 0.5-5) more likely to cut back schooling, 6 percentage points (95% CI 2-10) more likely to take unpaid time off of work, 4 percentage points (95% CI 0.1-9) more likely to cut back work hours, 12 percentage points (95% CI 8-15) more likely to quit a job, and 5 percentage points (95% CI 2-7) more likely to retire early due to caregiving responsibilities relative to non-intensive caregivers.; Conclusions: Despite the difficulty of quantifying the true opportunity costs of informal care, policy makers and researchers need to understand these costs. The higher the opportunity costs of unpaid care provision, the less likely it is that caregivers will provide this care and the less economically attractive this 'free' source of care is from a societal perspective.

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The Monetary Value of Informal Care: Obtaining Pure Time Valuations Using a Discrete Choice Experiment

Background: Interventions in health care often not only have an effect on patients, but also on their informal caregivers. Caregiving can have a profound impact on the health and wellbeing of carers. Ignoring these spillovers in economic evaluations risks labelling interventions mistakenly as cost-effective, at the expense of informal caregivers. Objective: This paper investigates willingness-to-accept (WTA) values for an hour of informal care, corrected for positive and negative impacts of informal care, to facilitate the inclusion of informal care hours on the cost side of economic evaluations without double-counting spillover effects. Methods: A discrete choice experiment (DCE) was conducted among a representative sample of the adult population in the Netherlands (n = 552) in September 2011. An experimental design minimizing the D-error was used to construct choice sets with two unlabelled alternatives with the attributes 'hours caregiving', 'monetary compensation for caregiving' and seven impacts of caregiving. To operationalize the random utility model, we used a panel mixed multinomial logit (MMNL) parameter model. For calculation of WTA, we used both population-level parameters and individual-level parameters. Results: The mean WTA for an additional hour of informal care, corrected for positive and negative impacts of informal care, was €14.57. The signs of the coefficients were all in the expected directions. Conclusions: This study reports a preference-based monetary value for informal care, corrected for other impacts. This valuation facilitates the inclusion of informal care hours on the cost side in economic evaluations without double-counting any spillover effects included on the effects side. 

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Impact of the carer on length of hospital stay for mental health: Results from two Australian surveys

Informal carers play a vital role in supporting Australians living with a mental illness, including during the acute phases of illness; however, little is known about their impact on length of hospital stay. We aimed to investigate the impact of having a carer and of carer burden on length of hospital stay for mental health. Two Australian datasets were used. Data from the 2010 National Survey of High Impact Psychosis (n = 1825) were used to investigate the impact of having versus not having a carer on length of hospital stay for mental health. Data from the UQ Carer Survey 2016 (n = 105), a convenience sample of mental health carers, were used to investigate the impact of weekly hours of care (a measure of objective carer burden) on length of stay. Multiple logistic regression and correlation analyses were performed to investigate the association between carer status/burden and length of stay. Having a carer was associated with a significantly longer length of hospital stay; however, this relationship was no longer significant after adjusting for diagnosis, global functioning, depressive symptoms, deliberate self-harm, mental health outpatient contacts and type of admission. Weekly hours of care did not significantly impact on length of stay. Patients with carers had poorer functioning which may be related to longer stays. Our analysis was not able to look at subgroups of carers with different needs. Future work is required to determine other components of the admission and discharge process where having a carer is influential.

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Self-Care System for Family Caregivers of Cancer Patients Using Resonant Breathing with a Portable Home Device: A Randomized Open-Label Study

Background: Self-care systems for early-stage specialist palliative care for cancer patients and their family caregivers have received much attention recently. Resonant breathing is an established method for maximizing heart rate variability (HRV), but it has not been implemented for home self-care. Objective: We aimed to examine the usefulness and ease of implementation for family caregivers to administer resonant breathing using a portable device at home. Design: We divided caregivers into two groups—a home self-care group and a control group—and we conducted a randomized open-label study, with rate of change in HRV being the primary outcome. Setting/Subjects: We administered HRV biofeedback (HRV-BF) using resonant breathing to 54 family caregivers who felt burdened by their nursing care responsibilities. Results: Among the self-care group, 92.6% of participants completed the study in their homes; 28 days after intervention initiation, the resonant breathing implementation rate at home was 86.1%. There was an interaction between time course and grouping in our HRV comparisons: the change rate in the home self-care group was higher during HRV-BF than before HRV-BF. Conclusions: Because family caregivers in our study learned to quickly administer resonant breathing using a portable device at home, resonant breathing improved rapidly, along with autonomic nerve function and quality of life.

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The effect of a family intervention on primary caregivers psychological outcomes: Findings from the integrative literature review

Aims: This literature review examines the effectiveness of the family interventions (FIs) targeted at the primary caregivers of people diagnosed with schizophrenia on improving the knowledge level of schizophrenia and health‐related outcomes. Methods: A total of nine studies were reviewed from December 1999 to May 2017. The methods described by the Center for Reviews and Dissemination were used to guide this review. Results: The FIs showed consistent improvement in the knowledge level of schizophrenia among participants for various follow‐up intervals. In addition, FIs were found to be superior to treatment as usual in influencing health‐related outcomes. Conclusions: Implications of the findings for mental healthcare practice to include primary caregivers with the patient in the treatment process.

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Quantifying Family Spillover Effects in Economic Evaluations: Measurement and Valuation of Informal Care Time

Spillover effects on the welfare of family members may refer to caregiver health effects, informal care time costs, or both. This review focuses on methods that have been used to measure and value informal care time and makes suggestions for their appropriate use in cost-of-illness and cost-effectiveness analyses. It highlights the importance of methods to value informal care time that are independent of caregiver health effects in order to minimize double counting of spillover effects. Although the concept of including caregiver time costs in economic evaluations is not new, relatively few societal perspective cost-effectiveness analyses have included informal care, with the exception of dementia. This is due in part to challenges in measuring and valuing time costs. Analysts can collect information on time spent in informal care or can assess its impact in displacing other time use, notably time in paid employment. A key challenge is to ensure appropriate comparison groups that do not require informal care to be able to correctly estimate attributable informal care time or foregone market work. To value informal care time, analysts can use estimates of hourly earnings in either opportunity cost or replacement cost approaches. Researchers have used widely varying estimates of hourly earnings. Alternatively, stated-preference methods (i.e. contingent valuation, conjoint analysis) can be used to value the effect of informal care on utility, but this can entail double counting with health effects. Lack of consensus and standardization of methods makes it difficult to compare estimates of informal care costs. 

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How Much Is This Going to Cost? Inviting the Math Club to the Table

Projection models enable users to assess the costs and benefits of changes to long-term services and supports policies and to compare policy options, using a consistent set of underlying assumptions. Outlined are key challenges model developers face, including data limitations, difficulties anticipating potential behavioral responses, the need to assign appropriate benchmarks, the value of family care and intangibles like autonomy and quality of life, and grappling with uncertainty. The authors also detail substantive lessons learned about policy and describe modeling best practices, including sensitivity analyses. 

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How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

Aims Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. Methods Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. Findings Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. Conclusions These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

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Understanding the integration of family caregivers in delirium prevention care for hospitalized older adults: a case study protocol

Aim: To understand family caregiver involvement in delirium prevention care for older adults hospitalized for orthopedic surgery hospitals and family caregiver integration by nurses.; Design: Multiple-case study.; Methods: The model of Care Partner Engagement was selected as theoretical framework. Eight cases will comprise an older adult hospitalized a family caregiver and a ward nurse. They will be recruited with a non-probability sampling on two orthopedic surgery wards in two hospitals. Semi-structured interviews with participants will be audiotaped. Sociodemographic data will be collected. These data, researcher field notes and interview transcripts will be subjected to within- and across-case thematic analysis. Regional ethics committee approved the study protocol in August 2018.; Discussion: The study will allow surgical nursing teams to gain a better understanding of the issues and possibilities regarding family caregiver integration in delirium prevention care for older adults.; Impact: Integration of family caregivers in care to prevent older adults' delirium is a challenge for nurses. In practice, this study will allow to gain a better understanding of the integration of family caregivers in care to prevent older adults' delirium, the factors that influence it and the ways to improve it. In research, results will be used to develop an intervention whose aim would be a better integration of family caregivers into delirium prevention care that can be tested in the future. 

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The role of informal carers in the diagnostic process of heart failure: a secondary qualitative analysis

Background: Heart failure (HF) is a common clinical syndrome, particularly in older people, and symptoms can develop gradually. The aim of this study was to explore the role of informal carers in the HF diagnostic process.; Methods: Secondary analysis of qualitative interviews with 16 participants with a new diagnosis of HF. Original interviews were conducted in the participant's home, with carers present in some cases. Interview transcripts were re-analysed using the Framework Method for themes pertaining to informal carers and how they were involved in the diagnostic process.; Results: Informal carers often noticed symptoms, such as breathlessness, before participants. In some cases, carers colluded with participants in normalising symptoms but over time, when symptoms failed to resolve or got worse, they encouraged participants to seek medical help. Adult children of participants commonly initiated help-seeking behaviour. During the diagnostic process, carers coordinated participants' healthcare through advocacy and organisation. Carers were keen to be informed about the diagnosis, but both participants and carers struggled to understand some aspects of the term 'heart failure'.; Conclusions: Carers play a crucial role in HF diagnosis, particularly in initiating contact with healthcare services, and should be empowered to encourage people with HF symptoms to seek medical help. Improving public awareness of HF could mean informal carers are more likely to notice symptoms. The important role of carers in supporting the patient's route to diagnosis should be incorporated into future care pathways and explored in further research.

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Family Caregivers and the Decisions They Make

Kennedy talks about the importance of family caregivers. Among other things, making sure that family caregivers are prepared prior to discharge in understanding the family members diagnosis and what it means for ongoing care, how to provide care, and what changes signal the need for professional intervention.

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Meta-Analysis of Caregiver-Directed Psychosocial Interventions for Schizophrenia

With the recent movement toward a personal-recovery paradigm to treat schizophrenia, the locus of mental health care delivery has shifted toward community-based care. Family caregivers comprise a substantial component of that community, and are often providing care for longer periods, but often have no formal training or support. Caregiver-directed psychosocial interventions (CDPI) have been developed to train and assist caregivers in their efforts to maximize the odds of treatment success for those in their care. This meta-analysis compared CDPI versus treatment as usual (TAU) on outcomes such as hospitalization, relapse, non-compliance, and “other outcomes” (emergency services utilization, suicide attempt, and death). A systematic literature search (2005–2015) was conducted to identify randomized controlled trials of outpatient administered CDPI versus TAU to treat adult patients recovering from schizophrenia. Relative risks (RR) with 95% confidence intervals derived via random effects meta-analysis were calculated to compare CDPI versus TAU on the aforementioned outcomes. Eighteen of the 693 citations were retained for analysis. Overall RR for CDPI versus TAU suggested improved outcomes associated with CDPI: hospitalization [0.62 (0.46, 0.84) p < 0.00001], relapse [0.58 (0.47, 0.73) p < 0.00001] and other outcomes [0.70 (0.19, 2.57) p = 0.59]. CDPI was associated with significantly better compliance with medication and clinical activities combined [0.38 (0.19, 0.74) p = 0.005]. Medication compliance alone favored CDPI but was non-significant. Compliance with clinical activities alone favored CDPI significantly [0.22 (0.11, 0.47) p < 0.00001]. CDPI is associated with reductions in hospitalization, relapse, and treatment non-compliance.

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Experiences of patients with stroke and their caregivers with caregiver-mediated exercises during the CARE4STROKE trial

Purpose: Caregiver-mediated exercises are a novel way of delivering augmented exercise therapy for patients with stroke, in which patients do additional therapeutic exercises together with a caregiver. This explorative qualitative study is part of the CARE4STROKE trial and focused on how participants manage these exercises together. The research questions were: (1) how do the patient-caregiver couples exercise together? and (2) what does exercising together bring about, besides more hours of practice?; Methods: Semi-structured interviews were conducted with patients and caregivers who participated in the CARE4STROKE intervention. Inductive thematic data analysis was applied.; Results: Seven patients and seven caregivers were interviewed. Three different role-dynamics were found during caregiver-mediated exercises: (1) patient in control, (2) in concert, and (3) the caregiver as informal carer. In addition, three themes were identified about what exercising together brings about: (a) tailor-made exercises through active involvement, (b) preparation for the home situation, and (c) opportunity to be involved.; Conclusion: Different role-dynamics are at play in caregiver-mediated exercises, and it is important for participating staff to be aware of their possible effects on the strain of patient or caregiver. Caregiver-mediated exercises were found to enhance individualization of the treatment plan and preparation for home discharge. Implications for rehabilitation Caregiver-mediated exercises, in which a caregiver does exercises with a patient, are currently under investigation as a new form of augmented exercise delivery after stroke Doing exercises together seems to make patient and caregivers actively involved in rehabilitation, which they appreciate, and which seems to help them prepare for the home situation Caregiver selection and monitoring role-dynamics during exercising is an important task of the rehabilitation team.

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‘Call me if you need’: Social support experiences under economic and social change

Social interactions play an important role in people’s life and people’s health but their scope and intensity tend to decrease with age, challenging social support dynamics and increasing the risk of social isolation and helplessness. In Portugal, policymakers still seem to rely on traditional social relations in eldercare, while contextual changes and trends are redefining family roles and behaviors and defying the established social support structure. In this work, we aim to examine the scope, structure and experiences of the informal social support network available in the country for stroke patients 6 months after their discharge from the acute care unit in the context of a larger study. The results seem to confirm the importance of family as a source of social support and shed light on different bonding experiences with non-kin social groups, such as neighbors and friends. A coordinated care provision, combining formal and informal support is vital and beneficial for patients, their caregivers and the care system.

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Investment in Australian mental health carer services: how much and does it reflect evidence of effectiveness?

Objective The aims of this study were to quantify Australian federal and state government expenditure on mental health carer services for 2014-15, map the types of services being provided and explore how funded service types compare with the evidence base for the outcomes of these carer services. Methods Web searches were conducted to identify in-scope mental health carer services in Australia funded by federal and state and territory governments. Funding estimates were confirmed where possible with available government and carer organisation contacts. A literature search was conducted for reviews of studies investigating mental health carer service outcomes. Results In 2014-15, the estimated Australian national, state and territory government expenditure on mental health carer services was approximately A$90.6 million. This comprised A$65.6 million in federal expenditure and A$25.0 million in state and territory expenditure. Most funding streams provided respite and psychoeducation. The literature showed positive carer outcomes for psychoeducation and intensive family interventions. Evidence was lacking for the effectiveness of respite services. Conclusions These findings suggest a mismatch between what is known about the extent to which different service types deliver positive carer outcomes and the current allocation of funds across Australia's mental health system. This study also highlights the fragmentation of the mental health carer services system, supporting the need to streamline access.

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Informal support for older adults is negatively associated with walking and eating during hospitalization

Processes related to daily care of older adults during hospitalization, such as mobility and nutrition, have long-term consequences for their health and functioning. Although instrumental support provided by family members during hospitalization is highly prevalent, its relationship to older adults' actual walking and eating is unknown. Data on walking level (walking outside vs. inside the room) and nutritional intake were collected from 493 independent older adults admitted to internal medicine wards through up to three daily interviews using validated questionnaires. Informal support with walking and eating was assessed with the modified Informal Caregiving for Hospitalized Older Adults scale. Multivariate regression showed that informal support with walking and eating was associated with greater likelihood of walking inside the room and with lower nutritional intake. This association between informal support and less walking and eating call for routine functional assessments and tailored counseling of informal caregivers to meet older patients' support needs.

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Family caregivers: Important but often poorly understood

An editorial is presented on the increase importance of family caregivers to improve healthcare outcomes. It highlights the health benefits of caregiving to reduce physical, emotional and financial strains particularly for individuals with chronic illness. It also cites the influence of several factors to the increase caregiver engagement of the nurses including health policy, practice and nursing education.

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A Comprehensive Measure of the Costs of Caring for a Parent: Differences According to Functional Status

Approximately 34 million family and friends provided unpaid care to individuals aged 50 and older in 2015. It is difficult to place a value on that time, because no payment is made to the caregiver, and multiplying caregiving hours by a wage does not account for the value of lost leisure time, implications for future employability and wages, or any intrinsic benefits accrued to the care provider. This study used a dynamic discrete choice model to estimate the costs of informal care provided by a daughter to her mother, including these other costs and benefits not typically accounted for, and compared these cost estimates for 4 categories of the mother's functional status: doctor-diagnosed memory-related disease, limitations in activities of daily living (ADLs), combination of both, cannot be left alone for 1 hour or more. We studied women aged 40 to 70 with a living mother at the start of the sample period (N=3,427 adult daughters) using data from the Health and Retirement Study (1998-2012). The primary outcome was the monetized change in well-being due to caregiving, what economists call "welfare costs." We estimate that the median cost to the daughter's well-being of providing care to an elderly mother ranged from $144,302 to $201,896 over 2 years, depending on the mother's functional status. These estimates suggest that informal care cost $277 billion in 2011, 20% more than estimates that account only for current foregone wages.

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The intersection of formal and informal care for older people in a multicultural society: the case of two adult day-care centres in Northern Israel

Despite being a relatively young society, Israel, like many other countries, has not escaped the global ageing phenomenon. About 11% of its population are aged 65 years or older; this compares with an average of 18% in many European countries. About 75% of Israel’s population are Jewish and about 21% are Arabs (CBS, 2017).[...] Despite the fact that more older people – from both communities – are now accepting a mix of support from their families alongside services, families are still the main source of care for older people in Israel (Katz et al, 2015).

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Collateral damage: Australian carers' services caught between aged care and disability care reforms

In Australia, 2.7 million family and friend carers care for people with disabling conditions (including mental health conditions), who are terminally ill and/or who are elderly and frail. It is no surprise that those carers who provide the most care often experience multiple disadvantages, including constraints on their ability to work and accompanying financial stress, social isolation, and high levels of disability, ill health and stress [...] The question remains, however: in the context of increasing fiscal constraint and the diversion of funds into the NDIS, exactly how much will be left to support the proposed integrated carer support system? Additionally, if this development does not materialise, what future is there for dedicated support for Australia’s carers?

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Informal caregivers in hospitals: Opportunities and threats

Objective: High hospital costs are a challenge that health system face. Additionally, studies identified manpower deficiency as a problem in health system. Hospital is a place where patients with different physical and mental conditions come to. Their families and friends' companionship can facilitate this situation for them. This study illustrates the roles of informal caregivers in hospital.; Method: This is a phenomenological qualitative study. Data were gathered through semistructured interviews. We interviewed 22 informal caregivers and 9 nurse staffs from different departments of hospital. They were selected through purposeful and snowball sampling approach. The framework method was used for data analysis.; Results: We found 3 main themes including (a) roles of informal caregivers, (b) opportunities of presence of the informal caregivers in the hospital, and (c) threats of presence of informal caregivers.; Conclusions: This study shows some roles for informal caregivers including mental supports, consultation, decision-making, and care roles. Concerning the shortage of manpower in Iran's hospitals, nurses have less time to take care of each patient; therefore, using informal caregivers as an implicit strategy to overcome nursing shortage and to reduce hospital costs seems to be beneficial. We suggest that an appropriate plan is necessary to make use of them for filling this gap to some extent, as well as providing training sessions and facilities for companions acting as informal caregivers.

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Growth of Shared Lives placements slows

Umbrella body Shared Lives Plus calls for national awareness raising campaign to help boost carer numbers. 

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Quality of family relationships and outcomes of dementia: A systematic review

Objectives To evaluate the association between the quality of relationship between a person with dementia and their family carer and outcomes for the person with dementia. Design Systematic review. Eligibility criteria Cohort studies of people with clinically diagnosed dementia and their main carers. Exposures of interest were any elements of relationship quality, for example, attachment style, expressed emotion and coping style. Our primary outcome was institutionalisation, and secondary outcomes were hospitalisation, death, quality of life and behavioural and psychiatric symptoms of dementia ('challenging behaviour'). Data sources MEDLINE, Embase, Web of Science, PsycInfo, the Cochrane Library and Opengrey were searched from inception to May 2017. Study appraisal and synthesis methods The Newcastle-Ottawa Scale was used to assess risk of bias. A narrative synthesis of results was performed due to differences between studies. Results Twenty studies were included. None of the studies controlled for all prespecified confounding factors (age, gender, socioeconomic status and severity of dementia). Reporting of results was inadequate with many studies simply reporting whether associations were statistically significant' without providing effect size estimates or CIs. There was a suggestion of an association between relationship factors and global challenging behaviour. All studies evaluating global challenging behaviour provided statistical evidence of an association (most P values below 0.02). There was no consistent evidence for an association for any other outcome assessed. Conclusions There is currently no strong or consistent evidence on the effects of relationship factors on institutionalisation, hospitalisation, death or quality of life for people with dementia. There was a suggestion of an association between relationship factors and challenging behaviour, although the evidence for this was weak. To improve our ability to support those with dementia and their families, further robust studies are needed. PROSPERO registration number CRD42015020518. 

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Families’ experiences of involvement in care planning in mental health services: an integrative literature review

Introduction Mental health service policy stipulates that family carers be involved in care planning. Aim To identify families’ experiences of care planning involvement in adult mental health services. Method An integrative review where electronic databases and grey literature were searched for papers published between 01 January 2005 and 10 February 2016. Results Fifteen papers met the inclusion criteria. Thematic analysis generated three themes: (1) families’ experience of collaboration, (2) families’ perceptions of professionals and (3) families’ impressions of the care planning process. Collaborative decision-making is not regularly experienced by families with an ‘us’ and ‘them’ divide, perpetuated by a lack of communication, confidentiality constraints and a claim of ‘insider knowledge’ of service users. When involved, families perceive care planning to be uncoordinated and that their lived experiences are not always appreciated. Discussion Families need to be valued, empowered and engaged in care planning and the partnership distance be addressed. Accommodating the views of family, service user and professionals is preferable but not always possible. Our findings suggest that the key element for professionals is to value all ‘insider knowledge’ where possible. Implications for Practice Services should develop written information on confidentiality for families and facilitate open communication concerning their involvement in care planning. 

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Who cares? The implications of informal care and work for policy makers and employers

Outlines some of the implications associated with the growing number of informal carers in the UK, the health and social care system's increasingly unsustainable reliance on them, and what Government and employers can do about it. The report is informed by the academic and grey literature, as well as views from a workshop attended by over 30 stakeholders from government and non-government bodies, individual carers, carers charities, think tanks, and businesses. The report looks at the increase in the number of informal carers in the UK, the financial and health implications of caring, and the challenge for policy makers and employers as carers become an increasing percentage of an ageing workforce. The report makes recommendations for Government, policymakers and business. The recommendations offer practical guidance on how to improve employment outcomes for carers, and which will also help to tackle the financial and health problems carers face. The recommendations focus on four themes: workplace flexibility; statutory leave; workplace support; and returning to work.

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Formal and informal long-term care in the community: interlocking or incoherent systems?

Help with activities of daily living for people in the community is provided through formal services (public and private) and informal (often unpaid) care. This paper investigates how these systems interlock and who is at risk of unmet need. It begins by mapping differences between OECD countries in the balance between formal and informal care, before giving a detailed breakdown for the UK. New analysis of UK Family Resources Survey data for 2012/13 and 2013/14 suggests high levels of unmet need. Who receives formal and informal care, and who receives neither, among the working-age and older populations were investigated. Findings: while informal care fills some gaps left by the lack of availability of formal services (and vice versa), not all older or working-age disabled people are protected in these ways. Adults living alone and those with high but not the highest levels of difficulty are most likely to have unmet need. Means-tested public entitlements ameliorate but do not remove the increased risk among people in low-income households. The paper concludes that public policy needs to integrate its support for formal and informal modes of care, with particular attention to those groups most at risk of unmet need.

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Informal care and health behaviors among elderly people with chronic diseases

Background: The mechanism by which social relationships influence health can be interpreted as a social network regulating one's health behaviors. Based on the hypothesis that relatives, friends, or neighbors are sources of social support and may monitor one's health behaviors, researchers have gotten significant and consistent results that a social network can regulate health behaviors. However, few empirical studies have been conducted to examine the role of informal care in the regulation of health behaviors, especially for elderly individuals with chronic diseases that can be controlled by healthy behaviors. This paper researched the effects of informal care on health behaviors-smoking control, dietetic regulation, weight control, and maintenance of exercise-among elderly patients with chronic diseases in China who are facing the challenge of aging. Methods: We used the propensity score matching method to control the impacts of a very rich set of family and individual characteristics. The 2011-2012 national baseline data of the China Health and Retirement Longitudinal Study (CHARLS) was used. Results: Our findings showed that informal care could significantly help improve the health behaviors of elderly people. Informal care could improve the compliance of smoking control and dietetic regulation significantly. Elderly people with informal care smoked less and consumed more meals per day. For weight control, informal care helped decrease the possibility of weight gain of elderly people, but its impacts were not significant for BMI and weight loss. Last, for the elders, informal care could only help increase the probability of walking exercise; however, there was no significant result for moderate exercise. Conclusions: Findings from this study highlight the importance of informal care among elderly people. Our results appeal to policy makers who aim to control chronic diseases that they should take informal care into account and provide appropriate policies to meet the demand of informal care for elderly people. 

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Healthcare and the Co-creation of Value: Qualifying the Service Roles of Informal Caregivers

The study advances the debate on the co-creation of value in healthcare by treating the informal caregivers as a key organizational resource for the providers. Using the Dialogue, Access, Risk, and Transparency (DART) model developed by Prahalad and Ramaswamy as an interpretative key, this qualitative paper frames the role of the informal caregivers within the multiple experiences of value co-creation in which they are engaged. The central argument is that the informal caregiver performs three intersecting key roles: patient's advocate, system navigator and coordinator of care.

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Exploring the potential for family carers to support people with mental illness to stop smoking

Cigarette smoking poses significant health burdens for people with mental illness. They die sooner than they should, and smoking is a major contributor to their high rates of morbid chronic physical health conditions and early mortality, compared to the general population. Family carers provide important support to people with mental illness. However, family carers' perspectives of smoking by their family members with mental illness are largely absent from the research literature and from practice, despite smoking rates remaining high and quit rates remaining low for this population. Little is known about how family carers are or could be involved in supporting people with mental illness who smoke to stop smoking. This paper aims to provide a discussion of the opportunities for family carers to support their family member's smoking cessation and a discussion of our preliminary research on this topic. From the available literature, it appears that family carers are well placed to support smoking cessation for this population; however, they struggled physically, philosophically, and emotionally with perceived responsibilities involving their family member's smoking and the caring role. They felt isolated and asserted that there was limited support from service providers to assist them. The authors concluded that family carers are important agents within the person's immediate environment who could help them to improve their smoking cessation success. This suggests also that mental health services and other health service providers could benefit from including family carers in their efforts to support smoking cessation for people with mental illness who smoke.

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Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015-2035

Introduction: In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. Methods: We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers’ wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. Results: The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. Conclusions: The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.

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Recognizing the Important Role of Family Caregivers

Harris focuses on the the healthcare industry's start of recognizing family members and close friends to have a greater impact on the patients experience of illness and outcomes than formal healthcare. She also highlights the statistics of United States Census Bureau and the National Center for Heath Statistics 2016 profile of older Americans and opportunity to recognize and celebrate the valuable role that informal caregivers provide every day by showing support through shopping, sending card, telephone calls, random acts of kindness and spiritual support through prayer.

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Filling the gaps and finding our way: family carers navigating the healthcare system to access physical health services for the people they care for

Aims and Objectives To elicit the perspectives of carers of people with mental illness regarding access to, and experience with, physical healthcare services for mental health consumers. Background People diagnosed with mental illness have increased risks of physical illness and earlier death, problems able to be addressed through better physical health services. Carers of people with mental illness play a significant role in the mental healthcare system yet research examining their views is lacking. Design Qualitative exploratory. Methods In-depth interviews were conducted with 13 mental health carers. They were asked to describe their views and experiences pertaining to the physical health and availability of physical health care for the people they care for. Data were analysed using the framework of Braun and Clarke. Results Analysis of carer responses identified two important themes: responsiveness and access, and a shortage of care coordination. Carers felt alienated from physical healthcare providers and were compelled to fill gaps in available care through persistence in ensuring access to physical healthcare services. Conclusions The findings identify carers as key stakeholders in the physical health care for the people they care for. Their involvement in accessing and coordinating care provides vital perspective on health service capacity, which requires further consideration in the practice and research domains. Relevance to clinical practice Carers of people diagnosed with mental illness are crucial to the effective delivery of mental health services. Their perspectives must be central to their research agenda and contribute to the development of initiatives to improve clinical practice and promote improved physical health care.

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Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

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"helping my neighbour is like giving a loan..." -the role of social relations in chronic illness in rural Uganda

Background: Understanding individuals' experience of accessing care and tending to various other needs during chronic illness in a rural context is important for health systems aiming to increase access to healthcare and protect poor populations from unreasonable financial hardship. This study explored the impact on households of access to free healthcare and how they managed to meet needs during chronic illness. Methods: Rich data from the life stories of individuals from 22 households in rural south-western Uganda collected in 2009 were analysed. Results: The data revealed that individuals and households depend heavily on their social relations in order to meet their needs during illness, including accessing the free healthcare and maintaining vital livelihood activities. The life stories illustrated ways in which households draw upon social relations to achieve the broader social protection necessary to prevent expenses becoming catastrophic, but also demonstrated the uncertainty in relying solely on informal relations. Conclusion: Improving access to healthcare in a rural context greatly depends on broader social protection. Thus, the informal social protection that already exists in the form of strong reciprocal social relations must be acknowledged, supported and included in health policy planning.

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Formal and informal long term care work: policy conflict in a liberal welfare state

Purpose The undervaluing of care work, whether conducted informally or formally, has long been subject to debate. While much discussion, and indeed reform has centred on childcare, there is a growing need, particularly in countries with ageing populations, to examine how long-term care (LTC) work is valued. The purpose of this paper is to provide an overview of the way in which employment policies (female labour market participation, retirement age, and precarious work) and social policies (care entitlements and benefits/leave for carers) affect both informal carers and formal care workers in a liberal welfare state with a rapidly ageing population. Design/methodology/approach Drawing the adult worker model the authors use the existing literature on ageing care and employment to examine the approach of a liberal welfare state to care work focusing on both supports for informal carers and job quality in the formal care sector. Findings The research suggests that employment policies advocating increased labour participation, delaying retirement and treating informal care as a form of welfare are at odds with LTC strategies which encourage informal care. Furthermore, the latter policy acts to devalue formal care roles in an economic sense and potentially discourages workers from entering the formal care sector. Originality/value To date research investigating the interplay between employment and LTC policies has focused on either informal or formal care workers. In combining both aspects, we view informal and formal care workers as complementary, interdependent agents in the care process. This underlines the need to develop social policy regarding care and employment which encompasses the needs of each group concurrently.

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Valuing Informal Care in Ireland: Beyond the Traditional Production Boundary

Measures of economic output captured by traditional national account metrics emphasise the importance of paid work over unpaid work which can lead to inefficient policy decision making. We utilise Irish census data to measure the economic value of informal care in Ireland. Our results reveal the considerable value of informal care in Ireland ranging between E2.1 and E5.5 billion, depending on valuation approach. They also show a gendered distribution of informal care activities and the consequences of transposing market-based gender compensation asymmetries directly onto non-market activity. We discuss evidence of best practice in long-term care policy across Europe, which involves a combination of income supports for informal carers and substantial investment in formal home care provision. We also discuss apparent incongruences in current Government policy, which appears to prioritise a formal residential care model over more community-based care models, contradicting previously stated policy objectives and best practice in Europe.

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Spotlight: Mind the care gap – exposing the health system’s vulnerability to the gap between family care provision and anticipated demand

This Spotlight offers an analysis of family carers, those who provide care and support on an unpaid basis to people who are sick, disabled or frail in the community. It explores how demand for care at home is likely to increase dramatically while the future supply of family carers may be limited by demographic factors. High calculations of the monetary value of family care to the State underscore it’s vulnerability to any future shortage in family carers. Current developments which may have an impact on carers’ lives and the future supply of carers are considered.

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Legal & General demands help for informal carers

Legal & General is championing for change after learning the UK's informal carers are contributing the equivalent of billions of pounds to meet the care needs of relatives and friends.

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Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists

Background To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. Patients and Methods A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. Results Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003) oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). Conclusions Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision.

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Formal and informal care of community-living older people: A population-based study from the Swedish National study on Aging and Care

Objectives: Study formal and informal care of community-living older people in the Swedish National study of Aging and Care (SNAC). Design: Cross-sectional, population based cohort. Setting: Three areas in Sweden: Municipality of Nordanstig, Stockholm and Skåne County. Participants: 3,338 persons ≥72 years. Measurements: Patterns and amounts of informal and formal care by cognition and area of residence. Results: 73% received no care; 14% formal care; and 17% informal care (7% received both). In the whole study population, including those who used no care, individuals in small municipalities received 9.6 hours of informal care/month; in mid-size municipalities, 6.6; and in urban areas, 5.6. Users of informal care received 33.1 hours of informal care/month in small municipalities, 54.6 in mid-size municipalities and 36.1 in urban areas. Individuals with cognitive impairment received 14.1 hours of informal care/month, 2.7 times more than people with no/slight impairment. In the whole study population, individuals in small municipalities received an average of 3.2 hours of formal care/month; in mid-size municipalities 1.4; and in urban areas, 2.6. Corresponding figures for formal care users were 29.4 hours in small municipalities, 13.6 in mid-size municipalities and 16.7 in urban areas. Formal care users received 7.1 hours, and informal care users, 5.9 hours for each hour/month received by people in the study population as a whole. Conclusions: More informal than formal care was provided. Informal care is more frequent in small municipalities than urban areas and for those with than without cognitive impairment. The relationship between data on the whole population and the data on users or care indicates that population-based data are needed to avoid overestimates of care.

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Development and Initial Validation of the Caregiver Perceptions About Communication With Clinical Team Members (CAPACITY) Measure

Despite the important role that family caregivers play managing the care of persons with complex health needs, little is known about how caregivers perceive themselves to be recognized and valued by health care professionals. Our objective was to develop and validate a novel measure, the CAregiver Perceptions About Commun Ication with Clinical Team members (CAPACITY) instrument. Questions focus on perceived quality of communication with the health care team and the extent to which caregivers believe that the health care team considers their capacity and preferences in decision making. A confirmatory factor analysis supported a two-factor solution addressing communication and capacity. Internal consistency reliability was .90 for the communication domain and .93 for the capacity domain. Correlations between these two subscales and individual difference measures provided evidence of convergent and discriminant validity. The CAPACITY instrument may be a useful performance measure that quantifies the extent to which caregivers' experience person- and family-centered health care.

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The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures

Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care. Aim: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. Design: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. Results: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life. Conclusion: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.

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The importance of family caregiving to achieving palliative care at home: a case report of end-of-life breast cancer in an area struck by the 2011 Fukushima nuclear crisis A case report

Rationale: The primary setting of palliative care has shifted from inpatient care to patients’ residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. Patient concerns: In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. Diagnoses: The patient was diagnosed with stage IV breast cancer. Interventions: The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. Outcomes: The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. Lessons: Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients’ end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population ageing and social isolation may continue to advance worldwide.

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The Economic and Social Impact of Informal Caregivers at Mulago National Referral Hospital, Kampala, Uganda

Background The severe deficit of health care workers in Uganda necessitates hospitalized patients to be cared for by a relative. These informal caregivers constitute a crucial component of patient care. Mulago Hospital in Kampala, Uganda, is one of the nation's national referral hospitals, receiving very sick patients. Although studies have been conducted on challenges facing informal caregivers in the home setting, no study has addressed the caregiver burden in the hospital setting. Methods A survey of 100 randomly selected informal caregivers was conducted in Mulago Hospital's internal medicine wards to evaluate informal caregivers' demographics, impact on patient care, and challenges. Results Challenges include emotional burdens, lack of sanitation, accommodation, sufficient health workers, finances, and recognition. Recommendations were given to ensure improve informal caregivers' situations. Conclusions Despite hardships, informal caregivers recognize the importance of familial presence, thereby setting a new standard for patient care by recreating the comfort of home care in the hospital. Studying the characteristics of these care givers and more fully delineating the sacrifices they make and the challenges they faced provides the basis for a series of recommendations to hospital management aimed both at improved patient care and care of the informal caregiver.

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Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?

Objectives: To investigate whether community-based (CO) day care with carer support according to the proven effective Meeting Centres Support Programme model is associated with higher satisfaction of people with dementia (PwD) and their informal caregivers (CG) and with a higher job satisfaction among care staff compared to traditional nursing home-based (NH) day care.  Method: Data were collected in 11 NH day care centres and 11 CO day care centres. User satisfaction of PwD and CG was evaluated in the 11 NH day care centres ( n PwD = 41, n CG = 39) and 11 CO day care centres ( n PwD = 28, n CG = 36) with a survey after six months of participation. Job satisfaction was measured only in the six NH day care centres that recently transformed to CO day care, with two standard questionnaires before ( n STAFF = 35), and six months after the transition ( n STAFF = 35). Results: PwD were more positive about the communication and listening skills of staff and the atmosphere and activities at the CO day care centre. Also, CG valued the communication with, and expertise of, staff in CO day care higher, and were more satisfied with the received emotional, social and practical support. After the transition, satisfaction of staff with the work pace increased, but satisfaction with learning opportunities decreased. Conclusion: PwD and CG were more satisfied about the communication with the staff and the received support in CO day care than in NH day care. Overall job satisfaction was not higher, except satisfaction about work pace.

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Perceived support from a caregiver's social ties predicts subsequent care-recipient health

Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health.We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016.Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2.Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.

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Perceived support from a caregiver's social ties predicts subsequent care-recipient health

Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health.We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016.Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2.Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.

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Transitions From Hospitals to Skilled Nursing Facilities for Persons With Dementia: A Challenging Convergence of Patient and System-Level Needs

Purpose of the Study: To describe skilled nursing facility (SNF) nurses’ perspectives on the experiences and needs of persons with dementia (PwD) during hospital-to-SNF transitions and to identify factors related to the quality of these transitions. Design and Methods: Grounded dimensional analysis study using individual and focus group interviews with nurses (N = 40) from 11 SNFs. Results: Hospital-to-SNF transitions were largely described as distressing for PwD and their caregivers and dominated by dementia-related behavioral symptoms that were perceived as being purposely under-communicated by hospital personnel in discharge communications. SNF nurses described PwD as having unique transitional care needs, which primarily involved needing additional discharge preplanning to enable preparation of a tailored behavioral/social care plan and physical environment prior to transfer. SNF nurses identified inaccurate/limited hospital discharge communication regarding behavioral symptoms, short discharge timeframes, and limited nursing control over SNF admission decisions as factors that contributed to poorer-quality transitions producing increased risk for resident harm, rehospitalization, and negative resident/caregiver experiences. Engaged caregivers throughout the transition and the presence of high-quality discharge communication were identified as factors that improved the quality of transitions for PwD. Implications: Findings from this study provide important insight into factors that may influence transitional care quality during this highly vulnerable transition. Additional research is needed to explore the association between these factors and transitional care outcomes such as rehospitalization and caregiver stress. Future work should also explore strategies to improve inter-setting communication and care coordination for PwD exhibiting challenging behavioral symptoms.

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“In our community, a friend is a psychologist”: An ethnographic study of informal care in two Bhutanese refugee communities

The recent rise in suicide among Bhutanese refugees has been linked to the erosion of social networks and community supports in the ongoing resettlement process. This paper presents ethnographic findings on the role of informal care practiced by relatives, friends, and neighbors in the prevention and alleviation of mental distress in two Bhutanese refugee communities: the refugee camps of eastern Nepal and the resettled community of Burlington, Vermont, US. Data gathered through interviews (n = 40, camp community n = 22, resettled community), focus groups (four, camp community), and participant observation (both sites) suggest that family members, friends, and neighbors were intimately involved in the recognition and management of individual distress, often responding proactively to perceived vulnerability rather than reactively to help-seeking. They engaged practices of care that attended to the root causes of distress, including pragmatic, social, and spiritual interventions, alongside those which targeted feelings in the “heart-mind” and behavior. In line with other studies, we found that the possibilities for care in this domain had been substantially constrained by resettlement. Initiatives that create opportunities for strengthening or extending social networks or provide direct support in meeting perceived needs may represent fruitful starting points for suicide prevention and mental health promotion in this population. We close by offering some reflections on how to better understand and account for informal care systems in the growing area of research concerned with identifying and addressing disparities in mental health resources across diverse contexts.

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Valuing and Integrating Informal Care as a Core Component of Long-Term Care for Older People: A Comparison of Recent Developments in Italy and Spain

The international long-term care (LTC) debate has recently been focusing on how to strengthen home care provision. In this regard, a major role has been played by informal care and how to best integrate it in a holistic care approach. Italy and Spain, usually labeled as “familialist” or “family-based” care models, have been promoting national reforms or actions to support the integration of “informal” actors into the overall LTC system. Through a comparative review of recent trends observed in the two care regimes, this article aims at contributing to improve our cross-national understanding of how LTC is changing across Europe, identifying the basic approaches adopted in Italy and Spain and highlighting both their strengths and drawbacks.

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Informal and formal care: Substitutes or complements in care for people with dementia? Empirical evidence for 8 European countries

On average informal caregiving substitutes for home help and nurse visits.•A complementary relationship between informal care and outpatient visits is identified.•The findings vary significantly between different geographical European countries. Background In order to contain public health care spending, European countries attempt to promote informal caregiving. However, such a cost reducing strategy will only be successful if informal caregiving is a substitute for formal health care services. We therefore analyze the effect of informal caregiving for people with dementia on the use of several formal health care services. Study DesignThe empirical analysis is based on primary data generated by the EU-project ‘RightTimePlaceCare’ which is conducted in 8 European countries. 1223 people with dementia receiving informal care at home were included in the study. Methods Using a regression framework we analyze the relationship between informal care and three different formal health care services: the receipt of professional home care, the number of nurse visits and the number of outpatient visits. Results The relationship between formal and informal care depends on the specific type of formal care analyzed. For example, a higher amount of informal caregiving goes along with a lower demand for home care services and nurse visits but a higher number of outpatient visits. Conclusion Increased informal caregiving effectively reduces public health care spending by reducing the amount of formal home care services. However, these effects differ between countries.

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The utilization of formal and informal home care by older patients with cancer: a Belgian cohort study with two control groups

Background The purpose of this paper is to analyse the utilization of formal and informal home care among older patients with cancer (OCP) and to compare this with middle-aged patients with cancer (MCP) and older patients without cancer (ONC). Additionally, we examined predictors of transitions towards formal care one year after a cancer diagnosis. Methods OCP and MCP had to be recruited within three months after a cancer diagnosis and have an estimated life expectancy over six months. ONC consisted of patients without known cancer, seen by the general practitioner. Formal and informal care were compared between the patient groups at baseline, i.e. shortly after a cancer diagnosis and changes in care were studied after one year. Results A total of 844 patients were evaluable for formal care at baseline and 469 patients (56%) at follow-up. At baseline, about half of older adults and 18% of MCP used formal care, while about 85% of cancer patients and 57% ONC used informal care. Formal care increased for all groups after one year though not significantly in OCP. The amount of informal care only changed in MCP which decreased after one year. Cancer-related factors and changes in need factors predict a transition towards formal care after a cancer diagnosis. Conclusions A cancer diagnosis has a different impact on the use of formal and informal care than ageing as such. The first year after a cancer diagnosis is an important time to follow-up on the patients’ needs for home care.

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The Economic Value of Informal Caregiving for Persons With Dementia: Results From 38 States, the District of Columbia, and Puerto Rico, 2015 and 2016 BRFSS

Objectives: To estimate the economic value from a societal perspective of informal caregiving of persons with dementia in 38 states, the District of Columbia, and Puerto Rico.; Methods: Using a cost replacement method and data from the 2015 and 2016 Behavioral Risk Factor Surveillance System caregiver module, the US Bureau of Labor and Statistics May 2016 Occupation Profiles, and the US Department of Labor, we estimated the number and economic direct cost of caregiving hours.; Results: An estimated 3.2 million dementia caregivers provided more than 4.1 billion hours of care, with an average of 1278 hours per caregiver. The median hourly value of dementia caregiving was $10.28. Overall, we valued these caregiving hours at $41.5 billion, with an average of $13 069 per caregiver.; Conclusions: Caregivers of persons with dementia provide care that has important economic implications. Without these efforts, many people would either not receive needed care or have to pay for that support. Surveillance data can be used to estimate the contributions of informal caregivers and the economic value of the care they provide.

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Exploring the collaboration between formal and informal care from the professional perspective-A thematic synthesis

In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co-ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understand how professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty-two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi-faceted and dynamic interface of professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands, where an increased emphasis is placed on informal care structures.

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The indirect costs of palliative care in end-stage cancer: A real-life longitudinal register- and questionnaire-based study

Background: Palliative care needs are increasing as more people are dying from incurable diseases. Healthcare costs have been reported to be highest during the last year of life, but studies on the actual costs of palliative care are scarce.; Aim: To explore the resource use and costs of palliative care among end-stage breast, colorectal and prostate cancer patients after termination of life-prolonging oncological treatments, that is, during the palliative care period.; Design: A real-life longitudinal register- and questionnaire-based study of cancer patients' resource use and costs.; Participants: In total, 70 patients in palliative care with no ongoing oncological treatments were recruited from the Helsinki University Hospital or from the local hospice. Healthcare costs, productivity costs and informal care costs were included.; Results: The mean duration of the palliative care period was 179 days. The healthcare cost accounted for 55%, informal care for 27% and productivity costs for 18% of the total costs. The last 2 weeks of life contributed to 37% of the healthcare cost. The costs of the palliative care period were higher in patients living alone, which was mostly caused by inpatient care ( p = 0.018).; Conclusion: The 45% share of indirect costs is substantial in end-of-life care. The healthcare costs increase towards death, which is especially true of patients living alone. This highlights the significant role of caregivers. More attention should be paid to home care and caregiver support to reduce inpatient care needs and control the costs of end-of-life care.

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Predictive factors for thirty day mortality in geriatric patients with hip fractures: a prospective study

Purpose: The study aims to analyze the incidence of 30-day mortality in elderly patients who underwent surgery for hip fractures and its associated factors.; Methods: A prospective multicentric study was performed. All patients aged ≥ 65 years, with fragility hip fractures, consecutively admitted in two Italian hospitals were included. Patients with periprosthetic or pathological fractures were excluded. Logistic regression was used to identify patient and patient care variables that independently influenced the 30-day mortality and receiver operating characteristic (ROC) curve analysis to assess their predictive capacity on the outcome.; Results: Of the patients, 728 met the inclusion criteria, of whom approximately 5% died within 30 days after admission. The 45.7% of the deceased patients died while hospitalized. Multivariate analysis showed that advancing age was the only independent predictor of 30-day mortality (OR = 1.084, 95% CI = 1.024-1.147), while a higher presence of informal caregivers was a protective factor (OR = 0.988, 95% CI = 0.979-0.997). The area under the ROC curve of the model was 0.723 (CI95% 0.676-0.770) for 30-day mortality in elderly hip fractures patients.; Conclusions: Patients with an advanced age need careful follow-up, especially within 30 days following operation for hip fracture; at the same time, the presence of informal caregivers at the patient's bedside should be promoted.

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Supporting carers: Guidance and case studies

Councils in England receive 1.8 million new requests for adult social care a year – the equivalent of nearly 5,000 a day – and despite some helpful extra funding there is still a £3.5 billion funding gap facing adult social care by 2025 just to maintain existing standards of care. Despite these tremendous pressures this publication demonstrates current examples of how councils support adult and young carers locally in a range of different ways from respite breaks to discount cards to tailored information and advice.

Key statistics

  • 1 in 10 people are carers
  • 40 per cent increase in carers predicted over next 20 years
  • £132 billion worth of care provided by carers
  • 1 in 5 carers are aged over 65
  • 1.4 million carers provide over 50 hours of care a week
  • 7 in 10 have suffered mental ill health and 6 in 10 physical ill health from caring
  • 166,363 young carers in England – a fifth higher than a decade previously
  • 1 in 12 young carers is caring for more than 15 hours a week
  • 1 in 20 misses school because of their caring responsibilities
  • young carers are 1.5 times more likely to have a long-term illness, special educational needs or a disability
  • there are 670,000 unpaid carers of people with dementia in the UK
  • two thirds of people with dementia live at home and most are supported by unpaid carers.

The following case studies show how local authorities are supporting carers across England. It identifies the challenges authorities face and how they address them, often in partnership. It highlights the impact of services and lessons learned that will be of interest to all councils. The case studies were compiled following discussions with the lead officers and members in the areas.

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The effect of informal caregiver support on utilization of acute health services among home care clients: a prospective observational study

Background: Emergency department visits and hospitalizations (EDVH) place a large burden on patients and the health care system. The presence of informal caregivers may be beneficial for reducing EDVH among patients with specific diagnoses. Our objective was to determine whether the presence of an informal caregiver was associated with the occurrence of an EDVH among clients 50 years of age or older.; Methods: Using a database accessed through the Toronto Central Community Care Access Centre (CCAC), we identified 479 adults over 50 years of age who received home care in Toronto, Canada. Exposure variables were extracted from the interRAI health assessment form completed at the time of admission to the CCAC. EDVH data were linked to provincial records through the CCAC database. Data on emergency room visits were included for up to 6 months after time of admission to home care. Multiple logistic regression analysis was used to identify factors associated with the occurrence of an EDVH.; Results: Approximately half of all clients had an EDVH within 180 days of admission to CCAC home care. No significant association was found between the presence of an informal caregiver and the occurrence of an EDVH. Significant factors associated with an EDVH included: Participants having a poor perception of their health (adjusted OR = 1.68, 95% CI: 1.11-2.56), severe cardiac disorders (adjusted OR = 1.54, 95% CI: 1.04-2.29), and pulmonary diseases (adjusted OR = 1.99, 95% CI: 1.16-3.47).; Conclusions: The presence of an informal caregiver was not significantly associated with the occurrence of an EDVH. Future research should examine the potential associations between length of hospital stay or quality of life and the presence of an informal caregiver. In general, our work contributes to a growing body of literature that is increasingly concerned with the health of our aging population, and more specifically, health service use by elderly patients, which may have implications for health care providers.

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A longitudinal study looking at and beyond care recipient health as a predictor of long term care home admission

Background: The unpaid care provided by informal caregivers allows care recipients to live longer in their homes, which often results in fewer unnecessary long term care home (LTCH) admissions. Although the relationship between care recipient's health characteristics and institutionalization is well known, the influence of caregiver distress and caregiving coresidence and relationship on this outcome is less clear. This study examines the association of care recipient care needs, caregiver distress and caregiving coresidence and relationship with care recipient long term care home admission.; Methods: A total of 94,957 resident assessment instruments-home care (RAI-HC), completed between April 01st 2013 and April 01st, 2014 as part of a clinical practice by 14 Local Health Integration Networks (LHINs) in Ontario, Canada, were linked to LTCH admissions within 1 year after completion of the first RAI-HC assessment. Cox models were used to examine whether care recipient health care needs, caregiver distress and caregiving characteristics such as coresidence and relationship were associated with LTCH admission. Age, marital status and gender of the care recipient were included as covariates in the model.; Results: Care recipient health care needs and age were the strongest predictors of LTCH admission followed by caregiver distress and caregiving coresidence and relationship. Care recipient marital status was not significant in the survival model. Interestingly, care recipients who were cared for by a coresiding adult child caregiver were less likely to be admitted to a LTCH than care recipients cared for by a spouse caregiver coresiding or not with care recipient. Hazard rates (HR) of admission for care recipients cared for by caregivers coresiding and with other type of relationship with care recipient were not significantly different than HR of care recipients cared for by coresiding child caregivers.; Conclusions: These results emphasize the influence of caregiver distress in LTCH admission and highlight the impact of caregiving relationship and coresidence on this outcome. Policy and decision makers should consider these findings when developing and evaluating interventions aiming to avoid LTCH admissions. Moreover, caregiving coresidence and relationship should be explored in future studies with similar aims, as this information has been neglected in past research.;

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Extending "Continuity of Care" to include the Contribution of Family Carers

Background: Family carers, as a "shadow workforce", are foundational to the day-to-day integration of health service delivery for older family members living with complex health needs. This paper utilises Haggerty's model of continuity of care to explore the contribution of family carers' to the provision of care and support for an older family member's chronic condition within the context of health service delivery. Methods: We analysed data from interviews of 13 family carers in a case study of primary health care in New Zealand -- a Maori Provider Organisation -- to determine the alignment of family caregiving with the three levels of continuity of care (relational continuity, informational continuity, and management continuity). Results: We found alignment of family caregiving tasks, responsibilities, and relationships with the three levels of continuity of care. Family carers 1) partnered with providers to extend chronic care to the home; 2) transferred and contributed information from one provider/service to another; 3) supported consistent and flexible management of care. Discussion: The Maori Provider Organisation supported family carer-provider partnership enabled by shared Maori cultural values and social mandate of building family-centred wellbeing. Relational continuity was the most important level of continuity of care; it sets precedence for family carers and providers to establish the other levels -- informational and management -- continuity of care for their family member cared for. Family carers need to be considered as active partners working alongside responsive primary health care providers and organisation in the implementation of chronic care. 

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Intergenerational transfers and informal care for disabled elderly persons in China: evidence from CHARLS

Aiming at 'ageing healthier and ageing better', a certain amount of highquality informal care should be available for elderly persons with physical disability as formal care is barely accessible in China. The demographic transition and family structural changes have dramatically weakened traditional norms of filial piety and the structure of intergenerational transfers. This article employed nationwide representative data from the first wave (2011) of Chinese Health and Retirement Longitudinal Study (CHARLS) in order to identify the duration of informal care provision at home for frail elders (1122 in rural areas and 577 in urban areas, total 1699), measured in monthly hours, before estimating the associations between intergenerational transfers and the received time of informal care with Tobit Model analysis. Results showed that financial support from the younger generation was unexpectedly negatively associated with the monthly hours of care, implying a reduction of caring support along with increasing financial transfers towards older parents. The lack of informal care could not be compensated by having more children, co-residing with children, or increasing the parent-to-child/grandchild transfers. Spouses were shown to replace children as the major caregivers. In addition, the communitybased long-term care system needs to be promoted to sustain and develop informal care, as the latter will become increasingly important with changing family dynamics. Finally, the received time of informal care, rather than the severity of physical disability measured by difficulty with ADLs or IADLs, was introduced to identify the actual demand for care by elders. The paper argues that it is important to reconceptualise and re-investigate the duration of care provision in the Chinese context in order to develop standards of payment as part of long-term care policies. 

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Challenges in supporting lay carers of patients at the end of life: results from focus group discussions with primary healthcare providers

Background: Family caregivers (FCGs) of patients at the end of life (EoL) cared for at home receive support from professional and non-professional care providers. Healthcare providers in general practice play an important role as they coordinate care and establish contacts between the parties concerned. To identify potential intervention targets, this study deals with the challenges healthcare providers in general practice face in EoL care situations including patients, caregivers and networks. Methods: Focus group discussions with general practice teams in Germany were conducted to identify barriers to and enablers of an optimal support for family caregivers. Focus group discussions were analysed using content analysis. Results: Nineteen providers from 11 general practices took part in 4 focus group discussions. Participants identified challenges in communication with patients, caregivers and within the professional network. Communication with patients and caregivers focused on non-verbal messages, communicating at an appropriate time and perceiving patient and caregiver as a unit of care. Practice teams perceive themselves as an important part of the healthcare network, but also report difficulties in communication and cooperation with other healthcare providers. Conclusion: Healthcare providers in general practice identified relational challenges in daily primary palliative care with potential implications for EoL care. Communication and collaboration with patients, caregivers and among healthcare providers give opportunities for improving palliative care with a focus on the patient-caregiver dyad. It is insufficient to demand a (professional) support network; existing structures need to be recognized and included into the care. 

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Role of domiciliary and family carers in individualised nutrition support for older adults living in the community

Protein-energy malnutrition is common amongst people aged 65 years and older, has a multifactorial aetiology, and numerous negative outcomes. Domiciliary carers (non-clinical paid carers) and family carers (including family, friends and neighbours) are required to support the increasing demand for in-home assistance with activities of daily living due to the ageing population. This review provides insight into the role of both domiciliary and family carers in providing individualised nutrition support for older, community-dwelling adults with malnutrition. Four electronic databases were searched for intervention studies from database inception to December 2016. Both domiciliary and family carers are well placed to monitor the dietary intake and nutritional status of older adults; to assist with many food-related tasks such as the sourcing and preparation of meals, and assisting with feeding when necessary; and to act as a conduit between the care recipient and formal nutrition professionals such as dietitians. There is moderate evidence to support the role of domiciliary carers in implementing nutrition screening and referral pathways, and emerging evidence suggests they may have a role in malnutrition interventions when supported by health professionals. Moderate evidence also supports the engagement of family carers as part of the nutrition care team for older adults with malnutrition. Interventions such as group education, skill-development workshops and telehealth demonstrate promise and have significantly improved outcomes in older adults with dementia. Further interventional and translational research is required to demonstrate the efficacy of engaging with domiciliary and family carers of older adults in the general community.; Copyright © 2017 Elsevier B.V. All rights reserved.

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How family caregivers help older relatives navigate statutory services at the end of life: A descriptive qualitative study

Background: A key challenge in meeting the palliative care needs of people in advanced age is the multiple healthcare and social service agencies typically involved in their care. The 'patient navigator' model, originally developed in cancer care, is the professional solution most often recommended to address this challenge. However, little attention has been paid, or is known, about the role that family carers play in enabling their dying relatives to negotiate service gaps. Aim: To explore the role family caregivers play in helping people dying in advanced old age navigate health services at the end of life. Design: Qualitative study using semi-structured interviews and analysed via thematic analysis. Setting/participants: A total of 58 interviews were conducted in New Zealand with the family caregivers of 52 deceased older relatives who had been participants in Life and Living in Advanced Age: a Cohort Study in New Zealand. Results: Fragmentation of services was the key concern, causing distress both for the older person and their family caregivers. Carers identified and engaged with appropriate services in order to facilitate care and treatment. Their involvement was not always met by healthcare professionals with respect or regard to their knowledge of the older person's needs. Conclusion: Family caregivers are trying to help their older relatives overcome the limitations of fragmented health systems at the end of life. They are doing so at times by stepping in to perform patient navigator tasks usually conceptualised as a role for statutory services to carry out. Programmes and services need to be implemented that will better support family carers who are acting as care navigators.

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A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers

Purpose: Unpaid care is an important source of support of people with long-term conditions. Interdependence of carers’ and care recipients’ quality of life would be expected due to the relational nature of caregiving. This study aims to explore interdependence of quality of life in carer/care-recipient dyads, especially in relation to mutual interdependence due to social feedback in the caregiving relationship and also the partner effects of one partner’s experience of long-term care support on the other’s outcomes. 

Methods: Using data collected in an interview survey of 264 adults with care support needs and their unpaid carers in England, we employed regression analysis to explore whether there is mutual interdependence of care-related quality of life within carer/care-recipient dyads for three quality of life attributes: Control over daily life, Social participation and Occupation. The influence of factors, including satisfaction with long-term care, were also considered on individuals’ and dyad partners’ care-related quality of life. 

Results: We found mutual interdependence of quality of life at the dyad-level for Control over daily life, but not Occupation or Social participation. A partner effect of care recipients’ satisfaction with long-term care on carers’ Control over daily life was also observed. Higher care recipient satisfaction with care services was associated with higher Control over daily life. By contrast, for Social participation and Occupation, there were only significant effects of care recipients’ satisfaction with long-term care and their own quality of life.

Conclusions:These findings highlight the importance of considering the wider impact beyond the individual of long-term care on quality of life in the evaluation of long-term care policy and practice.

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Alzheimer's Disease: Individuals, Dyads, Communities, and Costs

Alzheimer's disease and related dementias (ADRD) affect over 5 million Americans. Over a typical disease course of 5-10 years, family caregivers provide the majority of the day-to-day hands-on on care for persons with dementia. Most caregivers enter this complex role with little training and inadequate household resources and they are tasked to navigate a fragmented health care system as well as a patchwork of community services. Our nation can and should do more to help family caregivers provide care in the home to their loved ones who suffer from dementia. We will all benefit if we design and implement a better system of care for persons with dementia. We will benefit financially as a nation, we will benefit morally as a community, and in case we have forgotten, we stand to benefit ourselves as we age and face our own aging brain. Building a system of care requires excellent science and engineering, but we also need creative approaches that design systems of care that are available nationwide because they are scalable and affordable. Most importantly, families need our help now. We need to move faster.; © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

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Family-led rehabilitation after stroke in India (ATTEND): a randomised controlled trial

Background: Most people with stroke in India have no access to organised rehabilitation services. The effectiveness of training family members to provide stroke rehabilitation is uncertain. Our primary objective was to determine whether family-led stroke rehabilitation, initiated in hospital and continued at home, would be superior to usual care in a low-resource setting. Methods: The Family-led Rehabilitation after Stroke in India (ATTEND) trial was a prospectively randomised open trial with blinded endpoint done across 14 hospitals in India. Patients aged 18 years or older who had had a stroke within the past month, had residual disability and reasonable expectation of survival, and who had an informal family-nominated caregiver were randomly assigned to intervention or usual care by site coordinators using a secure web-based system with minimisation by site and stroke severity. The family members of participants in the intervention group received additional structured rehabilitation training-including information provision, joint goal setting, carer training, and task-specific training-that was started in hospital and continued at home for up to 2 months. The primary outcome was death or dependency at 6 months, defined by scores 3-6 on the modified Rankin scale (range, 0 [no symptoms] to 6 [death]) as assessed by masked observers. Analyses were by intention to treat. This trial is registered with Clinical Trials Registry-India (CTRI/2013/04/003557), Australian New Zealand Clinical Trials Registry (ACTRN12613000078752), and Universal Trial Number (U1111-1138-6707). Findings: Between Jan 13, 2014, and Feb 12, 2016, 1250 patients were randomly assigned to intervention (n=623) or control (n=627) groups. 33 patients were lost to follow-up (14 intervention, 19 control) and five patients withdrew (two intervention, three control). At 6 months, 285 (47%) of 607 patients in the intervention group and 287 (47%) of 605 controls were dead or dependent (odds ratio 0·98, 95% CI 0·78-1·23, p=0·87). 72 (12%) patients in the intervention group and 86 (14%) in the control group died (p=0·27), and we observed no difference in rehospitalisation (89 [14%]patients in the intervention group vs 82 [13%] in the control group; p=0·56). We also found no difference in total non-fatal events (112 events in 82 [13%] intervention patients vs 110 events in 79 [13%] control patients; p=0·80). Interpretation: Although task shifting is an attractive solution for health-care sustainability, our results do not support investment in new stroke rehabilitation services that shift tasks to family caregivers, unless new evidence emerges. A future avenue of research should be to investigate the effects of task shifting to health-care assistants or team-based community care. Funding: The National Health and Medical Research Council of Australia.

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Re-visioning social work education: an independent review

Norman Lamb, Minister of State for Care and Support at the Department of Health invited the Chair of Skills for Care to undertake this Independent Review, in the context of the changes to social work practice brought about by the Social Work Task Force and Social Work Reform Board, and their own recommendations for social work education. The review is based on evidence invited from as wide a field as possible, from the UK and internationally, of all those who have a stake in the education of social workers, including service users and carers, employers, educationalists, social work practitioners, students and others. Professor David Croisdale-Appleby considers whether social work education is ideally structured to best serve the changing nature of the profession. 

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Costs and consequences for the carers of people with dementia in Ireland

This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.

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Carer experiences of life after stroke – a qualitative analysis

Aims and objectives. Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method. A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43 min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Results. An overarching theme emerged, entitled: ‘lives turned upside-down’. It took time for participants to understand the long-term impacts of stroke. Carers experienced increased caring and domestic workloads alongside reduced participation and altered expectations of life. They found emotional and cognitive changes in their partners particularly distressing, and would have valued more information and help with adjusting to the increased emotional, physical and cognitive workload of caring.

Conclusions. It is important to support carers of people who have survived a stroke in adjusting to their changed lifestyles. This may affect their quality of life as well as sustainability of caring, and requires further research.

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Carers' experiences of assertive outreach services: an exploratory study

Background: Recent government policy has highlighted the needs of family and friends who provide support to mental health service users. Carers of assertive outreach (AO) service users may be particularly in need of support. However, little is known about their experiences and how services can support them. Aim: To explore the experiences of carers of individuals receiving an AO service. Method: Ten participants were interviewed using a semi-structured interview schedule. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results: Participants were positive about the service they and their relatives received from AO teams. They described the service as flexible and responsive to their needs and they had developed close collaborative relationships with AO workers. AO workers were considered by carers to be an extension of their family system. AO interventions helped their relatives to regain independence and enabled participants to feel less burdened by their caring role, thereby improving the carer's quality of life. Conclusions: The unique way in which AO teams engage and work alongside service users and their families is greatly valued by carers.

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Valuing carers: calculating the value of unpaid care

This report updates the estimate of the value of unpaid care published by Carers UK in 2002 in ‘Without Us…? Calculating the value of carers’ support’. Based on data available for the first time at local as well as at national level, and on comprehensive information about the time carers devote to supporting those who need their help, the report reveals just how crucial carers are to the health and social care system and to the UK’s economy. 

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Effectiveness of Physio Acoustic Sound (PAS) therapy in demented nursing home residents with nocturnal restlessness: study protocol for a randomized controlled trial

Background: Many older people with neuropsychiatric disorders such as Alzheimer's disease and frontotemporal dementia suffer from sleeping problems and often show nocturnal restlessness. Professionals and informal carers face considerable problems in solving these problems. Attempts to diminish these problems with medication in a safe and responsible manner have proven hardly effective or not effective at all. Therefore, nowadays the focus lies more on non-pharmacological solutions, for example by influencing environmental factors. There are indications that treatment with low-frequency acoustic vibrations, that is Physio Acoustic Sound (PAS) therapy, has a positive effect on sleeping problems. Therefore we study the effectiveness of PAS therapy in demented patients with nocturnal restlessness.

Methods: In a randomized clinical trial, 66 nursing home patients will be divided into two groups: an intervention group and a control group. For both groups nocturnal restlessness will be measured with actiwatches during a period of six weeks. In addition, a sleep diary will be filled in. For the intervention group the baseline will be assessed, in the first two weeks, reflecting the existing situation regarding nocturnal restlessness. In the next two weeks, this group will sleep on a bed identical to their own, but with a mattress containing an in-built PAS device. As soon as the patient is lying in bed, the computer programme inducing the vibrations will be switched on for the duration of 30 min. In the last two weeks, the wash-out period, the measurements of the intervention group are continued, without the PAS intervention.During the total study period, other relevant data of all the implied patients will be recorded systematically and continuously, for example patient characteristics (data from patient files), the type and seriousness of the dementia, occurrence of neuropsychiatric symptoms during the research period, and the occurrence of intermittent co-morbidity.

Discussion: If PAS therapy turns out to be effective, it can be of added value to the treatment of nocturnal restlessness in demented patients. Non-pharmacological PAS therapy is not only safe and patient-friendly, but it can also be widely used in a simple and relatively inexpensive way, both in institutions such as nursing homes and residential homes for the elderly, and at home. Ultimately, this may lead to a decrease in the frequent and still common use of psychotropic drugs. In addition, care needs of demented patients also may decrease as well as the number of preventable admissions to care institutions.

Trial registration: Netherlands Trial Register (NTR): NTR3242

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Personalisation for older people: supported housing

Lifelong couple Brian and Olive live in specialist supported accommodation. Brian has been Olive’s carer since she developed dementia. The housing complex where they live is managed as a community in which each individual is valued for the contribution they can make. The manager explains how important it is for carers as well as the person with dementia to maintain their individual identity and role as partner. The value of having a flexible, responsive individual care plan is also emphasised in the film. Richard, whose mother has dementia, explains how important it was for his mum and dad to be able to stay living together, even when his mum’s needs increased. The film concludes by stating that having well trained and selected staff is vital for achieving personalisation.

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Time costs associated with informal care for colorectal cancer: an investigation of the impact of alternative valuation methods

Background: A societal perspective in economic evaluation necessitates that all resources associated with a disease or intervention should be valued; however, informal care time costs are rarely considered.

Objective: We estimated time allocated to care by informal carers of colorectal cancer survivors; and investigated the impact of applying alternative valuation methods to this time.

Methods: Colorectal cancer cases (ICD10 C18-C20) diagnosed 6–30 months previously and identified from the National Cancer Registry Ireland were invited to provide details of informal carers. Carers completed a postal questionnaire. Time estimates per week associated with hospital-related and domestic-related care activities were collected for two phases: diagnosis and initial treatment (initial 3 months) and ongoing care (previous 30 days). Seven valuation scenarios, based on variants of the opportunity cost approach (OCA), and the proxy good approach (PGA), were considered. The base-case was OCA with all carer time valued at the average national wage.

Results: We received 154 completed questionnaires (response rate = 68 %). Average weekly time allocated to caring was 42.5 h in the diagnosis and initial treatment phase and 16.9 h in the ongoing care phase. Under the base-case, average weekly time costs were €295 (95 % CI 255–344) for hospital-related activities and €630 (95 % CI 543–739) for domestic-related activities in the diagnosis and initial treatment phase and €359 (95 % CI 293–434) in the ongoing care phase. PGA estimates were 23 % below the base-case. Only one alternative scenario (occupation and gender-specific wages for carers in paid work and replacement wages for non-working carers) surpassed base-case costs, and the difference was modest.

Conclusions: Overall, significant time is associated with informal caring in colorectal cancer. Different time valuation methods can produce quite different cost estimates. A standardised methodology for estimating informal care costs would facilitate better integration of these into economic evaluations.

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A bulletin on the personal well-being of people who need care and support and carers who need support, 2014-15

This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only. 

Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.

Original document (pdf) on Welsh Government website.

An exploration of international innovation in service user involvement across three countries

This film is from a project which examines social work from the perspective of service users and carers across three countries, Northern Ireland, Slovenia and Spain. Social work students from Queen’s University, Belfast, Northern Ireland, the University of Ljubljana, Slovenia and the University of Alicante, Spain interviewed service users and carers on film using seven questions developed to examine key areas of social work skills, knowledge and values. The service users and carers were all already working across the three universities and had prior experience of involvement in social work education. Each country developed its own film and the three films were then edited together to produce a film where all of the service users and carers can be seen responding to the seven questions. The authors believe the films will help student social workers to understand social work knowledge, skills and values in an international context.

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Worries and problems of young carers: issues for mental health

This paper reports on a research study which explored the worries and problems of young carers in Edinburgh. Sixty-one young carers took part in the study, conducted between April and June 2002. Findings indicate that young carers identify significant worries and problems in relation to their well-being, and that these come over and above any 'normal' adolescent difficulties. It is suggested that these findings may have important implications for young carers' mental health, now and in the future, and contain important lessons for child and family social work in general.

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Carers' quality of life and experiences of adult social care support in England

Informal carers make a vital contribution to the well-being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.

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Participation: (re)interpretation of a core value in the Czech social care of the frail elderly

A variety of non-fiscal input could be brought into discussion regarding the redesign and/or reform of the social care system for the frail elderly in the Czech Republic. It should be based on a deeper understanding of different stakeholders' interpretations of "Participation" one of the core values of the European social model. The study was based on secondary data collected through semi-structured interviews with "informal carers" (family members, non-professionals), secondary data collected through international focus-groups; participants were recruited from master-degree students of "social and health care management" using qualitative content analysis and data collected through document content analysis. With an aging European population, the intergenerational participation appears disputable (not axiomatic) with two generations of frail seniors in one family. Redesigned and/or new kinds of "prevention" services should be in place, possibly refocusing its effort to different target groups to support the perspective of “qualified customer behaviour”. It offers possible direction of further research.

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Evaluation of a problem-solving (PS) techniques-based intervention for informal carers of patients with dementia receiving in-home care

The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.

56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.

Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.

PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.

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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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The recognition of and response to dementia in the community: lessons for professional development

Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. This report describes the ways in which learning tasks were understood and articulated by 774 community-based professionals from different disciplines, working in nominal groups in 24 settings across the United Kingdom, and explores how these groups set about identifying their learning needs. These groups focused on being insufficiently skilled to carry out educational functions, on solving problems of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups’ solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners’ own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.

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Can Fire and Rescue Services and the National Health Service work together to improve the safety and wellbeing of vulnerable older people? Design of a proof of concept study

Background: Older adults are at increased risk both of falling and of experiencing accidental domestic fire. In addition to advanced age, these adverse events share the risk factors of balance or mobility problems, cognitive impairment and socioeconomic deprivation. For both events, the consequences include significant injury and death, and considerable socioeconomic costs for the individual and informal carers, as well as for emergency services, health and social care agencies. Secondary prevention services for older people who have fallen or who are identifiable as being at high risk of falling include NHS Falls clinics, where a multidisciplinary team offers an individualised multifactorial targeted intervention including strength and balance exercise programmes, medication changes and home hazard modification. A similar preventative approach is employed by most Fire and Rescue Services who conduct Home Fire Safety Visits to assess and, if necessary, remedy domestic fire risk, fit free smoke alarms with instruction for use and maintenance, and plan an escape route. We propose that the similarity of population at risk, location, specific risk factors and the commonality of preventative approaches employed could offer net gains in terms of feasibility, effectiveness and acceptability if activities within these two preventative approaches were to be combined.

Methods/Design: This prospective proof of concept study, currently being conducted in two London boroughs, (Southwark and Lambeth) aims to reduce the incidence of both fires and falls in community-dwelling older adults. It comprises two concurrent 12-month interventions: the integration of 1) fall risk assessments into the Brigade's Home Fire Safety Visit and 2) fire risk assessments into Falls services by inviting older clinic attendees to book a Visit. Our primary objective is to examine the feasibility and effectiveness of these interventions. Furthermore, we are evaluating their acceptability and value to key stakeholders and services users.

Discussion: If our approach proves feasible and the risk assessment is both effective and acceptable, we envisage advocating a partnership model of working more broadly to fire and rescue services and health services in Britain, such that effective integration of preventative services for older people becomes routine for an ageing population.

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Standardization of the Maristán Scale of Informal Care in people with schizophrenia and other psychoses

OBJECTIVE: No instrument has been developed and validated across cultures to measure the degree of support provided by informal carers to people with schizophrenia. We aimed to develop such a measure.

METHOD: The Maristán Scale of Informal Care was developed directly from the views of patients with schizophrenia in six countries. Face-to-face interviews were carried out with participants and 103 were repeated after 30 days. Principal Axis Factoring followed by Promax rotation evaluated the structure of the scale. Horn's parallel combined with bootstrapping determined the number of factors. Cronbach's alpha estimated the scale's internal consistency and intra-class correlation its test-retest reliability.

RESULTS: A total of 164 interviews were undertaken, 103 with re-test. The Horn's Parallel Analysis and the analysis of the Promax rotation revealed one factor. Cronbach's alpha was 0.89. Intra-class correlation coefficient was 0.56 (95% CI 0.42-0.68) and this increased to 0.64 (95% CI 0.51-0.75) after removing two outlying values. Patients from Argentina recorded the lowest scores (poor informal support/care).

CONCLUSION: The Maristán Scale of Informal Care is a reliable instrument to assess the degree of support provided by informal carers to people with schizophrenia across cultures. A confirmatory factor analysis is needed to evaluate the stability of its factor structure. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia

BACKGROUND: Deciding how to treat patients with end-stage dementia developing potentially fatal events has long been contentious. Under expected new legislation the role of carers is likely to increase. Old age psychiatrists frequently have to decide between active or palliative approaches to such patients. Little is known concerning the comparative attitudes of carers and old age psychiatrists. This research examined how their attitudes differed.

METHODS: A Likert scale attitudinal questionnaire was designed following a literature review and was initially distributed to a pilot group of medical students to aid in establishing reliability and validity. Subsequently it was sent to all members of the local Alzheimer's Society Branch and all the old age psychiatrists in the health region. Its validity and reliability were investigated using factor analysis and test-retest reliability. Between group comparisons were then made using the students t-test and analysis of variance.

RESULTS: 148 carers and 34 clinicians responded. Factor analysis and test-retest analysis of students' responses validated six questions, which grouped into two factors, relating to active treatment and patient-centred ethics. Between group comparisons revealed significant differences between carers' and clinicians' attitudes in these areas. Clinicians favoured active treatment of potentially fatal events in end-stage dementia less than carers who more significantly valued patient-centred issues such as dying with dignity, the patient's best interests and the patient's wishes.

CONCLUSIONS: Old age psychiatrists and carers significantly differed in their attitudes towards treatment of potentially fatal events in end-stage dementia and this may impact on decision-making. Considerably more clinician/carer debate and dialogue seems needed.

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Putting people first: a shared vision and commitment to the transformation of adult social care

Across Government, the shared ambition is to put people first through a radical reform of public services, enabling people to live their own lives as they wish, confident that services are of high quality, are safe and promote their own individual needs for independence, well-being and dignity. This ministerial concordat establishes the collaboration between central and local government, the sector's professional leadership, providers and the regulator.  It sets out the shared aims and values which will guide the transformation of adult social care, and recognises that the sector will work across shared agendas with users and carers to transform people’s experience of local support and services.

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The influence of social support on caregiver coping

Investigations into the act of proving care to a dementing family member typically approach the phenomenon from a stress/burden paradigm. Many studies have sought to highlight the relationship between of a range of dementia care factors (such as illness duration, patient symptoms/characteristics, service provision, etc.) and the experience of caregiver stress. Caregiving a spouse with dementing illness is complex and multidimensional (Gubrium, 1995) it is therefore not surprising that the vast majority of stressor-based approaches, though very revealing, have been largely equivocal in their findings. The relationship between the social support of family and friends and caregiver coping is no exception and therefore remains essentially unclear particularly in terms of its contribution in ameliorating stress (Thompson et al, 1993). Caregiver studies do however consistently highlight the pathogenic qualities of coping with an experience in which 'families are faced with often overwhelming and uncontrollable stress than can take a toll on their emotional health and well-being' (Zarit et al, 1998; Bourgeois et al, 1996). This article, emanating from a PhD study into caregiver coping (Upton, 2001), illuminates the study of caregiving from a different perspective. It highlights and describes how phenomenological exploration deepens our understanding of how and why spouse caregivers cope and uses the influence of social support as an exemplar of the value and need for such exploration both for its own sake and also to inform service providers. The results revealed a universal phenomenon of psycho-physical distancing by family and friends affecting all forty-six spouse caregivers included in this study. The implications of these finding are discussed along with what constituted social support for these carers. Other phenomenological insights are revealed, not least how the individual caregiver's relationship to time, space and their own identity shaped their caregiving experiences.

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From values to action: the Chief Nursing Officer’s review of mental health nursing

This document sets out recommendations for guiding the development of mental health nursing, with the core aim of improving the outcomes and experience of care for service users and carers.

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Smarter spending for better care: ten ideas to make better use of social care funding for older people and carers

With the budgetary pressures facing local authorities in England, it is important to identify how better value for money could be achieved from current spending on social care. The drive for efficiencies should not be at the detriment of older people with care and support needs and their families and carers. This document provides 10 ideas to make better use of current social care funding while improving quality of care and experiences for older people and their carers. It argues that better value for money could be achieved by re-focusing resources on: providing easily accessible advice, information and advocacy; recognising the key role that families and carers play; specialist independent financial advice; supporting people to stay or move where they want to be in later life; integration of housing, health and care; new technology (telecare and telehealth); personalisation (making sure care is focused on the person); prevention, early intervention and homechecks; volunteering and intergenerational work; and dementia drugs and treatments. These ideas could result in the delivery of better care at the same time as saving up to £3 billion.

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An examination of the impact of the Maudsley eating disorder collaborative care skills workshops on the well being of carers; A pilot study.

Background: Carers of people with eating disorders experience high levels of distress due to the difficulties in their care giving role and their perceived lack of resources to help their relative. This paper describes an intervention where some of the skills used by specialist nurses and other staff from an eating disorder intensive care setting are taught to carers to improve their sense of competency and alleviate their distress. The aim of this study was to examine the feasibility and acceptability of “the Maudsley eating disorder collaborative care skills workshops” programme among care givers and whether the difficulties and distress involved in caring for a person with an eating disorder were reduced.

Methods: Thirty-five carers from 30 families were invited to participate in this programme, which consisted of a total of six workshops, delivered in 2-h sessions over 3 months. Assessments were undertaken at baseline (T0), at the end of the workshops (T1) and 3 months later (T2).

Results: The level of carer distress (GHQ) fell significantly after the intervention. The level of general care giving burden (ECI) also reduced as did the specific difficulties caused by eating disorder symptoms (EDSIS). These changes were maintained over time (T2).

Conclusions: The transfer of specialist skills within the programme was highly valued by the carers and lessened their stress and care giving difficulties.

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Valuing Carers 2011 - Calculating the value of carers' support

This paper updates the estimate of the value of carers’ support published by Carers UK in 2007 in Valuing carers – calculating the value of carers’ support.

It estimates the economic value of the contribution made by carers in the UK as a remarkable £119 billion per year – considerably more than the annual cost of all aspects of the NHS.

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Association between informal caregiving and cellular aging in the Survey of the Health of Wisconsin: The role of caregiving characteristics, stress, and strain

The pathophysiological consequences of caregiving have not been fully elucidated. We evaluated how caregiving, stress, and caregiver strain were associated with shorter relative telomere length (RTL), a marker of cellular aging. Caregivers (n = 240) and some noncaregivers (n = 98) in the 2008–2010 Survey of the Health of Wisconsin, comprising a representative sample of Wisconsin adults aged 21–74 years, reported their sociodemographic, health, and psychological characteristics. RTL was assayed from blood or saliva samples. Median T and S values were used to determine the telomere-to-single copy gene ratio (T/S) for each sample, and log(T/S) was used as the dependent variable in analyses. Multivariable generalized additive models showed that RTL did not differ between caregivers and noncaregivers (difference in log(T/S) = −0.03; P > 0.05), but moderate-to-high levels of stress versus low stress were associated with longer RTL (difference = 0.15; P = 0.04). Among caregivers, more hours per week of care, caring for a young person, and greater strain were associated with shorter RTL (P < 0.05). Caregivers with discordant levels of stress and strain (i.e., low perceived stress/high strain) compared with low stress/low strain had the shortest RTL (difference = −0.24; P = 0.02, Pinteraction = 0.13), corresponding to approximately 10–15 additional years of aging. Caregivers with these characteristics may be at increased risk for accelerated aging. Future work is necessary to better elucidate these relationships and develop interventions to improve the long-term health and well-being of caregivers.

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Including families and carers : an evaluation of the family liaison service on inpatient psychiatric wards in Somerset, UK

Purpose– National mental health policies in the UK have a common theme of seeking to develop working partnerships between people who use mental health services, their families and carers and professionals. In Somerset, following a staff training programme, a Family Liaison Service has been developed whereby systemically trained staff work alongside inpatient staff to hold family meetings as part of the assessment and admission process on all wards for working age adults and older people. This article aims to focus on this initiative.

Design/methodology/approach – The article considers the development of the Family Liaison Service and evaluates its progress based on audit data, feedback from families using the service, and a survey of staff experience. Issues raised in developing family inclusive services are discussed.

Findings – Evaluation of the service suggests that, although there is still progress to be made, considerable success has been achieved in embedding the service on inpatient units with a substantial increase in meetings held between staff and families. Feedback from families is positive and staff report increased confidence in engaging with families and carers.

Originality/value – This article describes a transferable model for the implementation of national policy to develop working partnerships with families and carers in mainstream mental health services.

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Integrating people with dementia and their carers into service design

Purpose – The purpose of this paper is to reflect upon the method of using a participatory action research (PAR) approach and offer some insight into the processes of integrated working with service users and carers. The Public Bodies (Joint Working) (Scotland) Bill, 2013 (The Scottish Government, 2013) is focused on integrated and partnership working within the systems of health and social care. The author begins with a person-centred approach and explore the value of placing service user engagement for successful integrated practice. Through these reflections on PAR, the author offers some new lessons about what integration means to practitioners at the front line of service delivery.

Design/methodology/approach – This paper offers insights from a practitioner-research project which the author conducted within the author ' s own practice. It is a reflection on the process of using PAR with five people with dementia and their carers in a research project on the use of music to increase wellbeing for both the person with dementia and their carer. PAR helps to gain service user views but supports service users and providers to work in an integrated way.

Findings – This paper offers insights from a practitioner-research project which the author conducted within the author ' s own practice. It is a reflection on the process of using PAR with five people with dementia and their carers in a research project on the use of music to increase wellbeing for both the person with dementia and their carer. PAR helps to gain service user views but supports service users and providers to work in an integrated way.

Originality/value – A person-centred approach to service user participation in the research process has valuable insights for the integration of service users in the design and delivery of health and social care. The insights offered here highlight the complex processes which make-up effective engagement with service users and carers. It offers concrete details on the challenges which practitioners may face when they work to integrate service users and carers into the planning process. It also highlights the benefits of shared problem-solving and control. Practitioners already play an invaluable role in providing integrated care. This paper serves a reminder of much of what we already know and do. It also asks us to reconsider the focus of integration as a person-centred process.

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A structured training programme for caregivers of inpatients after stroke (TRACS) : a cluster randomised controlled trial and cost-effectiveness analysis

Background: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke.

Methods: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with, number ISRCTN 49208824.

Findings: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27·4 in the intervention group versus 27·6 in the control group, difference –0·2 points [95% CI –3·0 to 2·5], p value=0·866, ICC=0·027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45·5 in the intervention group versus 45·0 in the control group, difference 0·5 points [95% CI –1·7 to 2·7], p value=0·660, ICC=0·013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were £13 127 for the intervention group and £12 471 for the control group; adjusted mean difference £1243 [95% CI –1533 to 4019]; p value=0·380). Probabilities of cost-effectiveness based on QALYs were low.

Interpretation: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training.

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New networked technologies and carers of people with dementia: an interview study

Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.

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Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study

Background: Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers.

Methods: Prospective study following cancer patients (n = 662) receiving support from a palliative care case manager in Dutch primary care, using registration forms filled out by the case manager after contact with the patient and/or informal carer. In backward linear regression, the association was studied between patient or organizational characteristics and the number of contacts and the number of times conversation topics were discussed.

Results: Organizational characteristics add more to explained variability in data than patient characteristics. Case managers provide support in a flexible manner with regard to the number, mode, persons present, and duration of contacts. Support covered all domains of palliative care, with most attention given to physical complaints, life expectancy and psychological aspects.

Conclusions: Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care.

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Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service

Aims and objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.

Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources.

Design: A qualitative study.

Methods: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis.

Results: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life.

Conclusions: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments.

Relevance to clinical practice: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.

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Care-giving as a Canadian-Vietnamese tradition: 'it's like eating, you just do it'

The objective of this study was to examine how Vietnamese family caregivers (FCGs) perceive, manage and experience end-of-life care-giving for seriously ill family members. Using an instrumental case study design, this longitudinal qualitative research employed the use of cultural brokers/language interpreters to help ensure that the research was conducted in a culturally-appropriate manner. Participants (n = 18) discussed their experiences of care-giving within the context of a traditional cultural framework, which was found to influence their motivations and approaches to care-giving, as well as their propensities towards the use of various supports and services. The study was carried out in southern Ontario, Canada, and participants were providing home-based care-giving in the community. Data were collected throughout 2010 and 2011. The ways in which care-giving was perceived and expressed are reflected in three themes: (i) Natural: identity and care work; (ii) Intentional: whole-person care; and (iii) Intensive: standards, struggle and the context of care. This research confirms the need for culturally-appropriate services and supports while illustrating that Vietnamese FCGs not only value, but are also likely to use healthcare and social services if they are language-accessible, built on trust and demonstrate respect for their values as individuals, regardless of culture.

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Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.

METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.

RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.

CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.

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Principles of person centred care: part 2

Designed exclusively for those providing care within the care home, this two part title introduces carers to the values that underpin person-centred care. It assists them to develop their understanding of how principles of care should be reflected in their day-to-day practices by exploring the values of individuality, rights, choice, privacy, independence, dignity, respect and partnership. It goes on to look at the right service users have to take risks in their lives and how the care plan and risk assessment can assist to protect individuals from harm

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A Qualitative Investigation of Health Care Professionals', Patients' and Partners' Views on Psychosocial Issues and Related Interventions for Couples Coping with Cancer

Introduction: There is growing evidence that cancer affects couples as an interdependent system and that couple-based psychosocial interventions are efficacious in reducing distress and improving coping skills. However, adoption of a couples-focused approach into cancer care is limited. Previous research has shown that patients and partners hold differing views from health care professionals (HCPs) regarding their psychosocial needs, and HCPs from different disciplines also hold divergent views regarding couples’ psychosocial needs. This study aimed to explore the perspectives of HCPs and couples on the provision of couple-focused psychosocial care in routine cancer services.

Methods: A qualitative study using semi-structured interviews was undertaken with 20 HCPs (medical oncologists, nurses, psycho-oncology professionals) and 20 couples where one member had been diagnosed with cancer (breast, prostate, head/neck, bowel, multiple myeloma). Interviews were analysed using the framework approach.

Results: Three core themes were identified: “How Do Couples Cope with Cancer?” emphasised the positive and negative coping strategies used by couples, and highlighted that partners perceived a lack of engagement by HCPs. “What Is Couple-focused Psychosocial Care for People with Cancer?” described varying perspectives regarding the value of couple-focused psychosocial care and variation in the types of support couples need among HCPs and couples. Whereas most couples did not perceive a need for specialist couple-focused support and interventions, most HCPs felt couple-focused psychosocial care was necessary. “How Can Couple-Focused Psychosocial Care be Improved?” described couples’ view of a need for better provision of information, and the importance of their relationship with oncology clinicians. HCPs identified a lack of confidence in responding to the emotional needs of couples, and barriers to providing psychosocial care, including challenges identifying distress (through screening) and referring distressed individuals/couples for specialist assessment.

Conclusions: The three core themes revealed discrepancies about couple-focused psychosocial care between HCPs and couples, and HCPs from different professional backgrounds, and several barriers to the provision of psychosocial care for couples. Despite HCPs and couples acknowledging that a couple-focused approach to psycho-social support was potentially beneficial, the majority of couples did not feel they needed specific couple-focused interventions. These issues and recommendations for future research are discussed.

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Adding value: carers as drivers of social change

Unsung heroes, hearts of gold and other cliches get in the way of the real message about carers. Carers look after family, friends or partners in help because they are ill, frail or have a disability. The care they provide is unpaid seven days a week, 365 days of the year.

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Information needs of the informal carers of women treated for breast cancer

Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role.

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Family placement schemes for adult persons with intellectual disabilities living with elderly carers

Few family placement schemes involve adult persons, and rarely have they been targeted at older carers. Twenty-five carers, aged 55 years and over, of people with intellectual disabilities using one of two placement schemes in Northern Ireland were studied, along with a further 20 carers recommended for these schemes. Semi-structured individual interviews were used to obtain the views of carers, people with intellectual disabilities and placement providers. The placement schemes were very favourably received. Carers welcomed the break and valued the relationship with the placement provider. Individuals with disability reported greater opportunities to participate in activities. Placement providers were very satisfied with the way the schemes operated: the main complaint was the low level of payments. Key factors affecting the further development of services include recruitment of male providers, registration issues, training of providers and the difficulty in meeting the needs of multiply disabled persons.

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Good practice in European integration: Lessons from the AIDA Project

Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project ( This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies

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Enhanced dementia practice for social workers

This online resource is primarily for Newly Qualified Social Workers, and existing social workers, who work in adult care and community care settings in Scotland. The main sections cover: understanding dementia; personal outcomes: valued relationships and community connections; working with carers; health and wellbeing; rights, support and protection; and supportive environments. Each section includes a mixture of personal stories, filmed drama, quotations, key facts, resource material and activities. The resource includes the personal testimonies of members of Scottish Dementia Working Group (SDWG) and National Dementia Carers Action Network (NDCAN). The resource is one a range of resources emerging from 'Promoting Excellence: a framework for all health and social services staff working with people with dementia, their families and carers' in Scotland.

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Recognised, valued and supported: next steps for the carers strategy: response to the call for views

In July 2010, the Department of Health published a call for views on the key priorities, supported wherever possible by evidence of good practice that will have the greatest impact on improving carers’ lives in the next four years. In total, 764 responses were received. This strategy document identifies the actions that the Government will take over the next four years to support its priorities to ensure the best possible outcomes for carers and those they support, including: supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages; enabling those with caring responsibilities to fulfil their educational and employment potential; personalised support both for carers and those they support, enabling them to have a family and community life; and supporting carers to remain mentally and physically well.

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A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service

Objective: To investigate stroke patients’ and carers’ perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.

Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.

Setting: Community stroke services in North Nottinghamshire, UK.

Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.

Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.

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Costs and quality of life associated with acute upper gastrointestinal bleeding in the UK: cohort analysis of patients in a cluster randomised trial

Objectives Data on costs associated with acute upper gastrointestinal bleeding (AUGIB) are scarce. We provide estimates of UK healthcare costs, indirect costs and health-related quality of life (HRQoL) for patients presenting to hospital with AUGIB.

Setting Six UK university hospitals with >20 AUGIB admissions per month, >400 adult beds, 24 h endoscopy, and on-site access to intensive care and surgery.

Participants 936 patients aged ≥18 years, admitted with AUGIB, and enrolled between August 2012 and March 2013 in the TRIGGER trial of AUGIB comparing restrictive versus liberal red blood cell (RBC) transfusion thresholds.

Primary and secondary outcome measures Healthcare resource use during hospitalisation and postdischarge up to 28  days, unpaid informal care, time away from paid employment and HRQoL using the EuroQol EQ-5D at 28  days were measured prospectively. National unit costs were used to value resource use. Initial in-hospital treatment costs were upscaled to a UK level.

Results Mean initial in-hospital costs were £2458 (SE=£216) per patient. Inpatient bed days, endoscopy and RBC transfusions were key cost drivers. Postdischarge healthcare costs were £391 (£44) per patient. One-third of patients received unpaid informal care and the quarter in paid employment required time away from work. Mean HRQoL for survivors was 0.74. Annual initial inhospital treatment cost for all AUGIB cases in the UK was estimated to be £155.5 million, with exploratory analyses of the incremental costs of treating hospitalised patients developing AUGIB generating figures of between £143 million and £168 million.

Conclusions AUGIB is a large burden for UK hospitals with inpatient stay, endoscopy and RBC transfusions as the main cost drivers. It is anticipated that this work will enable quantification of the impact of cost reduction strategies in AUGIB and will inform economic analyses of novel or existing interventions for AUGIB.

Trial registration number ISRCTN85757829 and NCT02105532.

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Communities as co-producers in integrated care

Integrated care has become too much a professionals' concept, in research and theory development, as well as in practice, especially in high-income countries. The current debate on integrated care is dominated by norms and values of professionals, while most of the care is provided by non-professionals. The paradigms of integrated care for people with complex needs need to be reconsidered. It is argued that non-professional care and care by local communities need to be incorporated as a resource and a co-producer of care. It seems fair to assume that the community as such can take a more prominent role in organising and delivering health and long-term care. This implies redefining professional and non-professional responsibilities and boundaries. The boundary between public and private space is losing its significance, as is the distinction between formal and non-formal care. It also requires renegotiating and transforming organisational boundaries. This has consequences for legislation, funding and professional qualifications, as well as for management and governance. It challenges current professional identities as well as identities of service users, their informal carers and citizens. It may also require new types of funding, including non-monetary currencies, time-sharing and social impact bonds. The challenge is that big, that it needs to be addressed at its smallest scale: the citizen in his social network and local community, being co-producer of really integrated care. 

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Extended safety and support systems for people with dementia living at home

Purpose – The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012) conducted in 24 municipalities.

Design/methodology/approach – It is a descriptive intervention study with a pre-post test design. Questionnaires were administered to pwd, carers and professionals at the outset and eight months later. ESS logging data were analyzed.

Findings – ESS usage rates varied widely. A total of 650 alerts were triggered, mainly when the pwd was outdoors. Activities were reduced amongst pwd, most likely due to a progression of their disease. Carers noted that pwd were more independent than previously on those occasions when they engaged in outdoor activities. Staff considered that nearly half of pwd could remain living at home due to the ESS, compared with a third amongst carers. In total, 50 per cent of carers felt it was justified to equip their relative with an ESS without their explicit consent, compared to one in eight staff.

Research limitations/implications – A limitation is the amount of missing data and high drop- out rates. Researchers should recruit pwd earlier in their illness trajectory. A mixed-methods approach to data collection is advisable.

Practical implications – Carers played a crucial role in the adoption of ESS. Staff training/supervision about assistive devices and services is recommended.

Social implications – Overall, use of ESS for pwd living at home was not an ethical problem.

Originality/value – The study included key stakeholder groups and a detailed ethical analysis was conducted.

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Participants' experiences of hospital-based peer support groups for stroke patients and carers

Purpose: The aim was to examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during hospital rehabilitation. Methods: Semi-structured interviews and questionnaires were analysed by inductive thematic analysis. Participants also answered a standardised Therapeutic Factors Inventory (TFI). Results: Five superordinate themes emerged for patients, carers and volunteer supporters. Three themes related to group processes; ‘practical issues’ (five subthemes), ‘staff presence’, ‘similarity-difference’, and comparison with other group members. ‘Value of peers’ (five subthemes) described beneficial outcomes. The ‘similarity-difference’ theme and four subthemes under ‘value of peers’ were related to items from the TFI which drew agreement from most participants. The supporters had some unique themes; two were concerned with group organisation, one was the experience of ‘being helpful to others’ and one described the experiences of training. As well as its links with themes, agreement with TFI items revealed experiences that did not emerge as themes; feeling secure, expressing emotions and increased independence. Conclusions: Participation in the group was experienced as beneficial by participants. Benefits included helpful information, advice, making new connections and increased awareness of stroke. Participants identified important group processes such as upward and downward comparison. Responses to the TFI suggested that attendance brought therapeutic gains.

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Reconsidering the term 'carer': a critique of the universal adoption of the term 'carer'

This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’.

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Providing Informal Care in Terminal Illness: An Analysis of Preferences for Support Using a Discrete Choice Experiment

Background: The trend for terminally ill patients to receive much of their end-of-life care at home necessitates the design of services to facilitate this. Care at home also requires that informal care be provided by family members and friends. This study investigated informal carers’ preferences for support services to aid the development of end-of-life health care services. Methods: This cross-sectional study used 2 discrete choice experiments to ascertain the preferences of carers supporting patients with different levels of care need, determined by the assistance needed with personal care and labeled High Care (HC) and Low Care (LC). The sample included 168 informal carers of people receiving palliative care at home from 2 palliative care services in Sydney, Australia. Data were collected in face-to-face interviews; carers chose between 2 hypothetical plans of support services and their current services. Data were analyzed with generalized multinomial logit models that were used to calculate the impact of each attribute on the probability of a carer choosing a service plan. Results: Preferred support included nursing services; the probability of choosing a plan increased significantly if it included nurse home visits and phone advice (P < 0.001). HC carers also wanted doctor home visits, home respite, and help with personal care (P < 0.05), and LC carers wanted help with household tasks, transport, and a case coordinator (P < 0.001). On average, both groups of carers preferred their current services, but this varied with characteristics of the carer and the caregiving situation. Conclusions:The most valued services are those that support carers in their caregiving role; however, supportive care preferences vary with the different circumstances of patients and carers.

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Positive and Negative Interactions With Health Professionals

Background: Empathic and informative interactions with health professionals are important for the well-being of people with cancer. However, there is a dearth of research examining the construction and experience of interactions with health professionals from the perspective of informal cancer carers.

Objective: The aim of this study was to explore how cancer carers subjectively position their experiences of interactions with health professionals, in particular, their construction of experiences as positive or negative, and the perceived consequences of such interactions. Positioning theory is used to examine how the sociomedical construction of health professionals shapes carers' experiences of interactions with them.

Method: Semistructured interviews were carried out with 53 informal cancer carers across a range of cancer types and stages, analyzed using thematic decomposition.

Results: Carers positioned positive interactions as those involving health professionals who were warm and genuine, accessible and approachable, and who made carers feel accepted and comfortable. In the case of allied health professionals, the provision of a space for carers' cathartic release was also constructed positively. Negative interactions were positioned as those involving poor communication and a lack of empathy, poor or absent information provision, and absence of guidance about additional support.

Conclusions: Positive experiences with health professionals were positioned by carers as leading to feelings of empowerment, value, and recognition, and negative interactions as leading to distress, anger, frustration, and feelings of isolation.

Implications for Practice: It is important for health professionals to be supportive of carers' needs, to communicate in an empathic manner, to be approachable and accessible, and to recognize carers needs and concerns.

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Carers strategy: second national action plan 2014 - 2016

Summarises the Government's progress in supporting carers since the publication of Recognised, valued and supported: next steps for the Carers Strategy' in 2010. It provides an overview of evidence gathered over the last few years and explains the main achievements in recognising and supporting carers during that time. It focuses specifically on progress in four priority areas: early identification and recognition of carers; realising and releasing potential and enabling carers to fulfil their educational and employment potential; providing support to enable carers to have a family and community life alongside caring; and supporting carers to stay mentally and physically well. The report also identifies key actions for the Government for the next 2 years. Examples of initiatives and good practice are included throughout.

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Who's going to care?

This chapter explores the provision of care and considers possible future developments and the challenges around provision. We begin with a discussion of human resources, posing the question of whether the UK can satisfy the growing demand for carers, both informal and professional. We specifically examine the different types of carer: the self-carer, informal carers and professionals – social carers, nurses, and doctors, and the implications for health and social care policy and consider the implications for these carer roles in society. We also look at current policy on care in the UK. 

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On-line information and registration with services : patterns of support for carers in England

Purpose – The paper aims to ascertain how local authorities and other services are responding to central government strategies to make support for family carers a priority.

Design/methodology/approach – A web-based audit of local authority public information for carers was undertaken (n=50). The sample covered different parts of England and different local authority types.

Findings – A small minority of local authority web sites mention that they operated Carers’ Registers. Overall local authorities offer different resources to carers, ranging from discounts in the local area to access to emergency card registration. Some use online information as a communication channel. Overall local authority online information for carers seems to be variable in quality, accessibility and purpose. We conclude that growth in the collection of information by primary care services in England risks duplicating some of the functions of, and problems with, local authority activities. Local commissioning should minimise confusion and make optimal use of carers’ information. Carers should not have to navigate confusing, variable, parallel systems and outreach is needed for those who do not use electronic media, such as some older carers.

Research limitations/implications – This was a small-scale study nested within a larger project. It is possible that the web sites we interrogated were atypical, although we did take steps to prevent this.

Originality/value – The study's strength lies in its originality of approach undertaking a specific audit of material that is publicly available and reflecting on a subject that has not previously been explored in the context of information for carers.

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Electronic tracking for people with dementia who get lost outside the home: a study of the experience of familial carers

Purpose: The study aimed to elicit a description of GPS (global positioning system) tracking use in the care of people with dementia in domestic settings and to generate hypotheses about impact.

Procedures: Users were recruited through a commercial provider. Qualitative interviews with 10 carers were completed to generate an in-depth description of how the devices were used and the perceived impact. A questionnaire was administered to ascertain sample characteristics.

Findings: Most carers preferred to use tracking as a back-up to other strategies of management, particularly supervision by a carer and locked doors. In cases where the carers perceived the risk of harm from getting lost to be low, tracking was used to preserve the independence of the person with dementia. The carers reported that tracking gave them reassurance and also enhanced the sense of independence both for themselves and for the person with dementia. The poor reliability of the device was identified as a substantial limitation.

Conclusion: Larger studies are needed to assess the safety and clinical value of GPS tracking. These should explore the views of people with dementia. Assessment tools are needed to assess suitability. Occupational therapy can play a pivotal role in this process of intervention design, assessment and evaluation.

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Perception and significance of an assistive technology intervention the perspectives of relatives of persons with dementia

Purpose: The aim of this study was to examine relatives’ perception of an assistive technology intervention aimed at persons with dementia (PwDs) and their relatives, and to examine whether, and how, experiences of the intervention process differed between relatives valuing the intervention to be of high, and relatives perceiving it to be of low significance. Method: A total of 47 relatives of PwDs within the Swedish Technology and Dementia project were interviewed telephonically using a modified version of the Patient perspective on Care and Rehabilitation process instrument. A total of 46 participants were divided into two groups depending on whether they valued the intervention to be of great significance (GS group; N = 33) or of some/no significance (SNS group; N = 13). Results: Several aspects of the intervention were perceived as highly important, e.g. being shown consideration and respect, and having somewhere to turn. The results indicate that relatives in the GS group perceived certain aspects of the intervention process as highly fulfilled to a larger extent than did relatives in the SNS group. Conclusions: This study illustrates how process evaluations can be used to increase the understanding and to identify improvement aspects of interventions.

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Hurdles that impede economic evaluations of welfare interventions

Compared with economic evaluations of healthcare interventions, less experience has been gained in the field of economic evaluation of welfare interventions. This review suggests possible approaches to address four previously identified hurdles in economic evaluations of welfare interventions. After literature was searched through MEDLINE and EMBASE, it was found that Health-Related-Quality-of-Life questionnaires related to the condition of the target population are needed, instead of generic instruments. These condition-specific instruments use a multidimensional approach. There are specific instruments needed to take account of influences on informal caregivers. Moreover, it was shown that several aspects, such as crime rates and employment should be considered to estimate the impact on societal costs. Finally, the intervention must be described in detail and well defined to reduce variability. In conclusion, economic evaluations of welfare interventions increase complexity. These must be accounted for to permit valid assessments of the value for money of welfare interventions.

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Nursing support and caregiver strain

Objective. To examine the possible association between satisfaction with nursing support and the risk of caregiver strain in informal carers in four Basic Health Areas in Barcelona from 2001 to 2002. Method. An observational, descriptive, cross-sectional study was performed. Subjects were 65 informal carers of both sexes of individuals aged 65 years or older with chronic or terminal diseases, or dementia. Carer-related variables were: age, gender, family relationship with the patient, degree of burden, risk of abandonment, and satisfaction with nursing support. Patient-related variables were: age, gender, type the disease, and degree of dependency. To evaluate the degree of burden in the informal carer, the Zarit scale was used. Results. The mean age of informal carers was 60 years, and most were women (56; 86%). Informal carers had a mean score of 61.20 points on the Zarit scale (SD = 16.50; 95% confidence interval, 57.11-65.29). There were 42 (65%) informal carers at risk of caregiver strain (65%). No statistically significant differences were found between satisfaction of the informal carer and the risk of caregiver strain. Conclusions. The profile of the informal carer corresponds to women with a high level of satisfaction with nursing support and a high risk of caregiver strain.

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Caring together: the carers strategy for Scotland 2010-2015

The Scottish Government and COSLA are determined to ensure that carers are supported to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside of caring. We are pleased to have worked together with a range of interests, including Health Boards, the national carer organisations and carers in developing this strategy. It will build on the support already in place and take forward the recommendations of the landmark report, Care 21: The Future of Unpaid Care in Scotland. We recognise carers as equal partners in the delivery of care in Scotland and fully acknowledge carers’ expertise, knowledge and the quality of care they give. With appropriate support, especially support delivered early to prevent crisis, caring need not have an adverse impact on carers. Caring Together sets out 10 key actions to improve support to carers over the next five years. The focus is on improved identification of carers, assessment, information and advice, health and wellbeing, carer support, participation and partnership. In support of this agenda, the Scottish Government is pleased to announce an investment of a further £1 million in 2010-11 to voluntary sector organisations to provide more innovative short breaks provision in Scotland. The strategy sits within a wider context and reform agenda, with carers at the heart of this agenda. In order to achieve lasting change both for carers and the people they care for, we need to drive forward a range of policy developments, such as action to tackle health inequalities and household income. We need to do more to shift resources from institutional care to care at home, including support for carers. The Reshaping Care for Older People Strategic Delivery Plan, which is in preparation, will articulate the extent of the shift in resources within the system.

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Messages for integration from working with carers

Purpose – The purpose of this paper is to explore the role of carers as coordinators of care in their own right. It outlines how statutory and voluntary agencies can work together to support carers in this role, yet also help them work towards personal outcomes to sustain their own quality of life. It also proposes that approaches to working with carers can reveal lessons for integration.

Design/methodology/approach – The research analysed data from focus groups and document analysis to examine how carers and professionals experienced two different approaches to engaging with carers: the Midlothian carer ' s assessment and VOCAL ' s outcomes focused approach. From this, several themes emerged which are relevant to the current debate on integration.

Findings – Carers were found to be key co-ordinators of care who play a role in the integration of services. Approaches to working with carers can better enable personal outcomes, and integrate carers as equal partners. In addition, improved integration between services can also improve outcomes for carers.

Research limitations/implications – Approaches to working with carers should be carer and outcome focused, and partnership working can mean that carers feel more empowered and included. This helps to achieve personal outcomes, as well as enhance integrated working between other services. However, differentiation between services might, in places, contribute to better outcomes for people.

Originality/value – This paper shifts the focus of integration to look the role of carers as equal partners, and also illustrates how statutory and voluntary services can work better together, while preserving their distinct identities.

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Making it clear and relevant: patients and carers add value to studies through research document reviews

Purpose – The National Institute of Health Research MHRN established the Feasibility and Support to Timely recruitment for Research (FAST-R) service in 2011, to provide rapid patient and carer feedback on research documents, prior to ethical review. The aims were to improve the feasibility of studies, to speed up regulatory processes and enhance study set up and completion. The purpose of this paper is to explore whether and how the FAST-R service benefits the review process.

Design/methodology/approach – An independent evaluator analysed the comments made by FAST-R members on 85 studies over the past 3.5 years. The evaluation team reflected on the nature of these comments and the implications for future practice.

Findings – The FAST-R members’ comments fell into seven categories relating to: the quality of the information, the informed consent process, care and protection of participants, practical arrangements for participants, data protection and confidentiality, recruitment and research design. Based on the evaluation team’s experience of research document review, some of these comments were similar to those made by ethics committees. In other cases, the FAST-R Panel provided a different kind of input by identifying concerns specific to service users and carers.

Practical implications – Patient/carer involvement in reviewing research documents brings added benefits to existing processes because their views are informed by their knowledge and experience. They are able to question assumptions and highlight concerns that people lacking their perspective might otherwise miss. These findings suggest that patient/carer involvement should form an integral part of ethical review, and that the FAST-R model might be usefully applied to other areas of health and social care research.

Originality/value – This original work adds value to the practice of patient and public involvement in research.

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Personalised health and care 2020: using data and technology to transform outcomes for patients and citizens: a framework for action

A framework developed aimed to support staff, patients and citizens to make better use of data and technology and use it to transform outcomes for patients and carers. The framework considers what progress the health and care system has already made and what can be learnt from other industries and the wider economy. The proposals aim to help citizens, care professionals an carers to access to data, information and knowledge they need to make the right health and care choices; make the quality of care transparent; support care professionals to make the best use of technology; support innovation; and assure best value for taxpayers. It draws on evidence from a range of sources, including voluntary organsiations, patient organisations, and directly from service users.

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Self-help groups as mutual support: what do carers value?

The literature suggests that the United Kingdom, in common with Europe, North America, Canada and Scandinavia, has seen significant growth in single-issue self-help/mutual aid groups concerned with health and social care issues since the 1970s, but there is only ad hoc academic and policy interest in such groups in the United Kingdom. This article presents findings from a doctoral study with two self-help/mutual aid groups for carers in South-East England. The data are drawn from semistructured interviews with 15 active members which explored reasons for joining, benefits derived from membership, and perceived differences between support gained by membership and their relationship with professionals. Most group members had prior experience of voluntary work/activity, which influenced their decision to join, often prompted by a failure of the ‘usual’ support network of family/friends to cope or adjust to the carer's needs. Members reported personal gains of empathy, emotional information, experiential knowledge and practical information, based on a core value of reciprocity through peer support. It is this latter benefit that sets apart membership of self-help groups from groups supported by professionals who may not appreciate the scope and breadth of carers’ responsibilities, or of the importance of their relationship with the person for whom they care. In this way, self-help groups offered additional, but not alternative, ‘space’ that enabled members to transcend their traditional role as a ‘carer’. It is concluded that self-help/mutual aid groups, based on reciprocal peer support, offer a valuable type of resource in the community that is not replicable in professional–client relations. The findings have contemporary relevance given the raft of new policies which value the experiential knowledge built by both individual and collectives of carers.

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Poetry, philosophy and dementia

Purpose – The purpose of this paper is to describe the use of poetry by family carers as a way into the inner world of a person with late stage dementia, consistent with their values, preferences and experiences; enhancing the wellbeing of both the person with dementia and family carers.

Design/methodology/approach – The use of poetry is being increasingly recognised as valuable in improving wellbeing for people with dementia. Poetry has an intrinsic quality which is well-suited for people with dementia: it does not require following a storyline and therefore can be enjoyed by those with no short-term memory.

Findings – The paper describes the benefits to both family members and the person with dementia; the use of poetry opened up expression of deep emotions, improved communication and enriched family relationships.

Research limitations/implications – Use of poetry by family carers with people with late stage dementia is under researched in the UK and further study of the impact of this intervention would be beneficial.

Practical implications – Poetry can be used practically in both small groups in care homes or community settings and also one to one by family carers. Of especial value are poems that have been learnt by heart when young.

Originality/value – Finally, the paper also draws attention to the positive lessons we can learn from people with dementia.

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myShoes - the future of experiential dementia training?

Purpose – The purpose of this paper is to discuss the use of virtual reality (VR) for experiential learning in dementia training. People have different perceptions and understanding of what it is like to live with dementia, particularly those that are new to dementia care, whether in a professional capacity, or as a friend or family member. Arguably the most powerful way in which to enhance understanding is to give people a glimpse of what living with dementia might be like.

Design/methodology/approach – The myShoes project aimed to create a resource that would augment a virtual environment and expose the user to an experience that gives them a sense of what living with dementia might be like. The resource was created using the latest VR and game development software. A sample group of students from a mixed range of health professions tested the resource providing in depth feedback on its immediate impact and ideas for further development.

Findings – Notwithstanding the limited sample on which the simulation has been tested, carefully designing the activities and constructing a learning space that allows for reflection on being placed temporarily in another person’s shoes, appears to have enabled students to think beyond ‘treatment, to considering how the person might feel and altering their approach accordingly.

Research limitations/implications – This is a pilot study. More research using VR as a training resource is planned.

Practical implications – The study will support educational training, particularly that which uses virtual reality for clinicians and carers.

Social implications – The adoption of a VR approach to training formal and informal carers has potential to enhance empathy and improve holistic care of people with dementia.

Originality/value – The myShoes project adopts a novel approach to simulating the effects of dementia for training purposes.

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Outcomes of social care for adults: developing a preference-weighted measure

The aim of this study was to develop a measure of social care outcome, an equivalent to the quality-adjusted life year (QALY) in health, which could be used in a range of circumstances.

The project drew on previous and parallel work developing the Adult Social Care Outcome Toolkit and the national Adult Social Care Survey. We developed and tested an instrument designed to reflect service users' social care-related quality of life (SCRQoL) and tested it with 30 service users from a variety of user groups and 300 older home care service users. In parallel, we explored discrete choice experiment (DCE) and best-worst scaling (BWS) approaches to preference elicitation with 300 members of the general population, and cognitively tested these with service users. We also cognitively tested a computer-aided time trade-off (TTO) exercise using SCRQoL attributes with members of the general population. In the second phase, using the finalised instruments, BWS interviews were conducted with 500 members of the general population, TTO interviews with a follow-up sample of 126 of these respondents, and BWS interviews with 458 people using equipment services.

The final measure had eight domains: personal cleanliness and comfort, accommodation cleanliness and comfort, food and drink, safety, social participation and involvement, occupation, control over daily life and dignity. In addition to measuring current SCRQoL, the instrument includes questions used to establish service users' views of their 'expected' SCRQoL in the absence of services. The difference between a person's current and 'expected' SCRQoL provides an indicator of service impact.

There was good evidence for the validity of the descriptive system and the validity of the current, expected and SCRQoL gain scales. The DCE and BWS approaches yielded similar results and, once introductions made clear, were understood by service users. BWS was used for the main stages, as it had technical and cognitive advantages. The computer-aided approach to TTO worked well, and respondents found questions acceptable and understandable. There were no substantive differences in the preferences of service users and the general population. The key domain was control over daily life, with the lowest and highest levels strongly estimated in all models. After allowing for observable heterogeneity, service users' preferences appeared to be more closely associated with their own SCRQoL than with those of the general population. The consistency of the results with the results of a previous study allowed the final model to be based on the preferences of 1000 members of the general population. A formula based on the relationship between TTO and BWS values was estimated for a social care QALY, with '0' equivalent to 'being dead' and '1' being the 'ideal' SCRQoL state. Members of the population experienced significantly higher SCRQoL than service users.

Although further work is needed, particularly to develop an equivalent measure for informal carers and to explore the links with health QALYs, the measure has considerable potential. A number of methodological advances were achieved, including the first application of TTO in a social care context and use of BWS to establish service user preferences.

The National Institute for Health Research Health Technology Assessment programme.

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Efficacy and experiences of telephone counselling for informal carers of people with dementia

Background: Informal carers of people with dementia can suffer from depressive symptoms, emotional distress and other physiological, social and financial consequences.

Objectives: This review focuses on three main objectives: To: 1) produce a quantitative review of the efficacy of telephone counselling for informal carers of people with dementia; 2) synthesize qualitative studies to explore carers’ experiences of receiving telephone counselling and counsellors’ experiences of conducting telephone counselling; and 3) integrate 1) and 2) to identify aspects of the intervention that are valued and work well, and those interventional components that should be improved or redesigned.

Search methods: The Cochrane Dementia and Cognitive Improvement Group's Specialized Register, The Cochrane Library, MEDLINE, MEDLINE in Process, EMBASE, CINAHL, PSYNDEX, PsycINFO, Web of Science, DIMDI databases, Springer database, Science direct and trial registers were searched on 3 May 2011 and updated on 25 February 2013. A Forward Citation search was conducted for included studies in Web of Science and Google Scholar. We used the Related Articles service of PubMed for included studies, contacted experts and hand-searched abstracts of five congresses.

Selection criteria: Randomised controlled trials (RCTs) or cross-over trials that compared telephone counselling for informal carers of people with dementia against no treatment, usual care or friendly calls for chatting were included evaluation of efficacy. Qualitative studies with qualitative methods of data collection and analysis were also included to address experiences with telephone counselling.

Data collection and analysis: Two authors independently screened articles for inclusion criteria, extracted data and assessed the quantitative trials with the Cochrane 'Risk of bias' tool and the qualitative studies with the Critical Appraisal Skills Program (CASP) tool. The authors conducted meta-analyses, but reported some results in narrative form due to clinical heterogeneity. The authors synthesised the qualitative data and integrated quantitative RCT data with the qualitative data.

Main results: Nine RCTs and two qualitative studies were included. Six studies investigated telephone counselling without additional intervention, one study combined telephone counselling with video sessions, and two studies combined it with video sessions and a workbook. All quantitative studies had a high risk of bias in terms of blinding of participants and outcome assessment. Most studies provided no information about random sequence generation and allocation concealment. The quality of the qualitative studies ('thin descriptions') was assessed as moderate. Meta-analyses indicated a reduction of depressive symptoms for telephone counselling without additional intervention (three trials, 163 participants: standardised mean different (SMD) 0.32, 95% confidence interval (CI) 0.01 to 0.63, P value 0.04; moderate quality evidence). The estimated effects on other outcomes (burden, distress, anxiety, quality of life, self-efficacy, satisfaction and social support) were uncertain and differences could not be excluded (burden: four trials, 165 participants: SMD 0.45, 95% CI -0.01 to 0.90, P value 0.05; moderate quality evidence; support: two trials, 67 participants: SMD 0.25, 95% CI -0.24 to 0.73, P value 0.32; low quality evidence). None of the quantitative studies included reported adverse effects or harm due to telephone counselling. Three analytical themes (barriers and facilitators for successful implementation of telephone counselling, counsellor's emotional attitude and content of telephone counselling) and 16 descriptive themes that present the carers’ needs for telephone counselling were identified in the thematic synthesis. Integration of quantitative and qualitative data shows potential for improvement. For example, no RCT reported that the counsellor provided 24-hour availability or that there was debriefing of the counsellor. Also, the qualitative studies covered a limited range of ways of performing telephone counselling.

Authors' conclusions: There is evidence that telephone counselling can reduce depressive symptoms for carers of people with dementia and that telephone counselling meets important needs of the carer. This result needs to be confirmed in future studies that evaluate efficacy through robust RCTs and the experience aspect through qualitative studies with rich data.

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The Government response to the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England

1. This document is a summary of the responses received during the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England. It highlights the key themes and common issues from the consultation responses and sets out the Government’s response that has shaped the statutory guidance. 2 Autism is a lifelong condition that influences how people interpret the world and interact with others. It is estimated that more than 500,000 people in England are on the autism spectrum, which includes people with high functioning autism and Asperger Syndrome. Autism is something that people and their families live with permanently so gaining the right support at the right time can make a significant difference to people’s lives. 3. The statutory guidance updates the original guidance, taking into account progress made since 2010 and changes in line with recent legislation such as the Care Act 2014 and the Children and Families Act 2014

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Exploring coping strategies of carers looking after people with intellectual disabilities and dementia

Purpose – Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia.

Design/methodology/approach – Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis.

Findings – Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer.

Originality/value – Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers.

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Caring for the carers

Estimates suggest there are 5.7 million carers in the UK, carrying out unpaid work valued at a massive 34 billion. The role is undefined and rarely chosen voluntarily. The carers and Disabled Children Act, which came into force in April 2001, gives carer the right to an assessment and local authorities the power to make payments and provide services direct to carers. The carers' Resource is an independent charitable company offering a direct point of contact for carers and professionals seeking information, advice, support, referral, representation and advocacy. 2 refs. [Summary]

Assessing the outcomes of equipment and adaptations: issues and approaches

Current government policy emphasises professional accountability, Best Value, evidence-based practice and outcomes for users and carers. In this context, being able to demonstrate the effectiveness of routine practice is increasingly important. This article considers the key issues in collecting information about the outcomes of equipment and adaptations. These include: the assessment of the full range of outcomes; the timing of data collection; the use of standardised and individualised measures; and linking outcomes to interventions. Three approaches to evaluating the outcomes of equipment and adaptations are distinguished: functional status measures; health status or quality of life measures; and indirect approaches. Examples of each approach are provided and their strengths and limitations discussed. Previous work on the outcomes of equipment and adaptations has neglected the perspectives of carers and the impact of service delivery (service process outcomes); further work on these areas is needed to ensure that all the outcomes of equipment and adaptations are fully evaluated.

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The quality standards for health and social care: supporting good governance and best practice in the HPSS

This document sets out the quality standards that the Department considers people should expect from Health and Personal Social Services (HPSS) in Northern Ireland. The standards have been developed around the five themes of: Corporate Leadership and Accountability of Organisations; Safe and Effective Care; Accessible, Flexible and Responsive Services; Promoting, Protecting and Improving Health and Social Well-being; and Effective Communication and Information. After discussing the values and principles underpinning the standards and the format of the standards, each of the five themes are discussed in more detail. It is intended that the Regulation and Quality Improvement Authority (RQIA), in conjunction with the HPSS, service users and carers, will agree how the standards will be interpreted to assess service quality. The standards will be regularly reviewed and updated. 

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Enhancing partnerships with relatives in care settings

Aim The aims of this project were to implement guidance that sought to involve carers of older people in decision-making processes, and to promote practice development through work-based learning.

Method Data were collected and analysed to examine how carer involvement was being managed on the wards. The data were then fed back to staff in each area and meetings were held to discuss which aspects of carer involvement were priorities for them. These were then matched with the four markers of satisfactory involvement identified in a previous study (Walker et al 1999).

Results Several strategies were implemented to enhance carer involvement, including life story work, written communication books and a newsletter. Early feedback from the project highlighted benefits for staff and relatives, which included greater confidence in negotiating care and closer relationships between relatives and staff.

Conclusion If carer involvement in care is to become a reality, staff need support and encouragement to develop meaningful relationships with relatives and to value their expert opinions.

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Carers and co-production: enabling expertise through experience?

Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

Design/methodology/approach – The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.

Findings – Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.

Research limitations/implications – Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.

Practical implications – Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.

Social implications – The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.

Originality/value – This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.

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Across the divide

This article focuses on the urgent need to develop social work practice, specifically to systemise the learning which is available from professional interventions with service users and carers. It outlines the value of the task-centred model and method as described in 'The Task-Centred Book' which articulates the experiences of practitioners and service users in a systematic way.

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The impact of informal care for patients with Pompe disease: An application of the CarerQol instrument

BACKGROUND: Patients with Pompe disease, a rare progressive neuromuscular disorder, receive a considerable amount of informal care. In this study, we examined the impact of providing informal care to patients with Pompe disease.

METHODS: Caregivers were administered various instruments, which measured the (impact of) informal care in the context of Pompe disease. Patients' quality of life and use of a wheelchair and respiratory support were used to investigate the impact of disease severity on the burden and well-being of caregivers.

RESULTS: Of all Dutch patients with Pompe disease, 88 indicated to receive informal care, of which 67 (76%; 67 caregivers) participated in this study. On average, caregivers provided 17.7 hours of informal care per week. Higher disease burden was associated with more hours of informal care. Caregivers experienced burden due to caregiving. Half of the informal caregivers reported mental health problems and problems with daily activities due to providing informal care. Physical health problems occurred in 40% of informal caregivers. Caregiver burden was higher for patients with a lower quality of life and for wheelchair dependent patients. Burden was not associated with respiratory support. Caregivers reported deriving personal fulfillment from caregiving and, on average, would become unhappier if someone else were to take over their care activities.

CONCLUSIONS: The provision of informal care causes burden to caregivers. However, caregivers also value caring for their loved ones themselves. The study may help physicians and policy makers to design measures to support informal caregivers.

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"Value for money" in treating Alzheimer's disease with the new cholinesterase inhibitors

The absolute number of dementia cases is likely to increase due to the impending demographic changes. Several cost-of-illness studies of Alzheimer's disease, mainly from a societal perspective in developed countries, have demonstrated a huge economic burden. A substantial component of this huge economic burden is the direct costs of institutionalization and the indirect cost incurred by informal carers. This huge economic burden is of great interest because of the emergence of several cholinesterase inhibitors with proven efficacy in the treatment of Alzheimer's disease. Several cost-effectiveness studies of these drugs, based mainly on Markov modelling techniques and using data from population-based epidemiological studies and efficacy trials, have indicated that these drugs are cost-effective. A theoretical delay in placement into a residential or a nursing home and consequent cost savings may explain this cost-effectiveness. In the UK, although health authorities would fund the prescription of these drugs, social services would benefit from the cost savings; thus there is little financial incentive for health authorities to fund these drugs.

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Statistics release: home care services; Scotland 2005

The purpose of this Statistics Release is to present the latest national figures for home care services provided or purchased by local authorities in Scotland. All local authorities in Scotland provide Home Care services which give people the support, practical help and personal care that they need to live as independently as possible in the community.

Original documentation on the Scottish Government website.

A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.

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Factors influencing the use and provision of respite care services for older families of people with a severe mental illness

Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.

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Social work education and mental health in a changing world

This paper addresses a number of issues concerning the future prospects for social work and mental health in England and the implications of these for social work education. In particular the significance of interprofessional practice and education will be examined and these will be located within the wider context of the social work contribution to mental health services. The experience of social work in promoting the interests and involvement of service users and carers and of working within a holistic model will also be recognised. The particular value of the social work contribution to mental health in both mental health and non-mental health settings is emphasised and attention is paid to how this could be strengthened and extended in the light of the opportunities for positive and creative developments offered by the introduction of the new 3-year degree. These will include the development of shared learning with other professional groups and the need to prepare social work students for practice within a rapidly changing world.

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The needs of informal carers: a proposed assessment tool for use by public health nurses

AIM: To develop an assessment tool for the collection of information on carers' needs and to pilot test same. BACKGROUND: No formal assessment of the needs of carers is undertaken by Public Health Nurses (PHNs) in the West of Ireland. METHOD: An assessment tool which took the form of a questionnaire was designed based on an earlier needs analysis, a literature review and qualitative data obtained with carers at two focus groups. Sixty carers were involved in the pilot study of the tool. FINDINGS: Carers found this model made them feel valued, created awareness about the effects of caring and provided them with information. They recommended its introduction. CONCLUSION: The carers and PHNs found the assessment tool to be useful and comprehensive in its approach. However, it requires modification, with specific attention being paid to the validity and reliability of the tool. 

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An outcomes focus in carer assessment and review: value and challenge

A focus on outcomes and a desire to improve assessment and support to carers are central to government policy, crystallized in the 2000 Carers and Disabled Children Act. This paper explores the benefits and challenges of implementing an outcomes approach to carer assessment and review, highlighted by a research and development project, undertaken in partnership with one local authority. The project developed and tested research‐based practice tools which aimed to promote carer‐centred practice, together with clarity in communication and recording of outcomes intended and achieved. Findings indicated that practice could be enhanced with the help of a clear conceptual framework and tools, flexibly and sensitively used to assist discussion and decision‐making with carers about outcomes. Information about outcomes, aggregated from individual records, was perceived as potentially useful for informing service development. Some significant obstacles and challenges also emerged; not least, the subtle but significant culture shift required, and the additional time needed to effectively identify and address outcomes with carers. A number of factors were highlighted as important in introducing such an approach: collaboration with, and between, all stakeholders; training and support for practitioners to include practice in recording outcomes, and opportunities for continuing discussion and reflection during implementation.

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Information pathways into dementia care services: family carers have their say

This research described family carers' experiences in accessing dementia information and services in Southern Tasmania, Australia. Focus groups were conducted around three topics: (i) information available to family carers prior to a formal diagnosis of dementia, (ii) sources of information following diagnosis, and (iii) means of transfer of information. Data analysis identified themes reflecting participants' progressive care experiences: from hurtful and dismissive attitudes towards initial requests for information and early diagnosis, to futile searching for information within a seemingly disorganized healthcare system, to eventual resolution of a kind whereby dementia services were finally procured for family members to varying degrees — all of which created emotional turmoil and delayed receipt of services. This study strongly emphasises the value of health professionals seriously and empathically hearing and acting upon family carers' requests for information and prompt diagnosis of dementia. In addition, there is a significant need to improve access and organization of information and services for people with dementia and their family carers.

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Supporting carers during assessment and treatment unit admissions

Purpose – Currently there is no research that explores professionals’ perspectives in supporting carers of a person with an intellectual disability during their relatives admission to a specialist in-patient setting. The purpose of this paper is to report the findings from the second stage of a study that explored the experiences of family carers whose relative was admitted to a specialist National Health Service assessment and treatment unit (ATU) in Wales, UK (James, 2016).

Design/methodology/approach – Aim: to obtain the views of professionals in relation to what they consider are the barriers and facilitators to addressing some of the experiences discussed by carers. Methods: nine professionals working in intellectual disability-specific services participated in four semi-structured interviews and one focus group (n=5) and the data were analysed using a descriptive thematic analysis process.

Findings – Three major themes were developed to represent what professionals identified as a number of individual, organisational and practical facilitators and barriers to the provision of support to carers at this time. Professionals recognised the important role they have in developing relationships with carers during the admission. Key to this relationship is effective communication, collaboration, involvement and the need to be consistently open and honest.

Research limitations/implications – The small sample size could be said to be a weakness and unrepresentative and practice of other professionals. However, what professionals reported had similarities to the findings from other related research. Importantly, the findings have a practical significance in that they can be used to raise awareness and be used to inform the development of future research and practice. The sample could also be criticised for not having representation from a wider range of professionals from across the multi-disciplinary team. However, a strength of the sample is that it did have representation from three different professional disciplines with different roles and responsibilities.

Practical implications – Currently there is very limited research exploring the experiences of professionals in respect of supporting carers during the admission of a relative to a specialist in-patient setting. Professionals demonstrated an understanding of the impact that the additional needs and admission of their relative to an ATU could have on carers. Accordingly, they were able to recognise the important role that they, and other professionals, play in developing relationships as part of providing support to them during this time. Key to these relationships was effective communication and in particular the need to be consistently open and honest.

Social implications – The findings from this study illustrate a gap between the rhetoric of policy, legislation and carer strategies, and practice of valuing and respecting the role that carers. Of particular concern is that some of the relationships that carers have had with professionals have threatened rather than positively endorsed and augmented their role and identity. These engagements with professionals therefore have had a profound effect on the way in which they have understood their value as a carer and their own sense of self. Significantly, the actions and behaviours of professionals play a key role in shaping carers views of themselves and their identity.

Originality/value – Currently there is no research that has explored the views of professionals in respect of support and relationships with carers at this time. The synthesis of findings from stage one of this study with professionals’ perspectives of resulted in the identification of similarities and differences in experiences as well as facilitators and barriers to support provision. In so doing, it has given clear application of the studies findings to practice. This study therefore provides an original contribution to the understanding of this area of carer experience, from the perspectives of professionals and adds to the wider literature exploring the family carer experience.

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Ethical dilemmas in community mental health care

Ethical dilemmas in community mental health care is the focus of this article. The dilemmas are derived from a discussion of the results of a qualitative research project that took place in five countries of the European Union. The different stakeholders are confronted with the following dilemmas: community care versus hospital care (clients); a life with care versus a life without care (informal carers); stimulation of the client toward greater responsibility versus protection against such responsibility (professionals); budgetary control versus financial incentives (policy makers), and respect for the client versus particular private needs (neighbourhood residents). These dilemmas are interpreted against the background of a value based ethical model. This model offers an integral approach to the dilemmas and can be used to determine policy. The dilemmas are discussed here as the result of conflicting values-namely autonomy and privacy, support and safety, justice and participation, and trust and solidarity.

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The attitudes of people with Huntington's disease and their carers to research

Purpose: The purpose of this paper is to explore the attitude and understanding of research among people with Huntington's disease (HD) and their carers, as well as their experiences of research participation. Design/methodology/approach: Semi-structured interviews were conducted with 12 participants with HD (ranging from pre-symptomatic to moderately severe HD) and ten carers. Data were analysed using interpretative phenomenological analysis. Findings: The emerging themes indicated that carers played a more active part in the research process while the service users adopted a more passive role. These differences gave rise to differences in their attitudes and perceptions of research. Carers described in detail their information processing and decision-making role when participation was offered and then throughout the subsequent study. They facilitated attendance, provided support, enabled the collection of correct data for the study, as well as ensuring the wellbeing of the service user throughout the research process. Service users, however, focused upon the behavioural and physical changes they experienced during the trial. Nevertheless a great level of enthusiasm for research was reported by both service users and carers. Originality/value: Research on the attitudes and experiences of people with HD and their carers is inadequate. Further research is therefore needed into the carers’ potentially considerable burden and significant role in HD research. This could then conceivably impact on the enhancement of the clinical trial experience and recruitment and retention in studies could be improved.

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What makes Santander a great place to work; Bank delivers wide range of benefits for all

Purpose – The purpose of this paper is to describe the policies and practices that have helped to make Santander UK a great place to work.

Design/methodology/approach – Explains the reasons for the policies, the form they take and the results they have achieved.

Findings – Details specific policies in areas such as work‐life balance, caring for carers, diversity, employee development, employee health, employees with school‐age children, employee engagement and community involvement. 

Practical implications – Advances the view that a major factor in engagement is in employees feeling that the company, and particularly senior leaders, genuinely cares about their well‐being. That is the culture the bank strives for. Social implications – Reveals that the bank matches the money raised by employees in their fund‐raising activities in the community.

Originality/value – Discusses the wide range of benefits available to employees at Santander UK and assesses the impact on individuals and the organization as a whole.

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The needs of carers who push wheelchairs

Purpose – The purpose of this paper is to establish the outcome of wheelchair prescription procedures for carers supporting a wheelchair user with special reference to their health and well‐being.

Design/methodology/approach – A postal questionnaire was used in conjunction with analysis of policy and practice documents in wheelchair prescription and carers' needs.

Findings – The majority of carers reported a wide range of health problems. A relationship between wheel chair type and reported carer pain was noted. Only a minority of carers considered that they had received an adequate carer's assessment, and few had received training in wheel chair management; such training where it had been carried out, led to reduced reports of pain.

Research limitations/implications – The study invites more detailed analysis of both the conditions under which wheelchair prescribing takes place and the impact of assessment and training on carers' health. The study is based on a relatively small, local sample and a more extensive study is called for.

Practical implications – Procedures for prescription of wheelchairs should be reviewed and steps taken to ensure that adequate consideration is given to the health needs of carers and the circumstances under which they will push the wheelchair.

Social implications – More thoughtful prescription of wheelchairs will lead to increased health of carers improving their quality of life and reduce demands on health services and the accompanying risk to their capacity to carry on caring.

Originality/value – The study addresses a neglected topic, which clearly identifies the consequences of inadequate prescription of wheelchairs for the health of carers, a topic generally neglected in the literature.

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The provision of emotional labour by health care assistants caring for dying cancer patients in the community: A qualitative study into the experiences of health care assistants and bereaved family carers

Background: While previous research has suggested that health care assistants supporting palliative care work in the community regard the provision of emotional labour as a key aspect of their role, little research has explored the experiences of family carers who are the recipients of such support.

Objective: To explore the emotional labour undertaken by health care assistants working in community palliative care from the perspectives of both health care assistants and bereaved family carers.

Design: We conducted a qualitative interview study in 2011–2012 with bereaved family carers of cancer patients who had received the services of health care assistants in the community, and health care assistants who provided community palliative care services. Transcripts were coded and analysed for emergent themes using a constant comparative technique.

Settings: Three different research sites in the United Kingdom, all providing community palliative care.

Participants and methods: Semi-structured interviews were conducted with 33 bereaved family carers and eight health care assistants.

Results: Health care assistants view one of their key roles as providing emotional support to patients and their family carers, and family carers recognise and value this emotional support. Emotional support by health care assistants was demonstrated in three main ways: the relationships which health care assistants developed and maintained on the professional–personal boundary; the ability of health care assistants to negotiate clinical/domestic boundaries in the home; the ways in which health care assistants and family carers worked together to enable the patient to die at home.

Conclusion: Through their emotional labour, health care assistants perform an important role in community palliative care which is greatly valued by family carers. While recent reports have highlighted potential dangers in the ambiguity of their role, any attempts to clarify the ‘boundaries’ of the health care assistant role should acknowledge the advantages health care assistants can bring in bridging potential gaps between healthcare professionals and family carers.

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Health-related quality of life and attitudes to long-term care among carers of older people using social services

Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.

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Communication outcome after stroke: a new measure of the carer's perspective

Objective: To validate a measure of the carer’s perspective of a stroke survivor’s communication in everyday life.

Design: Cross-sectional, interview-based, psychometric study.  Setting: A community sample from the northwest of England, UK.  Subjects: Fifty-eight carers and 58 stroke survivors with communication problems (aphasia and/or dysarthria) following a stroke within the previous 4—12 months.

Interventions: Administration of the 20-item Carer Communication Outcome after Stroke (Carer COAST) scale, on two occasions, within a two-week period; the 15-item Carers of Older People in Europe (COPE) Index, the patient Communication Outcome after Stroke (COAST) Scale, and collection of demographic and other data relating to the stroke survivor’s disability (Barthel Index), degree of aphasia (Frenchay Aphasia Screening Test) and hospital diagnosis of aphasia/dysarthria.

Main measures: Acceptability (missing values), reliability (internal consistency and test—retest reliability) and construct validity.

Results: Carer COAST showed good acceptability (no incomplete items, sample spread 24—100%), internal consistency and test—retest reliability for the scale (a = 0.94; intraclass correlation (ICC) = 0.91) and its subscales (a = 0.78—0.90; ICC = 0.75—0.87), and indicative evidence on construct validity (Carer COAST, COPE subscales and COAST). There were statistically significant correlations between the communication items of Carer COAST and the negative impact of caregiving (rs = —0.29) and the financial difficulties of caregiving (rs = —0.38).

Conclusions: The Carer COAST scale has considerable potential as a reliable and valid measure of the carer’s perspective on the communication effectiveness of stroke survivors. Intercorrelations with COPE provide specific evidence of the impact of caring for a person with communication difficulties following a stroke.

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Carers' and users' expectations of services - carer version (CUES-C): a new instrument to support the assessment of carers of people with a severe mental illness

Background : Carers of people with a severe mental illness often experience health and social problems themselves. In the UK, carers now have a statutory right to an assessment of their needs. Aim : to develop a brief instrument to identify and measure the experience of those caring for people with a severe mental illness across the range of domains that the carers themselves consider important. Method : potential domains were identified from published and 'grey' literature and refined through consultation with carers. Pilots and field trials of the resulting draft instrument involved a total of 412 carers. Results : a self-rated, 13-item questionnaire. Principal components analysis yielded factors relating to impact of caring and the quality of support provided for carers. Test-retest reliabilities for all items were moderately good or better. The great majority of 75 carers, who gave structured feedback, found they could follow the instructions for the instrument and 90% thought the length was 'about right'. Conclusions : CUES-C could be used as part of the carers' assessment. The instrument does cover the domains that carers value, is acceptable to carers and has reasonable test-retest reliability.

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Implementing and evaluating the first german young-carers project: intentions, pitfalls and the need for piloting complex interventions

The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented.;

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Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers

Introduction Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients’ and caregivers’ efforts to communicate about these issues with their healthcare team.

Methods and analysis This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL—an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients’ and caregivers’ participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators.

Ethics and dissemination Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations.

Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12610000724077.

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Skills social care workers need to support personalisation

Purpose – The purpose of this paper is to consider what implications the government's policy of personalisation has for social care workers in terms of the skills that they need to achieve more personalised support for people using services and family carers.

Design/methodology/approach – A total of 86 semi-structured interviews were undertaken with a purposeful sample of social care commissioners, family carers, representatives of voluntary organisations and carers’ workers based in four contrasting localities in England.

Findings – Participants highlighted the need for social care workers to have more specialist knowledge both about different complex health conditions and about services in their locality. The need to offer tailored support to carers that took account of the time they had been caring and the particular issues that they faced in terms of the health problems that the person for whom they cared was emphasised. The relational aspects of care are important.

Research limitations/implications – This was an exploratory study and may need to be replicated before generalisations could be made.

Originality/value – Existing published research on personalisation rarely discusses its implications for the social care workforce in terms of their skills. There is also still only a limited literature looking at personalisation from the perspective of family carers and those working with family carers

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Young Carers: Children Caring for Family Members Living with an Illness or Disability

Young people often demonstrate considerable commitment, resilience and skill within their roles as young carers. Their contributions, however are regularly devalued or unrecognized by the systems that seek to support them. In this article we examine existing knowledge on why and how young people become young carers and the influences such a role can have on them. We also look at policy and practice issues related to young carers. 

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Attitudes of Family and Professional Care-Givers towards the Use of GPS for Tracking Patients with Dementia: An Exploratory Study

This study examined the attitudes of family and professional care-givers towards the use of advanced electronic tracking such as GPS (Global Positioning Systems) and RFID (Radio Frequency Identification) for elderly people with dementia. The study revealed four principal findings. First, care-givers' views ranged from feeling obligated to use the tracking device for the sake of patients' safety through support of the use of the device for the sake of the care-givers' peace of mind and restricted support, to objection to the use of the device and respect for a person's autonomy. Second, family care-givers showed higher support for the use of GPS and RFID both for their own peace of mind and for the safety of the elder in their care. Professionals attached higher value to respect for a person's autonomy and restricted support for using GPS and RFID. Third, both family and professional care-givers agreed that the decision on tracking dementia patients should be an intra-family issue. Fourth, family care-givers attached more importance to the tracking device's characteristics and design, thus emphasizing that the tracking device must be considered by them as ‘user-friendly’. The implications of the results for social work are also discussed.

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Telesafe 2: a video resource pack on safety: for use with people with learning difficulties and their carers

This is a video that helps with the bogus callers issue. Telesafe 2 is video resource pack on safety produced by The Telesafe Association and Values Into Action. This gave people the opportunity to talk about ID cards, door chains and keeping safe when somebody you don't know knocks at your door. The video also covered harassment on the street and on buses.

Piece of my mind

Commissioning mental health is a complex area and expertise is varied. This article explains 'Values based' commissioning, which aims to put users' views at the heart of reshaping services. Values based commissioning aims to take a fresh look at what kind of services should be commissioned and why, with service users and carers working jointly with commissioners to lead commissioning decisions.

Electronic tracking for people with dementia: an exploratory study of the ethical issues experienced by carers in making decisions about usage

Electronic tracking through GPS (global positioning system) is being used to monitor and locate people with dementia who are vulnerable to becoming lost. Through a review of the literature and an original study, this article examined ethical issues associated with use in a domestic setting. The qualitative study consisted of in-depth interviews with 10 carers who were using electronic tracking. The study explored the values, beliefs and contextual factors that motivated carers to use electronic tracking. It examined the extent of involvement of the person with dementia in decision-making and it explored the various ethical dilemmas encountered by carers when introducing the tracking system. As an issue that emerged from the interviews, specific attention was paid to exploring covert usage. From the study findings, recommendations have been made for research and practice about the use of electronic tracking in dementia care.

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Transitions at the end of life for older adults: patient, carer and professional perspectives : a mixed-methods study

Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.

Setting: England.

Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.

Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.

Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.

Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.

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The COPE index -- a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people

Data was collected in five countries from informal carers of older people ( n = 577) via a common protocol. Carers completed: (1) a 17-item version of the Carers of Older People in Europe (COPE) Index, an assessment of carers' perceptions of their role : (2) a questionnaire on demographic and caregiving circumstances : and (3) three instruments included for the criterion validation of the COPE Index (the General Health Questionnaire, the Hospital Anxiety and Depression Scale, and the World Health Organization Quality of Life-BREF). Principal Component Analysis of the COPE Index was followed by internal consistency analysis of emergent components. Scales derived by summing items loading on the components were analyzed for their association with the criterion measures. Two components, negative impact and positive value, emerged consistently across countries. A third component, quality of support was less consistent across countries. Scales derived from the negative impact and positive value components were internally consistent and significantly associated with the criterion validity measures. These two scales and four items drawn from the quality of support component were retained in the final COPE Index. While further testing is required, the COPE Index has current utility in increasing understanding of the role perceptions of carers of older people.

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The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT)

Background: Relatives of people with psychosis experience high levels of distress. Interventions are needed which can reduce distress and are widely available.

Aims: This study presents the views of relatives on how to design a supported self-management intervention for relatives.

Method: Four focus groups were carried out and relatives were asked for their views on the content, format, support required, likely barriers and potential impact on the outcome of a self-management toolkit.

Results: Relatives were generally very positive about the development of a toolkit. Relatives had clear ideas about the design, emphasising particularly that it needs to be comprehensive, modular, supported and able to translate general information into the specific detail they require for their family member. Many of the ideas informed the development of Relatives Education And Coping Toolkit. Some suggestions, such as multiple modes of delivery, earlier access to the toolkit in primary care and peer support from other relatives, were not possible in this study but should be considered for future development.

Conclusions: Relatives supported the development of a supported self-management toolkit intervention. They also emphasised the importance of offering such interventions alongside other valued aspects of services including face-to-face contact with clinicians, peer support from other relatives and crisis support.

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Involving NHS users and carers in healthcare education

This paper is based on a presentation delivered by the Special Interest Group for Education and Training (SIGET) at the annual Community Practitioners' and Health Visitors' Association (CPHVA) conference. Service user and carer involvement in all aspects of health care delivery, including the educational process, is a key element of the government's modernisation programme. This paper considers the policy context that requires nurse educationalists to seek the views of service users and carers in planning quality healthcare education programmes. It identifies issues and challenges for those working in higher education establishments based on evidence from the literature and the experiences of the authors. Principles of good practice are suggested which value and respect the views of those who are recipients of healthcare delivery.

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Evaluating the effectiveness of service user and carer involvement in post qualifying mental health social work education in Scotland : challenges and opportunities

Purpose – The purpose of this study is to evaluate the effectiveness of user and carer involvement in a new one‐year postgraduate certificate course for Mental Health Officers (MHOs) in Scotland, covering the first year of its delivery (2009‐2010).

Design/methodology/approach – This was explored in two ways: first, by assessing the level of user and carer involvement against a modified framework; and second, by measuring students' confidence in working with people with mental health issues over the duration of the course, and through interviews with students and service users and documentary analysis.

Findings – The findings indicate user and carer “influence” and “partnership” over the design and delivery of the learning, teaching and assessment strategy, but no degree of “control” over any aspect of the course. Teaching provided by users and carers was associated with marked improvement in students' confidence in engaging with and upholding the rights of users and carers in the context of the MHO role. Students reported increased awareness of the lived reality of compulsory treatment. Users reported benefits from feeling they had helped facilitate future good practice.

Research limitations/implications – The research design does not allow for causal links to be made between increases in student confidence and user and carer involvement.

Practical implications – The study identified substantial barriers to effective user and carer involvement but confirmed its potential as a positive change agent for post‐qualifying social work education.

Originality/value – This study contributes to the evidence base by demonstrating the value of service user and carer involvement in post qualifying social work education.

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Nurses' experience of delivering a supportive intervention for family members of patients with lung cancer

Families contribute to maintaining the well-being of people with cancer through providing emotional and practical support, frequently at significant cost to their own well-being, and often with little help from healthcare professionals. This paper describes nurses' experience of providing an innovative service to support the families of people with lung cancer. A process of group reflection by the three nurses involved in delivering the intervention has produced an autoethnographic account of taking part in this study. Three main themes relating to the nature and process of delivering the intervention were identified: ‘meeting diverse need’, ‘differing models of delivery’ and ‘dilemma and emotion’. Supporting family members of patients with lung cancer can be immensely rewarding for nurses and potentially bring significant benefit. However, this kind of work can also be demanding in terms of time and emotional cost. These findings demonstrate the value of incorporating process evaluation in feasibility studies for articulating, refining and developing complex interventions. Determining the applicability and utility of the intervention for other practice settings requires further evaluation.

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Dementia care in England and the social model of disability

This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia – younger people (i.e. those under the age of 65) and those from minority ethnic groups.

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Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer

Introduction: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. Methods: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients’ carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. Results: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. Conclusions: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.

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The Open Doors network: a pioneering scheme

Mike Howorth, Cathy Riley, Gillian Drummond and John Keady introduce a pioneering scheme in which the NHS employs a person with dementia to lead a support and consultative network for people with dementia and carers.

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Comparing carer wellbeing: implications for eating disorders

Purpose – Around 50 per cent of carers of people with eating disorders (EDs) experience mental health difficulties. The purpose of this paper is to investigate well-being of carers of people with ED and carers of people with severe and enduring eating disorders (SEEDs).

Design/methodology/approach – Carers (n=104) were recruited from UK support groups and stratified using duration of the care recipient’s ED (0-2, 2-6, > 6 years), with the > 6 years category classified as SEED. Data were compared with existing carer well-being studies of other patient groups.

Findings – Carers of people with SEED were not significantly different on reported well-being to carers of people with ED. However, carers of people with ED reported significantly less well-being than community norms, carers of people with brain injury and of people with dementia. Specifically, poorer social functioning was reported.

Research limitations/implications – Further research on carers of people with SEED is warranted as carers of people with SEED were not equally balanced in gender. It would be beneficial if support groups and skill-based workshops were more available for carers.

Originality/value – This is the first known study to compare carer well-being of people with SEED with carers of other clinical populations. Further research is required to identify the needs of carers.

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Five sources of hope for the deeply forgetful: dementia in the twenty-first century

At this point of time, two decades after intense biological research into dementia began, we need to reassess our perspective on hope, and understand the need for some redirection toward the larger questions of care when no cure is in sight. It does seem appropriate to focus more of our hope and possibly resources on care itself, and on the creation of attitudinal shifts toward the affirmation of the deeply forgetful. There is no compound available yet that promised to slow or cure dementia. We can have hope in dietary modifications that may delay onset; compassionate carers who manifest our deepest sense of a shared humanity despite cognitive decline; the increasing evidence for enduring selves beneath the chaos of neurological devastation; and the possibilities of a spiritual–cultural evolution toward acceptance, affirmation, and connection with the deeply forgetful. This paper will discuss and critically assess these sources of hope in the world of the deeply forgetful.

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Supporting mental health carers' role in recovery

The project was set up to improve the support offered to carers of people with serious mental health problems through supportive and educational group workshops. It aimed to empower carers by improving their understanding of mental health services and care; and to develop a model of carer and mentoring support. From the 15 carers recruited, five left due to personal circumstances leaving a core group of 10. The group also contained a high proportion of black and minority ethnic carers. Although outcomes showed no significant shifts in thinking or change for carers, the workshops did help carers to develop resilience, working with health professionals, and empowering their advocacy role. Carers also valued the opportunity to listen and learn from each other and peer support developed throughout the programme.

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A weight off my mind: exploring the impact and potential benefits of telecare for unpaid carers in Scotland

A study looking at telecare from a carers' viewpoint is briefly reviewed in this article. The study drew on the experiences of carers through interviews and focus groups. It identified that some stakeholders, notably healthcare professionals, lacked awareness of the value and availability of telecare and that this often resulted in limited referrals and a limited range of telecare equipment accessed by carers. The study concluded that technology will be crucial in addressing the practicalities of delivering care and support to the increasing number of older, sick and disabled people in Scotland who wish to remain in their own homes. Carers in the study described the positive benefits of telecare and most felt that this had increased their own quality of life along with that of the person they cared for. The researchers felt that more needed to be done to raise awareness among carers and professionals about the full range of telecare options.

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Principles of person centred care: part 1

Designed exclusively for those providing care within the care home setting, this two part title introduces carers to the values that underpin person-centred care. It assists them to develop their understanding of how principles of care should be reflected in their day-to-day practices by exploring the values of individuality, rights, choice, privacy, independence, dignity, respect and partnership. It goes on to look at the right service users have to take risks in their lives and how the care plan and risk assessment can assist to protect individuals from harm. It also considers the meaning of equal opportunities and diversity.

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Dementia care costs and outcomes: a systematic review

Objective: We reviewed evidence on the cost-effectiveness of prevention, care and treatment strategies in relation to dementia.

Methods: We performed a systematic review of available literature on economic evaluations of dementia care, searching key databases and websites in medicine, social care and economics. Literature reviews were privileged, and other study designs were included only to fill gaps in the evidence base. Narrative analysis was used to synthesise the results.

Results: We identified 56 literature reviews and 29 single studies offering economic evidence on dementia care. There is more cost-effectiveness evidence on pharmacological therapies than other interventions. Acetylcholinesterase inhibitors for mild-to-moderate disease and memantine for moderate-to-severe disease were found to be cost-effective. Regarding non-pharmacological treatments, cognitive stimulation therapy, tailored activity programme and occupational therapy were found to be more cost-effective than usual care. There was some evidence to suggest that respite care in day settings and psychosocial interventions for carers could be cost-effective. Coordinated care management and personal budgets held by carers have also demonstrated cost-effectiveness in some studies.

Conclusion: Five barriers to achieving better value for money in dementia care were identified: the scarcity and low methodological quality of available studies, the difficulty of generalising from available evidence, the narrowness of cost measures, a reluctance to implement evidence and the poor coordination of health and social care provision and financing. Copyright © 2012 John Wiley & Sons, Ltd.

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Involvement of a Case Manager in Palliative Care Reduces Hospitalisations at the End of Life in Cancer Patients; A Mortality Follow-Back Study in Primary Care

Background: Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse.

Objectives: To compare cancer patients with and without additional support from a case manager on: 1) the patients’ general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes.

Methods: This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013.

Results: The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care.

Conclusions: Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is ‘only’ advisory and he or she does not provide hands-on care or prescribe medication.

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'Confidentiality smokescreens' and carers for people with mental health problems: the perspectives of professionals

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers’ rights, not least to basic information to help them care for service users. ‘Confidentiality smokescreens’ may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.

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Assessing the applicability of GIS in a health and social care setting: planning services for informal carers in East Sussex, England

Informal carers save the state's health and social care services billions of pounds each year. The stresses associated with caring have given rise to a number of short-term care services to provide respite to carers. The Carers (Recognition & Services) Act of 1995 identified formally for the first time, the important role that unpaid carers provide across the community in Britain. The planning of combined health and social care services such as short-term care is a less developed application of geographical information systems (GIS) and this paper examines awareness and application issues associated with the potential use of GIS to manage short-term care service planning for informal carers in East Sussex. The assessment of GIS awareness was carried out by using a semi-structured questionnaire approach and interviewing key local managers and planners across a number of agencies. GIS data was gathered from the agencies and developed within a GIS to build up a set of spatial databases of available services, location of users and additional geo-demographic and topographic information. The output from this system development was presented in turn at workshops with agencies associated with short-term care planning as well as users to help assess their perspectives on the potential use and value of GIS. A renewed emphasis on a planned approach to health care coupled with integrated/joint working with social care creates a need for new approaches to planning. The feedback from planners and users, suggested that a number of key data elements attached to data-sharing may prove to be simultaneously progressive yet problematic, especially in the areas of ethics, confidentiality and informed consent. A critical response to the suitability of GIS as a tool to aid joint health and social care approaches is incorporated within a final summary.

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Support/services and family carers of persons with stroke impairment: perceived importance and services received

Objective: To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important. Design: Data from a cross-sectional study. Subjects: A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project. Methods: Carers were interviewed using a structured questionnaire. Results: There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers. Conclusion: The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers’ perceptions in order to individualize support/service, and thus make it more available and efficient.

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Caring on the breadline: the financial implications of caring: executive summary

This report presents findings of a questionnaire-based survey of the financial position of carers in the UK conducted by the Carers National Association (CNA), the starting point of which was that government carers strategies published recently for England and Scotland have omitted to address carers' financial problems. The survey suggested that a large proportion of carers providing substantial care are faced with financial hardship. The report presents a detailed account of the effects of caring on income and finances, the diversity of needs according to the age, ethnic background, and benefit status of carers, and the changes which carers would perceive to be most beneficial. A concluding chapter sets out the CNA's recommendations for reducing poverty and social exclusion among carers, and promoting paid employment and recognition of the value of the work of carers. An appendix contains the questionnaire. References cited at the end of each chapter.

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Carers' needs when relatives go into a care home

This article reviews literature on the experiences of family carers when a relative goes into long-term care, with the aim of informing nurses on providing support. Experiences before and after the care placement are explored. The study found nurses fail to recognise carers' expert knowledge and skills about their cared for relatives. Families perceive their loved one's values, beliefs and life history are ignored. Nurses need to challenge barriers to communication, and move away from paternalistic and ritualised care practice. 

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Changes in daily occupations and the meaning of work for three women caring for relatives post-stroke

Study aim: This qualitative study explored how some working Austrians experienced and coped with changes in their daily occupations after becoming informal carers of persons who had had a stroke. The study provides insights into the working carers' occupational experiences and strategies during a period of pronounced life changes. Methods: Three participants, who were employed in full- or part-time work, as well as being informal carers of persons who had had a stroke, were interviewed on two occasions. The data from these interviews were analysed using Interpretative Phenomenological Analyses. Results: Carers found themselves in an ongoing process, ranging from the disruption of daily occupations to their eventual restructure. First, the stroke led to involuntary changes in the carers' daily life, which resulted in challenges in their own, and in shared, occupations. Second, carers actively changed their values and performance of occupations, which appeared to be a strategy to shape their well-being. Paid work was found to be a stabilizing and balancing occupation, which contributed to coping and the well-being of carers. Conclusions:The authors' findings demonstrate the benefits of paid work and engagement in meaningful occupation for the carers' well-being. These results should encourage occupational therapists to be sensitive to the complexity of the lives of working informal carers.

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Effectiveness of sensory discrimination training when delivered by family members: a pilot study

The proportion of disabled stroke survivors is increasing. These people may experience loss of sensation that negatively impacts on performance and participation in daily activities. The value of adopting active approaches to rehabilitation is growing; however, high costs and demand over an extended period of time impose limits on therapist-based application. Informal carers and family members are a potential, low-cost resource for expanding the scope of rehabilitation across environments and over extended time periods. We systematically developed and established the effectiveness of an approach to retraining lost sensation and function in the hand that has positive outcomes in relation to the ability to feel everyday textures and objects and use the hand in daily tasks. The purpose of this study was to investigate whether family members, as surrogate therapists, are able to effectively conduct the sensory training program in home environments. Three single-case quasi-experiments were conducted in which stroke survivors' spouses implemented the training program across touch or limb position sensations. We found positive treatment effects in all cases. These findings indicate that selected surrogate therapists (spouses) can successfully implement a program of sensory retraining when provided 2 to 3 hours of training and supervision by a qualified therapist.

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An evaluation of the impact of voluntary sector family support workers on the quality of life of carers of schizophrenia sufferers

An evaluation was conducted of voluntary sector family support workers (FSWs) working with families of schizophrenia sufferers. FSWs completed a diary schedule and interviews were conducted with 15 co-professionals from the FSWs' multi-disciplinary teams and 62 carers from FSWs' caseloads. Carers' problems were assessed using the burden component of the Social and Behavioural Assessment Schedule and the Lancashire Quality of Life Profile. Carers were asked about the type of support received and their satisfaction. The findings revealed the considerable pressures of caring and highlighted the value perceived by both carers and coprofessionals of the FSW as a counselling, listening, information and advocacy resource. The diary study revealed that FSWs spend 40% of their time providing emotional and/or practical support. The impact of this was suggested by the superior ratings of quality of life and lower burden scores among carers with whom the FSW had longer-term involvement.

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Exploring the meaning of recovery for carers: implications for social work practice

This paper describes the impact that learning about recovery has on mental health carers, exploring the implications of this research for UK social work and beyond. A steering group co-produced a training intervention on recovery that was delivered by the first author and a carer, both with experiences of recovery, to eleven carers. Mainly qualitative data, with supplementary socio-demographic data, were collected to evaluate the impact of this training. Thematic analysis was applied to the data. Findings suggest that being more ‘recovery-aware’ gives carers increased hope and optimism for the future. Awareness of the impact of caring upon the service user's life helps carers to promote recovery in their relative, and gain confidence in their own expertise-by-caring. Professional care is fundamental to recovery but needs to build on a partnership model. The carers evaluated the training as helpful, and valued its authenticity in being led by trainers with experience of recovery. Carers' expectations of professional practice are highlighted, with different approaches discussed that support effective carer involvement in their relative's care. Recognition of carers' expertise-by-caring demands a new approach to mental health care, with significant implications for British social work practice.

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Care home design for people with dementia: what do people with dementia and their family carers value?

Objectives: To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers.

Method: Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male).

Results: Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to ‘bricks and mortar versus people’. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision.

Conclusion: The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.

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“Let me back into the world”- compassionate care in practice: a carer and patient’s view

Purpose – “Let me back into the world” was the heart rending response by an older relative to a question about his wellbeing following a difficult period of illness and hospitalisation. As his main carer, the author of the paper was struck, when visiting the hospital, by a small poster, on a notice board near to the entrance to the hospital ward, outlining the staff’s commitment to Compassion in Practice. Compassion in Practice was enshrined in the Compassion in Practice vision and strategy (Department of Health, NHS Commissioning Board, 2012) for building a culture of compassionate care across health and social care. A key element of the strategy was to make the values of care, compassion, courage, communication, competence and commitment, real and visible to patients and the public. The purpose of this paper is to seek to compare the values being stated with the care experience. 

Design/methodology/approach – This paper records a personal perspective from a patient and their family carers of compassionate care in practice. This experience is one case study and does not seek to represent the experience of other patients and their families.

Findings – This highlights the importance of communication and demonstrates that care and compassion are human emotions and values that have to be lived in practice and are part of the interaction between patient, clinician and family. Simply believing in those core nursing values does not make them real for the patient in practice.

Originality/value – Both patient and the family carers had extensive experience of working in health and social care including the NHS. This account demonstrates the challenges of turning strategy into actions that can ultimately improve the patient experience of care.

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Valued aspects of primary palliative care: content analysis of bereaved carers' descriptions

Background: Informal carers provide the bulk of palliative home care. They largely rely on general practitioners (GPs) and district nurses to support them in this role, yet little is known about what carers themselves consider important in this support.

Aim: To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support.

Design Of Study: Retrospective interviews. Setting: Primary care in Cambridgeshire.

Method: Semi-structured interviews with bereaved carers of 48 patients with cancer and 12 patients with non-cancer diagnoses. Content analysis of carers' evaluative descriptions of GP and district nurse support.

Results: The accessibility of the GP and district nurse emerged as the most important aspect of support. Enlistment of help from other agencies was also extensively mentioned, together with provision of equipment. Attitude or approach during interactions, and relationship with the professional were important, particularly regarding GP support, whereas support for the carer, information, and symptom control were mentioned less often. Data suggested that support was not as good for older patients (> or =75 years), but this finding requires further investigation.

Conclusion: Results largely confirmed findings of previous, quantitative research and the importance of a patient-centred approach. What emerged most strongly, however, was the central importance of accessibility of support services for lay carers responsible for end-of-life home care. This mainly concerned GP and district nurse support, but accessibility of additional care and equipment were also important. In short, carers' main focus was the basic support that enabled them to sustain care in the home.

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"Isn't he wonderful?" Exploring the contribution and conceptualisation of older husbands as carers

This paper explores the relationship between the dimensions of a debate cited at the intersection of ageing, gender, and family care. It draws together evidence from the General Household Survey for Britain 2000 and social research to explore the contribution and conceptualization of caring by older husbands. UK research on caring reveals that among older spouses, equal numbers of husbands and wives provide intensive care. It has been argued that within late-life marriage an over-riding desire to retain independence erodes gender-determined task allocation, suggesting not only similarity but equality between wives and husbands as carers. More recent qualitative research challenges this assumption and suggests two key findings: that older husbands are motivated to care by a combination of marital duty and reciprocal love, and that they manage the tasks of caring within an instrumental framework. Further, it is clear that pre-existing gender relations continue to be powerful determinants of the experience of caring, and that marital power is retained by men in late-life marriage. Overall, the caring contribution of older husbands is imbued with positive meaning, is highly valued, and offers a distinctive role and identity; this contrasts sharply with the caring experiences of older wives.

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The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the lite

Background: Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption. Methods: The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children. Results: HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate. Conclusion: The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.

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Caring at a distance: learning and practice issues

Emphasis on support for informal carers focuses on those who provide, in the words of the Carers (Recognition and Services) Act 1995, 'substantial' and 'regular' care. Following research and policy, professional education has also developed interest in those who live with the people they support, such as co-resident spouses and children of all ages. This article considers those who probably do not define themselves as carers and are usually referred to as 'relatives' or 'family', living at a distance from an older relative. It explores their possible need for support as well as the form and level of their involvement in relation to care managed services. It describes key areas or events to draw out practice issues and concludes with a discussion of the extent to which care management can work with such relatives. In many ways caring at a distance forces an examination of what is meant by 'care' and who can legitimately claim this as an emotion or status. The rationale for such interest is therefore three-fold. If social workers and social work educators restrict the meaning and their definitions of carers to those who provide 'hands on' services, as part of the care package, they risk alienating relatives from the learning experience of students. In doing so they may neglect these highly valued supports of older people and may leave relatives distressed and disempowered by anxiety over their contract with social work agencies.

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Up close and personal: a qualitative study exploring the lived experience of older carers

This study explored the experiences of informal carers who were aged 65 years and over. It has been estimated that 15 per cent of those aged 65 or over provide some form of informal care in England. Despite a growing literature on the involvement of older people in research, there is a paucity of literature on the involvement of older carers. In this study, older carers were identified via a General Practice (GP) register in one urban medical practice. Data was collected through a series of focus groups, which were transcribed and analysed using thematic analysis. Every carer aged 55 or over and registered with the medical practice was invited to take part in the study. Four female carers and one male carer took part in the study (age range 65-83). Themes that emerged during data analysis included, 1) managing things in an emergency, 2) feeling valued because they took part in the research and 3) the day-to-day reality of living with social exclusion. GP registers provide a valuable tool for identifying older carers who may otherwise be difficult to engage in research. However, persuading GPs to engage with qualitative research may be a challenge.

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Practical approaches to co-production: building effective partnerships with people using services, carers, families and citizens

Co-production is one of four elements which define successful change. The additional elements are defined as subsidiarity, leadership and system alignment1 . It is clear that engagement of people who use services, carers, families and citizens needs to be a core element of all four change principles for genuine and sustainable change to be achieved. This document provides a brief overview of the different approaches to co-production and acknowledges the individual voices and approaches which exist in the co-production sphere. The content has been co-produced by a range of partners2 who have shared their insights to highlight different aspects of co-production.

The document: • considers the policy context within which approaches to co-production are being developed, in particular, in the NHS White Paper, Equity and Excellence: Liberating the NHS, the proposed Public Health White Paper, A Vision for Adult Social Care: Capable Communities and Active Citizens and the Partnership Agreement between government and the social care sector, Think Local, Act Personal. • explores what we mean by co-production – it looks at definitions of co-production within health and social care and the principles underpinning co-production. • highlights different approaches to involving people, including: - ensuring diverse groups can participate, - collaboration with user-led organisations (ULOs), - engaging carers in co-production, - working with citizens to create Participatory Budgets, - working with small social enterprises, • summarises legal frameworks that support co-production, and • provides examples of where co-production has worked well at different levels of the social care system.

This paper also links closely with accompanying DH briefing papers Practical approaches to improving the lives of disabled and older people through building stronger communities, Practical approaches to safeguarding and personalisation and Practical approaches to market and provider development. 

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Service users’ involvement in the development of a maintenance cognitive stimulation therapy (CST) programme: a comparison of the views of people with dementia, staff and family carers

This study reports on the process of developing a maintenance programme manual following the Medical Research Council guidelines representing the ‘phase I’ or modelling. This study uses an inductive thematic analysis approach to examine user perceptions on the maintenance cognitive stimulation therapy (CST) programme. Three focus groups were carried out with people with dementia, three with staff, and three with family carers of people with dementia. In total 17 people with dementia, 13 staff and 18 family carers took part in separate focus groups. The main findings from the user focus clearly supports the recent draft NICE guidelines on dementia (NICE‐SCIE, 2006) that states that all people with mild/moderate dementia should be ‘given the opportunity to participate in a structured group of cognitive stimulation programme’. People with dementia highly valued the opportunity to take part in a mental stimulating group programme and found it vital in keeping them healthy and active. Most family carers and staff were very positive but expressed concerns about the effectiveness of this type of programme and gave real life examples where the idea of ‘use it or lose it’ did not apply. Results from the focus groups will be used in order to produce a new version of the maintenance CST draft manual and this will be evaluated in a large randomized controlled trial (RCT).

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Caring Situation, Health, Self-efficacy, and Stress in Young Informal Carers of Family and Friends with Mental Illness in Sweden

This study compared the caring situation, health, self-efficacy, and stress of young (16-25) informal carers (YICs) supporting a family member with mental illness with that of YICs supporting a friend. A sample of 225 carers, assigned to a family group (n = 97) or a friend group (n = 128) completed the questionnaire. It was found that the family group experiences a lower level of support and friends experienced a lower positive value of caring. No other differences in health, general self-efficacy and stress were found. YICs endure different social situations, which is why further study of the needs of YICs, especially those supporting friends, is urgently needed.

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Baby-boomers and the ‘denaturalisation’ of care-giving in Quebec

The North American post-war generation, known as the baby-boomers, has challenged traditional family relations and the sexual division of labour. How do these challenges play out in the face of frail, ill or disabled family members? A study undertaken in Montreal, Quebec, with baby-boomer care-givers aimed to raise understanding of the realities of this group. We met with 40 care-givers for a one and a half-hour qualitative interview to discuss their identification with their social generation, their relationship to care-giving, their values regarding care-giving, and the reality of the care-giving they offer. The findings indicate that women, in particular, no longer identify themselves mainly in terms of family. For most, care-giving is not their only or even their dominant identity. They are actively trying to maintain multiple identities: worker, wife, mother, friend and social activist, alongside that of care-giver. They are also participating in the very North American process of individualisation, leading to what we call the ‘denaturalisation’ of care-giving. Notably, the women we met with call themselves ‘care-givers’ and not simply wives, daughters or mothers, denoting that the work of care-giving no longer falls within the realm of ‘normal’ family responsibilities. These care-givers thus set limits to their caring commitments and have high expectations as to services and public support, while still adhering to norms of family responsibility for care-giving.

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Together for mental health: a cross-government strategy for mental health and wellbeing in Wales

This report presents the new mental health strategy for Wales, covering people of all ages. It aims to address the needs of people with mental health problems or a mental illness, whilst also improving mental wellbeing. The strategy is intended to improve outcomes for service users, carers and their families.  It encourages the "recovery and reablement" approach, which aims to help people live independently and achieve their full potential. The strategy builds upon current policy and incorporates the legal requirements of the ‘Mental Health (Wales) Measure’, as follows: chapter 1 states the intent to promote mental wellbeing and, where possible, prevent mental health problems developing; chapter 2 sets out how a new partnership with the public will be established, encouraging an understanding of mental health and mental illness, seeking to eradicate the stigma which can be associated with mental health; chapter 3 emphasises the value of a well-designed, fully integrated network of care; chapter 4 highlights that a range of factors in people’s lives impact on their mental health and wellbeing. Chapter 5 brings Together for Mental Health to a conclusion with an overview of how we make the vision a reality. 

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Future of social media in health and care with co-production

Future of health in EU faces the triple challenges of ageing, fiscal restriction and inclusion. In the UK the number of aged people will increase to 6.6 million in the next 25 years. In Scotland, the group people 74+ are projected to increase most dramatically by 82% by 2035. That statistics show every day the needs of older people are growing and an increasing number of carers are required. Now the number of carers are around 10% of population of the UK. In next 25 years the population of carers will rise to 9 million. The current value of care is worth an estimated £119bn per year - considerably more than total spending on the NHS. Hence government searches for ways to reduce costs while maintaining quality of care. The full participation of informal carers in the co-production of health and care has the potential to play a significant role in the sustainability of health and care delivery. A pressing issue is how to coordinate this massive resource with the formal health and care system to enable true co-production of health and care. Increasingly e-health, is seen as the tool to re-shape healthcare systems. In particular, social media (SM) are seen as critical enabler for co-production.

Our study investigates the current and possible future for SM as an enabler of co-production in health and care. To achieve these aims two main sets of questions are asked: what are the current uses of SM in health and social care? How can SM be reshaped to enable health and care coproduction? We consider a typology of opportunities and limitations of SM for health and care: - Existing health and care service bundles with existing or new SM tools - New health and care service bundles with existing or emerging SM tools

So far we have: a) Characterised current uses of SM and have identified benefits (and risks) of SM for health and care by reviewing the literature; b) Identified coordination tools and social sensemaking as key emerging trends in the use of SM; c) Identified health and care integration as a key driver for service redesign and for the adoption of co-production and have begun to characterise the needs SM can meet in this context. d) And begun preparing to collect data through collaboration with the Living it Up Project (a sub-project of DALLAS study - Delivering Assisted Living Lifestyles at Scale, a £23 million partnership between the Technology Strategy Board and government departments, launched in June 2011) which is a programme aiming to support better health, wellbeing and active lifestyles in Scotland and is exploring new services and modes of cooperation

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Citizenship, migration and the value of care in the European Union

This paper examines the relationship between care and mobility. It does so within the specific context of intra‐EU migration and the development of European citizenship. Citizenship of the Union bestows valuable social rights on mobile community nationals. Entitlement under the provisions is not, however, universal but conditional and privileges those in paid work. The paper considers the implications of this emphasis on paid work in two related respects: firstly, the impact on those people who move as part of the ‘male breadwinning family’ but are not engaged in paid work (the partners and families of workers); and secondly those community citizens whose migration decisions are shaped by the need to provide unpaid care to family members. Drawing on empirical research with migrant families, the paper concludes that the concept of work in Community law places those people who are not engaged in paid work (and family carers in particular) in a highly vulnerable and dependent position. Furthermore, the assumption of fixed and predictable dependency relationships within migrant families that underpins the law (and to some degree migration theory) fails to take account of the fluid and complex nature of dependency and caring relationships over the life‐course.

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Statement on policy and practice for adults with a learning disability

All Wales People First has been actively involved in preparing this Statement on Policy and Practice for Adults with a Learning Disability. This has been a welcome opportunity for people with learning disabilities to get directly involved in policy making. We were able to give our very valuable viewpoint which reflects the desires, hopes, dreams, wants and needs of people with learning disabilities. Our involvement has come about through our membership of the Learning Disability Implementation Advisory Group that was set up by the Welsh Assembly Government following its response to the Fulfilling the Promises report. Many different groups, including parents, carers, and health, social services and education professionals, have been involved in producing this statement. It is a vision for everyone involved with learning disability. The Statement on Policy and Practice will help to make it more possible for people with learning disabilities to become included in community living and have more opportunities to develop our own lifestyles. We want to build bridges between us and the world out there and we see this as a two way process. We want people to understand us better and value us. We can make a valuable contribution to the community and we can help people in the community to recognise us as valued citizens. Making these links, would make the community safer for all

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Ethical Dimensions of Human-Robot Interactions in the Care of Older People: Insights from 21 Focus Groups Convened in the UK, France and the Netherlands

We briefly report the method and four findings of a large-scale qualitative study of potential users' views on the ethical values that should govern the design and programming of social robots for older people. 21 focus groups were convened in the UK, France and the Netherlands. We present and briefly discuss our data on: 1) the contrasting attitudes of older people and formal and informal carers about how well technology might be received by older users; 2) views about healthcare professionals, informal and formal carers having access to private information about householders that has been collected by the robot; 3) the belief that robots could not, as well as should not, replace human contact because persuasion is regarded a uniquely human skill; and 4) differing perceptions of the role of the robot and how this was used to justify ethical opinions on robot behavior.

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Willingness-to-pay for reductions in care need: estimating the value of informal care in Alzheimer's disease

Objective: To estimate the value of informal care in Alzheimer's disease using contingent valuation.

Methods: A questionnaire was administered to 517 primary carers in four countries (UK, Spain, Sweden, and US). Dichotomous choice and bidding game methods were used to elicit their willingness to pay for a reduction in care burden by 1 h per day, or a total elimination of care needs. Further, the relationship between carer willingness to pay and carer and patient characteristics including disease severity and income was examined.

Results: Carers spend on average about 7–9 h per day on giving care to their patient, of which 4–5 h constituted basic and instrumental ADL tasks. For a 1 h reduction in need for care per day, carers in the UK, Spain, Sweden, and US said that they were willing to pay £105, £121, £59, and £144 per month respectively. The willingness to pay was higher for carers with higher disposable income while the influence of other determinants varied across countries. About one-third of carers were not willing to pay anything for a reduction in care.

Conclusions: Carers' stated willingness to pay for reductions in care giving time is substantial and comparable to the prices currently paid for treatments that achieve this benefit. Its determinants seem more directly related to carer status than directly to patient status and may vary by region and by cultural and sociologic factors. Copyright © 2009 John Wiley & Sons, Ltd.

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A study identifying the difficulties healthcare students have in their role as a healthcare student when they are also an informal carer

There is a growing body of literature concerning the needs of informal carers, however, there is little relating to the needs of carers who are also university students. There are a number of publications concerning the difficulties university studies may cause and in particular the stress that some healthcare students endures when they undertake clinical placements. Being an informal carer has the potential to aggravate any difficulties students may have in the normal course of their studies.

The purpose of the study was to explore the experiences and needs of healthcare students who are also informal carers. An electronic survey (February 2010) of 3567 students identified 36 students who are also informal carers. Most were female, pre-registration nursing students, studying full-time and who cared for their physically disabled children, chronically ill parents or terminally ill grandparents. Most respondents spent over 6 h a day on informal caring responsibilities. The majority said informal caring had a negative impact on their studies.

An in-depth interview study was undertaken (April 2010) with ten students. Data themes identified in the analysis were; descriptions of being an informal carer, impact of caring on studying, sources of support and hidden lives. In the theme ‘hidden lives’ students highlighted that they did not want university staff to know that they were informal carers as they did not want ‘special’ treatment. It was theorised that this could be due to the stigmatisation sometimes attached to being a carer. The value of the study was that it was found that more targeted information about student support services is needed, to help students successfully complete their studies. This would be beneficial for universities too as students who leave early without successfully completing their programme have financial implications.

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What do we know about partnership with service users and carers in social work education and how robust is the evidence base?

Partnership work with service users and carers in social work education is a policy requirement, and it is also central to the anti-oppressive and rights-based values of social work. This paper reports research findings which are drawn from an educational context, but are also relevant to the wider field of health and social care. The research team undertook a systematic knowledge review using the Evidence for Policy and Practice Information and Coordinating Centre system, which had been used in health and education, but which had not previously been used in social care and social work. This involved an extensive search of electronic databases and rigorous screening to identify studies which had sufficient relevance to be subjected to detailed analysis. The research team also undertook a practice survey of the teaching, learning and assessment of partnership in prequalifying programmes in England, Wales and Northern Ireland. This involved three stages: a document search; telephone interviews; and focus groups held with students, academic staff, and service users and carers. Throughout the research process, the interdisciplinary team was advised and supported by a stakeholder group which consisted of service users and carers, students, and employer representatives. In the second part of the paper, subsequent discussion explores key findings from the research, including the disputed nature of the concept of partnership, models of partnership work within social work education and the dearth of research on partnership outcomes. Five related questions are identified as a means of interrogating the robustness of the research process and findings. The paper concludes by arguing for work to be done to theorise partnership, and to develop effective strategies for improving the quality of partnership working in education, and health and social care practice.

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Monetising the provision of informal long-term care by elderly people: estimates for European out-of-home caregivers based on the well-being valuation method

Providing informal care can be both a burden and a source of satisfaction. To understand the welfare effect on caregivers, we need an estimate of the ‘shadow value’ of informal care, an imputed value for the non-market activity. We use data from the 2006–2007 Survey of Health Ageing and Retirement in Europe which offers the needed details on 29,471 individuals in Austria, Belgium, the Czech Republic, Denmark, France, Germany, Italy, the Netherlands, Poland, Spain, Sweden and Switzerland. Of these, 9768 are unpaid non-co-resident caregivers. To estimate net costs, we follow the subjective well-being valuation method, modelling respondents' life satisfaction as a product of informal care provision, income and personal characteristics, then expressing the relation between satisfaction and care as a monetary amount. We estimate a positive net effect of providing mode rate amounts of informal care, equivalent to €93 for an hour of care/week provided by a caregiver at the median income. The net effect appears to turn negative for greater high care burdens (over 30 hours/week). Interestingly, the effects of differences in care situation are at least an order of magnitude larger. We find that carers providing personal care are significantly more satisfied than those primarily giving help with housework, a difference equivalent to €811 a year at the median income. The article makes two unique contributions to knowledge. The first is its quantifying a net benefit to moderately time-intensive out-of-home caregivers. The second is its clear demonstration of the importance of heterogeneity of care burden on different subgroups. Care-giving context and specific activities matter greatly, pointing to the need for further work on targeting interventions at those caregivers most in need of them.

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Working together in dementia research: reflections on the EVIDEM programme

Purpose– The purpose of this case study is to report and reflect on a recently completed five-year programme of research on dementia care and practice in England. This EVIDEM programme of research was specifically designed to influence services for people with dementia and their carers; several additional lessons emerged along the way that might shape broader research on ageing that includes older people and those who work with them.

Design/methodology/approach – This case study of the EVIDEM programme presents and discusses four lessons learned by the core research team – covering the implications of newly basing research inside the NHS, multi-disciplinary working across academic disciplines, communicating with diverse practitioners, and the impact of patient and public involvement on the research process. The paper reflects on communication between the NHS and academic communities, and the creation of new research capacity in dementia.

Findings – Collaborative working between academic disciplines is possible, given willing researchers and commitment to participating in frequent opportunities for dialogue and learning. In research in dementia these foundations are probably essential, given the growing scale of the problem and the small size of the research community, if we are to have a beneficial impact on people's lives. Lay expertise is a necessary ingredient of research programmes, not just for its co-design power, but for its ability to redesign projects when major problems arise. 

Research limitations/implications – This case study reports the subjective views of the research collaborators. While this raises the potential for bias, it offers an “insider” perspective of the research process and engagement in research leadership.

Originality/value – There are few reflections on research processes and management and this case study may be useful to academic researchers, to those working in the NHS with responsibility for research in different forms, and to older people's organisations who wish to hear of the value of older people's engagement in research advisory activity.

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We know the price but not the value

Mark Ivory investigates current thinking among policy makers on the economics of providing more support to long-term carers.

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The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

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Monetary Valuation of Informal Care Based on Carers' and Noncarers' Preferences

Objectives: To elicit willingness-to-accept (WTA) values for informal care based on the preferences of informal carers and noncarers.

Methods: Two surveys were conducted with a sample of carers (n = 202) and a sample of noncarers (n = 200). Individuals in both groups were asked three questions in which they had to state the minimum monetary compensation they would require (WTA) if they had to look after a person described in a hypothetical scenario for one extra hour per day. Furthermore, carers were asked for the compensation they would demand if they had to be in charge of their actual care recipient for one extra hour per day.

Results: No significant differences were found between the distributions of carers’ and noncarers’ WTA values. Overall, respondents’ valuations were sensitive to and consistent with their preferences over the tasks to be carried out in the extra hour of informal care. On average, carers required a lower monetary compensation for one extra hour taking care of their loved one (mean/median WTA values €5.2/€4.5) than if they had to devote that time to look after the hypothetical care recipient (mean/median WTA values €6.4/€5.5). More than half of the carers stated the same value under the two caring situations, which suggests that carers’ WTA values were influenced by their own experience providing informal care.

Conclusions: Our results show that it is feasible to derive a monetary valuation for informal care from the preferences of noncarers.

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The relationship between patient characteristics and carer psychological status in home palliative cancer care

Goals: Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.; Patients and Methods: Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures. Multivariate analyses were performed for each dependent carer psychological measure, with patient characteristics as independent variables (adjusted for carer age and gender).; Main Results: Forty-three carers participated. Greater patient distress was associated with carer anxiety (b value: magnitude of the effect) (b=0.31, p=0.07), and both patient psychological status (b=0.37, p=0.02) and pain (b=0.29, p=0.09) were associated with carer psychological morbidity. Carer burden was associated with patient psychological distress (b=0.35, p=0.03) and pain (b=0.29, p=0.08). Carer avoidance/emotion-focused cognitive coping strategies were associated with patient physical function (b=0.34, p=0.04), and cognitive problem-focused coping was associated with patient symptoms (b=0.28, p=0.06) and physical function (b=0.29, p=0.05). Conclusions: Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.

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The human occupational impact of partner and close family caregiving in dementia : a meta–synthesis of the qualitative research, using a bespoke quality appraisal tool

INTRODUCTION: In 2009, the United Kingdom Department of Health identified the need to assist families so that people with dementia can remain living at home. Occupational therapists could support families and their loved ones at home by understanding the human occupational impact of caregiving. This impact includes how one is influenced by values and motivated to perform activities shaped by experiences and life roles. The purpose of this review was to synthesize qualitative research related to family dementia caregiving, extrapolating information about the human occupational impact on the caregiver. The aim was to inform occupational therapy practice. METHOD: A search was conducted across a range of electronic databases. A quality appraisal tool was specifically developed for the study appraisal and data extraction process. Data were extracted and analysed within the Model of Human Occupation framework. FINDINGS: Twenty studies were included in this review. Five themes emerged: adapting to dementia; staying motivated and in control; preserving occupational balance and wellbeing; gaining meaning from the caregiver role; and losses and burden. CONCLUSION: The human occupational impact of caregiving affects the quality and decision-making of care for families. Occupational therapists are well placed to support families through the stages of dementia.

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The interplay between social and cultural context and perceptions of cardiovascular disease

This paper seeks to explore the impact of social and cultural factors upon perceptions of the patients’ cardiovascular risk and intended lifestyle changes. Qualitative and quantitative research approaches were used. The sample was purposeful; matched groups of 10 first time post myocardial infarction (MI) patients, 10 informal (spouse, blood relative or partner) and 10 formal carers (nursing staff) were selected on a convenience basis. Personal interviews were conducted with participants, during which a semistructured questionnaire was completed. A combination of descriptive statistics and qualitative analysis of these data revealed that social and cultural factors formed the basis of patients’ and informal carers’perceptions of cardiovascular risks and social information networks provided the main source of informationabout cardiovascular risk. For the staff, known risk factors based on epidemiological evidence (lack of exercise and diet) formed the basis of their perceptions of the patients’ cardiovascular risk factors. However, for all the participant groups (i.e. patients, informal carers and staff) the risk factors – diet and exercise were indicated as being the patients’ intended lifestyle changes., The results illustrate potential interplay between ‘social’ and ‘cultural’ context and perceptions of cardiovascular risk and incongruency between perceptions of risk and perceptions of the patients’ intended lifestyle change. These results may assist nurses in giving effective advice to patients and relatives about lifestyle change following myocardial infarction and inform future policy for cardiac rehabilitation.

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Exploring identity in the 'figured worlds' of cancer care-giving and marriage in Australia

Following changes in the structure and funding of the Australian medical system, patients have become consumers' or clients'. Family and friends have become carers' or caregivers', signifying their increased responsibilities as patients move from hospitals to communities. While policy makers embrace the term carer', some argue that the title is not widely recognised and has disempowering connotations. This paper examines spouses' reflections on the term carer' based on qualitative interviews with 32 Australians caring for a spouse with cancer from a study conducted between 2006 and 2009. Recruitment involved survey and snowball sampling. Following a grounded theory approach, data collection and analysis were performed simultaneously. Using Holland and colleagues' sociocultural identity as practice' theory and a thematic approach to analysis, findings depict identification with the spouse' and carer' label as relationally situated and dependent on meaningful interaction. Although others argue that the term ‘carer’ is a ‘failure’, these findings depict identification with the label as contextual, positional and enacted, not fixed. Furthermore, and of most significance to practitioners and policy makers, the title has value, providing carers with an opportunity to position themselves as entitled to inclusion and support, and providing health professionals with a potential indicator of a spouse's increased burden.

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J15 A care model in huntington's disease: delivering care with carers

Introduction The multi-faceted nature of Huntington's disease (HD) presents an argument for professionals to work in close collaboration with care givers in training and service provision. It is argued that there is a case to further develop services where part of the required care is jointly delivered by professionals and carers at the same clinical setting. This will enhance mutual understanding of the scientific and clinical aspects of HD together with specific individual needs. While professionals are at risk of overgeneralization and ‘stereotyping’ patients, carers find it difficult to disentangle HD from the ‘person’ behind it. It is also sometimes difficult for carers to utilize the outcome of various assessments therapeutically to benefit their loved ones and ‘lighten up’ their care giving burden. Our model Carers are usually invited to give formal talks to the team and trainees. A carers’ representative is always invited to service development meetings. That person does also act as a mediator seeking other carers’ views and communicating any concerns to managers. Similarly, our team members are regular attendees to the local support group meetings. This is not only for educational purposes but also to communicate and seek views on service changes. Team members did joint publications with carers. In the context of our inter-disciplinary clinic, a carer is always available at the waiting area explaining to patients what they should expect. She also provides information about the disorder and the role of the support group using a variety of posters and leaflets. Many carers take the opportunity to discuss their concerns; often raising different matters with ‘a fellow carer’ than with other team members. She will then attend part of the meeting after the clinic to feedback on how the clinic was run. Further, that carer spends time with trainees who find talking to a carer with a firsthand experience of HD quite enlightening. They are then able to appreciate the consequences of this disorder on family dynamics. They also have a better understanding of how scientific and clinical information be personalized to help patients and families. Conclusion The value of involving carers in shaping services and tailoring individual care plans as well as training junior clinicians cannot be over estimated.

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Economic valuation of informal care: the contingent valuation method applied to informal caregiving

This paper reports the results of the application of the contingent valuation method (CVM) to determine a monetary value of informal care. We discuss the current practice in valuing informal care and a theoretical model of the costs and benefits related to the provision of informal care. In addition, we developed a survey in which informal caregivers' willingness to accept (WTA) to provide an additional hour of informal care was elicited. This method is better than normally recommended valuation methods able to capture the heterogeneity and dynamics of informal care. Data were obtained from postal surveys. A total of 153 informal caregivers and 149 care recipients with rheumatoid arthritis returned a completed survey. Informal caregivers reported a mean WTA to provide a hypothetical additional hour of informal care of 9.52 Euro (n=124). Many hypotheses derived from the theoretical model and the literature were supported by the data. CVM is a promising alternative for existing methods like the opportunity cost method and the proxy good method to determine a monetary value of informal care that can be incorporated in the numerator of any economic evaluation. Copyright © 2004 John Wiley & Sons, Ltd.

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'Time and space': carers' views about respite care

The needs of carers have become more visible since the Carers Recognition & Service Act (1995). Although the demand for respite care is apparent it has proven much harder to establish its precise benefits using quantitative analysis. Some studies have shown no benefit at all to carers and the only clear benefit to emerge from more elaborate randomized controlled trials is a modest reduction in caregiver distress. Quantitative instruments may miss some of the benefits. We embarked on a qualitative study to determine what carers themselves said about the benefits or otherwise of respite care. Twenty-three carers were interviewed about their experiences of respite care and qualitative themes were derived from the transcripts of these semi-structured interviews. Caring was conceptualized in terms of costs (physical exhaustion, feelings of despair, lack of recognition and financial losses) and benefits (a sense of closeness to the dependant and enhanced self-esteem). Respite care emerged as a service that offered 'normality' and 'freedom' to the carer. Conversely, it was also perceived in critical terms if there was any shortfall between the quality of professional care compared to their own informal care. However high the quality of respite care, there was the uncomfortable realization by many that this care might be viewed as a signal to the patient, the family and the local community that they were no longer able to cope. Respite care was perceived as a service which, on balance, facilitated informal care and enabled care to continue at home for longer than would otherwise have been possible. The particular component of this service that was most valued was the option of a home-sitting service.

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An evaluation of the domiciliary occupational therapy service in palliative cancer care in a community trust: a patient and carers perspective

In the past 20 years there has been considerable growth in the provision of palliative care services. The shift in emphasis from hospice and hospital care to the development of community services has been significant. This enables people to be cared for at home and is in keeping with Government agenda. While this may be beneficial for the patient and fit in with the wishes of the family, it is likely to put heavy demands on the coping resources of individual carers. The views of service users are of paramount importance when discussing service evaluation and patient, family and carer empowerment. This research presents the findings of an evaluation of the domiciliary occupational therapy service provided for patients in the palliative stage of cancer care in North and West Belfast from the perspective of the patients and carers. For the purpose of this study, the palliative stage of cancer care is defined as the point from which the patient is no longer responsive to curative treatment, until death. A sample of 30 patients and their primary informal carers were selected using purposive sampling. A structured interview was carried out with both the patients and their carers to obtain views. Results suggest that although both patients and their carers value the service provided and report high levels of satisfaction, there are gaps identified in service provision and a lack of clear information among patients and their carers about the role of the occupational therapist and the range of services they can provide. There is a need to build upon the good work being done by domiciliary occupational therapists in the area of palliative cancer care and increase education and resources to ensure that a patient-centred, holistic, approach to care is used, addressing both the needs of the patient and their carers.

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Recognised, valued and supported: next steps for the carers strategy

This strategy identifies the actions that the UK Government plans take over the next four years to ensure the best possible outcomes for carers and those they support. Over the summer of 2010, the Department of Health sought views on what these priorities should be. Over 750 responses were received, representing the views of over 4,000 carers. These views are summarised in an Annex and quotes from respondents are included in the strategy. Key messages included: the need for better and timely access to health, social care and financial information; often feeling excluded by clinicians; finding accessing assessments overly bureaucratic and slow; feeling forced to give up work to care; neglecting their own health and well-being; the need breaks from caring; the value of Carer’s Allowance is considered inadequate; and more needs to be done to identify and support young carers. Four priority areas have been identified for the strategy: supporting those with caring responsibilities to identify themselves as carer

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Preference for a single or shared room in a UK inpatient hospice: patient, family and staff perspectives

Objective This study investigated the preferences of patients, family and staff for single or shared rooms in a UK hospice.

Method Semistructured interviews were conducted with patients, informal carers and staff at a hospice, focusing on room type preference.

Results 14 current and former hospice inpatients, 15 patients attending the hospice day centre, 23 carers of current and former inpatients and 10 hospice staff were interviewed. Patients most often stated a preference for a shared room, especially if they had experience of being in this room type at the hospice. The main reason for this preference was the company of others. Patients preferring single rooms cited the benefits of increased privacy, reduced noise and private facilities. Other patients said their room preference would depend on how ill they were. Carers valued the social contact and increased staff presence in shared rooms, but felt that single rooms were easier for visitors and more appropriate when patients reached the end of life. Staff found it easier to observe patients in a shared room, and to maintain privacy and confidentiality in a single room.

Conclusions The study concludes that single and shared rooms should be available in a hospice. Innovative planning can enable the social benefits of shared rooms to be maintained without compromising patients’ privacy and dignity.

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The changing role of users and carers

The changing role of users and carers in the care system is examined. The four main user groups are identified as those with physical disabilities, learning disabilities or mental health problems and older people. The growth of the Disabled Living Movement since the 1970s has radically altered thinking and policy, but changes in practice have been slower. Normalisation theory has dominated service development for those with learning disabilities. Difficulties in implementing a care in the community policy for mental health are discussed. Service rationalisation is identified as a key factor facing older people. Their number and poor organisation in terms of pressure group politics have hampered the development of an ideological focus to service provision. The growing recognition of the value and contribution of carers is considered. The implementation of empowerment and consumerism models to integrate users within the care system is discussed.

Self-assessment toolkit: from values to action: the Chief Nursing Officer's review of mental health nursing

This toolkit is intended to complement the report From values to action: The Chief Nursing Officer’s review of mental health nursing. From values to action makes a number of good practice recommendations that apply to nurses working in services for people across the whole age range. Recommendations relate to nursing practice and education and the organisational context in which care is provided. The toolkit is largely for the use of organisations, in consultation with stakeholders – but anyone can use it to reflect on current local nursing-related issues. 

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PRECiS (Patient Reported Evaluation of Cognitive State): Psychometric evaluation of a new patient reported outcome measure of the impact of stroke

OBJECTIVE: Determine the psychometric properties of PRECiS (Patient Reported Evaluation of Cognitive State): A new patient-centred, patient reported outcome measure for perceived impact of cognitive problems, developed through qualitative work, systematic review and service user consultation.

DESIGN: An observational study exploring acceptability, internal consistency, construct validity, inter-rater reliability and test-retest reliability, with opportunistic qualitative data on sensitivity to change.

SETTING: Home visits in the community.

PARTICIPANTS: Stroke survivors with self-reported cognitive difficulties and informal carers.

MEASURES: The 27 item PRECiS was self-completed with support, and proxy completed by informal carers. We collected descriptive cognitive screening test data, and measures of overall stroke impact, mood and activities of daily living to explore construct validity.

RESULTS: Data were collected from 159 (visit 1) and 66 (visit 2) stroke survivors and 86 informal carers. PRECiS showed good acceptability (no missing values or floor/ceiling effects, minimal skewness); high internal consistency (α = 0.94, indicative of potential redundancy); with moderate to strong construct correlations in the directions hypothesised (0.40 to 0.74). An intraclass correlation coefficient of 0.85 indicated good test-retest reliability. Where self-reported change had occurred from visit 1 to 2, PRECiS appeared sensitive. Using carers as proxy respondents is not supported by this analysis (inter-rater ICC = 0.43).

CONCLUSIONS: PRECiS is a patient-centred, practical and reliable measure assessing perceived impact of cognitive problems from the unique perspective of stroke survivors.

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Young people supporting parents with mental health problems: experiences of assessment and support

The explosion of interest in young people as carers over the last decade and a half conceals the fact that there are still no reliable estimates of the number of young people with caregiving responsibilities. This is even more problematic in circumstances where the 'looked after' person has a mental health problem. In this study, we reflect on what can be done to identify, assess and support young people in these circumstances. We draw on selected findings from a study that has been examining the constituents of good assessment practice in work with family carers supporting relatives with mental health problems. The study embraces different carer groups but this paper concentrates on the experiences of young carers at one study site where Barnardo's and partner organisations had developed a joint initiative targeting young people who are looking after parents and relatives with mental health problems. Following a review of the literature about young people as carers, the paper describes how Barnardo's worked to support them through its young carers projects. Based on face-to-face interviews with the young people (N = 10) caring for a mother with mental health problems, the main part of the paper provides an account of how they talk about, make sense of and evaluate the support they have received through this combined initiative. The findings underscore the value of one particular young carers project, and provide clues about what lessons may be transferable to other similar projects.

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Resuming previously valued activities post-stroke: Who or what helps

Purpose. In this article, we aim to develop the understanding of what helps or hinders resumption of valued activities up to 12-months post-stroke.

Method. As part of a longitudinal study, semi-structured interviews were conducted with 19 people with stroke and eight informal carers 12-months post-stroke. Interviews covered ongoing effects of stroke, experience of trying to resume activities highlighted as important pre-stroke and factors that influenced progress. Interviews were transcribed, coded and analysed in depth to explore this aspect of the experience of living with stroke.

Results. Valued activities discussed related to employment; domestic and social roles including driving; hobbies, sports and socialising. Outcomes for individuals were influenced by: aspects of physical or cognitive disability; environmental factors; the adaptability of the individual; support from others and professional help. Inability to resume activities impacted on people's sense of self and quality of life, but some tolerated change and presented themselves as adaptable.

Conclusions. This study indicates a long-term role for rehabilitation services such as: identifying the significance of different types of activities; providing access to support and treatment for debilitating symptoms such as fatigue and dizziness; addressing patients' emotional and behavioural responses to their condition; working with patients' wider social networks and where appropriate, supporting adaptation to a changed way of life.

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Systematic review of services providing information and/or advice to people with dementia and/or their caregivers

Background: Information is a key part of service provision to people with dementia and their carers, but there is no systematic review of the evidence. This study aimed to determine whether information services confer significant benefit for quality of life, neuropsychiatric symptoms and carer burden.

Method: A systematic review of intervention studies in people with dementia was carried out, focussing predominantly on the provision of information and/or advice.

Results: Thirteen randomised controlled trials were identified. Two of the three studies measuring quality of life indicated benefit. Significant benefits were also evident for neuropsychiatric symptoms (points difference, −1.48; confidence interval, −2.11 to 0.86), but not carer burden. Most interventions included other key elements such as skills training, telephone support and direct help to navigate the medical and care system.

Conclusion: There is some support for the value of information services, but studies are needed to determine the specific elements that are effective. Copyright © 2011 John Wiley & Sons, Ltd.

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Carers' representations of affective mental disorders in British Chinese communities

Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers' narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients.

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Addressing the needs of caregivers of cancer patients in general practice: a complex intervention

Background This study aimed to develop an innovation to assist general practitioners (GPs) in Australia to proactively address the needs of caregivers of people with cancer. Method Six GPs were video recorded each consulting six actor-patients in their respective practices. All cases depicted caregivers of people with cancer. The patients were instructed to complete a Needs Assessment Tool for Caregivers (NAT-C), before the consultation. Actor-patients were instructed to present the NAT-C to three of the six GPs they consulted, selected at random. Two assessors independently reviewed each consultation performance using the Leicester Assessment Package (LAP). The practitioners and actor-patients focused on the value of the NAT-C and how it could be deployed to best effect in a subsequent ‘stimulated recall session’. ResultsThirty-four consultations were successfully recorded. The mean duration of consultations was 13 min. 47 sec. (range 6 min. 3 sec. to 22 min. 51 sec.). GPs differed in core competencies as measured by the LAP (P0.001), range 37–92%. However, they demonstrated no significant differences in performance (LAP scores) analysed by scenario (P = 0.99). The ‘generalised estimating equation’ (GEE) model identified an improved LAP score in consultations in which the NAT-C was used (average of 3.3 points; 95% CI: –3.99, 10.6), after controlling for the different GPs and scenarios, but this improvement was not statistically significant (P = 0.37). The participants felt that the NAT-C was beneficial and suggested how it could be further refined. Conclusions If this innovation had been formally tested in a randomised trial without assessing its impact on the consultation there might have been significant difficulties with administering the intervention in practice.

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CarenapD -- a need-assessment for families with dementia; first use in Germany

In Germany the community care system is still not developed to meet the needs of families with dementia. The Scottish need-assessment CarenapD (Care Needs Assessment Pack for Dementia) records the need status of persons with dementia and initiates a care plan. Also the needs of informal carers are measured. After translating the assessment into German language, its practicality and adaptability was tested in this study from the perspective of the professional user. Also was tested, how the CarenapD results interpret the community care. The study was conducted as Convergent Mixed Methods Design. CarenapD was used by 12 staff members of different care provider and 3 staff members of the inspector board of the health care insurance system. They assessed 55 persons with dementia two times within 4 months. A questionnaire and analyses of assessment results produce findings for the practicality and adaptability of CarenapD. The assessment user themselves gave practicality and adaptability of CarenapD good values. Otherwise inclusion of persons with dementia into the assessment process was poor and need results show that the communication between assessment user and family needs improvement. For a successful assessment process to record and achieve the needs of service user are more steps of improvement necessary.

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Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: results from a multi-centre implementation study

Background: A previous study in Amsterdam showed that combined family support in the Meeting Centres Support Programme, in which dementia patients and their carers are both supported by one professional staff member, is more effective in influencing behaviour problems and mood of dementia patients living in the community than non-integrated support, such as day care only.

Objective: A multi-centre implementation study tests if similar effects are achieved in other regions of The Netherlands.

Methods: A pretest–posttest control group design was applied. 112 dementia patients who visited psychogeriatric day care in eight community centres across the country and in three nursing homes, and their carers participated in the study. The patients in the experimental group (n = 89) received support from the Meeting Centres Support Programme together with their carers, while the control group (n = 23) received day care only. Behaviour problems (agressive behaviour, inactivity, non-social behaviour) and mood (dissatisfaction, depressive behaviour) were assessed using standardized observation scales. Quality of life was assessed by interviewing the patients.

Results: After 7 months the Meeting Centres Support Programme, compared to regular day care, showed a moderately positive effect on the degree of total behaviour problems (effect size = 0.52), especially on inactivity (effect size = 0.37) and non-social behaviour (effect size = 0.60), a large effect on depressive behaviour (effect size = 0.92) and a moderate effect on self-esteem (effect size = 0.43).

Conclusions: The Meeting Centres Support Programme proves to be more effective than regular day care in influencing behaviour problems, especially inactivity and non-social behaviour, and depressed mood. Participation in the programme also seems to have a positive effect on self-esteem, an important aspect of quality of life. These findings surpass the results of the Amsterdam study and confirm the surplus value of the combined family support in the Meeting Centres Support Programme as compared to regular day care for people with mild to severe dementia. Copyright © 2004 John Wiley & Sons, Ltd.

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Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study

Because of the complex nature of the problems that carers of persons with dementia encounter, several comprehensive support programs for carers were developed in the past decade. One such program is the Meeting Centres Support Program (MCSP) that integrates different types of support for persons with dementia and their carers, which have proved to be effective in practice and/or research. Within the framework of a study into the national implementation of the MCSP, it was investigated whether the positive effects found in carers that participated in the first Amsterdam Meeting Centres, were also achieved in other regions of The Netherlands. A pre-test–post-test control group design with matched groups was applied. In total, 94 carers in the MCSP in eight meeting centres and 34 carers of dementia patients who frequented regular psychogeriatric day care (PDC) in three nursing homes were included in the study. During the study period 23 carers of the MCSP group and 21 carers of the PDC group dropped out. At baseline and after seven months indicators of burden (psychological and psychosomatic symptoms, feelings of burden and time between start of support and institutionalization of the persons with dementia) were measured, as well as potential determinants of burden (sense of competence, coping strategies, experienced support, loneliness and the emotional impact of behaviour problems). Though on a group level no effect was found, either in psychological and psychosomatic symptoms or in the determinants of burden, a subgroup of carers who felt lonely (n = 22) at baseline benefited significantly more from the MCSP than from PDC in terms of psychological and psychosomatic symptoms. A majority of MCSP carers (82.1%) experienced less burden and more professional support. After seven months significantly fewer persons with dementia in the MCSP (4%) were institutionalized as compared to the patients in PDC (29%). Patients in the MCSP participated for a longer period of time before institutionalization. Although the effect on sense of competence of carers that was found in the Amsterdam study was not found in this multi-centre study, the effect on burden and delayed institutionalization of the person with dementia were confirmed. The integrated MCSP also proved more effective than PDC in decreasing psychological and psychosomatic symptoms in lonely carers. Further dissemination of the MCSP is therefore recommended.

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Clarifying and measuring filial concepts across five cultural groups

Literature on responsibility of adult children for aging parents reflects lack of conceptual clarity. The authors examined filial concepts across five cultural groups: African-, Asian-, Euro-, Latino-, and Native Americans. Data were randomly divided for scale development (n = 285) and cross-validation (n = 284). Exploratory factor analysis on 59 items identified three filial concepts: Responsibility, Respect, and Care. Confirmatory factor analysis on a 12-item final scale showed data fit the three-factor model better than a single factor solution despite substantial correlations between the factors (.82, 082 for Care with Responsibility and Respect, and .74 for Responsibility with Respect). The scale can be used in cross-cultural research to test hypothesis that predict associations among filial values, filial care-giving and caregiver health outcomes. [Journal abstract]

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Social work education participation: user and carer participation in social work

This film details the requirements on universities teaching the social work degree to involve service user and carers in their courses. It also sets out the benefits that result from students working with service users and carers, with users and carers describing how this leads to improved practice and how students explaining the value of learning about the realities of people's lives. The film will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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Consumer perspectives of the Australian Home Medicines Review Program: Benefits and barriers

Background: The Australian Home Medicines Review (HMR) is a free consumer service to assist individuals living at home to maximize the benefits of their medicine regimen and prevent medication-related problems. It consists of a pharmacist reviewing a person’s medicines and collaborating with the general practitioner to optimize the individual’s medicine management. The uptake of this service has remained below the projected use, although the program has shown to successfully identify medication-related problems and improve drug knowledge and adherence of the patient.

Objectives: This study investigates the perceived benefits and barriers of the patients regarding the HMR service who have used the service and who are eligible for it but have never used it.

Methods: Consumer perceptions were drawn from 14 semistructured focus groups, with patients and carers belonging to the general HMR target population and consumer segments that have been postulated to be underrepresented with regard to this service.

Results: The major benefits reported were acquisition of medicine information, reassurance, feeling valued and cared for, and willingness to advocate medication changes to the general practitioner. Perceived barriers were concerns regarding upsetting the general practitioner, pride and independence, confidence issues with an unknown pharmacist, privacy and safety concerns regarding the home visit, and lack of information about the program. Participants agreed that the potential benefits of the service outweighed its potential barriers.

Conclusions: It is expected that direct-to-consumer promotion of HMRs would increase the uptake of this valuable service. It would be necessary to ensure that the process and benefits of the service are communicated clearly and sensitively to eligible patients and their carers to obviate common consumer misconceptions and/or barriers regarding the HMR service. Furthermore, any direct-to-consumer promotion of the service must enable patient/carer self-identification of eligibility.

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Role of the home carer

Care workers are introduced to the concepts of access and application of policies and procedures, the organisation’s aims & values and working in partnership with other workers and the service user. It also considers the responsibilities a care worker has, as set out in the General Social Care Council’s Code of Practice for Social Care Workers. This video will help them answer such questions as: What standard of conduct is expected of me? What tasks and activities will I be expected to carry out? Where do I go for advice, information and support? Why should I support the involvement of carers and family? This title, contributes to improving understanding of the various interrelating issues that combine to ensure the role of the care worker is central to promoting good principles of care that meet the individual needs of service users.

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Relations between social support, appraisal and coping and both positive and negative outcomes in young carers

This study examined a stress/coping model of adjustment in early caregiving. It was hypothesized that better adjustment would be related to higher social support and approach coping, and lower stress appraisals and avoidant coping. One hundred young carers aged 10-25 years completed questionnaires. Predictors included choice in caregiving, social support, stress appraisal and coping. Dependent variables were global distress and positive outcomes (life satisfaction, positive affect, benefits). Correlations supported all hypothesized relations between the stress/coping predictors and adjustment outcomes. Regression analyses showed social support as the strongest predictor of adjustment, whereas coping and choice in caregiving emerged as weaker predictors and stress appraisal was unrelated to adjustment. The stress/coping framework and findings have the potential to inform interventions designed to promote well-being in young carers. Copyright © 2007 SAGE Publications Ltd.

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Evaluation of a brief educational program for dementia carers: the AENEAS Study

Objective: To evaluate the efficacy of a practical, easily implemented, educational intervention in group format for informal carers of persons with dementia. Methods: Multi-centre, randomised, controlled, single-blind trial involving 292 family caregivers of patients with moderate dementia in Alzheimer's disease. Results: Participants valued program components which had a practical impact on their caring role. The intervention achieved minor effects on the participants' psychological quality of life and did not reduce carer depression. It was also not associated with a lower rate of patient nursing home admissions. A subgroup analysis suggested that the intervention actually promoted the decision for nursing home placement in caregivers who were over-burdened and not coping well when they entered the study. Conclusion: To improve dementia carer support, educational components might be intergrated into more comprehensive and individualised interventions which include problem solving and behavioural management strategies, ensure the transfer of newly acquired skills into the everyday context, and adequately deal with the emotional consequences of the caring role. Copyright © 2009 John Wiley & Sons, Ltd.

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A synthesis of knowledge about caregiver decision making finds gaps in support for those who care for aging loved ones

We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors.

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Respite: carers' experiences and perceptions of respite at home

Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.

Method: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.

Results and Discussion: Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.

Conclusions: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.

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Service user and carer involvement: beyond good intentions

The increasing focus on the involvement of people who use health and social care services and their carers in developing services and in social work education has the potential to bring significant change. This book examines the challenges in enabling people who are `experts by experience' to participate in an agenda which is largely dominated by 'top-down' managerial practices. Several themes run through the book. The enactment of power is examined closely, as is the value of maintaining a grassroots approach, driven by the views of those with direct experience of health and social care services. Based on an unique collaboration between academics, carers and care users who have worked together on a project to develop the involvement of service users and carers in social work education, this book identifies practices that go beyond good intentions to bring about significant change. The contributors share their experiences of participation between people who care, people who use care services and those who provide care services. The values and skills for active involvement of carers and service users in the delivery of care services are discussed and contracted with participation models which merely function as management audit tools or as public relations exercises. The current climate of political and professional commitment to such service user and carer involvement is assessed and critically reviewed. This book will interest to a broad readership, including people who use health and social care services; students of health, social care and social work; academics involved in teaching health and social care and practitioners and policy makers.

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Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty

Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of adults with learning difficulties in north-east England and their family and to appraise their care. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.

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Current perceptions of respite care: experiences of family and informal carers of people with a learning disability

Access to regular, high-quality respite care has a beneficial impact on a carer’s ability to fulfil their caring role, but provision varies widely. The current study aims to report family and informal carers’ perceptions of respite care services offered to them by their local authority. A mixed method, triangulated design, yielded both quantitative and qualitative data. Members of a parent/carer federation were sent a questionnaire which included a section on ‘respite care’; 151 of 647 responded. Two focus groups were held with 15 carers who had previously completed the questionnaire. The majority of carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were evident between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities constituted respite care and for whom the service was being provided.

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The autism strategy (2013-2020) and action plan (2013-2016)

This Strategy (2013 – 2020) and Action Plan (2013 – 2016) sets out the Northern Ireland Executive’s commitment to improving services and support for people with autism in Northern Ireland. It has been prepared as a result of the Autism Act (Northern Ireland) 2011, which required the Department of Health, Social Services and Public Safety (DHSSPS) to lead on the development and implementation of a cross departmental Autism Strategy. The Strategy and Action Plan have been developed in accordance with articles stated in the United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) to support the values of dignity, respect, independence, choice, equality and anti-discrimination for people with autism, their families and carers. The UNCRPD articles have informed the themes, strategic priorities and actions in the Strategy and Action Plan. The Strategy sets out eleven key themes: awareness; accessibility; children, young people and family; education; transitions; employability; independence, choice and control; access to justice; being part of the community; participation and actice citizenship.

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Relatives in end-of-life care - part 1: a systematic review of the literature the five last years, January 1999-February 2004

Aim. To review systematically research conducted during the past five years focusing on the relatives' situation and needs in end-of-life care. Background and aim. That relatives make a large contribution in the care of the dying is well-known. In this situation, relatives often have to solve many new practical problems in the care as well as dealing with the sorrow of both themselves and the dying person. In recent years, palliative care has been developed in many countries and many new studies have been carried out. Methods. A systematic search of the literature was performed in the CINAHL and Medline databases. Of the 94 papers analysed, there were 59 qualitative and 35 quantitative studies with differing designs. The studies were carried out in 11 countries and were published in 34 different journals. Results. The results were categorized in two main themes with several subthemes: (1) being a close relative – the situation: (i) exposed position – new responsibility, (ii) balance between burden and capacity and (iii) positive values; (2) being a close relative – needs: (i) good patient care, (ii) being present, (iii) knowing and communicating and (iv) support from and trusting relationship with the professional. The relative's feelings of security and trust in the professional were found to be of great importance. 

Conclusion.  More than twice as many studies had a descriptive/explorative design, which is of importance in the assessment of evidence. However, different studies complement one another and in summary, it can be said that analytic evidence is unequivocal: good patient care, communication, information and the attitude of the professional are of decisive importance regarding relatives' situation. These results are also in accord with earlier review studies.

Relevance to clinical practice.  Staff members have a great deal of responsibility for assuring that the patient feels as good as possible, facilitating relatives’ involvement based on the family's wishes and limiting the stress and difficulties experienced by the family. The results showed that the relative's satisfaction could depend on the attitude of the professional as well as on good communication, good listening and good information. This can also be viewed as a prerequisite for the professional to get to know the family and to provide ‘care in the light’.

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Study protocol for the development of a European measure of best practice for people with long term mental health problems in institutional care (DEMoBinc)

Background: This study aims to build a measure for assessing and reviewing the living conditions, care and human rights of people with longer term mental health problems in psychiatric and social care institutions. Protection of their human rights is imperative since impaired mental capacity secondary to mental illness can make them vulnerable to abuse and exploitation from others. They also constitute a major resource pressure for mental health services, social services, informal carers and society as a whole.

Methods/Design: domains are identified by collating results from: i) a systematic review of the literature on institutional care for this service user group; ii) a review of the relevant care standards in each participating country; iii) Delphi exercises in partner countries with mental health professionals, service users, carers and advocates. Common domains and cross-cutting themes are agreed by the principal researchers and an international expert panel. Items are developed to assess these domains and incorporated into the toolkit which is designed to be administered through a face to face interview with the institution's manager. The toolkit is refined in response to inter-rater reliability testing, feedback from interviewers and interviewees regarding its utility, and feedback from key stakeholders in each country about its ability to deliver information that can be used within each country's established systems for quality assessment and review. Cross-validation of the toolkit ratings against service users' quality of life, autonomy and markers of recovery tests whether it can deliver a proxy-measure of the service users' experiences of care and the institution's promotion of their human rights and recovery. The ability of the toolkit to assess the "value for money" delivered by institutions is investigated by comparing toolkit ratings and service costs.

Discussion: The study will deliver the first international tool for the assessment of the quality of institutional care for people with longer term mental health problems that is accurate, reliable, informative, useful and easy to use.

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The economic and social cost of dementia in Ireland

The economic and social burden of dementia on society is the value of all the resources used to prevent, diagnose, treat, and generally cope with the illness. This article assess the overall resource implications of dementia in Ireland. Six main areas are covered in the cost analysis as follows: mortality and life years lost, in-patient acute care, in-patient psychiatric care, residential long-stay care, family care, and primary and social care in the community. The critical role of carers in maintaining people with dementia in their own home is reflected in the results showing that family care accounts for almost 50 percent of the overall resource burden, based on an opportunity cost valuation of carer time.

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Community palliative care nurse experiences and perceptions of follow-up bereavement support visits to carers

Community (district) nurses (CNs) are well positioned to provide follow-up home visits to bereaved families and carers of their recently deceased palliative clients. An Australian survey of CN's (n = 58, response rate 29%) described their experiences of bereavement support visits, perceptions of their role in bereavement care and their professional support needs. Although positive experiences were commonly reported, with 95% of participants considering bereavement follow-up visits as consistent with their role, 53% found the visits difficult for reasons such as the nurse or client not understanding the purpose, the CN‘s excessive personal identification with the client's situation, the emotional intensity of visits, and lack of confidence or skills despite prior training. The nature and quality of the CN‘s prior relationship with the bereaved family was an important determinant of the visits’ success. Results highlight the value of bereavement support visits, while identifying professional development needs. Managing emotionally intense episodes should receive priority in preparing CN's for this challenging role.

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Tactile acuity training for patients with chronic low back pain: a pilot randomised controlled trial

Background: Chronic pain can disrupt the cortical representation of a painful body part. This disruption may play a role in maintaining the individual’s pain. Tactile acuity training has been used to normalise cortical representation and reduce pain in certain pain conditions. However, there is little evidence for the effectiveness of this intervention for chronic low back pain (CLBP). The primary aim of this study was to inform the development of a fully powered randomised controlled trial (RCT) by providing preliminary data on the effect of tactile acuity training on pain and function in individuals with CLBP. The secondary aim was to obtain qualitative feedback about the intervention.

Methods: In this mixed-methods pilot RCT 15 individuals were randomised to either an intervention (tactile acuity training) or a placebo group (sham tactile acuity training). All participants received 3 sessions of acuity training (intervention or sham) from a physiotherapist and were requested to undertake daily acuity home training facilitated by an informal carer (friend/relative). All participants also received usual care physiotherapy. The primary outcome measures were pain (0-100visual analogue scale (VAS)) and function (Roland Morris Disability Questionnaire (RMDQ)). Participants and their informal carers were invited to a focus group to provide feedback on the intervention.

Results: The placebo group improved by the greatest magnitude for both outcome measures, but there was no statistically significant difference (Mean difference (95%CI), p-value) between groups for change in pain (25.6 (-0.7 to 51.9), p = 0.056) or function (2.2 (-1.6 to 6.0), p = 0.237). Comparing the number of individuals achieving a minimally clinically significant improvement, the placebo group had better outcomes for pain with all participants achieving ≥30% improvement compared to only a third of the intervention group (6/6 vs. 3/9, p = 0.036). Qualitatively, participants reported that needing an informal carer was a considerable barrier to the home training component of the study.

Conclusions: This pilot RCT found tactile acuity training to be no more effective than sham tactile acuity training for function and less effective for pain in individuals with CLBP. That the intervention could not be self-applied was a considerable barrier to its use.

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Growing older together: ageing and people with learning disabilities and their family carers

Purpose – This article aims to explore the new challenge posed by the first generations of people with learning disabilities who are now living into older age in significant numbers. Most are living with family carers, who are themselves ageing. This represents a major transition in people's lives and one to which services must respond if a normal life event is not to be turned into a crisis. Though this issue has been acknowledged by government, much more needs to be done to provide people with learning disabilities and their families with the necessary support to enjoy a healthy and active old age. 

Design/methodology/approach – This article draws on the work of the authors for over a decade in this field. 

Findings – Learning disabled people are likely to experience the age discrimination common in much older people provision and practice and the caring relationship is undermined in the short and long term. Evidence on the extension of personalisation indicates that it presents very considerable challenges for this group of families. 

Practical implications – More information is needed on this growing population. More preventative support is needed to sustain the caring relationship while the family is living together, to support families to plan for the future, and to provide support when the caring relationship breaks down. 

Originality/value – The article draws together data from the fields of ageing, learning disability and family care to highlight the increasing challenge, which this growing, but neglected, population presents both for policy and practice. It examines the implications for both the older people themselves and for the ageing family carers with whom the majority live and of current government policy in social care and welfare benefits for this very vulnerable group.

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Living matters dying matters: a palliative and end of life care strategy for adults in Northern Ireland

The Northern Ireland Health Minister launched 'Living Matters Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland’. Palliative and end of life care is the active care of patients with advanced progressive illness. This report outlines the strategy and identifies palliative and end of life care as a continuum of care that evolves as a person's condition progresses. This, the report suggests, is an integral part of care delivered by all health care professionals, families and carers, to those living with, and dying from any advanced, progressive and incurable condition. The strategy highlights how palliative and end of life care should focus on the person rather than the disease, and aims to ensure quality of life for those living with an advanced, incurable condition. The 5 year strategy presented offers vision and direction for service planning and delivery, and has been developed so implementation fits within the existing legal framework. The strategy builds on current

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Interactive health communication applications for chronic disease: patient and carer perspectives

BACKGROUND: Interactive Health Communication Applications (IHCAs) are computer-based, usually web-based, information packages for patients that combine health information with at least one of social support, decision support, or behaviour change support. These are innovations in health care and their effects on health are uncertain.

OBJECTIVES: To assess the effects of IHCAs for people with chronic disease.

SEARCH STRATEGY: We designed a four-part search strategy. First, we searched electronic bibliographic databases for published work; second, we searched the grey literature; and third, we searched for ongoing and recently completed clinical trials in the appropriate databases. Finally, researchers of included studies were contacted, and reference lists from relevant primary and review articles were followed up. As IHCAs require relatively new technology, the search time period commenced at 1990, where possible, and ran until 31 December 2003.

SELECTION CRITERIA: Randomised controlled trials (RCTs) of IHCAs for adults and children with chronic disease.

DATA COLLECTION AND ANALYSIS: One reviewer screened abstracts for relevance. Two reviewers screened all candidate studies to determine eligibility, apply quality criteria, and extract data from included studies. Authors of included RCTs were contacted for missing data. Results of RCTs were pooled using random-effects model with standardised mean differences (SMDs) for continuous outcomes and odds ratios for binary outcomes; heterogeneity was assessed using the I(2 )statistic.

MAIN RESULTS: We identified 24 RCTs involving 3739 participants which were included in the review.IHCAs had a significant positive effect on knowledge (SMD 0.46; 95% confidence interval (CI) 0.22 to 0.69), social support (SMD 0.35; 95% CI 0.18 to 0.52) and clinical outcomes (SMD 0.18; 95% CI 0.01 to 0.35). Results suggest it is more likely than not that IHCAs have a positive effect on self-efficacy (a person's belief in their capacity to carry out a specific action) (SMD 0.24; 95% CI 0.00 to 0.48). IHCAs had a significant positive effect on continuous behavioural outcomes (SMD 0.20; 95% CI 0.01 to 0.40). Binary behavioural outcomes also showed a positive effect for IHCAs, although this result was not statistically significant (OR 1.66; 95% CI 0.71 to 3.87). It was not possible to determine the effects of IHCAs on emotional or economic outcomes.

AUTHORS' CONCLUSIONS: IHCAs appear to have largely positive effects on users, in that users tend to become more knowledgeable, feel better socially supported, and may have improved behavioural and clinical outcomes compared to non-users. There is a need for more high quality studies with large sample sizes to confirm these preliminary findings, to determine the best type and best way to deliver IHCAs, and to establish how IHCAs have their effects for different groups of people with chronic illness.

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Narrative research methods in palliative care contexts: Two case studies

Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed, The authors' contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals 'perceived illness states and symptoms, care-related needs, behaviors, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients' experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management.

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Finding a voice: the experiences of Chinese family members participating in family support groups

Family support groups (FSG) are an important source of intervention for caregivers of an older, frailer, or ill family member. Whether and how FSG works within ethnic minority groups is not well understood, however. Drawing on data from a sub-set of a larger qualitative study focused on exploring the impact of participating in a family support group, this study examined how culture influenced the FSG experience of Chinese family caregivers. In-depth, personal interviews were conducted with six Chinese family caregivers about their experiences participating in a family support group. Analysis suggested that while many of the participants' experiences with the family support groups were not inconsistent with those reported by mainstream participants, the overarching theme that dominated their stories was different and was strongly linked to culture by all of the participants. Specifically, participants framed their experience in the support groups as pivotal for helping them become more assertive in relation to the care needs of their relative and themselves. Through the process of attending the groups, participants began to: (1) challenge the cultural values and beliefs about “speaking out” as negative, (2) reframe and recognize the value of “speaking out” as an important aspect of care provision, and (3) re-envision a new framework for providing care. This enabled family members to reposition themselves in their care-partnering role and find a voice within the broader health care system.

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Are persons with cognitive impairment able to state consistent choices?

Purpose: This study examined the decision-making capacity of persons with cognitive impairment with respect to their everyday care preferences and choices. This is the first in a series of articles to report on findings from a larger study that examines choice, decision making, values, preferences, and practices in everyday care for community-dwelling persons with cognitive impairment and their family caregivers. Design and Methods: Fifty-one respondent pairs, or dyads, were interviewed, that is, persons with cognitive impairment (n = 51) and their family caregivers (n = 51). All persons with cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. The family caregiver was interviewed once. Results:Persons with mild to moderate cognitive impairment (i.e., Mini-Mental State Exam scores 13–26) are able to respond consistently to questions about preferences, choices, and their own involvement in decisions about daily living, and to provide accurate and reliable responses to questions about demographics. Implications: Including the perspective of persons with cognitive impairment in both research and practice has the potential to enhance their autonomy and improve their quality of life.

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Carers' perspectives on their needs and local authority occupational therapy practice

Unpaid family carers are the main providers of care for older people in the community. Local authority occupational therapists are required by law to assess the needs of such carers in their work, targeting their interventions to support carers' roles. This small qualitative study identified the perceived needs of nine family carers of adults with physical disabilities in one English county, exploring the extent to which these needs were met by local authority occupational therapists.

Data were collected from semi-structured qualitative interviews with nine family carers. These interviews were transcribed verbatim and analysed using elements of grounded theory methodology. Six varied categories of carers' needs emerged.

Occupational therapists met the participants' needs for practical assistance and information, but not for respite or financial assistance. Regarding support network issues, the participants reported poorly integrated community services and little initial awareness of occupational therapy. Once seen by an occupational therapist, however, they wished to remain ‘on file’ to gain instant access to a valued source of support. The recommendations made include the generation of family carer targeted occupational therapy information resources, ongoing therapist liaison to raise general practitioners' familiarity with local service provision and additional research.

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What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up

Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people, to check the attributes and develop them into the measure.

Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.

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Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?

Objectives: To investigate whether community-based (CO) day care with carer support according to the proven effective Meeting Centres Support Programme model is associated with higher satisfaction of people with dementia (PwD) and their informal caregivers (CG) and with a higher job satisfaction among care staff compared to traditional nursing home-based (NH) day care.

Method: Data were collected in 11 NH day care centres and 11 CO day care centres. User satisfaction of PwD and CG was evaluated in the 11 NH day care centres (nPwD = 41, nCG = 39) and 11 CO day care centres (nPwD = 28, nCG = 36) with a survey after six months of participation. Job satisfaction was measured only in the six NH day care centres that recently transformed to CO day care, with two standard questionnaires before (nSTAFF = 35), and six months after the transition (nSTAFF = 35).

Results: PwD were more positive about the communication and listening skills of staff and the atmosphere and activities at the CO day care centre. Also, CG valued the communication with, and expertise of, staff in CO day care higher, and were more satisfied with the received emotional, social and practical support. After the transition, satisfaction of staff with the work pace increased, but satisfaction with learning opportunities decreased.

Conclusion: PwD and CG were more satisfied about the communication with the staff and the received support in CO day care than in NH day care. Overall job satisfaction was not higher, except satisfaction about work pace.

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