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The following resources examine the policies, processes and methods in assessment of carers' needs.

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Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan

Background Limited comprehension of the concept of palliative care and misconceptions about it are barriers to meaningful utilisation of palliative care programs. As caregivers play an integral role for patients with terminal illness, it is necessary to assess their perceptions and attitudes towards the palliative care approach. Method A cross-sectional survey was conducted. Data was collected from the Aga Khan Hospital in-patient and out-patient departments and home-based palliative care services. All adult caregivers who met the inclusion criteria and consented, completed a questionnaire till the sample size was reached. Univariate and multivariate multivariable analysis was done and results were reported as crude prevalence's, crude and adjusted prevalence ratios with 95% confidence intervals using Cox-proportional hazard algorithm. Mean difference of knowledge and attitude scores by caregiver variables were assessed using one-way ANOVA. SPSS version 18 was used and a p-value of less than 5% was treated as significant. Results Out of 250 caregivers more than 60% were 40 years or less, majority were males and at least graduates. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had enhanced understanding about palliative care. Individuals under 40 years old, those with an education level of at least grade 10, children or relatives were found to have significantly more enhanced knowledge about palliative care. The majority believed that the patient should be informed about the diagnosis and should be facilitated to carry out routine activities and fulfill their wishes. Conclusion Nearly half of the caregivers had enhanced understanding of the palliative care approach. They showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that palliative care should be offered to everyone suffering from a terminal illness and, secondly, that this approach encompasses not just physical, but also psychological and social needs of the patient and the family. These findings will help inform the establishment of a palliative care program that fills the gaps in comprehension and knowledge of caregivers.

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Elder Abuse Assessment Tools and Interventions for use in the Home Environment: a Scoping Review

Background and Aim: Caregivers in the home environment have an important role in timely detecting and responding to abuse. The aim of this review was to provide insight into both the existing tools for the assessment of and interventions for elder abuse by formal and informal caregivers in the home environment, and to categorize them according to a public health perspective, into primary, secondary, tertiary or quaternary prevention. Methods: We selected the assessment tools and interventions that can be used by caregivers in the home environment included in previous reviews by Gallione et al (2017) and Fearing et al (2017). To identify published studies after these reviews, a search was performed using PubMed, Cochrane Database, CINAHL and Web of Science. Results: In total, fifteen assessment tools and twelve interventions were included. The number of assessment tools for elder abuse for use in the home environment is increasing; however, tools must be validated over different cultures and risk groups. In addition, the tools lack attention for the needs of vulnerable older persons such as persons with dementia. Existing interventions for caregivers in the home environment lack evidence for addressing elder abuse and do not address potential adverse effects (quaternary prevention). Conclusion: Assessment tools for elder abuse need further testing for validity and reliability for use by caregivers in the home environment. For interventions, meaningful outcome measures are needed. Important to note is that quaternary prevention requires more attention. This argues for taking into account perspectives of (abused) older persons and caregivers in the development of assessment tools and interventions protocols.

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Development of a Daily Use Caregiver Sleep Survey (DUCSS) A Mixed-Method Design

Dementia caregiving is associated with depression, stress, and sleep disturbance. A daily use caregiver sleep survey (DUCSS) was developed to evaluate caregiver sleep. The tool was distributed to 24 informal caregivers and validated using the Rasch model, which indicated that the 17-item survey produced sleep quality measures of sufficient reliability for both group-level and individual-level comparisons (reliability = .87). The sample size was sufficient to provide precise measures of the item's position along the scale (item difficulty) (reliability = .85), so outcomes associated with sleep quality levels could be evaluated. We observed that the structure of the instrument is unidimensional, meaning the wording does not contain systematic biases peripheral to sleep quality. DUCSS is a useful tool for caregiver assessment and monitoring.

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Assessing Grief in Family Caregivers of Individuals With Alcohol Use Disorder or Substance Use Disorder using the Marwit-Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF)

This study assessed grief in caregivers of family members with alcohol use disorder (AUD) and substance use disorder (SUD) using the Marwit-Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF). We used snowball sampling to recruit participants who had family members with AUD and SUD. The sample was comprised of 100 caregivers of family members with AUD and 75 caregivers of family members with SUD. The original MM-CFI-SF was modified by changing the wording to reflect those with AUD and SUD. The 18-item instrument consisted of 3 factors: personal sacrifice burden, sadness and longing, and worry and felt isolation. The professional care of caregivers with family members with AUD and SUD should be addressed by health professionals in the same manner as dementia caregivers. AUD and SUD caregivers may also downplay the distress, require social support, or have a common reaction to the stress and grief encountered. The correlations were moderate to strong and significant between each of the factors for both AUD and SUD caregiver scale.

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Assessing and Addressing Family Caregivers' Needs and Risks in Primary Care

Objectives: To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.; Design: Cross-sectional, national mail-based survey.; Setting: American Medical Association Masterfile database.; Participants: U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62).; Measurements: Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments.; Results: Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type.; Conclusions: Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice. 

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The Family Needs Questionnaire-Revised: a Rasch analysis of measurement properties in the chronic phase after traumatic brain injury

The main aim was to evaluate the measurement properties of the Family Needs Questionnaire-Revised (FNQ-R) in family members of individuals living with severe traumatic brain injury (TBI). A total of 309 family members of individuals with severe TBI from Colombia, Denmark, Mexico, Norway and Spain participated. Rasch analysis of the FNQ-R and its 6 subscales was conducted. The Rasch analysis indicated a lack of fit of the 37-item FNQ-R to one single underlying construct of needs, and less than half of the items were invariant across the countries. Misfit of single items was revealed in the Need for Health Information, Need for Emotional Support, Need for Instrumental Support, Need for Professional Support and Need for Community Support Network subscales. Fit to the Rasch model was obtained after removal of misfitting items. The Involvement in Care subscale had too few items to be adequately assessed by the Rasch approach. The FNQ-R is a well-targeted instrument for assessing the unmet needs of caregivers regarding the need for health information, emotional support, professional support and a community support network after some scoring adjustment and the removal of misfitting items. Caution should be taken when comparing responses across countries. 

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What Are the Factors Identifying Caregivers Who Need Help in Managing Medications for Palliative Care Patients at Home? A Population Survey

Background: For most people, the last 12 months of life are spent living in the community, with the support of family and friends for a number of caregiving functions. Previous research has found that managing medicines is challenging for caregivers. Currently there is little information describing which caregivers may struggle with tasks associated with managing a loved one's medicines. Aim: The aim of this study was to identify factors that flag caregivers who are likely to experience problems when managing someone else's medications. Setting/Participants: The annual South Australian Health Omnibus Survey provides a face-to-face, cross-sectional, whole-of-population view of health care. Structured interviews, including questions covering palliative care and end-of-life care, were conducted with 14,625 residents in their own homes. Results: Of the 1068 respondents who had provided care for someone who died of a terminal illness in the last five years, 7.4% identified that additional support with medicine management would have been beneficial. In addition, three factors were predictive of the need for additional support in managing medicines: aged <65 years; lower household income; and living in a metropolitan region. Conclusion: The findings of this study provide insights to inform the development of palliative care service models to support informal caregivers in the management of medications for people with a life-limiting illness. 

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Role of the Infusion Nurse: Caring for the Family/Lay Caregiver of Older Adults

Approximately 43 500 000 family caregivers provide unpaid care to an adult or child. Most caregivers provide care to older adults, most often parents. Caregivers are often ill-prepared to assist their loved ones, creating or increasing caregiving burden and/or risk of compassion fatigue, potentially leading to critical "caregiving tipping points." Identifying families who are experiencing increased burden or risk of compassion fatigue is a skill that nurses, including infusion nurses, who have unique entree into the caregiving situation, should develop. The purpose of this article is to describe "impending" tipping points before they occur and to offer solutions for how nurses can help caregiving families identify them and access additional supportive services.

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Quality improvement study on early recognition and intervention of caregiver burden in a tertiary hospital

Background: Caregivers play a crucial role in taking over the important task of looking after patients post-hospitalisation. Caregivers who are unfamiliar with patients' post-discharge care often experience caregiver stress, while patients may see deterioration in their condition. As caregivers are our core partners in healthcare, it is therefore necessary for patient navigators to recognise, assess and address caregivers' needs or burden as early as on admission to hospital. Patient navigators are trained registered nurses whose main role is to provide patients and caregivers with personalised guidance through the complex healthcare system.; Objectives: This quality improvement study examined the efficacy of using the Zarit Burden Interview as a tool in helping patient navigators recognise caregiver burden early and the effectiveness of targeted interventions on caregiver burden.; Methods: Various quality improvement tools were used. Eighty-six patient-caregiver dyads who met the inclusion criteria were enrolled. Informal caregivers were assessed for caregiver burden using the Zarit Burden Interview during hospital admission (T0) and again at 30 days postdischarge (T1), post-intervention.; Results: There was significant improvement in the Zarit Burden mean scores from T0 to T1 reported for the 80 dyads who completed the study, even after adjusting for covariates (T0 mean=11.08, SD=7.64; T1 mean=2.48, SD=3.36, positive ranks, p<0.001). Highest burden identified by most caregivers were the personal strain; trying to meet other responsibilities and uncertain about what to do in caring for their loved one. By recognising the different aspects of caregiver burden early, patient navigators were able to focus their interventions.; Conclusion: Early recognition of caregiver burden and targeted interventions were found to be effective at reducing caregiver burden in a tertiary hospital. 

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Psychosocial Distress in Women With Breast Cancer and Their Partners and Its Impact on Supportive Care Needs in Partners

Objectives: While both patients and informal caregivers report high levels of cancer-related distress, supportive care needs of relatives are often not taken into account and little is known about mutual perception of distress within couples. Therefore, we aimed to investigate distress in female patients with breast cancer and their male partners as well as supportive care needs in partners.; Methods: In this cross-sectional study, we recruited women with breast cancer during primary cancer care and their male partners, obtained information on mental distress and supportive care needs through visual analog scales for four mood domains and the Short Form of Supportive Care Needs Survey (SCNS-SF34).; Results: Among 250 eligible patients with breast cancer, 102 patients (40.8%) and their male partners participated. Partners reported higher levels of distress ( p = 0.02), whereas patients (self-assessment) indicated stronger needs for help ( p < 0.001). Men with higher levels of distress were younger ( p < 0.001), and reported a shorter relationship duration ( p = 0.001) compared to partners with lower distress. Partners overestimated distress, anxiety, depression, and need for help in the patient. Patients overestimated partners need for help. The majority of partners (78%) reported at least one unmet need, most frequently related to the health system and information domain.; Conclusion: A systematic distress and needs assessment for women with breast cancer and their male partners is mandatory. The provision of optimal supportive care depends on protocols that include not only psychosocial care for patients but also procedures for managing distress and needs for partners including individual and couple-based interventions. 

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The Perceived Needs Questionnaire for Dementia Informal Caregivers (PNQ‐DIC): development and initial validation

The article discusses research which described the process used to develop and evaluate the psychometric properties of Perceived Needs Questionnaire for Dementia Informal Caregivers (PNQ-IDC) designed to measure the needs of informal dementia caregivers. Topics covered include the identification of needs for which health-care professionals could provide support, the assessment of subjective caregiver burden, and the validity and reliability of the PNQ-IDC.

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Needs, Aggravation, and Degree of Burnout in Informal Caregivers of Patients with Chronic Cardiovascular Disease

This study aimed to answer three main questions with respect to home caregivers for people with cardiovascular disease: (1) Are the needs of home caregivers being met (and at what level)?; (2) what is the level of emotional exhaustion, depersonalization, and personal accomplishment of home caregivers?; (3) what sociodemographic variables of home caregivers are related to unmet needs and level of emotional exhaustion, depersonalization, and personal accomplishment? The study used the Camberwell Modified Needs Assessment questionnaire and the Maslach Burnout Inventory questionnaire. This study reports on 161 informal home caregivers of patients with cardiovascular disease. We found that younger caregivers were less likely to report unmet needs ( p = 0.011), and showed lower rates of burnout on depersonalization and emotional exhaustion. In addition, caregivers who worked more often reported higher levels of met needs ( p = 0.022), and showed lower rates of burnout on depersonalization ( p = 0.005) and emotional exhaustion ( p = 0.018). Subjects residing in urban areas were more likely to report unmet needs ( p = 0.007), and showed higher rates of burnout on emotional exhaustion ( p = 0.006). Older caregivers who are unemployed and reside in cities should be offered programs to determine their unmet needs and to receive support.

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Informal carers

This House of Commons Library briefing paper provides information about the number of informal carers in the UK and the issues they face. It also explains the rights, benefits and support available to informal carers as well as current and previous Government policy on caring.

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Impact of Dementia-Related Psychosis on Patients and Caregivers: The Treatment Imperative

​​​​​​​ Behavioral and psychological symptoms are common in patients with dementia. Especially troublesome are the delusions and hallucinations of dementia-related psychosis (DRP) due to their negative impact on both patients and their carers and family members. This report reviews the impact of DRP on patients and carers, assessment tools, and coping strategies and techniques to help care partners manage DRP. 

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Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study

Objectives Motor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing. Design Qualitative: focus groups, interviews and carer workshops.Setting Three UK MND specialist centres serving a wide range of areas. Participants Stage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4 months to 12.5 years. Results Carers described challenges of a disease that was terminal from the outset, of ‘chasing’ progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both ‘enabling’ domains which identify carers’ needs as co-workers as well as carers’ ‘direct’ needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers. Conclusions Carers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.

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Fear of older adult falling questionnaire for caregivers (FOAFQ‐CG): Evidence from content validity and item‐response theory graded‐response modelling

Aims: (1) Determine the content validity of the Fear of Older Adult Falling Questionnaire‐Caregivers using a panel of gerontological experts and a target sample of family caregivers (Stage 1) and (2) Examine the response patterns of the Fear of Older Adult Falling Questionnaire‐Caregivers and compare it with older adult version of Fear of Falling Questionnaire Revised using graded‐response modelling (Stage 2). Design: Cross‐sectional mixed‐method design. Methods: Five content experts and 10 family caregivers were involved in the Stage 1 study and 53 family caregiver–older adult dyads (N = 106) were included in the Stage 2 study. The content‐validity index and graded‐response modelling were used to analyse data. Results: Among experts, the Fear of Older Adult Falling Questionnaire‐Caregivers content‐validity index for relevancy, importance, and clarity of individual items and total scale ranged from 0.60–1.00 and from 0.77–0.87, respectively. Among family caregivers, the ratings of the item and scale level content‐validity index for relevancy, importance, and clarity ranged from 0.90–1.00 and from 0.95–0.97, respectively. Combining feedback from both groups, we revised one item. Subsequently, the graded‐response modelling revealed that a 1‐factor, 3‐item version of the Fear of Older Adult Falling Questionnaire‐Caregivers had acceptable psychometric properties. Conclusions: The brief 3‐item version of the Fear of Older Adult Falling Questionnaire‐Caregivers is promising for assessing caregivers' fear of their older adult care recipient falling. Impact: A significant concern for family caregivers is fearing that older adult care recipients will fall, but a lack of validated measures limits the study of this phenomena. A 3‐item version of the Fear of Older Adult Falling Questionnaire‐Caregivers has the potential to identify family caregivers with high fear of older adult falling so that fall risk can be appropriately assessed and addressed.

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Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial

Background: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.; Methods: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.; Results: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes.; Conclusion: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals.; Trial Registration Number: NCT03466580. 

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A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life

Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. Design: Longitudinal qualitative study with thematic analysis. Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.

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Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review

Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited. Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature. Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions. Data sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017). Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management. Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease.

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Caregiver Needs Assessment in Primary Care: Views of Clinicians, Staff, Patients, and Caregivers

OBJECTIVES To understand current practices, challenges, and opportunities for a systematic assessment of family caregiversʼ needs and risks in primary care. DESIGN Qualitative study consisting of in‐depth semi‐structured interviews. SETTING Four primary care practices located in urban and rural settings. PARTICIPANTS Primary care clinicians, staff, and administrators (N = 30), as well as older adult patients and family caregivers (N = 40), recruited using purposive and maximum variation sampling. MEASUREMENTS Current experiences, challenges, and opportunities for integrating standardized caregiver assessment into primary care delivery. Interviews were audio‐recorded and transcribed; transcripts were analyzed using the constant comparative method of data analysis. RESULTS: Participating clinicians had been in practice for an average of 12.8 years (range = 1‐36 y). Patients had a mean age of 84.0 years (standard deviation [SD] = 9.7); caregivers had a mean age of 67.0 years (SD = 9.3). There was wide variability in current practices for identifying caregiversʼ needs and risks, encompassing direct and indirect approaches, when such issues are considered. Participants posited that integrating standardized caregiver assessment into primary care delivery could help improve patient care, enhance clinician‐caregiver communication, and validate caregiversʼ efforts. Barriers to assessment included insufficient time and reimbursement, liability concerns, lack of awareness of community resources, and concerns about patient autonomy. To facilitate future uptake of caregiver assessment, participants recommended brief self‐administered assessment tools and post‐screen discussions with practice staff. CONCLUSION: Identification of caregiversʼ needs and risks in primary care is highly variable. Integration of standardized caregiver assessment into practice requires coordinated changes to policy, revision of practice workflows, and an interdisciplinary approach to the development of appropriate assessment tools

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Assessments for Caregivers of Hospitalized Older Adults

A systematic review was conducted to characterize assessments for caregivers of hospitalized older adults. Electronic literature searches of Medline, PsycINFO, and CINAHL of articles on caregiver assessments published in English between 2006 and present were completed. Thirty-three articles underwent full-text review; four included assessments designed to capture caregiver needs in hospital settings. Original articles on the development of these assessments were reviewed for quality appraisal. Four findings emerged from our review. Existing assessments (a) focus on caregivers of specific conditions of older adults, (b) contain a singular caregiving domain, (c) measure caregiver outcomes or simply describe caregiving experiences, and (d) neglect psychometric properties. Health care providers are limited in their selection of assessments with caregivers of hospitalized older adults. This barrier is problematic if we are to equip caregivers to be successful at providing care to older adults. Future research should develop a hospital assessment for caregivers. 

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Development of the empowerment scale for family caregivers of community-dwelling people with dementia in Japan

Aim: This study aimed to develop the empowerment scale for family caregivers of community-dwelling people with dementia (PWD) in Japan (EFCD) and to validate the scale. Methods: The questionnaires were mailed to 820 family caregivers of PWD. The first version of the EFCD based on interviews with family caregivers and elderly care specialists and content validity results was tested. Participants also completed the Revised Scale for Caregiving Self-Efficacy and the General Health Questionnaire. For the EFCD development procedure, construct validity was evaluated by item analysis and exploratory factor analysis. Criterion validity was tested using Spearman's correlations between scores of the three scales. Reliability was evaluated using Cronbach's alpha, intraclass correlation coefficients (ICC), and Bland and Altman analysis. The final model was verified by confirmatory factor analysis. Results: Data from 304 family caregivers were analyzed. Exploratory factor analysis identified a 16-item, four-factor structure for the final version of the EFCD, as follows: (a) Excellent Practice in Dementia Care; (b) Understanding the Essence of Dementia Care; (c) Caring for Oneself as well as for the Person with Dementia; and (d) Having Peers with Shared Support Activities. Reliability and validity of the scale was established using the methods described. Conclusions: The developed EFCD is a reliable and valid measure that provides a simple assessment of empowerment among family caregivers of PWD. 

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Coping Assessment Tools in the Family Caregivers of Patients with Breast Cancer: A Systematic Review

Background: Breast cancer is a problem that affects not only the individual's health and quality of life, but also the functionality of the family system. Caregivers experience stress when their patients cannot cope with the symptoms of their disease. The stress experienced by caregivers gives rise to psychological and physical symptoms in them. This study seeks to present a complete set of tools for assessing coping in the spouses or caregivers of women with breast cancer and evaluate the various instruments developed within these lines of inquiry. Methods: A search was carried out in PubMed, Scopus, Web of Science, CINAHL, PsycINFO, Medline, ProQuest, Scopus and Google Scholar and also in the reference lists of the key articles retrieved for any coping assessment instrument targeting family caregivers' needs that had acceptable psychometric properties and was published until September 2019. The instruments used to assess coping in the spouses and caregivers of women with breast cancer were thus identified and their properties were described. Results: Overall, 88 adaptation assessment tools related to family caregivers of patients with breast cancer were identified in 28 related articles. The tools examine different dimensions of adaptation such as satisfaction, stress, burden and needs of spouses and caregivers of patients with breast cancer. Conclusion: Assessing family caregivers' coping is essential for providing them with the appropriate sources of support. Although several instruments have been used to assess coping in the spouses and caregivers of women with breast cancer, the properties of these instruments have to be examined before they can be more widely implemented.

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Development of a German version of the Carer Support Needs Assessment Tool (CSNAT): The process of translation and cultural adaptation

Objective The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity. Method A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis. Results The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called KOMMA was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers' needs at the cost of the patients. Significance of results A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.

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The Quality of Life as a Predictor of Social Support for Multiple Sclerosis Patients and Caregivers

BACKGROUND: Coping with a diagnosis of multiple sclerosis (MS) is challenging. MS is one of the most common causes of nontraumatic disability in young adults, and patients may need assistance with daily life activities. This article explores the relation between quality of life (QOL) and the perceived available social support among patients with MS and their families. METHODS: The study included 120 subjects (60 patient-caregiver dyads). The average age of the patients was 53.95 ± 10.19 years, and for caregivers, it was 50.8 ± 13.3 years. The study used 2 subscales of the Berlin Social Support Scale (perceived availability of social support and need for social support) and the World Health Organization Quality of Life questionnaire for the assessment of QOL. RESULTS: QOL in MS is lower compared with that of their caregivers in all dimensions except the social domain (P < .001, r = 0.54-0.64). A higher need for social support was experienced by caregivers. The need for support in this group is affected by 3 predictors: QOL in the environmental domain and in the physical domain as well as their subjective health. An improvement in QOL in all the domains is related to an increase of perceived available support, in both the group of patients and that of their caregivers (P < .05, ρ = 0.28-0.59). CONCLUSIONS: Perceived available support is of great importance for both patients and their caregivers to enable them to function better in the physical, mental, social, and environmental domains of their QOL, where social relationships play a predictive role.

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Adaptation and Validation of the Capacity Scale for Informal Caregivers of Elderly Stroke Patients to be Used in Brazil

Background and Purpose: The Portuguese instrument for informal caregivers' skills providing care of aged people after a stroke (ECPICID-AVC) evaluates the capacities that informal caregivers must have for supporting aged stroke survivors. The purpose was to adapt and validate the ECPICID-AVC to be used in Brazil. Methods: A methodological study was conducted. Results: The terms with the lowest degree of comprehension were adapted. The factor analysis suggested the exclusion of three items and that the remaining be grouped into six domains. The factor loadings varied from 0.525 to 0.924. The internal intra-assessor consistency was satisfactory (ICC = 0.94, CI 95%). Total reliability was considered excellent (Cronbach's alpha = 0.914). Conclusions: The ECPICID-AVC is considered appropriate for using in Brazil.

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Integrating family caregiver support into a gynecologic oncology practice: An ASCO quality training program project

PURPOSE A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs. METHODS Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes. RESULTS For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project. CONCLUSION This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.

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The readiness of family in treating post-stroke patients at home: A literature review

Objective: The aims of this systematic review are to review studies on the patient's family readiness in caring for stroke patients at home, the instruments used to assess family readiness and the factors that influence family readiness. Methods: The method used is an electronic database that has been published through PubMed, ScienceDirect, and Wiley online library. The keywords used for article searching is based on the study question. Results: The review of six research articles stated that family readiness in stroke patients is essential to note that the instrument most often used in family preparedness assessments is the Preparedness Caregiver Scale (PCS) instrument. Factors that influence family readiness include Pre-stroke caregiver experience, the strength of caregiver relationships with patients, family understanding and involvement in care, caregiver roles and responsibilities. Conclusion: Family preparedness assessment is critical to note especially for health workers, and the selection of the right instruments will significantly affect the caregiver's family readiness in treating stroke patients at home.

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Berlin Inventory of Caregiver Stress-Dementia (BICS-D)

Background and Objectives: Dementia is becoming increasingly prevalent and family caregivers have been providing most of the care for persons with dementia. This caregiving is a mentally and physically demanding task. "The Berlin Inventory of Caregiver Stress-Dementia" (BICS-D) is a theory driven, multidimensional assessment which was developed as part of the Longitudinal Dementia Caregiver Stress Study (LEANDER).; Research Design and Methods: The inventory consists of 25 subscales with a total of 121 items. Analyses of the psychometric properties of the inventory were based on responses from 594 caregivers.; Results: Factor analyses confirm the multidimensionality of the inventory. The reliabilities of the subscales (Cronbach's α) are between .72 and .95. Validity and sensitivity of the inventory were also confirmed. Differing patterns of burden could be demonstrated for different relatives (partners, children, and daughters-in-law) as well as for different degrees of severity of dementia.; Discussion and Implications: The scores derived for the instrument have support for reliability and validity, and sensitivity to change. It is suitable for the differential measurement of burden experienced by different subgroups of caregivers as well as for the evaluation of interventions. The different subscales of the battery can also be used separately, depending on the study's objectives.

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Development of a family caregiver needs-assessment scale for end-of-life care for senility at home (FADE)

Aim: This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity. Results: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p<0.001). Conclusions: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers’ anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace. 

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Cartography of Factors Influencing Caregivers' Experiences of Loss: A Promising Tool to Help Social Workers Support Caregivers

This article introduces a cartography tool to help social workers work with and support family caregivers. This tool aims to determine (1) which caregivers are likely to need additional support during bereavement and (2) what resources the caregiver has that care teams can rely on for decision-making and planning. The purpose of this article is to present a preliminary assessment of the cartography based on the feedback collected from potential users regarding the tool’s content and usage.

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Bereaved Family Cancer Caregivers' Unmet Needs: Measure Development and Validation

Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.

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Cutoff of the Zarit Burden Interview in predicting depression and anxiety

Background: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role. 

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Bereavement risk assessment of family caregivers of patients with cancer: Japanese version of the Bereavement Risk Assessment Tool

Objectives The Bereavement Risk Assessment Tool (BRAT) seems to be useful in identifying those who are likely to suffer from the more severe consequences of bereavement. To date, however, only a few studies have examined bereavement risk using the BRAT. This study investigated bereavement risk in family caregivers of patients with cancer using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). We also investigated the relationship of bereavement risk with psychological distress and resilience among caregivers to determine the validity of the BRAT-J. Methods We conducted family psychoeducation in the palliative care unit of Tohoku University Hospital with participants who were recruited in this study. Among the participants, 50 family caregivers provided their written informed consent and were included in this study. Participants were assessed using the BRAT-J and completed the Japanese version of the Kessler Psychological Distress Scale (K6) and the Tachikawa Resilience Scale (TRS). Results According to the BRAT-J, five individuals (10%) were in the high category of bereavement risk (level 4 or 5). We also found that family caregivers of patients experienced many different pressures, such as facing the unknown; their own work; and insufficient financial, practical, or physical resources. These issues are associated with various mental problems. Additionally, the level of bereavement risk was significantly correlated with K6 scores (ρ = 0.30, p = 0.032), and the TRS score (ρ = –0.44, p = 0.001). These correlations confirmed previous findings and that the BRAT-J can be an efficient screening tool for the bereavement risk of family caregivers of patients with cancer. Significance of results It appears that the BRAT-J is useful in predicting the likelihood of difficulties or complications in bereavement for family caregivers and could help to provide support with these issues when needed.

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Progress and Policy Opportunities in Family Caregiver Assessment: Results From a National Survey

Family caregivers play an essential role in long-term services and supports (LTSS). Despite numerous calls for robust caregiver assessment policies to determine needs and treat them as partners in care planning, there has been limited information about whether or how states assess caregiver needs and strengths, or use caregiver information. Using cross-sectional survey data from the 2015 Process Evaluation of the Older Americans Act National Family Caregiver Support Program (NFCSP), this study analyzes caregiver assessment policies and practices in 54 State Units on Aging, 619 Area Agencies on Aging, and 642 local service providers. It examines whether and for what purposes caregiver assessments are used, what domains are included, and how well current policies conform to recommended practice. It also recommends that policy makers who influence NFCSP and other LTSS programs develop caregiver assessment practices using a multidimensional framework including more caregiver-focused domains and utilizing assessment data to measure program outcomes. 

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Needs-focused interventions for family caregivers of older adults with cancer: a descriptive interpretive study

Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs’ needs and identify promising needs-focused interventions. Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview. Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need. Conclusions: According to our results, HCPs should systematically include FCs into OACs’ care plan through the use of concrete actions such as the “family systems approach” suggested by Duhamel, and integrate a systematic FC’s needs assessment.

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Exploring the usefulness of indicators for referring people with dementia and their informal caregivers to activating interventions: A qualitative analysis of needs assessments

Background: People with dementia (PWDs) and their informal caregivers frequently report difficulties in maintaining their usual activities. We had previously developed a set of indicators to estimate whether dyadic, activating interventions can meet these needs for activity. This study investigates how PWDs and informal caregivers talk about the indicators in interviews for needs assessments, and how professionals identify activity needs and preferences. Our research goal was to explore the usefulness of the indicators for assessing the activity needs of community-dwelling dyads. Such assessments are needed for appropriate referral to activating interventions. Methods: A dementia case manager assessed the needs of community-dwelling PWDs and their informal caregivers; we carried out secondary analyses on the dataset resulting from the audio-tapes and transcripts. We applied qualitative, deductive content analysis because we wanted to identify both explicit and implicit needs and preferences. We used the indicators that we had developed in previous research as codes. Results: Both PWDs and informal caregivers do explicitly mention needs, preferences, and characteristics related to the indicators in the needs assessments. Possible implicit needs and preferences were frequently identified in their stories. Conclusions: Needs-driven care requires high-quality needs assessments. Both PWDs and their informal caregivers need encouragement to express their latent needs and preferences. In addition, latent needs and preferences have to be further explored in needs assessments to find out the real meaning. The outcomes of this study highlight the significance of structured needs assessments for mapping the activity needs of PWDs and their informal caregivers. Many PWDs and informal caregivers reported activity needs, which suggests that activating interventions may be appropriate. The indicators can help professionals identify activity needs so that they can discuss matching activating interventions with the dyad. 

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Assessing Programs, Methods, and Policies to Engage and Empower Family Caregivers

This issue of Journal of Applied Gerontology includes an impressive collection of articles that highlight interventions, assess moderators, explore methodological approaches and emphasize the value of caregiver assessments, all within the context of supporting and empowering family caregivers. Recognition is growing of the sheer magnitude of caregivers (AARP Public Policy Institute estimates over 45 million) and the impact, both beneficial and challenging, of fulfilling this role. Several of these articles demonstrate that interventions designed to address caregivers’ varying needs, while remaining adaptable in their approaches, are likely to yield more positive participant outcomes. Each of these articles focuses on the caregivers’ needs while validating their caregiving experiences.

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The psychosocial needs and quality of life of family caregivers of patients with organ transplant

Background: Families of patients with organ transplants experience many problems, both with the onset of illness and during the hospitalisation of their relative for an organ transplant. The healthcare providers try their best to give high-quality care to patients. However, they neglect quality of life and psychosocial needs of family caregivers. Aims: This study aimed to assess the psychosocial needs and quality of life of the family caregivers of post-transplant patients and the relationship between these two variables. Methods: This descriptive correlational study was conducted on liver, kidney and bone marrow transplant wards in the largest transplant centre affiliated with a university of medical science in south-eastern Iran. The sample included 230 family caregivers of post-transplant patients, who were selected using quota sampling. Data were collected using the 45-item questionnaire of psychosocial needs (the Critical Care Family Needs Inventory) with five dimensions (assurance, comfort, information, proximity and support), and the Short Form-36 Quality of Life questionnaire with eight scales (physical functioning, physical problems, emotional problems, social functioning, pain, vitality, mental health and perception of health). In the Critical Care Family Needs Inventory, 1 indicates not important and 4 very important. In the Short Form-36 Quality of Life questionaire, 0 indicates the worst health and 100 the best health. Results: The participants rated the mean of their psychosocial needs as important (3.18 ± 0.27). Also, the mean of quality of life of participants was at an undesirable level (45.17 ± 92.66). The psychosocial needs of the caregivers showed a poor, inverse significant relationship with their quality of life (r = −0.16, p = 0.01). Conclusion: The results showed that with increasing psychosocial needs of family caregivers of post-transplant patients, their quality of life declines. Healthcare providers should implement developed plans and appropriate strategies to fulfil psychosocial needs and improve the quality of life of family caregivers of these patients.

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Utilizing evidence-based assessment instruments to detect well-being and distress in English- and Spanish-speaking caregivers of individuals affected by dementia

Objective: The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods: Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results: Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion: As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable. 

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Caregiver emotional distress: external open-behaviour signs

Objectives: To determine whether specific external signs of emotional distress (ESED) can be an indirect measure of emotional distress in caregivers.; Methods: A cross-sectional multicentre design was used. 148 primary caregivers of advanced cancer patients attended in four Spanish palliative care units participated in this study. The emotional distress of caregivers was measured using both the Emotional Distress of Caregivers Scale and a psychological interview. Health professionals collected data using a standard clinical interview process after a brief training period.; Results: More than half the caregivers (60%) presented with emotional distress. A positive correlation (r=0.566) was found between the intensity of ESED and emotional distress per se. Caregivers who presented emotional distress showed more ESED than those that did not (p<0.01). The study found significant differences for the categories 'visible signs of sadness, fear, crying, feeling overwhelmed' (p<0.001), 'difficulty in separating from the patient: family refuses to let the patient make decisions and insists on care' (p<0.001) and 'visible signs of anger, irritability or frequent disagreement with therapeutic measures' (p<0.001). No significant differences were found with respect to gender. The set of items to measure these external signs presented an adequate reliability assessed using Cronbach's alpha (α=0.773).; Conclusions: The assessment of ESED in caregivers could serve as a useful method to assess their emotional distress. Incorporating the systematic assessment of these external signs as part of the assessment of the emotional distress of primary caregivers could improve the overall assessment and treatment provided to these caregivers.

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Barriers and facilitators to implementing the Carer Support Needs Assessment Tool in a community palliative care setting

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an 'add-on' to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.

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State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

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Needs assessment of informal primary caregivers of patients with borderline personality disorder: Psychometrics, characterization, and intervention proposal

Introduction. Informal Primary Caregivers (IPC) of people with borderline personality disorder (BPD) experience a significant burden, making it important to determine their specific needs. Objectives. Cross-sectional study aimed at adapting and establishing the reliability of the Questionnaire on the Needs of Family Members of People with Severe Mental Disorders to identify felt and unfelt needs that may or may not have been met in IPCs of patients with BPD and suggest intervention strategies to effectively address them. Method. The adapted version of the instrument was completed by 80 IPCs of patients with confirmed BPD diagnosis. Results. Cronbach’s alpha coefficients for different groups of needs evaluated through the instrument were: Knowledge/information = .77, Instrumental support = . 78, Participation = .63, and Personal support = .74; and for the total score = .86. The most important unmet felt needs were: 1. having information on interventions for patients and caregivers, legal and administrative aspects, and available support services; 2. having coping skills to deal with crises and manage patients’ risk behaviors; 3. receiving professional care to reduce stress; and 4. being listened by health professionals, express their personal opinions, and need for rest. Conclusions. The adapted instrument showed satisfactory internal consistency in IPCs of patients with BPD. The results highlight the urgent need for interventions for this population, focusing on psychoeducation, assertiveness training, stress management, and problem solving.

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Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Purpose: The caregiver roles and responsibilities scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation.; Methods: The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life-Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline.; Results: Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach's alpha was 0.92 for the CRRS-41; 0.75-0.87 for the subscales. CRRS showed good test-retest reliability (ICC = 0.91), sensitivity to change and the predicted pattern of correlation with validation measures r = 0.75-0.89. The standalone 7-item jobs and careers subscale requires further validation.; Conclusions: Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers.

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Feasibility and Acceptability of Distress Screening for Family Caregivers at a Cancer Surgery Center

OBJECTIVES: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers. SAMPLE & SETTING: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center. METHODS & VARIABLES: Caregivers completed the CancerSupportSource®--Caregiver screening and a brief semistructured interview concerning the screening. RESULTS: Caregivers described the screening as straightforward and comprehensive. They endorsed concerns about their self-care needs but were most likely to request information or a referral for patient-focused concerns. Referrals generated from the program are likely viably addressed with existing supportive care resources. IMPLICATIONS FOR NURSING: Brief, caregiverfocused distress screening is perceived positively by caregivers. Caregivers indicated that they felt it validated the importance of their role and highlighted the hospital's efforts to continually improve care. This screening program may be particularly beneficial in ambulatory surgical centers to efficiently identify caregivers with concerns and provide a point of entry to remediate these concerns. 

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Organising Support for Carers of Stroke Survivors (OSCARSS): study protocol for a cluster randomised controlled trial, including health economic analysis

Background: Stroke often results in chronic disability, with partners and family members taking on the role of informal caregiver. There is considerable uncertainty regarding how best to identify and address carers' needs. The Carer Support Needs Assessment Tool (CSNAT) is a carer-led approach to individualised assessment and support for caregiving that may be beneficial in palliative care contexts. CSNAT includes an implementation toolkit. Through collaboration, including with service users, we adapted CSNAT for stroke and for use in a UK stroke specialist organisation providing long-term support. The main aims of OSCARSS are to investigate the clinical and cost-effectiveness of CSNAT-Stroke relative to current practice. This paper focuses on the trial protocol, with the embedded process evaluation reported separately. Methods: Longitudinal, multi-site, pragmatic, cluster randomised controlled trial with a health economic analysis. Clusters are UK services randomised to CSNAT-Stroke intervention or usual care, stratified by size of service. Eligible carer participants are: adults aged > 18 years; able to communicate in English; referred to participating clusters; and seen face-to-face at least once by the provider, for support. The 'date seen' for initial support denotes the start of intervention (or control) and carers are referred to the research team after this for study recruitment. Primary outcome is caregiver strain (FACQ - Strain) at three months after 'date seen'. Secondary outcomes include: caregiver distress; positive caregiving appraisals (both FACQ subscales); Pound Carer Satisfaction with Services; mood (HADs); and health (EQ-5D5L) at three months. All outcomes are followed up at six months. Health economic analyses will use additional data on caregiver health service utilisation and informal care provision.Discussion: OSCARSS is open to recruitment at the time of article submission. Study findings will allow us to evaluate the clinical and cost-effectiveness of the CSNAT-Stroke intervention, directed at improving outcomes for informal carers of stroke survivors. Trial findings will be interpreted in the context of our embedded process evaluation including qualitative interviews with those who received and provided services as well as data on treatment fidelity. OSCARSS will contribute to knowledge of the unmet needs of informal stroke caregivers and inform future stroke service development.Trial Registration: ISRCTN Registry, ISRCTN58414120 . Registered on 26 July 2016.

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Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia

Background and Objectives: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.; Methods: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.; Results: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.; Conclusions: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.

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Exploring therapeutic interventions to reduce the experience of guilt in carers of people living with dementia

Family carers of people with dementia often describe feelings of guilt, grief and low mood, and are also at increased risk of clinical depression. Through a skilled assessment of a carer’s feelings of guilt, an Admiral Nurse identified specific psychological approaches helpful in relieving this potentially damaging and paralysing phenomenon. Person- and family-centred approaches throughout the assessment process, and addressing the needs of individual family members in expressing their individual emotions and experience to the changes in needs of the person with dementia as they become more complex, are essential to family wellbeing. Identifying and differentiating between guilt, anticipatory grief and depression are essential when planning interventions to support family carers.

[The same article is also published in British Journal of Neuroscience Nursing Vol 14, no. 6 ]

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Development and evaluation of a quality of life measurement scale in English and Chinese for family caregivers of patients with advanced cancers

Background: The quality of life of family caregivers of patients with advanced cancers is an important concern in oncology care. Yet, there are few suitable measurement scales available for use in Asia. This study aims to develop and evaluate a locally derived measurement scale in English and Chinese to assess the quality of life of family caregivers of patients with advanced cancers in Singapore.; Methods: Scale contents were generated from qualitative research that solicited inputs from family caregivers. Six hundred and twelve family caregivers of patients with advanced cancers were recruited, of whom 304 and 308 chose to complete the English and Chinese versions of the quality of life scale, respectively. A follow-up survey was conducted for test-retest reliability assessment. Analyses began with pooling all observations, followed by analyses stratified by language samples and ethnic groups (among English-speaking participants).; Results: Factor analysis identified 5 domains of quality of life. The Root Mean Square Error of Approximation was 0.041 and Comparative Fit Index was 0.948. Convergent and divergent validity of the total and domain scores were demonstrated in terms of correlation with the Brief Assessment Scale for Caregiver and its sub-scales and a measure of financial concern; known-group validity was demonstrated in terms of differences between groups defined by patient's performance status. Internal consistency (Cronbach's alpha) of the total and domain scores ranged from 0.86 to 0.93. Test-retest reliability (intraclass correlation coefficient) ranged from 0.74 to 0.89. Separate analyses of the English- and Chinese-speaking samples and ethnic groups gave similar results.; Conclusion: A new, validated, multi-domain quality of life measurement scale for caregivers of patients with advanced cancers that is developed with inputs from family caregivers is now available in two languages. We call this the Singapore Caregiver Quality Of Life Scale (SCQOLS).

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Identification of Sexual Disinhibition in Dementia by Family Caregivers

Purpose: Sexual disinhibition in dementia is understudied and discrepant frequency rates are reported. Measures designed to capture general disinhibition may under-identify sexual disinhibition, and lack of assessment uniformity may contribute to inconsistent endorsement. The current study aimed to determine: (1) whether an item from a commonly used measure tapping into general disinhibition would detect sexual disinhibition, (2) whether differently worded items specifically addressing sexual disinhibition would elicit inconsistent endorsement, and (3) whether different caregiver types would yield discrepant endorsement.; Methods: Data for this cross-sectional, observational study were collected online using items from the Neuropsychiatric Inventory, Cohen-Mansfield Agitation Inventory, and novel items developed to assess sexual disinhibition.; Patients: In total, 779 family dementia caregivers were recruited from social media caregiver groups.; Results: In total, 26.2% of caregivers who explicitly endorsed sexual disinhibition did not endorse general disinhibition. Frequency of endorsement for sexual disinhibition differed depending upon item wording and nature of the caregiver relationship, including higher endorsement by spouses overall.; Discussion: Inquiring generally about disinhibition may under-identify presence of sexual disinhibition. Lack of standardization may contribute to inconsistent frequency rates and characterization of this problem. More work is needed to better understand and identify sexual disinhibition in dementia.

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Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model

Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.; Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.; Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.; Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.; Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.

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Development of an mHealth application for family carers of people with dementia: A study protocol

Background: The progressive and complex nature of dementia demands carers have specific knowledge and training. However, often carers do not have adequate knowledge and skills, particularly for functional disability care. Aim: This study aims to develop and test the feasibility of an educational and supportive mHealth/smartphone application that addresses the needs of family carers of people with dementia related to functional disability of care recipients. Methods: This mixed method study consists of three phases. In phase one, an online survey and individual interviews with carers will be conducted to assess their needs related to management of functional disability and the development of an mHealth application. Additionally, experts will be consulted to identify their opinions on application development. In phase two, using information from phase one, an mHealth application will be designed and developed. In phase three, a feasibility study will be conducted with carers to identify usability, user adherence, acceptance and experiences with the application. Discussion: This study will generate new knowledge about the needs of carers related to the management of functional disability of people with dementia and the use of smartphones for health-seeking behaviours, and will develop an mHealth application for carers to address the needs related to functional disability care. Conclusion: A mixed method study was designed to develop a user-centred educational and supportive mHealth app for family carers to address needs related to the functional disability of people with dementia consisting of three phases: needs assessment, the designing of the app and a feasibility study.

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Monitoring the sleep patterns of people with dementia and their family carers in the community

Objectives: Gold-standard overnight polysomnography does not reliably capture highly variable sleep patterns across the 24-hour day that are common with dementia and often problematic for carers. We evaluated the reliability of automatically scored actigraphy data as an alternative. Methods: Actigraphy recordings were analysed from 15 community-dwelling people with dementia (135 days total) and 14 of their family carers (124 days total). Manual scoring used participant sleep diaries to identify sleep periods. Automated scoring used the manufacturer's algorithm to score entire records. Results: For people with dementia, automated scoring identified more sleep fragmentation at night and increased sleep during the day, with comparable sensitivity but lower specificity than for carers. Conclusions: Automated scoring offers reasonable agreement with manual scoring and may better describe the fragmented nature of dementia-related sleep, which can be challenging to record accurately in a sleep diary. Automated scoring reduces participant burden and could improve research and treatment protocols. 

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Family assessment of elderly patients with liver disease

Objective: to analyze the structure, development and operation of families of elderly patients with liver disease. Method: this is a qualitative-field study, which used the Calgary Family Assessment Model. The study had as its backdrop of research a philanthropic hospital. The study population consisted of five families of elderly hospitalized patients with liver disease. Results: from the five females families evaluated, two were characterized as extensive, one rebuilt, one was composed of brothers without ties of consanguinity and only one as the nuclear family. It was also possible to verify that the relatives presented themselves as the main caregiver, and that all families presented the monthly average of two minimum wages. Conclusion: taking into consideration that the family participation in the process of illness presents itself as a determinant factor for the satisfactory prognosis of patients, the role of nursing before the evaluation and intervention in the family context will contribute significantly to improved health status and wellbeing of patients and their families.

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Neuropsychological consequences of chronic stress: the case of informal caregivers

Introduction: Caring for a family member with a long-term illness is a significant source of chronic stress that might significantly accelerate the cognitive ageing of informal caregivers. Nevertheless, the absence of a defined theoretical body of literature on the neuropsychology of this population makes it difficult to understand what the characteristic neuropsychological deficits of these caregivers are.; Aims: The main aim of this study is to carry out a systematic review of studies of cognitive deficits present in informal caregivers of people with several chronic pathologies, and analyse the effects of cognitive-behavioural interventions on caregivers' cognition.; Methods: The scientific literature was reviewed following the PRISMA quality criteria for reviews using the following digital databases: PubMEd, PsycINFO, and Dialnet.; Results: Identification of 2046 abstracts and retrieval of 211 full texts led to the inclusion of 38 papers. The studies showed heterogeneous results, but most of the cross-sectional studies reviewed that employed neuropsychological assessments concluded that informal caregivers reported a generalized cognitive deterioration, especially memory dysfunctions (i.e. learning verbal, visuospatial, and digit information). Moreover, they also presented low selective attention and capacity for inhibition, along with slow processing speed. Longitudinal studies confirmed that caregivers whose care situation was more prolonged showed a marked deterioration in their overall cognitive state, memory, processing speed, and vocabulary richness. However, although the patient's death does not seem to reverse the neuropsychological alterations in caregivers, cognitive-behavioural interventions that employ techniques to reduce stress levels, cognitive biases, and inadequate adaptation schemas seem to improve some of the aforementioned cognitive abilities.; Conclusions: Results from this synthesis and critical analysis of neuropsychological deficits in informal caregivers offer guidelines for diagnosing caregivers' cognitive status by including a test battery covering all the domains considered relevant. Finally, given the ability of cognitive behavioural interventions to improve cognition in caregivers, further studies on their long-term effects on caregivers are warranted. Chronic stress entails an acceleration of the cognitive ageing Cross-sectional studies concluded that informal caregivers reported a generalized cognitive deterioration Cognitive-behavioural interventions seem to improve cognitive abilities of caregivers.

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Risky wandering behaviors of persons with dementia predict family caregivers' health outcomes

Objectives: To examine the relationships between dementia persons' risky wandering behaviors and family caregivers' physical and mental health. Methods: A secondary analysis was conducted using the original cross-sectional data from180 dyads. The Risky Wandering and Adverse Outcome model assessed behaviors of eloping and getting lost outside the house for dementia persons. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and hierarchical regressions. Results: The mean age of caregivers was 56.01 years (SD = 13.8); 65% were female. Younger caregivers experienced greater physical fatigue and sleep disturbance. Presence of foreign helpers predicted a reduction in mental and physical fatigue of caregiver (β = −0.186, p <.05; β = 0.198, p <.05, respectively). Getting lost outside of the house influenced caregivers' mental fatigue (β = 0-0.215, p <.05); eloping behavior influenced caregivers' sleep disturbance (β = 0.231, p <.05). Care-receivers' activities of daily living affected caregivers' depressive symptoms (β = −0.179, p <.05). Conclusions: Dementia family caregiver physical and mental health problems have distinct predictors. Employing the Risky Wandering and Adverse Outcome model could inform policy makers regarding long-term care resources to improve dementia care.

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Family caregivers of people who have intellectual/developmental disabilities and asthma: Caregiver knowledge of asthma self‐management concepts—A pilot study

Accessible Summary: Asthma is a problem for many people. Some people need help with their medicines for asthma. People who help with medicines should know how medicines work and how they are used. This study found that many helpers need more education about asthma medicines. Abstract: Background: People who have an intellectual or developmental disability (IDD) and asthma are at greater risk of poor health outcomes. They often require assistance from caregivers when managing their medicines. The objective of this pilot study was to assess the level of understanding of asthma self‐management concepts of family caregivers who provide assistance to people who IDD and asthma. Results will inform future needs assessment and intervention studies. Materials and Methods: Nineteen caregivers of people who have asthma and IDD completed a mailed survey. The survey included scales to measure asthma self‐management concepts, inhaler technique knowledge, medication adherence and control of asthma. The caregivers were instructed to complete most of the scales with reference to the person with IDD. Results: Most caregivers had acceptable health literacy, but had low scores on the asthma self‐management and inhaler technique tests. The most frequently cited barriers to controlling asthma were inadequate caregiver and patient education about the illness as well as knowing and avoiding asthma triggers. The most frequently cited barriers to medication management were knowing inhaler technique, knowledge of medication and forgetting to use medication. Asthma was controlled in 63.2% of patients, while almost 75% of patients were considered nonadherent to controller therapy. Conclusions: Most caregivers had inadequate understanding of asthma self‐management as well as inhaler technique despite having high health literacy. Improving caregiver and patient knowledge and skills may lead to better asthma control.

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Acceptability to patients, carers and clinicians of an mHealth platform for the management of Parkinson's disease (PD_Manager): study protocol for a pilot randomised controlled trial

Background: Parkinson's disease is a degenerative neurological condition causing multiple motor and non-motor symptoms that have a serious adverse effect on quality of life. Management is problematic due to the variable and fluctuating nature of symptoms, often hourly and daily. The PD_Manager mHealth platform aims to provide a continuous feed of data on symptoms to improve clinical understanding of the status of any individual patient and inform care planning. The objectives of this trial are to (1) assess patient (and family carer) perspectives of PD_Manager regarding comfort, acceptability and ease of use; (2) assess clinician views about the utility of the data generated by PD_Manager for clinical decision making and the acceptability of the system in clinical practice.; Methods/design: This trial is an unblinded, parallel, two-group, randomised controlled pilot study. A total of 200 persons with Parkinson's disease (Hoehn and Yahr stage 3, experiencing motor fluctuations at least 2 h per day), with primary family carers, in three countries (110 Rome, 50 Venice, Italy; 20 each in Ioannina, Greece and Surrey, England) will be recruited. Following informed consent, baseline information will be gathered, including the following: age, gender, education, attitudes to technology (patient and carer); time since Parkinson's diagnosis, symptom status and comorbidities (patient only). Randomisation will assign participants (1:1 in each country), to PD_Manager vs control, stratifying by age (1 ≤ 70 : 1 > 70) and gender (60% M: 40% F). The PD_Manager system captures continuous data on motor symptoms, sleep, activity, speech quality and emotional state using wearable devices (wristband, insoles) and a smartphone (with apps) for storing and transmitting the information. Control group participants will be asked to keep a symptom diary covering the same elements as PD_Manager records. After a minimum of two weeks, each participant will attend a consultation with a specialist doctor for review of the data gathered (by either means), and changes to management will be initiated as indicated. Patients, carers and clinicians will be asked for feedback on the acceptability and utility of the data collection methods. The PD_Manager intervention, compared to a symptom diary, will be evaluated in a cost-consequences framework.; Discussion: Information gathered will inform further development of the PD_Manager system and a larger effectiveness trial.; Trial Registration: ISRCTN Registry, ISRCTN17396879 . Registered on 15 March 2017.;

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Validation of the caregiving knowledge questionnaire-my: Measuring knowledge regarding positioning and feeding among Malaysian informal caregivers of stroke patients

Aim: The majority of caregivers for stroke patients in Malaysia are informal caregivers, although there are no valid tools to measure their knowledge regarding caregiving. Therefore, this study validated the Caregiving Knowledge Questionnaire (CKQ-My) as an assessment of Malaysian stroke caregivers' knowledge regarding patient positioning and feeding. Methods: Back-to-back translation was used to produce a bilingual version of the questionnaire. Hand drawings were used to replace photographs from the original questionnaire. Face validity and content validity were assessed, and construct validity was determined by comparing responses from informal caregivers, medical students, and primary care doctors. Finally, the internal consistencies of the subscales were determined. Results: Pretesting showed that the translated version was sufficiently easy to understand. Internal consistency for the positioning subscale (28 items, Cronbach's α = 0.70) and feeding subscale (15 items, Cronbach's α = 0.70) was good. Mean scores for the positioning subscale for caregivers (mean: 17.1 ± 3.9), medical students (mean: 18.9 ± 3.1), and doctors (mean 21.5 ± 2.2) were significantly different (F = 5.28, P ' = 0.011). Mean scores for the feeding subscale for caregivers (mean 13.1 ± 2.5), medical students (mean 16.1 ± 1.9), and doctors (mean 16.1 ± 2.4) also differed significantly (F = 6.217, P = 0.006). Conclusions: CKQ-My has good internal consistency and construct validity for the subscales measuring stroke caregivers' knowledge about positioning and feeding of stroke patients. It has potential as an assessment of effectiveness of caregiver training and for future studies on long-term stroke outcomes in Malaysia.

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Personalisation, personal budgets and family carers. Whose assessment? Whose budget?

Summary: The policy of personalisation in English adult social care prioritises choice and control by service users over the support they receive. Carers also have rights to assessments and support, but these rights have developed separately, so interdependencies between carers and service users may be overlooked. Moreover, it may be difficult to reconcile these divergent policies in routine practice. This article reports findings from a study examining the roles played by carers in England in the processes of assessment, support planning and management of personal budgets for disabled and older people. The study was conducted between January 2011 and February 2013. It involved a survey of 16 adult social care departments across 2 English regions, and interviews with personalisation and carers lead officers in three local authorities. The Framework approach was used to manage the data, and analysis was done thematically. Findings: Practice was fragmented and inconsistent. Carers were reported to be involved in service users' assessments, and also asked about their willingness and ability to continue caring, but not necessarily about their own needs. Separate carers' assessments were reported to be usually offered, but take-up was low and lead officers' opinions about their value varied. Any help given by carers reduced the level of service users' personal budgets, but there was no evidence that carers' own needs (as identified in carers' assessments) were taken into account. Applications: Greater clarity and consistency is needed, especially the linking of service users' and carers' assessments and finding appropriate ways to meet both. These changes will become increasingly urgent with the implementation of the 2014 Care Act. 

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Family caregivers as needed partners: recognizing their role in medicaid managed long‐term services and supports

Adults with intellectual and/or developmental disabilities (IDD) in the United States are supported by both formal Medicaid‐funded long‐term services and supports and family caregivers. Lack of alternative housing options and wait lists for long‐term services and supports means the role of the family caregiver is and will continue be critical. Rising long‐term services and supports costs combined with goals to improve care coordination and access to services are driving more states to change the design of their long‐term services and supports systems to a Medicaid‐Managed Long‐Term Services and Supports (MLTSS) approach. Best practices for implementing MLTSS for individuals with IDD include acknowledging the family caregiver role. The current study's aim is to understand how family caregivers and their roles are recognized in MLTSS for adults with IDD in Kansas. Kansas was selected given their unique approach to MLTSS for adults with IDD, referred to as KanCare. In‐depth semi‐structured telephone interviews were completed with 31 stakeholders in Kansas, including statewide/regional representatives (N = 13), service coordination providers (N = 7), and family caregivers (N = 11). Additional family support services were available in KanCare, but families had difficulty accessing them. No formal processes were reported for assessing the needs of family caregivers in KanCare and families found communications with managed care entities challenging. Families reported difficulties with taking on responsibility of managing in‐home supports and there were concerns about being paid to provide care as a guardian. Family caregivers play a critical role in MLTSS, including assisting with care coordination and access to services. However, their role was not formally acknowledged in KanCare. Future research, practice, and policy efforts should focus on promoting family caregiver assessments and identifying best practices for supporting family caregivers in MLTSS.

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Assessment of informal caregiver's needs by self-administered instruments: A literature review

Background Clinicians, researchers and politicians are seeking to better assess caregiver's needs. Challenges exist in broadly implementing this so as to provide appropriate support. The aim of this review was to compile self-administered instruments for assessment of caregiver's needs that are deemed to be scientifically robust. Methods The Medline database was searched for publications reporting self-administered instruments assessing caregiver's needs with acceptable psychometric properties. These instruments were analyzed in terms of the development context, target population, concept, purpose, structure, content and psychometric properties. The dimensions of the needs were listed and categorized. Results A total of nine self-administered instruments were analyzed. They averaged 32 items, they were specifically developed for a targeted subpopulation of caregivers and dedicated to epidemiological research. Response devices were based on Likert scales. The main dimensions of the needs identified were 'Health and Care', 'Psychological - Emotional Support', 'Information - Knowledge', 'Social Life - Work - Finance'. None was specifically geared toward caregivers for the elderly, children or teenagers. In the absence of transcultural validation, no instrument was directly usable in Europe. Conclusions Assessing caregivers' needs is a key part in providing caregivers with appropriate support. The development of self-administered instruments constitutes a complex field that is still underexplored at the international level; strict specifications with psychometric validation are essential. To be efficient, the instrument should be integrated in a larger process including: upstream, recognition, identification and assessment of the overall situation of the caregiver; and downstream, guidance, establishment and follow-up of a suitable action plan. 

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Dealing with daily challenges in dementia (deal-id study): an experience sampling study to assess caregiver functioning in the flow of daily life

Objective: Accurate assessment of caregiver functioning is of great importance to gain better insight into daily caregiver functioning and to prevent high levels of burden. The experience sampling methodology (ESM) is an innovative approach to assess subjective experiences and behaviour within daily life. In this study, the feasibility of the ESM in spousal caregivers of people with dementia was examined, and the usability of ESM data for clinical and scientific practice was demonstrated. Methods: Thirty-one caregivers collected ESM data for six consecutive days using an electronic ESM device that generated ten random alerts per day. After each alert, short reports of the caregiver's current mood state and context were collected. Feasibility was assessed by examining compliance and subjective experiences with the ESM. Usability was described using group and individual ESM data. Results: Participants on average completed 78.8% of the reports. One participant completed less than 33% of the reports and was excluded from data analyses. Participants considered the ESM device to be a user-friendly device in which they could accurately describe their feelings and experiences. The ESM was not experienced as too burdensome. Zooming in on the ESM data, personalised patterns of mood and contextual factors were revealed. Conclusions: The ESM is a feasible method to assess caregiver functioning. In addition to standard retrospective measurements, it offers new opportunities to gain more insight into the daily lives of people with dementia and their caregivers. It also provides new possibilities to tailor caregiver support interventions to the specific needs of the caregiver.

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Revising social inclusion to take account of care

Social inclusion is a contested concept that identifies the basis for social membership and valued activities in any society. Within social inclusion assessments, care is often overlooked or perceived to be a risk factor for exclusion and a barrier to inclusion. Drawing on ideas from care theories, the authors argue that social inclusion needs revising to take account of care. While the idea of social inclusion can underscore the structures, mechanisms and practices that underpin socially generated care inequalities, revisions are necessary to incorporate insights from care theories and to provide an adequate assessment of carers' social inclusion.

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A discrete choice experiment to explore carer preferences

Purpose: The purpose of this paper is to describe a case study to test the applicability of the discrete choice experiment (DCE) method to assess the preferences of carers of people with dementia. The focus of enquiry was home care provision. Design/methodology/approach: A multi-method approach was adopted for this pilot study. A literature review identified key characteristics of home care for dementia. This informed consultations with lay representatives. Key attributes of home care for the DCE were identified and formed the basis for the schedule. In all, 28 carers were recruited by two voluntary organisations to complete the DCE. A multinomial logistic regression model was used to analyse the data. Findings: Seven attributes of home care for people with dementia were identified from the consultation. The use of the DCE approach permitted the identification of those most important to carers. Despite the modest sample, statistically significant findings were reported in relation to five of the attributes indicating their relevance. A lay involvement in the identification of attributes contributed to the ease of administration of the schedule and relevance of the findings. Originality/value: This study demonstrated the utility of a DCE to capture the preferences of carers of people with dementia and thereby gather information from carers to inform policy, practice and service development. Their involvement in the design of the schedule was critical to this process.

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Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma a Pilot Study

The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.

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Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included 7 men, 7 women, and mean age of 59 years 3 were bereaved 12 were partners 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation (2) availability of palliative care (3) information and communication about illness, prognosis, and death and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

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A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool

Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.

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Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure

Background Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. Aims 1. To identify the factors that contribute to the experience of anguish. 2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Methods Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Results Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes—emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one’s own health—that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Conclusions and implications for practice Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure.

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Helping lay carers of people with advanced cancer and their GPs to talk: an exploration of Australian users' views of a simple carer health checklist

The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting. Convenience samples of 11 carers and 5 GPs were interviewed between September 2010 and December 2011 regarding their experiences with and perceptions of the NAT-C. Open-ended questions were used, and the transcripts were analysed qualitatively to identify themes and patterns. Three major themes were identified: (a) Acceptability of the intervention (b) Impact of the intervention on the GP-patient relationship and (c) Place of the intervention in advanced cancer care. This simple checklist was acceptable to carers, although some were uncertain about the legitimacy of discussing their own needs with their GP. Carer-patients could not be certain whether a GP would be willing or equipped to conduct a NAT-C-based consultation. Such consultations were acceptable to most GPs, although some already used a holistic approach while others preferred brief symptom-based consultations. Although the NAT-C was acceptable to most carers and GPs, supportive consultations take time. This raises organisational issues to be addressed so carers can seek and benefit from their GP's support.

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Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

Objective: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. Method: The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6–8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. Results: A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care.” The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. Significance of Results: The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

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The Carer Support Needs Assessment Tool (CSNAT)

The CSNAT is an evidence-based tool that facilitates tailored support for family members and friends (carers) of adults with long term life-limiting conditions. The research underpinning this tool was informed by carers and practitioners.

It comprises 14 domains (broad areas of need) in which carers commonly say they require support. Carers may use this tool to indicate further support they need both to enable them to care for their family member or friend and to preserve their own health and well-being within their caregiving role.

It is short and simple to use for both carers and practitioners. Online training is also available

The online training can be accessed free of charge and allows health and social care practitioners to access Continuing Professional Development (CPD) accredited training in how to implement The CSNAT Approach, in order to best meet the needs of carers of patients with life-limiting illness. The training also addresses key organisational issues to be considered in planning, piloting and sustaining implementation in the longer term.

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Oncology Nurses' Knowledge, Confidence, and Practice in Addressing Caregiver Strain and Burden

Objectives: To describe nurses' practices, confidence, and knowledge of evidence-based interventions for cancer caregiver strain and burden and to identify factors that contribute to these aspects. ; Sample & Setting: 2,055 Oncology Nursing Society members completed an emailed survey.; Methods & Variables: Pooled analysis of survey results. Variables included the baseline nursing assessment, intervention, confidence, knowledge, strategies used, and barriers encountered. ; Results: Nurses tend to overestimate the strength of evidence for interventions not shown to be effective and have moderate confidence in assessing and intervening with caregivers. Having been an informal caregiver and having received care from an informal caregiver were associated with higher reported practice and confidence. Major strategies used were referral to social workers and others. Barriers reported were financial, caregiver emotional responses, and distance. ; Implications For Nursing: An opportunity exists to increase nurses' knowledge and confidence in assessment and intervention with caregivers. Greater use of technology may help nurses overcome some barriers to working with caregivers. Findings can be used to plan continuing education, develop clinical processes, and identify resources nurses need to address strain and burden among informal caregivers.

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Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach

Background: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. Aim: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. Design: Qualitative. Setting/participants: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. Results: Current barriers to supporting carers at hospital discharge were an organisational focus on patients' needs, what practitioners perceived as carers' often 'unrealistic expectations' of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. Conclusion: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital. 

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State of Caring 2018

A total of 7,397 carers and former carers responded to Carers UK’s annual State of Caring survey between March and May 2018. 

Only responses from the 6,828 people currently providing care who completed the survey are included in this report as it is designed to provide a snapshot of caring in 2018. However, Carers UK will be using the responses of former carers in other pieces of work throughout the year. 

Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. 

Of respondents to the State of Caring Survey 2018 who are currently caring:

  • 75% live in England, 8% live in Northern Ireland, 9% live in Scotland, and 8% live in Wales.
  • 78% identify as female and 20% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0-24, 4% are aged 25-34, 12% are aged 35-44, 30% are aged 45-54, 33% are aged 55-64, 15% are aged 65-74 and 5% are aged 75 and over. As fewer 1% of carers currently providing care who are under 18 took part in the survey, we have not explored results specifically for this group in the report. 
  • 3% are lesbian, gay or bisexual.
  • 12% also have childcare responsibilities for a non-disabled child under 18.
  • 38% are in paid work (49% full-time and 51% part-time).
  • 33% have been caring 15 years or more, 15% for between 10-14 years, 24% for 5-9 years, 25% for 1-4 years and just 3% have been caring for less than one year. 
  • 47% care for 90 or more hours every week, while 16% care for 50-89 hours, 24% for 20-49 hours and 5% care for 1-19 hours a week.
  • Most (75%) care for one person, 19% care for two people, 4% for three people and 2% care for four or more people.
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Experts' perspectives on SwissDRG: Second class care for vulnerable patient groups?

  • Swiss hospital experts are aware of particularly vulnerable patient groups.
  • Vulnerable patient groups are insufficiently represented in the new SwissDRG tariff structure.
  • Swiss hospitals are confronted with the challenges that vulnerable patients pose.
  • Experts report macro, meso, and micro level measures to protect vulnerable patients.
  • Legislative measures to protect vulnerable patients do not show the desired effect.

On the 1st of January 2012, Switzerland introduced the diagnosis-related group hospital tariff structure (SwissDRG). It was recognised that healthcare provided to the most vulnerable patient groups would be a challenge for the new SwissDRG. Coincident with the implementation of SwissDRG, we explored hospital experts' perceptions of which patient groups are vulnerable under the SwissDRG system, what has changed for this group, as well as solutions to ensure adequate access to health care for them.

We interviewed 43 experts from 40 Swiss hospitals. Participating experts named several vulnerable patient groups who share some common characteristics. These hospital experts were concerned about the patient groups that are not financially profitable and questioned the practicability of the current regulation. At the same time, they highlighted the complexity associated with caring for this group under the new SwissDRG and reported measures at the macro, meso, and micro levels to protect vulnerable patient groups from negative effects.

To curb negative outcomes for vulnerable patient groups after the introduction of the SwissDRG, the Swiss legislation has introduced various instruments including the acute and transitional care (ATC) measures. We conclude that ATC measures do not produce the expected effect the legislators had hoped for. More health data is needed to identify situations where vulnerable patient groups are more susceptible to inadequate health care access in Switzerland.

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“You don't look for it”—A study of Swiss professionals’ awareness of young carers and their support needs

While political and public interest in providing support for family carers is growing, so called young carers and young adult carers—young persons under the ages of 18 and 25 respectively—mostly remain unrecognised. Yet, this vulnerable group is in need of special attention and support from professionals in order to get along with the situation of an ill family member and the caring duties they perform. This paper presents the results from a focus group study on the level of awareness among professionals from healthcare, education and social services concerning the topic of caring children, adolescents and young adults; and on the practice tools they consider necessary and helpful in order to support young carers and young adult carers. Twenty‐seven professionals from the German‐ and French‐speaking parts of Switzerland participated in five focus groups. The focus groups were recorded and transcribed verbatim, and the transcripts were analysed using qualitative content analysis. Our findings show that the professionals have a low level of awareness of the issue of young carers and young adult carers and also highlight the professionals’ willingness to engage with the subject. The results also show that professionals consider that practice tools (such as standardised questionnaires and check lists) could be important devices in providing support for young carers and young adult carers. These tools could be helpful in identifying this group, enabling them to identify themselves as such, and would ensure that they received appropriate support. 

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Using the COPE assessment tool with informal carers of people with dementia in New Zealand

AIMS: To evaluate the validity of the COPE index (CI) carer assessment tool within a study exploring perceptions of carer support, health, and wellbeing. To assess the utility and acceptability of the CI with health practitioners and informal carers of people with dementia, following the European COPE protocol.

METHODS: Research interviews (one pre- and two post-CI assessment) recorded demographic characteristics of carer (n = 45) and care recipient, formal (service) and informal support use and satisfaction, self-reported health, the General Health Questionnaire (GHQ-30), Burden Interview, Caregiver Competence, and Personal Gain. COPE Index assessment was undertaken by referring health practitioners (n = 12).

RESULTS: Construct validity of the CI compared positively with findings reported in the literature. Psychological morbidity in carers (33%) was often undiagnosed; 19% of carers presented a more positive perception of their health to the health practitioner than to the researcher; diagnosis of care recipients was not always clear to carers (25%). COPE Index assessment improved both communication and understanding of carers' needs and was evaluated positively by most carers and health practitioners.

CONCLUSIONS: The COPE Index is an easily administered and generally acceptable tool that may be useful for initiating more comprehensive assessment of dementia carers' needs.

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Involving carers in the teaching, learning and assessment of masters students

Involving patients and carers in teaching, learning and assessment focuses the students on person-centred care by providing the opportunity to listen to, and reflect on, the perspective of patient and/or carer and also allows the students the opportunity to work in partnership with them to effect meaningful change. This paper presents an example at Teesside University where two informal carers have been involved as partners in the programme team of The Master of Arts in Advancing Practice over the past four years. In year two of the programme, the student is required to work within their organisation and governance policies to identify, implement and evaluate a practice development change project. Involving carers at critical points throughout the year has enriched, supported and challenged the students' learning. Evaluation has highlighted the role that carers can play in bringing a new dimension to the students' learning experience. The authors believe that direct involvement of this kind has much potential for other programmes in improving health and social care education which, in turn, will improve health and social care services.

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Specialist clinical assessment of vulnerable older people: outcomes for carers from a randomised controlled trial

‘Caring for carers’ is high on the United Kingdom policy agenda for community care. Although recent policy advocates the provision of services directly to the carer, research suggests that an alternative way of helping carers is through targeting enhanced services towards the cared-for person. This paper reports a randomised controlled trial of the effects on carer distress of an additional specialist clinical assessment for vulnerable older people at risk of residential or nursing home placement. The sample was composed of 142 informal carers of older people, randomly assigned to receive either the additional specialist assessment or the usual social services assessment. Carers were assessed using the modified Social Behaviour Assessment Schedule (SBAS), and data were also collected on older peoples' service use throughout the study period. Regression analyses indicated that changes in older peoples' behaviour, as opposed to carer or service-related factors, predicted changes in carer distress, and that the carers of the older people who experienced depressive symptoms received the greatest benefit from the specialist assessment. The study suggests that an effective means of improving outcomes for carers may be to target services towards the distressing behaviours of the person for whom they care, with symptoms of depression being particularly important.

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Carers' assessment and information guidance

It is clear that carers reduce the amount of input that social services and other agencies need to make. It is estimated that there are 185,000 carers in Northern Ireland and that 11 per cent of households here contain a carer. The Act places a requirement on Trusts to inform carers of their right to carer’s assessment and gives Trusts the power to supply services directly to carers to help the carer in their caring role. This change includes a statutory right to a carer’s assessment which allows for an assessment to be carried out even where the person cared for has refused an assessment or the provision of personal social services. The Act also allows Trusts to make Direct Payments.

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Service user and carer assessment of social work students

Whilst the involvement of service users and carers in social work student assessments has significantly changed the education of social work students in the United Kingdom (UK), it is a practice that has not been adopted internationally. The chapter makes the case for service user and carer involvement in students’ assessments at international level. It discusses the policy and the legal context for service user and carer involvement in students’ assessments, and what service users and carers look for when assessing students. It offers some practical suggestions on how institutions could set up service user and carer involvement in students’ assessments.

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Impacts on practitioners of using research-based carer assessment tools: experiences from the UK, Canada and Sweden, with insights from Australia

Researchers and practitioners in several Western countries have recently developed tools for assessing the situation of the carers of adults who are ill, elderly or have disabilities. The present article describes the impact of three such assessment tools, from Canada, the UK and Sweden, on the professional practice of assessors. All tools were tested in agency-based studies. Focus groups, workshops and interviews with assessors were employed to understand the impact on professionals and their practice. An Australian researcher and case manager comments on these experiences from her unique perspective. The results reveal that the use of carer assessments can lead to changes in the appropriateness of intervention by informing practitioners of issues which are given little attention, but which impact on the adequacy of interventions to the service user. Across the projects, most workers found that the tools facilitated a more comprehensive, in-depth and carer-focused assessment. Experience across all the projects suggests that, used sensitively, such tools and approaches can play a key role in transforming the relationship between carers, and the health and social care system. Giving carers a legitimate voice, acknowledging their perspective and expertise, and making them central to assessment processes accords them status both as active partners, and as individuals with their own needs and aspirations, rather than seeing them primarily as resources. As a result of their experiences, many workers and administrators concluded that home-care programmes must change their mandate to include carers among their clients, raising the issue of available monetary and human resources to meet the needs of this group. In addition, as our Australian colleague points out, time, efficiency, relevance, benefit and minimal intrusiveness are important factors for practitioners which influence their use of assessment tools.

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Lung cancer health care needs assessment: patients' and informal carers' responses to a national mail questionnaire survey

The objective of this study was to describe patients' and informal carers' perceptions of care received and services offered following a diagnosis of primary lung cancer. We prepared a prospective, national, mail questionnaire survey of 466 patients with a diagnosis of primary lung cancer and a lay carer of their choice. The setting was 24 randomly chosen hospitals throughout the UK, from a range of urban (n = 11) and rural settings (n = 13). The majority (76%/159) of responders were recipients of care from cancer units. Two hundred and nine patients (45%) with primary lung cancer and 70 (15%) lay carers completed questionnaires. The main results that we found were that key areas of unmet need were most apparent during periods away from acute service sectors, with as few as 40% of patients reporting having received as much help as they needed from community services. The greatest onus of care for patients fell to lay carers, but only 29% of patients identified their lay carers as having needs in relation to their illness. Where patients received all their diagnostic tests in one hospital they were significantly more likely to wait less time between first seeing their general practitioner (GP) and being told their diagnosis (P = 0.0001) than patients who had to attend more than one hospital during their diagnostic work-up period. Fifty per cent of patients reported experiencing some degree of breathlessness even at rest, but only 15% reported having received any advice on living with it. Less than a quarter (23%) of hospital consultants identified anxiety as a key problem for patients with lung cancer, but 66% of patients identified it as such. Hospital staff largely overlook the needs of informal carers, who derive support from a small, mainly community oriented group of professionals, but accessing help is problematic and is dependent on local resources and a need to be proactive.

Our conclusions are that developments in service provision for patients with lung cancer and their informal carers need to focus on six key areas: development of strategies to encourage patients to present earlier to their GP; ongoing evaluation of rapid diagnostic clinics; development and evaluation of a lung cancer care coordinator role; evaluation of innovations in delivery of nursing care in the community; development of local guidelines to facilitate equitable access to palliative care and social services; and evaluation of supportive strategies targeted at lay carers.

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National minimum information standards for all adults in Scotland for assessment, shared care and support plan, review and carers assessment and support: consultation on the compendium of standards

Comments are invited on the National Minimum Standards for Assessment. This compendium sets out the national minimum information standards for all adults, covering Assessment, Shared Care and Support Plans and Review. It also includes national minimum information standards for the identification of needs and support for Carers (‘Carers Assessment’). It builds on and supersedes the National Minimum Information Standards for Single Shared Assessment issued in August 2006 (CCD3/2006). There are two distinct types of standards used throughout the document: information standards which describe the subject matter that must be included without specifying exactly how it should be done or recorded, and data standards which specify the content at a more prescriptive level and include details on format and codes to be used for each of these standards.

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Comprehensive geriatric assessment on an acute medical unit: A qualitative study of older people's and informal carer's perspectives of the care and treatment received

Objective: This qualitative study was imbedded in a randomized controlled trial evaluating the addition of geriatricians to usual care to enable the comprehensive geriatric assessment process with older patients on acute medical units. The qualitative study explored the perspectives of intervention participants on their care and treatment.

Design: A constructivist study incorporating semi-structured interviews that were conducted in patients’ homes within six weeks of discharge from the acute medical unit. These interviews were recorded, transcribed, and analysed using thematic analysis.

Setting: An acute medical unit in the United Kingdom.

Participants: Older patients (n = 18) and their informal carers (n = 6) discharged directly home from an acute medical unit, who had been in the intervention group of the randomized controlled trial

Results: Three core themes were constructed: (1) perceived lack of treatment on the acute medical unit; (2) nebulous grasp of the role of the geriatrician; and (3) on-going health and activities of daily living needs postdischarge. These needs impacted upon the informal carers, who either took over, or helped the patients to complete their activities of daily living. Despite the help received with activities of daily living, a lot of the patients voiced a desire to complete these activities themselves.

Conclusions: The participants perceived they were just monitored and observed on the acute medical unit, rather than receiving active treatment, and spoke of on-going unresolved health and activity of daily living needs following discharge, despite receiving the additional intervention of a geriatrician.

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Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study

Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice.

Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice.

Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach.

Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK.

Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment.

Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.

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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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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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Only connect: client, carers and professional perspectives on community care assessment process

Differences in perspective between clients, carers and practitioners are familiar from the literature. Findings from two research projects are reported here, which identify mismatched perspectives and appear to question the foundations on which community care policy and practice rest. The article discusses features of the policy and practice context that contribute to the likelihood of divergent views about need and appropriate or effective service provision within community care. In concluding with a review of the modernising agenda and the legal mandate, it questions whether a closer alignment between client, carer and professional perspectives can be achieved.

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Carers' assessment, skills and information sharing (CASIS) trial: A qualitative study of the experiential perspective of caregivers and patients

Background: Families express a need for guidance in helping their loved ones with anorexia nervosa (AN). Guided self-help interventions can offer support to caregivers.

Methods: One hundred seventy-eight adult AN patients and their caregivers were recruited from 15 UK treatment centres. Families were randomized to carers' assessment, skills and information sharing (C) intervention + treatment as usual (TAU) or TAU alone. Feedback forms were sent at 6 months post-discharge and, if not returned, at 12 months. One hundred two (57%) patient forms (n = 50TAU; n = 52C) and 115 (65%) caregiver forms (n = 60TAU; n = 55C) were returned. Two researchers coded data blind, using thematic analysis.

Results: (i) Caregivers and patients express a need for post-discharge support. (ii) Patients identify helpful and unhelpful support strategies, useful for developing future interventions. (iii) Patients could identify positive caregiver behaviour changes targeted in intervention. (iv) Guided self-help may benefit caregiver and sufferer, post-discharge.

Conclusion: Caregiver interventions can be a useful tool that will improve the cost effectiveness of inpatient treatment by enhancing the well-being of caregivers and patients. Copyright © 2014 John Wiley & Sons, Ltd and Eating Disorders Association.

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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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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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Social Services and Well-being (Wales) Act: assessment and support for carers

Leaflet outlining local authorities’ duties and functions in relation to the assessment and support of carers under the Social Services and Well-being (Wales) Act. The Act consolidates the law relating to carers and gives them equivalent rights to those of the people that they care for. The leaflet briefly covers the provision of Information, Advice and Assistance services; proportionate assessment; supporting carers through community based preventative services; carer support plans; and what happens if the carer and the person cared for move from one authority area in Wales to another.

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Young carers: assessment and services; literature review of identification, needs assessment and service provision for young carers and their families

The aim of this study was to examine the ways in which young carers come to the attention of voluntary and statutory agencies and to identify the ways young carers needs are assessed. The report sought to identify the approaches that are successful in meeting the social, economic, educational and health needs of young carers and to assess the results of evaluations of the way the services are delivered.

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Carer assessment : continuing tensions and dilemmas for social care practice

Since the early 1990s, UK social care policy has committed to supporting carers. Legislation (England and Wales) over this time period has recognised the importance of separate carer assessments that take into account an individual's ability and willingness to care. This paper considers carer assessment from the perspective of social care practitioners. It reports on qualitative data from a carer research programme that spans over 20 years (1993 to present) and includes 383 in-depth interviews with social care practitioners across England and Wales. Offering unique longitudinal insights, we identify some persistent tensions associated with the translation of UK carer assessment policy into social care practice. We explore practitioners' long-standing ambivalence towards carer assessment and their reluctance to evidence carer need via a separate assessment process. Deficits relating to the conduct of carer assessment are identified. For example, the reliance on structured, problem-focused assessment protocols that restrict discussions to the personal care aspects of caring and fail to capture the complex, diverse lives that carers lead. Carer assessments do not reflect the reciprocal nature of many caring relationships, as a one-way direction of care is assumed. They do not take into account the broader support network of individuals who may be involved in helping someone with complex care needs. Carer willingness to care continues to be taken for granted and planning for the future is a significant gap in carer assessment practice. The proposed changes to the social care systems across England and Wales provide a timely opportunity to review the process and conduct of carer assessment. Policy guidance needs to clarify the links between service user and carer assessments and the way these align within broader assessment and care management frameworks. Assessment tools that encourage a narrative approach to carer assessment and capture the affective aspects of care-giving could benefit future practice.

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Assessing needs from patient, carer and professional perspectives: the Camberwell Assessment of Need for Elderly people in primary care

Background: despite evidence that needs assessment of older people can improve survival and function when linked to effective long‐term management, there is no structured needs assessment tool in widespread use. The Camberwell Assessment of Need for the Elderly is a new tool not previously evaluated in primary care. It includes the views of patients, carers and health professionals, enabling a direct comparison of their perspectives.

Aim: to conduct a feasibility study of Camberwell Assessment of Need for the Elderly in primary care and to compare the needs identified by patients, carers and health professionals.

Methods: we selected a random sample of 1:20 of all people aged 75 and over from four general practices in inner‐city and suburban north‐west London. We interviewed the patients, their informal carers and lead health professionals using the Camberwell Assessment of Need for the Elderly schedule.

Results: 55 (65.5%) of 84 patients, 15 (88.2%) of 17 carers and all of 55 health professionals completed interviews. The patients' three most frequently identified unmet needs were with ‘eyesight/hearing’, ‘psychological distress’ and ‘incontinence’. The carers' three most frequently identified unmet needs were with ‘mobility’, ‘eyesight/hearing’ and ‘accommodation’ and the health professionals' were with ‘daytime activities’, ‘accommodation’ and ‘mobility’. κ tests comparing patient and health professional assessments showed poor or fair agreement with 18 of the 24 variables and moderate or good agreement with six. None showed very good agreement.

Conclusion: the Camberwell Assessment of Need for the Elderly schedule is feasible to use in primary care and can identify perceived needs not previously known about by health professionals. A shorter version of Camberwell Assessment of Need for the Elderly focusing on areas of poor agreement and high levels of need might be useful in the assessment of needs in older people in primary care.

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The Carer Support Needs Assessment Tool (CSNAT) for Use in Palliative and End-of-life Care at Home: A Validation Study

Context. Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice. Objectives. To assess face, content, and criterion validity of the CSNAT and measure sensitivity to change over time. Methods. Participants were 225 adult carers of patients from six U. K. Hospice Home Care services. Carers were surveyed at baseline and at four-week follow-up using self-completed questionnaires, including CSNAT, standard measures (distress, strain, positive appraisals, preparedness, and global health), help provided with activities of daily living, and patients' symptom levels. Qualitative feedback on CSNAT was sought through 10 pilot carer interviews and professional and carer advisory group input. Results. The CSNAT has good face, content, and criterion validity. CSNAT domains comprehensively covered carer support needs. CSNAT scores showed clear and consistent positive correlations with strain and distress and negative correlations with preparedness for caregiving and global health. There also were clear correlations with help with activities of daily living and some relationships with positive appraisals and symptom burden. The CSNAT's sensitivity to change in relevant domains was similar to other measures. Conclusion. The CSNAT is a valid tool for the direct measurement of carers' support needs. It combines comprehensiveness of content with feasibility of administration and has utility both as a research tool and a tool for everyday palliative care practice.

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Literature review of identification, needs assessment and service provision for young carers and their families

The Scottish Executive commissioned this literature review. The overall aim was to provide a comprehensive summary of existing knowledge of how young carers are identified and how their needs are assessed and met. Therefore the review largely concentrated on the interaction between young carers and their families on the one hand and service agencies on the other. Understanding the needs of young carers was an important context for the review, but was not the primary focus. The specific objectives were to: • examine the ways in which young carers come to the attention of voluntary and statutory agencies, and factors inhibiting identification • identify the ways in which young carers’ needs are assessed • examine approaches to service provision by both statutory and voluntary agencies • identify approaches that are successful in meeting the social, educational and health needs of young carers • assess the results of any evaluations of the ways in which services are delivered.

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Carers Assessment of Difficulties Index (CADI): Psychometric properties for use with carers of people with dementia

Burden is a commonly recognised phenomenon in family caring. The Carers Assessment of Difficulties Index (CADI) was developed as a clinical tool for assessing the multiple dimensions of carer burden. It has been used with a number of caring cohorts, but its psychometric properties have not been explored specifically with carers of people with dementia. The 30-item CADI was administered to 232 carers of people with dementia with the aim of assessing the suitability of the frequency scale for clinical and research use with this population. The psychometric properties were examined, including descriptive data, a principal components analysis (PCA), and a reliability analysis on the resultant components. All items were experienced by some participants, but no item was experienced by all. An 8- factor solution from the PCA explained 59% of the variance. Eight subscales were established with good internal consistency. It is concluded that the CADI is suitable for both clinical and research use with carers of people with dementia.

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Carers' Needs and The Carers Act: An evaluation of the process and outcomes of assessment

This report documents the findings of a two year study looking at the impact of the Carers (Recognition and Services) Act 1995 in four local authority social services departments in northern England. The work was funded by the Department of Health under the Outcomes for Social Care initiative. We began the study in November 1997, two years after the full implementation of the Carers Act. The specific research questions the study addressed were: 1. what are the results of national policy in terms of local policy and practice in selected authorities? 2. what are the results of local policy and practice from the carer=s point of view in terms of assessment under the Carers Act, services and outcomes? The study=s findings will help establish the significance of the Carers Act for adult carers, as well as yielding recommendations and good practice points for those staff in local authorities who are responsible for implementation. At the same time, the results are of wider interest, for instance the research can make a contribution in particular to the implementation of the Carers and Disabled Children Bill (currently making its way through parliament), the National Strategy for Carers (DH, 1999a), and any future policy developments on carers= issues. 

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Family carers' experience of the need for admission of their relative with an intellectual disability to an Assessment and Treatment Unit

Background: There is limited research that explores the experiences of family carers of individuals with an intellectual disability requiring admission to a specialist National Health Service Assessment and Treatment Unit. Accordingly, this study aimed to explore family carers’ experience in respect of this phenomenon and their relationships with professionals at this time.

Methods: Interpretative phenomenological analysis was used. Six family carers (three mothers and three fathers) participated and were interviewed via the use of semi-structured interviews.

Findings: Five major themes were developed to represent how carers made sense and gave meaning to their experience. They illustrate how this experience had a significant influence on their sense of value and self-identity. It resulted in higher levels of anxiety, stress and uncertainty about the future of their relative and their identity as a carer. Significantly, professionals are identified as having a pivotal role in influencing how carers come to view their sense of self, identity, value and importance.

Conclusion: The admission of their relative was a time of increased vulnerability for carers in respect of maintaining a sense of self-identity. Engaging with services and professionals had a major influence on situating them within the social structure that makes up the formal system of support. This had a pivotal role in influencing and determining how participants identified with their sense of self.

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Dimensions of choice in the assessment and care management process: The views of older people, carers and care managers

The aim of promoting the maximum possible choice for service users and carers is – together with the goal of greater independence – central to recent community care policies. This paper sets out a typology of those key choices which users and carers are expected to be able to make within each stage of the assessment and care management process: choices about what services, when to receive them (i.e. at what times and for what duration) and from whom (i.e. which provider organization and which individual care worker). Drawing on interviews with 28 older service users, 20 informal carers and 22 care managers across four local authority areas in England, the paper goes on to describe the extent to which such choices – both at the strategic/macro and operation/micro level – have increased or decreased in practice. The evidence confirms that of other recent studies that the gap between the ‘ideal’ of user and carer involvement and the ‘reality’ of everyday practice is still considerable.

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In their own right: translating the policy of carer assessment into practice

Successive legislation has underscored the importance of assessments that are sensitive to the needs of carers and take into account their ability and willingness to continue caring. This paper synthesizes qualitative and quantitative findings from a continuing programme of carer-related research that began in 1993 and has continued in parallel with legislative changes. It considers the process and characteristics of carer assessment from the perspectives of carers for individuals with a range of health and social care needs, and practitioners. This paper explores the assessment of carer need over time and highlights the considerable and enduring gap between policy and practice. It considers practitioners’ reluctance to offer separate carer assessments, identifies confusion relating to the interpretation of eligibility criteria and documents the limited contribution of health service staff. The need for an evidence-based framework for good practice, that distinguishes between carer needs, service provision and carer outcomes, is highlighted. The paper concludes by identifying key changes that are necessary to promote future good practice, such as staff training and information strategies and the need for practitioners to engage with carers as partners in the care process.

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‘Not another form!’ Lessons for implementing carer assessment in health and social service agencies

This article addresses some of the issues that need to be considered in implementing carer assessment in health and social service agencies. It is based on findings from three studies involving the use of the CARE (Caregivers’ Aspirations Realities and Expectations) Assessment Tool in Canada, a comprehensive psychosocial instrument. The first study, carried out between 1999 and 2001, was aimed at developing the CARE Tool, and had as one of its objectives to evaluate the feasibility of its implementation into ongoing practice. The second study, conducted between 2000 and 2003, was designed to evaluate the impact of using the CARE Tool, and also had an objective concerning implementation. A third study was undertaken in 2005–2006, in part, to gain more understanding of the barriers and outcomes of implementing carer assessment. All three studies used focus groups and individual interviews as the main data collection method. In all, this article is based on 13 focus groups and five individual interviews with home care professionals and 19 individual interviews with home care managers or supervisory staff, all having experience with carer assessment. Similar themes emerged from the thematic analyses of the data from all three projects. All studies point to the following as preconditions to successful implementation: clarification of carer status within policy and practice; making explicit agency philosophy with regard to the role and responsibilities of families in care and conceptions of carer assessment; and agency buy-in at all levels. Four themes emerged as issues for implementation: integration of the carer assessment tool with existing tools; ensuring training and ongoing supervision; work organisation and resources required for carer assessment; and logistical questions. It would appear essential that a clear rationale for moving towards carer assessment and its place in a global approach to long-term care and carers are essential to its implementation.

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Young carers’ health helped by tailored assessment plan

A PIONEERING NURSE is at the forefront of a programme to help improve the physical and mental health of young carers. The article focuses on Laura Ulyatt, a young carers' health nurse in Oxfordshire, England.

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Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers

Background  Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.

Method  Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited.

Results  Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported.

Conclusion  The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.

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Carers support and assessments

The article focuses on the important role played by carers in the society in Great Britain. Carers allow the people that they look after to stay in the community making it vital for them to be supported continuously. The Carers (Equal Opportunities) Act of 2004 was introduced to ensure that carers are determined, educated about their rights and informed that public agencies support their initiatives. It stresses the need to develop carers' lack of self-confidence and self-esteem to avoid disadvantages in other endeavors.

Getting it right: assessments for black and minority ethnic carers and service users

The aim of this multimedia learning resource is to provide a broad introduction to the issues affecting minority ethnic carers and service users with an emphasis on achieving cultural competence within individual practice.

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Mental health care co-ordinators' perspectives on carers' assessments

In the UK, there are around 1.5 million carers of people with mental health problems providing substantial amounts of free care. Despite having a legal right to a ‘carer's assessment’, only a minority of mental health carers have had such an assessment. To try and understand why the uptake is so low, we undertook a small (n = 8) qualitative study exploring what mental health staff acting as ‘care co‐ordinators’ thought the barriers to, and facilitators of, carers' assessments might be, and how subsequent practice might be improved.We found that there was some confusion over the definition of ‘carer’ and over who should take responsibility for carer assessments. The main barriers to carers' assessments were the documentation used, the attitudes of staff (especially managers) and the fact that the needs of mental health carers often differed from those caring for people with a physical disability. Practice could be improved through: clarifying the definition of ‘carer’; education and training; redesigning the documentation; dovetailing service user and carer needs assessments; and through offering a wider choice of evidence‐based services as assessment outcomes. Improvements are unlikely to be successful, however, without the active support, expertise and engagement of carers.

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Cuts and lack of assessments leave carers 'at breaking point'

Mencap finds no let up in stress for carers of people with learning disabilities as councils fail to assess their needs and make inadequate provision of short breaks. [Journal abstract]

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Understanding why carers' assessments do not always take place

Recent pronouncements from both government and carers' organisations have expressed disappointment at the low numbers of carers' assessments being undertaken by social care practitioners. The reasons offered for this are varied. They commonly tend to emphasise issues of bureaucratic incompetence, for example the failure by Social Services Departments to provide information to carers about their rights, or else highlighting practitioner attitudes that are out of step with current thinking, for example wanting to retain decision-making power and not involving carers. Scarcity of resources is a theme that permeates most explanations. While these explanations certainly have some validity, this paper argues that for many practitioners, the very nature of the relationship with carers is a problematic one, containing several interrelated areas of confusion, ambiguity and tension that often go unacknowledged—particularly by policy makers, politicians and senior managers whose ideas about carers are often based on idealisations of what a carer is. Carers have become reified. This paper discusses some of the major concerns and argues that the tensions, ambiguities and confusion experienced help explain the less than full engagement by some practitioners with the carers' agenda as promoted by carers' organisations and government policy.

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Carers of older people with dementia: assessment and the Carers Act

The Carers (Recognition and Services) Act 1995 came into force on 1 April 1996. It entitles carers who are providing substantial amounts of care on a regular basis to an assessment of their needs and ability to care. Local authorities are required to take the results of this assessment into account when making decisions about services. This paper reports the key findings of a two-year study, conducted in Wales, that evaluated the process and outcomes of assessments carried out under the auspices of the Carers Act. The findings offer insights to policy makers and practitioners and profile how care managers assess carers’ needs. In addition, the paper describes carers’ qualitative experiences of the assessment process and the difficulties care managers encounter in translating into practice the policy emphasis on supporting carers. It is suggested that separate carer assessments are not an established feature of care management practice and that care managers lack an explicit framework to direct the assessment of carers’ needs.

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A practitioner's guide to carers' assessments under the Carers and Disabled Children Act 2000

A carers' assessment under the Carers and Disabled Children Act 2000 is carried out at the request of the carer in order: to determine whether the carer is eligible for support; to determine the support needs of the carer (ie what will help the carer in their caring role; and help them to maintain their own health and well -being). To see if those needs can be met by social or other services Carers have a right to an assessment of their needs even where the person cared for has refused an assessment for, or the provision of community care services, provided the person cared for would be eligible for community care services.

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Assessment and support for South Asian carers

This small study, funded by the Sir Halley Stewart Trust, was designed to test out the effectiveness with Asian carers and value of newly translated versions (Gujarati and Urdu) of instruments previously used mainly with white English carers: Carers’ Assessment of Difficulties Index (CADI) and Carers’ Assessment of Satisfactions Index (CASI). It also aimed to use these measures to gain an improved understanding of how Asian carers perceived the difficulties and satisfactions of caring. The key findings were:

  • The majority of the 26 carers interviewed found CADI/CASI to be intelligible and relevant. They did not identify any major areas not covered by original versions. First language versions were generally acceptable, although most chose also to refer to the English form. Most carers described the process of completing CADI/CASI as helpful in terms of improved understanding and affirmation of their caring role.
  • Carers identified the main sources of stress of caring as relating to taking a break, time for family and friends, and the degree of personal care they needed to provide.
  • Carers highlighted sources of satisfaction of caring that mainly related to their sense of family duty and religious faith, personal growth and development, the person cared for reaching their full potential, and being brought closer together by caring.
  • Carers valued and tended to prefer support from the familiar, for example Asian workers and support groups. Yet it was also important to be able to respect and rely on a worker who was supportive and available regardless of ethnicity.
  • Only three of the carers were certain they had received a formal assessment of their carer needs, although ten others were confident they had been subject to some form of wider care assessment. Most of this group of carers were aware that a right to assessment existed.
  • Six of these households had not received any formal care support beyond contact with social workers. The carers who had received help were positive about the support, with some saying they would have liked more help. A few complained about not receiving support even when their circumstances were known to services.
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Carers and confidentiality in mental health care: considering the role of the carer's assessment: a study of service users', carers' and practitioners' views

Relatives or carers of people with mental health problems have criticised professionals for their failures to share information with them. This article reports on a multiple method study comprising a policy search, a survey of service users, carers and professionals, and stakeholder interviews and group events. The study found new policies that addressed the principles underpinning information sharing with carers. However, examples of good practice in professional involvement of carers that took account of carer rights and responsibilities emerged from the research. This suggests the relevance of the carer's assessment, a carer's right to an assessment of his or her circumstances and wishes in assisting understanding of the care context and enhancing appropriate information sharing between professionals and carers. 

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Asian carers' perceptions of care assessment and support in the community

Within a study of the use of carer assessment forms, Asian carers were given the opportunity to describe and comment on their perceptions and experiences of community care assessment and support. Although their confidence in community care workers was not exclusively related to ethnicity, they relied a great deal on semi-informal contacts with minority ethnic workers through their own local communities. The concept of ‘friendship’ with professionals was important to many Asian carers. In common with the findings of other carer studies, many Asian carers were uncertain about their experience of formal assessment and unclear about their entitlements and availability of community care support. ‘Outreach’ contact and ‘befriending’ support was greatly appreciated. Day-care and sitting support were seen as a priority for formal services. Apart from contact with general practitioners, there was limited awareness or experience of community health-care support. Most of these Asian carers were involved with carer support groups. They spoke of the benefits in terms of social interaction and mutual support, counteracting feelings of isolation, and access to information and formal support.

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Who cares wins? Carers' experiences of assessment since the introduction of the Carers (Equal Opportunities) Act 2004

This paper examines the views of carers who have received a carer’s assessment following the introduction of the Carers (Equal Opportunities) Act 2004. The Act ensured for the first time that a carer’s desire to take part in paid work, education or training, and leisure opportunities was considered. Semi-structured interviews were undertaken with carers to illuminate their lived experiences. Six themes emerged from data analysis: finding out about entitlement to an assessment; gaining recognition as a carer; partnership working with service professionals; carers’ awareness of support availability; desired outcomes; carers’ unmet needs in relation to education, work and leisure. Some carers were knowledgeable about the support that was available to them and others were quite unaware. This affected their ability to access help in order to cope with their roles. Carers welcomed the opportunity to discuss their individual needs and wanted to be treated in a holistic way by practitioners. The complexities around partnership working with care organisations permeated several of these themes and thus carers’ experiences may be defined as a ‘wicked issue’ requiring creative responses to the issues that concerned them. Solutions offered should be tailor-made and not delivered from a menu of ‘what is available’. 

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