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Abstract:Introduction: Informal caregiving can lead to burnout. The relationship between burnout and negative states has been the subject of extensive research. This study analyzes the mediation role of a positive psychological variable – the quality of the carer-patient relationship – between psychological distress and informal carers' burnout. Methods: We recruited Portuguese informal carers of adult cancer patients online (N = 92) to answer the Quality of Carer-Patient Relationship Scale gauging relationship quality, the Depression, Anxiety, and Stress Scales assessing psychological distress, and the Maslach Burnout Interview-Human Services Survey evaluating the dimensions of burnout, depersonalization, emotional exhaustion, and reduced personal accomplishment. The cross-sectional data were analyzed through descriptive statistics, correlations, multiple regressions, and simple mediation analysis. Results: Our results show that psychological distress variables directly affect burnout dimensions, and that relationship quality has a significant indirect effect on each burnout dimension, suggesting that relationship quality partially mediates the association between each distress dimension – depression, anxiety, and stress – and each of the burnout components – depersonalization, emotional exhaustion, and personal accomplishment. Discussion/Conclusion: This study underscores the importance of intervening in informal caregiver mental health and patient-caregiver relationships and encourages further investigation into the dynamics of the studied variables. [ABSTRACT FROM AUTHOR]

Abstract: Introduction: Informal caregiving can lead to burnout. The relationship between burnout and negative states has been the subject of extensive research. This study analyzes the mediation role of a positive psychological variable – the quality of the carer-patient relationship – between psychological distress and informal carers’ burnout. Methods: We recruited Portuguese informal carers of adult cancer patients online (N = 92) to answer the Quality of Carer-Patient Relationship Scale gauging relationship quality, the Depression, Anxiety, and Stress Scales assessing psychological distress, and the Maslach Burnout Interview-Human Services Survey evaluating the dimensions of burnout, depersonalization, emotional exhaustion, and reduced personal accomplishment. The cross-sectional data were analyzed through descriptive statistics, correlations, multiple regressions, and simple mediation analysis. Results: Our results show that psychological distress variables directly affect burnout dimensions, and that relationship quality has a significant indirect effect on each burnout dimension, suggesting that relationship quality partially mediates the association between each distress dimension – depression, anxiety, and stress – and each of the burnout components – depersonalization, emotional exhaustion, and personal accomplishment. Discussion/Conclusion: This study underscores the importance of intervening in informal caregiver mental health and patient-caregiver relationships and encourages further investigation into the dynamics of the studied variables.

Abstract Background Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person’s location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients’ and informal carers’ participation in and experience of the lung cancer care pathway. Methods A qualitative cross-sectional interview study with people diagnosed with lung cancer

Background: Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person's location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients' and informal carers' participation in and experience of the lung cancer care pathway. Methods: A qualitative cross-sectional interview study with people diagnosed with lung cancer < 6 months before recruitment (in receipt of surgery, radical radiotherapy, or living with advanced disease) and their informal carers. Participants will be recruited purposively from Barts Health NHS Trust and United Lincolnshire Hospitals NHS Trusts to ensure a diverse sample across urban and rural settings. Semi-structured interviews will explore factors affecting individuals' capability, opportunity, and motivation to engage with their recommended diagnostic and treatment pathway. A framework approach, informed by the COM-B model, will be used to thematically analyse facilitators and barriers to patient engagement. Discussion: The study aligns with the current policy priority to ensure that people with cancer, no matter where they live, can access the best quality treatments and care. The evidence generated will be used to ensure that lung cancer services are developed to meet the needs of rural, coastal, and urban communities. The findings will inform the development of an intervention to support patient engagement with their recommended lung cancer pathway. Protocol registration: The study received NHS Research Ethics Committee (Ref: 23/SC/0255) and NHS Health Research Authority (IRAS ID 328531) approval on 04/08/2023. The study was prospectively registered on Open Science Framework (16/10/2023; https://osf.io/njq48). [ABSTRACT FROM AUTHOR]

Objectives Existing evidence from high-income countries suggests that policies aimed at enhancing access to formal care can reduce the burden on informal carers and facilitate their reentry into the labor market. However, there is limited evidence regarding the specific carers who have been most affected by such insurance. This study focuses on China's long-term care insurance (LTCI) and examines its effects on informal care burden and the labor market participation of different types of informal carers. Methods Drawing data from the China Health and Retirement Longitudinal Study of 2011, 2013, 2015, and 2018, we employ a staggered difference-in-differences (DID) model with propensity score matching to analyze the impact of LTCI. To explore time-varying DID estimates, we adopted the DID event study design. Results Our study demonstrates that LTCI substantially alleviates the burden on informal carers while markedly boosting labor market participation. Notably, we found a more pronounced decrease in care burden among spouses, amounting to a reduction of 8.5 hr per month. Concurrently, LTCI's impact on enhancing labor market participation was more significant among younger household members, reflected in an average income increase of 4,534 yuan per year. Furthermore, subgroup analysis highlights that LTCI primarily benefits informal carers providing care for older people with low income or those who were farmers or previously engaged in informal sectors. Discussion Our study demonstrates that LTCI has led to a reduction in care burdens and an enhancement in labor market participation. The impact is especially pronounced for informal carers of older people with low income or those with backgrounds in farming or informal work sectors. [ABSTRACT FROM AUTHOR]

Objective: Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available. Methods: Data from 4228 family members/partners of patients recruited to an online cross-sectional study through 58 UK-based patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample. Results: The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance). Conclusions: The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available. [ABSTRACT FROM AUTHOR]

Background and Objectives Communication partner training (CPT) is essential in dementia care. Despite families being the largest group of community carers, previous reviews primarily focused on formal carers. This study aimed to understand the characteristics and effectiveness of CPT for families of people with dementia. Research Design and Methods The systematic review included intervention/protocol studies on dementia CPT for families, excluding formal carers and programs not focused on communication. CINAHL, PsycINFO, SpeechBITE, Medline, SCOPUS, and Embase were searched between November 30 and December 6, 2021. After deduplication, 3,172 records were screened. Quality assessment used JBI Critical Appraisal tools and the Mixed Methods Appraisal Tool. Data synthesis utilized three reporting tools, the International Classification of Functioning, Disability, and Health, and content analysis. Results Of 30 studies (27 programs), there were 10 quasi-experimental, 5 RCTs, 4 mixed methods, 4 case studies, 4 qualitative, and 2 protocols. Studies were published between 1998 and 2021 and included 671 family members. Characteristics varied with 7/27 programs including consumers during creation and one program including telehealth. One study included all reporting tool criteria. Programs typically used 4 intervention functions, with 12/27 programs addressing 3 behavior change areas. 33/74 outcome measures targeted the "Environment" of the person with dementia. Studies showed positive improvements in communication skills and knowledge, with mixed results on behavior/psychosocial outcomes. Qualitative results identified improvements in conversation and attitudes. Discussion and Implications CPT for families improves communication outcomes, however, quality of studies varied significantly. Future research should address gaps in telehealth, consumer involvement, and intervention descriptions. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers are an essential health resource in the care of persons with severe mental disorders, particularly in South Africa where access to mental healthcare services is limited. Aim: The study aimed to explore and describe the coping strategies used by informal caregivers and the specific health impacts they face in the context of severe mental disorders in South Africa. Setting: The study was conducted in Bushbuckridge municipality situated in the northeastern parts of Mpumalanga province, South Africa. Methods: A descriptive qualitative methodology was used to conduct semi-structured interviews with 12 purposefully selected participants. Audio-recorded interviews were translated, transcribed and analysed inductively on NVivo12 using reflexive thematic analysis. Results: The themes identified were caregivers’ experience of consequences of caregiving and caregivers’ experience of coping with their caregiving role. Participants experienced negative consequences on their emotional, mental and physical health. The participants use internal and external resources to cope with the challenges they face, and many highlighted using emotion-focused coping strategies. Conclusion: The findings revealed an urgent need to develop support strategies to strengthen informal caregivers’ coping and promote good health particularly in rural South Africa where informal caregivers play a crucial role in the management of severe mental disorders. Contribution: The finding demands that policymakers and healthcare providers prioritise the health and well-being of the informal caregivers. There should be policies targeted specifically at developing and implementing caregiver-orientated healthcare services.

Purpose: Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway. Methods: Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected. Results: Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on 'time to yourself'. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach's α = 0.95), and a general construct (single factor loadings 0.43–0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive. Conclusion: LTCQ-Carer is a valid new measure for assessing family caregivers' quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway. [ABSTRACT FROM AUTHOR]

Copyright of Social Work. Experience & Methods / Socialinis Darbas: Patirtis ir Metodai is the property of Vytautas Magnus University, Faculty of Social Sciences and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

This series will explore the definition, meaning and roles of informal caring and informal carers, statistics and lived experiences regarding informal caring, the law and Government strategies regarding informal caring and the role of the nurse, nursing associate and healthcare assistant in supporting the informal carer. This first article will establish the purpose behind this series, what the series will cover and the definition and meaning of informal caring and the informal carer. [ABSTRACT FROM AUTHOR]

Abstract Introduction Inclusion of informal carers in transitional care is challenging because of fast throughput and service fragmentation. This study aimed to understand informal carers' needs during the care transitions of older adults from inpatient care to the community. Methods A qualitative exploratory design was used with mixed‐methods data collection. Seventeen semi‐structured telephone interviews were conducted with family carers; one focus group was conducted by videoconference with two family carers and three community‐based advocacy and aged care providers; and eight semi‐structured telephone interviews were undertaken with healthcare practitioners from rehabilitation services. Data were thematically analysed. Findings All carers described the main social challenge that they needed to address in transitional care as ‘Needing to sustain family’. Carers reported their social needs across five solutions: ‘Partnering with carers’, ‘Advocating for discharge’, ‘Accessing streamlined multidisciplinary care’, ‘Knowing how to care’ and ‘Accessing follow‐up care in the community’. Focus group participants endorsed the findings from the carer interviews and added the theme ‘Putting responsibility back onto carers’. All healthcare practitioners described the main social challenge that they needed to address as ‘Needing to engage carers’. They reported their social solutions in three themes: ‘Communicating with carers’, ‘Planning with carers’ and ‘Educating carers’. Discussion Findings highlight the importance of reconstructing the meaning of transitional care and relevant outcomes to be inclusive of carers' experiences and their focus on sustaining family. Transitional care that includes carers should commence at the time of hospital admission of the older adult. Conclusions Future sustainable and high‐quality health services for older adults will require transitional care that includes carers and older adults and efficient use of inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated. Public Contribution This study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community‐based organizations providing care and advocacy support to informal carers.

Introduction: Inclusion of informal carers in transitional care is challenging because of fast throughput and service fragmentation. This study aimed to understand informal carers' needs during the care transitions of older adults from inpatient care to the community. Methods: A qualitative exploratory design was used with mixed‐methods data collection. Seventeen semi‐structured telephone interviews were conducted with family carers; one focus group was conducted by videoconference with two family carers and three community‐based advocacy and aged care providers; and eight semi‐structured telephone interviews were undertaken with healthcare practitioners from rehabilitation services. Data were thematically analysed. Findings: All carers described the main social challenge that they needed to address in transitional care as 'Needing to sustain family'. Carers reported their social needs across five solutions: 'Partnering with carers', 'Advocating for discharge', 'Accessing streamlined multidisciplinary care', 'Knowing how to care' and 'Accessing follow‐up care in the community'. Focus group participants endorsed the findings from the carer interviews and added the theme 'Putting responsibility back onto carers'. All healthcare practitioners described the main social challenge that they needed to address as 'Needing to engage carers'. They reported their social solutions in three themes: 'Communicating with carers', 'Planning with carers' and 'Educating carers'. Discussion: Findings highlight the importance of reconstructing the meaning of transitional care and relevant outcomes to be inclusive of carers' experiences and their focus on sustaining family. Transitional care that includes carers should commence at the time of hospital admission of the older adult. Conclusions: Future sustainable and high‐quality health services for older adults will require transitional care that includes carers and older adults and efficient use of inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated. Public Contribution: This study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community‐based organizations providing care and advocacy support to informal carers. [ABSTRACT FROM AUTHOR]

Objective: To review quality of life (QOL) instruments for chronic limb-threatening ischemia (CLTI) patients and informal carers, and their use in QOL and cost-utility analysis (CUA) studies. Background: CLTI is a global health problem with significant morbidity affecting patients and informal carers. QOL is increasingly measured for holistic outcomes assessment and CUA. However, measurement instruments in CLTI are poorly understood. Methods: MEDLINE, EMBASE, PsycINFO, CINAHL, COSMIN, PROQOLID, CEA registry, and NHS EED databases were searched for all English language studies up to May 2021. Features of instruments, evidence of measurement property appraisal, and trends in use were assessed. Prospective protocol registration (Open Science Framework: https://doi.org/10.17605/OSF.IO/KNG9U). Results: A total of 146 studies on QOL instruments (n=43), QOL outcomes (n=97), and CUA (n=9) were included. Four disease-specific QOL instruments are available for lower extremity arterial disease (intermittent claudication or CLTI). VascuQoL-25 and VascuQoL-6 have been used in CLTI. There is no CLTI-specific instrument. Of 14 generic instruments, SF-36, EQ-5D-3L, NHP, and WHOQOL-BREF were most common. Studies reporting partial measurement property appraisal favored VascuQoL-25, VascuQoL-6, and SF-36. Feasibility considerations include mode of administration and responder burden. None of 4 available carer-specific instruments have been used in CLTI. Since 1992, the number of QOL studies has increased considerably, but CUA studies are scarce. Informal carers have not been assessed. Conclusions: This review provides a comprehensive reference for QOL measurement in CLTI that helps end-users with instrument selection, use, and interpretation. However, a CLTI-specific instrument is needed. There is an opportunity to benefit society through future CUA studies and evaluation of QOL in informal carers. [ABSTRACT FROM AUTHOR]

Abstract Background Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. Aim This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. Design Between October 2018 and March 2020, we conducted 11 in‐depth semi‐structured interviews across 6 adult caring dyads, interviewing each individual separately. Setting Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. Variable Being Studied Participants were asked about the impacts of illness and caring on daily life. Data Analysis Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. Results Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. Discussion and Conclusions This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. Patient/Public Involvement In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer.

Abstract Background Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.

There has been much growth in the interest in and use of family-level and dyadic level theories and methodologies to explore the influence of social relationships on health and the influence of health on social relationships. Social relationships include those with romantic partners, friends, siblings, children and care professionals these individuals play a significant role in the physical health, mental health and well-being of a patient. An important part of this includes medicines optimisation and illness management. Studying health and well-being and consideration of both partners in the context of these close social relationships is clearly important in health research; as such both partners become the unit of study - also known as a dyad. The aim of this paper is to provide an introduction and overview as to how dyads might be used in medicines optimisation and illness management research. This aim will be achieved through the following objectives: dyadic study designs used in health research; some of the challenges that can occur in recruitment and data collection and strategies that can be used to overcome them; dyadic data analysis: some methodological and substantive considerations that require consideration when using dyadic data analysis. [ABSTRACT FROM AUTHOR]

Background: Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. Aim: This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. Design: Between October 2018 and March 2020, we conducted 11 in‐depth semi‐structured interviews across 6 adult caring dyads, interviewing each individual separately. Setting: Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. Variable Being Studied: Participants were asked about the impacts of illness and caring on daily life. Data Analysis: Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. Results: Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. Discussion and Conclusions: This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. Patient/Public Involvement: In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer. [ABSTRACT FROM AUTHOR]

Copyright of KONTAKT - Journal of Nursing & Social Sciences related to Health & Illness is the property of University of South Bohemia in Ceske Budejovice, Faculty of Health & Social Sciences and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Abstract Background Dementia is one of the greatest health and care priorities globally. Caring for persons with dementia is a challenge and often leads to negative psychological, physiological and financial consequences for informal carers (family members or friends). Many informal carers experience moderate to severe levels of burden. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology (AT) devices such as electronic medication dispensers, robotic devices and motion detectors. However, little is known about informal carers’ experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use AT. Method MEDLINE, Embase, CINAHL, AMED, ALOIS, PsycINFO, Trial registries and OpenGrey databases will be searched for studies of any design that have investigated carer experience and/or outcomes of AT use for persons with dementia living at home. Manual searches from reference lists of relevant papers will also be undertaken. Outcomes of interest are carers’ self-reported outcomes (which include perceived burden, quality of life and wellbeing) and carer experiences (such as usefulness, benefits and disadvantages of AT and impact on caregiver/care receiver relationship). Two independent reviewers will screen identified papers with pre-defined eligibility criteria and extract data using a bespoke extraction form. Discrepancies will be resolved in discussion with a third reviewer. A synthesis of eligible studies and summary will be provided. Discussion A systematic review of quantitative, qualitative and mixed methods evidence of informal carers’ experience of AT use in dementia in the community will be carried out. It is anticipated that this will highlight (1) investigations on impact of AT use on carers, (2) outcome measures and experience questionnaires that have been used and (3) the types of studies carried out so far on this topic. The results from the review will be presented in a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care and also identify AT that is not usually available through government or health system funding. Systematic review registration PROSPERO CRD42017082268.

Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD.Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model. [ABSTRACT FROM AUTHOR]

Abstract Background People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

Introduction: To assess the quality of life conditions for informal carers of palliative patients. Material and methods: The study included 150 caregivers of patients under palliative treatment. The research was conducted at the Good Samaritan Hospice in Lublin and in the home hospice. The research tool was the Questionnaire for Assessing the Quality of Life of Carers of Cancer Patients (CQOL-C) and the Patient Health Questionnaire (TEST PHQ-9) used to assess the occurrence of depression symptoms. The author's self-administered questionnaire containing sociodemographic data was also used. Results: The vast majority of the respondents were women 61.33%. The average age of the carers was 51.3 ± 12.0 and the average quality of life 63.17. In the domain of the economic situation it was 4.29, in the domain of psychosomatic functioning 28.41, in the domain of adaptation to illness of a family member 30.47. The average level of depression among the respondents based on the PHQ-9 test was 7.59 ± 5.43. Study has shown that 38% of carers were depressed, 27.33% had mild depression, 22.67% had moderate depression, 9.33% had moderate depression, and 2.67% had severe depression degree. Conclusions: The quality of life of carers of palliative patients is low. The risk of depression among caregivers of palliative patients is high. The higher the level of the depression, the worse the quality of life in general and in all its domains. The lower level of the quality of life concerned more often men, carers between 46-59 years of age, people with higher education, carers who are distant families and professionally active people. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving. [ABSTRACT FROM AUTHOR]

Abstract Background Although proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown. We aimed to compare health-related knowledge (generic and COPD-related knowledge) between patients with COPD and their resident proxies. Methods In this cross-sectional study, we included stable patients with moderate to very severe COPD and their resident proxies (n = 194 couples). Thirty-four statements about generic health and COPD-related topics were assessed in patients and proxies separately. Statements could be answered by ‘true’, ‘false’, or ‘do not know’. This study is approved by the Medical Research Ethics Committees United (MEC-U), the Netherlands (NL42721.060.12/M12–1280). Results Patients answered on average 17% of the statements incorrect, and 19% with ‘do not know’. The same figure (19%) for the incorrect and unknown statements was shown by proxies. Patients who attended pulmonary rehabilitation previously answered more statements correct (about three) compared to patients who did not attend pulmonary rehabilitation. More correct answers were reported by: younger patients, patients with a higher level of education, patients who previously participated in pulmonary rehabilitation, patients with better cognitive functioning, and patients with a COPD diagnosis longer ago. Conclusions Proxies of patients with COPD as well as patients themselves answer about two third of 34 knowledge statements about COPD correct. So, both patients and proxies seem to have an incomplete knowledge about COPD and general health. Therefore, education about general health and COPD should be offered to all subgroups of patients with COPD and their proxies. Trial registration This study is registered in the Dutch Trial Register ( NTR3941 ). Registered 19 April 2013.