Informal Carers Of Older People Research Articles

Examining the Impact of Long-Term Care Insurance on the Care Burden and Labor Market Participation of Informal Carers: A Quasi-Experimental Study in China.

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. 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. 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 8.5hr 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. 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.

The experience of working informal carers of older people: a qualitative diary study

This article expands understanding of the experiences of working carers by analysing their care activities and applying cognitive appraisal theory to explore how different resources affect carers’ appraisal processes. A total of 18 carers from the UK and Hong Kong took part in a qualitative daily diary study. The contributions of the article include providing a broader conceptualisation of care activities and considering the implications of cognitive appraisals and resources in the experience of combining work and care. The findings provide insights into future research design and support development.

Uptake and Use of Care Companion, a Web-Based Information Resource for Supporting Informal Carers of Older People: Mixed Methods Study.

Informal carers play a major role in supporting relatives and friends who are sick, disabled, or frail. Access to information, guidance, and support that are relevant to the lives and circumstances of carers is critical to carers feeling supported in their role. When unmet, this need is known to adversely affect carer resilience and well-being. To address this problem, Care Companion was co-designed with current and former carers and stakeholders as a free-to-use, web-based resource to provide access to a broad range of tailored information, including links to local and national resources. This study aimed to investigate the real-world uptake and use of Care Companion in 1 region of England (with known carer population of approximately 100,000), with local health, community, and social care teams being asked to actively promote its use. The study had a convergent parallel, mixed methods design and drew on the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework. Data included metrics from carers' use of Care Companion, surveys completed by users recruited through general practice, and interviews with carers and health and social care providers regarding their views about Care Companion and their response to it. Quantitative data were analyzed using descriptive statistics. Interview data were analyzed thematically and synthesized to create overarching themes. The qualitative findings were used for in-depth exploration and interpretation of quantitative results. Despite awareness-raising activities by relevant health, social care, and community organizations, there was limited uptake with only 556 carers (0.87% of the known carer population of 100,000) registering to use Care Companion in total, with median of 2 (mean 7.2; mode 2) visits per registered user. Interviews with carers (n=29) and stakeholders (n=12) identified 7 key themes that influenced registration, use, and perceived value: stakeholders' signposting of carers to Care Companion, expectations about Care Companion, activity levels and conflicting priorities, experience of using Care Companion, relevance to personal circumstances, social isolation and networks, and experience with digital technology. Although many interviewed carers felt that it was potentially useful, few considered it as being of direct relevance to their own circumstances. For some, concerns about social isolation and lack of hands-on support were more pressing issues than the need for information. The gap between the enthusiastic views expressed by carers during Care Companion's co-design and the subsequent low level of uptake and user experience observed in this evaluation suggests that the co-design process may have lacked a sufficiently diverse set of viewpoints. Numerous factors were identified as contributing to Care Companion's level of use, some of which might have been anticipated during its co-design. More emphasis on the development and implementation, including continuing co-design support after deployment, may have supported increased use.

Examining gait aid use and user safety by older people with dementia: Perspectives of informal carers to inform practice

PurposeTo determine gait aid use and decision-making related to usage in people with dementia, and examine factors influencing (1) gait aid use or not; and (2) falls in past year.Materials and methodsA survey of informal carers of older people with dementia in the community. Closed questions on gait aid use, falls, timing and sources of gait aid acquisition, and advice received to support use were used. Chi-squared tests (Fisher’s Exact) compared: (1) gait aid users vs non-users and carers’ report of (i) unsteadiness in walking/turning, (ii) dementia severity, (iii) falls in past year, and (2) fallers vs non-fallers and (i) timing of gait aid commencement relative to dementia diagnosis, (ii) whether health professional advice was received regarding use, and iii) regularity of use.ResultsForty-seven completed surveys, 63.8% of care recipients used a gait aid; 56.9% had ≥2 falls in past year; 66.7% commenced use after dementia diagnosis; 25% acquired their aids from non-health professionals; and 37% did not receive advice regarding use. Gait aid users and non-users differed on carer ratings of unsteadiness in walking/turning (p = 0.02).ConclusionCarers reported important aspects regarding gait aid acquisition, safe gait aid use and benefits which warrant further investigation.IMPLICATIONS FOR REHABILITATIONIn our small sample, use of gait aids by people with dementia was related to the level of unsteadiness in walking and/or turning, and not associated with falling in the past year.People with dementia do not routinely receive professional advice about how to use gait aids, highlighting the potential value of maximizing health professional involvement in gait aid prescription and training.Deterioration in the ability of gait aid use after the diagnosis of dementia indicates a need for re-assessment or re-training of gait aid use over time.Clinical guidelines to facilitate decision-making regarding under what conditions gait aids are beneficial, what duration and aspects require instruction to ensure effective use by people with dementia are needed.

The perceptions of informal carers of older people with dementia about the role of their pharmacists.

As medication experts, pharmacists can play a significant role in helping people living with dementia and their informal carers make the best use of medications. However, little is known about this population's needs and expectations of their pharmacists. The objective of this study was to report informal carers' perceptions about the role of their pharmacists. In a previous study, informal carers were interviewed to explore factors influencing medication adherence in older people living with dementia. The interview transcripts from the previous study were analysed thematically using an inductive approach to explore carers' perceptions about the role of community pharmacists in helping carers and people living with dementia use medications as prescribed. The interviews of 20 informal carers were analysed. Carers were primarily females (85%), married (60%), completed university (60%) and unemployed (70%). The majority of care recipients had comorbidities (75%), and the number of medications ranged from 1 to 20. Three significant roles emerged: (1) provision of medication information, (2) advising on medication organisation and (3) conducting medication reviews. Informal carers face several challenges in administering the medications to older people living with dementia. Pharmacists are expected to play a more active role in helping people living with dementia, and their carers make safe and effective use of medications.

A Cross-European Study of Informal Carers' Needs in the Context of Caring for Older People, and their Experiences with Professionals Working in Integrated Care Settings.

Introduction:Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. It is therefore important that health and social care professionals are knowledgeable about and responsive to informal carers’ needs. This study explores informal carers’ own needs within the context of caregiving; and examines, from the informal carers’ perspective, the extent to which professionals assess, understand and are responsive to informal carers’ needs.Methods:We interviewed (2016–2018) 47 informal carers of older people being served by 12 integrated care initiatives across seven countries in Europe. The interviews were thematically coded inductively and analysed.Results:Informal carers reported that professionals treated them with respect and made efforts to assess and respond to their needs. However, even though professionals encouraged informal carers to look after themselves, informal carers’ needs (e.g., for respite, healthcare) were insufficiently addressed, and informal carers tended to prioritize older people’s needs over their own.Discussion and conclusion:Informal carers need better support in caring for their own health. Health professionals should have regular contact with informal carers and proactively engage them in ongoing needs assessment, setting action plans for addressing their needs, and identifying/accessing appropriate support services. This will be important if informal carers are to continue their caregiving role without adverse effects to themselves.

Support for informal carers of older people in the transition to residential aged care: a scoping review protocol.

This review aims to identify support delivered to informal carers of older people making the transition into residential aged care, and to examine which specific outcome measures were used in the evaluation of the support provided. Little support is provided to informal carers of newly admitted aged care residents, both during the admission process and in the subsequent months. Mapping of the support delivered to informal carers of those admitted to a residential aged care facility is needed. We will include any form of support (eg, financial, psychological, social) provided to informal carers of people making the transition to residential aged care, from the time a decision is made to proceed with admission, up to 12 months post-admission. We will search peer-reviewed literature in English from 2000 to the present from key databases (ie, MEDLINE, CINAHL, Cochrane Library, JBI Evidence Synthesis, PsycINFO, Embase, and Scopus). Additionally, gray literature will be searched through databases (eg, Google, Google Scholar, BASE, OpenGrey, Grey Literature Report, Informit, MedlinePlus, MedNar, Medscape), government websites, and websites of national organizations that provide support for the care of older people. We will use the JBI approach for search strategy, study selection, and data extraction, and will descriptively map the results using a textual narrative synthesis approach.

The mediating role of sense of coherence on mental health outcomes in carers of older dependent relatives: A longitudinal study.

Sense of coherence (SOC) is an important protective factor for carer well-being but research to date remains cross-sectional, focusing primarily on the direct effects of SOC on carers' mental health. The study's aim was to investigate the mediating role of SOC in the longitudinal relationship between caregiver strain and carers' psychological health, and its stability over time. Prospective longitudinal study conducted in Jaén (Spain) with a probabilistic sample of 132 carers of older people, with data collected at baseline and at 1-year follow-up. We measured SOC, caregiver strain, anxiety and depressive symptoms, and several care-recipient characteristics and intensity of care provided. We used multiple linear regression modelling and the Sobel test to analyse mediation effects. SOC was significantly negatively longitudinally associated with both anxiety (β = -0.38, p = 0.001) and depressive symptoms (β = -0.28, p = 0.023), after controlling for several confounders. SOC mediated both the relationship between caregiver strain and anxiety, and caregiver strain and depressive symptoms (Sobel test: p < 0.001 for anxiety and p < 0.001 for depressive symptoms). Differences between baseline and 1-year follow-up SOC scores were not statistically significant (p = 0.617). SOC appears to buffer the impact of caregiver strain on symptoms of depression and anxiety in informal carers of older people. Our data showed that SOC is an important psychological resource for carers that remained relatively stable under non-experimental conditions over a period of 1 year in this sample. The findings suggest that interventions aimed at strengthening SOC may protect carer psychological well-being.

Exploring the Perceived Usefulness and Ease of Use of a Personalized Web-Based Resource (Care Companion) to Support Informal Caring: Qualitative Descriptive Study.

BackgroundInformal carers play an increasingly vital role in supporting the older population and the sustainability of health care systems. Care Companion is a theory-based and coproduced Web-based intervention to help support informal carers’ resilience. It aims to provide personalized access to information and resources that are responsive to individuals’ caring needs and responsibilities and thereby reduce the burdens associated with caregiving roles. Following the development of a prototype, it was necessary to undertake user acceptability testing to assess its suitability for wider implementation.ObjectiveThis study aimed to undertake user acceptance testing to investigate the perceived usefulness and ease of use of Care Companion. The key objectives were to (1) explore how potential and actual users perceived its usefulness, (2) explore the barriers and facilitators to its uptake and use and (3) gather suggestions to inform plans for an area-wide implementation.MethodsWe conducted user acceptance testing underpinned by principles of rapid appraisal using a qualitative descriptive approach. Focus groups, observations, and semistructured interviews were used in two phases of data collection. Participants were adult carers who were recruited through local support groups. Within the first phase, think-aloud interviews and observations were undertaken while the carers familiarized themselves with and navigated through the platform. In the second phase, focus group discussions were undertaken. Interested participants were then invited to trial Care Companion for up to 4 weeks and were followed up through semistructured telephone interviews exploring their experiences of using the platform. Thematic analysis was applied to the data, and a coding framework was developed iteratively with each phase of the study, informing subsequent phases of data collection and analysis.ResultsOverall, Care Companion was perceived to be a useful tool to support caregiving activities. The key themes were related to its appearance and ease of use, the profile setup and log-in process, concerns related to the safety and confidentiality of personal information, potential barriers to use and uptake and suggestions for overcoming them, and suggestions for improving Care Companion. More specifically, these related to the need for personalized resources aimed specifically at the carers (instead of care recipients), the benefits of incorporating a Web-based journal, the importance of providing transparency about security and data usage, minimizing barriers to initial registration, offering demonstrations to support uptake by people with low technological literacy, and the need to develop a culturally sensitive approach.ConclusionsThe findings identified ways of improving the ease of use and usefulness of Care Companion and demonstrated the importance of undertaking detailed user acceptance testing when developing an intervention for a diverse population, such as informal carers of older people. These findings have informed the further refinement of Care Companion and the strategy for its full implementation.

Exploring the Views and Dietary Practices of Older People at Risk of Malnutrition and Their Carers: A Qualitative Study.

Background: While malnutrition is an important cause of morbidity and mortality in older people, it is commonly under-recognised. We know little on the views of community-dwelling older people and their carers regarding the management of malnutrition. The aim of the study was: (a) to explore views and dietary practices of older people at risk of malnutrition and their carers; (b) to identify gaps in knowledge, barriers and facilitators to healthy eating in later life; (c) to explore potential interventions for malnutrition in primary care. Methods: A qualitative study was performed using semi-structured interviews with participants recruited from four general practices and a carers’ focus group in London. Community-dwelling people aged ≥75, identified as malnourished or at risk of malnutrition (n = 24), and informal carers of older people (n = 9) were interviewed. Data were analysed using thematic analysis. Results: Older people at risk of malnutrition rarely recognise appetite or weight loss as a problem. Commonly held perceptions include that being thin is healthy and ‘snacking’ is unhealthy. Changes in household composition, physical or mental health conditions and cognitive impairment can lead to inadequate food intake. Most carers demonstrate an awareness of malnutrition, but also a lack of knowledge of what constitutes a nutritious diet. Although older people rarely seek any help, most would value advice from their GP/practice nurse, a dietitian or another trained professional. Conclusion: Older people at risk of malnutrition and their carers lack knowledge on nutritional requirements in later life but are receptive to intervention. Training for health professionals in delivering tailored dietary advice should be considered.

Psychological outcomes of eCare technologies on informal carers of older people

An introduction : With increasing age and longevity, the needs for long-term care and thus informal care, will increase significantly in the coming decades. The use of eCare technologies has a huge potential in solving challenges related to demographic changes and decreased care potential. However little is known about the potential of eCare technologies in relation to psychological outcomes on informal carers. Theory/Methods : The scoping review based on Arksey & O'Malley framework, includes 17 studies published since 2013. Peer reviewed papers, written in English, investigating the use of eCare technologies in informal care and their psychological outcomes on informal carers, were included. Non-scientific studies, and studies which focused on psychological counselling or training through internet or phone, were excluded. The search was conducted in Academic search complete, Scopus, ProQuest and Science Direct in October 2017. We explored the psychological outcomes of eCare technologies on informal carers of older people. Results : We identified three wider themes: a peace of mind and reassurance of informal carers, b positive psychological outcomes, burden and quality of life of informal carers while using eCare technologies, c negative outcomes of technology on informal carers. The review also showed that monitoring devices were most reported eCare technologies in relation to positive psychological outcomes. Discussions : Our study revealed a dearth of research on psychological outcomes of eCare technologies on informal carers. Informal carers of people with dementia were most frequently mentioned in selected studies, which can be due to the nature of the disease and its caring demands. Another open issue is whether positive psychological outcomes could be increased if informal carers’ needs, perspectives and issues would be more considered by ICT developers and designers. Nowadays, ICT designers concentrate their work mostly on the services’ functionalities and applications. Conclusions : The results show a strong connection between older peoples' safety and carers' peace of mind, which can be reached through eCare technology. Although there were some contradictions of outcomes across the studies, there is at least some evidence to support the use of eCare technologies in an effective approach in alleviating negative psychological outcomes e.g. burden reduction, increased peace of mind of informal carers. Lessons learned : Availability, accessibility, appropriateness, acceptability and affordability of eCare technologies are future challenges that still need to be considered more systematically. Limitations : The review contained a small number of selected studies, and even though there were other technological solutions identified during the search, we did not include internet-based interventions. Despite, the search key words used in the review were broadly inclusive in order to capture all studies, the search was limited to four databases and our scoping review search was limited to English studies only. Suggestions for future research : Further investigation is needed on psychological outcomes of eCare technologies on different groups of carers and on key technological features that have a psychological impact on informal carers. There is a need for more scientific evidence whether the eCare technologies actually fulfil older people and informal carers' needs and that were cost efficient.

An integrative review of information and communication technology based support interventions for carers of home dwelling older people.

BACKGROUND:A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research.OBJECTIVE:To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes.METHODS:This integrative review includes 123 studies published since 2005. Fundamental questions for designing sensitive support interventions; ‘who, what, and how’ were applied to a synthesis of the results.RESULTS:Identified characteristics from the studies responding to the who question included variables of the carers, such as their relationship with the care recipient or their ethnicity. Characteristics related to the what question related to the types of interventions, and the how question concerned the different services or programs offered, the idiosyncratic needs of the carers, and the types of technologies used.CONCLUSION:Results are discussed according to micro, meso and macro levels of analysis. This extensive review can inform future studies and highlight the evidence in the area for decision makers, practitioners and/or NGOs working with innovative forms of support for carers of older people.

Components of the difficulties, satisfactions and management strategies of carers of older people: A principal component analysis of CADI-CASI-CAMI

Objectives: To perform a psychometric evaluation of the Carers Assessment of Difficulties Index, Carers Assessment of Satisfactions Index and the Carers Assessment of Managing Index (CADI-CASI-CAMI). Method: Data was collected in three European countries from informal carers of older people (n = 295) via a common protocol. Carers completed: (a) a questionnaire containing items on demographics and caregiving characteristics and (b) the CADI-CASI-CAMI indices. Principal component analysis of the CADI-CASI-CAMI indices was followed by internal consistency analysis of emergent components. Scales derived by summing items loading on the components were analysed for their association with the demographic and caregiving characteristic variables. Results: CADI produced six internally consistent and interpretable components, CASI five and CAMI seven. Subscales derived from the components were significantly associated with the demographic and caregiving characteristic variables, providing initial support for construct validity. Conclusion: The CADI-CASI-CAMI indices are recommended as an assessment tool for in-depth work with family carers of older people and as a research tool for large-scale studies of family care.

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.

Caring for older people in the 21st century: ‘Notes from a small island’

Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers’ views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home.

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.

Gate keeping and legitimisation were central in the interactions between informal carers of older people and healthcare workers

Gate keeping and legitimisation were central in the interactions between informal carers of older people and healthcare workers

Gatekeeping and legitimization: how informal carers' relationship with health care workers is revealed in their everyday interactions.

This study explores the relationship between informal carers of older people, and health care workers within the context of a hospital ward. Through an analysis of their language-based encounters the purpose of the study was to identify the discursive processes involved in face-to-face informal carer-health care worker interactions, during the course of carers' visits to one elderly care rehabilitation hospital ward. An ethnomethodological research design, which encompassed the concerns of conversation analysis and the study of institutional interaction, was used. The study involved videotape recording informal carers naturally occurring spontaneous interactions with a range of health care workers on the ward. Data collection was carried out for between 1 and 3 hours, two to three times a week over a period of 3 months. The data comprised: 30 dyadic and group interactions involving 19 different carers and 25 different health care workers, including nurses (qualified and unqualified), physiotherapists, occupational therapists, dieticians, ambulance personnel, housekeepers and nursing auxiliaries. Detailed transcriptions of the data were produced and analysis was undertaken using a modified conversation analysis approach. Analysis revealed that a central aspect of the way the relationship between informal carers and health care workers is framed is by the way information and access to information is obtained. This paper examines some of the aspects of informal carer-health care worker discourse, which denote both parties as gatekeepers. In doing so it considers the roles that legitimatization of competence and knowledgeability have in facilitating informal carers interactions with health care workers. We conclude that the accomplishment of legitimacy is largely a collaborative undertaking on behalf of health care workers and informal carers. The implications of these findings for carers, health care workers, policy and future research are discussed.

Focus group methodology

Introduction Researching individual perspectives of care giving is a complex and arduous exercise, sometimes fraught with design difficulties (Zarit et al 1999). The need to address the methodological challenges of user-focused approaches to research on older persons has been expressed by experts in the field (McCormack and Ford 1999). In order to overcome perceived difficulties, some studies have chosen a triangulation of both qualitative and quantitative approaches aimed at obtaining a more comprehensive picture of need (Judge and Solomon 1992, Denman 1998). The authors’ area of study incorporates user consultation and participation as integral elements in the research process. It embraces the inclusion, recognition and representation of informal carers of older people, fostering the United Nation’s central tenets of care, dignity, independence, participation and self-fulfilment (Sidorenko 1999). The investigation set out to elicit and prioritise carers’ subjectively perceived needs in relation to service assessment, planning, delivery and evaluation. This empowering approach represents a challenge to broaden the focus of healthcare through a process that elicits the views of key stakeholders. Its principles can be applied where changes are required in response to user needs in a variety of practice settings. The decision to designate 1999 as the International Year of Older Persons raised the profile of issues pertaining to older people and their carers. It is important that carers are involved in the decision-making processes that underpin policy development. Nonetheless, research evidence suggests that informal carers have not been involved meaningfully in service planning processes (Ruddle et al 1997). Previous studies in Britain (Thornton and Tozer 1994, Myers and MacDonald 1996) and Scotland (Stalker et al 1993) have explored initiatives aimed at consulting with older people and their carers in