Support For Informal Caregivers Research Articles

A Feasibility Study of Qualitative Methods Using the Zarit Burden Interview in Heart Failure Caregivers

ObjectivesThe primary goal of this study was to identify and understand the burden experienced by informal caregivers of patients with HF at the time of hospital discharge. The researchers aimed to guide future education interventions and promote informal caregiver burden screening. DesignThe researchers administered the Zarit Burden Interview (ZBI) as a quantitative tool to assess informal caregiver burden. The ZBI is a standardized questionnaire used to measure the extent of burden experienced by informal caregivers. After administering the ZBI, the researchers conducted semi-structured interviews with five informal caregivers of patients with HF. These interviews were guided by probing questions related to ZBI items that were rated with high levels of burden (3 “quite frequently” or 4 “nearly always”). ResultsThe quantitative data showed that the informal caregivers' burden scores on the ZBI ranged from 4 to 41. Male informal caregivers tended to report lower burden scores. The non-spouse informal caregiver had the highest burden score at 41. The qualitative analysis of the interviews revealed several themes related to informal caregiver burden, including fear, patient expectations, patient dependence on caregivers, social isolation, and stressors associated with medication changes after discharge. Despite the qualitative insights into specific burden-related issues, the quantitative analysis of the ZBI scores showed that, on average, informal caregivers reported little to no burden at the time of acute exacerbation of HF in the patient. ConclusionThe study's findings suggest that while informal caregivers may not report prominent levels of overall burden, they do face specific challenges and stressors, such as social isolation and managing medication changes post-discharge. These findings can inform the development of targeted support and interventions for informal caregivers of patients with HF.

The Importance of Providing Training to Informal Caregivers of Hospice Patients: Caregiver Experience With Hospice Care Based on Consumer Assessment of Healthcare Providers & Systems Surveys.

Informal caregivers aid hospice patients at the end of life. Little is known of their preparation and confidence in providing care, and how this relates to experiences of hospice care. Examine factors associated with informal caregivers' rating of home hospice care. Data come from 828 completed CAHPS® surveys mailed between January 2022 and December 2023 from a single non-profit Hospice organization. Multivariate logistic regression analyses examined the independent influence of various aspects of hospice care on ratings of hospice. Nine of every 10 respondents rated hospice care high (9 or 10). Most aspects of hospice care were rated favorably. Nearly all respondents felt the patient was treated with dignity and respect (96%). The measure with the greatest room for improvement was getting help as soon as needed (82% "always"). Multivariate analyses revealed 6 factors that independently predicted overall rating of hospice care. The strongest predictor was always getting help as soon as needed, followed by believing the hospice team cared about the patient. Three measures of caregiver training were significantly associated with higher ratings of hospice care being trained to: safely move the patient, what to do if patient became restless, and on pain medications. When informal caregivers feel trained to assess and manage the symptoms, they rate hospice care more favorably. Greater attention to informal caregiver training and support are imperative to improving hospice care.

Impact of care–recipient relationship type on quality of life in caregivers of older adults with dementia over time

Abstract Background Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers. Objective To evaluate whether the care–recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period. Methods This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult–child, “other” caregiver and “multiple” caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers’ QoL outcomes across types of relationship over time. Results About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers’ socio-demographics, “other” caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD’s dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively). Conclusions The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.

Digital Adoption by an Organization Supporting Informal Caregivers During COVID-19 Pandemic Showing Impact on Service Use, Organizational Performance, and Carers' Well-Being: Retrospective Population-Based Database Study With Embedded User Survey.

The COVID-19 pandemic has catalyzed a move from face-to-face to digital delivery of services by hospitals and primary care. However, little is known about the impact of digital transformation on organizations supporting unpaid caregivers. Since the start of the COVID-19 pandemic, the value of care provided by such informal caregivers is estimated to be £111 billion (US$ 152.7 billion) in England. This study aims to analyze service uptake patterns (including digital service options) over the pandemic period in an English caregivers' support organization covering a population of 0.98 million; measure changes in organizational performance, service efficiency, and quality; and identify the views of caregivers on service provision and future digital delivery. This was a retrospective analysis of the use of digital versus nondigital support services (January 2019 to June 2021) by caregivers in city and rural geographic areas. We compared organizational performance and service quality indicators for 2 financial years (2019-2020 and 2020-2021). A survey was conducted to identify barriers and facilitators to digital service uptake, the computer proficiency of caregivers (the Computer Proficiency Questionnaire, 12-item version), and preferences for future digital service provision. Quantitative data were analyzed using Stata 13 (StataCorp LLC). Thematic analysis was used for open-text survey responses. The number of caregivers registered with the organization rose from 14,817 in 2019 to 20,237 in 2021. Monthly contacts rose from 1929 to 6741, with remote contacts increasing from 48.89% (943/1929) to 86.68% (5843/6741); distinctive patterns were observed for city versus rural caregivers. There was an increase in one-to-one contacts (88.8%) and caregiver assessments (20.9%), with no expansion in staffing. Service quality indicators showed an improvement in 5 of 8 variables (all P<.05). The 152 carers completing the survey had similar demographics to all registered caregivers. The Computer Proficiency Questionnaire, 12-item version, mean score of 25.61 (SD 4.40) indicated relatively high computer proficiency. The analysis of open-text responses identified a preference for the organization to continue to offer face-to-face services as well as web-based options. The digital services that were the most highly rated were carers' well-being assessments, support needs checks, and peer support groups. Our findings show that staff in the caregiver support organization were agile in adapting their services to digital delivery while dealing with increased numbers of registered clients and higher monthly contacts, all without obvious detriment to service quality. Caregivers indicated a preference for blended services, even while recording high computer proficiency. Considering the economic importance of unpaid caregivers, more attention should be given to organizations funded to provide support for them and to the potential for technology to enhance caregivers' access to, and engagement with, such services.

Healthcare and social care professionals’ experiences of respite care: a critical incident study

ABSTRACT Introduction Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care can offer support, its accessibility is hindered by organizational challenges and informal caregivers’ delays in using it. The experiences of informal caregivers are well-studied, but the professionals’ experiences of respite care quality and critical incident management are underexplored. Aim To explore professionals’ experiences of critical incidents in respite care, consequences for the persons being cared for, and strategies to manage critical incidents. Materials and methods A qualitative, critical incident technique was used, and three group interviews with a total of 16 professionals were conducted. Results Barriers to quality respite care included communication gaps during care transitions, environmental shortcomings in respite care facilities, lack of support for informal caregivers, and inadequacies in respite care decisions. Strategies to manage critical incidents included individualized care, continuity and communication in care transitions, a conducive environment, support for informal caregivers, and care professionals’ positive approach. Conclusions The study emphasizes the need for focused efforts on communication, continuity, and a supportive environment. Addressing identified challenges and applying suggested strategies will be key to maximizing the potential of respite care as a vital support for care recipients and their informal caregivers.

Opportunities in Mental Health Support for Informal Dementia Caregivers Suffering from Verbal Agitation

People with dementia (PwD) often present verbal agitation such as cursing, screaming, and persistently complaining. Verbal agitation can impose mental distress on informal caregivers (e.g., family, friends), which may cause severe mental illnesses, such as depression and anxiety disorders. To improve informal caregivers' mental health, we explore design opportunities by interviewing 11 informal caregivers suffering from verbal agitation of PwD. In particular, we first characterize how the predictability of verbal agitation impacts informal caregivers' mental health and how caregivers' coping strategies vary before, during, and after verbal agitation. Based on our findings, we propose design opportunities to improve the mental health of informal caregivers suffering from verbal agitation: distracting PwD (in-situ support; before), prompting just-in-time maneuvers (information support; during), and comfort and education (social &amp; information support; after). We discuss our reflections on cultural disparities between participants. Our work envisions a broader design space for supporting informal caregivers' well-being and describes when and how that support could be provided.

Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With Dementia

The CSCW and HCI community has increasingly examined ways to support informal caregivers through technology, given the increasing burden and its consequences on caregivers' emotional and physical health. In this paper, we interviewed 12 informal caregivers of Persons Living With Dementia (PLWD) to understand their needs and current coping strategies for overcoming caregiving burden, specifically around emotion work. The caregivers associated different personal meanings with caregiving. Participants wanted technology to take over some of the utilitarian, mundane caregiving tasks. At the same time, they did not want technology to take over the tasks that fostered personal connections with PLWD. As the disease progressed, caregivers started to lose their perceived bond with PLWD, making it more challenging to juggle between rewarding, positive emotions with negative experiences. We discuss such complexity of emotion work using the notion of Invisible Work to understand when technology should or should not support the emotion work engaged in informal caregiving.

Assessing Culturally Tailored Dementia Interventions to Support Informal Caregivers of People Living with Dementia (PLWD): A Scoping Review.

The review aimed to identify and describe dementia care interventions and programs that are culturally tailored to support racial and ethnic minority informal caregivers of community-dwelling people living with dementia (PLWD) to identify gaps in need. Culturally targeted interventions to support vulnerable minority informal caregivers are important in addressing the care needs of PLWD and eliminating racial and ethnic dementia disparities. Nevertheless, little is known about the existing interventions and programs that are culturally tailored to support racial and ethnic minority groups, in particular, African-American caregivers in the care of their family members. We conducted a Scoping review, searching eight databases including MEDLINE, EMBASE, APA PsycINFO, CINAHL, PUBMED, Scopus, and Web of Science between January 2012 and June 2022. Our search identified 2669 records, of which 17 articles were included in the analysis. The review addressed how these interventions have been developed to meet the needs and preferences of minority caregivers, particularly, African-American caregivers in culturally responsive ways. Findings show that culturally tailored interventions have the potential to improve the caregiving ability of informal caregivers. Supporting informal caregivers appears to be an effective strategy often improving the well-being of PLWD and reducing caregiver burden. The review demonstrates the paucity and diversity of research on culturally tailored dementia interventions to reduce racial and ethnic disparities. This scoping review identified gaps in the existing literature and aims for future work to develop and investigate cultural tailoring of interventions.

Feedback System Analysis of a Multicomponent Intervention on Dyads of Home-Dwelling Persons With Dementia and Their Caregivers: Results From the LIVE@Home.Path Trial.

Proper symptom management, informal caregiver support, and service innovation are required to reduce dementia care burden. The objective of this study is to investigate the effect of the multicomponent LIVE (Learning, Innovation, Volunteering, Empowerment) intervention on caregiver experience of the self-perceived care situation, coordinator performance, and informal care time. We conducted a 24-month multicomponent, stepped-wedge randomized control trial including dyads of people ≥65 years with mild-to-moderate dementia with minimum weekly contact with their informal caregivers in Norway. The intervention was implemented by municipal coordinators over a 6-month period. This study investigates the first 6-month period (September 2019-March 2020) of the trial, due to the coronavirus disease 2019 (COVID-19) pandemic. Primary outcomes are changes in provision of informal care time assessed by Resource Utilization in Dementia Care (RUD) and informal caregiver experience assessed by the Clinical Global Impression of Change (CGIC). We use logistic regression and feedback system analysis to assess the reach of the multicomponent intervention. A total of 280 dyads were included at baseline, mean age of the person with dementia was 81.8 years, and 62.5% were female. After 6 months, the feedback system analysis reveals that the caregivers randomized to the intervention period reported improved caregiver situation (CGIG-T: intervention 0.63 (SD 2.4) vs control -0.43 (SD 1.7), p < .01), even though informal care time for activities of daily living was not reduced (p = .31). Informal caregivers registered a positive change for the Learning, Innovation, and Empowerment components, while no change was found for Volunteer support. Findings illustrate the usefulness of dementia care coordinators that provide regular follow-up. We also show that complex intervention studies benefit from applying feedback system analysis. Meeting the needs of persons with dementia and their caregivers is a complex process that requires coordinated input from health services and user communities. NCT04043364.

Development of a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J-10) among informal caregivers of older adults.

To support informal caregivers, a simple assessment tool capturing the multidimensional nature of caregiving experiences, including negative and positive aspects, is required. We developed a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J), a multidimensional assessment scale for caregiver experiences. The internet survey involved 934 Japanese informal caregivers aged 20-79 years (mean age = 58.8 years; 50.2% women) who completed questionnaires, including the CRA-J 18 items (CRA-J-18), consisting of five domains, such as impacts on schedule and finances and positive experiences of caregiving. A 10-item short version of the CRA-J (CRA-J-10; 0-50 points), which was prepared by selecting the two items with the highest factor loadings from each domain, was tested for model fit by confirmatory factor analysis (CFA) and was analyzed for correlations with the CRA-J-18, Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Scale (PACS), Patient Health Questionnaire-9 (PHQ-9), and WHO-Five Well-Being Index (WHO-5). The area under the curve (AUC) in the receiver operating characteristic was evaluated as discriminability for depressive symptoms (PHQ-9 ≥ 10 points). The CFA indicated a good model fit in the CRA-J-10. The CRA-J-10 correlated well with the CRA-J-18 and other variables (CRA-J-18, r = 0.970; ZBI, r = 0.747; PACS, r = -0.467; PHQ-9, r = 0.582; WHO-5, r = -0.588) and showed good discriminant performance for the presence of depressive symptoms (AUC = 0.793, 95% confidence interval = 0.762-0.823). The CRA-J-10 allows a simple assessment of caregiver experiences, helping support informal caregivers. Geriatr Gerontol Int 2024; 24: 290-296.

AI-Powered Solutions to Support Informal Caregivers in Their Decision-Making: A Systematic Review of the Literature &lt;sup&gt;&lt;a class="tippyShow" data-tippy-arrow="true" data-tippy-content="This article is an extended version of the conference paper: Milella F, Russo DD, Bandini S, How artificial intelligence can support informal caregivers in their caring duties to elderly? a systematic review of the literature. In: AIXAS2023 Italian Workshop on Artificial Intelligence

Due to aging demographics, prolonged life expectancy, and chronic diseases, European societies' increasing need for care services has led to a shift towards informal care supplied by family members, friends, or neighbors. However, the progressive decrease in the caregiver-to-patient ratio will result in a significant augmentation in incorporating intelligent aid within general care. This study aimed to build upon the authors' previous systematic literature review on technologies for informal caregivers. Specifically, it focused on analyzing AI-based solutions to understand the advantages and challenges of using AI in decision-making support for informal caregivers in elderly care. Three databases (Scopus, IEEE Xplore, ACM Digital Libraries) were searched. The search yielded 1002 articles, with 24 that met the inclusion and exclusion criteria. Within the scope of this study, we will exclusively concentrate on a subset of 11 papers on AI technologies. The study reveals that AI-based solutions have great potential for real-time analysis advancement, explainable AI enhancement, and meta-information semantic refinement. While digital assistants can personalize information for caregivers, security and privacy are key concerns. The rise of more integrated and complicated solutions reveals that these technologies suit aging monitoring and informal care coordination in emergencies or deviations from usual activities. Informal caregiver decision assistance can be improved in this scenario.

Projected costs of informal care for older people in England

BackgroundHealth economics research and economic evaluation have increasingly taken a societal perspective, accounting for the economic impacts of informal care. Projected economic costs of informal care help researchers and policymakers understand better the long-term consequences of policy reforms and health interventions. This study makes projections of the economic costs of informal care for older people in England.MethodsData come from two national surveys: the English Longitudinal Study of Ageing (ELSA, N = 35,425) and the Health Survey for England (N = 17,292). We combine a Markov model with a macrosimulation model to make the projections. We explore a range of assumptions about future demographic and epidemiological trends to capture model uncertainty and take a Bayesian approach to capture parameter uncertainty.ResultsWe estimate that the economic costs of informal care were £54.2 billion in 2019, three times larger than the expenditure on formal long-term care. Those costs are projected to rise by 87% by 2039, faster than public expenditure but slower than private expenditure on formal long-term care. These results are sensitive to assumptions about future life expectancy, fertility rates, and progression of disabilities in the population.ConclusionsPrevention schemes aiming to promote healthy aging and independence will be important to alleviate the costs of informal care. The government should strengthen support for informal caregivers and care recipients to ensure the adequacy of care, protect the well-being of caregivers, and prevent the costs of informal care from spilling over to other sectors of the economy.

Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment

IntroductionAgeing in place (AIP) for persons with dementia is encouraged by European governments and societies. Healthcare packages may need reassessment to account for the preferences of care funders, patients and...

P183: Online support and training for informal caregivers of people with dementia: usability and feasibility of iSupport for Dementia

Introduction:Internet-based interventions have been explored for their potential to minimize the negative outcomes of caring, accounting for their convenient delivery, ubiquity, potential scalability and presumed (cost) effectiveness. A new online training and support programme for dementia caregivers was recently created by the World Health Organization and culturally adapted to European-Portuguese. The programme (iSupport) was developed to prevent or minimize the negative psychological effects of providing informal care to a person with dementia and relies on problem-solving and cognitive behavioural therapy techniques.Objective:To study the usability and feasibility of the European-Portuguese version of iSupport (iSupport- Portugal).Methods:The usability study was aimed at collecting data on user satisfaction and requirements on the programme's contents and interface. A mixed-methods design consisted of focus groups discussion and usability test sessions with informal caregivers (N=17) and health/social support professionals (N=13). The pilot study followed a mixed-methods experimental parallel between-group design with two arms (iSupport, N=21 and e-book, N=21).Results:The usability tests show a success rate superior to 80% in completing tasks within the platform and an excellent perception of the program's usability (M= 89.5 on the System Usability Scale). The feasibility study allowed to explore usage data for iSupport-Portugal (e.g., lessons visited, time on sessions) and explore how the intervention and control arms compare over time (baseline, 3 and 6 months after) on well-being outcomes. For a per-protocol analysis, significant group-by-time interaction effects favouring the intervention were found for anxiety (Wald χ2=6.17, p=.046) and for environmental QoL (Wald χ2=7.06, p=.029). Interviewees with the intervention arm (N=12) revealed positive impacts of iSupport on knowledge and on experiencing positive feelings.Conclusion:The usability and feasibility studies of iSupport-Portugal suggest that this is a promising resource to support informal dementia caregivers. Lessons were learned on the ethical, technological, and research-related challenges for online interventions.

State Supplemental Benefits for Informal Kinship Caregivers: A Comparative Policy Analysis

Kinship caregivers raise relative children who are unable to be cared for by their parents. Most kinship caregiving takes place outside the child welfare system (“informal” care), meaning that caregivers do not have access to foster care payments to offset the costs of child rearing. The main source of financial support for informal kinship caregivers is Child-Only TANF, which is inadequate to meet the full range of caregiver needs. To address this funding gap, the authors present a comparative policy analysis of seven programs in six states that have implemented supplemental state funds for informal kinship caregivers. The authors analyze key features of each program and compare the socioeconomic and political characteristics of states that offer supplemental caregiver benefits to those of states that do not. Recommendations for policy and practice are discussed.

Personalized Technological Support for Informal Caregivers of Older People with Dementia: A Co-Design Approach Involving Potential End Users and Healthcare Professionals in Three Focus Groups in Italy.

Informal/family caregivers (ICs) of older people with dementia (PwD) can suffer from depression and burnout. However, digital solutions can potentially provide innovative ways to facilitate care provision. The aim of this study was to analyze the opinions of end users (EUs), i.e., PwD aged 65 years and over and their ICs and healthcare professionals (HPs), on the use of digital technology to support care activities. Qualitative data were collected during the co-design phase of the European project "DemiCare-Personalized support for informal caregivers of people with dementia". This study focused on the Italian context and included two PwD, three ICs, and seven HPs. Three focus groups were held in April-June 2022. Qualitative data were analyzed using MaxQDA 2020 software. Seven thematic areas were identified: daily activities, care tasks, information needs, support received, relationship with and expectations from technology, functionality of the DemiCare integrated system, and ethical issues. Smart devices seemed to be received positively by ICs and HPs, although older PwD seemed to have difficulty accepting the technology. Overall, despite the low number of participants, it seems important and potentially effective to consider the needs and preferences of PwD during exploratory co-design to allow social interactions with them. This study was not registered.

A focus groups study of staff team experiences of providing interdisciplinary rehabilitation for people with dementia and their caregivers—a co-creative journey

BackgroundThe World Health Organization claims that rehabilitation is important to meet the needs of persons with dementia. Rehabilitation programmes, however, are not routinely available. Person-centred, multidimensional, and interdisciplinary rehabilitation can increase the opportunities for older adults with dementia and their informal primary caregivers to continue to live an active life and participate in society. To our knowledge, staff team experiences of such rehabilitation programmes, involving older adults with dementia and their informal caregivers has not been previously explored.MethodsThe aim of this qualitative focus group study was to explore the experiences of a comprehensive staff team providing person-centred multidimensional, interdisciplinary rehabilitation to community-dwelling older adults with dementia, including education and support for informal primary caregivers. The 13 staff team members comprised 10 professions who, during a 16-week intervention period, provided individualised interventions while involving the rehabilitation participants. After the rehabilitation period the staff team members were divided in two focus groups who met on three occasions each (in total six focus groups) and discussed their experiences. The Grounded Theory method was used for data collection and analysis.ResultsThe analysis resulted in four categories: Achieving involvement in rehabilitation is challenging, Considering various realities by acting as a link, Offering time and continuity create added value, and Creating a holistic view through knowledge exchange, and the core category: Refining a co-creative process towards making a difference. The core category resembles the collaboration that the staff had within their teams, which included participants with dementia and caregivers, and with the goal that the intervention should make a difference for the participants. This was conducted with flexibility in a collaborative and creative process.ConclusionsThe staff team perceived that by working in comprehensive teams they could provide individualised rehabilitation in creative collaboration with the participants through interaction, knowledge exchange, time and continuity, coordination and flexibility, and a holistic view. Challenges to overcome were the involvement of the person with dementia in goal setting and the mediating role of the staff team members. The staff pointed out that by refinement they could achieve well-functioning, competence-enhancing and timesaving teamwork.

Informal Caregiving in Adolescents from 10 to 16 Years Old: A Longitudinal Study Using Data from the Tokyo Teen Cohort.

There is growing evidence of the impact of informal caregiving on adolescent mental health, and its role is often hidden unintentionally or intentionally, which may hamper early identification and support for young informal caregivers. However, the quantitative evidence regarding household factors relating to informal caregiving has mostly been based on cross-sectional findings. This study examines the longitudinal associations between household characteristics and the duration of informal caregiving in adolescents from 10 to 16 years of age. Child-household respondent pairs (n = 2331) from the Tokyo Teen Cohort in Japan were followed every 2 years from 10 to 16 years of age. Informal caregiving was assessed repeatedly based on the household respondent's survey responses. Persistent caregiving was defined as daily caregiving at two or more waves. There were 2.2% of children who gave daily care at two or more waves. Cross-sectional associations with daily informal caregiving at each wave were found with girls, low household income, and cohabiting with grandparents. A significant association with persistent caregiving was found only in cohabiting with grandparents at 10 years of age after adjusting for sex, number of siblings, single parent, and household income. Our longitudinal examination highlighted cohabiting with grandparents as a preceding factor for persistent caregiving. Identification and support for young informal caregivers should be integrated into social care service systems for older adults. The mechanism of persistent caregiving requires clarification.

Caregiver contributions to general and specific self-care of patients affected by heart failure and other chronic conditions

Abstract Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): Centre of Excellence for Nursing Scholarship (CECRI), Rome, Italy. Background Older adults with HF and other chronic conditions often need the support of informal caregivers in performing self-care. Caregiver contribution (CC) to patient’s self-care includes a series of recommendations (or acts to replace) made to the patient to keep their own health conditions stable and manage signs and symptoms of their chronic conditions. CC to general and specific patient self-care represents help that improves patient clinical outcomes and maintains the stability of chronic conditions. To date, no studies have investigated general and specific caregiver contributions to the self-care of patients with Heart Failure (HF) and other chronic conditions. Purpose Investigate caregiver contribution to general and specific self-care in patients affected by HF and other chronic conditions. Methods Cross-sectional study. Data collection was conducted in community and outpatient settings, from April 2017 to October 2021. Caregivers of patients affected by HF and other chronic condition were enrolled if they were &amp;gt;18 years old and identified by the patient as the primary informal caregiver. Caregiver Contribution to Self-Care of Chronic Illness Inventory (CC-SC-CII) and Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI), were used for measuring generic and specific CC to self-care, respectively. Values ≥70 indicate adequate CC to general and specific self-care behaviors. Paired t-test was carried out to test differences in CC-SC-CII and CC-SCHFI scores. Results This study enrolled 369 caregivers caring for HF patients and other chronic conditions. The sample was composed mainly of females (61.27%) with a mean age of 45.0 (±1.41) years, and that lived with their loved ones (55.28%). The two chronic conditions most frequently associated in patients with HF cared for by informal caregivers were hypertension (75%) and diabetes mellitus (70%). General CC to self-care maintenance, monitoring, and management were adequate with mean scores of 70.57 (±21.6), 81.47 (±21.85), and 72.98 (±20.61), respectively. Specific CC to self-care maintenance, monitoring, and management were inadequate with mean scores of 64.49 (±16.76), 54.08 (±26.71), and 65.24 (±17.25), respectively. CC-SC-CII scores were significantly (p&amp;lt;.0001) higher than CC-SCHFI scores. Conclusion Caregivers showed more difficulties in the contribution to specific HF self-care compared to general self-care behaviors. Knowing how caregivers contribute to self-care is important for clinicians to develop psychosocial interventions for improving CC to self-care in patients with HF and other chronic conditions.

European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease.

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.