Care Recipients Research Articles

Is Home Care Use Associated With Secondary Health Conditions in Persons With Spinal Cord Injury? Findings From a Longitudinal Cohort Study.

The aims of the study are to describe the use of professional home care in persons with spinal cord injury over a 10-yr period from 2012 to 2022 and to examine how the use of home care is associated with the future occurrence of secondary health conditions and hospitalizations. This is a longitudinal questionnaire survey as part of the Swiss Spinal Cord Injury Cohort Study, conducted in 2012, 2017, and 2022. There were 1549, 1294, and 1158 participants in the three surveys in 2012, 2017, and 2022. The percentage of home care users decreased from 23% in 2012 to 22% in 2017 and 19% in 2022. Fewer home care recipients reported pain (odds ratio 0.52, 95% confidence interval 0.29-0.94), with no reductions in other secondary health conditions, 5 yrs later. Study participants who received home care were more likely to be hospitalized (odds ratio 1.89, 95% confidence interval 1.05-3.42), 5 yrs later. There is a declining trend in the use of home care services among persons with SCI. While home care is associated with lesser development of pain, it does not generally reduce secondary health conditions. Individuals who receive home care are significantly more likely to report hospitalization 5 yrs later.

Seizing overflows: exploring how accounting becomes emancipatory

Purpose Through an in-depth case study, this paper aims to investigate how workplace struggles can meaningfully change management accounting practices. Design/methodology/approach This is an archival study drawing on 10 years of governmental documents, news media and a court case. The theoretical notions of framing and overflowing are used to investigate how a calculative change was introduced, problematized and reverted. Findings An initiative to increase care quality through the empowerment of care recipients led to a calculative change and to an intensification of work, which union representatives turned into a health and safety complaint. “Seizing” the overflow from the calculative change and “redirecting” it into the health and safety arena allowed the unions to draw support from the national work health and safety agency. In response, the organization rolled back the calculative change. Originality/value This paper introduces the notions of seizing and redirecting overflows. When combined with conduits of overflows, a part of Callon’s (1998) conceptual apparatus that previously has received little attention, these notions constitute a framework that helps identify conditions that make emancipatory uses of accounting and control outputs possible.

Telemonitoring activities of daily living in home healthcare services to support aging in place

Abstract Context Assessing older adults’ abilities to carry out their activities of daily living (ADLs) is a key determinant in the provision of homecare services for aging in place. Amidst a growing aging population and lack of human resources, continuous remote monitoring technology appears promising to support health and social care professionals (HSCPs) in identifying service needs. However, implementation studies conducted in real-life settings are lacking. This study is part of an on-going action design research project aimed at developing an ambient telemonitoring system monitoring ADLs to support clinical decision making. It focused on the initial step of implementation and aimed to understand 1) which HSCPs would want to use the system, 2) for which care recipient they requested it, and 3) for which reasons. Methods A multiple embedded case study utilizing mixed methods was conducted across 3 healthcare establishments in Quebec, Canada. Descriptive statistics from surveys and medical records was conducted to describe the profile of HSCPs and their care recipients. An inductive qualitative analysis was carried out through interviews with 23 HSCPs, in charge of 31 care recipients, to deepen our understanding of the reasons why they requested the system. Results HSCPs were primarily women (89%) occupational therapists (43%). Home care recipients were also primarily women (74%), with documented refusal of homecare services (65%), diagnosed with cognitive decline (94%), and living in a single-family home or apartment (68%). Overall, interviews revealed HSCPs challenges in getting the necessary information to assess their care recipients needs, despite the presence of in-home services and other strategies in place (e.g. informal carer support). Moreover, the telemonitoring system was perceived as promising for risk management. Conclusions There is an interest for the use of ADL telemonitoring technology in the delivery of home healthcare services for aging in place. Key messages • To facilitate its integration in practice, we explored the need for, and value of, ADLs telemonitoring technology by health and social care professionals (HSCPs) in real-life contexts. • By studying the integration of innovative technologies in home healthcare practices, such as ADLs telemonitoring, we aim to support HSCPs practice in fulfilling older adults desire to age in place.

Training for migrant live-in care workers in Austria: results from an online survey

Abstract Background In Austria, almost 60.000 migrant “24-hour” live-in caregivers work in two- or four-week shifts, travelling between Austria and their countries of origin (mostly Romania, Slovakia, Croatia, Hungary and more) to care for frail older people at home. As opposed to other social and healthcare professions, live-in care workers do not require any formal training at all to be able to work in Austria. Methods With the aim of gaining an in-depth insight into the working conditions of live-in caregivers and with the aim of recording their problems and needs, an online survey including 40 questions was conducted from 15 July to 15 September 2023 in four languages (Slovak, Romanian, Bulgarian and German). The study is part of the MigraCare project which focuses on improving working and living conditions for migrant live in care workers. Results Results show that many live-in caregivers are not fully aware of their job profile: what are nursing and medical tasks they are only allowed to do when delegated by professional healthcare staff? Most respondents have to take on tasks that are outside their job profile. Many state that it is difficult to care for people with dementia. In addition, some caregivers report physical and psychological violence and sexual harassment. Most wish for training possibilities regarding topics like dementia, communication with client and family, legal framework regarding their job in the long-term care sector and others. Conclusions Live-in care workers wish for continuous education activities and for a better relationship with the family relatives and the care recipient. Based on the results of the survey short multilingual training videos have been developed easily accessible on a video platform for live-in care workers. Also, a connection to community nurses has been established in order to improve communication between care recipient, family members and live-in care workers. Key messages • Results from an online survey show that live-in care workers face challenges at work which are partly due to an unclear job profile as well as communication problems with the care recipient. • Results of an online survey show that live-in care workers wish for education and training opportunities (mother tongues) in the field of dementia care, communication with family or legal framework.

How to improve informal caregiver’s quality of life and health literacy? – a NGT approach

Abstract Background Previous studies revealed that informal caregivers have a large number of unmet needs, reinforcing the necessity of national policies that ensure an adequate sustainability of the provision of informal care and takes into account the needs of caregiving dyads in the planning process. This study aimed to identify and consensualize initiatives and action strategies to improve the Portuguese Informal Caregiver’s reality and health literacy levels. Methods A Nominal Group Technique (NGT) was conducted with 10 experts. The NGT panel was asked about feasible action strategies to improve informal caregiver’s reality, consensualized and voted them according to perceived relevance in a semantic differential (1 pts to nothing relevant and 6 pts to very relevant), allowing a score calculation. Results Thirty-two initiatives emerged from the NGT. The five most relevant initiatives were identified based on an average score namely: 1) Pressure political decision-makers on the need for an effective implementation of the Informal Caregiver status, which is not being done (score=56); 2) Creation of a specific emergency social line for informal caregivers, as a measure of greater equity (score=52); 3) Raise employers awareness about caregiving demands (score=52); 4) Creation of a proximity social manager, linked to primary care services, that facilitates caregiver connection to health and social care services (score=51); 5) Decentralization of respite care services support, with multidisciplinary teams (score=49). Conclusions The informal caregiver’s role needs to be recognised and understood by healthcare and social care providers. (Re)design political, economic and social policies that address both caregiver and care recipients’ needs is critical to enable the continuity of informal care provision. Key messages • Informal caregivers play a fundamental social role but still have many needs to be addressed, particularly at the level of the official definition of their role. • (Re)design political, economic and social policies targeted to informal carers is imperative to enable the continuity of informal care provision.

Using Unsupervised Learning Methods to Explore the Trajectory of Long-Term Care Service in Taiwan

Abstract Background Understanding the temporal trends in long-term care (LTC) utilization enables more effective planning by government and service providers. This study employed machine learning methods to explore LTC utilization trajectories among care recipients in a southern county of Taiwan. Methods Administrative data from the government-funded LTC programme was utilized, with a total of 24,614 participants included after excluding those with less than six months of data. Daily service utilization records, mainly focusing on caregiving services, were aggregated, and the number of days each participant used LTC services within every 30-day period post-application was calculated. Utilization rates during 6 and 12 months post-application were separately analyzed. K-means clustering, an unsupervised machine learning method, was employed to select the optimal classification and identify LTC utilization trajectories using 10-fold cross validation. Temporal frequency variations of each caregiving service within each trajectory group were visualized using heatmaps. Results In the analysis of LTC utilization within the first 6 months post-application, trajectories were classified into 7 groups; while within 12 months, trajectories were divided into 4 groups. These trajectories can be categorized into 4 distinct patterns: High-Stable (6 mo: 21.3%; 12 mo: 35.7%), Low-Stable (6 mo: 33.1%; 12 mo: 37.2%), High-Decrease (6 mo: 12.8%; 12 mo: 10.7%), and Low-Increase (6 mo: 32.7%; 12 mo: 16.5%). We further explored differences in socio-demographic characteristics and needs factors among trajectory groups. Heatmaps were used to illustrate temporal variations in the utilization rates of specific service items, which played a significant role in determining the trajectories. Conclusions K-means clustering is useful in identifying distinct patterns among LTC users. Tailored service delivery strategies can be designed to meet the diverse needs of these different user groups. Key messages • The unsupervised machine learning method distinguished various temporal dynamic patterns in LTC utilization. • Tailored service delivery strategies can be designed to meet the diverse needs of these different user groups.

Living alone and care levels’ distribution in first-time recipients of long-term care in Germany

Abstract Background As demographic shifts occur, along with longer life expectancies and advancements in medical care, there is a noticeable rise in the population requiring long-term care. In Germany, the Medical Service oversees the assessment for long-term care needs, which specifically evaluates the extent of limitations in maintaining independent living. These limitations are categorized into care levels ranging from 1 (indicating minor limitations) to 5 (denoting the most severe limitations). Methods Data from the long-term care assessment conducted nationwide in Germany are utilized for the analysis presented. The study focuses on individuals aged 60 and above with a first-time recognition of need of long-term care. Descriptive analysis is conducted on the distribution of care levels and living arrangements. Results The analysis encompassed 339,486 individuals, with an average age of 79.6 years (standard deviation: 8.4), of whom 59.0% were female. Approximately half of the sample were categorized under care level 2, while 32.4% fell into care level 1. Higher care levels (3-5) were less frequent (16.2%, 4.8%, 1.7% respectively). Individuals living alone were predominantly found in the lower care levels, whereas those not living alone were more commonly represented in care levels 3-5. Additionally, older individuals were more frequently assigned higher care levels. Conclusions Over 75% of initial applicants are classified within the lowest care levels (1 and 2) with a higher proportion of those living alone. One possible explanation is that within partnerships, the presence of a partner may serve as a form of support during the early phases of long-term care, with external assistance becoming necessary only as care needs escalate to higher levels. Further research should focus on examining the role of living alone in the need for long-term care. Key messages • Initial applicants of long-term care in Germany living alone are more often classified in lower care levels (indicating minor limitations) than in higher care levels (indicating severe limitation). • Partnerships may delay higher long-term care needs; research should explore living alone’s impact on long-term care.

Abstract Strengths and difficulties Lithuania

Abstract Background Most mental health disorders begin before the age of 18, peaking at 14.5 years (Solmi, 2022) and manifest as emotional and behavioural difficulties that are more frequent in institutional social care (ISC): former foster care recipients have higher rates of depression and PTSD than the general population (Pecora, 2009). The rate of children living in residential care facilities in Europe and Central Asia is double the global average (UNICEF, 2024). This study aims to assess and compare the mental health of children in ISC centers and regular high schools. Methods A cross-sectional study was conducted in ISC centres and high schools in 2022-2023. The sample size consisted of children aged 11-17 living in ISC (n = 49) or in families (n = 193). Online anonymous survey was applied to assess the prevalence of endured violence, substance use and measure mental health outcomes using the Strengths and Difficulties Questionnaire (SDQ-25). Results A total of 242 respondents (age mean 14.6, SD = 2.12) in ISC and families showed similar poor mental health rates (42% and 44%, respectively). Prosocial behaviour problems were exhibited more by boys (p < 0.05), whereas emotional symptoms were more common in families (p < 0.001): 90% normal SDQ-25 scores in ISC vs 60% in families. Enduring psychological (38% vs 60.2%) violence was more prevalent among children in families (p < 0.05); smoking - in ISC, alcohol use - in families (p < 0.05). In both groups enduring physical violence was associated with smoking and alcohol use (p < 0.05), and overall poor SDQ-25 results strongly correlated (p < 0.001, r = 0.815, r = 0.610, respectively) with hyperactivity. Conclusions A significant part of study participants reported poor mental health outcomes with most problems in relationships with peers. Mental health risk factors such as violence or substance abuse are associated with poor emotional wellbeing while being more common among children living with families. Key messages • Children living in ISC and in families demonstrate similar level of mental health problems. • Varying prevalence of substance abuse among children living in different settings highlights the importance of environmental factors when addressing the issue.

AAL for independent aging: Practical guidelines for smart living environment development

Abstract Background Active Assisted Living (AAL) refers to the use of IoT devices to support quality of life, independence, and healthier living for care recipients. AAL-enabled smart homes have particular potential to help older adults reach their health and independent living goals, but there is a dearth of guidance on practical implementation. Additionally, different technology companies have each developed their own practices, leading to confusion and inconsistency. The objective of this work is to explore requirements for use of AAL in smart living environments for older adults, providing suggestions for best practice for AAL use considering their unique circumstances. Methods A review of academic and grey literature was performed to identify existing best practices and gaps for development of AAL-enabled environments. A technology review was also performed on 156 unique devices to understand the AAL tech ecosystem. Results Little guidance exists regarding designing smart living environments for older adults, though it exists for the two elements separately. The distinguishing elements are how AAL may connect the older adult to their care network, how the home may accommodate changing health needs, and older adults’ unique vulnerability. Furthermore, a large issue is a lack of interoperability and communication, which must be addressed in order to make AAL systems as low-effort and aligned with older adults’ preferences as possible. Conclusions As both tech and older adults’ needs evolve, key requirements of AAL-enabled smart living environments are robust data sharing pathways, planning for modifiability, and protecting the privacy of residents. The findings of this work will be used to identify opportunities for AAL standards development. Key messages • AAL-enabled smart homes must be able to accommodate an older adults’ shifting care needs and preferences over time. • It is necessary to establish how AAL smart home data may be shared with and used by care partners and providers.

Young carers in Ghana: caring activities, ways into care and the impacts of caregiving

ABSTRACT In Ghana, children often provide care and support to family members with disabilities, mental illnesses and other health conditions. Understanding the nature of their caring activities is essential for identifying stressors and promoting better health and wellbeing outcomes for this group of children, described in the wider literature as young carers. This qualitative study investigated the nature and impact of caring activities on young carers aged 11–17 years. The findings revealed that young carers provide domestic, financial, medical and personal care. Caring activities while beneficial, result in a double burden, as young carers often support both the care recipients and their dependents. Despite the challenges associated with caring activities, the study also reveals the myriad reasons young carers enter care work, suggesting that the work of young carers is not simply an obligation or a choice but a process and an integral part of Ghanian family structures. The study highlights the urgent need for formal mechanisms to identify and support young carers and their care recipients in Ghana.

Delineating Care Recipient Burden Constructs: Development and Validation of the CARE-2B Scale for Care Recipient Self-Perceived Burden and Proxy Assessment of Caregiver Burden.

Care Recipient Self-Perceived Burden (CR-SPB) to Caregivers is an important but overlooked aspect within the caregiver-care recipient relationship. This study aimed to 1) develop and validate the CARE-2B (Care Recipient's Two Burden) Scale, assessing both CR-SPB and their proxy assessment of caregiver burden (Proxy-CB); 2) examine whether the CR-SPB and Proxy-CB differ from caregiver burden's own assessment and other health and social care constructs. Data were collected from 504 caregiver-care recipient dyads in the US using an online panel between August 2022 and February 2023. Care recipients completed the CARE-2B Scale, which includes two subscales: their self-perceived burden (CR-SPB) and their proxy assessment of caregiver burden (Proxy-CB). Care recipients also completed measures related to health, well-being: SPB-scale, EQ-5D-5L, and EQ-HWB. Caregivers completed CarerQoL and ASCOT-Carer. Psychometric analysis included exploratory and confirmatory factor analysis, item response theory (IRT), and construct validity. CR-SPB correlated strongly with the SPB-Scale (r=0.73), while Proxy-CB correlated more strongly with caregiver-reported burden (r=0.61). Both CR-SPB and Proxy-CB items demonstrated good discrimination and information coverage in IRT analysis. EFA further supported the distinctiveness of CR-SPB and Proxy-CB, with CR-SPB items loading on a separate factor from caregiver burden and health constructs, while Proxy-CB aligned with caregiver-reported burden. The CARE-2B Scale innovatively assesses both CR-SPB and Proxy-CB from the care recipient's perspective, providing new insights into the caregiving relationship. This dual-perspective measure has implications for enhancing care strategies for individuals with chronic conditions or disabilities and their caregivers.

Humans: An integrative review exploring dehumanisation in advanced dementia.

Background: People living with advanced dementia risk being seen as someone without personhood in contemporary societies, an understanding that has been described and challenged for decades in dementia scholarly literature. Such perception can be characterised as forms of existential dehumanisation, which still asserts itself in dementia care practices, adversely affecting the ethical and caring aspects of such care.Aim: To challenge dehumanisation in dementia care, we must first learn to recognise what foster it in caring relations. Thus, the aim of our study is to identify existing perceptions of care recipients living with advanced dementia, which elicit dehumanising attitudes among formal caregivers.Research design: We conducted an integrative review based on Whittemore and Knafl's updated methodology. This allowed us to identify and analyse 26 articles incorporating both qualitative- and quantitative studies as well as theoretical- and grey literature all describing perceptions of care recipients living with dementia that lead to dehumanisation.Ethical considerations: Studying the darker sides in caring relations was to be beneficial in improving dementia care practices.Findings: Through an analytical process five themes that can sprout dehumanising attitudes in caring relations were identified, which include perceiving people living with advanced dementia as (1) absurd, (2) shadow, (3) perilous, (4) void, or (5) repugnant. We argue that these perceptions can be seen as unintentional and stem from a misled embodied perception, which caregivers should learn to recognise and consequently be able to resist through virtue ethics.Conclusion: Our study indicates that challenging dehumanisation is a practical matter of identifying and reacting in a timely way to ones misled embodied perceptions. We suggest the five themes offer a potential means to warn formal caregivers of impending dehumanising attitudes and help them to review how they ethically are thinking and perceiving the person living with advanced dementia.

Examining Factors That Contribute to Poststroke Depression Within the Family Caregiver and Care Recipient Dyadic Experience

Purpose: Stroke survivors often experience biochemical changes in the brain. This decreases the ability to experience positive emotions. Stroke survivors contend with the loss of their former self and are often left with residual physical, cognitive, communicative, and psychological changes leading to a depressive state. With an increasing number of stroke survivors returning to the community, informal care provided by family members will continue to rise. Many of the challenges faced by stroke survivors with poststroke depression (PSD) and by family caregivers (FCGs) have a significant impact on the relationship itself. With the goal to obtain insight into potential contributing factors to poststroke depressive features in stroke survivors, this qualitative research study aimed to investigate the experiences, behaviors, and perceptions of participants with PSD living in the dyadic relationship between FCG and stroke survivors. Method: Six FCG–stroke survivor care recipient dyads served as the participants. All stroke survivor care recipients were diagnosed with or had signs and symptoms of depression poststroke. Semistructured interviews were conducted with stroke survivors within each dyadic relationship. All participants were within this dyadic relationship for at least 3 months. Results: Six themes emerged from the stroke survivors. The findings indicated that grieving of the former self, lack of self-efficacy, isolation, difficulty with communication, perceived stress of the FCG, and lack of depressive coping skills are factors that contribute to PSD. Conclusions: There were multiple factors experienced by stroke survivors within the dyad affecting their emotional state and leading to or exacerbating depressive symptoms. Additionally, stroke survivors have limited coping strategies for depressive symptoms. Stroke survivor informational counseling, training, and education may improve coping strategies and decrease symptoms of depression and therefore lead to strengthened rehabilitative outcomes. Supplemental Material: https://doi.org/10.23641/asha.27156381

‘I worry about you more’: insights from older care recipients’ experiences during the Israel-Hamas war

Objectives This study explored the experiences and challenges of older adults with functional disabilities in Israel during the ongoing Israel-Hamas war, particularly those receiving care from migrant live-in carers. The main objectives were to identify their main concerns and coping strategies during this period. Method A qualitative methodology was employed, involving face-to-face interviews with 13 older adults (mean age 91.33, SD = 5.31). All participants liveded in separate housesholds with the assistance of migrant live-in carers. They were recruited through purposive and snowball sampling techniques. The interviews were analyzed using thematic content analysis. Results Two main themes emerged from data analysis: 1) Concerns for others affected by the war and concerns for oneself, and 2) Coping strategies, including utilizing personal resources such as optimism and distraction, seeking connections with family members and carers, and contributing to the community. Conclusion The study highlights the interplay between the vulnerabilities and strengths of older adults during wartime. Their ability to mobilize both internal and external coping strategies reflects an active approach to managing the stress and uncertainties of war, underscoring their resilience and agency and challenging the perception of older adults as passive recipients of care.

Effect of a single-session mindfulness-based intervention for reducing stress in family caregivers of people with dementia: study protocol for a randomized controlled trial

BackgroundCaregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress.Methods/DesignThe study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods.DiscussionThe study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia.Trial registrationClinicalTrials.gov, NCT06346223. Registered on April 3, 2024.

Narratives of Personhood and Caregiving in Ontario Long-Term Care Homes During COVID-19

Drawing on narratives recorded from family members of residents in long-term care homes in Ontario, Canada, during the 2020 COVID-19 lockdown, in this paper, I present a two-pronged argument. First, following Taylor (2008) and Seaman (2018, 2020) I suggest that family caregiving for residents of long-term care homes helps to sustain residents’ personhood: the recognition of their identity as an ongoing participant in their social universe. The second part of my argument is that caregiving is a multifaceted and paradoxical endeavour. While caregiving can be a transformative and reciprocal practice of self-actualization (cf. Kleinman 2012; Kleinman and van der Geest 2009), at times it can also be troubled, ambivalent, and stressful (Cook and Trumble 2020). At its best, caregiving is a two-way street, enabling the maintenance of personhood for the care recipient, and validating the caregiver’s sense of ‘moral agency,’ or what medical anthropologist Neely Myers (2015, 13) defines as the capacity to be recognized in one’s local sphere as a good person who can make intimate connections to others. When caregiving goes awry, however, it leads to frustration, despair, and a sense of moral failure for the caregiver. For the care recipient, non-recognition and the loss of personhood can lead to social death and may also hasten physical decline. I conclude that for both professional and family caregivers of long-term care residents, systemic improvement of social and material support is needed to mitigate the challenges inherent in the recognition of personhood in caregiving relationships.

Electrocardiogram and respiration recordings show a reduction in the physical burden on professional caregivers when performing care tasks with a transfer support robot

ABSTRACT In this study, we assessed the physical burden on professional caregivers when using a transfer support robot, “Hug,” to transfer and move a care recipient. We compared heart rate (HR), heart rate variability (HRV), and the time-series synchronization between HRV and respiration in caregivers using the robot or a normal wheelchair as control. Under both conditions, a commercial wearable device was used to simultaneously obtain electrocardiogram and respiration signals while performing care tasks, which comprised transfer from a bed to a wheelchair or to the robot, movement to a remote location, and transfer to a chair. We found that HR was significantly higher and HRV and wavelet coherence were significantly lower in the control than with Hug during at least the first 30 seconds of rest after the task (p < 0.05). This suggests that Hug could reduce the increase in HR and thereby maintain a more constant rhythm between HRV and respiration during care tasks. A post-task questionnaire also revealed that caregivers felt the physical burden of the tasks was reduced using Hug. Our results suggest that the introduction of transfer support robots can reduce the physical burden for caregivers of daily transfer assistance tasks.

Perceptions about dementia clinical trials among underrepresented populations: a nationally representative survey of U.S. dementia caregivers

BackgroundThe research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient’s clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners.MethodWe embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression.ResultThe sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p = < 0.001). In the reasons model, the rated importance of a social responsibility to help others by participating in research was significantly associated with participation (OR = 1.56, p = 0.049), while the importance of the possibility of the care recipient experiencing serious side effects was negatively associated with participation (OR = 0.51, p = 0.003). In both models there was no significant difference in hypothetical participation between non-Hispanic Black and non-Hispanic White caregivers, or between Hispanic and non-Hispanic White caregivers.ConclusionHispanic and non-Hispanic Black dementia caregivers were not less likely than non-Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups but may instead reflect structural barriers and historic exclusion from trial participation.

Factors Influencing Meal Provision and Dietary Support Behaviour of Caregivers of People with Chronic Kidney Disease: A Cross-Sectional Study.

Caregivers play an important role in supporting care recipients to navigate their health needs, including adherence to dietary recommendations, which are complex and multifaceted. This study aims to (i) describe the nutrition knowledge of caregivers of people with chronic kidney disease (CKD), and (ii) explore caregivers' perceptions of their role in providing healthy meals and nutrition support for care recipients. A cross-sectional study design employed a multi-strategy research approach. Caregivers (n = 78) of people with stage 1-5 CKD or post-transplant were recruited from a single centre. Their nutrition knowledge was assessed quantitatively with the revised General Nutrition Knowledge questionnaire. Theory-informed semi-structured interviews of a sub-sample (n = 12) qualitatively explored caregiver perceptions. Most caregivers were female (75.6%) and cared for a male care recipient (87%; aged 74 (66; 80) yrs.). The caregivers (75.6%) provided a meal ≥6 times/week to their care recipient and had moderate nutrition knowledge (66.1 (60.5; 73.9)%). Four themes emerged describing the caregivers' perceptions of meal provision and nutrition support, including the following: (i) food literacy skills are valued; (ii) social support is important; (iii) caregivers' sense of social responsibility; and (iv) the management of complex and multifaceted dietary needs. The caregivers had moderate nutrition knowledge; they wanted to provide healthy meals and support to their care recipients to adhere to dietary recommendations. Targeted, co-designed nutrition education programs for caregivers may enhance nutrition care delivery to people with CKD.

“It’s a delicate dance” How informal caregivers experience the role and responsibilities of supporting someone living with a lower-grade glioma

Abstract Background People with lower-grade gliomas (LGG) often require long-term support with a condition that causes substantial symptom burden and is likely to progress. Partners, family, and friends often become informal caregivers (IC), but the types of support they provide, and their experiences of this, has not been well investigated. We aimed to understand how ICs experience the role and responsibilities of supporting people with LGG. Methods This descriptive qualitative study used semi-structured interviews to explore the role and responsibilities of a purposive sample of ICs across the United Kingdom, who currently, or in the past five years, support(ed) someone with an LGG. Interviews were audio-recorded and transcribed, and an inductive thematic analysis was conducted. Results Nineteen ICs were interviewed (mean age 54.6 years; 5 males/14 females). While most participants spoke about ‘Being a ‘carer’’, the level of care provided varied. Participants conveyed their experiences with ‘Adjusting for cognitive difficulties’, ‘Emotional protection’, ‘Supporting participation in daily life’, and ‘Healthcare advocacy’. ICs often felt ‘abandoned’ by healthcare services to provide required care themselves, and reported experiences with ‘Balancing the challenges of caregiving’, including conflict with work/childcare. Issues around ‘Maintaining the care recipient’s independence’ were interwoven throughout. Conclusions ICs of people with LGG provide wide-ranging support to help manage the consequences of the illness. Consideration of ways to help ICs with the challenges of fulfilling this role, particularly, balancing support provision without inhibiting the care recipient’s independence, could help improve outcomes for ICs and people with LGG.