Relational Practices in Arts-Based Research

Older adults may experience a wish to die in the context of deteriorating health, a loss of autonomy, loneliness, or depression. Home care workers may likewise experience burden or symptoms of depression as a result of prolonged contact with this physical and emotional suffering. Training initiatives that can support the well-being of home care workers are therefore important. To describe the typical profile of older adults who express a wish to die to their home care worker, and to examine whether a psycho-educational intervention for care workers exploring the end-of-life process and self-care strategies had an impact on the older adult's wish to die and on the care worker's perceived burden and depressive symptoms. Quasi-experimental, longitudinal study involving non-randomized experimental and control groups and follow-up at 3-6 months post-intervention. At the start of the study, all care workers (n = 126) provided sociodemographic information (age, gender) for themselves and the care recipient, and completed the Karnofsky Performance Status scale and the Assessment of the Frequency and Extent of the Desire to Die (AFEDD) interview to provide a baseline measure of the care recipient's functional status and wish to die. They also completed the Beck Depression Inventory (BDI) and Zarit Burden Interview (ZBI) as a measure of their own perceived burden and depressive symptoms. The AFEDD, BDI, and ZBI were completed again by care workers at 3 and 6 months post-intervention. The typical profile of care recipients was a woman aged 85.5 years who required considerable support and assistance and who had at least occasionally experienced a wish to die, although these thoughts were not always verbalized. Scores on the AFEDD remained relatively stable over the follow-up period in both the control and experimental groups. There was no significant association between the older adult's wish to die and depressive symptoms in the care worker across the study period. However, a positive and significant correlation between a wish to die in the older adult and perceived burden in the care worker was observed at 6 months post-intervention in both the total sample (p = 0.032) and among controls (p = 0.028). By contrast, this significant association was not found for care workers in the experimental group (p = 0.376), suggesting that the psycho-educational intervention may have had a protective effect. Although further studies are needed to corroborate and extend these findings, the results suggest that psycho-educational interventions aimed at increasing home care workers' understanding of the end-of-life process and which introduce them to self-care strategies may help to reduce their perceived burden when the older person for whom they are caring expresses a wish to die. Home care workers may find it challenging to care for an older adult who expresses a wish to die. Psycho-educational interventions that enhance care workers' understanding of the end-of-life process and teach them self-care strategies could help to support their well-being and their ability to provide adequate care.

Engagement in the arts has been shown to improve health and well-being in older adults. However, previous research suggests that some older adults may experience barriers to arts engagement, such as health concerns, cost, and lack of transport. One method to address these potential barriers for older adults is virtual arts programming. The purpose of this study was to determine older adults’ satisfaction with a six-week virtual art kit pilot program, as well as to examine how participation in the program affected participants’ health and well-being. The program involved participants receiving an art kit via mail with the supplies and instructions needed for each weekly project (e.g., scarf dying, affirmation weaving). Participation in weekly classes delivered via video conferencing and a social media group was encouraged. A total of 285 community-dwelling older adults completed both the pre- and post- surveys (96.1% female; 91.9% between the ages of 55 to 74). Analyses revealed high satisfaction with the program. Participants significantly improved from before to after the program on creativity, sense of community, purpose, stress, life satisfaction, and attitudes toward aging. There was no significant change in sense of mindfulness, loneliness, nor self-reported mental and physical health. This study provides evidence for the positive impact of a virtual art kit program on multiple aspects of well-being for older adults. Given the importance of accessibility in arts engagement, future research should continue to examine virtual arts programs as a method to enhance well-being.

To face the challenges of an ageing population, many Western countries nowadays stimulate an ageing in place policy to empower older adults to grow old in their own homes with the highest degree of self‐reliance. However, many community‐living older adults experience limitations in (instrumental) activities of daily living ((I)ADLs), which may result in a need for home‐care services. Unfortunately, home‐care workers often provide support by taking over tasks, as they are used to doing things for older adults rather than with them, which undermines their possibilities to maintain their self‐care capabilities. In contrast, reablement focuses on capabilities and opportunities of older adults, rather than on disease and dependency. Consequently, older adults are stimulated to be as active as possible during daily and physical activities. The 'Stay Active at Home' programme was designed to train home‐care workers to apply reablement in practice. To explore the experiences of home‐care workers with this programme an exploratory study was conducting in the Netherlands, between April and July, 2017. In total, 20 participants were interviewed: nine nurses (including a district nurse), 10 domestic support workers and the manager of the domestic support workers. The semi‐structured interviews focused on the experienced improvements with regard to knowledge, skills, self‐efficacy and social support. Furthermore, the most and least appreciated programme components were identified. The study has shown that home‐care workers perceived the programme as useful to apply reablement. However, they also need more support with mastering particular skills and dealing with challenging situations. Future implementation of the 'Stay Active at Home' programme can potentially benefit from small adaptions. Furthermore, future research is needed to examine whether the programme leads to more (cost‐) effective home care.

I write this review as a recommendation for potential readers: those who are new to and veterans with respect to arts-based research. Arts-Based Research in Education: Foundations for Practice is edited by Melisa Cahnmann-Taylor and Richard Siegesmund, with contributions from 22 authors and a cover artist. In addition to providing some information from a usual structure around contents, central themes and concepts, intended audience, genres of writing styles, strengths and weaknesses, and uniquenesses, I primarily focus on the content of the chapter entitled “Four guiding principles for arts-based research practice” which I found extraordinarily significant in the second edition of this book and most meaningful for those planning their arts-based research projects.

The present study evaluated the measurement invariance of a 7-item scale designed to assess elder neglect across three groups of informants: Older adults, family members, and home care workers. In addition, differential item functioning (DIF) was evaluated in order to examine whether individuals of certain characteristics have a different probability of endorsing certain items even at equivalent levels of the overall construct of neglect. A cross-sectional sample of 686 family members, 388 older adults, and 523 home care workers was drawn. A series of sequentially nested confirmatory factor models was examined to identify whether configural (the same items are associated with the same factor across groups), metric (factors have a similar meaning across groups), and scalar (group means can be meaningfully compared across groups) invariances can be established. Multi indicators multi causes analysis was conducted to identify DIF across age, gender, and education. Five items were adequate indicators of the overall construct. The findings provide support to configural, metric, and scalar invariances across the 3 groups of informants. None of the items resulted in DIF. The findings advocate for the use of the 5-item neglect scale across different groups of informants and call for the evaluation of elder neglect within the constellation of the caregiving unit.

Home care workers (HCWs) have played a critical role in keeping homebound older adults safely at home during COVID-19, yet their essential work is often understudied. This study characterized the roles of HCWs during COVID-19 and examined how HCW service disruptions impacted patients and their caregivers. We performed a thematic analysis of medical records from 53 patients with HCWs in a home-based primary care practice in New York City. We abstracted unstructured clinical notes into a priori and emergent categories and identified core themes via team discussion. The following themes emerged: 1) Shifts to remote medical care and changing patient needs led to task shifting and new tasks for HCWs (i.e. getting food for patients experiencing food insecurity), 2) The risks associated with HCW tasks, such as exposure from caring for patients with COVID-19, increased during the pandemic, 3) Patient and family refusal of HCW services to avoid COVID-19 exposure as well as abrupt loss of HCW services due to HCW precarity or COVID-19 exposure left family caregivers with additional caregiving responsibilities, 4) Regulations surrounding return to work following COVID-19 exposure created additional difficulties in reinstating HCWs and left patients without adequate care, putting them at risk of hospitalization. In conclusion, pandemic-related disruptions created barriers to adequate home care, putting both patients and caregivers at risk. This analysis suggests a need for more robust HCW training and established regulations to protect HCW safety as well as a need for policies to support caregivers and ensure continuity of care during emergencies.

This pilot study examined the feasibility of delivering internet-based cognitive behavioral therapy (iCBT) to homebound older adults with symptoms of depression who are recipients of non-medical home care. A feasibility open trial was conducted in the homes of homecare older adults (n=26). When possible, home care workers (HCWs) of older adults (n=13) were recruited to provide external support for iCBT usage. In cases where consistent assistance from the same HCW was not feasible, participants were given the choice of working on the program on their own (n=7) or receiving assistance from a research assistant (RA) (n=6). The mean therapy sessions completed was 4.7 out of 8 total sessions. The mean satisfaction rating was 7.7 (SD=2.9) and 86% would recommend the program to others with depressed mood. Significant reductions in depressive symptoms and anxiety symptoms and improvement on a quality of life measure were observed at post-test. The RA-supported group tended to have the best adherence, satisfaction, and reduction in depressive symptoms, followed closely by the HCW-supported group. The self-guided group had the lowest adherence, satisfaction, and symptom reduction. iCBT is a feasible and acceptable treatment modality for homebound older adults with depressive symptoms and potentially effective. Data from the participant exit interviews suggest a need for refining the existing treatment platform to better meet the needs and capabilities of homebound older adults. Future studies are warranted to examine treatment effectiveness as a function of HCW support.

Chinese older adults face many barriers to healthy aging in community, such as increased financial burden, threatened place security, limited accessibility to medical services, language and transportation difficulties, daily housework and repairs challenges, etc. This systematic review aimed to examine and report the results current scholars have published in journal articles in the last decade (2010-present) on the influence of culture on Chinese older adults aging in community. Combination terms of “aging in community or aging in place,” “Chinese,” and “culture or cultural or ethnicity or identity or values” were used when searching in the four databases: CINAHL Complete; ERIC; MEDLINE; and PsycInfo. Researcher examined abstracts of all journal articles retrieved using the above criteria and further determined their relevance for inclusion. A total of 38 journal articles were included. Findings suggest that aging in community reflects a changing policy tendency from institution-based to community-centered care which better responds to the needs of the growing Chinese senior population. Family care remains older adults’ preferences. However, individual, community, and larger contextual factors can be influenced, such as the number of adult children in the household, education level, residential area, accessibility to healthcare facilities, perceived cultural values of filial piety, state-owned enterprise reformation, and the one-child policy in China. Policymakers are encouraged to promote older adults’ personalized care plans; comprehensive health insurance coverage; constructive social/community environments (e.g. community parks or community open spaces for age-friendly activities); home care support, or smart home technologies for regular health monitoring.

Most older adults prefer to age in place, which for many will require home and community care (HCC) support. Unfortunately, HCC capacity is insufficient to meet demand due in part to low wages, particularly for personal support workers (PSWs) who provide the majority of paid care. Using Ontario as a case study, this paper estimates the cost and capacity impacts of implementing wage parity between PSWs employed in HCC and institutional long-term care (ILTC). Specifically, we consider the cost of increased HCC PSW wages versus expected savings from avoiding unnecessary ILTC placement for those accommodated by HCC capacity growth. The expected increase in HCC PSW retention would create HCC capacity for approximately 160,000 people, reduce annual health system costs by approximately $7 billion, and provide an 88 per cent return on investment. Updating wage structures to reduce turnover and enable HCC capacity growth is a cost-efficient option for expanding health system capacity.

BackgroundDepression is common among homebound older adults. Internet-based cognitive behavioral therapy (iCBT) is a promising but understudied approach for treating depression among older adults with disabilities.ObjectiveThis study aims to understand the experiences of homebound older adults who participated in a pilot feasibility trial of an iCBT for depression.MethodsThe participants included 21 homebound older adults who participated in a generic iCBT program that was not specifically designed for older adults and 8 home care workers who assisted in the iCBT program. Informants completed semistructured individual interviews, which were transcribed verbatim and analyzed using methods informed by grounded theory. A hierarchical code structure of themes and subthemes was developed after an iterative process of constant comparisons and questionings of the initial codes. The data analysis was conducted by using dedoose, a web app for mixed methods research.ResultsThree themes and various subthemes emerged related to participants’ experience of the iCBT intervention, as follows: intervention impact, which involved subthemes related to participants’ perceived impact of the intervention; challenges and difficulties, which involved subthemes on the challenges and difficulties that participants experienced in the intervention; and facilitators, which involved subthemes on the factors that facilitated intervention use and engagement.ConclusionsiCBT is a promising intervention for homebound older adults experiencing depression. Home care workers reported improved relationships with their clients and that the program did not add a burden to their duties. Future programs should involve accessible technical features and age-adapted content to improve user experience, uptake, and adherence.Trial RegistrationClinicalTrials.gov NCT04267289; https://clinicaltrials.gov/ct2/show/NCT04267289

Medicaid Home and community-based services (HCBS) and home-based clinical care (i.e., Medicare home health care) aim to support independence and well-being in the community, especially for older adults living with disability and complex health conditions, such as dementia. Many older adults receive both Medicaid HBCS and home-based clinical care, often concurrently, with services coordinated and delivered by paid and unpaid care partners including care managers, home care workers, and family caregivers. Amid concerns related to workforce shortages, shifting payment policies, and the rising complexity of those aging in place, there have been recent calls to better support the workforce providing care in the home. Responding to these calls will require additional knowledge and understanding of the experiences of workforce members as well as the older adults they serve. This symposium presents four unique studies that describe: 1) experiences of care managers (“supports planners” in Maryland) serving older adults with and without dementia in Medicaid HCBS in Maryland; 2) unmet caregiving needs in a national sample of Medicare home health patients living with dementia; 3) Medicare home health clinician perspectives on supporting dementia caregivers through health information technology, and 4) home care worker attitudes about delivering person-centered care for persons living with dementia. The findings presented reveal current areas of challenge and inform the development of innovative strategies to better support the range of paid and unpaid caregivers caring for older adults living with dementia in the community.

With the rapid increase of older adults, attracting and retaining home care workers in the long-term care system will be critical to meet demands. This study examined how intrinsic and extrinsic factors of job satisfaction affect home care workers’ intention to stay and determined whether ageist attitudes had a mediating effect on the relationship between job satisfaction and intention to stay. The stratified random cluster sampling method was applied in this study and self-administered questionnaires were distributed to 400 home care workers from home service units in one city in southern Taiwan. Overall, 380 participants completed the measures of job satisfaction, ageist attitudes, and intention to stay in their current job. The monthly wages of NT$30,000 to NT$39,999 were significantly related to home care workers’ intentions to stay. Both intrinsic and extrinsic factors of job satisfaction were significantly associated with the retention of home care workers. However, the ageist attitudes’ separation and affective attitude factors were mainly related to their intention to stay. Ageist attitudes have a significant mediating effect between the intrinsic factors of job satisfaction and intention to stay but have no significance for extrinsic factors. Therefore, we suggested that improving the extrinsic and intrinsic factors of job satisfaction could increase the retention of home care workers. Additionally, providing accurate aging-related knowledge to raise awareness of ageist attitudes may enhance the relationship between the intrinsic factors of job satisfaction and retention. These findings could be valuable for improving the retention of the workforce in long-term care.

BackgroundThe beneficial effects of physical activity (PA) for older adults are well known. However, few older adults reach the health guideline of 150 min per week of moderate-to-vigorous PA (MVPA). Electronic health (eHealth) interventions are effective in increasing PA levels in older adults in the short term but, rarely, intermediate-term effects after a period without the support of a website or an app have been examined. Furthermore, current theory-based interventions focus mainly on preintentional determinants, although postintentional determinants should also be included to increase the likelihood of successful behavior change.ObjectiveThis study aimed to investigate the effect of the theory-based eHealth intervention, MyPlan 2.0, focusing on pre- and postintentional determinants on both accelerometer-based and self-reported PA levels in older Belgian adults in the short and intermediate term.MethodsThis study was a randomized controlled trial with three data collection points: baseline (N=72), post (five weeks after baseline; N=65), and follow-up (three months after baseline; N=65). The study took place in Ghent, and older adults (aged ≥65 years) were recruited through a combination of random and convenience sampling. At all the time points, participants were visited by the research team. Self-reported domain-specific PA was assessed using the International Physical Activity Questionnaire, and accelerometers were used to objectively assess PA. Participants in the intervention group got access to the eHealth intervention, MyPlan 2.0, and used it independently for five consecutive weeks after baseline. MyPlan 2.0 was based on the self-regulatory theory and focused on both pre- and postintentional processes to increase PA. Multilevel mixed-models repeated measures analyses were performed in R (R Foundation for Statistical Computing).ResultsSignificant (borderline) positive intervention effects were found for accelerometer-based MVPA (baseline−follow-up: intervention group +5 min per day and control group −5 min per day; P=.07) and for accelerometer-based total PA (baseline−post: intervention group +20 min per day and control group −24 min per day; P=.05). MyPlan 2.0 was also effective in increasing self-reported PA, mainly in the intermediate term. A positive intermediate-term intervention effect was found for leisure-time vigorous PA (P=.02), moderate household-related PA (P=.01), and moderate PA in the garden (P=.04). Negative intermediate-term intervention effects were found for leisure-time moderate PA (P=.01) and cycling for transport (P=.07).ConclusionsThe findings suggest that theory-based eHealth interventions focusing on pre- and postintentional determinants have the potential for behavior change in older adults. If future studies including larger samples and long-term follow-up can confirm and clarify these findings, researchers and practitioners should be encouraged to use a self-regulation perspective for eHealth intervention development.Trial RegistrationClinicaltrials.gov NCT03194334; https://clinicaltrials.gov/ct2/show/NCT03783611.

Black-White Differences in Long-Term Services and Supports (LTSS) Deserts: Implications for Unmet Care Needs.

BackgroundHome care workers work in an isolated environment, with limited supervision and guidance which makes them more prone to abuse and exploitation. While past research focused mostly on the well-being of care recipients, this study aimed to shed light on the care workers’ daily reality and explore if and how boundaries of professional care work are blurred. Our primary aim was to assess the working conditions and the prevalence of abuse and exploitation among live-in migrant home care workers and live-out local home care workers.MethodsA random stratified sample of Israeli older adults aged over 70, who are entitled by law to home care services was used to recruit 338 migrant live-in home care workers and 185 local live-out home care workers to a face-to-face survey. The participants were asked about their relationship with the care recipient and their exposure to violations of workers’ rights and work-related abuse.ResultsAlmost all the participants reported exposure to certain workers’ rights violations. Among the migrant live-in care workers, it was found that 58% of them did not receive any vacation days besides the weekly day-off, about 30% reported not get even a weekly day-off on a regular basis, and 79% did not get paid sick days. Local live-out care workers also suffered from a high prevalence of exploitation - 58% did not get any vacation days besides the weekly day-off, and 66% did not get paid sick leave. 20% of the local live-out care workers, and 15% of the migrant live-in care workers did not receive a signed contract. A smaller portion (7.4% among migrant care workers, 2.5% among local care workers) reported work-related abuse. When compared to local workers, migrant home care workers were more vulnerable to some worker’s rights violations, as well as emotional abuse.ConclusionThese findings are disturbing, as work-related abuse and exploitation affect not only the well-being of the care worker but also the health of the care recipients, as the quality of care provided deteriorates. At the public policy level, more significant attention and regulation of the home care industry is needed. The frequency and the nature of home visits made by home care agencies must be changed. Also, home care workers should be offered emotional support.