Family Home Care Research Articles

Anthropometric and sociodemographic variables, but not preconception or prenatal maternal nutrition supplementation, predict neurodevelopment in offspring of the 'Women First'trial.

Multiple factors influence infant and child neurodevelopment in low resource settings. In offspring of participants in the preconception maternal nutrition trial, Women First(WF), we examined the impact of providing a preconception (Arm 1) or prenatal (Arm 2) nutrient supplement (compared to controls, Arm 3) on neurodevelopmental outcomes at 24 months; predictors of neurodevelopment scores; and associations of infant anthropometrics with neurodevelopmental scores. Follow-up visits for anthropometry were conducted at 6-, 12-, 18-and 24-monthof age. At 24-months, in a randomized subset,the Bayley Scales of Infant Development, 3rdedition (BSID-III), including cognitive, motorand social-emotional subscales,and the Family Care Indicators (FCI) questionnaire, assessing family and home environment, were completed. Multiple covariates (intervention arm, site, maternal sociodemographic characteristics, FCI subscales, birthweightand 6-24 months'change in anthropometry z-scores, (e.g., ΔLAZ6-2 4) were evaluated by linear regression to predict BSID-III outcomes and to assess associations of anthropometric changes with BSID-III scores. The analysis consisted of 1386 infants (n = 441, 486, 459 for Arms 1, 2and 3, respectively). None of the domain-specific BSID-III subscale scores differed by maternal intervention arm. Four covariates significantly predicted (p ≤ 0.01) all 3 BSID-III subscales: secondary maternal education, ΔLAZ6 - 24, birthweight >2500 g, and FCI play materials. Linear growth was associated with all domains of neurodevelopment. The results underscore the multi-dimensional aspects of child development represented by the nurturing care framework, including prenatal maternal nutrition, post-natal growth, maternal education for responsive caregivingand opportunities for early learning.

RURAL DISPARITIES IN THE USE OF FAMILY AND FORMAL CAREGIVING FOR OLDER ADULTS WITH DISABILITIES

Abstract As federal and state policies rebalance long-term care from institutional settings to home- and community-based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it’s unknown if use of formal and family care varies by rurality as a disproportional share of the aging population reside in rural areas. Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care by rurality among community-dwelling adults aged 65+ with functional limitations from 2004-2016. Compared to older adults in urban areas, older adults in rural areas are more likely to receive any family care than those in urban areas and less likely to receive any formal care (2.4 and -4.4 percentage points respectively, p<0.05). From 2004 to 2016, a growing proportion of older adults in rural areas receive care from family caregivers exclusively while a decreasing proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite trend — a growing proportion of urban adults rely exclusively on formal care and a decreasing proportion rely exclusively on family care. We find that national estimates of sources of caregiving and their trends mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home-based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers.

Research protocol of the Laval-ROSA Transilab: a living lab on transitions for people living with dementia

BackgroundThe Laval-ROSA Transilab is a living lab that aims to support the Laval Integrated Health and Social Services Centres (Quebec, Canada) in consolidating the Quebec Alzheimer Plan. It aims to improve care transitions between different settings (Family Medicine Groups, home care, and community services) and as such improve the care of people living with dementia and their care partners. Four transition-oriented innovations are targeted. Two are already underway and will be co-evaluated: A) training of primary care professionals on dementia and interprofessional collaboration; B) early referral process to community services. Two will be co-developed and co-evaluated: C) developing a structured communication strategy around the dementia diagnosis disclosure; D) designation of a care navigator from the time of dementia diagnosis. The objectives are to: 1) co-develop a dashboard for monitoring transitions; 2) co-develop and 3) co-evaluate the four targeted innovations on transitions. In addition, we will 4) co-evaluate the impact and implementation process of the entire Laval-ROSA Transilab transformation, 5) support its sustainability, and 6) transfer it to other health organizations.MethodsMulti-methods living lab approach based on the principles of a learning health system. Living labs are open innovation systems that integrate research co-creation and knowledge exchange in real-life settings. Learning health systems centers care improvement on developing the organization's capacity to learn from their practices. We will conduct two learning cycles (data to knowledge, knowledge to practice, and practice to data) and involve various partners. We will use multiple data sources, including health administrative databases, electronic health records data, surveys, semi-structured interviews, focus groups, and observations.DiscussionThrough its structuring actions, the Laval-ROSA Transilab will benefit people living with dementia, their care partners, and healthcare professionals. Its strategies will support sustainability and will thus allow for improvements throughout the care continuum so that people can receive the right services, at the right time, in the right place, and from the right staff.

Rural disparities in use of family and formal caregiving for older adults with disabilities.

As federal and state policies rebalance long-term care from institutional settings to home- and community-based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it is unknown if use of formal and family care varies by rurality. Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care and self-reported expectation of nursing home use by rurality among community-dwelling adults aged 65+ with functional limitations from 2004 to 2016. Older adults residing in rural areas are more likely to receive any family care than those in urban areas. From 2004 to 2016, a higher proportion of older adults in rural areas receive care from family caregivers exclusively while a lower proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite - a higher proportion of urban adults rely exclusively on formal care and a lower proportion rely exclusively on family care in 2016 compared to 2004. We find that national estimates of sources of caregiving and their changes over time mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home-based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers.

Summaries of Articles

Summaries of Articles

Working Conditions Affecting Home Care Workers' Stress and Turnover Intention.

This study explored how working conditions influence the psychological outcomes of paid family and non-family home care workers, focusing on the interaction between institutional and recipient effects. Using data from the 2019 Korean Long-Term Care Survey (N = 998), we performed regression analyses on home care workers' stress and turnover intention. For both types of home care-workers, inadequate working conditions and high occupational hazards influenced stress, while good working conditions and low occupational hazards influenced turnover intention. Overall, the findings suggest that wages, working hours, and work intensity must be reformed in a home care-worker-friendly manner; the wages for home care workers must be raised to a level appropriate to their care work; the services provided by home care workers should be explicitly stipulated; and, to eliminate occupational hazards, environments for fostering cordial relationships between recipients and home care workers must be developed.

Availability of family care resources, type of primary caregiving and home death among the oldest-old: A population-based retrospective cohort study in China

Place of death is one of the quality indicators for end-of-life (EOL) care, and most people prefer to die at home. This study investigated the association between availability of family care resources, type of primary caregiving and home death. A sample of 21,677 deceased oldest-old consisting of 5,224 octogenarians, 8,489 nonagenarians, and 7,964 centenarians, was derived from the 1998–2018 Chinese Longitudinal Healthy Longevity Survey. Marital status, number of children and living with family members were indicators for the availability of family care resources. After accounting for other covariates, number of children (4–6 vs. 0–3: adjusted odds ratio [95% CI]: 1.81 [1.54 to 2.13]; >6 vs. 0–3: 2.63 [2.09 to 3.31]) and living with family members (28.29 [23.89 to 33.49]) were positively associated with informal caregiving (all P < 0.001). Number of children (4–6 vs. 0–3: 1.17 [1.04 to 1.32]; >6 vs. 0–3: 1.19 [1.03 to 1.38]), living with family members (2.52 [2.17 to 2.92]) and informal caregiving (11.43 [9.58 to 13.64] were associated with increased odds of dying at home (all P < 0.05). The association between availability of family care resources (number of children: β [95% CI], % mediated: 0.05 [0.04 to 0.07], 55.6%; living with family members: 0.14 [0.13 to 0.15], 46.7%) and home death was partially mediated by the type of primary caregiving. Our results suggest that the availability of family care resources played a significant role in making home death possible through informal caregiving. Therefore, continuous policy efforts on the different roles of specific family care resources are warranted to train and support family caregivers to facilitate culturally appropriate EOL services, such as dying at preferred place.

Home care nursing practice for older persons with heart failure living at home.

To enhance knowledge of how older people with heart failure, living at home, manage their illness with the support of their family caregivers and home care nursing services. Heart failure monitoring and self-care have been important means of reducing the serious impact of heart failure. Drawing on theories of practice as enacted and conceptualising service users and their family caregivers as active, the idea of attunement was used to explore how home care nurses work in supporting them. Ethnographic case study. Data collection involved home visits and interviews (10 home care users, 10 caregivers, five home care team leaders). Data were field-notes and transcribed interviews. Themes were deductively developed from the findings, informed by the theoretical background, using content analysis. The COREQ checklist was used. Three themes were developed from the data: (1) Practices of attunement in relations, (2) Becoming among difficulties and (3) Off track-difficult to attune around self-care. The findings reflect the complexity of heart failure monitoring at home, showing how, in addition to self-care measures, users are supported by an array of informal and formal care. The caregiving situation is shaped by relations among participants and involves making oneself available to the situation. We suggest a stance of attunement for home care nurses, which demands tact and calls for interest, engagement and openness. Study findings caution against limiting heart failure monitoring to circumscribed tasks, instead calling for a holistic understanding of what may be helpful for users. Home care nurses need time to attune with users living with heart failure and their caregivers to prevent exacerbations and promote well-being. Although patients were not formally involved in study design ethnography favours their voice.

Lively Minds: improving health and development through play–a randomised controlled trial evaluation of a comprehensive ECCE programme at scale in Ghana

IntroductionMany children in developing countries grow up in environments that lack stimulation, leading to deficiencies in early years of development. Several efficacy trials of early childhood care and education (ECCE)...

End of life care in UK care homes during the COVID-19 pandemic: a qualitative study

PurposeTo report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic.MethodsUK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis.ResultsForty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time.ConclusionIt is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing.

Outcomes of remote activity monitoring for persons living with dementia over an 18‐month period

Outcomes of remote activity monitoring for persons living with dementia over an 18‐month period

Guilt, tears and burnout-Impact of UK care home restrictions on the mental well-being of staff, families and residents.

AimsThe aim of this study was to explore the impact of the pandemic on the emotional and mental well‐being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK.DesignLongitudinal, qualitative semi‐structured interview study.MethodsRemote semi‐structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow‐up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences.ResultsIn all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. We identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief.ConclusionsThe pandemic has had a detrimental impact on the lives of those surrounding care homes—from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff.ImpactThis is the first paper to highlight the effects of the long‐lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support.

Alzheimer's Association Project VITAL: A Florida Statewide Initiative Using Technology to Impact Social Isolation and Well-Being.

Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs.

Are we allowed to visit now? Concerns and issues surrounding vaccination and infection risks in UK care homes during COVID-19.

Backgroundvaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits.Methodsfamily carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis.Resultsacross 62 baseline and follow-up interviews with family carers (n = 26; 11) and care home staff (n = 16; 9), five core themes were developed: delayed and inconsistent offers of face-to-face visits; procedures and facilitation of visits; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently.Conclusionswe make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff.

Enhancing palliative care occupancy and efficiency: a quality improvement project that uses a healthcare pathway for service integration and policy development

This article described our experience in implementing a quality improvement project to overcome the bed overcapacity problem at a comprehensive cancer centre in a tertiary care centre. We formed a...

The experience of loneliness and living with sight loss in English care homes

Loneliness is a serious societal concern, especially the loss of social connections in later life. Those with sight loss living in care homes are thought to face particular challenges in social engagement, but research is scarce. This study aimed to examine the experience of loneliness amongst residents with sight loss; the different dimensions of loneliness; and their attitudes about the role of care homes in addressing these needs. Through in-depth interviews with 18 residents, supplemented by interviews with family members and care home managers, the research identified that residents were generally satisfied with their social situation. However, there was evidence that sight loss was not appropriately accommodated within the care home. In their efforts to enable all residents to engage in social activities, attempts to include those with sight loss could feel contrived, and residents with sight loss did not feel meaningfully involved. Residents described barriers to forming close associations, including the challenges of background noise in communal spaces and a sense that conversation in the care home lacked stimulation. Residents felt that opportunities to forge and maintain bonds with people outside the care home were limited. The research concludes that care homes should avoid inclusion-for-inclusion's sake, and future research could study the effectiveness of interventions to improve care home links to the wider community.

Clinical outcomes in a primary-level non-communicable disease programme for Syrian refugees and the host population in Jordan: A cohort analysis using routine data.

BackgroundLittle is known about the content or quality of non-communicable disease (NCD) care in humanitarian settings. Since 2014, Médecins Sans Frontières (MSF) has provided primary-level NCD services in Irbid, Jordan, targeting Syrian refugees and vulnerable Jordanians who struggle to access NCD care through the overburdened national health system. This retrospective cohort study explored programme and patient-level patterns in achievement of blood pressure and glycaemic control, patterns in treatment interruption, and the factors associated with these patterns.Methods and findingsThe MSF multidisciplinary, primary-level NCD programme provided facility-based care for cardiovascular disease, diabetes, and chronic respiratory disease using context-adapted guidelines and generic medications. Generalist physicians managed patients with the support of family medicine specialists, nurses, health educators, pharmacists, and psychosocial and home care teams. Among the 5,045 patients enrolled between December 2014 and December 2017, 4,044 eligible adult patients were included in our analysis, of whom 72% (2,913) had hypertension and 63% (2,546) had type II diabetes. Using visits as the unit of analysis, we plotted the following on a monthly basis: mean blood pressure among hypertensive patients, mean fasting blood glucose and HbA1c among type II diabetic patients, the proportion of each group achieving control, mean days of delayed appointment attendance, and the proportion of patients experiencing a treatment interruption. Results are presented from programmatic and patient perspectives (using months since programme initiation and months since cohort entry/diagnosis, respectively). General linear mixed models explored factors associated with clinical control and with treatment interruption. Mean age was 58.5 years, and 60.1% (2,432) were women. Within the programme’s first 6 months, mean systolic blood pressure decreased by 12.4 mm Hg from 143.9 mm Hg (95% CI 140.9 to 146.9) to 131.5 mm Hg (95% CI 130.2 to 132.9) among hypertensive patients, while fasting glucose improved by 1.12 mmol/l, from 10.75 mmol/l (95% CI 10.04 to 11.47) to 9.63 mmol/l (95% CI 9.22 to 10.04), among type II diabetic patients. The probability of achieving treatment target in a visit was 63%–75% by end of 2017, improving with programme maturation but with notable seasonable variation. The probability of experiencing a treatment interruption declined as the programme matured and with patients’ length of time in the programme. Routine operational data proved useful in evaluating a humanitarian programme in a real-world setting, but were somewhat limited in terms of data quality and completeness. We used intermediate clinical outcomes proven to be strongly associated with hard clinical outcomes (such as death), since we had neither the data nor statistical power to measure hard outcomes.ConclusionsGood treatment outcomes and reasonable rates of treatment interruption were achieved in a multidisciplinary, primary-level NCD programme in Jordan. Our approach to using continuous programmatic data may be a feasible way for humanitarian organisations to account for the complex and dynamic nature of interventions in unstable humanitarian settings when undertaking routine monitoring and evaluation. We suggest that frequency of patient contact could be reduced without negatively impacting patient outcomes and that season should be taken into account in analysing programme performance.

The Complexities of ‘Home’: Young People ‘on the Move’ and State Responses

Abstract‘Home’ invokes ambiguous meanings for policy, practice and academia. This article explores the complexities of ‘home’ in relation to the experiences of two groups of young people in transitory circumstances (UK children who go missing from the family home or alternative care; and young people who have been separated from their home and families as refugees). We consider how the meaning given to ‘home’, despite its inherent ambiguity, functions as a central concept around which the vulnerability and credibility of children and young people are constructed. By problematising the universalised concept of home and the notion of ‘family’ that it implies, this article contributes to criminology and refugee studies by exploring State responses to ‘youth journeys’ (within and to the UK) through an idealised lens of ‘home’. This normative view, we suggest, forms the basis for determining State responses, with significant consequences for these young people.

Care preferences of healthy, middle-aged adults in Japan and the USA if they acquired dementia: A cross-sectional observational study.

Japan introduced dementia-friendly initiatives into its national policies to help people with dementia remain involved in society for as long as possible. However, some people might choose to live in a nursing home to avoid care burden on family members. Understanding middle-aged adults' preferences for place of care and identifying factors that influence their preferences would help policy decision-makers promote dementia-friendly initiatives. The present study aimed to investigate the care preferences of middle-aged adults if they acquired dementia in Japan and the USA. We carried out a cross-sectional observational study using an internet-based questionnaire survey of Japanese residents with Japanese ethnicity, Japanese Americans, and non-Asian Americans aged 40-70 years. A total of 301 participants, including 104 Japanese residents, 93 Japanese Americans and 104 non-Asian Americans, completed the survey. Participants were asked to answer the items based on a hypothetical situation in which they had acquired dementia requiring regular care and supervision. Participants preferred nursing home care (29.9%), followed by professional home care (19.6%), family home care (17.6%) and hospital care (11.3%). Japanese residents had a significantly lower preference for professional home care than did Japanese or non-Asian Americans (adjusted odds ratio 0.28, 95% confidence interval 0.10-0.75). Between-ethnicity difference in care preferences was not observed. A low preference for professional home care among the middle-aged adults might be influenced by country-specific long-term and dementia care systems. Policy decision-makers should develop professional home care services that are more available for families of people living with dementia. Geriatr Gerontol Int 2019; 19: 829-833.

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care-giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care-giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long-term care facilities that family members prefer to be involved in decision-making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs' involvement in home-care settings from the FCs' perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs' caring for home-dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty-six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included "relationship building with professionals," "negotiating with professional care," "being professionally supported," and "managing role expectations and knowledge sharing". The fifth theme, "working together" described the mutual care for the care recipient. Although the first four themes were consistent with a pre-existing conceptual model by Sims-Gould and Marin-Matthews (2010), the fifth required an expansion of the model with an additional contribution "collaborative practice". The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.