Informal Home Research Articles

Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to...

Long-Term Care Market Trend and Patterns of Caregiving in the U.S

ABSTRACT Informal care is a major source of long-term services and supports (LTSS) for older adults in the U.S. However, the increasing gap between available family caregivers and those needing LTSS in coming years warrants better understanding of the balance between informal and formal home or community-based LTSS to meet the growing demand. The current study aimed to 1) identify patterns of informal and formal LTSS use among community-dwelling individuals, and 2) examine if the supply of formal LTSS predicts the use of informal care. These aims were investigated by linking the market supply of formal LTSS at the state-level to the Health and Retirement Survey data (N = 7,781). Results provide important empirical evidence that patterns of informal and formal LTSS use among older adults are heterogeneous and market supply of formal home and community-based services (HCBS) significantly predicts the use of informal care. Most older adults rely on informal care in combination with some formal supports, suggesting that the two systems work in tandem to meet the growing needs of LTSS. This offers important implications for states allocating resources to meet the LTSS needs of older adults and individuals with disabilities since states play key roles in U.S. long-term care policies.

Effects on childhood infections of promoting safe and hygienic complementary-food handling practices through a community-based programme: A cluster randomised controlled trial in a rural area of The Gambia.

BackgroundThe Gambia has high rates of under-5 mortality from diarrhoea and pneumonia, peaking during complementary-feeding age. Community-based interventions may reduce complementary-food contamination and disease rates.Methods and findingsA public health intervention using critical control points and motivational drivers, delivered February–April 2015 in The Gambia, was evaluated in a cluster randomised controlled trial at 6- and 32-month follow-up in September–October 2015 and October–December 2017, respectively. After consent for trial participation and baseline data were collected, 30 villages (clusters) were randomly assigned to intervention or control, stratified by population size and geography. The intervention included a community-wide campaign on days 1, 2, 17, and 25, a reminder visit at 5 months, plus informal community-volunteer home visits. It promoted 5 key complementary-food and 1 key drinking-water safety and hygiene behaviours through performing arts, public meetings, and certifications delivered by a team from local health and village structures to all villagers who attended the activities, to which mothers of 6- to 24-month-old children were specifically invited. Control villages received a 1-day campaign on domestic-garden water use. The background characteristics of mother and clusters (villages) were balanced between the trial arms. Outcomes were measured at 6 and 32 months in a random sample of 21–26 mothers per cluster. There were no intervention or research team visits to villages between 6 and 32 months. The primary outcome was a composite outcome of the number of times key complementary-food behaviours were observed as a proportion of the number of opportunities to perform the behaviours during the observation period at 6 months. Secondary outcomes included the rate of each recommended behaviour; microbiological growth from complementary food and drinking water (6 months only); and reported acute respiratory infections, diarrhoea, and diarrhoea hospitalisation. Analysis was by intention-to-treat analysis adjusted by clustering. (Registration: PACTR201410000859336). We found that 394/571 (69%) of mothers with complementary-feeding children in the intervention villages were actively involved in the campaign. No villages withdrew, and there were no changes in the implementation of the intervention. The intervention improved behaviour adoption significantly. For the primary outcome, the rate was 662/4,351(incidence rate [IR] = 0.15) in control villages versus 2,861/4,378 (IR = 0.65) in intervention villages (adjusted incidence rate ratio [aIRR] = 4.44, 95% CI 3.62–5.44, p < 0.001), and at 32 months the aIRR was 1.17 (95% CI 1.07–1.29, p = 0.001). Secondary health outcomes also improved with the intervention: (1) mother-reported diarrhoea at 6 months, with adjusted relative risk (aRR) = 0.39 (95% CI 0.32–0.48, p < 0.001), and at 32 months, with aRR = 0.68 (95% CI 0.48–0.96, p = 0.027); (2) mother-reported diarrhoea hospitalisation at 6 months, with aRR = 0.35 (95% CI 0.19–0.66, p = 0.001), and at 32 months, with aRR = 0.38 (95% CI 0.18–0.80, p = 0.011); and (3) mother-reported acute respiratory tract infections at 6 months, with aRR = 0.67 (95% CI 0.53–0.86, p = 0.001), though at 32 months improvement was not significant (p = 0.200). No adverse events were reported. The main limitations were that only medium to small rural villages were involved. Obtaining laboratory cultures from food at 32 months was not possible, and no stool microorganisms were investigated.ConclusionsWe found that low-cost and culturally embedded behaviour change interventions were acceptable to communities and led to short- and long-term improvements in complementary-food safety and hygiene practices, and reported diarrhoea and acute respiratory tract infections.Trial registrationThe trial was registered on the 17th October 2014 with the Pan African Clinical Trial Registry in South Africa with number (PACTR201410000859336) and 32-month follow-up as an amendment to the trial.

The legal violence of care: Navigating the US health care system while undocumented and illegible.

Medical sociologists widely conceptualize illegality as a social determinant of health, implicating immigration law but not health care law in immigrant health disparities. Contributing to an emerging literature on legal violence in the context of health care, I explore how the Harris Health System in Houston, Texas legally affects low-income undocumented migrants' lives as they seek care. Drawing on eleven months of ethnographic and interview research with migrants and volunteers at a community-based organization, I argue that the health care system legally exacerbates migrant vulnerability in particular ways. Clerical staff follow medical protocol to deny migrants care on the basis of legibility (i.e., a photo ID), not legality (i.e., legal status), resulting in two classifications of illegality - what I term legible and illegible illegality. The former keeps migrants visible to the state but offers potential care, and the latter legally relegates migrants to the exploitative conditions of informal home care and/or a protracted state of suffering where, for many, death is the only recourse. This research shows that without substantive health reform, health practitioners - physicians, social workers, clerical staff, and home care workers - play an (in)direct role in shaping and normalizing immigrant health disparities.

Perceived Barriers to Mental Health Services among the Elderly in the Rural of Vietnam: A Cross Sectional Survey in 2019.

While the burden of neurological and mental disorders has been drastically increased in Vietnam, the current mental healthcare services do not meet the public demand. In order to determine perceived barriers to the use of mental health services, we conducted a cross-sectional study on 376 elderly people from a rural district in Hanoi, Vietnam. We found that depression may be an important indicator of the need for formal and informal community and home care mental health services. Barriers to mental healthcare access were categorized into 7 groups namely stigma, emotional concerns, participation restrictions, service satisfaction, time constraints, geographic and financial conditions, and availability of services. The most significant barriers are the limited availability of and accessibility to health professionals and services in rural areas. Our study highlights the urgent efforts that need to be made in order to enhance availability of mental healthcare services in rural areas of Vietnam.

Communication in Home Care: The Experiences of Formal Caregivers in Communicating with Persons Living with Dementia

There is limited literature on formal caregivers’ communication with persons living with dementia (PLWD) in home settings. Most research comes from studies of long-term care home settings or informal home care contexts. Yet, there are expected needs and rising demands for formal caregiver support within home care. The aim of this study was to understand better the lived experiences of personal support workers (PSWs) regarding their communication with PLWD in home settings. A hermeneutic phenomenological approach guided this research. Semi-structured interviews were conducted with 15 PSW participants. Three major themes were identified through thematic analysis: (1) challenged by dementia-related impairments; (2) valuing communication in care; and (3) home is a personal space. PSWs experienced difficulties in their communication with PLWD despite recognizing the importance of communication in providing optimal home care. This suggests that while PSWs possess good intentions, they do not possess the skills necessary to ensure effective interactions. Dementia-specific education and training are recommended to improve PSWs’ communication skills and to enhance quality of care. Findings highlight further the uniqueness of the personal home space itself on PSWs experiences with communication. Aspects of the home care environment can enable, but also complicate, successful communication between PSWs and PLWD. Consequently, findings also have implications for family members of PLWD and home care employers regarding optimizing practice and improving care.

ISupport‐Portugal: Adapting an evidence‐based online intervention for dementia caregivers to a different culture

AbstractBackgroundInformal dementia caregivers often struggle with several stressors that place them in a position of greater risk to develop physical and mental health problems in comparison to the general population. iSupport is an online training programme developed by the World Health Organization to prevent or minimize mental and physical health problems and improve the quality of life of dementia caregivers. Caregivers’ well‐known needs for information and skills training are addressed in twenty‐three lessons organized in five modules. Problem‐solving and cognitive behavioural therapy techniques are evidence‐based methods used in iSupport to change thoughts, feelings, and behaviours and improve overall functioning and life satisfaction. iSupport design choices are grounded on good practices for digital engagement including customization, interactivity and immediate feedback as interface features. Provided its web‐based delivery, iSupport is an ubiquitous and convenient solution, with the potential of scalability. A scalable tool to relieve caregivers’ psychological distress is a necessity in Portugal, given the country’s high share of very old people, high dementia prevalence and rate of informal home care. iSupport was culturally adapted to Portugal using an eight‐step methodological approach comprising: needs assessment from primary (web‐survey; N=180 caregivers) and secondary data collection; content translation; technical accuracy check by health professionals; cultural adaptation; expert panel appraisal; fidelity check by WHO; focus groups with caregivers and professionals; and usability testing. The needs assessment study suggested the potential utility and acceptance of online intervention programmes in Portugal. Findings from the adaptation process revealed the need for adjustments of the original iSupport programme in terms of content and interface. Contents were adapted for language semantic and conceptual equivalence, and adjustment to cultural habits. Definitions, designations, recommendations and case studies were modified to match local knowledge and practices. Findings from usability testing and focus groups resulted in recommendations to improve learnability, efficiency, memorability, and satisfaction with iSupport interface. iSupport‐Portugal introduces adjustments needed to achieve a culturally‐meaningful version of an evidence‐based programme aimed at lessening the psychological distress of dementia caregivers. As the only online programme for dementia caregivers available in Portugal, iSupport studies are instrumental in assessing the feasibility of similar resources in this context.

Home country institutional impact on the choice of direct vs indirect exports: an emerging markets perspective

PurposeThis study uses the notions of institutional harshness and uncertainty avoidance in the home country to explain the choice between direct and indirect exporting strategies by emerging market firms.Design/methodology/approachThis study is based on a dataset of 23,256 observations on firms from 32 countries spread over 11 years (2006–2016). Since only some firms undertake exports, the Heckman procedure is used to control for sample self-selection. In the first stage, we predict which firms will choose to export, and, in the second stage, we examine the factors driving the choice made by firms involved in exports between direct and indirect exports strategies.FindingsThe analyses reveal that firms are more likely to choose direct exports when institutional harshness is high and when they are from countries with low uncertainty avoidance. We also find that the strength of the relationship between institutional harshness and the choice of direct exports is moderated at high levels of uncertainty avoidance.Research limitations/implicationsWhile this study's empirical models account for many firm-level factors as well as home country differences discussed in the literature, we acknowledge there could be other temporal, firm or country idiosyncratic factors not included in our analysis driving the key choices examined in the paper.Originality/valueThis study makes three contributions to exporting literature. First, it highlights the drivers of the choice between direct and indirect exports. This choice is an important facet of exporting strategy and has received scant attention in prior IB research. Second, it demonstrates how the choice between direct and indirect exports is impacted by the degree of the home country's institutional harshness and uncertainty avoidance. Third, it offers insights on how the interaction of formal and informal home market institutional factors influences export strategy.

Characteristics and well-being of urban informal home care providers during COVID-19 pandemic: a population-based study

ObjectivesGlobally, the COVID-19 pandemic has overwhelmed many healthcare systems, which has hampered access to routine clinical care during lockdowns. Informal home care, care provided by non-healthcare professionals, increases the community’s...

Longitudinal Effects of the Home Learning Environment and Parental Difficulties on Reading and Math Development Across Grades 1-9.

This study focuses on parental reading and mathematical difficulties, the home literacy environment, and the home numeracy environment as well as their predictive role in Finnish children’s reading and mathematical development through Grades 1–9. We examined if parental reading and mathematical difficulties directly predict children’s academic performance and/or if they are mediated by the home learning environment. Mothers (n = 1590) and fathers (n = 1507) reported on their reading and mathematical difficulties as well as on the home environment (shared reading, teaching literacy, and numeracy) when their children were in kindergarten. Tests for reading fluency, reading comprehension, and arithmetic fluency were administered to children in Grades 1, 2, 3, 4, 7, and 9. Parental reading difficulties predicted children’s reading fluency, whereas parental mathematical difficulties predicted their reading comprehension and arithmetic fluency. Familial risk was associated with neither formal nor informal home environment factors, whereas maternal education had a significant relationship with both, with higher levels of education among mothers predicting less time spent on teaching activities and more time spent on shared reading. In addition, shared reading was significantly associated with the development of reading comprehension up to Grades 3 and 4, whereas other components of the home learning environment were not associated with any assessed skills. Our study highlights that taken together, familial risk, parental education, and the home learning environment form a complex pattern of associations with children’s mathematical and reading skills.

Needs, Aggravation, and Degree of Burnout in Informal Caregivers of Patients with Chronic Cardiovascular Disease.

This study aimed to answer three main questions with respect to home caregivers for people with cardiovascular disease: (1) Are the needs of home caregivers being met (and at what level)?; (2) what is the level of emotional exhaustion, depersonalization, and personal accomplishment of home caregivers?; (3) what sociodemographic variables of home caregivers are related to unmet needs and level of emotional exhaustion, depersonalization, and personal accomplishment? The study used the Camberwell Modified Needs Assessment questionnaire and the Maslach Burnout Inventory questionnaire. This study reports on 161 informal home caregivers of patients with cardiovascular disease. We found that younger caregivers were less likely to report unmet needs (p = 0.011), and showed lower rates of burnout on depersonalization and emotional exhaustion. In addition, caregivers who worked more often reported higher levels of met needs (p = 0.022), and showed lower rates of burnout on depersonalization (p = 0.005) and emotional exhaustion (p = 0.018). Subjects residing in urban areas were more likely to report unmet needs (p = 0.007), and showed higher rates of burnout on emotional exhaustion (p = 0.006). Older caregivers who are unemployed and reside in cities should be offered programs to determine their unmet needs and to receive support.

Type of Care and Living Situation Are Associated with Nutritional Care but Not Nutritional Status of Older Persons Receiving Home Care.

Nutritional care and nutritional status may differ in older persons receiving informal (IC) or professional (PC) home care and further depend on the living situation, but little is known in this regard. In this analysis of a cross-sectional multicenter study, type of care, living situation, and nutritional care were enquired in 353 older adults (≥65) receiving IC or PC, living either with partner (LP), with others (LO) or alone (LA), and the nutritional status was determined by BMI and MNA®. For IC receivers, food shopping (IC-LP 94%, IC-LO 96%, IC-LA 92%) and warm meals (IC-LP 89%, IC-LO 90%, IC-LA 71%) were mainly provided by relatives, whereas 47% of PC-LA prepared warm meals by themselves and 22% received meals on wheels. Thirteen percent were underweight, 13% malnourished, and 57% at risk of malnutrition without differences between the groups. Adjusted odds ratios (OR) of being malnourished were also not different (IC-LP 2.2 [95% CI 0.5–9.7], IC-LO 1.4 [0.3–6.6], IC-LA 1.4 [0.3–6.6]) compared to PC-LA. In conclusion, provision of nutritional care obviously differed according to the type of care and living situation, whereas nutritional status does not seem to be affected by these aspects. More research is clearly needed in this field.

Informal And Formal Home Care For Older Adults With Disabilities Increased, 2004-16.

Rates of informal home care use among older adults with disabilities increased from 2004 to 2016, such that in 2016 almost three-quarters of these adults received informal home care. Informal care remains the most common source of home care, even though formal home care use grew at almost twice the rate, with a 6-percentage-point increase to 36.9percent in 2016.

Cost of Cerebellar Ataxia in Hong Kong: A Retrospective Cost-of-Illness Analysis.

Background: Cerebellar ataxia affects the coordination and balance of patients. The impact of this disease increases burden in patients, caregivers and society. Costs and the burden of this disease have not been investigated in Hong Kong.Objectives: (1) To estimate the socioeconomic cost of cerebellar ataxia in Hong Kong for the base year 2019, (2) to assess the health-related quality of life (HRQoL) and severity of ataxia, and (3) to establish the correlation between the severity and cost of cerebellar ataxia and to examine the correlation between the severity of cerebellar ataxia and HRQoL.Methods: A retrospective cross-sectional study was conducted amongst 31 patients with cerebellar ataxia. Cost-related data were obtained through self-reported questionnaires. The severity of ataxia was assessed using the Scale for Assessment and Rating of Ataxia, and HRQoL was assessed using the Short Form (36) Health Survey (SF-36). Pearson correlation was used for normally distributed data, whereas Spearman correlation was used otherwise.Results: The mean severity of ataxia was 21 out of 40. The average direct and indirect costs of a patient with ataxia in 6 months were HKD 51,371 and HKD 93,855, respectively. The mean difference between the independent to minimally dependent in activities of daily living (ADL) group and the moderate to maximally dependent in ADL group for direct and indirect costs was HKD 33,829 and HKD 51,444, respectively. Significant expenditure was related to production lost (42%), caregiver salary (17%), and in-patient care (16%). The physical functioning (r = −0.58) and general health (r = −0.41) of SF-36 were negatively correlated with disease severity (p < 0.05). A significant, positive correlation was found between disease severity and direct cost (Spearman's rho = 0.39) and the cost of hiring a caregiver (Spearman's rho = 0.43).Conclusion: The mean cost for 6 months for patients with cerebellar ataxia in Hong Kong is HKD 146,832. Additional support, including employment, access to specialist consultants, informal home care and community participation, are some areas that should be addressed. Future study on a larger population with a prospective design is necessary to confirm the aforementioned claims.

Informal home care providers: the forgotten health-care workers during the COVID-19 pandemic

The COVID-19 pandemic has placed pressure on many national health-care systems worldwide. Due to the rapid surge in caseloads and resource constraints in health systems, in many high-income settings, the focus has been on disease screening, with those who have severe disease prioritised for hospitalisation. But the COVID-19 pandemic has also led to an unprecedented reliance on home care as one pillar of the health-care system to support people with confirmed or suspected COVID-19. Meanwhile, informal home care provision and challenges faced by care providers, excluding those who are formal and paid, in the home context have largely been overlooked.

Phonological Awareness and Letter Knowledge in Qurʾanic Reading: A-ba-ha-ta Method as a Case Study

Abstract Phonological awareness and letter knowledge are essential elements needed for a person to be able to read and this includes the reading of the Quran. This study examined and explored the role of phonological awareness and letter knowledge, via A-ba-ha-ta method for teaching to read and write the Qurʾan. A-ba-ha-ta is a fast method to teach reading the Quran that uses a compilation of books structured aiming to instil the Quranic reading knowledge in 30 hours. Six students from different backgrounds took part in this case study. Their reading achievements were investigated based on the teaching for 30 hours within the duration of three weeks, three months and 1 year. The findings show that the students performed best when A-ba-ha-ta method was taught within the period of 3 months in an informal home setting. This is followed by the students taught within 1 year in a school setting and lastly the ones taught within three weeks in an informal school setting. Based on the findings, students who were taught with the A-ba-ha-ta method for three months’ period performed better in the assessment compared to those taught within three weeks and 1 year. Additionally, students who were taught within 1 year performed better in the assessment compared to those within three weeks.

Utilization and costs of formal and informal care, home adaptations, and physiotherapy among older patients with hip fracture.

AimsThis feasibility study investigates the utilization and cost of health resources related to formal and informal care, home adaptations, and physiotherapy among patients aged 60 years and above after hip fracture from a multicentre cohort study (World Hip Trauma Evaluation (WHiTE)) in the UK.MethodsA questionnaire containing health resource use was completed at baseline and four months post-injury by patients or their carer. Completion rate and mean cost of each health resource item were assessed and sensitivity analysis was performed to derive a conservative estimate of the informal care cost. All costs are presented in 2017/18 pound sterling.ResultsA total of 4,183 patients from the WHiTE cohort completed the baseline questionnaire between May 2017 and April 2018, of whom 3,524 (84.2%) completed the four-month health resource section. Estimated mean costs of formal and informal care, home adaptations, and physiotherapy during the four months following injury were £2,843 (SD 5,467), £6,613 (SD 15,146), £706 (SD 1,706) and £9 (SD 33), respectively. Mean cost of informal care decreased to £660 (SD £1,040) in the sensitivity analysis when informal care was capped at 17.2 hours per day.ConclusionInformal care is a significant source of costs after hip fracture and should therefore be included in future economical analyses of this patient group. Our results show that there is considerable variation in the interpretation of time-use of informal care among patients and further work is needed to improve how data regarding informal care are collected in order to obtain a more accurate cost estimate.Cite this article: Bone Joint Res. 2020;9(5):250–257.

Informal, formal, or both? Assessing the drivers of home care utilization in Austria using a simultaneous decision framework

ABSTRACT Understanding the relationship between different modes of home care for the elderly and the determinants of mode choice is fundamental for an efficient care policy in ageing societies. However, empirical research on this issue has revealed that policy conclusions will depend on both national and methodological factors. Using data for Austria from the Survey of Health, Ageing and Retirement in Europe, the purpose of the present paper is twofold: First, at least to our knowledge, it is the first comprehensive assessment of this kind for Austria. Second, it adds to the literature explicitly focusing on the combined use of informal and formal care in addition to the exclusive use of these services based on an econometric framework accounting for the simultaneity and interdependence between these modes. Our results provide strong evidence for a task-specific and complementary relation of formal and informal home care in Austria, with the health status and functional limitations as the main determinants of home care choice.

Women’s mobility, neighbourhood socio-ecologies and homemaking in urban informal settlements

The paper contributes to the growing research on relational thinking about housing and home by exploring the informal homes of rural migrants in Khulna city, Bangladesh. The concept of ‘unbounding’ is used to trace the fluidity and connections established between migrant homes and neighbourhood socio-ecologies. Walking interviews exploring women’s livelihoods reveal that different expendable agencies of the urban environment (e.g. trash, weeds and animal excreta) create conditions for labour in which migrant women hold specific competencies to secure essential resources for home. Unbounding positions home within a socio-ecology of multiple houses that women traverse to support their urban living. The approach offers opportunities to examine the unique ways urban homeless populations strategically as well as affectively engage with under-recognized agencies and actors in informal settlements. Unbounding provides a useful lens with which to raise new conceptual and empirical questions about housing and home in relation to the city that contributes to the homes and livelihoods of marginalized populations.

Formal versus Informal Mortgage Debt and Stock Market Participation

We study whether mortgage debt obtained from licensed financial institutions and informal home loans obtained from private lending have differing impacts on stock ownership. Using the China Household Finance Survey data, we show that the two forms of borrowing have opposite effects on stock market participation. Mortgage debt is positively, while informal home loan is negatively, related to a household’s likelihood and degree of stock market participation. Further tests based on instrumental variables suggest a causal impact of mortgage debt and informal home loan on stock market participation. The positive role of mortgage debt is more pronounced among urban, highly educated, or financially literate households, while the negative role of the informal home loan is more visible among rural households and those with lower levels of education or financial literacy. High borrowing cost plays an important role in the negative impact of the informal home loan on household stock investing.