Female Pakistani carers' views on future formal and informal care for their older relatives in Norway.

BACKGROUND: The aging of Pakistani immigrants in Norway raises questions related to their increased need for care and help from relatives, as well as those concerning what future formal and informal care and healthcare accessibility for older immigrants may look like. The hidden nature of family caregiving means that the circumstances of carers, their views and their dilemmas related to future care are largely invisible. In this study, we explored female Pakistani carers' views of future care and healthcare accessibility for their older relatives in Norway. METHODS: Our data included interviews with family carers between the ages of 23 and 40 years old, living in Oslo, Norway. We recruited ten family carers, out of which eight were daughters and two were daughters-in-law. Interviews were conducted by the first author in Urdu or English and were recorded and transcribed verbatim. RESULTS: Our findings revealed several factors that influenced participants' perceptions about formal and informal caregiving, which can be organised into the following themes: 1) caring for family in Norway as in Pakistan, 2) worries about being 'dropped off' at a care home, 3) concerns about being cared for by outsiders, 4) questions about what other people might say and 5) adhering to society's expectations of a 'good' carer. CONCLUSION: Family carers' traditional views of filial piety do not entirely determine the use of or access to healthcare services of their older relatives. There is a need to develop culturally sensitive healthcare systems so that immigrant families and their carers have more options in choosing care in old age, which in turn will ease their families' care burden. Healthcare professionals and policymakers should not assume that immigrant families will take care of their own older members but should instead secure adequate support for older immigrants and their family carers.

[Admission and discharge of people with dementia- Communication from the perspective of respite care experts]. / Aufnahme und Entlassung von Menschen mit Demenz - Kommunikation aus Sicht von Experten der Kurzzeitpflege.

BACKGROUND: There is a lack of information regarding the structures and processes of communication between home and respite care at admission and discharge of people with dementia (PwD}. Considering the background,it was aimed to reconstruct information exchange between home and respite care of PwD and to identify factors which affect the quality of communication structure and processes. METHODS: Semi-structured guided telephone interviews with 16 experts out of 15 respite care facilities were conducted. A structured content analysis and a process-mapping were performed. RESULTS: Core procedures of admission and discharge of PwD were identified. There were differences and overlaps between the institutions. The differences were related to the point of time and the frequency of intake inter-"views, the checks of information completeness and the provision of information.The institutions had in common that no further coordinative steps were planned after discharge. Aneed for action was identified regarding the coordination of care and the performance of handover evaluations. CONCLUSION: A timely provision of information for respite care is crucial fo rPwD. The coordination of all stakeholders,the assignment of responsibilities in communication, and easing the burden of informal caregivers is a requirement for care continuation. Across sectorial case-management, a standard of care transition, and the evaluation of hand overs is recommended.

Cross-national differences in the prevalence and correlates of burden among older family caregivers in the World Health Organization World Mental Health (WMH) Surveys.

BACKGROUND: Current trends in population aging affect both recipients and providers of informal family caregiving, as the pool of family caregivers is shrinking while demand is increasing. Epidemiological research has not yet examined the implications of these trends for burdens experienced by aging family caregivers. Method Cross-sectional community surveys in 20 countries asked 13 892 respondents aged 50+ years about the objective (time, financial) and subjective (distress, embarrassment) burdens they experience in providing care to first-degree relatives with 12 broadly defined serious physical and mental conditions. Differential burden was examined by country income category, kinship status and type of condition. RESULTS: Among the 26.9-42.5% respondents in high-, upper-middle-, and low-/lower-middle-income countries reporting serious relative health conditions, 35.7-42.5% reported burden. Of those, 25.2-29.0% spent time and 13.5-19.4% money, while 24.4-30.6% felt distress and 6.4-21.7% embarrassment. Mean caregiving hours per week in those giving any time were 16.6-23.6 (169.9-205.8 h/week per 100 people aged 50+ years). Burden in low-/lower-middle-income countries was 2- to 3-fold higher than in higher-income countries, with any financial burden averaging 14.3% of median family income in high-, 17.7% in upper-middle-, and 39.8% in low-/lower-middle-income countries. Higher burden was reported by women than men and for conditions of spouses and children than parents or siblings. CONCLUSIONS: Uncompensated family caregiving is an important societal asset that offsets rising formal healthcare costs. However, the substantial burdens experienced by aging caregivers across multiple family health conditions and geographic regions threaten the continued integrity of their caregiving capacity. Initiatives supporting older family caregivers are consequently needed, especially in low-/lower-middle-income countries.

Future directions in family and professional caregiving for the elderly.

As the population ages and the expected wave of baby boomers settles into old age, there is a pressing need to examine the people and institutions that care for elders and the ways in which the system will need to adapt during the next 5-10 years to accommodate the needs of the elderly and of their caregivers. This paper examines future directions in this field, identifying the major issues from two perspectives: family caregiving and professional caregiving. Despite extensive research on caregiving, more attention to a series of methodological issues is needed, as is more extensive evaluation of promising intervention models in community and institutional settings. Effective strategies to lower caregiver distress and improve the quality of care can be implemented in efficient ways that manage costs, but the argument for innovations must be made based on efficacy.

Emerging technologies to support independent living of older adults at risk.

The aging of the population is expected to place an unprecedented strain on health care systems over the next two decades and beyond. Emerging electronic monitoring technologies provide opportunities to learn about the aging process, age-related diseases, and contribute to new, cost effective care models that preserve independence at home for older adults at risk. The goals of this article are to familiarize the reader with emerging technologies and potential applications to older adults' at-risk, review the current literature about the clinical and economic outcomes of emerging technologies, and to outline future directions and challenges.

Changes in the balance between formal and informal care supply in England between 2001 and 2011: evidence from census data.

Informal care plays a crucial role in the social care system in England and is increasingly recognised as a cornerstone of future sustainability of the long-term care (LTC) system. This paper explores the variation in informal care provision over time, and in particular, whether the considerable reduction in publicly-funded formal LTC after 2008 had an impact on the provision of informal care. We used small area data from the 2001 and 2011 English censuses to measure the prevalence and intensity (i.e. the number of hours of informal care provided) of informal care in the population. We controlled for changes in age structure, health, deprivation, income, employment and education. The effects of the change in formal social care provision on informal care were analysed through instrumental variable models to account for the well-known endogeneity. We found that informal care provision had increased over the period, particularly among high-intensity carers (20+ hours per week). We also found that the reduction in publicly-funded formal care provision was associated with significant increases in high-intensity (20+ hours per week) informal care provision, suggesting a substitutive relationship between formal and informal care of that intensity in the English system.

Development and Psychometrics Test of Home Environment Assessment Checklist for Community-Dwelling Older Adults with Dementia.

BACKGROUND: Home environment is a core domain in the care of community-dwelling older adults with dementia, but there is no suitable instrument to measure it in China. OBJECTIVE: To develop and psychometrically test the home environment assessment checklist for community-dwelling older adults with dementia. METHODS: A three-step process was performed to develop and test this instrument: 1) based on the evidence-based theory, the checklist was summarized as the main points of evidence from living environment settings among older adults with dementia, 2) the draft tool was assigned to an iterative process of evaluation by a panel of examiners consisting of experts from treatment, nursing and caring, people with dementia and their caregivers, 3) inter-rater reliability and internal consistency were calculated with a sample of 348 caregivers of the older adults with dementia. RESULTS: The HEAC consisted of 71 items in domains addressing safety, stability and familiarity, visual cues, and sensory stimulation. Psychometric evaluation showed that this tool demonstrated sound reliability and validity. Content validity was 0.969 which was established by a panel of experts (n = 10). Inter-rater reliability of two researchers was 0.978, and 0.848 for researchers and caregivers. Test-retest reliability was excellent (ICC = 0.757-0.877) in community-dwelling older adults with dementia 2 week apart. CONCLUSION: The HEAC is a new tool to help collect the reliable information on the barriers and facilitators of home environment for community-dwelling older adults with dementia and to precipitate the home modification process to improve the quality of care for people with dementia and their caregivers in daily life.

Home buprenorphine/naloxone induction in primary care.

BACKGROUND: Buprenorphine can be used for the treatment of opioid dependence in primary care settings. National guidelines recommend directly observed initial dosing followed by multiple in-clinic visits during the induction week. We offered buprenorphine treatment at a public hospital primary care clinic using a home, unobserved induction protocol. METHODS: Participants were opioid-dependent adults eligible for office-based buprenorphine treatment. The initial physician visit included assessment, education, induction telephone support instructions, an illustrated home induction pamphlet, and a 1-week buprenorphine/naloxone prescription. Patients initiated dosing off-site at a later time. Follow-up with urine toxicology testing occurred at day 7 and thereafter at varying intervals. Primary outcomes were treatment status at week 1 and induction-related events: severe precipitated withdrawal, other buprenorphine-prompted withdrawal symptoms, prolonged unrelieved withdrawal, and serious adverse events (SAEs). RESULTS: Patients (N = 103) were predominantly heroin users (68%), but also prescription opioid misusers (18%) and methadone maintenance patients (14%). At the end of week 1, 73% were retained, 17% provided induction data but did not return to the clinic, and 11% were lost to follow-up with no induction data available. No cases of severe precipitated withdrawal and no SAEs were observed. Five cases (5%) of mild-to-moderate buprenorphine-prompted withdrawal and eight cases of prolonged unrelieved withdrawal symptoms (8% overall, 21% of methadone-to-buprenorphine inductions) were reported. Buprenorphine-prompted withdrawal and prolonged unrelieved withdrawal symptoms were not associated with treatment status at week 1. CONCLUSIONS: Home buprenorphine induction was feasible and appeared safe. Induction complications occurred at expected rates and were not associated with short-term treatment drop-out.

Compressing "the sandwiched": an examination of reductionist health policies on women in Canada.

Worldwide, policymakers are critically examining the escalating costs of health care. One proposed solution has been to move away from a centralized "general hospital"-type of treatment in favor of a family-based model emphasizing health as well as treatment. While I agree that such approaches constitute an innovative outlook on health care, I draw on a social ecological approach in order to attract attention to and lay out the argument for future research examining the unacknowledged and unstudied impact that such proposed policies will have on women. Undoubtedly, it is they who will bear the brunt of the proposed health-related responsibilities offloaded by governments. I examine the implications of such proposed policies on Canadians, particularly Canadian women, although the Canadian system is but an exemplar of the changing dynamics of caregiving in a broader world situation.

Does Paid Family Leave Reduce Nursing Home Use? The California Experience.

The intent of Paid Family Leave (PFL) is to make it financially easier for individuals to take time off from paid work to care for children and seriously ill family members. Given the linkages between care provided by family members and the usage of paid services, we examine whether California's PFL program influenced nursing home utilization in California during the 1999 to 2008 period. This is the first empirical study to examine the effects of PFL on long-term care patterns. Multivariate difference-indifference estimates across alternative comparison groups provide consistent evidence that the implementation of PFL reduced the proportion of the elderly population in nursing homes by 0.5 to 0.7 percentage points. Our preferred estimate, employing an empirically-matched group of control states, finds that PFL reduced nursing home usage by about 0.65 percentage points. For California, this represents an 11 percent relative decline in elderly nursing home utilization.

Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health.

OBJECTIVE: To assess the extent to which parents of children with autism compared with parents of children with asthma or other special health care needs report receiving primary care for their child consistent with the American Academy of Pediatrics medical home model. DESIGN: Population-based cross-sectional study. SETTING: National Survey for Children's Health 2003-2004 telephone interview. PARTICIPANTS: Parents of 495 children with autism, parents of 6716 children with asthma, and parents of 11,403 children with other special health care needs without asthma. Main Exposures Autism and other special health care needs including asthma. MAIN OUTCOME MEASURES: Medical home score and components of care, as follows: personal provider and preventive; family-centered, compassionate, and culturally appropriate; accessible; comprehensive; and coordinated. RESULTS: The odds of parents reporting care consistent with that in a medical home were less likely for children with autism (odds ratio, 0.45; 95% confidence interval, 0.30-0.66) and more likely for children with asthma (odds ratio, 1.17; 95% confidence interval, 1.06-1.30) compared with children with other special health care needs (1 [reference]). These differences persisted even after controlling for condition severity, personal characteristics, and insurance status. Specific components of a medical home less prevalent among children with autism than among children with other special health care needs included family-centered, comprehensive, and coordinated care. CONCLUSION: Although we could not evaluate the reasons why, a large percentage of children with autism do not receive primary care consistent with that in a medical home.

Cuidados paliativos aplicados em idosos no domicílio / Palliative care applied to the elderly at home / Cuidados paliativos aplicados a ancianos en el hogar

Objetivo: analisar evidências científicas sobre a utilização de cuidados paliativos aplicados em idosos no domicílio. Métodos: trata-se de uma revisão sistemática de literatura, realizada em janeiro de 2020, utilizando os descritores: "cuidados paliativos/Paliative care" AND "saúde do idoso/heal thof the elderly" AND "assistência domiciliar/home care". Resultados: foram selecionados sete artigos, que emergiram as categorias: Assistência domiciliar adaptada as necessidades dos pacientes de acordo com seus recursos disponíveis; Ampliação dos resultados através do empoderamento e autonomia na participação do cuidado familiar no domicílio; Os cuidados paliativos contribuem para a melhoria dos fatores psicológicos e emocionais, enfrentamento positivo e aceitação do tratamento. Conclusão: a literatura traz uma aplicabilidade geral sem estudos que tratem de forma específica a situação do idoso. Demonstra também um aumento deliberado da necessidade de assistência permanente a estas pessoas com doenças incuráveis, necessitando de apoio holístico

Objective: to analyze scientific evidence on the use of palliative care applied to elderly people at home. Methods: this is a systematic literature review, conducted in January 2020, using the descriptors: "palliative care / Palliative care" AND "health of the elderly / heal thof the elderly" AND "home care / home care". Results: seven articles were selected, which emerged in the categories: Home care adapted to the needs of patients according to their available resources; Expansion of results through empowerment and autonomy in the participation of family care at home; Palliative care contributes to the improvement of psychological and emotional factors, positive coping and treatment acceptance. Conclusion: the literature has a general applicability without studies that specifically address the situation of the elderly. It also demonstrates a delibeate increase in the need for permanent assistance to these people with incurable diseases, requiring holistic support

Objetivo: analizar la evidencia científica sobre el uso de cuidados paliativos aplicados a personas mayores en el hogar. Métodos: esta es una revisión sistemática de la literatura, realizada en enero de 2020, utilizando los descriptores: "cuidados paliativos / cuidados paliativos" Y "salud de los ancianos / curar a los ancianos" Y "cuidado en el hogar / cuidado en el hogar". Resultados: se seleccionaron siete artículos, que surgieron en las categorías: Atención domiciliaria adaptada a las necesidades de los pacientes de acuerdo con sus recursos disponibles; Expansión de resultados a través del empoderamiento y la autonomía en la participación del cuidado familiar en el hogar; Los cuidados paliativos contribuyen a la mejora de los factores psicológicos y emocionales, el afrontamiento positivo y la aceptación del tratamiento. Conclusión: la literatura tiene una aplicabilidad general sin estudios que aborden específicamente la situación de las personas mayores. También demuestra un aumento deliberado en la necesidad de asistencia permanente a estas personas con enfermedades incurables, que requieren un apoyo integral

Changes in Medicare home health care use and practices in rural communities: 1997 to 2001.

OBJECTIVE: This research was designed to examine the impact of the interim and prospective payment systems on home health agencies and Medicare beneficiaries in rural communities. METHODS: Data were collected from two complementary studies: (a) fiscal and use data collected from 10 rural agencies in northwest Pennsylvania and (b) a statewide survey of rural home health agencies in Pennsylvania. RESULTS: The findings show that the implementation of interim and prospective payment systems had a profound affect on the home health agencies' financial vulnerability, staffing management, and service delivery. As a result, Medicare beneficiaries were also affected. The total number of home health visits per episode in rural Pennsylvania was 16 visits, whereas the national estimate was 22 visits. Physical therapy services increased 8% and occupational therapy services increased 1%, whereas visits for other disciplines decreased or remain unchanged. DISCUSSION: Future studies are needed to examine the health outcomes of beneficiaries in rural communities.

Home care for older people.

Older people receive home care either by choice or because alternative means of care are not available. The reasons for home care have an economic and cultural component; most of it is provided on a voluntary basis, regardless of the culture of the older person. Good home care, however, should not be left entirely to volunteers, but should be supported by the state through legislation and social policies, especially in the area of primary care and health promotion, as should end-of-life care. By these means some of the negative effects of home care on the recipient and the carer can be reduced.

Family caregivers making life-sustaining treatment decisions: factors associated with role strain and ease.

Although recent studies have focused on life-sustaining treatment (LST) decision-making by families, research has not examined such decision-making as an aspect of ongoing caregiving by family caregivers. This article focuses on factors associated with family caregiver role strain and ease in LST decision-making. Using content analysis, factors were derived from interview data gathered from 17 family caregivers who had made LST decisions for 16 elderly ill relatives. The factors are incorporated in a framework, The Family Caregiving Process in Making LST Decisions for Elderly Ill Relatives, and fall under four key roles--caregiver, elderly ill relative, other family members, and health care providers. Factors affecting the strain and ease felt by family caregivers exist not only during the actual decision-making period, but also arise during the days, months, and years prior to the event and continue on after the LST decisions have been made. Nurses' knowledge of these factors can help nurses decrease family caregiver strain and increase ease during the family caregiver LST decision-making process.

Care-seeking behaviour of caregivers for common childhood illnesses in Lagos Island Local Government Area, Nigeria.

BACKGROUND: The objectives were to estimate a 2-week prevalence for common childhood illnesses targeted by the National Integrated Management of Childhood Illness (IMCI) Initiative and to determine care-seeking behaviour of mothers/caregivers for these illnesses. METHODS: A cross-sectional community survey was conducted in the Lagos Island Local Government Area of Lagos State. Eligible children aged 0-5 years and their mothers/caregivers were recruited into the study by cluster-sampling technique. RESULTS: Four hundred and ninety-five children of 450 mothers were identified. Of these, 426 (86.1%) children belonging to 390 mothers/caregivers had symptoms suggestive of malaria, acute respiratory infections, diarrhoea and measles. Care was sought Outside the home at the onset of symptoms for 280 (65.7%) while 146 (34.3%) were treated at home. Of the 280 who were taken for care outside, 23 (8.2%) were taken for care at the onset of illness while the others were taken for care after an attempt at self-treatment (68.6%), use of traditional medicines (12.5%) and provision of traditional home care (10.7%). Only 65 (23.2%) of the children were taken for care within 24 hours of perceived onset of the illness. CONCLUSION: IMCI targeted childhood illnesses were prevalent and poor maternal response that could contribute to complicated outcome was identified.