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Journal of Evaluation in Clinical... Apr 2024Nursing homes (also referred to as residential aged care facilities, or long-term care facilities) cater for older people on a respite or long-term basis for those who...
UNLABELLED
Nursing homes (also referred to as residential aged care facilities, or long-term care facilities) cater for older people on a respite or long-term basis for those who are no longer able to live independently at home. Globally the sector struggles to meet societal expectations since it is torn between three competing agendas-meeting the needs of residents, meeting the demands of regulators, and meeting the financial imperatives of nursing home proprietors. Competing demands indicate that the system lacks a clear understanding of its purpose-without a clearly understood purpose any system will become dysfunctional overall and across all its levels of organisation. This scoping study aims to summarise and synthesise what is already known about the systemic function and failures in the nursing home system, and the impact this has on the wider health and aged care system.
METHOD
MEDLINE, EMBASE, PSYCHINFO, CINAHL and SCOPUS were searched using the terms: (nursing home care OR residential aged care OR nursing home) AND (organisational failure OR institutional failure OR systemic failure), limited to English language articles, including all years up to the end of February 2021. In addition, we used snowballing of article references and Google searches of the grey literature. System-focused articles were defined as those that explored how an issue at one system level impacted other system levels, or how an issue impacted at least two different agents at the same system level.
RESULT
Thirty-eight articles addressed systemic issues as defined in four different contexts: United States (14), Canada (2), Australia (11) and European countries (11). Only four studies reported whole-of-system findings, whereas the remaining 34 more narrowly addressed systemic features of specific nursing home issues. The thematic analysis identified 29 key systemic issues across five system layers which consistently appear across every country/health system context. The negative outcomes of these systemic failings include: high rates of regulatory reprimands for unacceptable or unsafe practices; dissatisfaction in care experiences on the part of residents, families, and care staff-including a fear of being sent to a nursing home; and the perception amongst staff that nursing homes are not preferred places to work.
CONCLUSIONS
The key issues affecting nursing home residents, and the care home sector more generally, are systemic in nature arising from two key issues: first, the lack of shared agreement on the care home system's purpose; and second, the lack of clear governance and accountability frameworks for system regulation and performance at a national level. Addressing these two key issues must be the starting point for any 'real' nursing home system redesign that can achieve a seamlessly integrated system that delivers the outcomes nursing home residents and their families expect. 'Systems thinking' is required to simultaneously improve care quality and outcomes for residents, strengthen regulation and accountability, and enable financial viability.
Topics: Aged; Humans; Nursing Homes; Homes for the Aged; Palliative Care; Quality of Health Care; Australia
PubMed: 38258966
DOI: 10.1111/jep.13961 -
International Journal of Nursing Studies Jul 2024To identify and categorize home- and community-based services used by older adults and the distribution of their utilization, and to examine their utilization patterns... (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
To identify and categorize home- and community-based services used by older adults and the distribution of their utilization, and to examine their utilization patterns in terms of region, time trends, and older adults' characteristics.
DESIGN
Systematic review and meta-analysis.
METHODS
We conducted a systematic search of six databases for studies published up to January 12, 2023, and performed meta-analyses and subgroup analyses to identify the utilization of home- and community-based services and analyze utilization patterns concerning region, time trends, and individual characteristics.
RESULTS
We included 42 studies from 10 countries worldwide, involving a total of 2,942,069 older adults. Home- and community-based services were grouped into three categories: health services, social services, and family caregiver services. Regional differences were consistently evident across all three categories of services, reflecting diverse patterns of home- and community-based service adoption worldwide. Notably, there was a significant increase in the utilization of social services, as distinct from health services and family caregiver services, during the post-2010 period (2010-2018) in comparison with the pre-2010 period (before 2010). In addition, age and cognitive function also played an important role in the utilization of home- and community-based services.
CONCLUSION
These findings highlight the importance of tailoring home- and community-based services to specific populations and understanding the needs of older adults over time. Further research should be undertaken to gain a deeper understanding of the reasons behind these variations and differences and to provide more targeted and effective services to older adults worldwide.
Topics: Humans; Aged; Home Care Services; Community Health Services
PubMed: 38703696
DOI: 10.1016/j.ijnurstu.2024.104774 -
BMC Nursing Jan 2024As China's population ages, the demand for care for the disabled elderly is increasing, and family caregivers find it challenging to meet the comprehensive care needs of...
A qualitative study on the willingness and influencing factors of master of geriatric nursing specialist postgraduates to volunteer for home respite care for disabled elderly families.
BACKGROUND
As China's population ages, the demand for care for the disabled elderly is increasing, and family caregivers find it challenging to meet the comprehensive care needs of the disabled elderly. Through home respite services, families of the disabled elderly can receive help and support from specialized nursing professionals to ease the burden on family caregivers and provide high-quality services. This study explores the willingness and influencing factors of Master of Geriatric Nursing Specialist postgraduates in China to volunteer to provide home respite services for disabled elderly individuals.
METHODS
A qualitative study based on Grounded Theory used Strauss and Corbin's programmatic version. A purposive sampling method was employed to conduct semi-structured interviews with 12 Master of Geriatric Nursing Specialist postgraduates from a tertiary hospital in Changsha, Hunan Province, China.
RESULTS
The willingness of Master of Geriatric Nursing Specialist postgraduates to volunteer to provide home respite services for the disabled elderly was established as a core category, which was influenced by three main categories: personal factors, service object factors, and social factors, and nine categories formed from 39 initial concepts were included under the main category.
CONCLUSIONS
Influenced by China's traditional cultural background, Master of Geriatric Nursing Specialist postgraduates in China have shown high motivation in volunteering to provide home respite services for the families of the disabled elderly but have been challenged by several challenges from China's healthcare environment and education system. Relevant departments need to adopt a series of policies and measures to increase volunteers' willingness to participate in respite care and promote its development.
PubMed: 38233888
DOI: 10.1186/s12912-024-01710-9 -
Allergy, Asthma & Immunology Research Nov 2023Primary ciliary dyskinesia (PCD) is a genetically heterogeneous disorder that leads to secondary ciliary dysfunction. PCD is a rare disease, and data on it are limited...
PURPOSE
Primary ciliary dyskinesia (PCD) is a genetically heterogeneous disorder that leads to secondary ciliary dysfunction. PCD is a rare disease, and data on it are limited in Korea. This study systematically evaluated the clinical symptoms, diagnostic characteristics, and treatment modalities of pediatric PCD in Korea.
METHODS
This Korean nationwide, multicenter study, conducted between January 2000 and August 2022, reviewed the medical records of pediatric patients diagnosed with PCD. Prospective studies have been added to determine whether additional genetic testing is warranted in some patients.
RESULTS
Overall, 41 patients were diagnosed with PCD in 15 medical institutions. The mean age at diagnosis was 11.8 ± 5.4 years (range: 0.5 months-18.9 years). Most patients (40/41) were born full term, 15 (36.6%) had neonatal respiratory symptoms, and 12 (29.3%) had a history of admission to the neonatal intensive care unit. The most common complaint (58.5%) was chronic nasal symptoms. Thirty-three patients were diagnosed with transmission electron microscopy (TEM) and 12 patients by genetic studies. TEM mostly identified outer dynein arm defects (alone or combined with inner dynein arm defects, n = 17). The genes with the highest mutation rates were (3 cases) and (3 cases). Rare genotypes (, , ) were found as well. Chest computed tomography revealed bronchiectasis in 33 out of 41 patients. Among them, 15 patients had a PrImary CiliAry DyskinesiA Rule score of over 5 points.
CONCLUSIONS
To our knowledge, this is the first multicenter study to report the clinical characteristics, diagnostic methods, and genotypes of PCD in Korea. These results can be used as basic data for further PCD research.
PubMed: 37957793
DOI: 10.4168/aair.2023.15.6.757 -
PloS One 2023The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate...
The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate out-of-pocket costs for people with CP and their families by age and gross motor function classification system (GMFCS) level; 2) measure financial distress. A cross-sectional quantitative survey design was used with qualitative approaches to analyse open-ended questions. A CP-specific out-of-pocket costs survey was co-designed with people with lived experience. Adults with CP and carers were recruited from Australian population-based CP Registers and via social media. Sociodemographic variables were analysed descriptively and median (IQR) expenses for health, assistive technology, personal care, housing, occupation, transport, leisure, respite and holidays, by age (0-6; 7-17; 18 years +) and gross motor function [GMFCS level I-II vs III-V] were calculated. The In Charge Financial Distress/Financial Wellbeing Scale measured financial distress. Regression analyses were conducted to investigate costs and financial distress. Additional out-of-pocket costs itemised in open-ended questions were charted. Comments were thematically analysed using the framework approach. 271 surveys were completed for children 0-6 years (n = 47), children/adolescents 7-17 years (n = 124) and adults (n = 100). 94% of participants had out-of-pocket costs associated with CP, with an overall annual median of $4,460 Australian dollars (IQR $11,955). After controlling for income, private insurance and disability funding, the GMFCS III-V group had costs two times higher than the GMFCS I-II group (2.01; 95% CI 1.15-3.51). Age was not significantly associated with costs. 36% of participants had high to overwhelming financial distress; this was not associated with age or GMFCS level after controlling for financial factors. Families had several additional disability costs. Open-ended responses revealed experiences of financial concern were influenced by funding scheme experiences, reduced income, uncertainty, access to support networks and an inability to afford CP-related costs. Cost estimates and financial distress indicators should inform policy, funding and clinical decisions when planning interventions to support people with CP and their families.
Topics: Child; Adult; Adolescent; Humans; Cerebral Palsy; Cross-Sectional Studies; Health Expenditures; Australia; Leisure Activities
PubMed: 37471345
DOI: 10.1371/journal.pone.0288865 -
Scandinavian Journal of Caring Sciences Mar 2024COVID-19 has increased pressures on caregivers, disruptions to health services and increased health concerns during COVID-19. Reports have been made on informal carers'...
BACKGROUND
COVID-19 has increased pressures on caregivers, disruptions to health services and increased health concerns during COVID-19. Reports have been made on informal carers' increased workload and limited support services during the pandemic.
AIMS
This study aimed to explore how informal caregivers experienced their well-being during COVID-19 through online discussion forums.
MATERIALS AND METHODS
A reflexive thematic analysis characterised by theoretical flexibility, organic inductive coding processes and theme development was conducted on online discussion forums. The method highlighted theme reviewing which was done twice to encourage data reflection. The project was conducted on a novel topic which was a new area of research interest. Semantic coding where participants' words were used directly in the interpretation and construction of themes was used.
RESULTS
In the theme 'Locked in or locked away' caregivers worried about continuing care at home, due to limited freedom and worries of hiring help during a pandemic. Some expressed worries about visitation rights and grief of not being present with a loved one if they would reside in a care home. The theme 'Nothing left to give' suggested that COVID-19 exasperated caregivers' loneliness, social isolation and increased responsibilities and challenges with other roles. Bitterness, resentment and anger were felt towards lack of social support and workload. Theme 'Celebrating a virtual way of life' described how caregivers used online forums when other support services were disrupted.
DISCUSSION
We discuss the role of informal caregiver that was described as all-encompassing during COVID-19. We highlight the importance of advanced planning for care home transitions and the use of online forums as a form of support. We suggest further exploration into informal caregivers' role balancing.
CONCLUSION
COVID-19 seemed to affect informal caregivers negatively, but they reframed their situations and sought online support. With COVID-19-related restrictions and increased workload, COVID-19 added an all-or-nothing aspect to care home transition decisions.
Topics: Humans; Caregivers; COVID-19; Social Support; Emotions; Patient Transfer
PubMed: 37522268
DOI: 10.1111/scs.13199 -
International Ophthalmology Aug 2023The aim of this study was to improve cosmesis in patients with corneal opacity (CO) using newer organic micronized pigments.
PURPOSE
The aim of this study was to improve cosmesis in patients with corneal opacity (CO) using newer organic micronized pigments.
METHODS
Settings: Tertiary Care eye center, Design: Retrospective study.
INCLUSION CRITERIA
Patients with unsightly corneal scars not suitable for keratoplasty, eccentric corneal opacity not requiring keratoplasty, or lenticular opacity/anterior or posterior capsular opacities in non-seeing eyes. Micronized organic pigment was used for keratopigmentation by the intrastromal pocket technique (ISPT) in deep corneal opacities and lenticular opacities, whereas the intrastromal needle puncture technique (ISNT) was used in superficial opacities or corneoiridic scars. The records of 463 patients were reviewed and analyzed for the duration of the past 7 years.
RESULTS
Two hundred and ninety-three (63.2%) patients underwent ISNT, eight underwent combined technique, and the rest underwent ISPT. The postoperative follow-up period showed more watering and redness in the needle puncture technique (p > 0.001), which resolved in 70.4% of patients by the end of 4 weeks. Repeat procedures were required in 5.3% of the patients with ISNT. The patient's satisfaction grading showed excellent levels in 375 (80.9%) patients, 45 (9.7%) had good satisfaction levels, and the rest had average satisfaction levels.
CONCLUSION
Intrastromal keratopigmentation is a boon for unsightly corneal scars and gives respite to the patients from the social stigma.
Topics: Humans; Corneal Stroma; Tattooing; Retrospective Studies; Corneal Opacity; Corneal Transplantation; Coloring Agents; Cataract; Corneal Injuries
PubMed: 37227618
DOI: 10.1007/s10792-023-02700-7 -
The Journals of Gerontology. Series A,... Feb 2024Respite care provides short-term relief for caregivers. Despite efforts to promote respite use among Black caregivers, little is known if disparities in respite use...
BACKGROUND
Respite care provides short-term relief for caregivers. Despite efforts to promote respite use among Black caregivers, little is known if disparities in respite use between Black and White dementia caregivers have decreased over time. We examined a trend nationally to see if more recent efforts may have helped reduce disparities in respite use.
METHODS
We used a repeated cross-sectional design, with the data from 2015, 2017, and 2021 of the National Health and Aging Trends Study and National Study of Caregiving. Our study sample included 764 (in 2015), 839 (in 2017) and 521 (in 2021) non-Hispanic White and Black caregivers who provided care to older adults living with dementia, representing weighted 5,157,569 (2015), 5,877,997 (2017), and 4,712,144 (2021) dementia caregivers nationally. We conducted logistic regression models to assess the differences in respite use between White and Black caregivers over time.
RESULTS
In 2015, Black dementia caregivers had a respite care use rate 11.6 percentage points (95% CI: -16.9 to -6.4) lower than that of White dementia caregivers. However, both in 2017 and 2021, the difference in the use of respite was not statistically significant, leading to a reduced or no gap in respite use between White and Black dementia caregivers. However, respite use remained low in both groups.
CONCLUSIONS
Although the gap in respite use between Black and White dementia caregivers had been gradually narrowed over time, more efforts are needed to encourage more respite use among both groups through targeted efforts to address factors that hinder respite use.
PubMed: 38306603
DOI: 10.1093/gerona/glae036 -
International Journal of Aging & Human... Mar 2024The rate of usage of community elderly care services in China is low, and past studies about the effects of these services on caregiver burden domestically are few. This...
The rate of usage of community elderly care services in China is low, and past studies about the effects of these services on caregiver burden domestically are few. This study used a large sample of Beijing census data ( = 55,634) to examine the impact of these services on caregiver burden. Logistic regression and propensity score matching were used to estimate the effects. The results showed that meal assistance, respite care, and spiritual comfort are all significantly associated with a lower likelihood of perceived emotional burden among caregivers, while only respite care is very significantly associated with a lower likelihood of feeling physically burdened. However, the effects of these services on caregiver burden also depend on the activities of daily living performance and location of residence of the care recipients. The practical implications for policy makers are discussed.
PubMed: 38460958
DOI: 10.1177/00914150241238140 -
International Journal of Geriatric... Jun 2024In India, globalisation is purported to have contributed to shifting family structures and changing attitudes to long-term care (LTC) facility use. We investigated the...
OBJECTIVES
In India, globalisation is purported to have contributed to shifting family structures and changing attitudes to long-term care (LTC) facility use. We investigated the attitudes to and usage frequency of LTC in India.
METHODS
We conducted secondary analyses of: (a) The Moving Pictures India Project qualitative interviews with 19 carers for people with dementia and 25 professionals, collected in 2022, exploring attitudes to LTC; and (b) The Longitudinal Ageing Study in India (LASI) 2017-2018, cross-sectional survey of a randomised probability sample of Indian adults aged 45+ living in private households.
RESULTS
We identified three themes from qualitative data: (1) LTC as a last resort, describes how LTC could be acceptable if care at home was "impossible" due to the person's medical condition or unavailability of the family carer, for example, if family members lived overseas or interstate. (2) Social expectations of care at home from family members and paid carers and; (3) Limited availability of LTC facilities in India, especially in rural localities, and the financial barriers to their use. Of 73,396 LASI participants, 40 were considering moving to LTC; 18,281 had a parent alive, of whom 9 reported that their father, and 16 that their mother, lived in LTC. LTC use was rare. While a third of participants with a living parent lived in urban areas, 14/24 of those with a parent in LTC lived in an urban area, supporting our qualitative findings that LTC is mainly accessed in urban areas.
CONCLUSIONS
Preference for intergenerational community care combined with limited availability and societal stigma contribute to low rates of LTC use among Indian families. Future social policies should consider how to plan for greater equity in strengthening care at home and in the community, and bolstering respite and LTC services as a last resort.
Topics: Humans; India; Female; Long-Term Care; Male; Middle Aged; Aged; Caregivers; Qualitative Research; Cross-Sectional Studies; Dementia; Longitudinal Studies; Aged, 80 and over
PubMed: 38822577
DOI: 10.1002/gps.6107