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International Journal of General... 2023To investigate the family support, anxiety, depression, health-related quality of life (HRQoL), and their associations among parents and grandparents of children with...
PURPOSE
To investigate the family support, anxiety, depression, health-related quality of life (HRQoL), and their associations among parents and grandparents of children with disabilities.
METHODS
This is a cross-sectional study and a total of 327 family caregivers were included. Chi-square test, Mann-Whitney -test, and two independent -test were used to identify the intergenerational differences in sociodemographic characteristics, received family support, anxiety, depression, and HRQoL. Eight generalized linear models were developed to examine the associations in both generations.
RESULTS
Parents and grandparents were most in need of rehabilitation and financial support, but both populations received the least amount of financial support. 33.6% and 36.1% of family caregivers had the risk of anxiety and depression and found no significant intergenerational differences. As for HRQoL, intergenerational differences were found in the physical component score, but not found in the mental component score. Among parents, childcare support of respite care and household tasks assistance was negatively associated with their depression (<0.05), professional support of appropriate surgery for children (<0.05) and psychological support from professional psychologists (<0.01) were negatively associated with their anxiety and depression, psychological support from relatives and friends was negatively associated with their depression (<0.05) whereas was positively associated with their mental HRQoL (<0.01). As for grandparents, financial support for daily living expenses was negatively associated with depression (<0.05), and psychological support from families was negatively associated with depression (<0.05) whereas was positively associated with mental HRQoL (<0.05). However, no relationship was found between family support and anxiety among grandparents. Notably, no association was found between family support and physical HRQoL among both populations.
CONCLUSION
Both parents and grandparents had high risks of anxiety, depression and low levels of mental HRQoL. To efficiently improve psychological health, care providers and policymakers may consider intergenerational differences and provide targeted family support.
PubMed: 37942475
DOI: 10.2147/IJGM.S434900 -
Healthcare Policy = Politiques de Sante Oct 2023From a larger study examining policy and program information on how Canadian provinces integrate care services, this study aimed to create "priority lists" of 10-15...
INTRODUCTION
From a larger study examining policy and program information on how Canadian provinces integrate care services, this study aimed to create "priority lists" of 10-15 services that are "absolutely needed" for care integration.
METHODOLOGY
A diverse group of over 50 Canadian stakeholders participated in virtual consensus-building using the nominal group technique and a modified e-Delphi method to identify services that focused on two different groups: children and youth with high functional health needs and older adults in functional decline.
RESULTS
Three lists - containing services, processes and infrastructure elements - emerged: one per tracer condition group and a consolidated list. The latter identified the following five services as top priority for primary care integration: mental health and addictions services; home care; transition between urgent-emergency-acute care; medication reconciliation in community pharmacies; and respite care. No single social service was a clear priority, but those that mitigate material deprivation emerged within the top 10.
DISCUSSION
This humble pan-Canadian study shows that priority services in health and social services are neither well integrated nor connected to primary care. It also suggests that effective policy strategizing for primary care integration for those with complex care needs may require thinking beyond the logic of services - given their siloed organization.
Topics: Child; Adolescent; Humans; Aged; Canada; Consensus; Emergency Medical Services
PubMed: 37850703
DOI: 10.12927/hcpol.2023.27181 -
Health Affairs (Project Hope) Feb 2024On a single night in 2023, more than 653,000 people experienced homelessness in the United States. In this overview, we highlight structural and individual risk factors...
On a single night in 2023, more than 653,000 people experienced homelessness in the United States. In this overview, we highlight structural and individual risk factors that can lead to homelessness, explore evidence on the relationship between homelessness and health, discuss programmatic and policy innovations, and provide policy recommendations. Health system efforts to address homelessness and improve the health of homeless populations have included interventions such as screening for social needs and medical respite programs. Initiatives using the Housing First approach to permanent supportive housing have a strong track record of success. Health care financing innovations using Medicaid Section 1115 waivers offer promising new approaches to improving health and housing for people experiencing homelessness. To substantially reduce homelessness and its many adverse health impacts, changes are needed to increase the supply of affordable housing for households with very low incomes. Health care providers and systems should leverage their political power to advocate for policies that scale durable, evidence-based solutions to reduce homelessness, including increased funding to expand housing choice vouchers and greater investment in the creation and preservation of affordable housing.
Topics: Humans; United States; Ill-Housed Persons; Housing; Policy; Medicaid
PubMed: 38315930
DOI: 10.1377/hlthaff.2023.01049 -
Nursing Reports (Pavia, Italy) Apr 2024: Chronic non-communicable diseases, including diseases of mental origin such as Alzheimer's, affect all age groups and countries. These diseases have a major impact on... (Review)
Review
: Chronic non-communicable diseases, including diseases of mental origin such as Alzheimer's, affect all age groups and countries. These diseases have a major impact on the patient and their family environment. It is interesting that different questionnaires are measured in the same direction, given that different health questionnaires are used to measure caregiver burden. : To identify which type of intervention is the most appropriate to improve the health of the primary caregiver in patients with dementia. To understand the role played by the nurse within multidisciplinary teams and to know whether the different questionnaires used in the studies measure caregiver health in the same direction. : A systematic search of the published and gray literature was carried out without restriction of the language used in the studies. Caregiver burden of patients with dementia, receiving an intervention to improve caregiver burden, was assessed. Standardized mean difference was used as the effect size measure, and there were possible causes of heterogeneity in the effect size. : In total, 1512 records were found, and 39 articles with 4715 participants were included. We found individual information with an effect of 0.48 (CI95%: 0.18; 0.79; I2 = 0%); group therapy with an effect of 0.20 (CI95%: 0.08; 0.31; I2 = 6%); workshops with an effect of 0.21 (CI95%: 0.01; I2 = 48%) and 0.32 (CI95%: 0.01; 0.54; I2 = 0%) when a nurse intervenes; respite care with an effect of 0.22 (CI95%: 0.05; 0.40; I2 = 66%); individual therapy with an effect of 0.28 (CI95%: 0.15; 0.4; I2 = 68%); and support groups with an effect of 0.07 (CI95%: 0; 0.15; I2 = 78%). : The magnitude of the effects of the interventions has been low-moderate. Different instruments are not associated with the magnitude of the effect. The presence of nurses improves the effect of the intervention on caregivers when it is carried out in the form of workshops.
PubMed: 38651483
DOI: 10.3390/nursrep14020071 -
Journal of Palliative Medicine Jan 2024Despite the increased number of people living with Alzheimer's disease and related dementias (PLWD), limited early palliative care interventions exist for this...
Despite the increased number of people living with Alzheimer's disease and related dementias (PLWD), limited early palliative care interventions exist for this population. Adapting promising interventions for other progressive disease conditions may address this need. Few published studies have examined this topic using recognized adaptation frameworks. To systematically adapt a nurse-led palliative care intervention for people with idiopathic pulmonary fibrosis and caregivers (A Program of SUPPORT™) for PLWD and caregivers before pilot/feasibility testing. The Step Framework guided the transformation of A Program of SUPPORT™ to A Program of SUPPORT-D™ (dementia). The Step Framework was modified to include key stakeholder feedback on the initial intervention adaptation using a qualitative approach with semistructured interviews conducted with 5 community support professionals (respite care leaders and staff) and 10 caregivers from the Southeastern United States. A prioritization matrix was created to analyze qualitative feedback and inform intervention refinements. Data were collected between November 2021 and March 2022. The modified Step Framework was a feasible guide for intervention adaptation. Three main themes emerged: organization, terminology, and content. Eight subthemes were identified within the content theme: strategies for providing care, planning ahead, understanding the illness, resources, safety, symptom management, social support, and self-management. Moreover, all participants provided largely positive feedback for the initial adaptation including over 200 suggestions for revision. Majority of participants suggested revising existing adapted content rather than including additional new content. The prioritization matrix was very useful in guiding additional intervention refinements, incorporating suggestions deemed highly important and improving the clarity of SUPPORT-D™. Adapting existing interventions for use by PLWD and caregivers is a practical approach that can increase the speed of translation of applicable and effective interventions used in other populations. Early feedback, prioritized using a matrix, helped further refine the initial adaptation.
Topics: Humans; Palliative Care; Nurse's Role; Alzheimer Disease; Caregivers; Social Support
PubMed: 37819751
DOI: 10.1089/jpm.2023.0324 -
Journal of Aging Studies Jun 2024Ageing in place is an imminent concern for both older couples and communities. Identifying ways to support ageing in place is required to meet the needs and challenges...
Ageing in place is an imminent concern for both older couples and communities. Identifying ways to support ageing in place is required to meet the needs and challenges of older couples and social services systems. Through focus groups with a total of 46 participants and a constant comparative methodology, this study aimed to explore and describe the experiences and reasoning of spousal carers, healthcare professionals, and stakeholders regarding possibilities for older couples to age in place. The findings consisted of one main category, 'Facilitating ageing in place is a win-win situation with challenges' and four interrelated categories, 'Focus on older couples - building relationships and providing adequate services', 'Engaged civil society as a source of care and social inclusion,' 'Motivated professionals with competence and time,' and 'Services working together for a sustainable society,' that present possibilities and challenges for ageing in place. This study suggests that facilitating ageing in place is possible but involves a complex series of challenges that can be linked to different contexts ranging from individuals and couples to civil society, services provided, organisational systems, and existing resources. All these aspects need to be considered and balanced to achieve a situation that contributes to older couples' possibilities to age in place as well as to a sustainable society.
Topics: Humans; Aged; Female; Male; Focus Groups; Independent Living; Caregivers; Aging; Spouses; Aged, 80 and over; Middle Aged; Social Support; Health Personnel
PubMed: 38834252
DOI: 10.1016/j.jaging.2024.101229 -
Academic Emergency Medicine : Official... Apr 2024Persons living with dementia (PLWD) experience frequent and costly emergency department (ED) visits, with poor outcomes attributed to suboptimal care and postdischarge...
BACKGROUND
Persons living with dementia (PLWD) experience frequent and costly emergency department (ED) visits, with poor outcomes attributed to suboptimal care and postdischarge care transitions. Yet, patient-centered data on ED care experiences and postdischarge needs are lacking. The objective of this study was to examine the facilitators and barriers to successful ED care and care transitions after discharge, according to PLWD and their caregivers.
METHODS
We conducted a qualitative study involving ED patients ages 65 and older with confirmed or suspected dementia and their caregivers. The semistructured interview protocol followed the National Quality Forum's ED Transitions of Care Framework and addressed ED care, care transitions, and outpatient follow-up care. Interviews were conducted during an ED visit at an urban, academic ED. Traditional thematic analysis was used to identify themes.
RESULTS
We interviewed 11 patients and 19 caregivers. Caregivers were more forthcoming than patients about facilitators and challenges experienced. Characteristics of the patients' condition (e.g., resistance to care, forgetfulness), the availability of family resources (e.g., caregiver availability, primary care access), and system-level factors (e.g., availability of timely appointments, hospital policies tailored to persons with dementia) served as facilitators and barriers to successful care. Some resources that would ameliorate care transition barriers could be easily provided in the ED, for example, offering clear discharge instructions and care coordination services and improving patient communication regarding disposition timeline. Other interventions would require investment from other parts of the health care system (e.g., respite for caregivers, broader insurance coverage).
CONCLUSIONS
ED care and care transitions for PLWD are suboptimal, and patient-level factors may exacerbate existing system-level deficiencies. Insight from patients and their caregivers may inform the development of ED interventions to design specialized care for this patient population. This qualitative study also demonstrated the feasibility of conducting ED-based studies on PLWD during their ED visit.
PubMed: 38590030
DOI: 10.1111/acem.14898 -
The Gerontologist Feb 2024Little is known about how race/ethnicity and geographic context relate to support service use among dementia caregivers. Our objectives were to investigate (a) whether...
BACKGROUND AND OBJECTIVES
Little is known about how race/ethnicity and geographic context relate to support service use among dementia caregivers. Our objectives were to investigate (a) whether the use of at least one formal caregiving service-support groups, respite care, and training-differed by race/ethnicity and across metro and nonmetro areas; and (b) whether predisposing, enabling, and need characteristics influenced support service use by race/ethnicity.
RESEARCH DESIGN AND METHODS
Data were analyzed from a sample of primary caregivers of care recipients aged 65 years or older with probable dementia (n = 482) in the 2017 National Health and Aging Trends Study and National Study of Caregiving. We calculated weighted prevalence estimates and then used the Hosmer-Lemeshow goodness of fit statistic to find the best-fitting logistic regression models.
RESULTS
Among minority dementia caregivers, support service use was higher in metro than nonmetro areas (35% and 15%); the trend was reversed for non-Hispanic White caregivers (47% nonmetro and 29% metro). The best-fitting regression models included predisposing, enabling, and need factors for both minority and non-Hispanic White caregivers. Younger age and more disagreement within the family were consistently associated with more service use in both groups. Among minority caregivers, better caregiver and care recipient health were associated with using support services. Among non-Hispanic White caregivers, nonmetro geographic context and caregiving interfering with valued activities were associated with using support services.
DISCUSSION AND IMPLICATIONS
Geographic context differently affected support service use and the influence of predisposing, enabling, and need factors varied by race/ethnicity.
Topics: Humans; Caregivers; Aging; Health Services; Ethnicity; Dementia
PubMed: 37318017
DOI: 10.1093/geront/gnad067 -
Journal of Applied Gerontology : the... Feb 2024This study examines when and why unpaid caregivers use respite services. We conducted a secondary analysis of the 2017 National Study of Caregiving (NSOC) Wave III, a...
This study examines when and why unpaid caregivers use respite services. We conducted a secondary analysis of the 2017 National Study of Caregiving (NSOC) Wave III, a U.S. nationally representative sample comprising 2652 unpaid caregivers. We found that unpaid caregivers reporting financial, physical, and emotional difficulties in caregiving were more likely to use respite care services than those not reporting these challenges. White, non-Hispanic caregivers reporting that they received support from their social networks (families/friends) were more likely to use respite care services than non-White and/or Hispanic caregivers receiving such support. Non-White and/or Hispanic caregivers who belonged to or attended support groups were more likely to use respite care support than those without social group affiliation. Respite care is underutilized in the U.S. despite its value and efficacy in supporting caregivers' mental and physical well-being. Policies are necessary to increase availability and access to respite services for diverse unpaid caregivers.
PubMed: 38298084
DOI: 10.1177/07334648241229574 -
Healthcare (Basel, Switzerland) Aug 2023In this qualitative study, we provided an in-depth understanding of how Community-Integrated Intermediary Care (CIIC), a new service model for family-based long-term...
Towards Cultural Adequacy of Experience-Based Design: A Qualitative Evaluation of Community-Integrated Intermediary Care to Enhance the Family-Based Long-Term Care for Thai Older Adults.
In this qualitative study, we provided an in-depth understanding of how Community-Integrated Intermediary Care (CIIC), a new service model for family-based long-term care (LTC), was perceived by its users. The CIIC, established in Chiang Mai, Northern Thailand, consisted of three main interventions: (1) A temporary respite care center; (2) A family-centered care capacity building; (3) Functional training delivered as community group exercise and home exercise to improve healthy ageing for independent older adults. Ten pairs of dependent Thai older adults, their primary family caregivers, and ten village health volunteers were recruited using the purposive sampling method. Data were collected via semistructured in-depth interviews. A thematic descriptive qualitative analysis was used for data analysis. The findings revealed that CIIC helped reduce the burden of family caregivers by providing respite, relief, and care coordination. The experiences of the CIIC users indicated possibilities for service redesign, development, and delivery strategies to better meet the LTC needs of older adults and family caregivers. Following the local stakeholders' commitment and local community health volunteers' network, a well-integrated formal and informal care CIIC model can be implied as an effective and sustainable ageing care service model in Thailand and other Asian countries in the future.
PubMed: 37570457
DOI: 10.3390/healthcare11152217