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The Medical Journal of Australia Jul 2024To characterise the socio-demographic characteristics, aged and health care needs, and aged care services used by older Aboriginal and Torres Strait Islander people...
OBJECTIVE
To characterise the socio-demographic characteristics, aged and health care needs, and aged care services used by older Aboriginal and Torres Strait Islander people assessed for aged care service eligibility.
STUDY DESIGN
Population-based retrospective cohort study; analysis of Registry of Senior Australians (ROSA) National Historical Cohort data.
SETTING, PARTICIPANTS
Aboriginal and Torres Strait Islander people aged 50 years or older who were first assessed for aged care service eligibility (permanent residential aged care, home care package, respite care, or transition care) during 1 January 2017 - 31 December 2019.
MAJOR OUTCOME MEASURES
Socio-demographic and aged care assessment characteristics; health conditions and functional limitations recorded at the time of the assessment; subsequent aged care service use.
RESULTS
The median age of the 6209 people assessed for aged care service eligibility was 67 years (interquartile range [IQR], 60-75 years), 3626 were women (58.4%), and 4043 lived in regional to very remote areas of Australia (65.1%). Aboriginal health workers were involved in 655 eligibility assessments (10.5%). The median number of health conditions was six (IQR, 4-8); 6013 (96.9%) had two or more health conditions, and 2592 (41.8%) had seven or more. Comorbidity was most frequent among people with mental health conditions: 597 of 1136 people with anxiety (52.5%) and 1170 of 2416 people with depression (48.5%) had seven or more other medical conditions. Geriatric syndromes were recorded for 2265 people (36.5%); assistance with at least one functional activity was required by 6190 people (99.7%). A total of 6114 people (98.5%) were approved for at least one aged care service, 3218 of whom (52.6%) subsequently used these services; the first services used were most frequently home care packages (1660 people, 51.6%).
CONCLUSION
Despite the high care needs of older Aboriginal and Torres Strait Islander people, only 52% used aged care services for which they were eligible. It is likely that the health and aged care needs of older Aboriginal and Torres Strait Islander people are not being adequately met.
Topics: Humans; Native Hawaiian or Other Pacific Islander; Female; Male; Retrospective Studies; Aged; Middle Aged; Australia; Eligibility Determination; Health Services, Indigenous; Health Services for the Aged; Aged, 80 and over; Australian Aboriginal and Torres Strait Islander Peoples
PubMed: 38946633
DOI: 10.5694/mja2.52353 -
BMC Health Services Research Jun 2024As the world population is aging, considerable efforts need to be put towards developing and maintaining evidenced-based care for older adults. Respite services are part... (Review)
Review
BACKGROUND
As the world population is aging, considerable efforts need to be put towards developing and maintaining evidenced-based care for older adults. Respite services are part of the selection of homecare offered to informal caregivers. Although current best practices around respite are rooted in person centeredness, there is no integrated synthesis of its flexible components. Such a synthesis could offer a better understanding of key characteristics of flexible respite and, as such, support its implementation and use.
METHODS
To map the literature around the characteristics of flexible at-home respite for informal caregivers of older adults, a scoping study was conducted. Qualitative data from the review was analyzed using content analysis. The characterization of flexible at-home respite was built on three dimensions: WHO, WHEN and HOW. To triangulate the scoping results, an online questionnaire was distributed to homecare providers and informal caregivers of older adults.
RESULTS
A total of 42 documents were included in the review. The questionnaire was completed by 105 participants. The results summarize the characteristics of flexible at-home respite found in the literature. Flexibility in respite can be understood through three dimensions: (1) WHO is tendering it, (2) WHEN it is tendered and (3) HOW it is tendered. Firstly, human resources (WHO) must be compatible with the homecare sector as well as being trained and qualified to offer respite to informal caregivers of older adults. Secondly, flexible respite includes considerations of time, duration, frequency, and predictability (WHEN). Lastly, flexible at-home respite exhibits approachability, appropriateness, affordability, availability, and acceptability (HOW). Overall, flexible at-home respite adjusts to the needs of the informal caregiver and care recipient in terms of WHO, WHEN, and HOW.
CONCLUSION
This review is a step towards a more precise definition of flexible at-home respite. Flexibility of homecare, in particular respite, must be considered when designing, implementing and evaluating services.
Topics: Humans; Caregivers; Respite Care; Aged; Home Care Services; Surveys and Questionnaires; Qualitative Research; Female
PubMed: 38926712
DOI: 10.1186/s12913-024-11058-0 -
Professional Case Management Jun 2024Care coordination occurring across multiple sectors of care, such as when professionals in health or social service organizations collaborate to transition patients from...
PURPOSE OF STUDY
Care coordination occurring across multiple sectors of care, such as when professionals in health or social service organizations collaborate to transition patients from hospitals to community-based settings like homeless shelters, happens regularly in practice. While health services research is full of studies on the experiences of case management and care coordination professionals within health care settings, few studies highlight the perspective of nonclinical homeless service providers (HSPs) in coordinating care transitions.
PRIMARY PRACTICE SETTING
This study explores the experience of nonclinical HSPs, employed in a large homeless service agency in New York, United States, responsible for coordinating care transitions of patients presenting to a homeless shelter after hospitalization, with attention to COVID-19 impact.
METHODOLOGY AND SAMPLE
Semi-structured interviews were conducted with providers at three hierarchical levels (frontline, managerial, and executive). The data were analyzed using qualitative content analysis. The implementation science framework Normalization Process Theory was used to structure semi-deductive coding categories.
RESULTS
The findings included three major themes that highlight promoting and inhibiting factors in care coordination, including a reliance on informal relationships, the impact of strong hierarchical structures, and a lack of collaborative cross-sector information exchange pathways. Altogether, findings offer insights from an infrequently studied professional group engaging in cross-sector care coordination for a high-risk population. Operational insights can inform future research to ensure that the implementation of interventions to improve cross-sector care coordination is evidence-based.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE
This study of nonclinical HSPs facilitating care transitions demonstrates the importance of understanding this critical provider population. Opportunities for acute care case managers and administrators include the importance of relationships, reciprocal education on the differences in work settings, and the need for administrative structure to ensure complex clinical information is effectively translated.
PubMed: 38913832
DOI: 10.1097/NCM.0000000000000754 -
German Medical Science : GMS E-journal 2024Telephone counseling is an important form of support for informal carers of persons with dementia. The quality and benefit of this kind of service have rarely been...
BACKGROUND
Telephone counseling is an important form of support for informal carers of persons with dementia. The quality and benefit of this kind of service have rarely been evaluated in Germany.
METHODS
We developed a survey to assess the quality of telephone counseling. We conducted an online survey among 201 users of the telephone hotline "Alzheimer-Telefon" (Alzheimer's telephone service) provided by the German Alzheimer's Association after the consultation. The aim of the study was to determine whether this form of telephone support meets certain quality criteria and the callers' needs.
RESULTS
Of the 201 participants, 80% were female. The mean age of the callers was 51 years. 74% of cases were one-off consultations; 26% of the callers sought advice twice or more often. The most common reasons for calling included behavioral changes (45%) and finding a nursing home (41%). Other family members were significantly (p=0.036) more likely to seek local respite options. Based on the 201 online questionnaires evaluated, most callers were highly satisfied with the counseling services provided by the Alzheimer's telephone service. Those seeking advice were particularly satisfied with the appreciative and empathetic communication style of the advisors and their professional competence. This also applies to the accessibility of the telephone. More than three quarters were fully satisfied with the information they received. Almost half of the callers were sure that the advice would help to solve their issue. 14% of people seeking advice were uncertain about how to implement the suggested solutions.A further survey would be worthwhile to determine to what extent the topics of the consultation can be implemented. The feedback from relatives who use the Alzheimer's telephone repeatedly could be used for this purpose - the repetition rate is currently 25% and the trend is rising. Results could be interesting for successful counseling and for the development of further support services.
CONCLUSION
The telephone hotline is a useful component of dementia care in Germany and an important contribution to the National Dementia Strategy.
Topics: Humans; Female; Male; Middle Aged; Alzheimer Disease; Germany; Caregivers; Counseling; Aged; Hotlines; Telephone; Adult; Surveys and Questionnaires; Social Support; Self Care; Patient Satisfaction
PubMed: 38883339
DOI: 10.3205/000331 -
BMC Health Services Research Jun 2024As part of a larger study, and in collaboration with rural primary health care teams, RaDAR (Rural Dementia Action Research) primary care memory clinics have evolved and...
BACKGROUND/OBJECTIVES
As part of a larger study, and in collaboration with rural primary health care teams, RaDAR (Rural Dementia Action Research) primary care memory clinics have evolved and continue to spread in communities across southeast Saskatchewan, Canada. This study focuses on the geographical areas of the four communities where RaDAR memory clinics were first developed and implemented and describes the services and supports available to older adults including memory clinic patients and families living in these areas. Our goal was to identify and describe existing programs and gaps, create inventories and maps, and explore the service experiences of family caregivers of people living with dementia in these rural areas.
METHODS
Using a qualitative descriptive design, an environmental scan of services was conducted from December 2020 to April 2021 using focus groups (n = 4) with health care providers/managers (n = 12), a secondary source (e.g., program brochures) review, and a systematic internet search targeting four RaDAR memory clinic communities and surrounding areas via community websites, online resources, and the 211 Saskatchewan service database. Data were analyzed using content analysis; findings informed semi-structured interviews with caregivers (n = 5) conducted from March to July 2022, which were analyzed thematically. Geographic areas explored in this study covered an area of approximately 5666 km.
RESULTS
From the scan, 43 services were identified, categorized into 7 service types, and mapped by location. Seventeen services were dementia-related. Services included social/leisure activities (n = 14), general support/referrals (n = 13), transportation (n = 7), information/education (n = 4), respite (n = 2), in-home care (n = 2), and safety (n = 1). Service levels included local (n = 24), provincial (n = 17), and national (n = 2), and were offered in-person, remotely (or both) with 20 services across 4 service types offered remotely. In general, most services had no fees, involved self-referral, and providers had a range of education/training. Key interview themes reflected the need for locally available, accessible services that offer (i) individualized, flexible, needs-based approaches, (ii) in-home care and continuity of care, and (iii) both formal and informal supports. Key gaps were identified, including (i) locally accessible, available services and resources in general, (ii) dementia-related training and education for service providers, and (iii) awareness of available services. Benefits of services, consequences of gaps, and recommendations to address gaps were reported. In general, service providers and program participants were an even mix of females and males, and program content was gender neutral.
CONCLUSIONS
Findings highlight a range of available services, and a number of varied service-user experiences and perspectives, in these rural areas. Key service gaps were identified, and caregivers made some specific recommendations to address these gaps. Findings underscore multiple opportunities to inform service delivery and program participation for rural and remote people living with dementia and their families.
Topics: Humans; Qualitative Research; Saskatchewan; Aged; Primary Health Care; Dementia; Rural Health Services; Male; Female; Caregivers; Health Services Accessibility; Rural Population; Focus Groups; Aged, 80 and over
PubMed: 38872136
DOI: 10.1186/s12913-024-11167-w -
Journal of Paediatrics and Child Health Jun 2024Disparities in preventative health care likely contribute to comorbidities associated with neurodevelopmental disability. These comorbidities are risk factors for poor...
Disparities in preventative health care likely contribute to comorbidities associated with neurodevelopmental disability. These comorbidities are risk factors for poor outcomes of COVID-19, making COVID-19 vaccination a priority for this population. In mid-2021, the Australian Technical Advisory Group (ATAGI) recommended the COVID-19 vaccination rollout include children and young people at risk of severe COVID-19 associated disease. This cohort included children/young people severely immunocompromised, with disability, and/or complex, multiple health conditions. Children and young people with neurodevelopmental disability can be challenging to vaccinate in conventional clinic environments and may experience exacerbation of behaviours posing barriers to vaccination. Remaining unvaccinated for COVID-19 increased risk of secondary complications and affected access to carers and respite facilities. This paper describes a novel, individualised approach to safe vaccination for this cohort. In consultation with stakeholders, a drive-through clinic vaccination model was developed and implemented for children/young people with neurodevelopmental disability. The model prioritised person-centred care and minimised triggering factors experienced in community clinics. Data were collected on successfully administered vaccine doses; administration safety and adverse events following immunisation. Parents/carers and staff provided reflective feedback. Twenty-four children and young people used the model with successful vaccination rate of 96% (n = 23). Most patients received multiple doses through the clinic (n = 16). Some patients were vaccinated after unsuccessful attempts elsewhere. Feedback from carers and staff was positive and no adverse events were reported. This model is generalisable to other health services and may be applied to other vaccinations for people of all ages with neurodevelopmental disabilities.
PubMed: 38860667
DOI: 10.1111/jpc.16591 -
The Gerontologist Jun 2024Self-direction is an approach that allows older adults and people with disabilities to determine the home and community-based services they receive, including the...
BACKGROUND AND OBJECTIVES
Self-direction is an approach that allows older adults and people with disabilities to determine the home and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes.
RESEARCH DESIGN AND METHODS
We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework.
RESULTS
Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social wellbeing. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers.
DISCUSSION AND IMPLICATIONS
Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.
PubMed: 38853407
DOI: 10.1093/geront/gnae068 -
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 -
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 -
JMIR Formative Research May 2024Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own...
BACKGROUND
Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom.
OBJECTIVE
This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom.
METHODS
Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party.
RESULTS
Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context.
CONCLUSIONS
AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff.
TRIAL REGISTRATION
ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.
PubMed: 38776139
DOI: 10.2196/52389