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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 -
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 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 -
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 -
International Journal of Qualitative... Dec 2024Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care...
INTRODUCTION
Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care can offer support, its accessibility is hindered by organizational challenges and informal caregivers' delays in using it. The experiences of informal caregivers are well-studied, but the professionals' experiences of respite care quality and critical incident management are underexplored.
AIM
To explore professionals' experiences of critical incidents in respite care, consequences for the persons being cared for, and strategies to manage critical incidents.
MATERIALS AND METHODS
A qualitative, critical incident technique was used, and three group interviews with a total of 16 professionals were conducted.
RESULTS
Barriers to quality respite care included communication gaps during care transitions, environmental shortcomings in respite care facilities, lack of support for informal caregivers, and inadequacies in respite care decisions. Strategies to manage critical incidents included individualized care, continuity and communication in care transitions, a conducive environment, support for informal caregivers, and care professionals' positive approach.
CONCLUSIONS
The study emphasizes the need for focused efforts on communication, continuity, and a supportive environment. Addressing identified challenges and applying suggested strategies will be key to maximizing the potential of respite care as a vital support for care recipients and their informal caregivers.
Topics: Humans; Respite Care; Sweden; Caregivers; Qualitative Research; Male; Female; Health Personnel; Middle Aged; Adult; Communication; Attitude of Health Personnel; Quality of Health Care; Aged; Social Support; Continuity of Patient Care
PubMed: 38735060
DOI: 10.1080/17482631.2024.2352888 -
Medical Care Jun 2024Housing is a critical social determinant of health that can be addressed through hospital-supported community benefit programming.
BACKGROUND
Housing is a critical social determinant of health that can be addressed through hospital-supported community benefit programming.
OBJECTIVES
To explore the prevalence of hospital-based programs that address housing-related needs, categorize the specific actions taken to address housing, and determine organizational and community-level factors associated with investing in housing.
RESEARCH DESIGN
This retrospective, cross-sectional study examined a nationally representative dataset of administrative documents from nonprofit hospitals that addressed social determinants of health in their federally mandated community benefit implementation plans. We conducted descriptive statistics and bivariate analyses to examine hospital and community characteristics associated with whether a hospital invested in housing programs. Using an inductive approach, we categorized housing investments into distinct categories.
MEASURES
The main outcome measure was a dichotomous variable representing whether a hospital invested in one or more housing programs in their community.
RESULTS
Twenty percent of hospitals invested in one or more housing programs. Hospitals that addressed housing in their implementation strategies were larger on average, less likely to be in rural communities, and more likely to be serving populations with greater housing needs. Housing programs fell into 1 of 7 categories: community partner collaboration (34%), social determinants of health screening (9%), medical respite centers (4%), community social determinants of health liaison (11%), addressing specific needs of homeless populations (16%), financial assistance (21%), and targeting high-risk populations (5%).
CONCLUSIONS
Currently, a small subset of hospitals nationally are addressing housing. Hospitals may need additional policy support, external partnerships, and technical assistance to address housing in their communities.
Topics: Humans; Cross-Sectional Studies; Retrospective Studies; Housing; United States; Social Determinants of Health; Organizations, Nonprofit
PubMed: 38728676
DOI: 10.1097/MLR.0000000000001984 -
BMJ Mental Health Apr 2024There are significant clinical, policy and societal concerns about the impact on young people (YP), from admission to psychiatric wards far from home. However, research...
BACKGROUND
There are significant clinical, policy and societal concerns about the impact on young people (YP), from admission to psychiatric wards far from home. However, research evidence is scarce.
AIMS
To investigate the impact of at-distance admissions to general adolescent units, from the perspectives of YP, parents/carers and healthcare professionals (HCPs) including service commissioners, to inform clinical practice, service development and policy.
METHOD
Semistructured interviews with purposive samples of YP aged 13-17 years (n=28) and parents/carers (n=19) across five large regions in England, and a national sample of HCPs (n=51), were analysed using a framework approach.
RESULTS
There was considerable agreement between YP, parents/carers and HCPs on the challenges of at-distance admissions. YP and parents/carers had limited or no involvement in decision-making processes around admission and highlighted a lack of available information about individual units. Being far from home posed challenges with maintaining home contact and practical/financial challenges for families visiting. HCPs struggled with ensuring continuity of care, particularly around maintaining access to local clinical teams and educational support. However, some YP perceived separation from their local environment as beneficial because it removed them from unhelpful environments. At-distance admissions provided respite for some families struggling to support their child.
CONCLUSIONS
At-distance admissions lead to additional distress, uncertainty, compromised continuity of care and educational, financial and other practical difficulties, some of which could be better mitigated. For a minority, there are some benefits from such admissions.
CLINICAL IMPLICATIONS
Standardised online information, accessible prior to admission, is needed for all Child and Adolescent Mental Health Services units. Additional practical and financial burden placed on families needs greater recognition and consideration of potential sources of support. Policy changes should incorporate findings that at-distance or adult ward admissions may be preferable in certain circumstances.
Topics: Humans; Adolescent; Female; Male; Qualitative Research; Parents; Health Personnel; England; Caregivers; Mental Disorders; Hospitalization; Adult; Middle Aged; Inpatients; Patient Admission
PubMed: 38670574
DOI: 10.1136/bmjment-2024-300991 -
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 -
PLOS Global Public Health 2024Caring for the mentally ill involves numerous challenges, including financial difficulties, stigma, and psychosocial issues, among others. Unpaid family caregivers must...
Caring for the mentally ill involves numerous challenges, including financial difficulties, stigma, and psychosocial issues, among others. Unpaid family caregivers must endure these challenges as they continue their care for their relatives with mental illness. Despite these burdens and their concomitant effects on both the patients and their caregivers, there is no evidence of this burden in the Bolgatanga municipality. This study explored the burden on family caregivers providing care for mentally ill relatives in the Bolgatanga Municipality of the Upper East Region of Ghana. The study employed a phenomenological research design. Fifteen family caregivers were purposively sampled from two secondary-level health facilities. In-depth interviews were conducted, audio-recorded, and transcribed verbatim. NVivo 12 pro software was used for data analysis. Thematic analysis was conducted following Braun and Clarke's approach. The study identified three themes including social, physical, and psychological burdens. Under social burden, financial challenges and stigma were identified, weight loss was identified as a physical burden, and poor concentration as a psychological burden. These themes represent the challenges encountered by the family caregivers as they provided care for their mentally ill relatives. There is a need to provide support for family caregivers including respite, formation of support groups, and financial support to alleviate family caregivers of the burdens they endure. Additionally, it is imperative to integrate mental health services into the national health insurance scheme to alleviate the financial burden on family caregivers.
PubMed: 38626022
DOI: 10.1371/journal.pgph.0003075