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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 2024
Delivering the Right Care, at the Right Time, in the Right Place, From the Right Pocket: How the Wrong Pocket Problem Stymies Medical Respite Care for the Homeless and What Can Be Done About It.
Topics: Humans; Ill-Housed Persons; Respite Care; United States; Health Services Accessibility
PubMed: 38728677
DOI: 10.1097/MLR.0000000000001998 -
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 -
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 -
Epilepsy & Behavior : E&B Jul 2024Dravet syndrome (DS) is a Developmental and Epileptic Encephalopathy (DEE) with onset typically in infancy. Seizures are pharmaco-resistant, and neurodevelopment is...
BACKGROUND
Dravet syndrome (DS) is a Developmental and Epileptic Encephalopathy (DEE) with onset typically in infancy. Seizures are pharmaco-resistant, and neurodevelopment is compromised in almost all children. There is limited data on the impact of the condition on the family, support needs and hopes and fears in Sweden.
METHODS
Interviews were undertaken with the caregivers of 36 of 48 (75%) living children with DS in Sweden focusing on the perceived impact on the family, current supports and hopes and fears for the future. Data from the interviews were analyzed by two raters using reflexive thematic analysis.
RESULTS
The analysis revealed seven main themes focusing on the perceived negative impact the disease has on caregivers and family functioning. These negative impacts concerned: caregiver sleep (e.g., frequent night waking), siblings (e.g., gets less attention/time), social life (e.g., limited vacations), family finances (e.g., limited career progression), parental health (both mental and physical) and need for constant supervision (e.g., child's need for constant supervision for fear of seizures). Another theme concerned the impact on family relationships. Whilst some caregivers perceived the impact to be negative (e.g., limited time for each other) others felt that having a child with DS lead to stronger relationships and more 'teamwork'. With respect to supports, the caregivers identified a number of areas where they felt the family could access appropriate supports. Themes regarding supports included: support from the wider family and friends, support from DS support groups (online or in-person), support from the child's hospital or disability service and respite care (e.g., child was looked after on weekends or had paid carers in the home). Regarding hopes and fears for the future, responses focused mainly on fears, including concerns about premature death of the child, transition to adult healthcare services and care arrangements for child when parents are dead. Hopes for the future included better treatment for epilepsy and associated neurodevelopmental problems and finding a cure for DS.
CONCLUSIONS
Caregivers of children with DS report that the disease can have a very comprehensive negative impact on caregiver and family functioning. Identifying and providing the supports to ameliorate these negative impacts is vital to optimize caregiver and family wellbeing and quality of life.
Topics: Humans; Caregivers; Epilepsies, Myoclonic; Male; Female; Fear; Child; Adult; Qualitative Research; Child, Preschool; Sweden; Family; Hope; Adolescent; Social Support; Middle Aged; Young Adult; Perception; Infant
PubMed: 38692022
DOI: 10.1016/j.yebeh.2024.109790 -
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 -
JMIR Nursing Apr 2024Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden,...
BACKGROUND
Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality.
OBJECTIVE
This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking.
METHODS
A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized.
RESULTS
A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services.
CONCLUSIONS
Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.
PubMed: 38625735
DOI: 10.2196/53078 -
HERD Apr 2024This study aimed to develop a preliminary Nurses' Physical Environmental Stress Scale (NPESS) that explores the relationships between the physical environment in the...
RESEARCH PURPOSE
This study aimed to develop a preliminary Nurses' Physical Environmental Stress Scale (NPESS) that explores the relationships between the physical environment in the intensive care unit (ICU) and work-related stress among ICU nurses.
BACKGROUND
Working within the healthcare field is stressful and comes with a high level of responsibility for nurses, especially ICU nurses. The ICU work environment is associated with risk factors such as excessive workload, increased expectations, and long working hours that can lead to burnout among nurses. There is some evidence that environmental design has the potential to prevent or mitigate work-related stress; however, an adequate assessment tool to identify physical environmental stressors or supports for moderating stress is lacking.
METHODS
To develop the preliminary environmental assessment tool, an exploratory sequential methodology was used. The approach consisted of three distinct phases, including (a) a qualitative content analysis of existing focus group data, (b) a qualitative content analysis of pertinent literature related to environmental assessment tools in a healthcare context, and (c) the development and refinement of the NPESS assessment tool. Tool refinement was based on interviews with ICU nurses.
RESULTS
The resulting NPESS tool was comprised of seven sections (sounds, lighting, smells, staff respite spaces, staff workspaces, patient rooms, and aesthetic qualities) containing a total of and 81 items that address factors that were identified as potential moderators of environmental stress in ICU settings.
CONCLUSIONS
The resulting NPESS assessment tool provides a feasible approach for evaluating ICU settings to identify possible improvements to reduce stress among nurses. Future research will be conducted to assess the validity and reliability of the final tool by distributing it to a larger sample of ICU nurses.
PubMed: 38622874
DOI: 10.1177/19375867241244468