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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 -
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 -
Healthcare (Basel, Switzerland) Mar 2024In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this...
BACKGROUND
In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from respite care services in the Lumina Association, Bacău hospice unit and the benefits it can bring in improving their psycho-emotional state.
METHODS
The study consisted of quantitative research involving 34 parents/caregivers who responded to a questionnaire with 26 questions, and qualitative research which involved the organization of a focus group with 12 parents who benefited from respite services.
RESULTS
The use of respite services was associated with a significant reduction of psycho-emotional distress on the part of primary caregivers; 91% of respondents said that this type of service reduces the level of psycho-emotional stress.
CONCLUSIONS
All participants in the study confirmed that the most important benefit of respite is the time gained to care for family and health. The development of respite services could reduce the risk of emotional exhaustion and mental health problems.
PubMed: 38610170
DOI: 10.3390/healthcare12070748 -
Heliyon Mar 2024Type one diabetes (T1D) in children places substantial responsibility on parents as caregivers. This study investigated caregiver burden in parents of children with T1D...
OBJECTIVES
Type one diabetes (T1D) in children places substantial responsibility on parents as caregivers. This study investigated caregiver burden in parents of children with T1D by exploring the financial, physical, social, spiritual, and emotional or psychological problems they experienced.
METHODS
We conducted a qualitative scoping review of the databases PsycINFO, PROSPERO, OVID Medline, OVID EMBASE, Cochrane Library (CDSR and Central), EBSCO CINAHL, ProQuest Dissertations and Theses Global, and SCOPUS. Of 119 full text articles assessed for eligibility, 18 peer-reviewed qualitative studies were included. Studies were considered relevant if they focused on diabetes management and parental burden or the experience of caregiving for a child with T1D.
RESULTS
Using thematic analysis, six interrelated themes were identified: (a) experiencing chronic sorrow, (b) assuming responsibility for glucose highs and lows, (c) managing T1D and nighttime sleep disturbances, (d) making career sacrifices and choices to optimize T1D care, (e) navigating social experiences postdiagnosis, and (f) discovering new sources of support through online platforms.
CONCLUSIONS
This synthesis highlights an all-encompassing experience involved in caretaking for a child with T1D. Caregiving duties lead to a constant sense of vigilance, especially due to fear of hypoglycemic incidents. Parents commonly experience challenges with balancing work demands with T1D management, which lead to career and financial sacrifices. Their burden of care is exacerbated by a lack of reliable respite care but helped somewhat by online peer support. Future research is needed on the care burden differences between mothers and fathers and how sociodemographic factors affect how caregiver burden is experienced.
PubMed: 38524615
DOI: 10.1016/j.heliyon.2024.e27539 -
The International Journal on Drug Policy Apr 2024The Tenderloin Center (TLC), a multi-service center where people could receive or be connected to basic needs, behavioral health care, housing, and medical services, was...
Radical hospitality: Innovative programming to build community and meet the needs of people who use drugs at a government-sanctioned overdose prevention site in San Francisco, California.
BACKGROUND
The Tenderloin Center (TLC), a multi-service center where people could receive or be connected to basic needs, behavioral health care, housing, and medical services, was open in San Francisco for 46 weeks in 2022. Within a week of operation, services expanded to include an overdose prevention site (OPS), also known as safe consumption site. OPSs have operated internationally for over three decades, but government-sanctioned OPSs have only recently been implemented in the United States. We used ethnographic methods to understand the ways in which a sanctioned OPS, situated in a multi-service center, impacts the lives of people who use drugs (PWUD).
METHODS
We conducted participant observation and in-depth interviews June-December 2022. Extensive field notes and 39 in-depth interviews with 24 TLC guests and 15 TLC staff were analyzed using an inductive analysis approach. Interviewees were asked detailed questions about their experiences using and working at the TLC.
RESULTS
TLC guests and staff described an atmosphere where radical hospitality-welcoming guests with extraordinary warmth, generosity, and unconditional acceptance-was central to the culture. We found that the co-location of an OPS within a multi-service agency (1) allowed for the culture of radical hospitality to flourish, (2) yielded a convenient one-stop shop model, (3) created a space for community building, and (4) offered safety and respite to guests.
CONCLUSIONS
The co-location of an OPS within a multi-service drop-in center is an important example of how such an organization can build positive sociality among PWUD while protecting autonomy and reducing overdose mortality. Overdose response and reversal is an act of relational accountability in which friends, peers, and even strangers intervene to protect and revive one another. This powerful intervention was operationalized as an anti-oppressive, horizontal activity through radical hospitality with a built environment that allowed PWUD to be both social and safe.
Topics: Humans; San Francisco; Drug Overdose; Drug Users; Female; Male; Substance-Related Disorders; Harm Reduction; Interviews as Topic
PubMed: 38492432
DOI: 10.1016/j.drugpo.2024.104366