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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 -
Surgical Neurology International 2024Homelessness is a growing concern in the US, with 3.5 million people experiencing it annually and 600,000 on any given night. Homeless individuals face increased... (Review)
Review
BACKGROUND
Homelessness is a growing concern in the US, with 3.5 million people experiencing it annually and 600,000 on any given night. Homeless individuals face increased vulnerability to 30-day hospital readmissions and higher mortality rates, straining the healthcare system and exacerbating existing disparities. This study aims to inform neurosurgeons on evidence-based strategies to reduce readmission and mortality rates among homeless patients by reviewing the literature on the impact of medical respite on 30-day readmission rates. The study aims to gauge the efficacy of medical respite in reducing hospital readmissions and improving health outcomes for homeless individuals.
METHODS
A comprehensive literature search was conducted across PubMed, Embase/Medline, and Cochrane databases, as well as consulting the National Institute for Medical Respite Care and the Department of Health Care Access and Information. Ten articles were chosen from an initial 296 to investigate the impact of respite programs on readmission rates among homeless patients.
RESULTS
Homeless patients experience high readmission rates due to various factors. Interventions such as respite programs and a comprehensive approach to healthcare can lower these rates. Collaboration between hospitals and medical respites has proven particularly effective.
CONCLUSION
Inadequate healthcare for homeless individuals leads to increased readmissions, longer hospital stays, and higher costs. Medical respites are a viable solution, but limited resources hamper their effectiveness. Therefore, it is crucial to facilitate cooperation between hospitals, respites, and other entities. Future research should focus on disparity in neurosurgical procedures and explore alternative services. An interdisciplinary approach is key to addressing healthcare inequalities.
PubMed: 38468673
DOI: 10.25259/SNI_549_2023 -
BMC Geriatrics Mar 2024Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and...
"It's a stressful, trying time for the caretaker": an interpretive description qualitative study of postoperative transitions in care for older adults with frailty from the perspectives of informal caregivers.
BACKGROUND
Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and caregiver support for this population, little is known about the experience of providing informal care to older adults with frailty during the postoperative transition in care. The purpose of this study was to explore what is important during a postoperative transition in care for older adults with frailty from the perspective of informal caregivers.
METHODS
This was a qualitative study using an interpretive description methodology. Seven informal caregivers to older adults [aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery] participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using reflexive thematic analysis.
RESULTS
Four themes were constructed: (1) being informed about what to expect after surgery; (2) accessible communication with care providers; (3) homecare resources are needed for the patient; and (4) a support network for the caregivers. Theme 4 included two sub-themes: (a) respite and emotional support and (b) occupational support.
CONCLUSIONS
Transitions in care present challenges for informal caregivers of older adults with frailty, who play an important role in successful transitions. Future postoperative transitional care programs should consider making targeted information, accessible communication, and support networks available for caregivers as part of facilitating successful transitions in care.
Topics: Humans; Aged; Caregivers; Frailty; Counseling; Qualitative Research; Family
PubMed: 38468202
DOI: 10.1186/s12877-024-04826-4 -
Alzheimer's & Dementia : the Journal of... Mar 2024
Topics: Humans; Caregivers; Respite Care; Dementia; Surveys and Questionnaires
PubMed: 38453680
DOI: 10.1002/alz.13787 -
BMJ Open Mar 2024Mental health inpatient facilities are increasingly focusing on creating therapeutic, person-centred care environments. However, research shows that this focus may have...
OBJECTIVES
Mental health inpatient facilities are increasingly focusing on creating therapeutic, person-centred care environments. However, research shows that this focus may have unintended consequences for healthcare staff. Designs that do not pay attention to staff needs may risk contributing to stress, burnout, job dissatisfaction and mental exhaustion in the work environment. This systematic review aims to identify and synthesise current research on the design factors of adult mental health inpatient facilities that impact healthcare staff.
DESIGN
A mixed method systematic review was conducted to search for empirical, peer-reviewed studies using the databases CINAHL, Embase, PsycINFO, PubMed and Web of Science from their inception up to 5 September 2023. The Joanna Briggs Institute's critical appraisal checklists were used to assess the methodological quality of the eligible studies. Data were extracted and grouped based on the facility design factors.
RESULTS
In our review, we included 29 peer-reviewed empirical studies that identified crucial design factors impacting healthcare staff in adult mental health inpatient facilities. Key factors included layouts providing optimal visibility, designated work and respite areas, and centrally located nursing stations. Notably, mixed perceptions regarding the benefits and challenges of open and glass-enclosed nursing stations suggest areas requiring further research. Facilities in geographically remote locations also emerged as a factor influencing staff dynamics. Additionally, although only supported by a limited number of studies, the significance of artwork, sensory rooms for respite, appropriate furniture and equipment, and access to alarms was acknowledged as contributory factors.
CONCLUSION
Through the synthesis of existing research, this review identified that the design of mental health facilities significantly impacts staff well-being, satisfaction, performance and perception of safety. Concluding that, in order to create a well-designed therapeutic environment, it is essential to account for both service users and staff user needs.
PROSPERO REGISTRATION NUMBER
CRD42022368155.
Topics: Adult; Humans; Delivery of Health Care; Hospitals, Psychiatric; Inpatients; Mental Health; Health Personnel; Facility Design and Construction
PubMed: 38448069
DOI: 10.1136/bmjopen-2023-074368 -
Palliative Care and Social Practice 2024Globally, the demand for hospice care continues to grow resulting in substantial resource burden. Whilst some countries are able to rely on fixed government...
"Before I came to the hospice, I had nobody". A qualitative exploration of what patients, family-caregivers, clinicians and volunteers valued most about home, day therapy or inpatient hospice services.
BACKGROUND
Globally, the demand for hospice care continues to grow resulting in substantial resource burden. Whilst some countries are able to rely on fixed government contributions, statutory funding for palliative care in the United Kingdom is unequally distributed. These unstable funding streams and increased demand means that hospices need to evidence their value.
OBJECTIVE
This study explored the experiences of patients and family-caregivers to determine what they valued most from accessing hospice services in Wales.
METHODS
In this large multi-site qualitative study, 94 semi-structured interviews and 2 focus groups were conducted with hospice patients ( = 45), family-caregivers ( = 18), hospice staff ( = 31) and volunteers ( = 10). The audio recordings were transcribed verbatim and analysed using Framework analysis.
RESULTS
Seven themes described patient and family-caregiver experiences and what they valued most: relationships with staff and volunteers, greater support networks which reduced social isolation and loneliness, provision of information and advice which improved patient autonomy, symptom management and subsequent reduction in psychological distress, improvements in patient functionality, mobility and overall physical health and respite relief which promoted improved relationships.
CONCLUSION
This is the largest study to explore what patients and family-caregivers value from hospice care. Findings indicate that hospice care provides a truly needs-led and strengths-based service to those who are nearing and at the end-of-life, which is highly valued by patients and family members.
PubMed: 38426037
DOI: 10.1177/26323524241231820 -
Gesundheitswesen (Bundesverband Der... Feb 2024In Germany, people in need of care are mainly cared for by their relatives who make use of various outpatient relief and support services. The aim of this study was...
[Desire and Reality: Discrepancy Between the Actual Usage and the Need to Use Ambulant Support Services - Cross Sectional Study of Elderly People Living at Home in Chronic Need of Care].
AIM
In Germany, people in need of care are mainly cared for by their relatives who make use of various outpatient relief and support services. The aim of this study was to determine the frequency of actual use as well as the desired use of outpatient relief and support services. Dementia and non-dementia as causes behind need for care are distinguished.
METHODS
A representative sample of informal caregivers of statutorily insured care recipients assessed by the MD Bayern during application for a care level classification (n=958) was analyzed. The use of the following outpatient relief and support services was investigated: outpatient care service; domestic help; day care centre; meals on wheels; driving service; care service; 24-hour care; and care group. Characteristics of the care receiver, the informal caregiver and the care situation were recorded. Difference analyses were carried out using Chi² tests and t-tests.
RESULTS
The use of outpatient support services was low despite the high care burden on informal caregivers ranging from 1,7% for the care group to 38,4% for the outpatient care service. More than 40% of respondents did not use any of the eight services. However, from this non-user group, 72% had a desire to use at least one of the eight services in the future. Domestic help and outpatient care services were the most frequently requested services by non-users. Actual and desired use was more common for dementia than for other causes of need for care, especially for day care, care group and care service.
CONCLUSION
The desire for utilization is significantly higher than the reality of utilization. In general, the use of outpatient relief and support services is low. The causes of this discrepancy need to be explored. Therefore, effective strategies need to be developed to advise informal caregivers which ensure suitable respite services will be used to strengthen the home care situation.
Topics: Humans; Aged; Cross-Sectional Studies; Germany; Dementia; Home Care Services; Caregivers
PubMed: 38395034
DOI: 10.1055/a-2003-9184