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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 -
International Journal of Law and... 2024This study examined the impact of statutory revisions in 2016 which aimed to enhance procedural justice within the process of civil commitment for persons diagnosed with...
INTRODUCTION
This study examined the impact of statutory revisions in 2016 which aimed to enhance procedural justice within the process of civil commitment for persons diagnosed with mental illnesses (PDMI) in South Korea. These changes included requiring that PDMI pose a threat of danger to self or others and the need for treatment simultaneously as criteria for petitioning civil commitment. Additionally, the revision established a public entity to oversee the legitimacy of petitions to involuntarily commit PDMI to inpatient treatment. Despite these statutory changes, families providing care for PDMI still appear to depend on civil commitment as a way to seek respite from care burden, not necessarily to respond to psychiatric emergencies involving dangerousness. This practice seems to be aided by processes within the public entity providing oversight. Due to such barriers we hypothesized that, even after the statutory revision in 2016, PDMI who had been civilly committed following petitions from families will not exhibit elevated dangerousness compared to PDMI who had never been hospitalized during the same period.
METHODS
Trained interviewers recruited 331 participants self-identified as PDMI from psychiatric rehabilitation agencies in the community and aided them in completing a survey including measures of self-reported hospitalization history, suicidality, and aggression toward others. Participants were classified into four groups: Family-petition committed (FPC) group (n = 30, 9.1%), voluntarily hospitalized (VH) group (n = 34, 10.3%), public-petition committed (PPC) group (n = 31, 9.4%), and never hospitalized (NH) group (n = 236, 71.3%). We conducted logistic regression analyses to compare self-reported dangerousness between groups with the NH group as the reference group.
RESULTS
In the past 12 months, 43.5% of PDMI participants had self-reported behaviors that may have met the dangerousness criteria for civil commitment. Controlling for confounding factors, the PPC group was 2.96 times and 3.02 times as likely to report suicidal ideation and physical aggression, respectively, compared to the NH group. However, as hypothesized, the FPC group did not differ from the NH group on any indicator of self-reported dangerousness.
CONCLUSION
The findings were based on cross-sectional correlational data and should not be viewed as conclusive evidence that the 2016 statutory revision is ineffective in preventing family-petitioned civil commitment in cases where dangerousness is not apparent. Nevertheless, these findings encourage further empirical studies that illuminate the etiology of procedural justice in civil commitments petitioned by family members and that assess factors and contexts that promote the consideration of least coercive treatments, rather than resorting to involuntary hospitalization when psychiatric emergencies arise.
Topics: Humans; Republic of Korea; Male; Female; Adult; Commitment of Mentally Ill; Middle Aged; Mental Disorders; Family; Young Adult; Dangerous Behavior; Suicidal Ideation
PubMed: 38603975
DOI: 10.1016/j.ijlp.2024.101982 -
Journal of Gerontological Social Work 2024This project examined the impacts of the COVID-19 pandemic on grandparent caregivers, grandchildren, family dynamics, and resources to mitigate and navigate crises....
This project examined the impacts of the COVID-19 pandemic on grandparent caregivers, grandchildren, family dynamics, and resources to mitigate and navigate crises. Phone interviews were conducted with 24 grandparent caregivers using a semi-structured interview guide. Caregivers explained that the pandemic had impacted them and their grandchildren by increasing emotional distress, social isolation, financial difficulties, and challenges with education. Helpful resources consisted of financial support, respite care, and support for grandchildren. Thus, there is a need to provide grandparent caregivers with the same resources that foster care providers receive - particularly when faced with challenges such as the COVID-19 pandemic.
Topics: Humans; COVID-19; Caregivers; Male; Female; Aged; Middle Aged; Grandparents; SARS-CoV-2; Pandemics; Aged, 80 and over; Social Isolation; Social Support; Interviews as Topic; Respite Care; Adult
PubMed: 38602360
DOI: 10.1080/01634372.2024.2339988 -
Journal of Palliative Medicine Apr 2024Due to their remote location, rural-dwelling family caregivers (FCGs) experience geographic and psychosocial challenges when providing home-based palliative and... (Review)
Review
Due to their remote location, rural-dwelling family caregivers (FCGs) experience geographic and psychosocial challenges when providing home-based palliative and end-of-life (PEOL) care for their care recipient. Limited research has evaluated the social and environmental factors that may compound FCG burden and contribute to adverse emotional health outcomes among rural-dwelling PEOL FCGs. To characterize the social determinants of health (SDOH) that affect the provision of PEOL care among rural-dwelling FCGs, along with symptoms of anxiety and depression. A scoping review was conducted using Arksey and O'Malley's Framework. Searches were conducted in PubMed, CINAHL, PsycINFO, and Cochrane, and 511 articles published between 2010 and 2023 were screened. Keywords included "rural," "PEOL care," and "FCG." Inclusion criteria included FCGs, ages ≥18 years; findings reported on SDOH, anxiety, and/or depressive symptoms; within a rural context; and U.S. based. In this review, 18 studies met eligibility and were included. Apart from six studies that specifically investigated Black and Latinx FCGs, most FCGs were middle-aged White female spouses. SDOH impacting PEOL care provision included: limited access to PEOL services due to remote distance and travel needs for services; low health literacy in medical terminology and patient symptom management; limited English-language proficiency; perceived clinician racial and ethnic discrimination; financial vulnerabilities affecting health care coverage; and underdeveloped infrastructure. These barriers negatively impacted decision making, communication with clinicians, and patient symptom management. FCGs reported emotional distress related to patients' symptom management and limited opportunities for respite. There was a limited investigation of emotional well-being and minimal interventions aimed toward improving rural-dwelling FCG emotional health. The presence of community support promoted hospice use and facilitated the provision of care. FCGs are vulnerable to adverse emotional health when providing home-based PEOL care. Research is needed to develop supportive interventions (e.g., digital health) for rural-dwelling FCGs.
PubMed: 38598274
DOI: 10.1089/jpm.2023.0566 -
Journal of Gerontological Social Work Apr 2024Perceived threat of Alzheimer's disease and related dementias (ADRD) has been found a widespread phenomenon in developed countries, but has not yet been fully explored...
Perceived threat of Alzheimer's disease and related dementias (ADRD) has been found a widespread phenomenon in developed countries, but has not yet been fully explored in developing countries. Analyzing data from 300 family caregivers of older adults with cognitive impairment in China, this study found caregiver burden was positively associated with the perceived threat of ADRD, and this association was buffered by higher family income and longer caregiving time. To alleviate undue ADRD concerns, it suggests expanding respite care and community elder care beds, and initiating education programs on reducing unnecessary worries about developing ADRD.
PubMed: 38590188
DOI: 10.1080/01634372.2024.2339984 -
Academic Emergency Medicine : Official... Apr 2024Persons living with dementia (PLWD) experience frequent and costly emergency department (ED) visits, with poor outcomes attributed to suboptimal care and postdischarge...
BACKGROUND
Persons living with dementia (PLWD) experience frequent and costly emergency department (ED) visits, with poor outcomes attributed to suboptimal care and postdischarge care transitions. Yet, patient-centered data on ED care experiences and postdischarge needs are lacking. The objective of this study was to examine the facilitators and barriers to successful ED care and care transitions after discharge, according to PLWD and their caregivers.
METHODS
We conducted a qualitative study involving ED patients ages 65 and older with confirmed or suspected dementia and their caregivers. The semistructured interview protocol followed the National Quality Forum's ED Transitions of Care Framework and addressed ED care, care transitions, and outpatient follow-up care. Interviews were conducted during an ED visit at an urban, academic ED. Traditional thematic analysis was used to identify themes.
RESULTS
We interviewed 11 patients and 19 caregivers. Caregivers were more forthcoming than patients about facilitators and challenges experienced. Characteristics of the patients' condition (e.g., resistance to care, forgetfulness), the availability of family resources (e.g., caregiver availability, primary care access), and system-level factors (e.g., availability of timely appointments, hospital policies tailored to persons with dementia) served as facilitators and barriers to successful care. Some resources that would ameliorate care transition barriers could be easily provided in the ED, for example, offering clear discharge instructions and care coordination services and improving patient communication regarding disposition timeline. Other interventions would require investment from other parts of the health care system (e.g., respite for caregivers, broader insurance coverage).
CONCLUSIONS
ED care and care transitions for PLWD are suboptimal, and patient-level factors may exacerbate existing system-level deficiencies. Insight from patients and their caregivers may inform the development of ED interventions to design specialized care for this patient population. This qualitative study also demonstrated the feasibility of conducting ED-based studies on PLWD during their ED visit.
PubMed: 38590030
DOI: 10.1111/acem.14898 -
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