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Journal of Pediatric Nursing 2020The benefits of respite care in reducing the burden of caregivers of children with disabilities are well known; however, few studies have effectively quantified such...
PURPOSE
The benefits of respite care in reducing the burden of caregivers of children with disabilities are well known; however, few studies have effectively quantified such benefits. The aim of the present study was to develop and validate a measure for evaluating the benefit of respite care provided to family caregivers of children with disabilities.
DESIGN AND METHODS
This was a cross-sectional study. We distributed a survey questionnaire to 465 family caregivers between March and April 2017. Participants were asked to respond to items regarding benefits of respite care for themselves and their children.
RESULTS
Data in relation to four domains (Child Development, Sense of Peace and Life Fulfillment among Caregivers, Mental Health Support for the Caregiver, and Expansion of Perspectives and Future Vision) were extracted to assess the benefits of using respite care. The full-scale Cronbach's α coefficient was 0.89 and ranged between 0.73 and 0.88 for each individual domain.
CONCLUSIONS
The newly developed measure for assessing the benefits of respite care for family caregivers of children with disabilities was highly reliable and valid.
PRACTICE IMPLICATIONS
This objective tool would allow healthcare practitioners to review the quality of respite care they provide and subsequently help them identify ways to improve.
Topics: Caregivers; Child; Cross-Sectional Studies; Disabled Children; Humans; Respite Care; Surveys and Questionnaires
PubMed: 32035694
DOI: 10.1016/j.pedn.2020.01.016 -
Journal of the American Medical... Mar 2023To examine the (1) cohort of individuals living at home with Home Care Packages (HCPs) in 2016, (2) their access to other aged care services after HCP commencement, and...
OBJECTIVES
To examine the (1) cohort of individuals living at home with Home Care Packages (HCPs) in 2016, (2) their access to other aged care services after HCP commencement, and (3) their hospital and ambulance service utilization.
DESIGN
A cross-sectional study was conducted using integrated aged care and health care data contained within the National Historical Cohort of the Registry of Senior Australians.
SETTING AND PARTICIPANTS
This study included people who accessed HCP between January 1, 2016 and December 31, 2016.
METHODS
The access to permanent residential aged care, transition care, respite care, hospital and ambulance services among Australian HCP recipients ≥65 years old in 2016 was evaluated. Descriptive statistics were employed.
RESULTS
In 2016, 84,681 individuals received HCPs, of which 68.4% (n = 57,942) accessed HCP levels 1‒2, 26.0% (n = 22,057) accessed HCP levels 3‒4, and 5.5% (n = 4682) accessed both care levels within the year. Of the individuals receiving HCP, 34.0% (n = 27,787) started services that year and 16.7% (n = 14,117) moved to permanent residential aged care, 18.4% (n = 15,592) used respite care and 5.8% (n = 4937) used transition care that year. Emergency department (ED) presentations [43.6%, 95% confidence interval (CI) 43.3‒44.0] were the most common hospital encounters, followed by inpatient hospitalizations for any reason (43.3%, 95% CI 42.9‒43.7), and unplanned hospitalizations (38%, 95% CI 37.6‒38.3). Forty-four percent (44.5%, 95% CI 43.9‒45.0) of individuals utilized ambulance services. ED presentations, hospitalization for any reason, and unplanned hospitalizations were more common in individuals receiving HCP levels 3‒4 compared with those accessing HCP levels 1‒2.
CONCLUSIONS AND IMPLICATIONS
HCP recipients in Australia have frequent hospitalizations, including ED presentations. In addition, almost 1 in 5 access respite care and 16.7% transition to permanent residential care each year. As the population accessing HCP is increasing, adequate support for these individuals to live well at home and avoid health events that lead to hospitalizations are necessary.
Topics: Humans; Aged; Australia; Cross-Sectional Studies; Home Care Services; Delivery of Health Care; Hospitalization; Emergency Service, Hospital
PubMed: 36581309
DOI: 10.1016/j.jamda.2022.11.019 -
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 -
BMJ Open Jun 2023Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of...
Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada.
OBJECTIVES
Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.
DESIGN
Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.Manitoba, a western Canadian province.
PARTICIPANTS
Thirty-two families (including 38 parents and 13 siblings) of CYSHCN.
RESULTS
We identified six themes surrounding challenges experienced by families' in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.
CONCLUSIONS
Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.
Topics: Adolescent; Child; Humans; Manitoba; Canada; Respite Care; Burnout, Psychological; Cluster Analysis
PubMed: 37385743
DOI: 10.1136/bmjopen-2023-073391 -
Pediatrics Oct 2022This study determined the prevalence of PPC programs in the United States and compared the environment of children's hospitals with and without PPC programs.
BACKGROUNG AND OBJECTIVES
This study determined the prevalence of PPC programs in the United States and compared the environment of children's hospitals with and without PPC programs.
METHODS
Analyses of the multicenter Children's Hospital Association Annual Benchmark Report 2020 survey for prevalence of PPC programs and association with operational, missional, educational, and financial domains.
RESULTS
Two hundred thirty-one hospitals received Annual Benchmark Report survey requests with 148 submitted (64% response rate) inclusive of 50 states. One hundred nineteen (80%) reported having a PPC program and 29 (20%) reported not having a PPC program. Free-standing children's hospitals (n = 42 of 148, 28%) were more likely to report the presence of PPC (P = .004). For settings with PPC programs, the median number of staffed beds was 185 (25th quartile 119, 75th quartile 303) compared with 49 median number of staffed beds for those without PPC (25th quartile 30, 75th quartile 81). Facilities with higher ratio of trauma, intensive care, or acuity level were more likely to offer PPC. Although palliative care was associated with hospice (P <.001) and respite (P = .0098), over half of facilities reported not having access to hospice for children (n = 82 of 148, 55%) and 79% reported not having access to respite care (n = 117 of 148).
CONCLUSIONS
PPC, hospice, and respite services remain unrealized for many children and families in the United States. Programmatic focus and advocacy efforts must emphasize creation and sustainability of quality PPC programs in smaller, lower resourced hospitals.
Topics: Child; Hospice Care; Hospices; Hospitals, Pediatric; Humans; Palliative Care; Surveys and Questionnaires; United States
PubMed: 36093621
DOI: 10.1542/peds.2022-057872 -
Parkinson's Disease 2021In the late stage of Parkinson's disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and...
In the late stage of Parkinson's disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients' and their informal caregivers' satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients ( = 11) and informal caregivers ( = 9) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: "We are trying to get by both with and without the formal care" and five subcategories: "Availability of health care is important for managing symptoms and everyday life"; "Dependence on others and scheduled days form everyday life"; "There is a wish to get adequate help when it is needed"; "Mixed feelings on future housing and respite care"; and "Family responsibility and loyalty for a functioning everyday life". Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.
PubMed: 33815742
DOI: 10.1155/2021/9475026 -
Internal Medicine Journal Jan 2020Residential respite is an important support for many community-dwelling older Australians and their caregivers. Respite clients are often very frail with high or... (Comparative Study)
Comparative Study
BACKGROUND
Residential respite is an important support for many community-dwelling older Australians and their caregivers. Respite clients are often very frail with high or specific care needs. Little is known about the comparative outcomes of hospital admission between permanent residential aged care facility (RACF) residents and residential respite residents.
AIM
To determine the number of residential respite clients admitted to an acute tertiary hospital, and compare characteristics and in-hospital outcomes with those of permanent residential care residents.
METHODS
Retrospective study of residential respite patients admitted to an Australian tertiary hospital between November 2014 and September 2017. Comparison groups: all RACF patients admitted during same period (general RACF group), and control group matched (2:1) for aged, gender and diagnosis.
MAIN OUTCOME MEASURES
in-hospital mortality, hospital length of stay (LOS), in-hospital complications (including fall, delirium, pressure injury, Medical Emergency Team (MET) call). Comparisons adjusted for age, gender, presenting symptom and matching variable.
RESULTS
A total of 166 admissions from residential respite and 332 matched RACF controls identified from 4575 admissions for permanent RACF residents. Mortality was significantly higher in respite group versus general RACF group (15.1 vs 8.2%, P < 0.001) but not matched control group (15.1 vs 16.3%, P = 0.795). LOS was significantly higher in respite patients than either control group. Respite patients had significantly higher prevalence of in-hospital fall (10.8 vs 1.5%, P < 0.0001) and delirium (35.5 vs 17.7%, P < 0.001) than matched RACF controls. No significant differences were seen in in MET-call and pressure injury rates.
CONCLUSION
Although residential respite recipients represent a minority of total residential aged care admissions, they are at high risk of poor outcomes. Prospective identification and timely intervention may improve quality of care for this vulnerable cohort.
Topics: Accidental Falls; Aged, 80 and over; Australia; Cause of Death; Delirium; Emergency Service, Hospital; Female; Homes for the Aged; Hospital Mortality; Humans; Length of Stay; Male; Morbidity; Nursing Homes; Regression Analysis; Respite Care; Retrospective Studies
PubMed: 31081229
DOI: 10.1111/imj.14354 -
Journal of Autism and Developmental... Nov 2023Parenting an autistic child can affect a family's well-being. Finding resources is critical. This pilot study looked at respite's impact on parental stress, anxiety, and...
OBJECTIVE
Parenting an autistic child can affect a family's well-being. Finding resources is critical. This pilot study looked at respite's impact on parental stress, anxiety, and depression in military families and demographic factors associated with presence of respite care.
METHOD
Participants completed three surveys on anonymous basis, including two standardized surveys measuring parental stress and anxiety/depression. Data analysis used Chi-square test and regression analysis.
RESULTS
Parents receiving respite reported less stress and anxiety/depression. Respite utilization was associated with absence of comorbid conditions in child and other variables. Predictor variables for parental stress and anxiety/depression included presence of comorbid conditions in child.
CONCLUSION
Respite care may be linked to lower parental stress, anxiety, and depression, but more study is needed.
Topics: Child; Humans; Autistic Disorder; Depression; Military Personnel; Respite Care; Pilot Projects; Autism Spectrum Disorder; Parents; Anxiety
PubMed: 36030352
DOI: 10.1007/s10803-022-05704-x -
Neurology Feb 2023In medical school, students learn to view the world through a biomedical lens. While necessary clinically, this lens can be impersonal. For example, the mental status...
In medical school, students learn to view the world through a biomedical lens. While necessary clinically, this lens can be impersonal. For example, the mental status examination (MSE) evaluates cognitive function through a brief assessment of alertness and orientation to person, place, time, and situation. While clinically useful, the MSE often neglects to capture a person's individuality. Visiting my grandmother who has Alzheimer disease highlighted this tension. I juxtaposed the impersonality of our MSE orientation scale with my grandmother's lived experiences. My grandmother is identified using a pseudonym. Informed consent was obtained from her health care power of attorney and family.Birds twitter and chirp as they flit into the shade,the covered patio a respite from the morning's heat.I sit with Joanna and show her a painting:an apple, red peppers, a garlic clove, and a grapefruitrest on a white napkin.Produce so vibrant the napkin is stainedwith their vivid reflections.The wrinkles around her eyes deepen as she squints at the picture.She always liked to see my artwork.Bright colors illuminate the lines of confusion on her face.Where did you get all this food?We're rationing for the war to stop Hitler.I have evaluated dementia:limited treatment options, behavioral interventions.Cognitive changes alterorientation to self,place, time, situation.Joanna and I sit on the memory care patio.The birdfeeder dances in the humid summer air.I've shared my artwork with Grandma Jofrom crayons' waxy scrawlto crisp acrylic colors.Today a t-shirt replaces my white coat.The war is over, grandma.The produce is from a grocery store.I redirect with another painting.This is a bridge in a park-She smiles: it's New York City, I miss going there.In the middle of Central Park,a cement bridge in a grassy parkspans a wide, still pond.Today, the colors of the bridge,reflected on the water,spark a glimmer of my grandmother.This time she knows the memory is in the past,as she tells me about New York in the Forties.With the beating of sparrow wings,the moment of clarity endsas past and present are blended again.When the sun sinks, my visit will fade.I clutch what happenedoutside, away from the clinical setting.What we cannot quantifywith A&O x1: oriented to self.
Topics: Humans; Female; Alzheimer Disease; Emotions; Brain; New York City
PubMed: 36443014
DOI: 10.1212/WNL.0000000000201602 -
Journal of the American Geriatrics... Feb 2021To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.
OBJECTIVES
To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.
DESIGN
Cross-sectional, national mail-based survey.
SETTING
American Medical Association Masterfile database.
PARTICIPANTS
U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62).
MEASUREMENTS
Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments.
RESULTS
Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type.
CONCLUSIONS
Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.
Topics: Aged; Caregivers; Cross-Sectional Studies; Female; Humans; Male; Mental Health; Middle Aged; Needs Assessment; Patient Care; Primary Health Care; Referral and Consultation; Respite Care; Risk Assessment; Sleep Wake Disorders; Social Conditions; Social Support; Stress, Psychological; United States
PubMed: 33217776
DOI: 10.1111/jgs.16945