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Journal of Hospice and Palliative... Aug 2022Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable,... (Review)
Review
Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.
Topics: Child; Eligibility Determination; Humans; Medicaid; Respite Care; United States
PubMed: 35470307
DOI: 10.1097/NJH.0000000000000867 -
Nursing Forum Jul 2017The aim of this article is to analyze the concept of respite care in the context of caring for a child with special healthcare needs. (Review)
Review
AIM
The aim of this article is to analyze the concept of respite care in the context of caring for a child with special healthcare needs.
BACKGROUND
Respite care has often been identified as an important resource for caregivers of children with special healthcare needs. It can help provide a break from the constant demands of caregiving.
DESIGN
A concept analysis was conducted using an evolutionary approach.
DATA SOURCE
The data source for the concept analysis was a review of literature addressing respite care for caregivers of children with special healthcare needs.
REVIEW METHODS
A review of the literature was conducted and a concept model was developed using an evolutionary approach.
RESULTS
A theoretical definition of respite care is provided and the defining attributes, related concepts, antecedents, and consequences of respite care are shown in a diagram of the concept of respite care.
CONCLUSIONS
The conceptual model provides a framework to help nurses better understand the concept of respite care in order to educate caregivers, provide appropriate referrals, serve as providers of respite care, and advocate for policy changes related to the provision of respite care services for caregivers of children with special healthcare needs.
Topics: Caregivers; Child; Disabled Children; Female; Humans; Male; Models, Nursing; Nursing Theory; Parents; Respite Care
PubMed: 27438939
DOI: 10.1111/nuf.12179 -
Comprehensive Child and Adolescent... Feb 2021Children with complex care needs form a diverse population with a variety of health and social care requisites in the presence of a range of complex symptoms and...
Children with complex care needs form a diverse population with a variety of health and social care requisites in the presence of a range of complex symptoms and diagnoses. An exploratory literature review with a systematic search of the current qualitative literature was undertaken to explore parents' perceptions and evaluation of respite care services for children with complex needs. A systematic search was undertaken using a pre-defined search strategy in six databases; CINAHL, EMBASE, PsycINFO, Applied Social Sciences Index & abstracts and Web of Science. Studies were screened using inclusion criteria and eight studies were included in the review. These were analyzed using thematic analysis based on Braun and Clarke framework. Findings identified that there was a limited availability of respite care services for children with complex needs. Parents' perceived that respite was beneficial for themselves, their child and other siblings in the family. Barriers to accessing respite were also identified. It is recommended that respite services should be flexible and appropriate to the family's needs. A combination of in home and out of home services that are responsive to families' needs and are flexible would be optimal. Qualitative research is considered most suitable to obtain the views of parents of children with complex needs. Further research is recommended in this area, particularly in determining how services may improve and what the views of children using the respite services and their siblings are regarding respite.
PubMed: 33620262
DOI: 10.1080/24694193.2021.1885523 -
Hemodialysis International.... Apr 2015Psychosocial aspects related to home hemodialysis (HD) play an important role in the success of home HD programs. Once patients commence HD at home, unique psychosocial... (Review)
Review
Psychosocial aspects related to home hemodialysis (HD) play an important role in the success of home HD programs. Once patients commence HD at home, unique psychosocial issues related to patient and care partner burden can emerge. Proactive professional support, peer support, respite care, travel support, and financial support from the home HD health care team must be a priority for patient care. If the psychosocial aspects are not proactively addressed, patients receiving HD at home may return to in-center HD and the program may struggle as a result. This review provides a psychosocial guide for new start-up home HD programs.
Topics: Hemodialysis, Home; Humans
PubMed: 25925820
DOI: 10.1111/hdi.12258 -
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