-
Disability and Rehabilitation Nov 2023This scoping review was conducted to synthesize existing literature into a map of the common needs of families caring for patients with traumatic brain injury (TBI) at... (Review)
Review
PURPOSE
This scoping review was conducted to synthesize existing literature into a map of the common needs of families caring for patients with traumatic brain injury (TBI) at home.
MATERIALS AND METHODS
A systematic search of studies published between January 2012 and December 2022 was conducted across databases. The selected studies reported the needs or unmet needs of patients with TBI and/or their family caregivers (FCs).
RESULTS
A total of 12 publications were identified. The results suggest that the common needs of families caring for patients with TBI at home include: information about TBI as a disease; information about the continuum of TBI healthcare services; information about adaptive technologies; education and skilling of FCs; psychological support and counseling; physical and occupational therapy services; follow-up care and transitional care management; respite care; peer support; financial assistance, advocacy, and legal services; emotional support from the family and community; and assistance with physical patient care and instrumental activities of daily living.
CONCLUSION
The mapped needs provide insight into supportive interventions required to enhance the health outcomes of patients with TBI and their families during and after rehabilitation. The needs also highlight directions for research and healthcare services for patients with TBI.
PubMed: 37933167
DOI: 10.1080/09638288.2023.2278178 -
Current Opinion in Psychiatry Mar 2015Developmental disabilities are increasingly recognized, and remarkable progress is being made on the genetic and neurobiological underpinnings of many disorders. Yet,... (Review)
Review
PURPOSE OF REVIEW
Developmental disabilities are increasingly recognized, and remarkable progress is being made on the genetic and neurobiological underpinnings of many disorders. Yet, only a tiny percentage of the disability literature addresses families of children with disabilities. A review of recently published family studies reveals salient trends and gaps.
RECENT FINDINGS
Consistent with previous work, high levels of parent stress, illness, anxiety, and depression are apparent. Studies in the USA focused on parents of children with autism; in contrast, studies on parents of children with intellectual disabilities were almost always conduced abroad. Compared to other disabilities, families of children with psychiatric disorders and genetic syndromes are understudied. The majority of family studies are descriptive, with very few trials or interventions aimed at reducing parental stress. Of these, mindfulness practices and a peer-mentor model of treatment delivery hold much promise for effective stress reduction. Psychoeducational programs and respite care are differentially beneficial.
SUMMARY
A new era of family intervention research is in order. This work can take advantage of many advances in telemedicine, peer-mentor models, smart technology, and biomarkers as indices of change. Benefit could also stem from group interventions with parents who share similar concerns, regardless of their child's diagnostic label.
Topics: Child; Developmental Disabilities; Disabled Children; Family; Humans; Nervous System Diseases; Parents; Siblings
PubMed: 25594421
DOI: 10.1097/YCO.0000000000000129 -
JBI Database of Systematic Reviews and... Jul 2019The objective of this scoping review is to identify and characterize interventions, programs or models used to deliver respite care services to children and youth with...
OBJECTIVE
The objective of this scoping review is to identify and characterize interventions, programs or models used to deliver respite care services to children and youth with complex care needs and their families.
INTRODUCTION
Many children with complex chronic conditions require multifaceted home management plans to address their medical, social and emotional needs. The provision of this care often falls on the parents or primary guardians. Respite care is one strategy to provide families with a break from the demands of caring for a child with complex care needs; however, families commonly face barriers to obtaining respite care services.
INCLUSION CRITERIA
This scoping review will consider papers that include children and youth (0-25 years of age, in any location, with complex care needs, medical complexity or complex chronic conditions) and their families. Any interventions, programs or models aimed at delivering respite care services to this population will be included. Studies focusing on support provided at the end of life will be excluded. Only studies published in English will be included. No date limits will be set.
METHODS
A search will be conducted in five databases, as well as multiple sources of unpublished literature. The text words contained in the titles and abstracts of relevant articles and index terms will be used to develop a full search strategy. All potentially relevant papers will be retrieved in full. A pre-defined data extraction tool developed by the reviewers will be used, and extracted data will be presented in tabular form accompanied by a narrative summary.
Topics: Adolescent; Child; Chronic Disease; Humans; Parents; Respite Care
PubMed: 31169775
DOI: 10.11124/JBISRIR-2017-003998 -
International Psychogeriatrics May 2023To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia. (Review)
Review
OBJECTIVES
To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia.
DESIGN
Mixed-methods systematic review.
SETTING
Community-based social care (such as day care, respite care, paid home care, and peer support groups).
PARTICIPANTS
People living with dementia and unpaid carers.
MEASUREMENTS
Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst.
RESULTS
From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together.
CONCLUSIONS
People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.
PubMed: 37170588
DOI: 10.1017/S104161022300042X -
Nursing Mar 2023Nurses provide care in various settings and advocate for vulnerable populations. Recognizing the need for follow-up care after hospitalization and mobilizing necessary...
Nurses provide care in various settings and advocate for vulnerable populations. Recognizing the need for follow-up care after hospitalization and mobilizing necessary resources are part of caring for patients, including those experiencing homelessness. This article discusses how one community coalition assessed gaps in care that might be met by establishing medical respite in the community.
Topics: Humans; Adult; Respite Care; Hospitalization; Ill-Housed Persons
PubMed: 36820696
DOI: 10.1097/01.NURSE.0000918524.41501.98 -
International Journal of Environmental... May 2021Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where...
BACKGROUND
Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients.
METHOD
We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers' burden.
RESULTS
The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency.
CONCLUSIONS
A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.
Topics: Adolescent; Adult; Aged; Caregiver Burden; Caregivers; Female; Humans; Independent Living; Middle Aged; Randomized Controlled Trials as Topic; Respite Care; Thailand
PubMed: 34070766
DOI: 10.3390/ijerph18115873 -
Clinical Journal of the American... Aug 2023Globally, there is an interest to increase home dialysis utilization. The most recent United States Renal Data System (USRDS) data report that 13.3% of incident dialysis...
Globally, there is an interest to increase home dialysis utilization. The most recent United States Renal Data System (USRDS) data report that 13.3% of incident dialysis patients in the United States are started on home dialysis, while most patients continue to initiate KRT with in-center hemodialysis. To effect meaningful change, a multifaceted innovative approach will be needed to substantially increase the use of home dialysis. Patient and provider education is the first step to enhance home dialysis knowledge awareness. Ideally, one should maximize the number of patients with CKD stage 5 transitioning to home therapies. If this is not possible, infrastructures including transitional dialysis units and community dialysis houses may help patients increase self-care efficacy and eventually transition care to home. From a policy perspective, adopting a home dialysis preference mandate and providing financial support to recuperate increased costs for patients and providers have led to higher uptake in home dialysis. Finally, respite care and planned home-to-home transitions can reduce the incidence of transitioning to in-center hemodialysis. We speculate that an ecosystem of complementary system innovations is needed to cause a sufficient change in patient and provider behavior, which will ultimately modify overall home dialysis utilization.
PubMed: 37651291
DOI: 10.2215/CJN.0000000000000298 -
Archives of Public Health = Archives... 2018Due to the increase in the number of people with dementia, relatives often provide in-home care. This care constitutes a cornerstone of the healthcare system, and... (Review)
Review
BACKGROUND
Due to the increase in the number of people with dementia, relatives often provide in-home care. This care constitutes a cornerstone of the healthcare system, and maintaining these caregivers' well-being is therefore of paramount importance. Although respite interventions are generally considered an effective support system, they tend to be underutilized. The aim of this integrative literature review is to highlight the factors that promote and impede the use of respite interventions.
METHODS
Searches were conducted on the PubMed and CINAHL databases for studies of respite interventions from 1980 to 2016, and they yielded 51 articles of relevance.
RESULTS
Analysis of these articles revealed modifiable and immutable factors that influence the use of respite. The most cited topic categories in the literature were attributes of respite services and workload managed by caregivers, which is characterized by the onset of burden.
CONCLUSION
The factors promoting or impeding the use of respite interventions identified by our analysis highlight the need to adapt respite service attributes and use caregivers' skills to foster the partnership between healthcare teams and caregivers and to ensure the accompanying dyad's quality and safety.
PubMed: 30479766
DOI: 10.1186/s13690-018-0316-y -
Pediatrics International : Official... 2023The number of children with medical complexity (CMC) is increasing worldwide. For these children and their families, various forms of support are legislated; among them,...
BACKGROUND
The number of children with medical complexity (CMC) is increasing worldwide. For these children and their families, various forms of support are legislated; among them, short-stay respite care has a great unmet need. We examined such children's parents' preferences for respite care and their willingness to pay.
METHODS
We used discrete choice experiments (DCEs) to estimate the parents' preferences and willingness to pay. Parents whose children used overnight short-stay respite services answered a questionnaire to compare two hypothetical facilities of respite care having seven attributes and three levels. The DCE data was analyzed using the conditional logit model. The willingness to pay was calculated based on DCE estimates.
RESULTS
A total of 70 parents participated in this study and mean age of their children was 7.8 years (standard deviation [SD] 4.3). Among those children, 67 (96%) had the severest certification of disability, and 27 (38%) used a ventilator at home. We found that the parents' highest preferences was the best level of medical care level that can manage ventilators (coefficient 1.61, 95% confidence interval [CI]: 1.32-1.90). The better and best level of medical care, daily care, education/nursing, and emergency care were preferred over basic quality services. Willingness to pay for the best level of medical care was approximately 75,367 JPY per night.
CONCLUSION
This study shows a need for respite care that can deliver high-level medical care, especially for the management of ventilators, to CMC. This finding can serve as a basis for promoting respite care services.
Topics: Child; Humans; Respite Care; Parents; Home Care Services; Surveys and Questionnaires; Logistic Models
PubMed: 38088499
DOI: 10.1111/ped.15703 -
American Journal of Kidney Diseases :... Nov 2016Although intensive hemodialysis (HD) can address important clinical problems, increasing treatment also introduces risks. In this review, we assess risks pertaining to 6... (Review)
Review
Although intensive hemodialysis (HD) can address important clinical problems, increasing treatment also introduces risks. In this review, we assess risks pertaining to 6 domains: vascular access complications, infection, mortality, loss of residual kidney function, solute balance, and patient and care partner burden. In the Frequent Hemodialysis Network (FHN) trials, short daily and nocturnal schedules increased the incidence of access complications, although the incidence of access loss was not statistically higher. Observational studies indicate that infection-related hospitalization is an ongoing challenge with short daily HD. Excess risk may be catalyzed by poor infection control practices in the home setting in which intensive HD is typically delivered, but with fixed probability of bacterial contamination per cannulation, greater treatment frequency necessarily increases the risk for infectious complications. Buttonhole cannulation may increase the risk for metastatic infections. However, intensive HD in the home setting is associated with lower risk for infection than peritoneal dialysis. Data regarding mortality are equivocal. With extended follow-up of individuals in the FHN trials, short daily HD was associated with lower risk relative to the usual schedule, whereas nocturnal HD was associated with higher risk. In many, but not all, observational studies, short daily HD has been associated with lower risk than both in-center HD and peritoneal dialysis; however, observational studies are subject to unmeasured confounding. Intensive HD can accelerate the loss of residual kidney function in new dialysis patients with substantial urine output and can deplete solutes (eg, phosphorus) to the extent that supplementation is necessary. Finally, intensive HD may increase burden on patients and caregivers, possibly leading to technique failure. Some of these problems might be addressed with careful monitoring, so that relevant interventions (eg, antibiotics, retraining, and respite care) can be delivered. Ultimately, intensive HD is not a panacea for end-stage renal disease. Potential benefits and risks of treatment should be jointly considered.
Topics: Arteriovenous Shunt, Surgical; Catheterization, Central Venous; Humans; Infections; Kidney; Kidney Failure, Chronic; Renal Dialysis; Risk Factors
PubMed: 27772644
DOI: 10.1053/j.ajkd.2016.05.020