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The Lancet. Oncology Feb 2024People experiencing homelessness have not yet benefited from the substantial progress made in managing cancers, including advances in chemotherapy and radiotherapy,... (Review)
Review
People experiencing homelessness have not yet benefited from the substantial progress made in managing cancers, including advances in chemotherapy and radiotherapy, surgical interventions, multidisciplinary team approaches, and integrated cancer care models. People experiencing homelessness are at higher risks of developing cancers and their mortality due to cancer is twice that of the general population. Potential interventions to improve access to cancer treatment include alliances and active engagement with community organisations and shelters, cancer case management and peer-to-peer support, mHealth and navigation strategies, tailored hospital discharge to adult group homes, well equipped subacute rehabilitation centres, and specialised shelters and respite housing to assure appropriate follow-up care. Other interventions include improving preventive care, expanding data, targeted policy efforts, and broader housing advocacy. In this Personal View, I discuss challenges and opportunities in cancer treatment, with a review of the current evidence on potential interventions, and highlight strategies to improve access to cancer care for homeless populations.
Topics: Adult; Humans; Ill-Housed Persons; Housing; Aftercare; Neoplasms
PubMed: 38301706
DOI: 10.1016/S1470-2045(23)00567-3 -
African Journal of Disability 2023Families are the primary caregivers for persons with intellectual disability (ID), offering informal support to ensure community living. Ensuring families are adequately... (Review)
Review
BACKGROUND
Families are the primary caregivers for persons with intellectual disability (ID), offering informal support to ensure community living. Ensuring families are adequately supported is key to reduce the financial, physical, mental and social toll which long-standing inadequately supported care giving may evoke. Respite care is such a support service offered to caregivers and care-recipients with ID.
OBJECTIVE
Part of a larger study aimed at developing a respite care service framework for persons with ID for South Africa, the review aimed to elucidate what principles and practices inform current respite care services for this population globally.
METHOD
The Joanna Briggs Institute (JBI) scoping review framework guided the review. Databases were searched using key and surrogate terms for relevant literature published from 2006 to 2021.
RESULTS
Thirty-one sources met the inclusion criteria from 417 screened sources of evidence. These were published between 2006 and 2020, and included grey and peer-reviewed articles, the latter mostly mixed design. Information on respite care service characteristics, principles, practices, guidelines, evaluations and impacts were found for high- but not low-and-middle-income countries (LMICs).
CONCLUSION
There is an existing knowledge base that can be drawn on to inform the development of quality respite care. The lack of published information on respite care in LMICs necessitates further research to ensure contextually appropriate respite care developments in these settings.
CONTRIBUTION
This study contributes to the knowledge base on respite care for persons with ID and points out the research gap in LMICs.
PubMed: 38090196
DOI: 10.4102/ajod.v12i0.1115 -
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 -
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 -
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 -
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 -
Health Expectations : An International... Sep 2023Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden,...
INTRODUCTION
Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems.
METHODS
We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps.
FINDINGS
Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers.
CONCLUSION
The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN.
PATIENT OR PUBLIC CONTRIBUTION
The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.
PubMed: 37705308
DOI: 10.1111/hex.13831 -
BMC Health Services Research Jun 2024As the world population is aging, considerable efforts need to be put towards developing and maintaining evidenced-based care for older adults. Respite services are part... (Review)
Review
BACKGROUND
As the world population is aging, considerable efforts need to be put towards developing and maintaining evidenced-based care for older adults. Respite services are part of the selection of homecare offered to informal caregivers. Although current best practices around respite are rooted in person centeredness, there is no integrated synthesis of its flexible components. Such a synthesis could offer a better understanding of key characteristics of flexible respite and, as such, support its implementation and use.
METHODS
To map the literature around the characteristics of flexible at-home respite for informal caregivers of older adults, a scoping study was conducted. Qualitative data from the review was analyzed using content analysis. The characterization of flexible at-home respite was built on three dimensions: WHO, WHEN and HOW. To triangulate the scoping results, an online questionnaire was distributed to homecare providers and informal caregivers of older adults.
RESULTS
A total of 42 documents were included in the review. The questionnaire was completed by 105 participants. The results summarize the characteristics of flexible at-home respite found in the literature. Flexibility in respite can be understood through three dimensions: (1) WHO is tendering it, (2) WHEN it is tendered and (3) HOW it is tendered. Firstly, human resources (WHO) must be compatible with the homecare sector as well as being trained and qualified to offer respite to informal caregivers of older adults. Secondly, flexible respite includes considerations of time, duration, frequency, and predictability (WHEN). Lastly, flexible at-home respite exhibits approachability, appropriateness, affordability, availability, and acceptability (HOW). Overall, flexible at-home respite adjusts to the needs of the informal caregiver and care recipient in terms of WHO, WHEN, and HOW.
CONCLUSION
This review is a step towards a more precise definition of flexible at-home respite. Flexibility of homecare, in particular respite, must be considered when designing, implementing and evaluating services.
Topics: Humans; Caregivers; Respite Care; Aged; Home Care Services; Surveys and Questionnaires; Qualitative Research; Female
PubMed: 38926712
DOI: 10.1186/s12913-024-11058-0 -
Journal of Pediatric Nursing 2023Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite...
BACKGROUND
Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite care services provide temporary relief for PCHNs from their caregiving responsibilities. Several studies have examined why PCHNs do not make greater use of these potentially supportive services, but existing studies do not focus on the psychological or subjective aspects of this process.
OBJECTIVES
The present study aims to understand the reasons why PCHNs, mothers in particular, (do not) use these services, with the underlying goal of understanding what parents' needs and expectations are regarding these services.
METHODS
The present study is based on a qualitative thematic analysis of the experience of respite services of 14 Belgian mothers PCHN.
RESULTS
The results showed that PCHNs regularly exceed their limits and are often on the verge of physical and emotional exhaustion and that respite services could be a way to meet their needs. However, issues of availability and accessibility impede equal access to these services.
CONCLUSIONS
These findings highlight the need for a comprehensive approach to respite care, by including PCHNs in the process as early as possible, not normalizing exhaustion as the trigger, and not focusing solely on the needs of children when the need arises.
IMPLICATIONS FOR PRACTICES
Increasing the flexibility of the services, providing a reassuring environment, facilitating administrative procedures, and providing information about these services as early as possible appear to be priorities for facilitating the use of respite care services.
Topics: Female; Adolescent; Child; Humans; Respite Care; Disabled Persons; Parents; Qualitative Research; Health Services Needs and Demand; Caregivers
PubMed: 37414622
DOI: 10.1016/j.pedn.2023.06.017