Design Considerations for the Development and Implementation of a Medical Respite for Older Adults Experiencing Homelessness in Metro Vancouver.

BACKGROUND: Older persons with lived or living experience of homelessness (PWLEs) often live with complex physical and/or mental health conditions which are challenged by poor access to health services, especially primary care. To fill the gap in the continuum of care following hospital discharge for PWLEs, medical respite provides health and shelter support for PWLEs who do not have acute care needs that qualify for a stay in a hospital bed, yet are too sick or frail to recover on the streets or in a traditional shelter. OBJECTIVE: This study examines how a medical respite could be designed for older PWLEs in Metro Vancouver, BC. RESEARCH DESIGN: Using a community-based participatory research approach, in-depth interviews and focus groups were conducted with PWLE (n=15) and service provider (n=11) participants. RESULTS: Participants offered rich suggestions about (a) the culture of the medical respite, (b) the physical design of a medical respite, (c) individuals who should be involved in medical respite delivery, (d) services a medical respite should provide, and (e) who the medical respite should serve. CONCLUSIONS: When designing a medical respite for older PWLEs, considerations include providing an environment where patients can rest, but also feel safe and be surrounded by persons who they trust and who care for them. Developing a medical respite that adheres to the tenets of trauma-informed and patient-centered care acknowledges the mistrust and traumatization that often accompanies homeless patients presenting to health care.

Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care.

BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency tool that enables the hospice to safely and effectively manage the use of beds for planned short breaks (respite care), preserving capacity for children requiring symptom management and end-of-life care. METHODS: A comprehensive literature review and existing tools were used to inform the development of the Martin House Dependency Tool Framework. Training was provided to staff and the tool was piloted before applying it across the hospice caseload. FINDINGS: The tool has been used on 431 children (93.1% of caseload). The tool enabled consistency of assessment and more effective management of resources, due to a contemporaneous understanding of the clinical needs of those on the caseload. CONCLUSION: The tool has enabled consistent and transparent assessment of children, improving safety, effectiveness and responsiveness, and the management of the workforce and resources.

Caregiving in Times of Uncertainty: Helping Adult Children of Aging Parents Find Support during the COVID-19 Outbreak.

The COVID-19 pandemic, which is especially dangerous to older people, has disrupted the lives of older people and their family caregivers. This commentary outlines the adaptive and emerging practices in formal supportive services for family caregivers, the changing types of support that family caregivers are providing to their older relatives, and the ways family caregivers are seeking informal caregiving support during the COVID-19 outbreak.

A clinical description of strategies to address traumatic brain injury experienced by homeless patients at Baltimore's medical respite program.

BACKGROUND: Medical respite programs provide a safe place for people experiencing homelessness to recover from an acute illness or injury. Many patients in respite programs have experienced a traumatic brain injury (TBI) that impedes their ability to complete the self-management tasks necessary to recover from an acute medical condition. Patients with brain injuries may also have behavioral problems that are difficult to manage in a medical respite setting. OBJECTIVE: This paper describes the experiences of one medical respite program in screening, assessing, and treating patients experiencing homelessness who have traumatic brain injuries. METHODS: Services by clinical providers were tailored to better address needs of those with a history of TBI, as well as implementation of environmental modifications. Two retrospective case studies were completed to illustrate the importance of addressing TBIs in respite programs. RESULTS: Modifications to programming can improve patient outcomes and assist in transitioning patients to appropriate community resources. CONCLUSIONS: Identifying and treating patients with TBIs in respite programs can result in long-term positive benefits for patients.

Recommendations for reducing harm and improving quality of care for older people in residential respite care.

OBJECTIVES: Residential respite care (RRC) is a vital service that supports older people and their informal caregivers to continue to live in the community. Older people in RRC have an increased risk of injury-related harm, such as choking and suicide, compared to permanent nursing home residents. However, the opportunities for the prevention of harm during a RRC admission are largely unknown. This study developed recommendations to reduce harm and improve quality of care for older people in RRC. METHODS: Experts developed, refined and prioritised recommendations through two consultation forums applying the modified nominal group technique and a follow-up online survey. Participants were purposively sampled from an existing network and were selected based on their expertise in aged care practice, nursing, policy, research, caregiver advocacy and quality improvement in the aged and healthcare sectors. Haddon's Matrix, an injury prevention framework, was applied to the recommendations. Final recommendations were released to over 300 organisations for validation and feedback. RESULTS: Five experts were involved in forum one, seven attended forum two, and a further seven completed the survey. Seventeen draft recommendations were developed and refined to 11 final recommendations, four of which were prioritised as most important for implementation. These included the following: (a) a planned preventative care model of RRC; (b) facilities that specialised in RRC; (c) optimising information gathered on RRC residents; and (d) a standardised procedure for admission, handover and discharge from RRC. We received limited feedback from the organisations, which did not alter the recommendations. IMPLICATIONS FOR PRACTICE: The recommendations developed in this study provide a valuable basis for the development of strategies to reduce harm and improve care in RRC and are a valuable first step towards improving practice. The next step is to empirically test the suggested recommendations to determine their effectiveness.

Assessing mechanisms of benefit in adult day programs: the adult day services process and use measures.

Objectives: A limitation of adult day service (ADS) research is that there remains little understanding of how these community-based long-term care programs operate to benefit clients or family caregivers (i.e. the process of ADS use). The purpose of this study was to validate the 'ADS Process and Use Measures' (APUM) which were developed to assess such mechanisms. Method: Participant observation and semi-structured interviews in two ADS settings resulted in qualitative data to inform a conceptual model, subscales, and Likert-scale items. Three experts in ADS research reviewed the initial 129-item version of the APUM to establish content validity, and 27 family caregivers of current or prior ADS clients provided feedback on face validity of a subsequent 58-item version. Results: Principal components and confirmatory factor analyses on a sample of 269 family members of ADS clients recruited from 90 programs throughout the U.S. established a measure featuring 5 domains, 12 reliable subscales, and 49 items. Analysis of discriminant and convergent validity found that various subscales from four of the domains (Why ADS is Used, Events Prior to Use, Why ADS Does Not Work, and Pathways to Benefits) were significantly associated (p < 0.05) with family caregiver distress and ADS client quality of life variables. Conclusion: The ADS Process and Use Measures effectively assess mechanisms of program benefit and could help to enhance the overall quality of these critical community-based long-term care options for older persons and their families.

Respite care services for children with special healthcare needs: Parental perceptions.

PURPOSE: Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much-needed temporary break. The purpose of this study was to examine parental perceptions of utilizing a respite care program. DESIGN AND METHODS: Twenty-two parents who had a child with special healthcare needs who attended a Midwestern respite care program completed a Participant Characteristic Form addressing their experiences caring for their child with special healthcare needs and using respite care services. Parents participated in a focus group (N = 4) to explore their perceptions and experiences of respite care participation. Multistage thematic analysis and descriptive statistics were used to analyze the data. RESULTS: Themes emerging from the data included: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program "fit"; and Respite is their special time too. Parents emphasized the benefits of respite care for their marital relationship, as well as the benefits to the children with special healthcare needs and their siblings. Parents also described the importance of tailoring respite care to the unique needs of their family. PRACTICE IMPLICATIONS: Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs by identifying unmet needs and making appropriate referrals to services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers whom parents can trust to provide for the complex healthcare needs of their children.

Comprehensive Support for Family Caregivers of Post-9/11 Veterans Increases Veteran Utilization of Long-term Services and Supports: A Propensity Score Analysis.

Family caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions.

Homeless people's experiences of medical respite care following acute hospitalisation in Denmark.

The aim of this study was to explore homeless people's health perspectives and experiences of a 2-week medical respite care programme following acute hospitalisation. There is a high level of health inequality when comparing the health status of homeless people to the general population, including increased mortality and morbidity. Homelessness predisposes an increased risk of infectious disease, cancer and chronic illness, such as diabetes and cardiovascular disease. Moreover, homeless people have a higher frequency of acute hospitalisation than general population estimates. In order to facilitate the transition from hospitalisation back to life on the streets, homeless people who were acutely hospitalised in the Capital Region of Denmark were offered 2 weeks of medical respite care from the day of discharge by a non-governmental organisation. This is a qualitative study with a phenomenological hermeneutical approach based on narrative interviews of 12 homeless people who received medical respite care from 1 March 2016 to 30 September 2016. Data were collected through individual semi-structured interviews and analysed according to Lindseth and Norberg's presentation of Paul Ricoeur's theory of interpretation. The analysis identified four themes: (i) basic needs are of highest priority; (ii) a safe environment provides security and comfort; (ii) social support is just as important as healthcare; and (iv) restitution facilitates reflection. The findings indicated that the medical respite care centre provided a place of rest and restitution following hospitalisation, which made room for self-reflection among the homeless people regarding their past and present life, and also their wishes for a better future. This study also indicates that a medical respite care stay can contribute to the creation of a temporary condition in which the basic needs of the homeless people are met, enabling them to be more hopeful and to think more positively about the future.

Palliative care professional's perceptions of barriers and challenges to accessing children's hospice and palliative care services in South East London: A preliminary study.

OBJECTIVES: Several barriers have been identified as preventing or delaying access to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs. METHODS: Qualitative-five children's palliative care professionals' perceptions were obtained from semi-structured interviews. RESULTS: Three themes emerged: availability and adequacy of child palliative care (e.g., unreliability of services), obstacles to accessing palliative care (e.g., logistical challenges), and cultural values and family priorities. CONCLUSION: These findings contribute to the equal opportunities dialogue in this sector and the need for future research to address the challenges identified.

Evaluation of a West Australian residential mental health respite service.

Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi-structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with "psychosocial disability" in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery-oriented respite services is highlighted.

Intergenerational care: an exploration of consumer preferences and willingness to pay for care.

OBJECTIVES: To identify feasible models of intergenerational care programmes, that is, care of children and older people in a shared setting, to determine consumer preferences and willingness to pay. METHOD: Feasible models were constructed in extensive consultations with a panel of experts using a Delphi technique (n = 23) and were considered based on their practical implementation within an Australian setting. This informed a survey tool that captured the preferences and willingness to pay for these models by potential consumers, when compared to the status quo. Information collected from the surveys (n = 816) was analysed using regression analysis to identify fundamental drivers of preferences and the prices consumers were willing to pay for intergenerational care programmes. RESULTS: The shared campus and visiting models were identified as feasible intergenerational care models. Key attributes of these models included respite day care; a common educational pedagogy across generations; screening; monitoring; and evaluation of participant outcomes. Although parents were more likely to take up intergenerational care compared to the status quo, adult carers reported a higher willingness to pay for these services. Educational attainment also influenced the likely uptake of intergenerational care. CONCLUSIONS: The results of this study show that there is demand for the shared campus and the visiting campus models among the Australian community. The findings support moves towards consumer-centric models of care, in line with national and international best practice. This consumer-centric approach is encapsulated in the intergenerational care model and enables greater choice of care to match different consumer demands.

Optimising residential respite care in nursing homes: Current problems and solutions for a better future.

AIM: To examine whether residential respite care increases the risk of harm to older people and suggest directions for future research and policy. BACKGROUND: Respite care is a vital part of the aged care system that supports dependent older people and their caregivers to continue residing in the community. There is little research determining whether an older person experiences harm from residential respite. METHODS: This commentary considered conceptual research and existing empirical evidence to determine whether the risk of death was greater during residential respite care for older people. RESULTS: Evidence on the mortality in contemporary respite care is extremely limited with the majority of studies published almost 20 years ago and focussing on planned respite admissions. The evidence available has limitations in design and lacks comparison groups and key variables relevant to outcome and risk stratification. Nonetheless, it provides a theoretical basis supporting that the potential for harm and mortality may be increased during a residential respite care admission. CONCLUSIONS: The question of whether residential respite care presents significant risks to older people remains unanswered. Substantial changes in practice since the last century make the existing empirical evidence redundant. However, there is much to learn by reflecting on omissions of important details from these studies. IMPLICATIONS FOR PRACTICE: A full and objective understanding of the harm associated with residential respite care for older people requires reopening and re-examining this area with robust research. Informed professional nursing practice and policy requires an empirical evidence basis to residential respite care.

Exploring the benefits of respite services to family caregivers: methodological issues and current findings.

OBJECTIVES: There is growing emphasis on empirical validation of the efficacy of community-based services for older people and their families, but research on services such as respite care faces methodological challenges that have limited the growth of outcome studies. We identify problems associated with the usual research approaches for studying respite care, with the goal of stimulating use of novel and more appropriate research designs that can lead to improved studies of community-based services. METHOD: Using the concept of research validity, we evaluate the methodological approaches in the current literature on respite services, including adult day services, in-home respite and overnight respite. RESULTS: Although randomized control trials (RCTs) are possible in community settings, validity is compromised by practical limitations of randomization and other problems. Quasi-experimental and interrupted time series designs offer comparable validity to RCTs and can be implemented effectively in community settings. CONCLUSION: An emphasis on RCTs by funders and researchers is not supported by scientific evidence. Alternative designs can lead to development of a valid body of research on community services such as respite.

Barriers to non-residential respite care for adults with moderate to complex needs: A UK perspective.

Respite aims to alleviate the stress and burden of caring for someone with an intellectual disability and/or autism. Respite can take place in a number of different ways, but most commonly occurs in a residential setting. Based on survey and interview data with carers (CAs), service users and stakeholders (STs) in a northern city in England, this article explores some of the perceived or actual barriers to availing 'non-residential' respite. A number of barriers to non-residential respite are identified. Residential respite appears to be the default conceptualization of 'respite' for carers, service users and stakeholders. Persuading carers, service users and stakeholders to give up the familiarity and safety of residential respite in favour of a non-residential alternative will be challenging unless those involved are more informed. Limitations and directions for future research are suggested.

Improving the quality of life of palliative and chronic disease patients and carers in remote Australia with the establishment of a day respite facility.

BACKGROUND: In the Northern Territory (NT) there is a lack of respite services available to palliative care patients and their families. Indigenous people in the NT suffer substantially higher rates of poorly controlled chronic disease and premature mortality associated with poor heath than the Australian population as a whole. The need for a flexible, community based, culturally appropriate respite service in Alice Springs was identified and, after the service had been operating for 10 months, a qualitative evaluation was conducted to investigate the experiences of people involved in the use and operation of the service. METHODS: Semi-structured interviews were conducted with patients, carers, referrers, and stakeholders. A total of 20 people were interviewed. Interpretative Phenomenological Analysis was used inductively to analyse the transcripts. Two case studies are also described which illustrate in greater detail the impact the respite service has had on people's lives. RESULTS: From the semi-structured interviews, two superordinate themes along with a number of sub themes were developed. The two superordinate themes described both "The Big Picture" considerations as well as the pragmatics of "Making the Service Work". The sub themes highlighted issues such as being stuck at home and the relief that respite provided. The case studies poignantly illustrate the difference the respite service made to the quality of life of two patients. DISCUSSION: The findings clearly indicate an improvement in quality of life for respite patients and their carers. The respite service enabled improved care coordination of chronic and complex patients as well as improved medication compliance and symptom management. As a result of this evaluation a number of recommendations to continue and improve the service are provided.

Medical Respite and Linkages to Outpatient Health Care Providers among Individuals Experiencing Homelessness.

Medical respite programs provide nursing care and case management to individuals experiencing homelessness following hospitalization for an acute medical problem. One goal of these programs is to link clients to outpatient providers to decrease their reliance on hospital services. Through qualitative interviews with staff members (n = 8) and clients (n = 14) at a medical respite program, we explored processes of, and challenges associated with, linking clients to outpatient care. Six themes were identified, which offer insight about important considerations when linking clients to outpatient providers and highlight the value of medical respite programs for this population.

Care pathway networks as a guideline for people with Dementia in Taiwan.

Dementia is a syndrome characterized by the progressive decline in cognitive function and memory that impairs a person's ability to function normally. Although dementia mainly affects older people, it is not a normal part of aging. The population of Taiwan is experiencing a multi-decade ageing trend and regrettably the absolute numbers of people with dementia is also rapidly rising. In 2008, the Taiwan Government initiated a ``Ten-Year Long-term Care Plan'' to categorize dementia's disability and severity, and it evaluates access to home care, respite care services, daycare or home nursing care. This review figure out the features of the features of ``Taiwan Dementia Policy: A Framework for Prevention and Care'' and discuss care pathway network as a guideline for people with dementia in Taiwan. The expectation is for many Taiwanese providers and patients in need simply don't know what services are available or how to access them. A properly designed dementia website could be one such effective tool to meet this need. There is an ongoing risk that future resources allocated will not reach the intended individuals unless this implementation problem is addressed urgently.

Improving policies for caregiver respite services.

This paper provides a template for the decade ahead regarding the delivery, supply, and funding of caregiver respite services. Policy changes are needed to address these issues as concerns about our country's ability to meet future caregiving needs are growing along with our aging population. Federal initiatives and state-level policies and programs affecting respite are reviewed and directions for policy advancement are highlighted. Much more work is needed to educate caregivers and the general public about the necessity for respite beginning early in the caregiving career to prevent burnout and other adverse effects. Because it is unlikely that there will be a sufficient number of direct-care workers to replace unpaid caregivers, improved policies are needed to ensure that their situation is sustainable through increased availability of high-quality respite and other services vital to caregiver health and well-being. Among the 2015 White House Conference on Aging's priorities in the next decade, policies on long-term services and supports will require focused attention on family caregivers and the direct-care workforce to strengthen their ability to give care now and support their own physical, emotional, and financial needs in the future.