Respite Program Research Articles

How Attribution Theory Helps to Explain Psychiatric Nosology

By exposing the assumptions made about dysfunctional behaviors, treatment options can be better understood. Belief in the cause of a disorder determines what is done to alleviate it. By applying attribution theory to psychiatric nosology—categorization of psychiatry dysfunctions—attributional bias of clinicians can be shown. Primarily clinicians are biased to diagnose a patient’s dysfunction as internal, stable and uncontrollable. In reality most dysfunctions are periodic/cyclical and therefore unstable and through behavioral therapy, most are controllable. By changing the attributions, a different meaning of mental illness emerges. Historical evidence illustrates how the attribution of aberrant behaviors has changed which consequently resulted in different theories and treatments. From ‘spirits that invade the body’ of the Middle Ages to the ‘imbalance in the nervous energy’ of the Enlightenment, beliefs dictated how people were treated. From the punitive treatments of the Middle Ages to the ‘Moral Treatment’ of the Enlightenment. With the attribution of biological determinism, a new age of psychopharmacology was ushered in. All these treatment fads rely on different attributions rather than on scientific evidence. With Mad Studies promoting the perspective of the patients who use the mental health care system, the attribution of disease changes again, and a greater emphasis is placed on the external, unstable, and controllable aspects of madness. According to the theory ‘Power Threat Meaning Framework,’ madness is a mental strategy that has become mismatched with its current context. The context determines the expression of dysfunction. Future treatment requires a population-based approach that offers social prescribing, short-term respite programs, and broad community-based cognitive-behavioral therapies. The objective is to focus on alleviating the anxiety and distress experienced by the individual and to aim for personal and functional recovery rather than to aim for a purely clinical recovery.

Quality of life in a cohort of Kenyan children with cerebral palsy

AimThe objective of the study was to evaluate the quality of life in Kenyan children (age 4–18 years) with cerebral palsy (CP). MethodsA cross-sectional descriptive study was conducted. Children with CP were recruited from the pediatric clinics at the Aga Khan hospital Nairobi (AKUHN). Parent proxy-reports using CPQoL-child and CPQoL-adolescents were obtained. Clinical and demographic data were compiled from medical records and parent interviews. A Likert scale was utilized to determine QoL across several domains. ResultsOne hundred and fourteen child–parent dyads with CP were recruited. The median age of study participants was 8 years (IQR 3–13 years), with males being the majority (57.02 %). Parent proxy-reports using CPQoL-child scale were obtained for n = 93 and CPQoL-adolescents for n = 21 respondents. Parents in both groups reported low domain QoL scores pertaining to function, family health and rehabilitation service accessibility. InterpretationStigma, accessibility to services, therapies and schooling, particularly for children with severe functional limitations, remains a concern. Caregivers would benefit from awareness campaigns of available supports and from local community respite programs. Where national support systems exist, there are critical inefficiencies in service delivery to target population.

Exploring the Case: Toronto’s Respite Program for Families of Children with Complex Needs

Exploring the Case: Toronto’s Respite Program for Families of Children with Complex Needs

Toronto’s Respite Program for Families of Children with Complex Needs

Summary Destination Toronto (DT), Toronto’s Destination Marketing Organization (DMO), aims to bring visitors and conference attendees to Toronto. DMOs have an extensive network in the visitor economy that they can activate to address social issues in their communities. The well-being of caregivers to children with complex special needs is often overlooked despite the important role they play. The visitor economy can contribute some relief to this group by providing a pleasant break from day-to-day responsibilities of care. DT uses its network of tourism-related businesses to give back to the community through the Relax, Recharge, Renew (RRR) Program, offering a weekend trip to parents and caregivers of children with special needs. This case study displays the importance of having social intrapreneurs who drive change to provide resident-tailored tourism experiences and underscores the significance of local partnerships. Additionally, realistic considerations for replicability at other destinations are discussed. The case study highlights the potential to expand collaboration in the hospitality and tourism sector, providing enriching experiences to underserved residents. Information © The Authors 2024

Addressing healthcare disparities in homeless neurosurgical patients: A comprehensive literature review on strategies for equitable care and improved outcomes.

Homelessness is a growing concern in the US, with 3.5 million people experiencing it annually and 600,000 on any given night. Homeless individuals face increased vulnerability to 30-day hospital readmissions and higher mortality rates, straining the healthcare system and exacerbating existing disparities. This study aims to inform neurosurgeons on evidence-based strategies to reduce readmission and mortality rates among homeless patients by reviewing the literature on the impact of medical respite on 30-day readmission rates. The study aims to gauge the efficacy of medical respite in reducing hospital readmissions and improving health outcomes for homeless individuals. A comprehensive literature search was conducted across PubMed, Embase/Medline, and Cochrane databases, as well as consulting the National Institute for Medical Respite Care and the Department of Health Care Access and Information. Ten articles were chosen from an initial 296 to investigate the impact of respite programs on readmission rates among homeless patients. Homeless patients experience high readmission rates due to various factors. Interventions such as respite programs and a comprehensive approach to healthcare can lower these rates. Collaboration between hospitals and medical respites has proven particularly effective. Inadequate healthcare for homeless individuals leads to increased readmissions, longer hospital stays, and higher costs. Medical respites are a viable solution, but limited resources hamper their effectiveness. Therefore, it is crucial to facilitate cooperation between hospitals, respites, and other entities. Future research should focus on disparity in neurosurgical procedures and explore alternative services. An interdisciplinary approach is key to addressing healthcare inequalities.

Homelessness And Health: Factors, Evidence, Innovations That Work, And Policy Recommendations.

On a single night in 2023, more than 653,000 people experienced homelessness in the United States. In this overview, we highlight structural and individual risk factors that can lead to homelessness, explore evidence on the relationship between homelessness and health, discuss programmatic and policy innovations, and provide policy recommendations. Health system efforts to address homelessness and improve the health of homeless populations have included interventions such as screening for social needs and medical respite programs. Initiatives using the Housing First approach to permanent supportive housing have a strong track record of success. Health care financing innovations using Medicaid Section 1115 waivers offer promising new approaches to improving health and housing for people experiencing homelessness. To substantially reduce homelessness and its many adverse health impacts, changes are needed to increase the supply of affordable housing for households with very low incomes. Health care providers and systems should leverage their political power to advocate for policies that scale durable, evidence-based solutions to reduce homelessness, including increased funding to expand housing choice vouchers and greater investment in the creation and preservation of affordable housing.

Protocol of a mixed method research design to study medical respite programs for persons experiencing homelessness.

Medical Respite Programs (MRPs) characterize a care model that has been developed to address the health care and social needs of persons experiencing homelessness by providing post-acute hospital care in a safe environment. Although this model has been shown to reduce hospitalizations, improve health outcomes and increase access to health services, prior studies of MRP programs and outcomes have been limited to individual sites and may not generalize to the population of individuals receiving MRP care. This study protocol describes a mixed method design to collect organizational, provider, and patient-level data from a sample of MRPs.

EMERGING TECHNOLOGY-BASED INTERVENTIONS TO SUPPORT FAMILY CAREGIVERS

Abstract There are 53 million family caregivers in the U.S., most of whom experience difficulty coordinating care, health and mental health decline, social isolation, and loneliness. Furthermore, accessing community support services remains challenging. This gap in access can create a significant threat to caregivers’ wellbeing and quality of life. The need to develop innovative interventions to support family caregivers is urgent. This symposium will describe the potential of leveraging emerging technology-based interventions to support family caregivers. Speaker one will outline considerations for design and development of social engagement interventions for caregivers delivered via video-conferencing platforms. Speaker two will describe the development and initial testing of a touchscreen mobile application that supports communication between people living with dementia and their caregivers to promote person-centered care. Speaker three will describe the human-centered design of a digital health solution to improve symptom management in advanced cancer care for older adults, emphasizing specific strategies to incorporate evidence-based principles of digital inclusivity. Speaker four will present findings from a proof of concept study examining the acceptability of a virtual respite program for caregivers of individuals with dementia. Speaker five will explore the potential for crowdsourced mapping technologies to support caregivers of people living with dementia. The discussant will tie together themes, offer recommendations for future intervention research with family caregivers, and discuss implications of emerging technologies on practice, policy, and research.

VIRTUAL RESPITE FOR FAMILY CAREGIVERS

Abstract The COVID-19 pandemic was detrimental to the wellbeing of individuals everywhere, especially family caregivers. Over 20% of older caregivers reported difficulties finding time for self-care during the pandemic Respite is an avenue to self-care; however, virtual respite programs are nearly non-existent. In this proof of concept study, we examined the acceptability of a virtual respite program with eight family caregivers of individuals living with dementia. Virtual respite visits were delivered by graduate students who engaged the person with dementia in a tailored activity, thereby freeing time for the caregiver to have a respite break. Families received up to six weekly virtual respite visits totaling 122 to 295 minutes. Semi-structured interviews with participating caregivers were transcribed and coded using steps of thematic analysis. Caregivers expressed high acceptability for virtual respite because it was easily adaptable to their existing hardware (e.g., smart devices, laptops), accessible, and required little technological knowledge. They further expressed appreciation for tailored activities for care receivers that allowed respite time for their own self-care activity. Given the limited availability of respite services, there is a need to design and test new types of respite care. This virtual respite program is an opportunity to reach more caregivers.

USING COMMUNITY ENGAGEMENT TO DEVELOP, TEST, AND IMPLEMENT INTERVENTIONS FOR DEMENTIA CARE PARTNERS

Abstract Interventions for caregivers to persons living with dementia are numerous and target a wide array of outcomes. One challenge limiting the dissemination of research-based interventions is the complexity of translating the intervention models for a variety of community environments and situations. Interventions that plan for future translation and scalability during the development stages have a better chance of quickly and efficiently being adopted by community partners. This symposium describes the methods used and the lessons learned from five research projects that used various forms of community engagement to develop, adapt, and assess feasibility of caregiver interventions, while simultaneously preparing for their translation and scalability: 1) Eaton et al., present the process and benefits gained from partnering with dementia caregivers to iteratively develop the Enhancing Active Caregiver Training (EnACT) intervention. 2) Utz et al., discuss ways to use the RE-AIM implementation framework to guide the development and pilot-testing of the Time for Living and Caring (TLC) respite intervention. 3) Dassel et al., explore the use of community-based participatory methods to adapt a paper-based advance care planning guide to an interactive web-based LEAD (Life-Planning in Early Alzheimer’s and other Dementias) intervention. 4) Cotton et al., report on the lessons learned from a formative analysis of their processes used to culturally adapt an intergenerational respite program for older adults within the Latine community. 5) Supiano et al., describe how they engaged and trained nursing home social workers to develop and implement the PreLoss Group Support intervention for dementia family care partners.

Virtual Respite for Family Caregivers

AbstractBackgroundThere are over 11 million family caregivers to individuals living with Alzheimer’s in the U.S. The risk of caregiver burden and the inaccessibility of institutional respite create a need for in‐home respite programs. This proof of concept study examined the feasibility of an in‐home virtual respite program.MethodFamily caregivers of individuals with mild dementia received up to six student delivered in‐home virtual respite visits over two months. Semi‐structured interviews were conducted with family caregivers and student participants following the visits. The qualitative data were analyzed using thematic analysis with three coders.ResultFamily caregivers reported that the virtual respite program allowed time to engage in self‐care activities such as rest, exercise, and social interaction.ConclusionThis novel intervention freed time for family caregivers to receive respite in a virtual format. A future randomized trial is needed to estimate the effect of the intervention on psychosocial and clinical outcomes.

Virtual Respite for Family Caregivers

AbstractBackgroundThere are over 11 million family caregivers to individuals living with Alzheimer’s in the U.S. The risk of caregiver burden and the inaccessibility of institutional respite create a need for in‐home respite programs. This proof of concept study examined the feasibility of an in‐home virtual respite program.MethodFamily caregivers of individuals with mild dementia received up to six student delivered in‐home virtual respite visits over two months. Semi‐structured interviews were conducted with family caregivers and student participants following the visits. The qualitative data were analyzed using thematic analysis with three coders.ResultFamily caregivers reported that the virtual respite program allowed time to engage in self‐care activities such as rest, exercise, and social interaction.ConclusionThis novel intervention freed time for family caregivers to receive respite in a virtual format. A future randomized trial is needed to estimate the effect of the intervention on psychosocial and clinical outcomes.

Time Together: An Intergenerational Respite, Mentorship and Training Program

AbstractPeople living with dementia (PLWD) and their care partners (CP) experience physical and emotional stressors that are exacerbated by social isolation. Paying for in‐home respite care can be out of reach for many; the average cost of in‐home care is $28.00 with a three‐hour minimum. Furthermore, there is a critical gap in the dementia workforce (Weiss, 2020), leaving CP without access to affordable respite care, and PLWD without access to social engagement. The Penn Memory Center’s (PMC) Time Together (TT) and Weekly Smile (WS) programs are two low‐cost intergenerational respite and engagement programs that aim to increase social engagement for PLWD, reduce CP burden, and develop a geriatric care workforce. College students are trained to provide respite care and engagement for community‐dwelling PLWD and their CP. Families pay up to $10.00 (sliding scales offered) for up to 10 hours/week of companion/respite care. The student receives $10.00 an hour for their service. The PMC launched Time Together in 2019, delivering respite services in‐person. In 2020, the pandemic forced the program to pivot to a virtual model called WS. In January 2023 we began offering TT both in‐person and virtually to maximize accessibility and flexibility. Both the in‐person and virtual component are now called Time Together (TT).To assess the impact of the WS model we used a mixed‐methods design, using qualitative and quantitative assessments. The exploratory qualitative arm used conventional content analysis methods to describe the experiences of PLWD, CP, and student participants through semi‐structured interviews. In our findings from interviews with 3 PLWD, 3 CP, and 3 student participants, PLWD cited meaningful engagement and improved mood. CPs described the importance of protected time for self‐care. Student respite workers appreciated learning about aging and dementia and especially enjoyed developing empathy and relational practice. Participation was mutually beneficial to all and created a lasting impact.We continue to collect additional qualitative and quantitative to further evaluate findings from both the virtual and in‐person arms of Time Together for this updated abstract submission. Policy implications include recommendations for respite program structure and composition.

Time out weekly smile: A pilot test of a virtual respite program

Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multi-method pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.

Expanding the evidence for cross-sector collaboration in implementation science: creating a collaborative, cross-sector, interagency, multidisciplinary team to serve patients experiencing homelessness and medical complexity at hospital discharge.

Patients with medical and social complexity require care administered through cross-sector collaboration (CSC). Due to organizational complexity, biomedical emphasis, and exacerbated needs of patient populations, interventions requiring CSC prove challenging to implement and study. This report discusses challenges and provides strategies for implementation of CSC through a collaborative, cross-sector, interagency, multidisciplinary team model. A collaborative, cross-sector, interagency, multidisciplinary team was formed called the Buffalo City Mission Recuperative Care Collaborative (RCU Collaborative), in Buffalo, NY, to provide care transition support for people experiencing homelessness at acute care hospital discharge through a medical respite program. Utilizing the Expert Recommendations for Implementing Change (ERIC) framework and feedback from cross-sector collaborative team, implementation strategies were drawn from three validated ERIC implementation strategy clusters: 1) Develop stakeholder relationships; 2) Use evaluative and iterative strategies; 3) Change infrastructure. Stakeholders identified the following factors as the main barriers: organizational culture clash, disparate visions, and workforce challenges related to COVID-19. Identified facilitators were clear group composition, clinical academic partnerships, and strategic linkages to acute care hospitals. A CSC interagency multidisciplinary team can facilitate complex care delivery for high-risk populations, such as medical respite care. Implementation planning is critically important when crossing agency boundaries for new multidisciplinary program development. Insights from this project can help to identify and minimize barriers and optimize utilization of facilitators, such as academic partners. Future research will address external organizational influences and emphasize CSC as central to interventions, not simply a domain to consider during implementation.

Evaluation of the implementation of a medical respite program for persons with lived experience of homelessness

ABSTRACT Medical respite programs (MRPs) constitute a potential strategy to improve the continuum of care for persons who have lived experiences of homeless (PWLEH). A MRP was developed in Alberta, Canada, through a partnership between the provincial health authority (Alberta Health Services) and the province’s largest homeless shelter (Calgary Drop-In Centre). We conducted a qualitative study of 25 stakeholders who held an operational, administrative and/or healthcare provider role in the MRP’s design and implementation to evaluate the barriers and facilitators to its implementation using Proctor’s implementation framework. While stakeholders had a common motivation of addressing health inequity, the program’s acceptability and fidelity were hampered by a lack of clear common objectives and expectations. Program adoption was difficult due to differences in organizational policies and priorities. Program staff and leadership were dedicated to the patient population, enhancing feasibility, but the limited training and experience of frontline providers specifically in addictions and mental health resulted in important needs not being met (affecting intervention appropriateness). The lack of integration with community resources, despite being intended as a program to transition patients from hospital to community, affected program penetration. Our findings are relevant for other jurisdictions and organizations aiming to develop and implement similar interventions.

Relationship Matters in Dementia Caregiving: A Comparative Study in West Bengal, India

Numerous studies have revealed that adverse health issues are common in demented caregivers; however, less is known about the health consequences of spouse caregivers. The purpose of this study was to compare the psychological health of spousal and non-spousal caregivers of demented individuals. In addition, it also examined the association and strength of the relationship between spouse and non-spousal caregivers’ socio-economic condition. This was a cross-sectional study that included 136 caregivers of demented individuals. Among them, 55.89% ( n = 76) were a spouse. The findings suggest that spousal caregivers who care for their demented spouse feel higher anxiety and depressive symptoms as compared with non-spousal caregivers. Socio-demographic factors were shown to be an important predictor of spousal caregivers’ mental health condition. The findings of this study have major policy implications owing to the predicted increase in demand for caregivers, especially spousal caregivers, as the incidence rate of dementia rises over time. It is essential that we endorse not only the health of the care-recipient but also the spousal caregiver as well. We believe that improving access to caregivers’ respite programs would benefit spousal caregivers.

Experiential Learning for Prelicensure Nursing Students: A Pediatric Special Needs Respite Program.

A respite program at a southeastern university was developed to provide respite services to local families of children with special needs and to integrate a hands-on clinical experience for nursing students. To assess the nursing students' perceptions of participating in the respite program experience, a survey was administered to prelicensure nursing students. Analysis of survey data revealed all participants were satisfied with the respite experience, perceived they will be able to apply knowledge obtained, and acknowledged opportunities to enhance soft skills. Survey results can be used to affirm positive student perceptions associated with a respite clinical learning experience. Valuable data describing experiences of undergraduate nursing students who participated in the respite program was obtained. This innovative learning experience meets a community need for children with special needs while providing experiential learning with diverse populations. [J Nurs Educ. 2023;62(3):180-182.].

Predictors of self-reported general health status in people experiencing homelessness with serious mental illness.

The growing homeless population in the U.S.A. is disproportionately impacted by poor mental and physical health status, including a higher incidence of acute and chronic health problems, increased hospitalizations, and premature mortality compared to the general population. This study examined the association between demographic, social, and clinical factors and perceptions of general health status among the homeless population during admission to an integrated behavioral health treatment program. The study sample included 331 adults experiencing homelessness with a serious mental illness or co-occurring disorder. Participants were enrolled in services at a day program for unsheltered homeless adults, a residential substance use treatment program for males experiencing homelessness, a psychiatric step-down respite program for those experiencing homelessness following psychiatric hospitalization, permanent supportive housing for formerly chronically homeless adults, a faith-based food distribution program, and homeless encampment sites in a large urban area. Participants were interviewed using The Substance Abuse and Mental Health Services Administration's National Outcome Measures tool and a validated health-related quality of life measurement tool, SF-36. Data were examined using in elastic net regression. The study found seven factors to be particularly strong predictors of SF-36 general health scores.Male gender, "other" sexual identity, stimulant use, and Asian race were all associated with better perceptions of health status, while transgender status, inhalant use, and number of times arrested were associated with poorer perceptions. This study suggests targeted areas for health screening within the homeless population; however, more studies are necessary to demonstrate generalizability of the results.

EXPANDING WORLDS: ASSESSING STRATEGIES TO IMPLEMENTING A VIRTUAL REALITY PROGRAM IN RESPITE CARE

Abstract Virtual reality (VR) is an immersive experience that simulates real or imagined environments and provides an innovative solution to social isolation and loneliness. Implementation science was used to identify barriers and facilitators to implementing a novel VR intervention as part of a community-based participatory research project at Lifespan of Rochester within their Partners in Care (PIC) volunteer respite program. The VR intervention will be facilitated by PIC staff and volunteers with caregivers of community-dwelling persons living with dementia (PLwD) receiving respite services. A mixed-methods design was used to identify perceived barriers and facilitators to implementation. Focus groups and self-administered surveys were completed by PIC staff (Nf10) to assess their thoughts and concerns related to program implementation. Surveys included validated measures to assess self-rated ability to perform VR functional components, attitudes toward VR, beliefs on the acceptability, appropriateness, and feasibility of the VR program, effectiveness of improving comfort, confidence, and preparedness of facilitators. Identified barriers included lack of VR knowledge, skills, and confidence in capabilities; concerns related to safety, confusion, and triggers for PLwD; and the need to strengthen buy-in from staff. Implementation strategies were selected from the Expert Recommendations for Change project and tailored to support effective uptake and behavior change among PIC staff and volunteers. Identified evidence-based strategies included training and shadowing opportunities, identifying champions, and developing a trauma-informed approach manual. These findings illustrate the need to carefully examine organizational factors that can impede the implementation. The benefits of this approach and the lessons learned will be discussed.