Overall survival of homebound patients without cancer receiving inpatient respite care in a hospital ward in Japan: a retrospective observational study.

OBJECTIVES: This study aimed to investigate the relationship between the use of inpatient respite care and the overall survival of homebound patients without cancer admitted to a hospital ward in order to assess the potential impact of inpatient respite care on the duration of home care. DESIGN: This was a single-centre, hospital ward-based retrospective observational study. SETTING AND PARTICIPANTS: From March 2011 to September 2018, 393 cancer-free older patients (median age, 84.0 years; 53.9% women) receiving continuous medical care at home through clinics were enrolled upon admission to a hospital ward. PRIMARY OUTCOME MEASURES: Continuous cumulative survival curves were generated using the Kaplan-Meier method for two groups: inpatient respite care users and non-users. Additionally, prognostic factors associated with all-cause mortality were assessed using the Cox proportional hazards model. RESULTS: The Kaplan-Meier curves for inpatient respite care users without cancer admitted to the hospital ward demonstrated a longer median survival time than non-users. Subgroup analyses for patients with or without neurological disorders yielded similar results. The HR for inpatient respite care use, after adjusting for age, sex and other confounding variables, was 0.480 (95% CI: 0.328 to 0.703, p<0.001). CONCLUSIONS: Homebound patients without cancer receiving inpatient respite care during the study period in Japan demonstrated higher overall survival than those who did not receive respite care. Subgroup analysis of patients with neurological disorders yielded similar results. Further studies are needed to investigate the benefits of inpatient respite care, including the exploration of appropriate methods for its use.

Parents' preferences for respite care of children with medical complexity.

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.

"Already too late": A qualitative study of respite care among mothers of children with special healthcare needs and disabilities.

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.

Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada.

OBJECTIVES: Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings. DESIGN: Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province. PARTICIPANTS: Thirty-two families (including 38 parents and 13 siblings) of CYSHCN. RESULTS: We identified six themes surrounding challenges experienced by families' in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges. CONCLUSIONS: Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.

Understanding factors influencing residential respite service use by carers of people living with dementia using Andersen's behavioural model of health services use: A qualitative study.

OBJECTIVES: Residential respite (RR) provides a valuable break for family carers, but little known about its offer, take-up or experiences of carers of people living with dementia. This paper aims to further understandings of factors influencing RR use. DESIGN: RR stakeholder workshop and qualitative interviews. SETTING: Stakeholder or living in the community in own home. PARTICIPANTS: RR stakeholders (13); family carers with experience of RR, or had declined it, or were planning to use it for the first time (n = 36). METHODS: Stakeholders participated in a workshop to discuss provision, models and funding of RR. Family carer interviews focused on expectations, experiences and outcomes of use of RR. Data were analysed thematically and mapped against Andersen's model of health service use. RESULTS: Identifying need for RR does not necessarily transpire into use. Planning and ease of booking were crucial for carers, but many felt there was little support with this. Systemic factors concerning funding, planning and booking RR act as barriers to its use. CONCLUSION: Findings highlight how systemic factors influence RR use. Discussing respite need in routine care planning or reviews may support carers and people living with dementia to consider RR, but system changes are needed to address barriers.

Medical respite post-hospitalization for adults experiencing homelessness.

ABSTRACT: 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.

Impact of Respite Care Services Availability on Stress, Anxiety and Depression in Military Parents who have a Child on the Autism Spectrum.

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.

The role of day-respite centres in supporting people with dementia to age in place: An interpretive phenomenological study.

ISSUE ADDRESSED: Day-respite care opportunities for people with dementia help prevent informal carer burnout and enable ageing in place. Care workers in these settings are an under-researched workforce who play a pivotal role in providing an engaging and supportive environment for clients with dementia. This study aimed to understand their experiences of providing care for people with dementia. METHODS: An interpretive phenomenological analysis explored the factors that challenge and enable day-respite centre workers of the sole facility in one regional Australian town to provide, what they perceive to be high-quality, person-centred care for people with dementia. Thematic analysis revealed four themes relating to the experience of providing care to people with dementia in this day-respite centre. RESULTS: Care challenges associated with the symptoms of dementia were recognised by participants; however, these issues were mitigated by the powerful enabling factors, including a strong focus on dementia-friendly care, operating within the centre. Thematic analysis yielded four themes of a person-centred workplace culture and strategy, embedded communication practices, provision of a safe and engaging environment and positive staff attributes. These themes were perceived to make participants' jobs more enjoyable, as well as improve their clients' and carers' quality of life. CONCLUSIONS: Day-respite centres offer a valuable resource for people with dementia and their carers, and their success depends on several key environmental and workforce factors. Accordingly, other facilities targeted at caring for this population should assess the feasibility of adopting similar strategies, including selecting and training specialised care staff, adapting the care environment to suit clients' physical and behavioural needs. and establishing routine multi-channel communication methods that effectively connect staff with other care providers, their clients, and their clients' carers. SO WHAT?: The lessons learned in this research could be implemented throughout the wider web of dementia care. Strategies might include the careful selection and training of staff; the provision of dedicated, safe dementia-friendly wards; and routine communication key stakeholders to ensure met-needs care. While there would be a need to scale such care to suit different individual care providers, even seemingly simple strategies would likely have positive effects in optimising care for people diagnosed with this debilitating neurocognitive disease.

Care coordination Experiences of Low-Income Parents of Children and Youth with Special Health Care Needs: An Exploratory Study.

OBJECTIVE: To explore parent perspectives on barriers, facilitators, and priorities related to coordinating care for children and youth with special health care needs (CYSHCN). METHODS: Thirty-nine parents of Medicaid-eligible CYSHCN participated in focus groups and completed a brief survey about their child's health insurance coverage, access to specialized services, and need for support with service coordination. Survey data were analyzed using descriptive statistics. Focus group data were analyzed by multiple independent coders using an approach that combines inductive reasoning with predetermined coding strategies. RESULTS: Sixty-seven percent of parents reported that they needed care coordination support. Qualitative data were organized into three main themes: the work of caregiving; the impact of caregiving on multiple aspects of parents' lives; and caregivers' needs related to emotional acceptance, service referrals and navigation, and developmental transitions. CONCLUSIONS: Findings support importance of services such as medical homes, care coordinators, peer navigators, respite care, and transition planning.

Program Outcomes and Health Care Utilization of People Experiencing Homelessness and Substance Use Disorder after Transitional Care Program Engagement.

People experiencing homelessness (PEH) have a high prevalence of mental illness and substance use disorder (SUD) and substantial acute and chronic disease burden. Transitional care and medical respite programs facilitate a safe transfer for PEH from the acute care to community setting. Many medical respite programs practice harm reduction strategies that can increase the opportunity for positive program outcomes for PEH with SUD. This transitional care and medical respite program evaluation explored program outcomes, health care utilization patterns, and comorbid conditions of persons with and without SUD. People experiencing homelessness with SUD had similar program outcomes and both groups had decreased acute care utilization after program engagement. A high prevalence of trimorbidity, which is associated with early mortality, was noted. Opportunities for harm reduction strategies to promote both social and clinical outcomes are offered.

Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation.

PURPOSE: This study examined the impact of respite care received by children with medical complexity (CMC) on their health-related quality of life (HRQOL). We hypothesized that out-of-home respite care would increase both opportunities to engage in activities and participation with non-family members and help with acquiring autonomy and social skills. DESIGN AND METHODS: This cross-sectional study of CMC aged between 8 and 18 years living at home used a web-based questionnaire survey that parents living with the target CMC answered for proxy evaluation of CMC's HRQOL (KIDSCREEN-27). We asked 3142 parents to participate in the study through 237 special-needs schools throughout Japan. Path analysis was used to estimate the variation in each aspect of HRQOL with respite care time of in-home care services, day care services, short-stay services, and school time. RESULTS: We analyzed the responses from 618 parents of CMC. The results showed that respite care by day care services and special-needs schools increased "physical well-being," "psychological well-being," and "peers and social support," which are components of the HRQOL. Furthermore, respite care at schools had an impact on "school environment." CONCLUSIONS: Respite care provided by special-needs schools and day care services has implications not only in terms of relief for caregivers but also in improving the HRQOL of CMC. PRACTICE IMPLICATIONS: Nurses can provide respite care that does not require parental accompaniment at school or day care facilities, which can lead to CMC's involvement in fostering autonomy and social skills. (249/250 words).

Characteristics of dementia family caregivers who use paid professional in-home respite care.

Caring for a person living with dementia (PLWD) can be challenging, making support services like respite important. Of the types of respite, research on paid professional in-home care specific to family caregivers of PLWD is limited. This study aimed to identify characteristics of dementia caregivers using paid in-home respite. A self-administered online survey (N = 98) examined use of in-home respite. Measures assessed depressive symptoms, burden, and self-rated health. Analyses included descriptive statistics and qualitative coding. Most respondents utilized weekly schedules of in-home respite with a moderate correlation between dependency and hours of respite. Caregivers' self-reported average health, depressive symptoms, and mild-to-moderate burden. The majority of users had lowered perceived stress, were satisfied with services, and indicated the importance of in-home respite during a pandemic. Future research should assess changes in use of paid in-home respite services and overall landscape of respite options for dementia caregivers.

Use of tangible, educational and psychological support services among Chinese American dementia caregivers.

BACKGROUND AND OBJECTIVES: Though many studies have examined the service utilization of dementia caregivers, there is limited empirical evidence from Asian Americans in this field. Guided by Andersen's behavioral model of health services use, we aimed to understand what factors were associated with utilizing multiple types of services among Chinese American dementia caregivers. RESEARCH DESIGN AND METHODS: We collected survey data from 134 Chinese dementia caregivers in New York City. Logistic regression models were conducted to test the associations between predisposing, enabling, and need factors and the likelihood of using tangible (home health aide, adult daycare, respite care), educational (lectures and workshops), and psychological (peer support groups and psychological counseling) support services. RESULTS: Several variables conceptualized by Andersen's model, including caregiver's knowledge about services, caring tasks, length of care and burden, and care recipient's physical and cognitive deteriorations, were significantly associated with higher possibilities of using multiple types of services. Three sociocultural factors-residing in Chinatown, availability of alternative family caregivers, and diagnosis of cognitive deterioration-were also associated with higher likelihood of using educational or psychological services. DISCUSSION AND IMPLICATIONS: The findings extend the existing literature on service utilization of caregivers by highlighting the importance of distinguishing types of services and considering sociocultural factors in future research and practice.

A Welcoming Space to Manage Crisis: The Wellness Respite Program.

The need for behavioral health care prevention, treatment, and recovery supports, including crisis alternatives, has grown and is now receiving federal support through enhanced funding. When a person experiences severe emotional distress, crisis alternatives are a viable option instead of inpatient hospitalization to address the distress and restore balance. Peer respite programs are voluntary, short-term, crisis alternatives for people experiencing mental distress. Models have evolved in response to funding and regulatory requirements, yet research is limited. The current article describes a unique peer-led program, Wellness Respite, in operation for 7 years, including data from recent satisfaction surveys and the role of nurses in the program. Implications of a home-like, short-term crisis alternative and the role of the nurse are emphasized. [Journal of Psychosocial Nursing and Mental Health Services, 60(11), 26-32.].

A Narrative Review of Pediatric Respite Care Initiatives in the United States.

Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.

Respite Service Use Among Dementia and Nondementia Caregivers: Findings From the National Caregiving in the U.S. 2015 Survey.

This study examined factors related to respite service use among caregivers and further tested the moderating effect of dementia caregiver status in these relationships using nationally representative U.S. data. Logistic regression analyses were conducted among 1203 caregivers (276 dementia and 927 nondementia caregivers). Caregivers' race and ethnicity as a predisposing factor, caregivers' self-rated health as an enabling factor, and care recipients' living arrangement and functional limitations as need factors were significantly related to respite service use. Moreover, dementia caregiver status moderated the association between enabling factors (i.e., household income, work status, and self-rated health) and respite service use. Our findings imply that dementia caregivers may be more in need of respite service use than nondementia caregivers when they have limited enabling factors (e.g., lower household income, nonworking status, poorer health). Policy and practice efforts that specifically support enabling factors are suggested to promote more respite service use among dementia caregivers.

The Effects of in-Home Respite Care on the Burden of Caregivers in Taiwan.

The utilization rate of respite care in Taiwan is low, and past studies that evaluated the effects of in-home respite care on caregiver burden are few. This two-wave panel study used Taiwan's long-term care plan 1.0 database and included 2342 care recipient-caregiver dyads who used home services to examine the impact of in-home respite care on caregiver burden. Propensity score matching was used to select 323 in-home respite service users matched with 646 nonusers as control groups (1:2 matching). The mixed effect model was applied to estimate the effects of receiving in-home respite care on caregiver burden. Results showed that compared with those of nonusers, caregiver burden scores of service users decreased significantly after receiving in-home respite care for more than 14 days (adjusted B = -0.14, SE = 0.05). The government should prioritize increasing the number of days of in-home respite care for those in need to reduce the caregiver burden.

Community-dwelling older adults and their informal carers call for more attention to psychosocial needs - Interview study on unmet care needs in three European countries.

BACKGROUND: Unmet care needs are usually defined in terms of receiving sufficient help in instrumental activities and activities of daily living. Research on unmet needs is mostly based on quantitative data. Older persons' and informal carers' views and experiences have received less attention. METHODS: In this paper, we rely on a definition of unmet needs which includes both unmet needs due to insufficient care and those situations where informal carers experience undue strain. Using theory-driven content analysis, we examine community-dwelling older adults' and their informal carers' experiences of unmet needs: what kind of unmet needs they have, why and in which ways these needs are left unmet and what would they want to do to improve the situation. The data consists of interviews gathered in Austria, Finland and Slovenia. RESULTS: Results of the analysis reveal that unmet needs are largely psychosocial in nature. The predominating task-oriented care systems often do not consider these as care needs. Using methods of qualitative content analysis, we conclude that care users' unmet psychosocial needs are related to lacking a personal relationship with care workers; means to maintain or develop social contacts and pursue activities and interests; and adequate home care services or respite care. Excessive responsibilities are put on informal carers as they top up and fill in the insufficient care. CONCLUSIONS: This study contributes to a broader understanding of unmet care needs: the relational aspects of care and the universal nature of psychosocial care needs should be addressed in care services.

The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study.

BACKGROUND: Respite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners. METHODS: Thirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis. RESULTS: Caregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency. CONCLUSION: This study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.