Self-Directed Home- and Community-Based Services Improve Outcomes for Family Caregivers: A Systematic Review.

BACKGROUND AND OBJECTIVES: Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes. RESEARCH DESIGN AND METHODS: We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework. RESULTS: Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers. DISCUSSION AND IMPLICATIONS: Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.

WHO, WHEN, HOW: a scoping review on flexible at-home respite for informal caregivers of older adults.

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.

Healthcare and social care professionals' experiences of respite care: a critical incident study.

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.

Grandparent Caregivers Lived Experiences and Resource Needs/Use During the COVID-19 Pandemic.

This project examined the impacts of the COVID-19 pandemic on grandparent caregivers, grandchildren, family dynamics, and resources to mitigate and navigate crises. Phone interviews were conducted with 24 grandparent caregivers using a semi-structured interview guide. Caregivers explained that the pandemic had impacted them and their grandchildren by increasing emotional distress, social isolation, financial difficulties, and challenges with education. Helpful resources consisted of financial support, respite care, and support for grandchildren. Thus, there is a need to provide grandparent caregivers with the same resources that foster care providers receive - particularly when faced with challenges such as the COVID-19 pandemic.

Association Between Community Elderly Care Services and the Physical and Emotional Burden of Family Caregivers of Older Adults: Evidence from Beijing, China.

The rate of usage of community elderly care services in China is low, and past studies about the effects of these services on caregiver burden domestically are few. This study used a large sample of Beijing census data (n = 55,634) to examine the impact of these services on caregiver burden. Logistic regression and propensity score matching were used to estimate the effects. The results showed that meal assistance, respite care, and spiritual comfort are all significantly associated with a lower likelihood of perceived emotional burden among caregivers, while only respite care is very significantly associated with a lower likelihood of feeling physically burdened. However, the effects of these services on caregiver burden also depend on the activities of daily living performance and location of residence of the care recipients. The practical implications for policy makers are discussed.

Factors Influencing Caregivers' Use of Respite Care Services: Secondary Analysis of the National Study of Caregiving.

This study examines when and why unpaid caregivers use respite services. We conducted a secondary analysis of the 2017 National Study of Caregiving (NSOC) Wave III, a U.S. nationally representative sample comprising 2652 unpaid caregivers. We found that unpaid caregivers reporting financial, physical, and emotional difficulties in caregiving were more likely to use respite care services than those not reporting these challenges. White, non-Hispanic caregivers reporting that they received support from their social networks (families/friends) were more likely to use respite care services than non-White and/or Hispanic caregivers receiving such support. Non-White and/or Hispanic caregivers who belonged to or attended support groups were more likely to use respite care support than those without social group affiliation. Respite care is underutilized in the U.S. despite its value and efficacy in supporting caregivers' mental and physical well-being. Policies are necessary to increase availability and access to respite services for diverse unpaid caregivers.

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.

La interpretación del sueño y sus similitudes con el juego: una técnica para aplicar en un dispositivo clínico de Françoise Dolto / Les similitudes dans l'interpretation du reve et du jeu: une technique applicable dans un lieu d'accueil enfant-parent / Dream interpretation ant its similarities with the play: a method to apply ina Dolto's maison verte project / A interpretação do sonho e suas semelhanças com a brincadeira: uma técnica para aplicar em um dispositivo clínico de Françoise Dolto

¿Cómo nos puede ayudar el método de la interpretación de los sueños a entender los elementos arcaicos presentes en el juego del niño de 0 a 4 años, en un dispositivo clínico inspirado en la Maison Verte creada por Françoise Dolto? En este artículo describiremos las similitudes entre el sueño y el juego del niño, particularmente con respecto al trabajo del sueño. Propondremos que los mismos mecanismos del sueño están presentes en el juego del niño como parte de un contenido manifiesto. Enseguida propondremos que es posible interpretar el contenido latente del juego trasponiendo el método de la interpretación de los sueños gracias a la información aportada por los padres que acompañen al niño. Para explicar esta técnica, examinaremos el ejemplo de juego de unos niños, tomado de un Lugar de Acogida de Niños y Padres que se adhiere a los principios de la Maison Verte AU

Comment la méthode d'interprétation des rêves peut-elle nous aider à comprendre les éléments archaïques présents dans le jeu des enfants de 0 à 4 ans, dans un dispositif clinique inspiré de la Maison Verte créée par Françoise Dolto? Dans cet article, nousdécrirons les similitudes entre le rêve et le jeu de l'enfant, notamment en ce qui concerne le travail du rêve. Nous proposerons que les mêmes mécanismes oniriques sont présents dans le jeu de l'enfant dans le cadre d'un contenu manifeste. Ensuite, nous proposerons qu'il est possible d'interpréter le contenu latent de ce jeu en transposant la méthode d'interprétation des rêves grâce aux informations fournies par les parents accompagnan l'enfant. Pour expliquercette technique, nous examinerons un exemple de jeu d'enfants, tiré d'un Lieu d'Accueil pour Enfants et Parents qui adhère aux principes de la Maison Verte AU

How can the dream interpretation method help us to understand the archaic elements present in the play of children from 0 to 4 years old, in a clinical device inspired by the Maison Verte project created by Françoise Dolto? In this article we will describethe similarities between the child's dream and play, particularly regarding to dream-work. We will propose that the same dream mechanisms are present in the child's play as part of a manifest content. Then we will propose that it is possible to interpret the latent content of this play by transposing the dream interpretation method thanks to the information provided by the parents. To explain this technique, we will examine an example of children's play, taken from a Dolto's Maison Verte Project AU

Como o método da interpretação dos sonhos pode nos ajudar a compreender os elementos arcaicos presentes nas brincadeiras das crianças de 0 a 4 anos, em um dispositivo clínico inspirado na Maison Verte criada por Françoise Dolto? Neste artigo, descreveremos as semelhanças entre o sonho e a brincadeira da criança, principalmente no que diz respeito ao trabalho onírico. Proporemos que os mesmos mecanismos oníricos estão presentes na brincadeira da criança como parte de um conteúdo manifesto. Imediatamente propomos que é possível interpretar o conteúdo latente desta brincadeira transpondo o método de interpretação dos sonhos graças às informações fornecidas pelos pais. Para explicar est técnica examinaremos um exemplo de brincadeira infantil, retirado de um Local de Acolhimento para Crianças e Pais que segue os princípios da Maison Verte AU

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.

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.