Respite Provision Research Articles

A mixed-methods evaluation of the impacts of an online Carer wellbeing and connection program

ObjectiveTo evaluate a facilitated, 90-min session, delivered for four weeks, Online Carer Wellbeing and Connection Program in Victoria, Australia. MethodsOne hundred and three carers took part in the evaluation. Eighty-six completed both pre- and post-program surveys evaluating program impacts on psychological distress, perceived loneliness, and social support. Qualitative interviews were conducted (n = 76) post-program for experiential data. FindingsPaired samples t-tests showed significant decreases between pre- and post-program for psychological distress (M = 25.10, SD = 7.08; M = 22.00, SD = 6.57; t(85) = 4.88, p = 0.000), perceived loneliness (M = 6.69, SD = 1.89; M = 6.14, SD = 1.76; t(85) = 3.45, p = 0.000) and perceived social support (M = 8.31, SD = 2.48; M = 8.83, SD = 2.21; t(85) = −2.54, p = 0.013). Thematic analysis identified positive experiences and the mechanisms of action (or the ingredients for program success) as: 1. Delivery by a trained facilitator; 2. Provision of respite for person being cared for during meetings; 3. Technical assistance; 4. Online modality; 5. Inclusivity; 6. Diversity of experience; 7. Shared understanding; 8. Safety; 9. Emotional release; 10. Reflection, and; 11. Self-care practices. InnovationA model illustrating the mechanisms of action based on the findings of the mixed-methods evaluation is presented to support wider implementation and translation. ConclusionThe online program effectively reduced psychological distress and loneliness and improved carer wellbeing.

Using an Eco Art Activity Program to Improve Well-Being for Family Caregivers

Unpaid caregivers experience stress, anxiety, and mental health issues because they struggle to find time for their self-care. Taking a break or getting respite time outside the home is incredibly challenging. Identifying respite providers is complex, and the Covid-19 Pandemic affected movement outside the home.

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.

Caregivers\u2019 experience of sleep management in Smith\u2013Magenis syndrome: a mixed-methods study

BackgroundSmith–Magenis syndrome (SMS) is a rare genetic syndrome associated with a unique profile of early morning waking and daytime sleepiness. Children with SMS evidence high rates of self-injury and aggression and have a preference for adult over peer attention, with strong motivation to interact with a particular caregiver. In addition, people with SMS have lower adaptive functioning skills relative to cognitive abilities and demonstrate high levels of impulsivity. Taken together, these factors may result in individuals being awake overnight requiring vigilant caregiver supervision. Despite these complexities, no study has described the strategies caregivers take to keep their children with SMS safe overnight or considered the impact of these experiences on caregivers or the wider family.MethodsThe current study used a mixed-methods approach to consider sleep management strategies and challenges for caregivers of people with SMS at different ages. Caregivers completed an international online survey about sleep management and related difficulties, use of interventions and access to services and support. Semi-structured interviews were conducted with 14 caregivers in the UK to increase understanding of caregiver experiences and priorities for change in the UK context. Interviews were transcribed verbatim and coded using thematic analysis.ResultsEvidence from the online survey (n = 40) revealed wide-ranging impacts of poor sleep on the person with SMS and the wider family. Only 5% of caregivers reported that the sleep problems had no impact on their child, and 76% reported a moderately or extremely significant impact on themselves. For some individual caregivers, sleep management difficulties improved over time whereas for others no change was reported. Weekly respite emerged as the ideal provision for 49% of caregivers, although only 14% had access to this. The majority of caregivers (54%) received no respite. Thematic analysis of qualitative interviews revealed interactions between aspects of the behavioural phenotype of SMS which may contribute to complex and unusual presentations in relation to sleep management and safety.ConclusionsCaregivers’ priorities for sleep management and support were delineated, with key implications for services in terms of the use of SMS-sensitive strategies and respite provision.

Parents of Children With Medical Complexity Are Essential Health Care Personnel

* Abbreviations: CDC — : Centers for Disease Control and Prevention CMC — : children with medical complexity COVID-19 — : coronavirus disease 2019 The coronavirus disease 2019 (COVID-19) pandemic has created a national and global crisis. The United States has invested tremendous effort and resources to fast track severe acute respiratory syndrome coronavirus 2 vaccines from conception to market in 1 year, an amazing scientific achievement. Public health experts are now leading the distribution of COVID-19 vaccines. The Centers for Disease Control and Prevention (CDC) recommends that health care personnel be offered COVID-19 vaccination during the early phases of distribution. Health care personnel are broadly defined and include emergency medical service personnel, nurses and nursing assistants, physicians, technicians, therapists, dentists, dental hygienists and assistants, phlebotomists, pharmacists, students and trainees, contractual staff, dietary and food services staff, environmental services staff, and administrative staff. We strongly recommend that parents and family caregivers (collectively referred to as parents in this article) of children with medical complexity (CMC) be included in the early phases of vaccine distribution because they serve as essential frontline health care personnel. CMC have significant chronic health conditions that involve multiple organ systems, substantial health service needs, major functional limitations, and high health resource use. They have high levels of medical fragility, technology dependencies (tracheostomies, ventilators, feeding tubes, intrathecal baclofen infusion systems, and others), and psychosocial complexities. We identify CMC as those who have ≥3 organ systems affected (≥3 Feudtner … Address correspondence to Nancy A. Murphy, MD, FAAP, FAAPMR, Division of Pediatric Physical Medicine & Rehabilitation, Department of Pediatrics, School of Medicine, University of Utah, 81 North Mario Capecchi Dr, Salt Lake City, UT 84113. E-mail: nancy.murphy{at}hsc.utah.edu

Resource allocation in dementia care: comparing the views of people with dementia, carers and health and social care professionals under constrained and unconstrained budget scenarios

Background People with dementia and their carers have a wide range of health and social care needs. People with dementia, carers and health and social care professionals (HSCPs) all have different perspectives on dementia care. Differences among these groups are important for commissioners of services and for front-line HSCPs. Objective To compare the service recommendations of people with dementia and carers with those of HSCPs, under different budgetary conditions. Methods A mixed-methods approach, which builds on the Balance of Care method, was used. Nine workshops were held with 41 participants from three groups: people with dementia, carers and HSCPs. Participants were asked to make decisions on a set of services for case types of dementia under two scenarios: a no budget constraint (NBC) scenario and a budget constraint (BC) scenario. Results While each group allocated resources in broadly similar overall proportions, important differences in emphasis emerged: (i) people with dementia and carers placed more emphasis on psychosocial supports than HSCPs; (ii) carers put more emphasis on respite opportunities for carers; and (iii) carers identified residential care as the most suitable setting for the person with dementia more frequently than health care professionals. Conclusion Our findings suggest that the importance of psychosocial interventions, including counselling and peer support programmes, are currently underestimated by HSCPs. The provision of in-home respite is highly valued by carers. Even with unconstrained resources, some carers do not judge home care to be a viable option for dementia case types with high-level care needs.

The ANT Home Care Model in Palliative and End-of-Life Care. An Investigation on Family Caregivers' Satisfaction with the Services Provided.

The World Health Organization plan for a Decade of Healthy Ageing 2020–2030 has established some priorities in the field of palliative and end-of-life care. It states that “people require non-discriminatory access to good-quality palliative and end-of-life care” and recommends the “implementation of strategies for the provision of information, training, respite and support for informal caregivers”. The priorities described are in line with the home care services that National Tumor Assistance (ANT) Foundation has been providing in Italy. This 5-years investigation was designed to measure caregivers’ satisfaction and determine what types of support services are associated with greater satisfaction. 5.441 family caregivers filled out autonomously a 6-item questionnaire at the end of home care assistance, focusing on the level of satisfaction with the social and health services received. The overall data indicate a high satisfaction rate for the home care assistance received. In particular, participants rate positively the assistance provided by healthcare professionals (physicians, nurses and psychologists). The most appreciated aspects of assistance are those ensuring a global management of patients and their families, whereas an area of deficiency emerged was the continuity of care, suggesting the importance to implement the networks between the health care facilities and home care services. The present investigation constitutes a mean to highlight the aspects associated with greater satisfaction and the ones perceived as less satisfactory by caregivers. Moreover, this research constitutes a crucial instrument to improve home care assistance provided by ANT ensuring the best quality of life for both patients and their families.

Staff and family views of alternative respite services for adults with intellectual disabilities – aims, outcomes and experiences

Background Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants’ perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

Adult Day Service Use Decreases Likelihood of a Missed Physician's Appointment Among Dementia Caregivers.

Adult day services (ADSs) that provide community-based supervised support for persons with dementia (PWD) may also function as a respite for familial caregivers to attend to self-care needs. Guided by a revised version of the Andersen Healthcare Utilization Model, the objective of this study was to identify the association between use of ADSs and a missed physician's appointment among family caregivers for community-dwelling familial PWD. A secondary objective was to identify other predisposing, enabling, and need factors associated with a missed physician's appointment. Secondary analysis of baseline, cross-sectional data from two randomized controlled trials (Advancing Caregiver Training, n = 272; and Care of Persons With Dementia in Their Environments, n = 237). Community. Community-dwelling caregivers for PWD (n = 509). Missed physician's appointment was measured using the caregivers' self-report of one or more missed physician's appointments (yes/no) in the past 6 months. ADS use was measured using the caregivers' self-report of ADS use (yes/no). Over a third of the caregivers utilized ADSs for their PWD. Caregivers who utilized ADSs for their familial PWD were 49% less likely (95% confidence interval = 0.32-0.81) to miss a physician's appointment in the past 6 months. More black compared to white caregivers missed appointments regardless of ADS use. Caregivers with increased chronic health conditions were more likely to miss a physician's appointment compared to those with fewer conditions. ADSs' provision of respite enables caregivers the time to address self-care needs by decreasing the likelihood that caregivers miss a physician's appointment. Findings suggest that ADSs may promote positive health behaviors for caregivers and should be expanded as part of comprehensive dementia care for families. Factors associated with missed physician appointments need further examination and intervention to support black caregivers.

Effects of respite care training on respite provider knowledge and confidence, and outcomes for family caregivers receiving respite services

ABSTRACTRespite services are vital in supporting informal caregivers in need of a break from their caregiving duties. A respite training program aimed at developing respite provider competence and improving caregiver well-being was evaluated. Trainees experienced significant growth in their perceived respite knowledge and confidence to deliver respite from pretraining to posttraining. An objective core competency assessment confirmed posttraining knowledge in 10 core areas of respite. Family caregivers provided more favorable ratings on various measures of their well-being while receiving respite from a trained provider compared to before respite began and if respite were to end. Findings suggest that formal training prepares providers to deliver quality respite resulting in improved caregiver outcomes.

Reducing hospital admissions in remote Australia through the establishment of a palliative and chronic disease respite facility

BackgroundThere are limited respite services for palliative care patients and their families in the Northern Territory (NT). The high prevalence of complex chronic diseases, limited access to primary care services, and the poor living situations of many Aboriginal and Torres Strait Islander Australians result in high hospitalisation rates and pressure on tertiary health services. Palliative Care NT identified a need for a flexible, community based, culturally appropriate respite service in Alice Springs. It was of particular interest to assess the impact of the respite service on the extent to which hospital resources were accessed by this population of patients.MethodsRespite service use and hospital use data were collected over two time periods: the 12 months prior to the establishment of the service; and the first 10 months of the operation of the service. The financial implications of the facility were assessed in terms of the National Weighted Activity Unit (NWAU). Of primary interest in this study was the impact of the respite service on admissions to the Emergency Department (ED), to the Wards, and to the Intensive Care Unit (ICU). The amount of ventilator hours consumed was also of interest.ResultsOverall, there was a mean cost saving of $1882.50 per episode for hospital admissions with a reduction in: hospital admissions; mean length of stay; Intensive Care Unit (ICU) hours; and ventilator hours.ConclusionsThe establishment of the respite service has met an important and unmet need in Alice Springs: provision of respite where none has existed before. The service did assist with savings to the health department which could contribute to the cost of the facility over time. Two features of the respite facility that may have contributed to the savings generated were the enhanced coordination of care for patients with complex chronic diseases, as well as improved medication compliance and symptom management.

Respite needs of families receiving palliative care.

The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this. A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned. Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider. There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.

Homeless medical respite in the UK: A needs assessment for South London

A needs assessment was undertaken to provide evidence to support a business case for enhanced homeless medical respite provision in South London. A literature review was undertaken, and existing homeless medical respite models were reviewed. Learning is summarised. A summary of the locality inpatient caseload analysis undertaken is presented, offering a new insight into the varied post-discharge needs of homeless patients. Service provider and service user perspectives are presented.

Beyond Respite: The Role of Adult Day Services in Supporting Dementia Caregivers

Adult day services (ADS) are the leading provider of community-based care for persons with dementia and their caregivers. While the provision of caregiver respite is well-documented, little is known about the provision of other forms of dementia caregiver support. Logistic regression analyses of ADS providers (N = 297) in the MetLife Study indicated that the number of hours of social work support was a significant predictor of case management services, while nonprofit status was a significant predictor of caregiver education and support groups. These findings have implications for practice and policy related to this growing provider of dementia services.

Determining Provider Needs for Respite Training, Results of an Alabama Survey

The Alabama Lifespan Respite Resource Network™ enhances respite services for family caregivers. University evaluators conducted a statewide assessment of respite providers using multiple formats. The purpose was to determine met and unmet needs for respite training among providers serving family caregivers of individuals with disabilities and chronic illnesses. A total of 317 respite providers attempted and 191 completed survey items, revealing respite experience, disabilities and chronic illnesses, areas of difficulty, prior training and confidence, training needs and preferences. Results will be used by a state Network to match content and delivery of training to providers’ needs. Respite providers have important roles to play, sharing information about respite services and providers, advocating for caregiver eligibility to receive services, and participating in training paid and volunteer providers.

Determining caregiver needs for respite, results of an Alabama survey

Background : The Alabama Lifespan Respite Resource Network™ enhances respite services for family caregivers with federal and state support. University evaluators assisted the Network to conduct a first statewide assessment of family caregivers using multiple formats (mail, in-person, online, phone). The purpose was to determine met and unmet needs for respite among families with relatives who have a disability or chronic illness. Results will be used to plan outreach education and match services to caregivers’ needs. Methods : A family caregiver survey was developed after reviewing professional literature and vetted with agency professionals and family caregivers. A total of 49 items were grouped into 4 general categories: service needs, demographics, caregiver expectations, and identification of service providers. State and local agencies serving children and adults with disabilities and chronic illness promoted caregiver participation and disseminated printed and online surveys statewide. Results : Of 884 individuals completing the survey, 54% provide daily care to a female with a disability or chronic illness and 52% of these were parents. Data indicated some family caregiver needs were met; however, 50% could not locate respite care at least once. Nearly 25% did not know how to request respite and worried about finding a qualified caregiver. Although 60% reported less than $40,000 annual income, only 20% received a Medicare waiver. Caregivers’ responses indicated 5 types of expectations for how respite services will help their family. The three most frequent types of expectations were attending to family caregiver’s needs, helping with activities of daily living, and caring for others in my family. The two other expectations were providing financial assistance to pay for respite; and caregiver continuing education, providing therapies or medical treatment. Conclusions : Respite services enable families to effectively care for relatives with disabilities and chronic conditions in communities. A majority of respondents to the Alabama survey who received respite praised its benefits and would feel stressed if respite was unavailable. Unfortunately, nearly half felt the most recent respite was insufficient to meet their needs, straining their caregiving capacity. Nurses and nurse educators have important roles to play, sharing information about respite services and providers with their patients, advocating for services to be provided to family caregivers, and participating in training paid and volunteer respite providers. Normal 0 false false false EN-US X-NONE X-NONE

P127 Hospice respite: Moving forwards not backwards

Anecdotal evidence suggested that respite provision at an independent hospice was dominated by patients with neurological or non cancer diagnoses and that a small number of patients had a disproportionately...

The provision of health and social care services for older people by respite providers

Respite services have been established to support family carers by providing a break from the responsibilities of caregiving. However the literature and anecdotal evidence suggests that respite services offer carers much more than just providing a period of rest. This study was initiated to identify and describe the health and social care services that are offered to family carers and care-recipients by respite services in South Australia. The findings show that respite providers offer a service to both the family carer and care-recipient. Both groups are offered socialisation and engagement opportunities, and care-recipients have access to a diverse range of health care services. The description of respite that emerges from this study is that of a complex service offering much more than just a period of rest from caregiving duties.

The provision of health and social care services for older people by respite providers

The provision of health and social care services for older people by respite providers

Strengthening kinship families: scoping the provision of respite care in Australia

AbstractKinship care is the fastest growing form of out‐of‐home care in Australia, as it is in many other countries. The Victorian Government's response has been to establish 18 programmes across the state to provide support to kinship families. The scoping project described here, based on interviews with key programme staff, explores the experiences of the new programmes in providing support, specifically respite care, to kinship families. It has produced a picture, based on qualitative and quantitative data, of how respite care is understood, the perceived respite needs of kinship families, how services are organized and provided, identified barriers to families accessing support, the effect of respite provision and what constitutes optimal practice. The findings establish a basis for a best practice model of service provision for this increasingly significant family type.