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.

Profiles of French young carers taking part in an arts and respite care program.

Young carers (YCs) are children and adolescents who provide meaningful, regular support to a relative with a health problem. In France, only one programme exists to support them: the arts and respite care programme of the national association JADE. The aim of this study is to describe the profiles of YCs who had participated in this programme and to evaluate their expectations, opinions, and the evolution of their quality of life over the course of the programme. All YCs enrolled in the programme between 2017 and 2020 were invited to participate in the study. Upon arrival, the youths completed a self-report questionnaire addressing their sociodemographic and family situations, their caregiving activities, their quality of life, and their expectations for the programme. At the end of each week, a questionnaire evaluating their opinion of the programme and their quality of life was completed. A hundred and seventeen children participated (average age: 12; 71.8% girls). Most YCs provided support to a parent or sibling with a chronic somatic disease. The support mainly concerned doing domestic tasks and providing emotional support for the relative and was significantly higher among adolescents. Their expectations were mainly about getting respite and meeting other young people. Their levels of satisfaction were high and aligned with their expectations. Their quality of life increased significantly. French YCs in this programme had characteristics comparable to those observed internationally. The results underline the importance of respite and the benefits such a programme can bring to YCs.

The impact of formal and informal support on emotional stress among non-co-resident caregivers of persons with dementia.

OBJECTIVES: The purpose of this study was to examine the prevalence of formal and informal support between non-co-resident and co-resident family caregivers of persons with dementia and to investigate the impact of receiving formal or informal assistance on family caregivers' residential status and their perceived emotional stress. METHOD: We used secondary data from the 2018 National Survey of Older American Act conducted by the Administration for Community Living. We selected 751 primary family caregivers of persons with dementia and conducted regression analyses to explore our research questions. RESULTS: Non-co-resident caregivers of persons with dementia were younger, racially and ethnically diverse, employed, and had higher income than co-resident caregivers. They were less likely to utilize formal support, such as caregiver training or education (p = .005) and respite care (p = .019) but more likely to rely on informal support in their social networks (p = .002), compared to co-resident caregivers. Non-co-resident caregivers who had better informal support systems showed less emotional stress than co-resident caregivers (p = .024). CONCLUSION: Findings from our study suggest the importance of engaging informal networks to alleviate emotional stress of non-co-resident caregivers of persons with dementia. Furthermore, it is critical to help them utilize adequate caregiver training and education as well as respite care before their loved ones experience dramatic functional and health declines.

Crucial Role of Respite Care in Supporting Informal Caregivers: A Challenge for the Care of Older Adults in the Middle East and North Africa.

With the lack of respite care, caregivers will often suffer from physical, mental, and financial hardships. In the Middle East and North African countries, religion and cultural considerations may pull in opposite directions as a vast majority of families in the region care for their loved ones at home. Moreover, the sense of responsibility and obligations toward caring for an older family member also influences caregivers' decision-making, even though such considerations may deprive them of even a short vacation or break. It is important for policymakers and stakeholders, in close participation with families and older adults receiving care, to take into account how various factors related to social, cultural, and religious matters affect quality of care and the well-being of care recipients and caregivers. Official policies could have an essential role in opening new avenues for temporary respite care, but authorities should be aware of the importance of cultural and religious principles while setting up such policies. Therefore, policymakers should engage with the relevant organizations, such as municipalities, nongovernmental organizations, charities, and religious institutions, to help the health system in establishing respite care facilities. In this article, we discuss a number of key issues and provide suggestions as to how this goal might be achieved. The availability of respite services could have a positive influence on the physical and mental health of both older adults in need of care and informal caregivers. In conclusion, those receiving care, caregivers, and the public health-care system will gain from the development of a range of respite care services.

"It has been fun. Super-duper fantastic": Findings from a Danish respite programme to support young carers.

Awareness of young carers' experiences and needs is low on governmental and societal levels in Denmark. This article presents findings from the first evaluation of a Danish respite programme, the Buddy Programme, which aims to provide support to young carers aged 5-15 years who experience serious, chronic or mental health problems and/or death of a parent or sibling. Over a four-six month period, volunteer students from University College Copenhagen offer young carers the opportunity of respite through participating in ordinary activities such as play and sports. In 2017-2018, based on a child-centred approach, we conducted a qualitative study with interviews focusing on how the Buddy programme affected the children. The interviews took place at programme start, halfway through, and after completion with 22 children and 21 parents, as well as single interviews with 20 Buddies assigned to families after completion. Three main themes were identified: (1) the Buddy programme as an activity, (2) how the Buddy Programme affected the children and (3) ending the Buddy programme and wanting to continue the friendship. Our findings emphasise the importance of fun and cosy activities that provide children with respite from the serious concerns that otherwise fill the lives of young carers. Being with a Buddy created a free space, allowing children to play undisturbed and to temporarily keep concerns and a guilty conscience at a distance. By offering friendship, Buddies provided opportunities for young carers to feel special, be seen, acknowledged and taken seriously as a child with valid and specific needs and interests. Our findings may help increase awareness of the needs and interests of young carers on governmental and societal levels.

The decision-making process in families of terminal ICU patients / O processo de tomada de decisão da família na terminalidade em UTI / Proceso de toma de decisiones de la familia al término de la vida en la UCI

The objective of this research is to investigate family members' perceptions as to the end-of-life decision-making process in an ICU. The authors conducted a qualitative descriptive study in which they interviewed six family members of critically ill patients admitted to the ICU of a private hospital. Five categories of analysis emerged from the examination of the material. This study will discuss two of those categories: the decision-making process and the relationship with the medical staff. The results indicate that family members were satisfied with communication with the medical staff, an important aspect for the decision-making process. Within this context, the shared model, prioritization of palliative care and identification of futile treatments prevailed, aimed at ensuring the patient's comfort and dignity at the end of life. The results also reveal the need for integration of palliative care in ICUs, particularly in end-of-life situations. (AU)

O presente estudo tem como objetivo investigar a percepção dos familiares acerca do processo de tomada de decisão na terminalidade em UTI. Realizou-se uma pesquisa descritiva de cunho qualitativo, na qual foram entrevistados seis familiares de pacientes gravemente enfermos, internados na UTI de um hospital privado. Do estudo do material emergiram cinco categorias de análise. Neste trabalho serão discutidas duas categorias: processo de tomada de decisão e relação com a equipe médica. Os resultados indicam que os familiares se mostraram satisfeitos com a comunicação com os membros da equipe de saúde, aspecto importante para o processo de tomada de decisão. Neste contexto prevaleceram o modelo compartilhado, a priorização de medidas paliativas e a identificação de medidas fúteis, a fim de garantir o conforto e a dignidade no processo de morrer do paciente. Evidenciou-se a busca de integração dos cuidados paliativos em UTI, principalmente em situações finais de vida. (AU)

El presente estudio tiene como objetivo investigar la percepción de los familiares sobre el proceso de toma de decisiones en el estado terminal de vida en la UCI. Se realizó una investigación descriptiva de carácter cualitativo, en la cual fueron entrevistados seis familiares de pacientes gravemente enfermos, internados en la UCI de un hospital privado. Del estudio del material surgieron cinco categorías de análisis. En este trabajo serán discutidas dos categorías: proceso de toma de decisiones y relación con el equipo médico. Los resultados indican que los familiares se mostraron satisfechos con la comunicación con los miembros del equipo de salud, aspecto importante para el proceso de toma de decisiones. En este contexto prevalecieron el modelo compartido, la priorización de medidas paliativas y la identificación de medidas inútiles, con el fin de garantizar comodidad y dignidad en el proceso de muerte del paciente. Se evidenció la búsqueda de integración de los cuidados paliativos en la UCI, principalmente en situaciones finales de vida. (AU)

Exploring employment as a space of respite and resistance for family caregivers.

This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers' ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non-temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance.

DESKK Study - Development and testing of a dementia-specific respite care concept with a mobility and counselling programme: study protocol.

INTRODUCTION: Specific mobility programmes can delay functional decline in people with dementia (PwD). Family caregivers (FCs) can be relieved from care-related burden by counselling services. Respite care is a short-term inpatient care service (1-8 weeks of stay). Respite care centres (RCCs) can function as support structures for dementia care arrangements through caring-based mobility training of PwD and counselling sessions for their FCs. However, no systematic mobility or counselling programmes exist in this setting in Germany or the rest of the world. The aim of the development and testing of a dementia-specific respite care concept (DESKK) study is the development and testing of an evidence-based mobility and counselling programme for PwD and their FCs that is suitable for the respite care setting. METHODS AND ANALYSIS: A pilot-based, quasi-experimental evaluation study will be conducted in a specialised RCC for PwD. To evaluate the acceptance and usability of the development and testing of a DESKK concept, qualitative data will be collected from the RCC staff and FCs via semistandardised interviews. Quantitative data will be collected using instruments to assess effect tendencies of the concept related to mobility (PwD) and burden (FCs). Furthermore, a mixed-methods triangulation approach will be conducted. ETHICS AND DISSEMINATION: The protocol, informed consent and accompanying material given to patients were submitted by the investigator to the Ethical Review Committee of the German Society of Nursing Science. The project was examined and finally approved on 31 January 2017 (Number: 16-27). Prior to obtaining written consent for study participation, information must be given to all of the study participants in verbal and written form. The results of the study will be presented at national and international conferences and published in peer-reviewed journals. After the concept is finalised, a practice-friendly manual will be developed in which implementation components are described for other RCCs. TRIAL REGISTRATION NUMBER: NCT03578861.

Research roundup.

Synopses of a selection of recently published research articles of relevance to palliative care.

Coming 'Home': Place bonding for parents accessing or considering hospice based respite.

Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming 'Home'. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could 'come home'.

Carer preferences for home support services in later stage dementia.

OBJECTIVES: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia. METHOD: Preferences from 100 carers, recruited through carers' organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'. RESULTS: The most preferred attributes were 'respite care, available regularly to fit your needs' (coefficient 1.29, p = < 0.001) and 'home care provided regularly for as long as needed' (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall. CONCLUSIONS: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers' preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.

Respite in Dementia: An Evolutionary Concept Analysis.

AIM: There is a lack of conceptual clarity around 'respite' as it relates to people with dementia and their carers. This study provides clarification on the use and meaning of the term and considers the concept in relation to the dominant care paradigm in dementia, i.e. person-centred care. METHODS: Rodgers' (1989) evolutionary framework was employed. A systematic search was conducted on the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia'. Papers with primary qualitative data and literature reviews were included. This search was supplemented with snowballing techniques (back/forward searching, generic search engines). Data were analysed thematically, through an iterative process of constant comparison. RESULTS: Respite is understood both as a service that provides a physical break for the carer and as a psychological outcome, i.e. a mental break for the carer, which can be facilitated by formal services, under certain conditions. The conceptual model outlines how client factors (dyadic relations, recognising/accepting need, carer psychosocial issues, restorative occupation, and stigma) and service factors (model/characteristics, care quality, staff expertise, meaningful occupation for people with dementia and communication and support), interact to influence a respite outcome. The key antecedent for a positive respite experience is that the carer perceives that mutual benefit is garnered from service use. CONCLUSION: The term respite can be interpreted as both a service and an outcome. However, it is clear that 'respite', as currently understood, acknowledges the relational experience of the carer only; it is, therefore, potentially damaging to the planning and delivery of person-centred dementia care. We suggest 'restorative care' as a potential alternative nomenclature to respite care, thereby highlighting the importance of providing mutual, personalised health and social care services that serve to enhance care relationships rather than diminish them.

Healthcare professionals' perspective on how to promote older couples' participation in everyday life when using respite care.

AIMS: The aim is to describe healthcare professionals' perspectives on how they understand and promote older couples' participation in everyday life when using residential respite care. DESIGN AND METHODS: Eighteen healthcare professionals with varying degrees of competence and from one residential respite care facility participated in four focus group interviews. Data were analysed through qualitative latent content analysis. FINDINGS: The findings revealed a broad, multifaceted view of participation and ways in which participation in everyday life is promoted by these professionals. Trustworthy relationships between professionals, spousal caregivers and clients were implicated. Promoting participation also necessitated that clients have access to meaningful activities. In addition, participation entailed an environment that supported various needs. CONCLUSION: Promoting participation for older couples that are using respite care involves multifaceted perspectives that consider social-relational aspects including both the client and their spouse. Furthermore, attention is needed to the meaning a change of context between home and the respite care facility has on relationships, environments and activities in everyday life. Such an approach could benefit the couples' shared everyday life situation and in a wider perspective, also influence their health and well-being when ageing in place together.

The Going to Stay at Home program: combining dementia caregiver training and residential respite care.

ABSTRACTBackground:Caring for persons with dementia is stressful for family caregivers. Caregiver training programs and respite care can reduce this stress and help maintain persons with dementia living longer in the community. We evaluated a program that combines caregiver training with a residential respite stay. METHODS: In total, 90 dyads of persons with dementia and their caregivers, in groups of 3-6 dyads, volunteered to participate in a five-day residential training program and were followed-up 6 and 12 months later. The primary outcome was caregiver depression; secondary outcomes were measures of caregiver burden, unmet needs, person with dementia behavioral symptoms, and the quality of life and function. RESULTS: Caregiver depression and burden were unchanged, despite decreasing function in persons with dementia. Caregivers' unmet needs and behavioral symptoms in persons with dementia decreased significantly. Compared to a group of persons with dementia admitted for routine residential respite care, there was a marked reduction in permanent placement over 12 months. CONCLUSIONS: The Going to Stay at Home Program is a feasible and practicable model with benefits for caregivers and persons with dementia. It may lead to delay in institutionalization and may be applicable to other chronic conditions.

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

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

The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives.

Family members with a relative with dementia often experience what has been called the "unexpected career of caregiver" and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming.

Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

BACKGROUND: The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. OBJECTIVES: The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. METHODS: The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. FINDINGS: Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

Experiences with unregulated respite care among family caregivers of children dependent on respiratory technologies.

Increasingly, children with respiratory conditions who are dependent on medical technology (e.g. ventilators and tracheostomies) are cared for at home by family caregivers who are at risk for significant health, financial and social burdens. In many jurisdictions, access to quality respite is varied and often the availability of regulated (nursing) providers is insufficient. Rather than go without, some families have secured alternative and unregulated providers to supplement formal home care systems. The purpose of this study was to explore the experiences of family caregivers of children dependent on respiratory technologies who have used unregulated providers for in-home respite care. Through an interpretative description approach, data was gathered from 20 semi-structured parent interviews and analysed using constant comparative analysis. Four themes emerged from the data, which were conceptualized as both opportunities and tensions that parents experienced with both unregulated and regulated home care providers: finding the right fit for the child and family; trusting the provider is everything; using unregulated providers offers unique advantages; and accepting that regulated and unregulated care present challenges. Findings signal that unregulated providers play a pivotal role in supporting parents of children who are dependent on respiratory technologies. Implications for practice, policy and future research initiatives are discussed.

Key stakeholders' experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review.

BACKGROUND: Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders' experiences of respite services for people with dementia, with a view to informing respite service development. METHODS: A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia', following PRISMA guidelines. Noblit and Hare's approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a 'line-of-argument' was developed. RESULTS: In total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 'service providers', 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad's needs and preferences. CONCLUSION: Respite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward. TRIAL REGISTRATION: PROSPERO Registration Number: CRD42016050191 .