BackgroundRespite 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.MethodsA 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.ResultsIn 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.ConclusionRespite 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 registrationPROSPERO Registration Number: CRD42016050191.Electronic supplementary materialThe online version of this article (10.1186/s12877-017-0676-0) contains supplementary material, which is available to authorized users.
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.
Respite services have traditionally been viewed as services for carers mainly. Perhaps as a result, the perspectives of people with dementia have been largely ignored. In this study, we consider these perspectives in relation to day and respite services, and contextualise them in light of Kitwood's prediction that person-centred care would be adopted only superficially by such services. Convenience sampling was employed and semi-structured interviews were conducted with six community-dwelling people with dementia. A thematic analysis was conducted and four themes were identified: ‘acceptability of service characteristics’, ‘meaningful engagement’, ‘personhood’ and ‘narrative citizenship’. The findings suggest that day services were more acceptable than residential respite, though some people would prefer home-based models, if available. ‘Meaningful’ engagement must be individually defined; however purposeful and reciprocal activity was commonly invoked as meaningful. ‘Personhood’ and ‘narrative citizenship’ were quintessential markers of quality care; while some people experienced personhood being bestowed upon them, others reported distinct instances of malignant social psychology, discrimination and stigma. In conclusion, an implementation gap may still persist regarding person-centred care in some respite services, based on the perspectives of people with dementia. Delivering the vision for care outlined here would require greater flexibility in service provision, more resources and more one-on-one staff–client time. The fundamental shift in thinking required by some staff relies on us supporting them to develop a greater self- and shared cultural-awareness around dementia.
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