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

ABSTRACT: 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 .

SUBMITTER: Shea EO

PROVIDER: S-EPMC5719558 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

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

Shea Emma O' EO Timmons Suzanne S Shea Eamon O' EO Fox Siobhan S Irving Kate K

BMC geriatrics 20171207 1

<h4>Background</h4>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.<h4>Methods</h4>A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databa ...[more]

PMID: 29216836

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Project description:BackgroundPeople with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention.MethodsThe views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256?h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups.ResultsThrough the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death.ConclusionsThis unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.

Project description:BackgroundDespite aspects of the SAFE strategy for reducing trachoma in Tanzania have been somewhat successful, the disease still persists in marginalised communities even with repeated trachoma control interventions. This study aims to understand the facilitators and barriers associated with implementing trachoma control programmes in these communities, from the perspective of non-governmental organisations (NGOs).MethodsParticipants were the representatives of NGOs who had knowledge and experience in the implementation of trachoma control programmes. Data was collected using in-depth, semi-structured interviews guided by a topic guide, which was updated after each interview using a constant comparative method. Interviews were audio-recorded and then transcribed verbatim. Thematic analysis was done inductively. Codes were generated from the transcripts and then clustered into themes.FindingsThe context within marginalised communities often acted as a perceived barrier to successful implementation of control programmes. This included poor environmental cleanliness, lack of trust, poor disease knowledge and traditional lifestyles. Community values could either be a facilitator or a barrier, depending on the scenario. The anatomical location of the disease and the poor understanding of the disease progression also served as barriers. Considerations affecting decision-making among NGO's include financial feasibility, community needs and whether the quality of the intervention could be improved. NGOs felt that the collaboration and the opportunity to learn from other organisations were beneficial aspects of having different actors. However, this also resulted in variability in the effectiveness of interventions between districts.ConclusionNGOs should focus on behaviour change and health education that is tailored to marginalised communities and seek innovative ways to implement trachoma intervention programmes whilst being minimally intrusive to the traditional way of life. Partners should also implement ways to ensure high quality programmes are being provided, by increasing staff accountability and compensating volunteers fairly.

Project description:IntroductionPeople who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency services and is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment.MethodsWe used a two-stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third-sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results.ResultsPeople said they make frequent calls to emergency ambulance services as a last resort when they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers.ConclusionPeople who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users' motivations and requirements to inform design and delivery of accessible and effective services.Patient or public contributionPeople with relevant experience were involved in developing, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee.

Project description:ObjectivesPatient medicines helpline services (PMHS) are available from some National Health Service (NHS) Trusts in the UK to provide medicines information to hospital patients and carers. To date, studies of PMHS have examined the views of service users via satisfaction surveys. This study used qualitative methods to explore service users' experiences of using a PMHS, including perceived benefits and areas for improvement.DesignQualitative, using semi-structured interviews.SettingThis study was conducted across seven NHS Trusts in England.ParticipantsForty users of PMHS were individually interviewed over the telephone. Interviews were audio-recorded, transcribed verbatim and analysed using Braun and Clarke's inductive reflexive thematic analysis. Ethical approval was obtained before study commencement.ResultsParticipants predominantly called a PMHS for themselves (82%; carers: 18%). Two main themes were generated. Theme 1: timeliness-PMHS provide support during the uncertain transition of care period from hospital to home, when patients and carers often feel vulnerable because support is less available. PMHS met service users' needs for timely and easily accessible support, and quick resolution of their issues. PMHS could be improved with staffing beyond typical work week hours, and by having staff available to answer calls instead of using an answerphone. Theme 2: PMHS are best-placed to help-PMHS were perceived as best-placed to answer enquiries that arose from hospital care. Service users felt reassured from speaking to pharmacy professionals, and PMHS were perceived as the optimal service in terms of knowledge and expertise regarding medicines-related questions. However, several participants were initially unaware that their PMHS existed.ConclusionsPMHS are perceived to be a valuable means of accessing timely medicines-related support when patients and carers may be feeling particularly vulnerable. However, their availability and promotion could be improved. We recommend that providers of PMHS consider whether this is achievable, in order to better meet the needs of service users.

Project description:ObjectiveProviding services to rural dwelling minority cultural groups with serious chronic disease is challenging due to access to care and cultural differences. This study aimed to describe service providers' perspectives on health services delivery for Aboriginal people receiving haemodialysis for end-stage kidney disease in rural Australia.DesignSemistructured interviews, thematic analysisSettingA health district in rural New South Wales, AustraliaParticipantsUsing purposive sampling, 29 renal and allied service providers were recruited, including nephrologists, renal nurses, community nurses, Aboriginal health workers, social workers and managers. Six were Aboriginal and 23 non-Aboriginal.ResultsImproving cultural understanding within the healthcare system was central to five themes identified: rigidity of service design (outreach, inevitable home treatment failures, pressure of system overload, limited efficacy of cultural awareness training and conflicting priorities in acute care); responding to social complexities (respecting but challenged by family obligations, assumptions about socioeconomic status and individualised care); promoting empowerment, trust and rapport (bridging gaps in cultural understanding, acknowledging the relationship between land, people and environment, and being time poor); distress at late diagnosis (lost opportunities and prioritise prevention); and contending with discrimination and racism (inherent judgement of lifestyle choices, inadequate cultural awareness, pervasive multilevel institutionalised racism and managing patient distrust).ConclusionsService providers believe current services are not designed to address cultural needs and Aboriginality, and that caring for Aboriginal patients receiving haemodialysis should be family focused and culturally safer. An Aboriginal-specific predialysis pathway, building staff cultural awareness and enhancing cultural safety within hospitals are the measures recommended. Increasing patient support for home haemodialysis may improve health and the quality of care outcomes.

Dataset Information

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

Publications

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

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