Dataset Information

Good-quality social care for people with Parkinson's disease: a qualitative study.

ABSTRACT: The study examines the meaning of good-quality social care for people with Parkinson's disease and their carers. It identifies, from their perspective, the impact of good-quality social care on health and well-being.Qualitative case study methodology, interview and framework analysis techniques were used.community locations in the north and midlands of England.Data were collected from 43 participants including individual interviews with people with Parkinson's disease (n=4), formal and informal social care providers (n=13), 2 focus groups, 1 with people with Parkinson's disease and their carers (n=17), and 1 with professionals (n=8), plus a telephone interview with a former commissioner.Good-quality social care, delivered in a timely fashion, was reported to have a positive impact on health. Furthermore, there is an indication that good-quality social care can prevent untoward events, such as infections, symptom deterioration and deterioration in mental health. The concept of the 'Impact Gap' developed from the findings, illustrates how the costs of care may be reduced by delivering good-quality social care. Control, choice and maintaining independence emerged as indicators of good-quality social care, irrespective of clinical condition. Participants identified characteristics indicative of good-quality social care specific to Parkinson's disease, including understanding Parkinson's disease, appropriate administration of medication, timing of care and reassessment. 'Parkinson's aware' social care was seen to generate psychological, physical and social benefits that were inter-related.The findings indicate how maximising quality in social care delivery for people with Parkinson's disease can impact on health and well-being. Long-term or short-term benefits may result in prevented events and reductions in health and social care resource. Health professionals can be instrumental in early detection of and signposting to social care.

SUBMITTER: Tod AM

PROVIDER: S-EPMC4762087 | biostudies-other | 2016 Feb

REPOSITORIES: biostudies-other

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Good-quality social care for people with Parkinson's disease: a qualitative study.

Tod Angela Mary AM Kennedy Fiona F Stocks Amanda-Jayne AJ McDonnell Ann A Ramaswamy Bhanu B Wood Brendan B Whitfield Malcolm M

BMJ open 20160216 2

<h4>Objectives</h4>The study examines the meaning of good-quality social care for people with Parkinson's disease and their carers. It identifies, from their perspective, the impact of good-quality social care on health and well-being.<h4>Design</h4>Qualitative case study methodology, interview and framework analysis techniques were used.<h4>Setting</h4>community locations in the north and midlands of England.<h4>Participants</h4>Data were collected from 43 participants including individual inte ...[more]

PMID: 26883233

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Project description:BackgroundPeople who inject drugs (PWID) in Europe are at an increased risk of HIV/AIDS, chronic viral hepatitis B (HBV) and C (HCV), and tuberculosis (TB). We aimed to complement the evidence base on interventions optimising their care cascade with evidence from models of good practice (MoGPs) implemented in the EU/EEA and countries from the Eastern European region.MethodsA model of good practice (MoGP) was defined as (a package of) interventions with proven effectiveness in certain settings that are likely to be replicable and sustainable in other settings or countries. Fifteen MoGPs, identified by the European Centre for Disease Prevention and Control (ECDC) and the European Monitoring Centre on Drugs and Drug Addiction (EMCDDA) following a call launched in 2020, have been analysed. For the 15 MoGPs, a qualitative content analysis was conducted of (i) intervention characteristics and (ii) enabling factors. Information was extracted and summarised for community-based testing, linkage to care and adherence to treatment.ResultsMoGPs emerged from projects implemented in Belarus, Norway, Portugal, the Republic of Moldova, Spain, and the UK alongside the multi-country HepCare project (Ireland, Romania, Spain, the UK) targeting either HCV (6/15) or HIV/AIDS (4/15), alone or combined with HBV, and/or TB (5/15). All MoGPs used packages of interventions, with decentralisation of services (15/15), cooperation among service providers (14/15), integrated services (10/15), peer interventions (12/15), and case management (4/15) reported across all stages of the care cascade. The synthesis of enablers shows that when replicating interventions in other settings, consideration should be given to national (legal) frameworks, characteristics of and proximity between healthcare and service providers, and establishing relations of trust with PWID.ConclusionTo improve the cascade of care for PWID in European settings, care structures and pathways should be simplified, based on cooperation and multidisciplinary. MoGPs can provide implementation-based evidence on interventions alongside evidence from peer-reviewed literature to optimise the care cascade among PWID.

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.

Dataset Information

Good-quality social care for people with Parkinson's disease: a qualitative study.

Publications

Good-quality social care for people with Parkinson's disease: a qualitative study.

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