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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.

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Project description:BackgroundPeople with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature.AimTo explore experiences of PD service access for people living with PD, using a qualitative approach.MethodsPurposive maximum variation sampling was used. Semi-structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency.ResultsThe findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two-tiered and under-resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland.ConclusionsThese findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under-provision and under-resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology-enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed.Patient or public contributionThe design and conduct of this study were supported by an expert advisory group (EAG) of 10 co-researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper.

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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