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1.
Clin Cardiol ; 45(2): 231-238, 2022 Feb.
Article in English | MEDLINE | ID: mdl-35132645

ABSTRACT

BACKGROUND: Treatment decisions in myocardial infarction (MI) are currently stratified by ST elevation (ST-elevation myocardial infarction [STEMI]) or lack of ST elevation (non-ST elevation myocardial infarction [NSTEMI]) on the electrocardiogram. This arose from the assumption that ST elevation indicated acute coronary artery occlusion (OMI). However, one-quarter of all NSTEMI cases are an OMI, and have a higher mortality. The purpose of this study was to identify features that could help identify OMI. METHODS: Prospectively collected data from patients undergoing percutaneous coronary intervention (PCI) was analyzed. Data included presentation characteristics, comorbidities, treatments, and outcomes. Latent class analysis was undertaken, to determine patterns of presentation and history associated with OMI. RESULTS: A total of 1412 patients underwent PCI for acute MI, and 263 were diagnosed as OMI. Compared to nonocclusive MI, OMI patients are more likely to have fewer comorbidities but no difference in cerebrovascular disease and increased acute mortality (4.2% vs. 1.1%; p < .001). Of OMI, 29.5% had delays to their treatment such as immediate reperfusion therapy. With latent class analysis, while clusters of similar patients are observed in the data set, the data available did not usefully identify patients with OMI compared to non-OMI. CONCLUSION: Features between OMI and STEMI are broadly very similar. However, there was no difference in age and risk of cerebrovascular disease in the OMI/non-OMI group. There are no reliable characteristics therefore for identifying OMI versus non-OMI. Delays to treatment also suggest that OMI patients are still missing out on optimal treatment. An alternative strategy is required to improve the identification of OMI patients.


Subject(s)
Myocardial Infarction , Non-ST Elevated Myocardial Infarction , Percutaneous Coronary Intervention , ST Elevation Myocardial Infarction , Humans , Latent Class Analysis , Myocardial Infarction/diagnosis , Myocardial Infarction/therapy , Non-ST Elevated Myocardial Infarction/diagnosis , Percutaneous Coronary Intervention/adverse effects , Registries , ST Elevation Myocardial Infarction/diagnostic imaging , ST Elevation Myocardial Infarction/surgery , Treatment Outcome
2.
BJGP Open ; 5(4)2021 Aug.
Article in English | MEDLINE | ID: mdl-33910915

ABSTRACT

BACKGROUND: People with diabetes often have difficulty maintaining optimal blood glucose levels, risking progressive complications that can lead to unscheduled care. Unscheduled care can include attending emergency departments, ambulance callouts, out-of-hours care, and non-elective hospital admissions. A large proportion of non-elective hospital admissions involve people with diabetes, with significant health and economic burden. AIM: To identify precipitating factors influencing diabetes-related unscheduled hospital admissions, exploring potential preventive strategies to reduce admissions. DESIGN & SETTING: Thirty-six people with type 1 (n = 11) or type 2 (n = 25) diabetes were interviewed. They were admitted to hospital for unscheduled diabetes-related care across three hospitals in Scotland, Northern Ireland, and the Republic of Ireland. Participants were admitted for peripheral limb complications (n = 17), hypoglycaemia (n = 5), hyperglycaemia (n = 6), or for comorbidities presenting with erratic blood glucose levels (n = 8). METHOD: Factors precipitating admissions were examined using framework analysis. RESULTS: Three aspects of care influenced unscheduled admissions: perceived inadequate knowledge of diabetes complications; restricted provision of care; and complexities in engagement with self-care and help-seeking. Limited specialist professional knowledge of diabetes by staff in primary and community care, alongside inadequate patient self-management knowledge, led to inappropriate treatment and significant delays. This was compounded by restricted provision of care, characterised by poor access to services - in time and proximity - and poor continuity of care. Complexities in patient engagement, help-seeking, and illness beliefs further complicated the progression to unscheduled admissions. CONCLUSION: Dedicated investment in primary care is needed to enhance provision of and access to services. There should be increased promotion and earlier diabetes specialist team involvement, alongside training and use of technology and telemedicine, to enhance existing care.

3.
Dementia (London) ; 20(7): 2542-2557, 2021 Oct.
Article in English | MEDLINE | ID: mdl-33765848

ABSTRACT

A diagnosis of dementia in midlife can be challenging, causing losses or changes in a person's identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users' perspectives. We employed a narrative model of identity to examine why people with dementia use Twitter and what challenges they face. Interviews were conducted with 11 younger people with dementia and analysed thematically. Participants used Twitter to counter a loss of identity through community membership and by regaining a sense of purpose. They sought to redefine dementia identities by challenging stigma and campaigning for social change. The character limit of tweets facilitated narrative through which participants preserved their identities. These findings suggest that Twitter could be an important source of post-diagnostic support for people with young-onset dementia. However, there are some risks as Twitter was sometimes a hostile environment for individuals who did not present in a 'typical' manner, or faced technical difficulties because of their symptoms. In the future, platform developers could work with people with dementia to make Twitter more accessible for this group.


Subject(s)
Dementia , Social Media , Humans , Narration
4.
Crit Pathw Cardiol ; 19(3): 119-125, 2020 09.
Article in English | MEDLINE | ID: mdl-32209826

ABSTRACT

OBJECTIVES: Timely prehospital diagnosis and treatment of acute coronary syndrome (ACS) are required to achieve optimal outcomes. Clinical decision support systems (CDSS) are platforms designed to integrate multiple data and can aid with management decisions in the prehospital environment. The review aim was to describe the accuracy of CDSS and individual components in the prehospital ACS management. METHODS: This systematic review examined the current literature regarding the accuracy of CDSS for ACS in the prehospital setting, the influence of computer-aided decision-making and of 4 components: electrocardiogram, biomarkers, patient history, and examination findings. The impact of these components on sensitivity, specificity, and positive and negative predictive values was assessed. RESULTS: A total of 11,439 articles were identified from a search of databases, of which 199 were screened against the eligibility criteria. Eight studies were found to meet the eligibility and quality criteria. There was marked heterogeneity between studies which precluded formal meta-analysis. However, individual components analysis found that patient history led to significant improvement in the sensitivity and negative predictive values. CDSS which incorporated all 4 components tended to show higher sensitivities and negative predictive values. CDSS incorporating computer-aided electrocardiogram diagnosis showed higher specificities and positive predictive values. CONCLUSIONS: Although heterogeneity precluded meta-analysis, this review emphasizes the potential of ACS CDSS in prehospital environments that incorporate patient history in addition to integration of multiple components. The higher sensitivity of certain components, along with higher specificity of computer-aided decision-making, highlights the opportunity for developing an integrated algorithm with computer-aided decision support.


Subject(s)
Acute Coronary Syndrome/diagnosis , Algorithms , Decision Support Systems, Clinical/organization & administration , Electrocardiography , Emergency Medical Services/methods , Humans , Predictive Value of Tests
6.
BMC Fam Pract ; 19(1): 17, 2018 01 15.
Article in English | MEDLINE | ID: mdl-29334913

ABSTRACT

BACKGROUND: Many people now take multiple medications on a long-term basis to manage health conditions. Optimising the benefit of such polypharmacy requires tailoring of medicines use to the needs and circumstances of individuals. However, professionals report barriers to achieving this in practice. In this study, we examined health professionals' perceptions of enablers and barriers to delivering individually tailored prescribing. METHODS: Normalisation Process Theory (NPT) informed an on-line survey of health professionals' views of enablers and barriers to implementation of Individually Tailored Prescribing (ITP) of medicines. Links to the survey were sent out through known professional networks using a convenience/snowball sampling approach. Survey questions sought to identify perceptions of supports/barriers for ITP within the four domains of work described by NPT: sense making, engagement, action and monitoring. Analysis followed the framework approach developed in our previous work. RESULTS: Four hundred and nineteen responses were included in the final analysis (67.3% female, 32.7% male; 52.7% nurse prescribers, 19.8% pharmacists and 21.8% GPs). Almost half (44.9%) were experienced practitioners (16+ years in practice); around one third reported already routinely offering ITP to their patients. GPs were the group least likely to recognise this as consistent usual practice. Findings revealed general support for the principles of ITP but significant variation and inconsistency in understanding and implementation in practice. Our findings reveal four key implications for practice: the need to raise understanding of ITP as a legitimate part of professional practice; to prioritise the work of ITP within the range of individual professional activity; to improve the consistency of training and support for interpretive practice; and to review the impact of formal and informal monitoring processes on practice. CONCLUSION: The findings will inform the ongoing development of our new complex intervention (PRIME Prescribing) to support the individual tailoring of medicines needed to address problematic polypharmacy.


Subject(s)
Drug Prescriptions , Health Personnel , Polypharmacy , Precision Medicine , Attitude of Health Personnel , Cross-Sectional Studies , Female , General Practitioners , Humans , Male , Nurses , Pharmacists , Surveys and Questionnaires , United Kingdom
7.
Prim Health Care Res Dev ; 18(1): 24-34, 2017 01.
Article in English | MEDLINE | ID: mdl-27306579

ABSTRACT

Aim To examine how patient perspectives and person-centred care values have been represented in documents on medicines optimisation policy in England. BACKGROUND: There has been growing support in England for a policy of medicines optimisation as a response to the rise of problematic polypharmacy. Conceptually, medicines optimisation differs from the medicines management model of prescribing in being based around the patient rather than processes and systems. This critical examination of current official and independent policy documents questions how central the patient is in them and whether relevant evidence has been utilised in their development. METHODS: A documentary analysis of reports on medicines optimisation published by the Royal Pharmaceutical Society (RPS), The King's Fund and National Institute for Health and Social Care Excellence since 2013. The analysis draws on a non-systematic review of research on patient experiences of using medicines. Findings The reports varied in their inclusion of patient perspectives and person-centred care values, and in the extent to which they drew on evidence from research on patients' experiences of polypharmacy and medicines use. In the RPS report, medicines optimisation is represented as being a 'step change' from medicines management, in contrast to the other documents which suggest that it is facilitated by the systems and processes that comprise the latter model. Only The King's Fund report considered evidence from qualitative studies of people's use of medicines. However, these studies are not without their limitations. We suggest five ways in which researchers could improve this evidence base and so inform the development of future policy: by facilitating reviews of existing research; conducting studies of patient experiences of polypharmacy and multimorbidity; evaluating medicines optimisation interventions; making better use of relevant theories, concepts and tools; and improving patient and public involvement in research and in guideline development.


Subject(s)
Drug Utilization Review/standards , Evidence-Based Medicine , Health Policy , Multimorbidity , Patient-Centered Care/standards , Polypharmacy , Precision Medicine/standards , England , Humans , Practice Guidelines as Topic , Precision Medicine/methods
8.
BMJ Open ; 6(6): e010065, 2016 06 03.
Article in English | MEDLINE | ID: mdl-27259523

ABSTRACT

OBJECTIVES: To evaluate the effectiveness of behaviour changing interventions targeting ordering of thyroid function tests. DESIGN: Systematic review. DATA SOURCES: MEDLINE, EMBASE and the Cochrane Database up to May 2015. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: We included studies evaluating the effectiveness of behaviour change interventions aiming to reduce ordering of thyroid function tests. Randomised controlled trials (RCTs), non-randomised controlled studies and before and after studies were included. There were no language restrictions. STUDY APPRAISAL AND SYNTHESIS METHODS: 2 reviewers independently screened all records identified by the electronic searches and reviewed the full text of any deemed potentially relevant. Study details were extracted from the included papers and their methodological quality assessed independently using a validated tool. Disagreements were resolved through discussion and arbitration by a third reviewer. Meta-analysis was not used. RESULTS: 27 studies (28 papers) were included. They evaluated a range of interventions including guidelines/protocols, changes to funding policy, education, decision aids, reminders and audit/feedback; often intervention types were combined. The most common outcome measured was the rate of test ordering, but the effect on appropriateness, test ordering patterns and cost were also measured. 4 studies were RCTs. The majority of the studies were of poor or moderate methodological quality. The interventions were variable and poorly reported. Only 4 studies reported unsuccessful interventions but there was no clear pattern to link effect and intervention type or other characteristics. CONCLUSIONS: The results suggest that behaviour change interventions are effective particularly in reducing the volume of thyroid function tests. However, due to the poor methodological quality and reporting of the studies, the likely presence of publication bias and the questionable relevance of some interventions to current day practice, we are unable to draw strong conclusions or recommend the implementation of specific intervention types. Further research is thus justified. TRIAL REGISTRATION NUMBER: CRD42014006192.


Subject(s)
Guideline Adherence , Practice Patterns, Physicians'/statistics & numerical data , Thyroid Diseases/diagnosis , Thyroid Function Tests , Unnecessary Procedures , Cost-Benefit Analysis , Evidence-Based Practice , Health Resources , Humans , Practice Guidelines as Topic , Randomized Controlled Trials as Topic , Thyroid Function Tests/statistics & numerical data
9.
Implement Sci ; 11: 20, 2016 Feb 20.
Article in English | MEDLINE | ID: mdl-26897169

ABSTRACT

BACKGROUND: In 2008, the National Institute for Health Research (NIHR) began funding a major 5-year pilot research programme of translational research in England, establishing nine 'Collaborations for Leadership in Applied Health Research and Care' (CLAHRCs). A number of evaluations were carried out to examine whether or not the various collaborations worked as intended and why. In this paper, we examine what the theory of co-production adds to understanding of processes of knowledge creation and translation we observed in one of the CLAHRCs. METHODS: A case study of a successful knowledge translation project was identified from our wider realist evaluation of the mechanisms of closer collaboration at play in the CLAHRC. In the project, a computer simulation model of an emergency pathway for acute ischaemic stroke was built to explore if and how the time between the onset and treatment of the condition could be minimised by redesigning the pathway. The aim of the case study was to improve our understanding of the nature and workings of the mechanisms of closer collaboration that were associated with the more successful projects by examining the relevance of the theory of co-production. Qualitative methods of analysis were used to explore the fit between the mechanisms of closer collaboration we observed in the realist evaluation and the principles of co-production we identified from the literature. RESULTS: We found a close fit between the nine mechanisms of closer collaboration at work in the project and the principles of co-production (active agents; equality of partners; reciprocity and mutuality; transformative; and facilitated). The successful style of collaborative working exemplified by the project was consistent with a strong form of co-production. CONCLUSIONS: In our view, the theory of co-production provides useful insights into what it is about the qualities of collaborative working that inspire the requisite mechanisms for generating knowledge that is translated into practice. The theory provides a potentially useful basis for future knowledge translation programmes and projects in applied health research in a range of contexts.


Subject(s)
Evidence-Based Practice/standards , Health Services Research/organization & administration , Practice Guidelines as Topic/standards , Stroke/therapy , Translational Research, Biomedical/organization & administration , Cooperative Behavior , Diffusion of Innovation , England , Models, Organizational , Organizational Case Studies
10.
Sociol Health Illn ; 38(1): 3-20, 2016 Jan.
Article in English | MEDLINE | ID: mdl-26140336

ABSTRACT

Poor control of chronic illness is often attributed to patients' non-adherence to medical advice and treatment. Policy and practice has traditionally focused on improving adherence, assuming that the more patients comply, the better their control and outcomes will be. Drawing on complexity theory, we question this logic in a secondary analysis of qualitative data from studies of young adults' experiences of growing up with a chronic illness. Examining their sense of mastery of their condition, we found they valued both being in medical control of their condition and having autonomy but had different ideas about how to achieve these goals. While some young adults mostly shared the traditional medical view that achieving good control was the key to retaining their autonomy, others saw control and autonomy as independent, non-linear and potentially conflicting goals. The latter endeavoured to achieve both goals by striking a balance, variously adopting strategies of engagement with and resistance to their regime in the changing social contexts of their lives. We suggest that policy and practice needs to do more to promote autonomy and adaptive capacity, rather than simply maximising adherence and control, recognising the mundane complexity of living with and managing a chronic illness.


Subject(s)
Chronic Disease/psychology , Patient Compliance/psychology , Personal Autonomy , Adult , Female , Humans , Interviews as Topic , Male , Qualitative Research , Social Support , Social Theory , Young Adult
11.
Qual Health Res ; 25(11): 1477-91, 2015 Nov.
Article in English | MEDLINE | ID: mdl-25854617

ABSTRACT

In this article, we present the findings of a participatory realistic evaluation of a 5-year program of health care research intended to promote the translation of knowledge into routine clinical practice. The program was one of the nine pilot Collaborations for Leadership in Applied Health Research and Care funded by the English National Institute for Health Research between 2008 and 2013. Our aim was to delineate the mechanisms by which, and circumstances in which, some projects carried out under the program achieved success in knowledge translation while others were frustrated. Using qualitative methods, we examined how closer collaboration between academics and clinicians worked in four purposefully chosen case studies. In a synthesis of the findings, we produced a "black box" model of how knowledge translation was enabled by the activation of nine mechanisms. These are summarized in the form of five simple rules for promoting knowledge translation through collaborations based on principles of coproduction.


Subject(s)
Community-Based Participatory Research/organization & administration , Health Services Research/organization & administration , Translational Research, Biomedical/organization & administration , Community-Based Participatory Research/methods , Diffusion of Innovation , Health Services Research/methods , Health Services Research/standards , Humans , Organizational Case Studies , Pilot Projects , Program Evaluation/methods , Qualitative Research , Translational Research, Biomedical/methods , Translational Research, Biomedical/standards
12.
Qual Health Res ; 25(3): 336-47, 2015 Mar.
Article in English | MEDLINE | ID: mdl-25281241

ABSTRACT

In this article I examine how young adults used social comparisons in research interviews about their experiences of chronic illness. The interviews were originally conducted not only to provide data for academic analysis but also to generate experiential accounts for publication online as part of an Internet-based health information resource for patients, professionals, and the public wanting to learn about people's real-life experiences of illness in the United Kingdom. Through secondary analysis of these data, I show how the young adults used various social comparisons to represent themselves and their experiences to the target audience. Two new concepts-analogues and foils-are introduced to describe how the young adults likened themselves to, and contrasted themselves with, different reference groups in their accounts. Through these and related strategies, they created positive renditions of their experiences for the audience, helping to inform and support others in the process.


Subject(s)
Chronic Disease/psychology , Interpersonal Relations , Adolescent , Adult , Female , Humans , Interviews as Topic , Male , United Kingdom , Young Adult
14.
Qual Prim Care ; 22(6): 256-61, 2014.
Article in English | MEDLINE | ID: mdl-25887650

ABSTRACT

BACKGROUND: The ordering of thyroid function tests (TFTs) is increasing but there is not a similar increase in thyroid disorders in the general population, leading some to query whether inappropriate testing is taking place. Inconsistent clinical practice is thought to be a cause of this, but there is little evidence of the views of general practitioners, practice nurses or practice managers on the reasons for variation in the ordering of TFTs. AIM: To find out the reasons for variation in ordering of TFTs from the perspective of primary healthcare professionals Methods: Fifteen semi-structured interviews were carried out with primary healthcare professionals (general practitioners, practice nurses, practice managers) that used one laboratory of a general hospital in South West England for TFTs. Framework Analysis was used to analyse views on test ordering variation at the societal, practice, individual practitioner and patient level. RESULTS: A number of reasons for variation in ordering across practices were suggested. These related to: primary healthcare professionals awareness of and adherence to national policy changes; practices having different protocols on TFTs ordering; the set-up and use of computer systems in practices; the range of practice healthcare professionals able to order TFTs; greater risk-aversion amongst general practitioners and changes in their training and finally how primary healthcare staff responded to patients who were perceived to seek help more readily than in the past. CONCLUSION: The reasons for variation in TFTs ordering are complex and interdependent. Interventions to reduce variation in TFTs ordering need to consider multiple behavioural and contextual factors to be most effective.

15.
Int J Integr Care ; 12: e12, 2012.
Article in English | MEDLINE | ID: mdl-22977421

ABSTRACT

INTRODUCTION: A Continuity of Care Research Programme was undertaken in England in 2000-9. The Programme was informed by a conceptual framework proposed by Freeman and colleagues in an earlier scoping study. At the end of the Programme, a conceptual synthesis was carried out in order to confirm or refine the 'Freeman model' of continuity of care. METHODS: A conceptual synthesis of the outputs of the Programme, using Critical Interpretive Synthesis. RESULTS: The conceptual framework underpinning the Freeman model of continuity of care, which prioritises the perspectives of service users and carers, was variously utilised in the Programme. Analysis revealed indications of an emerging shift from the patient and carer 'perspectivist' paradigm of the Freeman model towards a new 'partnership' paradigm where continuity is recognised to be co-constructed by patients, families and professionals, all of whom have an active part to play in its accomplishment. CONCLUSIONS: The projects in the Programme have advanced understanding of patients' perspectives on continuity of care and on the complex nature of this concept. At the same time, they have raised issues and reported findings which may be indicative of an emergent paradigm shift in this area of research, towards a more dynamic partnership model.

16.
Nurs Child Young People ; 24(5): 29-34, 2012 Jun.
Article in English | MEDLINE | ID: mdl-22774663

ABSTRACT

AIM: To gather evidence to support the implementation of standard six of the National Service Framework for Children, Young People and Maternity Services (Department of Health and Department for Education and Skills 2004), which states that care should be provided as close to home as possible. METHODS: A mixed methods study comprising of a systematic review, a national survey of provision of care closer to home (CCTH), four in-depth, qualitative case studies and a cost analysis. FINDINGS: The systematic review suggests that CCTH is no less clinically effective than hospital care. Services identified by the survey fall into three distinct models of provision. Case study data show that families preferred CCTH, but staff face difficulties at organisational and practice levels. Cost analysis suggests there can be cost savings with CCTH, but several factors influence these. CONCLUSION: CCTH may be an effective and feasible option for children and young people who are ill.


Subject(s)
Home Care Services , Child , Evidence-Based Nursing , Humans , United Kingdom
17.
Health Soc Care Community ; 19(6): 576-601, 2011 Nov.
Article in English | MEDLINE | ID: mdl-21718375

ABSTRACT

Health and social care systems experience difficulty in delivering the continuity of care that service users want. Lack of clarity about what continuity means hinders service organisation and delivery. The NIHR Service Delivery and Organisation programme funded a series of research projects to tackle this conceptual confusion, and subsequently commissioned a review of the projects' outputs. The aim was to assess how the projects had progressed conceptualisation and measurement of continuity, and increased knowledge about what influenced it. This paper concentrates on two questions: what is continuity of care, and what influences it? We reviewed the projects' outputs and extracted data using techniques adapted from systematic reviewing methods. We treated the outputs as 'transcripts' and used the Framework approach to qualitative analysis to handle them. This maintained the coherence of individual projects while allowing cross-project themes to emerge. We then produced a narrative synthesis of findings. Service users and carers valued good relationships with professionals; this did not always mean seeing the same person and encompassed trust, the professional's style and communication skills, and the time made available. Service users and carers also valued understanding the patient's condition and treatment. This went beyond giving information, to include communication that recognised individuals' capacities and that was skilled, given sufficient time, and from a trusted source. Service users valued co-ordination between professionals and services; this covered communication, planning, and services' storage and use of information about them. Co-ordination with carers and others was also important. Experiences of continuity were influenced by service users' characteristics and circumstances, care trajectories, the structure and administration of services, professionals' characteristics, carer participation, the wider context of the 'whole person' and satisfaction. The review highlighted how service users, carers and professionals construct continuity dynamically between themselves. This has implications for both professional training and service users' expectations.


Subject(s)
Continuity of Patient Care/organization & administration , Delivery of Health Care/organization & administration , Health Personnel , Health Services Needs and Demand , Humans , Research
18.
Health Soc Care Community ; 13(5): 441-50, 2005 Sep.
Article in English | MEDLINE | ID: mdl-16048532

ABSTRACT

In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.


Subject(s)
Caregivers/psychology , Disabled Children , Equipment and Supplies , Family , Adolescent , Child , England , Home Nursing , Humans , Male
19.
Health Soc Care Community ; 7(2): 91-99, 1999 Mar.
Article in English | MEDLINE | ID: mdl-11560625

ABSTRACT

This paper presents the findings of a study of carers' perspectives on discharge procedures and continuing care arrangements for adults aged 18-65 with physical and complex disabilities. Interviews were conducted with carers of people discharged from younger disabled units (YDUs) and hospital settings. The emphasis carers place on the need to be informed and involved in the discharge planning process is described, and the adequacy of continuing care arrangements from carers' perspectives is examined. The findings of the study raise issues for policy and practice about carers' needs, vis-à-vis patients, to be included as active participants in the discharge planning process.

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