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Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study.

ABSTRACT: PURPOSE:Emergency Department (ED) visits are costly to the health service and alternative care pathways may address this whilst improving outcomes. We aimed to describe decision-making and preferences of people with epilepsy (PWE) during emergency service use, and views of ED alternatives, including use of an Urgent Treatment Centre and telephone-based support from an epilepsy nurse specialist. METHODS:We conducted a community-based interview study in South East England, informed by a qualitative framework approach. 25 adults with epilepsy and 5 of their carers took part. RESULTS:Participants' choice to attend ED generally corresponded with guidelines, including continuing seizures and injury. Nevertheless, over half reported unwanted or unnecessary ED attendance, mainly due to lack of access to individual patient history, a carer, or seizures occurring in a public place. Participants used proactive strategies to communicate their care needs to others, including 24?-h alarm devices and care plans. Some suggested preventative strategies including referral after ED. Participants highlighted the importance of ambulance staff in providing fast and efficient care that gives reassurance. CONCLUSION:Improving communication and access to preventative, proactive services may facilitate better outcomes within existing care pathways. PWE felt ED alternatives were helpful in some circumstances, but Urgent Treatment Centres or epilepsy nurse specialists were not viewed as an ED replacement.

SUBMITTER: McKinlay A

PROVIDER: S-EPMC7443693 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study.

McKinlay Alison A Morgan Myfanwy M Noble Adam A Ridsdale Leone L

Seizure 20200428

<h4>Purpose</h4>Emergency Department (ED) visits are costly to the health service and alternative care pathways may address this whilst improving outcomes. We aimed to describe decision-making and preferences of people with epilepsy (PWE) during emergency service use, and views of ED alternatives, including use of an Urgent Treatment Centre and telephone-based support from an epilepsy nurse specialist.<h4>Methods</h4>We conducted a community-based interview study in South East England, informed ...[more]

PMID: 32540637

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Project description:Objective: To describe patient satisfaction with pre-hospital emergency knowledge and determine if patients and professionals share a common vision on the satisfaction predictors. Methods: A qualitative study was conducted in two phases. First, a systematic review following the PRISMA protocol was carried out searching publications between January 2000 and July 2016 in Medline, Scopus, and Cochrane. Second, three focus groups involving professionals (advisers and healthcare providers) and a total of 79 semi-structured interviews involving patients were conducted to obtain information about what dimensions of care were a priority for patients. Results: Thirty-three relevant studies were identified, with a majority conducted in Europe using questionnaires. They pointed out a very high level of satisfaction of callers and patients. Delay with the assistance and the ability for resolution of the case are the elements that overlap in fostering satisfaction. The published studies reviewed with satisfaction neither the overall care process nor related the measurement of the real time in responding to an emergency. The patients and professionals concurred in their assessments about the most relevant elements for patient satisfaction, although safety was not a predictive factor for patients. Response capacity and perceived capacity for resolving the situation were crucial factors for satisfaction. Conclusions: Published studies have assessed similar dimensions of satisfaction and have shown high patient satisfaction. Expanded services resolving a wide number of issues that can concern citizens are also positively assessed. Delays and resolution capacity are crucial for satisfaction. Furthermore, despite the fact that few explanations may be given due to a lack of face-to-face attention, finding the patient's location, taking into account the caller's emotional needs, and maintaining phone contact until the emergency services arrive are high predictors of satisfaction.

Project description:INTRODUCTION:Emergency department (ED) visits for epilepsy are common, costly, often clinically unnecessary and typically lead to little benefit for epilepsy management. An 'Alternative Care Pathway' (ACP) for epilepsy, which diverts people with epilepsy (PWE) away from ED when '999' is called and leads to care elsewhere, might generate savings and facilitate improved ambulatory care. It is unknown though what features it should incorporate to make it acceptable to persons from this particularly vulnerable target population. It also needs to be National Health Service (NHS) feasible. This project seeks to identify the optimal ACP configuration. METHODS AND ANALYSIS:Mixed-methods project comprising three-linked stages. In Stage 1, NHS bodies will be surveyed on ACPs they are considering and semi-structured interviews with PWE and their carers will explore attributes of care important to them and their concerns and expectations regarding ACPs. In Stage 2, Discrete Choice Experiments (DCE) will be completed with PWE and carers to identify the relative importance placed on different care attributes under common seizure scenarios and the trade-offs people are willing to make. The uptake of different ACP configurations will be estimated. In Stage 3, two Knowledge Exchange workshops using a nominal group technique will be run. NHS managers, health professionals, commissioners and patient and carer representatives will discuss DCE results and form a consensus on which ACP configuration best meets users' needs and is NHS feasible. ETHICS AND DISSEMINATION:Ethical approval: NRES Committee (19/WM/0012) and King's College London ethics Committee (LRS-18/19-10353). Primary output will be identification of optimal ACP configuration which should be prioritised for implementation and evaluation. A pro-active dissemination strategy will make those considering developing or supporting an epilepsy ACP aware of the project and opportunities to take part in it. It will also ensure they are informed of its findings. PROJECT REGISTRATION NUMBER:Researchregistry4723.

Project description:BackgroundDigitalization of health care has opened up for new ways to involve and engage patients. With this, increased attention has been put on digital patient portals. There exists some research on patient portals for adolescent patients in general and for adults in mental health care. However, no studies on patient portals for adolescents in mental health care have been identified in a recent review. The aim was therefore to explore the views on using patient portals for adolescents in mental health care among persons involved in and/or being affected by the introduction of a patient portal.MethodsA qualitative study was conducted using individual semi-structured interviews with 14 persons who were healthcare providers in child and adolescent mental health care, young representatives from the user panel, or persons affiliated with an EHR-project introducing a patient portal. The main questions addressed their views on introducing patient portals for adolescents in mental health care and how patient portals and access to clinical notes can affect them and their treatment.ResultsThe findings were categorised into four main themes; "Does access to a patient portal help or harm adolescents?", "Who decides access?", "Mostly a political goal" and "Need for support and competency". Informants mentioned situations in which both adolescents' and parents' access to a patient portal could help adolescents in mental health care, but also where it could potentially harm their treatment and threaten confidentiality. Most informants thought that healthcare providers should have the autonomy to determine which information should be shared with whom, but also requested guidelines to ensure equal practice and support in difficult situations. Some perceived patient portals as the result of a political decision, rather than healthcare providers´ wishes, while others described it as a necessary development towards democratization.ConclusionThe informants' views varied from thinking that a patient portal could support adolescents in mental health care, to worrying that it could be detrimental to the treatment. Informants emphasized that the management should facilitate training and support for healthcare providers in using patient portals and telehealth.

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:BackgroundGlobally, 11.4 million untreated obstetric complications did not receive Emergency Obstetric and Newborn Care (EmONC) services yearly, with the highest burden in low and middle-income countries. Half of the Ethiopian women with obstetric complications did not receive EmONC services. However, essential aspects of the problem have not been assessed in depth. This study, therefore, explored the various aspects of barriers and enablers to women's EmONC services utilization in southern Ethiopia.MethodologyA qualitative case study research design was used in nine districts of the Wolaita Zone. A total of 37 study participants were selected using a purposive stratified sampling technique and interviewed till data saturation. Twenty-two key informant interviews were conducted among front-line EmONC service providers, managers, community leaders, and traditional birth attendants (TBAs). Individual in-depth interviews were conducted among 15 women with obstetric complications. The trustworthiness of the research was assured by establishing credibility, transferability, conformability, and dependability. NVivo 12 was used to assist with the thematic data analysis.ResultFive themes emerged from the analysis: service users' perception and experience (knowledge, perceived quality, reputation, respectful care, and gender); community-related factors (misconceptions, traditional practices, family and peer influence, and traditional birth attendants' role); access and availability of services (infrastructure and transportation); healthcare financing (drugs and supplies, out-of-pocket expenses, and fee exemption); and health facility-related factors (competency, referral system, waiting time, and leadership).ConclusionMany women and their newborns in the study area suffered severe and life-threatening complications because of the non-utilization or delayed utilization of EmONC services. A key policy priority should be given to enhancing women's awareness, eliminating misconceptions, improving women's autonomy, and ensuring traditional practices' role in EmONC service utilization. Community awareness interventions are required to enhance service uptake. Furthermore, the health systems must emphasize improving the quality of care, inequitable distribution of EmONC facilities, and essential drugs. The financial constraints need to be addressed to motivate women from low socioeconomic status. Furthermore, intersectoral collaboration is required to maintain a legal framework to control and prohibit home deliveries and empower women.

Project description:PurposeThe emergence of antimicrobial resistance has led to increasing efforts to reduce unnecessary use of antibiotics in primary care, but potential hazards from bacterial infection continue to cause concern. This study investigated how primary care prescribers perceive risk and safety concerns associated with reduced antibiotic prescribing.MethodsQualitative study using semistructured interviews conducted with primary care prescribers from 10 general practices in an urban area and a shire town in England. A thematic analysis was conducted.ResultsThirty participants were recruited, including twenty-three general practitioners, five nurses and two pharmacists. Three main themes were identified: risk assessment, balancing treatment risks and negotiating decisions and risks. Respondents indicated that their decisions were grounded in clinical risk assessment, but this was informed by different approaches to antibiotic use, with most leaning towards reduced prescribing. Prescribers' perceptions of risk included the consequences of both inappropriate prescribing and inappropriate withholding of antibiotics. Sepsis was viewed as the most concerning potential outcome of non-prescribing, leading to possible patient harm and potential litigation. Risks of antibiotic prescribing included antibiotic resistant and Clostridium difficile infections, as well as side effects, such as rashes, that might lead to possible mislabelling as antibiotic allergy. Prescribers elicited patient preferences for use or avoidance of antibiotics to inform management strategies, which included educational advice, advice on self-management including warning signs, use of delayed prescriptions and safety netting.ConclusionsAttitudes towards antibiotic prescribing are evolving, with reduced antibiotic prescribing now being approached more systematically. The safety trade-offs associated with either use or non-use of antibiotics present difficulties especially when prescribing decisions are inconsistent with patients' expectations.

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Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study.

Publications

Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study.

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