scholarly journals How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Amy Simpson ◽  
Lara Bloom ◽  
Naomi J. Fulop ◽  
Emma Hudson ◽  
Kerry Leeson-Beevers ◽  
...  
Keyword(s):  
Care Coordination ◽  
Structured Interviews ◽  
School Work ◽  
Travel Costs ◽  
Care Plans ◽  
Use Of Technology ◽  
Number Of Factors ◽  
Qualitative Interview Study ◽  
The Uk ◽  
The Impact

Abstract Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. Results Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients’/carers’ journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. Conclusion This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.

scholarly journals The impact of arthritis on the educational and early work experiences of young people: a qualitative secondary analysis

2019 ◽  
Vol 0 (0) ◽  
Author(s):  
Albert Farre ◽  
Sara Ryan ◽  
Abigail McNiven ◽  
Janet E. McDonagh
Keyword(s):  
Young People ◽  
Secondary Analysis ◽  
Young Person ◽  
Full Potential ◽  
Work Experiences ◽  
Health Providers ◽  
Structured Interviews ◽  
Self Advocacy ◽  
School Work ◽  
The Impact

Abstract Introduction Young people’s transition into adulthood is intertwined with the worlds of education and work. Poor health in adolescence has been associated with poorer education and employment outcomes in adulthood. This paper explores the impact of arthritis on the educational and early work experiences of young people with arthritis. Methods We undertook a supplementary secondary analysis of a qualitative dataset comprising narrative and semi-structured interviews of 39 young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Results Our findings illustrate how young people living with arthritis are faced with a range of added disruptions and challenges in their educational/vocational lives. There is an important element of resilience associated with the process of making a career choice and acting upon personal aspirations. Appropriate support and flexibility in the workplace/educational setting can enable successful outcomes, but disclosure is not a straightforward process for young people living with arthritis. Conclusions It is paramount that health providers consistently and effectively address self-advocacy skills with the young person, particularly during educational and vocational transitions. Alongside this, there is the need to further strengthen the health-school/work interface to ensure that young people living with chronic illness can meet their full potential in adulthood.

scholarly journals Plan for the worst, hope for the best? Exploring major events related terrorism and future challenges for UK event professionals

2018 ◽  
Vol 4 (4) ◽  
pp. 513-526 ◽  
Author(s):  
Daniel Baxter ◽  
Jenny Flinn ◽  
Lucrezia Flurina Picco
Keyword(s):  
Marketing Strategy ◽  
Significant Rise ◽  
Destination Marketing ◽  
Major Event ◽  
Structured Interviews ◽  
Content Type ◽  
Future Challenges ◽  
Research Findings ◽  
The Uk ◽  
The Impact

Purpose The purpose of this paper is to investigate major event related terrorism and the resulting challenges that event professionals may face when hosting major events in cities as part of a destination marketing strategy. Design/methodology/approach The research was based in the UK due to the significant rise in terrorist activities that have taken place in its urban cities in recent years. The exploratory nature of this study utilised semi-structured interviews with UK event professionals, enabling a preliminary, in-depth investigation of the challenges that events professionals face as a result of major event related terrorism. Findings The research findings identify three challenges faced by event professionals when organising major events: knowledge and understanding in relation to major event related terrorism; the impact of major event related terrorism in terms of responsibility and accountability; and managing for major event related terrorism in budgetary terms. Research limitations/implications The research is limited to the UK, other destinations will pose their own unique challenges when hosting and managing events. It is suggested that this research be evaluated against similar studies in other destinations. This is a preliminary study and each of the topics identified within the findings warrant further exploration in their own right. Originality/value The paper offers an insight into the challenges faced by event professionals in the UK when delivering major events as part of a destination marketing strategy. With the increase in major event related terrorism in cities the findings of this research are of relevance not only to event professionals but anyone with a role in destination and tourism development.

How did Autistic Children, and their Parents, Experience School Transition during the COVID-19 Pandemic?

2021 ◽  
Author(s):  
Aimee Code ◽  
Umar Toseeb ◽  
Kathryn Asbury ◽  
Laura Fox
Keyword(s):  
School Transition ◽  
School Closure ◽  
School Transitions ◽  
Autistic Children ◽  
Structured Interviews ◽  
School Closures ◽  
Social Distancing ◽  
New School ◽  
The Uk ◽  
The Impact

Due to the COVID-19 pandemic and resultant school closures, social distancing measures, and restrictions placed on routine activities, the start of the academic year in September 2020 was a unique time for those transitioning to a new school. This study aimed to explore the experiences of parents who supported autistic children making a school transition in 2020, and to examine what impact parents perceived the COVID-19 pandemic had on their child’s school transition. Emphasis was placed on identifying facilitating factors that had benefitted school transitions, and barriers, which had negatively impacted these experiences. Semi-structured interviews were carried out with 13 parents of autistic children in the UK. Reflexive thematic analysis was carried out to identify themes in interview data. Parents reported a variety of experiences, and factors that were perceived as facilitatory to some were observed to be barriers by others. For some parents, the COVID-19 pandemic negatively impacted aspects of school transitions. For example, school closure in March 2020, being unable to visit their child’s new school, and social distancing measures were discussed as being barriers to an easy transition. However, other parents identified these factors as being facilitatory for their child or reported that these circumstances created opportunities to approach the school transition in a unique, improved manner. This paper sheds light on the heterogeneity of experiences and perceptions of parents of autistic children, and highlights the need to examine the impact of COVID-19 on school transitions, including practices which may be advantageous to retain.

scholarly journals Implementing and measuring person-centredness using an APP for knowledge transfer: the iMPAKT app

2020 ◽  
Vol 32 (4) ◽  
pp. 251-258 ◽  
Author(s):  
Tanya McCance ◽  
Brighide M Lynch ◽  
Christine Boomer ◽  
Donna Brown ◽  
Christopher Nugent ◽  
...  
Keyword(s):  
Knowledge Transfer ◽  
Patient Experience ◽  
Performance Indicators ◽  
Key Performance Indicators ◽  
Structured Interviews ◽  
Evaluation Approach ◽  
Experience Of Care ◽  
Measurement Framework ◽  
The Uk ◽  
The Impact

Abstract Objective The aim of the study was to evaluate a technological solution in the form of an App to implement and measure person-centredness in nursing. The focus was to enhance the knowledge transfer of a set of person-centred key performance indicators and the corresponding measurement framework used to inform improvements in the experience of care. Design The study used an evaluation approach derived from the work of the Medical Research Council to assess the feasibility of the App and establish the degree to which the App was meeting the aims set out in the development phase. Evaluation data were collected using focus groups (n = 7) and semi-structured interviews (n = 7) to capture the impact of processes experienced by participating sites. Setting The study was conducted in the UK and Australia in two organizations, across 11 participating sites. Participants 22 nurses from 11 sites in two large health care organizations were recruited on a voluntary basis. Intervention Implementing the KPIs and measurement framework via the APP through two cycles of data collection. Main Outcome Measures The main outcome was to establish feasibility in the use of the App. Results The majority of nurse/midwife participants found the App easy to use. There was broad consensus that the App was an effective method to measure the patient experience and generated clear, concise reports in real time. Conclusions The implementation of the person-centred key performance indicators using the App enhanced the generation of meaningful data to evidence patient experience across a range of different clinical settings.

Higher apprenticeships and the new apprenticeship standards

2016 ◽  
Vol 6 (4) ◽  
pp. 401-416 ◽  
Author(s):  
Arti Saraswat
Keyword(s):  
Exploratory Study ◽  
Further Education ◽  
The Body ◽  
Full Time ◽  
Structured Interviews ◽  
Content Type ◽  
Body Of Knowledge ◽  
Number Of Factors ◽  
College Staff ◽  
The Uk

Purpose The UK government is actively promoting higher apprenticeships and degree apprenticeships and this agenda has been gaining momentum amongst the various providers of apprenticeships. The purpose of this paper is to draw on an exploratory study on English further education (FE) colleges and highlight some of the key drivers of delivery, and possible challenges that can be faced by the providers in any expansion of this provision. Staff perceptions on the new apprenticeship standards are also presented in the paper. Design/methodology/approach This paper draws on a qualitative exploratory study with ten FE colleges in England. As part of the study, 19 in-depth semi-structured interviews were conducted with college staff and managers. Findings Higher apprenticeships have the potential to offer work-focussed alternatives to the conventional full-time degree models of higher education, however, the paper sheds light on a number of factors can limit the uptake of higher and degree apprenticeships. Practical implications The paper presents some practical challenges in developing higher apprenticeships and outlines some successful instances of higher apprenticeships which will be useful for those involved in the design and delivery of apprenticeships at FE colleges as well as at other providers. Originality/value This paper draws on research with FE colleges and will be of particular significance to FE colleges and universities that may consider delivering higher apprenticeships. The paper presents insights into institutional experiences and decision-making associated with higher and degree apprenticeships and, in doing so, the paper offers valuable contributions to the body of knowledge in this under-researched area.

Taught resilience programmes: a case study from the perspective of employees of a large pharmaceutical company based in the UK

2020 ◽  
Vol 2 (2) ◽  
pp. 111-129
Author(s):  
Frances Costello
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Structured Interviews ◽  
Content Type ◽  
Individual Resilience ◽  
Personal Resilience ◽  
The Uk ◽  
Almost All ◽  
The Impact

PurposeResearch was undertaken to understand whether taught resilience programmes which highlight the protective factors of resilience would impact individual resilience outcomes. The research focussed on specific resilience dimensions, change agility, physical, emotional and mental resilience, purpose in life and recovery; in an attempt to bridge the gap in understanding whether it is possible through taught programmes to improve resilience through the creation of new habits.Design/methodology/approachThe research was conducted using interpretative phenomenological analysis methods and used semi-structured interviews with 12 participants to understand participants lived experience of a one-day personal resilience programme, conducted within a private global manufacturing organisation.FindingsThe research found that all 12 participants interviewed 12–18 months post-programme made sustainable habits changes increasing personal resilience levels. Participants built new habits into their everyday lives, in the physical dimension exercising more regularly, taking breaks, changes in nutrition and creating better sleep patterns. Through increased understanding of emotional intelligence participants were able to react more favourably to adverse situations and through mental increased resilience focus achieve work and home priorities. In understanding the change journey participants found that they were able to move more quickly through the change cycle. Almost all participants found understanding their life purpose difficult and were not able to give a conclusive answer to what this might be, they found that attending the programme helped reflection in this dimension.Originality/valueThe paper includes an overview of previous resilience research but differs in its examination of the impact of a specific taught resilience programme in a large private sector organisation using IPA methodology.

scholarly journals The impact of story: measuring the impact of story for organisational change

2017 ◽  
Vol 9 (2) ◽  
pp. 170-184 ◽  
Author(s):  
Lisa Rossetti ◽  
Tony Wall
Keyword(s):  
Organisational Change ◽  
Evaluation Framework ◽  
Service Improvement ◽  
Organisational Development ◽  
Structured Interviews ◽  
Content Type ◽  
Health And Social Care ◽  
The Uk ◽  
The Impact ◽  
New Evidence

Purpose The role of dialogue has recently been identified as being important in generating impact in organisations, but the purposeful use of narrative or story-based approaches to effect organisational change and service improvement is still relatively innovative. The purpose of this paper is to document and examine two projects in health and social care settings which aim to generate organisational development and service improvement. Design/methodology/approach The paper evaluates and compares two case studies of story-based organisational development and service improvement projects in the UK. This involved developing an appropriate evaluation framework and assessing the impacts in each case using semi-structured interviews and thematic content analysis. Findings This paper reports the diversity of impacts and outcomes that were generated by the projects. Specifically, it is argued that there is a strong indication that story-based projects best achieve their objectives when clearly linked to key organisational strategic drivers or pathways, as evidenced by robust evaluation. Practical implications This paper recommends that researchers and practitioners, working with story-based methods, design credible and robust evaluative practices, in order to evidence how their work supports organisations to meet current sector challenges. The paper recommends a flexible evaluation framework for evaluating story-based projects in the workplace. Originality/value This paper offers new evidence and insight into the impacts and outcomes of using story-based approaches, and a new evaluation framework for these sorts of projects.

scholarly journals COVID-19 at the Deep End: A Qualitative Interview Study of Primary Care Staff Working in the Most Deprived Areas of England during the COVID-19 Pandemic

2021 ◽  
Vol 18 (16) ◽  
pp. 8689
Author(s):  
Claire Norman ◽  
Josephine M. Wildman ◽  
Sarah Sowden
Keyword(s):  
Primary Care ◽  
Low Income ◽  
Care Staff ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Social Prescribing ◽  
Qualitative Interview Study ◽  
The Impact ◽  
Primary Care Staff ◽  
Deprived Areas

COVID-19 is disproportionately impacting people in low-income communities. Primary care staff in deprived areas have unique insights into the challenges posed by the pandemic. This study explores the impact of COVID-19 from the perspective of primary care practitioners in the most deprived region of England. Deep End general practices serve communities in the region’s most socioeconomically disadvantaged areas. This study used semi-structured interviews followed by thematic analysis. In total, 15 participants were interviewed (11 General Practitioners (GPs), 2 social prescribing link workers and 2 nurses) with Deep End careers ranging from 3 months to 31 years. Participants were recruited via purposive and snowball sampling. Interviews were conducted using video-conferencing software. Data were analysed using thematic content analysis through a social determinants of health lens. Our results are categorised into four themes: the immediate health risks of COVID-19 on patients and practices; factors likely to exacerbate existing deprivation; the role of social prescribing during COVID-19; wider implications for remote consulting. We add qualitative understanding to existing quantitative data, showing patients from low socioeconomic backgrounds have worse outcomes from COVID-19. Deep End practitioners have valuable insights into the impact of social distancing restrictions and remote consulting on patients’ health and wellbeing. Their experiences should guide future pandemic response measures and any move to “digital first” primary care to ensure that existing inequalities are not worsened.

scholarly journals Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e044724
Author(s):  
Cathryn Pinto ◽  
Adam W A Geraghty ◽  
Lucy Yardley ◽  
Laura Dennison
Keyword(s):  
Emotional Distress ◽  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Psychological Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Qualitative Interview Study ◽  
The Uk ◽  
Broad Understanding

ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.

scholarly journals General practitioners’ attitudes and decision making regarding admission for older adults with infection: a UK qualitative interview study

2018 ◽  
Vol 36 (4) ◽  
pp. 493-500 ◽  
Author(s):  
Abigail Moore ◽  
Caroline Croxson ◽  
Sara McKelvie ◽  
Dan Lasserson ◽  
Gail Hayward
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
General Practitioners ◽  
Older Patients ◽  
Ageing Population ◽  
Structured Interviews ◽  
Suspected Infection ◽  
Qualitative Interview Study ◽  
System Factors ◽  
The Uk

Abstract Background The world has an ageing population. Infection is common in older adults; serious infection has a high mortality rate and is associated with unplanned admissions. In the UK, general practitioners (GPs) must identify which older patients require admission to hospital and provide appropriate care and support for those staying at home. Objectives To explore attitudes of UK GPs towards referring older patients with suspected infection to hospital, how they weigh up the decision to admit against the alternatives and how alternatives to admission could be made more effective. Methods. Qualitative study using semi-structured interviews. GPs were purposively sampled from across the UK to achieve maximum variation in terms of GP role, experience and practice population. Interview transcripts were coded and analysed using a modified framework approach. Results GPs’ key influences on decision making were grouped into patient, GP and system factors. Patient factors included clinical factors, social factors and shared decision making. GP factors included gut instinct, risk management and acknowledging an associated personal emotional burden. System factors involved weighing up the pressure on secondary care beds against increasing GP workload. GPs described that finding an alternative to admission could be more time consuming, complex to arrange or were restricted by lack of capacity. Conclusion GPs need to be empowered to make safe decisions about place of care for older adults with suspected infection. This may mean developing strategies to support decision making as well as improving the ease of access to, and capacity of, any alternatives to admission.

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