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1.
Health Expect ; 27(3): e14092, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38837299

ABSTRACT

INTRODUCTION: Research with young people (YP) is ethically challenging and bound in a complex maze of issues relating to power, voice and representation. Such sensitivities mean that the challenges raised in researching marginalised YP are often hard to navigate. This paper reports on research carried out with YP to explore links between mental health, school exclusion and involvement in criminal gangs. It aims to provide a practical guide to negotiating some of the methodological and ethical challenges experienced. METHOD: In-depth interviews conducted with 28 YP (aged 14-24 years) who were gang involved or seen to be at risk of gang involvement. Research was conducted in youth clubs, alternative provision and youth justice settings. RESULTS: OBSERVATIONS/REFLECTIONS: We reflect on how navigating ethics can create barriers to involving YP as primary informants in research. We consider why it is important to overcome these hurdles and how public engagement work with recognised gatekeepers and the use of creative interview methods can facilitate meaningful encounters, where YP feel able to share valuable insights into their lives. CONCLUSION: Alongside a number of specific learning points, the paper reflects on theories behind research with YP, including the need for recognition of power imbalances and reflexivity. It concludes with thoughts on the practical realities of achieving meaningful participation or an 'authentic voice' with marginalised groups and the importance of this in informing policy and practice. PATIENT OR PUBLIC CONTRIBUTION: The focus of this work was to collect experiences of YP who are recognised as gang-involved or at risk of being so, with a view to informing health and education policies. The scoping study for the project involved extensive public engagement work with YP exploring and trialling suitable methods of accessing, recruiting and ultimately interviewing this target group. This is central to the discussion within the body of the paper.


Subject(s)
Interviews as Topic , Humans , Adolescent , Male , Young Adult , Female , Vulnerable Populations , Mental Health , Peer Group , Juvenile Delinquency , Qualitative Research
2.
BMJ Open ; 13(3): e068751, 2023 03 21.
Article in English | MEDLINE | ID: mdl-36944473

ABSTRACT

OBJECTIVES: The paper reports on experiences from older patients and their carers of current provision of end-of-life care in England. It draws on data from a study that sought to explore the extent to which national policy for end-of-life care in England was aligned with the aspirations of stakeholders. Specifically, the study explored the balance between clinical healthcare vs social and relational care asking how this was aligned to patient priorities at this time of life. Here, we examine the extent to which the patient voice is attended to when health and social care services are delivered to older people and consider how the experiences of patients and carers could be used to improve outcomes. DESIGN: The work draws on data collected as part of a realist informed study using a case study approach to gather data. SETTING: Clinical Commissioning Groups were used as the boundaries of the three case studies and within these geographical areas data was collected in hospitals, care homes, hospices and patient homes. PARTICIPANTS: This paper reports on in-depth interviews conducted with 21 patients at the end of life and 22 relatives/carers (n=43). RESULTS: While the medical care patients received was generally praised, it was reported that relational care, particularly in respect to adult social care received at home, was fragmented and of varying quality. Relational and social support were key to the patient and carer experience yet appeared to be hard to access. CONCLUSION: The work highlights the misalignment between the availability of different types of care at the end of life and patient priorities. More attention should be paid to the voice of older patients and their carers, drawing on their experiences to influence the way policy is translated into practice.


Subject(s)
Caregivers , Terminal Care , Adult , Aged , Humans , Frail Elderly , Qualitative Research , Death
3.
Article in English | MEDLINE | ID: mdl-34845100

ABSTRACT

Children and young people (CYP) have suffered challenges to their mental health as a result of the COVID-19 pandemic; effects have been most pronounced on those already disadvantaged. Adopting a whole-school approach embracing changes to school environments, cultures and curricula is key to recovery, combining social and emotional skill building, mental health support and interventions to promote commitment and belonging. An evidence-based response must be put in place to support schools, which acknowledges that the mental health and well-being of CYP should not be forfeited in the drive to address the attainment gap. Schools provide an ideal setting for universal screening of mental well-being to help monitor and respond to the challenges facing CYP in the wake of the pandemic. Research is needed to support identification and implementation of suitable screening methods.

4.
Prim Health Care Res Dev ; 22: e57, 2021 10 27.
Article in English | MEDLINE | ID: mdl-34702423

ABSTRACT

AIM: To explore the extent to which national policy in end-of-life care (EOLC) in England influences and guides local practice, helping to ensure that care for older people at the EOL is of a consistently good quality. BACKGROUND: Whilst policy is recognised as an important component in determining the effectiveness of EOLC, there is scant literature which attempts to interrogate how this happens or to hypothesise the mechanisms linking policy to better outcomes. METHOD: This article reports on the second phase of a realist evaluation comprising three case studies of clinical commissioning groups, including 98 in-depth interviews with stakeholders, meeting observation and documentary analysis. FINDINGS: This study reveals the key contextual factors which need to be in place at micro, meso and macro levels if good quality EOLC for older people is to be achieved. The findings provide insight into rising local inequalities and reveal areas of dissonance between stakeholder priorities. Whilst patients privilege the importance of receiving care and compassion in familiar surroundings at EOL, there remains a clear tension between this and the medical drive to cure disease and extend life. The apparent devaluing of social care and subsequent lack of resource has impacted significantly on the way in which dying is experienced.Patient experience at EOL, shaped by the care received both formally and informally, is driven by a fragmented health and social care system. Whilst the importance of system integration appears to have been recognised, significant challenges remain in terms of shaping policy to adequately reflect this. This study highlights the priority attached by patients and their families to the social and relational aspect of death and dying and shines a light on the stark disparities between the health and social care systems which became even more evident at the height of the Covid-19 pandemic.


Subject(s)
COVID-19 , Terminal Care , Aged , Death , Humans , Pandemics , Policy , SARS-CoV-2
5.
J Health Serv Res Policy ; 25(4): 238-245, 2020 10.
Article in English | MEDLINE | ID: mdl-32228095

ABSTRACT

OBJECTIVES: To explore the extent to which national policy in end of life care in England influences and guides local practice, to ensure that care for patients over the age 75 years is of a consistently good quality. METHOD: This paper reports on phase one of a larger study and focuses its discussion on the high-level (macro) determinants emerging from the analysis. Fifteen in-depth interviews were conducted with professionals involved in the development of English policy in end of life care. RESULTS: Factors influencing the quality of end of life care were stratified into three system levels: meso, macro and micro. English national policy was reported to be an important macro-level determinant of effective outcomes, and examples were provided to demonstrate how policy was influencing practice. Yet, the complexity of the area and the range of interacting contributory factors mean the value of policy alone is hard to assess. At the macro-level, concern was voiced around: whether policy was effective in tackling rising inequity; lack of mandatory leverage to exert change relating to end of life outcomes; the impact of ongoing infrastructural change on statutory services; workforce pressures; over-reliance on acute services and continued abdication of responsibility for end of life care to medical professionals supported by the continued dominance of the medical model of care. CONCLUSIONS: The links between the existence of policy at the macro-level of the system and the effective enactment of good practice remain unclear, although strategies are suggested to help achieve greater national consistency in end of life care outcomes. Policymakers must pay attention to the following: controlling the rise in localism and its contribution to regional inequalities; the impact of continuous infrastructural change together with increasing workforce pressures; encouraging broader professional and public responsibility for recognition and care of those at the end of life.


Subject(s)
Health Personnel/psychology , Health Policy , State Medicine/organization & administration , Terminal Care/organization & administration , Aged , Aged, 80 and over , Communication , England , Female , Health Behavior , Health Status Disparities , Health Workforce , Humans , Interviews as Topic , Male , Qualitative Research , Socioeconomic Factors , State Medicine/standards , Terminal Care/standards
6.
Qual Health Res ; 27(11): 1652-1663, 2017 Sep.
Article in English | MEDLINE | ID: mdl-28799475

ABSTRACT

Schwartz Rounds are evidence-based interdisciplinary discussions where health care staff can share experiences of the emotional and social aspects of care, to support improvements in patient care. Developed in acute services, they are now being implemented in various settings including U.K. community and mental health services where their implementation has not been researched. Realist evaluation was used to analyze three community and mental health case studies of Round implementation, involving Round observations ( n = 5), staff interviews ( n = 22), and post-Round evaluation sheets ( n = 206). Where Schwartz Rounds were successfully implemented and facilitated, the discussions enabled emotional resonance across interdisciplinary colleagues about caring experiences, enabling the recognition of a common humanity. Participants appreciated attending Rounds and saw they improved communications, trust, and openness with colleagues and enabled more compassionate care with patients. The wide geographical dispersal of staff and work pressures were challenges in attending Rounds, and strong leadership is needed to support their implementation.


Subject(s)
Community Mental Health Services , Medical Staff/psychology , Social Support , Teaching Rounds/methods , Communication , Emotions , Empathy , Female , Humans , Interdisciplinary Communication , Interviews as Topic , Leadership , Male , Patient Care/standards , Qualitative Research , Quality Improvement
7.
BMC Med Educ ; 16(1): 246, 2016 Sep 22.
Article in English | MEDLINE | ID: mdl-27658411

ABSTRACT

BACKGROUND: Training to be a doctor and caring for patients are recognized as being stressful and demanding. The wellbeing of healthcare professionals impacts upon the wellbeing and care of patients. Schwartz Centre Rounds (SCRs), multidisciplinary meetings led by a trained facilitator and designed for hospital staff, were introduced to enhance communication and compassion, and have since been widely adopted as a way of fostering compassion. The continuum of education suggests that medical students need to develop these attributes in conjunction with resilience and maintaining empathy. The benefits of SCRs in fostering this development in medical students is unexplored. The objective of this study was to examine the potential of SCRs within the undergraduate curriculum. METHODS: Two student-focused SCRs were piloted at a major medical school. The sessions were based on the current format implemented across the US and UK: a presentation of cases by a multidisciplinary panel followed by an open discussion with the audience. Participants were asked to complete an evaluative questionnaire immediately following the sessions. Seven students took part in a focus group to explore their views on the SCR. Data sets were examined using descriptive statistics and thematic analysis. RESULTS: Feedback was obtained from 77 % (258/334) Year 5 and 37 % (126/343) Year 6 students. Mean student ratings of the session on a five-point scale, where 1 = poor and 5 = exceptional, were 3.5 (Year 5) and 3.3 (Year 6). Over 80 % of respondents either agreed or strongly agreed that the presentation of cases was helpful and gave them insight into how others feel/think about caring for patients. Eighty percent said they would attend a future SCR and 64 % believed SCRs should be integrated into the curriculum. Focus group participants felt SCRs promoted reflection and processing of emotion. Students identified smaller group sizes and timing in the curriculum as ways of improving SCRs. CONCLUSION: Students were positive about SCRs, preferring them to their current reflective practice assignments. Whether this results in sustained benefits to trainee doctors is yet to be explored. Consideration is given to overcoming the challenges that were encountered, such as optimal timing and participation. Staff training and costs are potential obstacles to adoption.

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