Search

This paper presents a new methodological model that was developed whilst carrying out an Institutional Ethnography to explore school food working practices. The model brings together two complementary approaches; Institutional Ethnography and Systems Thinking, to offer a novel approach to the analysis and visualisation of ethnographic data as systems maps that show how power shapes practices. This novel contribution allows for the mapping of complex working practices to show interdependencies and flows, and addresses limitations in the applicability of Institutional Ethnography to policy research. This approach will be useful for researchers and practitioners who want to utilise findings from Institutional Ethnography to design effective interventions, change outcomes of working practices, or tackle policy problems. [ABSTRACT FROM AUTHOR]

Fieldwork encounters are not only contingent to biographical subjectivities, but are mediated by a confluence of identity, place and embodiment. This paper offers reflexive accounts of researchers with various socio-cultural and disciplinary backgrounds, who collaborated as a team to examine the varied funerary experiences and needs of established minorities and recent migrants in England and Wales. Focusing on the researchers' varied personal experiences with death and bereavement and on their performances of minority and majority ethnic and migrant identities, the paper highlights the mediated and embodied nature of fieldwork. It argues that reflection on the various aspects of intersectional researcher identity is necessary for a rigorous fieldwork practice that takes transparency and politics into account. This facilitates a deeper understanding of the positionality of both researchers and interlocutors, and the situated co-production of knowledge. In doing so, the paper illustrates that conducting research with a diverse team of researchers contributes to better understanding the complexity and multifacetedness of social phenomena. [ABSTRACT FROM AUTHOR]

Over the past decade, there has been a growing trend towards the use of 'big qualitative data' in applied health research, particularly when used as part of mixed methods evaluations of health policy in England. These 'big qualitative' studies tend to be longitudinal, complex (multi-site and multi-stakeholder) and involve the use of multiple methods (interviews, observations, documents) and large numbers of participants (n = 100+). Despite their growing popularity, there is no methodological guidance or methodological reflection on how to undertake such studies. Qualitative researchers are therefore faced with a series of unknowns when designing large qualitative studies, particularly in terms of knowing whether existing qualitative sampling and analysis methods are appropriate in this context. In this paper, we use our experience of undertaking a big qualitative study, as part of a national mixed methods evaluation of a health policy in England to reflect on some of the key challenges that we faced in our qualitative study, which broadly related to: sample size, data analysis and the role of patient and public engagement. Underpinning these difficulties was the challenge of being flexible and innovative within the largely positivist research climate of applied health research and being comfortable with uncertainty relating to the three issues outlined. The reflections we present are not to be viewed as a method 'how to' guide, but rather as a platform to raise key issues relating to the qualitative methods that we found challenging, in order to stimulate discussion and debate amongst the qualitative community. Through this paper, we therefore hope to demystify what it is like to undertake such a study and hope to spark much needed discussion and innovation to support the future design and conduct of qualitative research at scale. [ABSTRACT FROM AUTHOR]

Objectives: System-wide learning for patient safety is a core challenge for the health care sector, despite the prevalence of localised reporting and learning approaches. There is growing interest in how health care services could emulate other safety-critical sectors with the introduction of specialist safety investigation agencies to inform sector-wide safety. This paper reports on a study of the introduction and early operation of one such agency in the English health and care system. Methods: This was a qualitative interview study carried out between 2019 and 2021 and co-designed through a partnership between University researchers and the Executive Team from the Healthcare Safety Investigation Branch (HSIB) to explore the organisational development of this 'first of type' organisation. The study involved interviews with 33 internal and external stakeholders and documentary analysis of HSIB reports. Results: The study findings highlight the organisational competencies and developmental challenges experienced in the early years of HSIB operations focusing on (i) independence and fit within the wider system; (ii) the selection and scope of investigations; (iii) the methodology and investigation approach; and (iv) the skill and competencies of investigators. Conclusions: This study offers practical learning to health care decision-makers about the importance of securing independence and integration, about the production of system-wide learning, the standardisation of robust methodologies and the support for a multidisciplinary specialist workforce. [ABSTRACT FROM AUTHOR]

This paper concerns parenting assessments which are integral to child-safeguarding professional processes in England, and which involve Deaf parents whose primary language is British Sign Language (BSL). In an under-researched area of social work, the research aim was to contribute to the existing literature by eliciting the practice wisdom of specialist professionals. Specifically, it draws upon their linguistic and cultural knowledge of the Deaf community when they are involved in parenting assessments with Deaf parents who are subject to safeguarding concerns. Data about these professionals' actual experiences of navigating Deaf cultural-competency in contemporary child protection practices were collected through seven video-recorded, semi-structured interviews conducted in BSL. Using interpretive phenomenological analysis, data were analysed in their source language (BSL). This article focusses on one key theme, termed 'Professional Recognition', which incorporates a) the identification of specialist roles and b) the impact of referral processes and protocols on assessment outcomes. The findings highlight participants' perspectives on the benefits and disadvantages of their specialist role in this context. Although their brokerage skills, cultural competence, linguistic fluency and specialist knowledge of the Deaf community are highly regarded and valued by some colleagues, there is insufficient recognition of their existence by the majority. Secondly, participants are concerned by the inefficiency and inconsistency of the referral processes and protocols which they consider have adverse effects on assessment outcomes, and consequently the parents involved. [ABSTRACT FROM AUTHOR]

Background: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. Aim: To explore what works best to promote family carers' experiences of hospice-at-home. Design: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. Setting/participants: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). Results: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient–carer dyad. Conclusions: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death. [ABSTRACT FROM AUTHOR]

Responding directly to the themes of the Special Issue, this paper addresses a surprising absence to date of the voluntary sector's important role in the constitution of place leadership. Drawing on an empirical study of locally rooted voluntary sector organisations in a district of the Midlands of England, we aim to untangle the complex relationship between leadership, place and the voluntary sector, building on recent advances in the collective and critical approaches to leadership studies. A thematic analysis of a rich qualitative dataset highlighted three core themes of the voluntary sector contribution to collective place leadership: their ability to draw on and mobilise local knowledge, their positioning in a web of dense local relationships, and the notion that their intrinsic characteristics are a key source of their distinctiveness and value to the local governance network that constitutes the district's place leadership. In addition to contributing to a nuanced understanding of the voluntary sector's place in both the leadership and place leadership studies corpus, our findings shed light on the multiplexity and tensions of leading in the collective, as well as the extent to which the voluntary sector is constrained by wider structures and macro-dynamics. [ABSTRACT FROM AUTHOR]

This paper draws on two experiences of undertaking comparative research in England, Sweden and Italy, and offers a discussion of the kinds of dilemmas raised in relation to language and meaning surfaced by these. Its primary focus is to examine the reflexive construction of meaning, both in relation generally to the workings of an international research team and, more specifically, how such construction of meaning impacts on the process of qualitative interviewing across linguistic and cultural boundaries. The article argues that a culture of reflexive research practice is helpful for approaching national differences, to facilitate understanding in internationally mixed research teams and to support and empower participants in research, in second languages and differing cultures. Overall, the paper attempts to advance some tentative ideas that other international researchers may be able to consider and deploy in relation to their own research ambitions. [ABSTRACT FROM AUTHOR]

This paper reflects on the value of diary methods in the context of a qualitative, longitudinal narrative inquiry exploring the higher education decision-making of further education students in England. Event-based diaries were used alongside interviews and focus groups over a 14-month period to gain in-depth insights into the reasons and influences informing their decision-making trajectories. I explore the challenges, successful approaches and advantages of employing diary methods with young people in this context. Challenges consisted of maintaining participant engagement, which was overcome by combining methods and incorporating a reactive co-participatory element. Yet, a number of advantages emerged from participants' engagement with diary keeping which enhanced the richness of the data; this inspired deeper reflections on decision-making and influences and provided a private space for participants to disclose personal difficulties that could not be obtained via interviews. [ABSTRACT FROM AUTHOR]

This paper presents findings from a study of family literacy provision in England and focuses on the effects of family literacy programmes on the home literacy environment. The fieldwork took place between September 2013 and December 2014 and involved 27 school-based programmes for pupils aged between 5 and 7, and their parents. The study used mixed methods, which involved observations of family literary sessions, a quantitative pre- and post-survey of 118 parents, and pre- and post-telephone qualitative interviews with a sub-sample of 24 parents. Building on previous theoretical work, the study conceptualises the home literacy environment into four areas (family resources; parental literacy behaviours and attitudes; parental beliefs and understandings; and family literacy activities and practices). The paper develops understandings of how parents translate and implement messages from family literacy into the home setting, and it shows how participation in these programmes leads to changes in family literacies across all four areas identified. [ABSTRACT FROM AUTHOR]

Objectives: The paper reports on an empirical study of Health and Wellbeing Boards (HWBs) in England. Established by the Health and Social Care Act 2012, HWBs act as place-based hubs for leaders in health, social care, local government and other sectors to come together to address health improvement and the wider determinants of health. Methods: We conducted a three-year study of HWBs (2015–2017) in five localities across England. This involved collecting qualitative data from semi-structured interviews with key actors in the HWBs at strategic and operational levels, and focus group sessions with voluntary-sector participants at each HWB. Results: HWBs have largely followed the path of previous partnerships in terms of a lack of clear aims and objectives, lack of ownership and accountability by partners, and an absence of any significant impact on health outcomes. Conclusions: Many of the features of unsuccessful partnership working were largely displayed by HWBs. Boards require more executive power and ownership from the bottom up if they are to have any real impact. [ABSTRACT FROM AUTHOR]

Substance use and mental ill health constitute a major public health burden, and a key global policy priority is to reduce illicit and other harmful substance use. Amphetamine-type stimulants (ATS) are the second most used class of illicit drugs and a range of mental health issues have been documented amongst users. This paper explores the relationship between mental health and ATS use, through a thematic analysis of qualitative interviews with n = 18 current and former ATS users in England. The findings are presented by trajectory point of; (1) Initiation of ATS use; (2) continued and increased ATS use and (3) decreased and remitted ATS use. This work helps to develop understanding around the complex and bi-directional relationship between ATS use and mental health. Many ATS users lead chaotic lives and engage in multiple risk behaviours, however there is a need to better understand and conceptualise the dynamic interaction between different individual, social, environment and cultural factors that determine individuals' mental health and substance use. There is no 'one size fits all' approach to prevention and treatment, and these findings highlight the need for more joined-up, tailored and holistic approaches to intervention development. [ABSTRACT FROM AUTHOR]

Summary This paper reports on part of a research study carried out in three local authority adult social care departments in England, which explored links between adult safeguarding and personalisation. The study included statistical analysis of data on safeguarding referrals and the take up of personal budgets and qualitative interviews with managers, social workers, other staff working on safeguarding and with service users. The paper reports the findings from 16 interviews with managers and social workers, highlighting their perspectives and experiences. Findings Five main themes emerged from our analysis: contexts and risk factors; views about risks associated with Direct Payments, approaches to minimising risk; balancing risk and choice; and weaving safeguarding and personalisation practice. Social workers identified similar ranges and kinds of risks to those identified in the national evaluation of Individual Budgets. They described a tension between policy objectives and their exercise of discretion to assess and manage risks. For example, some described how they would discourage certain people from taking their personal budget as a Direct Payment or suggest they take only part of a personal budget as a Direct Payment. Application This exploratory study supports the continued need for skilled social workers to deliver outcomes related to both safeguarding and personalisation policies. Implementing these policies may entail a new form of ‘care and control’, which may require specific approaches in supervision in order to ensure good practice is fostered and positive outcomes attained. [ABSTRACT FROM AUTHOR]

Older adults with bipolar disorder experience distinct challenges compared to younger age groups with bipolar disorder. They potentially require adaptations to the care they receive. This study aimed to explore experiences of care and changing care needs in older adults with bipolar disorder. People with bipolar disorder (aged ≥60) were recruited through three NHS Trusts in the North West of England, charity organisations, a confidential university participant database, and social media. Participants completed single time-point biographical narrative interviews, which were analysed using narrative analysis. Sixteen participants' accounts led to the creation of four themes: (1) 'Navigating the disruption caused by diagnosis'; (2) 'The removal of services that provided hope'; (3) 'Later life: We are on our own now'; and (4) 'Changing care needs in later life: We still need support'. The care needs of older adults with bipolar disorder appear to change over time, and services often fail to offer adequate, tailored care for this group at present. Current support requires adaptation to be effective and appropriate and to enable this group to age well in later life. [ABSTRACT FROM AUTHOR]

Objectives: The introduction of medical revalidation in 2012 has been a controversial and radical change to medical regulation in the UK. It involved changes to the way organizations manage medical performance, and to the relationships between doctors, their employers and the professional regulatory body. In this paper, we explore the implementation of medical revalidation, analysing the change process and its consequences for doctors and organizations. Methods: We conducted a qualitative investigation of the implementation of revalidation in 15 case study organizations in 2016–2017, collecting documents and undertaking a total of 80 interviews with medical and non-medical staff. We used Normalization Process Theory to frame and structure the analysis. Results: Revalidation reforms were largely implemented successfully within and across our case study organizations, with evidence of growing acceptance of the purpose and processes of revalidation. There was an emergent shift from securing doctors' compliance towards the use of revalidation to strengthen clinical governance, and towards evaluating revalidation processes and seeking to make them more effective. However, there was substantial variation in the implementation and impact of revalidation; it was still not fully understood by many doctors, and revalidation processes were highly reliant on a few key individuals in each organization. The changes brought about by revalidation have had consequences for the way in which doctors construct their identity and the way they relate to the organizations in which they work. Conclusion: Despite considerable early scepticism and overt opposition in the medical profession, revalidation has become gradually accepted, embedded and even valued over time. Its impact and effectiveness are still questioned by many stakeholders, and the focus of attention has now shifted towards revising and improving the way revalidation works in practice. [ABSTRACT FROM AUTHOR]

Objective: This paper aims to explore the nature of clinical commissioning groups (CCGs) in England as membership organizations. Utilizing the concept of meta-organization as a lens, we discuss the impact that this organizational form might have on CCGs' ability to become 'strategic commissioners'. Methods: We used a longitudinal qualitative approach to explore the adoption and implementation of primary care co-commissioning. The study was undertaken between May 2015 and June 2017 and included interviews with senior policy makers, analysis of policy documents, two telephone surveys, and case studies in four CCGs nationally. Results: CCGs operate as membership organizations with closed boundary and low stratification, whereby a consensus or majority needs to be reached by members when activities impact on membership or the CCG's constitution. While CCGs should move towards a more strategic commissioning role that is focused on local priorities agreed by their members, they are faced with a complex system of accountabilities and responsibilities, which makes this difficult to achieve. Conclusions: The nature of CCGs as membership-based meta-organizations has the potential to both help and hinder CCGs in becoming strategic commissioners. The complexities in accountability and governance that the membership approach introduces, and the potential difficulties that CCGs face with competing meta-organizations, raises questions about the future of CCGs as membership organizations. [ABSTRACT FROM AUTHOR]

The article discusses the highlights of the EUROQUAL conference held in London, England in May 2010 to celebrate the diversity, strength and vitality of European qualitative research. The EUROQUAL programme, which is funded by the European Science Foundation (ESF), involved Austria, Belgium, Cyprus, Denmark, Finland, Germany, Luxembourg, Netherlands, Norway, Poland, Spain, Sweden, Switzerland and Great Britain. Plenary speakers for the conference include David Silverman and Norman Denzin.

Introduction International health policies recognise patient empowerment, resulting in diverse empowerment models and systems. Research on organisational systems for implementing patient empowerment between countries or from organisational stakeholders’ perspective, however, is limited. Aims and methodology: This paper explores and compares organisational systems and structures for patient empowerment implementation in six acute public hospitals in England and Greece (three in each country), their cross-case and cross-national similarities and differences. It uses a comparative, qualitative, explanatory embedded case study design. Semi-structured interviews with a representative sample of stakeholders (n = 33) and documentary sources (n = 79) were analysed with framework. Results Two main patient empowerment themes were identified: (1) organisational leadership, systems, structures; (2) operational structures, services, mechanisms and activities. Generic organisational systems and structures for patient empowerment varied across-cases, but with common organisation of empowerment roles in England and common leadership in Greece. Operational structures, services and mechanisms supporting empowerment varied across-cases and cross-nationally, but with similarities in the main services. Conclusion Implementation of patient empowerment was weaker in Greece than in England, attributable to differing approaches to strategic and operational leadership, limited development of strategies and influential organisational structures. Overall, patient empowerment is well-embedded in organisations with a highly visible patient empowerment profile; commitment to policies and strategy implementation at different levels; strategic and operational leadership investing in dedicated roles with clear authority for patient empowerment, influential empowerment structures and mechanisms. [ABSTRACT FROM AUTHOR]

Previously I have used qualitative data to develop a four-domain (physical, social, temporal, and psychological) model of attachment to place for older people in rural areas. Drawing on data for 920 older people (60+ years) living in rural areas of South West England and Wales, and utilising items developed from the initial qualitative analysis to represent each domain empirically, this paper uses exploratory factor analysis to identify the underlying factor structure of place attachment for older people in these rural areas. It examines the match between the resulting factor structure and an a priori conceptualisation of place attachment. I develop subscales and an overall scale of place attachment and tests for reliability and rating scaling assumptions (content validity). Using principal axis factoring three factors are identified: social attachment, aesthetic attachment, and appropriateness of resources and the environment. The three factors account for 23.5%, 11.6%, and 6.4% of the variance and good internal reliability is demonstrated (Cronbach's α 0.71, 0.72, and 0.72). The analysis suggests that this is a psychometrically reliable and valid instrument fit for the purpose of measuring attachment to place for older people in rural areas. However, further psychometric evaluations with other samples are required to confirm the model structure, and to develop a fourth domain representing an historical attachment to place. [ABSTRACT FROM AUTHOR]

Objectives: To explore some of the key assumptions underpinning the continued development of general practitioner-led commissioning in health services. Methods:Qualitative data from two studies of service improvement in the English NHS were considered against England's plans for GP-led commissioning. These data were collected through in-depth interviews with a total of 187 professionals and 99 people affected by services in 10 different primary care trust areas across England between 2008 and 2009. Results: Internationally, GPs are seen to have a central position in health systems. In keeping with this, the English policy places emphasis on the 'pivotal role' of general practitioners, considered to be ideally placed to commission in the best interests of their patients. However, our evidence suggests that general practitioners do not always have a pivotal role for all patients. Moreover, it is planned that the new commissioning groups in England will not be subject to top-down performance management and this raises the question of how agreed quality standards will be met under the proposed new system. Conclusions: This paper questions the assumption that GPs are best placed to commission health services in a way that meets quality standards and leads to equitable outcomes. There is little evidence to suggest that GPs will succeed where others have failed and a risk that, without top-down performance management, service improvement will be patchy, leading to greater, not reduced, inequity. [ABSTRACT FROM AUTHOR]

Objectives: There have been calls for greater exchange between research and practice in health care policy and management, but little empirical research on what commissioners of research and researchers themselves consider appropriate, good quality research knowledge. This paper addresses this gap, considering the views of commissioners and producers of policy and management research in health care and other fields. Methods: Qualitative semi-structured interviews with 18 commissioners and producers of research, in central government, the NHS and other commissioning organizations, and in universities and independent sector providers. Results: Commissioners and producers agreed that research often fails to fulfil policy-makers' and managers' needs, and that greater interaction is required to improve this relationship. However, they offered differing accounts of the nature of research knowledge (as a 'product' or a 'mindset'), and of what constitutes value, validity and originality in research, reflecting the differing priorities and pressures faced by the two groups. Conclusions: Efforts to promote greater interaction between research, policy and practice, and more critical, reflexive engagement between policy-makers, managers and researchers, are likely to face significant obstacles given these competing constructions of research knowledge and their reinforcement by divergent priorities. [ABSTRACT FROM AUTHOR]

This paper examines the ways in which young women articulated strategies of resistance to internalised abortion stigma. It does so through secondary analysis of young women’s narratives from two qualitative studies in England and Wales. Whilst participants felt stigmatised by their abortion[s] in different ways, many also resisted stigmatisation. They did this through different stigma resistance strategies that were shaped by a number of different interactions: their socio-economic situations, family and relationships contexts, the circumstances in which they became pregnant, and their beliefs and values with respect to abortion and motherhood. Being able to construct their abortion decision as morally sound was an important element of stigma resistance. Although socio-cultural norms and values on abortion, reproduction, and motherhood were shown to constrain women’s reproductive choices, these norms were all open to challenge. The women were more likely to struggle with their abortion decision-making when they had internalised negativity around abortion. [ABSTRACT FROM AUTHOR]

This article critically explores research with marginalized communities. We provide an insight into our work with the Roma community, reflecting on innovation, opportunities, and barriers, alongside the need for more work in this area. A particular focus here surrounds novel methodologies for exploring the health and well-being of such groups and ways of co-producing research. This article also raises awareness around arts-based social prescribing with marginalized communities and the need to upscale work in this regard. Through doing so, we hope to influence practice, raise awareness around work with the Roma community and enable more creativity within the broader field. [ABSTRACT FROM AUTHOR]

Caregiving is recognised as a source of stress with potential for negative health impacts as well as positive outcomes and development of resilience. For young carers, children, and adolescents providing care for close family members, adaptation through resilience is crucial, yet work using a resilience approach is limited. This study explored protective factors and pathways to resilience in a sample of young carers, through application of the socioecological model in caring relationships. An in-depth qualitative approach was used, with in-person interviews facilitated by auto-driven photo elicitation. Deductive thematic analysis was applied, framed by three levels (individual, community, and society) of the socioecological model of resilience. Twelve participants (nine girls and three boys) aged 5–18 years, each providing care to a family member, were recruited using opportunity and volunteer sampling via carers' centres in the southwest of England. Ten key themes were identified, four at the individual level: pre-empting challenges and planning, cognitive strategies, emotional strategies, and seeking solitude; three at the community level: family support, friendships, and pets and inanimate objects; and three at the society level: professional support, access to caregiver activities and community, and being outdoors. The location of themes at each level indicated relevance of the socioecological model to identification of protective factors in a young carer population. These findings have important applications for guidance to charities and organisations supporting young carers. Identification of factors that promote resilience offers support for the development of well-informed interventions, which harness these protective factors to develop resilience and improve health for young carers. [ABSTRACT FROM AUTHOR]

Introduction: Healthcare professionals have development needs related to their consumption, use, and practice of clinical research. Little is known about these issues in mental health services specifically. Objectives: A survey of healthcare staff working in an NHS Mental Health and Disability Trust in England was conducted to describe research capacity and culture compared with previously reported samples, and to examine subgroup differences. Methods: An online questionnaire was utilized. The main measure was the Research Capacity and Culture tool comprising measures of individual's perceived research skills and of team and organizational research culture. Previous studies using the same measure were systematically identified, and pooled results, weighted by sample size, were calculated. Analyses were descriptive (current sample versus previous results) and inferential (comparisons between demographic and professional groups within the current sample). Results: N = 293 people completed the survey. The median item scores were poorer than those of pooled samples from studies reporting median item scores on 39/51 (76.5%) occasions and poorer than those pooled samples of studies reporting mean item scores on 51/51 (100.0%) occasions. Individual capability for research was in the 'less than adequate' range more than in previous samples (71.4% vs. 42.9%). For team culture items, the proportions were 84.2% vs. 78.9%, while most responses about organizational culture were in the 'adequate' range (55.6% vs. 66.7%). Staff >20 years employment had poorer perceptions of team and organizational culture. Conclusion: Perceptions of individual research capacity and team and organizational culture were poor compared with previous studies, most of which were conducted in non-mental health settings. There is need for development of research capacity and culture in mental health services including opportunities to develop basic research skills through to strategic developments to promote clinical academic careers. There is considerable room for improvement in the way organizations support research and signpost opportunities. [ABSTRACT FROM AUTHOR]

The Mental Capacity Act 2005, covering England and Wales, sets out formal tools to extend autonomy past the onset of incapacity that protect an individual's right to retain autonomy in decision-making. Despite policy drivers who encourage healthcare professionals to support advance decision-making for future care, very few individuals living with frailty engage in doing so. In this article, we interrogate these issues using data from a qualitative study of older people living with frailty, which engages with how those living and coping with varying degrees of frailty experience their situation day to day and their perceptions of planning for incapacity and decision-making. After critically evaluating the viewpoints of older people living with frailty and their carers, we assess the significance of their perceptions for the contemporary debates surrounding autonomy and how they align with the policy perspectives and the clinical practice of advance care planning. [ABSTRACT FROM AUTHOR]

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. Aim: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. Design: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. Setting/participants: Twenty-two siblings (17–42 years old) were recruited via a children's hospice in England. Results: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. Conclusions: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships. [ABSTRACT FROM AUTHOR]

Research into children’s perspectives and understandings of emotional difficulties is limited and methodologically varied. In this paper we explore young children’s perspectives and understandings of emotional difficulties in their peers. We conducted five focus groups involving a total of 25 children. The children, aged eight and nine, were presented with vignettes representing peers experiencing emotional difficulties, and invited to discuss their perspectives on possible causes. We also explored their emotional and behavioural reactions to the vignette characters.Using interpretative phenomenological analysis we identified three themes: Searching for an Explanation; Empathy versus Blame; and Consequences and Solutions. The children drew on their own emotional experiences in their sense-making, and the extent to which they held the character responsible for their behaviour was particularly important in influencing their responses towards the characters. [ABSTRACT FROM PUBLISHER]

The use of complementary and alternative interventions is growing and gaining popularity, both in the UK and internationally, with significant financial and emotional implications. Complementary and alternative interventions are often utilised by parents of children with Autistic Spectrum Disorders and research has investigated parental beliefs. There is, however, limited understanding regarding what professionals believe about the use of alternative treatments. In this paper we explore the opinions of a range of different professionals about alternative treatments and found that while some have an open-minded opinion, there was a tendency to hold beliefs that these treatments are ineffective, that they give false hope and have potential to harm the child. We discuss the implications for this in terms of the importance of an open dialogue between professionals and families and consider the importance of this in relation to the popularity of these interventions. [ABSTRACT FROM PUBLISHER]

Leadership has been proposed as a key latent factor influencing the safety culture of an organization, the likelihood of errors occurring and the way in which these are managed. Therefore, when an error occurs, managers have an integral role to ensure that the most desirable outcomes are achieved for patients, health-care staff and their organization. Semistructured interviews were conducted in a large UK teaching hospital to explore the perspectives of staff who are tasked in some way with managing patient safety. Data from 26 transcripts were analysed using an adapted version of Spencer's (2003) qualitative framework, which revealed five primary themes. This paper reports findings from two overarching primary themes, described as being management and safety subcultures. These themes describe experiences of managing medical errors and the subgroup variations between professions, ranks and specialties in attitudes and behaviours towards error, and its management in a large National Health Service Trust. We discuss implications for health-care managers and health professionals in developing a stronger and more unified safety culture in their organizations, along with considerations for academic researchers when undertaking health services research. [ABSTRACT FROM AUTHOR]

Objectives: To understand the challenges and opportunities associated with the introduction of assistant practitioner (AP) roles supporting the work of ward-based registered nurses (RNs) in National Health Service (NHS) acute hospital trusts in England. Methods: Three case studies of NHS acute hospital trusts. This paper presents qualitative findings, drawing on documentary data sources and data generated through interviews and focus group discussions. Results: Introduction of APs into ward-based nursing teams has been variable, and often driven by external pressures rather than perceived organizational need. This, along with little national guidance, has created some confusion about the role, but at the same time has permitted flexible role development through 'negotiated compromise' at local level. While there are various areas of potential improvement in policy and practice, APs are generally perceived to have the potential to make a valuable contribution to patient care. Conclusions: Findings from this study will help policy-makers, organizations and practitioners understand factors that enable and/or inhibit the integration of new assistant roles within existing occupational structures to develop innovative services and enhance patient care. These factors are important when considering how care will be delivered to maximize the skills of the entire nursing workforce. [ABSTRACT FROM AUTHOR]

Palliative care exists in a variety of settings and palliative care teams form many guises within this. A Palliative Medicine Outpatient Clinic (PMOC) exists to meet the flexible provision of the needs and preferences of individuals within whatever care setting they reside. This explorative study used a qualitative methodology, capturing patients’ actual experience of care in preference to their satisfaction, as this is a more accurate measure of how and what patients judge as important in their healthcare. The overall themes in this paper point to the ‘value’ that patients perceived from attending the PMOC and how important the clinics were to clinicians that provided the care. The clinic facilitates much more than symptom control and here lies the challenge in how we convert the very positive experience of individuals into a language of outcome measures that captures the ‘essence’ of our work in this fiscally driven health economy. [ABSTRACT FROM AUTHOR]

Background: The ethnic density effect describes a phenomenon whereby adverse mental health outcomes among individuals from ethnic minorities are greater in neighbourhoods where they comprise a smaller proportion of the population. Most previous studies of the ethnic density effect have been quantitative in design, and thus have only been able to speculate on some of the underlying mechanisms explaining this phenomenon. Aims: This paper attempts to remedy this deficit, using in-depth qualitative methodology to explore mechanisms underlying the ethnic density effect. Methods: We chose an inner-London electoral ward, Gospel Oak, with a relatively low proportion of ethnic minorities, as a case study. Thirty-two residents, eight of whom were from minority ethnic groups, participated in either focus groups or in-depth interviews. We also conducted participant observation and collected relevant quantitative data. Results: We found four principal overlapping mechanisms that may help to explain why minorities living in predominantly white electoral wards may have greater risk of adverse mental health outcomes. These were perceived exclusion from local networks, a need to rely on geographically dispersed culturally specific services and facilities, perceived risk of physical and psychological intimidation and damaging effects of everyday racism. Conclusions: These mechanisms are presented as a framework, grounded in a qualitative case study, which can be applied in future study. They may help to explain the causes behind the ethnic density effect on mental health although further research in other settings is necessary in order to test the framework's external validity. [ABSTRACT FROM AUTHOR]

Background: There have been several reports of inequalities for ethnic minoritised service users across National Health Service mental health services in the United Kingdom. This research aims to explore the perspectives and experiences of young people from ethnic minoritised groups accessing psychological therapy in a National Specialist Child and Adolescent Mental Health Service in England. Method: Semi-structured interviews were conducted to investigate how young people perceived their ethnicity and how it was considered during psychological therapy. Nine young people were interviewed, and a thematic analysis was conducted. Results: Qualitative analysis revealed five themes: (1) adolescence, ethnicity, and identity; (2) ethnicity as a meaningful part of the therapeutic intervention; (3) therapeutic alliance to facilitate dialogue; (4) aversion to ethnicity exploration; and (5) treading lightly: a fine line between sensitive and overly cautious. Conclusions: The study illustrated the complexity of considering ethnicity in therapy due to conflicting views and preferences and the need for further research. [ABSTRACT FROM AUTHOR]

Background: Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. Aim: This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice. Study design: A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England. Results: Three themes ('overlooked', 'disjointed care' and 'awareness and expertise') were identified. Patients with chronic obstructive pulmonary disease are a 'forgotten about' population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning. Conclusions: Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care. [ABSTRACT FROM AUTHOR]

Background: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children’s palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. Aim: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what ‘good’ palliative care is. Design: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. Setting/participants: Participants were parents of children and young people (aged 0–17 years) in England, who were receiving palliative care, and parents whose child had died. Results: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children’s hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. Conclusions: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care. [ABSTRACT FROM AUTHOR]

Background and Aims: Survey research indicates that autistic children and young people experienced high levels of anxiety and isolation during lockdowns in response to the coronavirus disease 2019 (COVID-19) pandemic. Meanwhile, qualitative studies suggest that there may have been some benefits in the switch to home learning for this population. However, the majority of evidence to date comes from parent reports; the current study aimed to triangulate the perspectives of autistic youth and their parents in order to more fully understand the impact of periods of lockdown on education, relationships, and wellbeing. Methods: Thirteen semistructured interviews were conducted (six with adolescents, seven with parents) to explore the experiences of a group of autistic youth aged 13–14 years (Year 9 of mainstream education in England) during a period of intermittent lockdown. Data were analysed using reflexive thematic analysis. Results: Two broad themes capturing commonality and diversity in the adolescents' experiences of lockdown were developed. (1) "Different stress, not less stress" encapsulates the finding that, despite the enforced removal from the school environment providing short-term relief, new stressors contributed to consistently high levels of anxiety for the young people throughout lockdown periods. Stressors included managing home-school within the family unit, navigating time without boundaries, and anxiety about the virus. (2) "A shrunken world" reflects the heightened impact of losing access to meaningful social relationships, extracurricular pursuits, and health-promoting activities for autistic youth. Discussion: The early stages of the global response to the COVID-19 pandemic caused serious disruption to education for many children and young people globally,;our findings provide further evidence that the impact was particularly salient for autistic youth in terms of social isolation, lost learning, and heightened anxiety. Implications: These findings underscore the necessity of long-term support for the education, social needs, and mental health of autistic young people in the aftermath of lockdowns in response to COVID-19. [ABSTRACT FROM AUTHOR]

Background: Support from social networks is vital after the death of a partner. Lesbian, gay, bisexual and/or transgender (LGBT+) people can face disenfranchisement and isolation in bereavement. The Acceptance-Disclosure Model (of LGBT+ bereavement) posits that experiences are shaped by the extent to which individuals feel able to disclose their bereavement to others, and whether that loss is acknowledged appropriately. Aim: To explore LGBT+ specific experiences of partner bereavement; determine decision-making processes regarding disclosure of relationships/identities; and appraise the Acceptance-Disclosure Model using primary qualitative data. Design: Exploratory in-depth qualitative interview study positioned within a social constructivist paradigm. Data were analysed using inductive and deductive reflexive thematic analysis. Setting/participants: 21 LGBT+ people from across England bereaved of their civil partner/spouse. Results: Participants described LGBT+ specific stressors in bereavement: lack of recognition of their loss; inappropriate questioning; unwanted disclosure of gender history; and fears of discrimination when accessing support. Disclosure of LGBT+ identities varied across social networks. Some participants described hiding their identities and bereavement to preserve relationships, and challenging intersections between LGBT+ identities and other aspects of culture or self. These findings provide primary evidence to support the Acceptance-Disclosure Model. Conclusions: LGBT+ people face additional stressors in bereavement. Not all LGBT+ people want to talk directly about their relationships/identities. Sensitive exploration of support needs, aligned with preferences around disclosure of identities, can help foster trust. Five recommendations for inclusive practice are presented. Further research should consider whether the Acceptance-Disclosure Model has utility to explain bereavement experiences for other isolated or disenfranchised groups. [ABSTRACT FROM AUTHOR]

Objective To explore the experience of training and performing self-needling from both the practitioners' and patients' perspective. Methods A qualitative study was conducted using focus groups and interviews, nested within our multi-site randomised controlled trial, Acupuncture for Cancer-Related Fatigue in Patients with Breast Cancer. Patients allocated to self-needling across two UK study sites and all therapists who were involved in the trial were invited to participate. The interviews/focus groups were then transcribed verbatim and analysed thematically by the process of content analysis. Results Of the 67 eligible patients, 8 (12%) contributed to the focus groups and 15 practitioners (100%), contributed to the study by either attending a focus group or being interviewed. Themes identified for patients included: the allocation to self-needling, teaching techniques and practical considerations and whether they would self-needle again. Themes identified for practitioners included: views on self-needling, teaching self-needling and future implications of self-needling. Conclusions Self-needling was found to be acceptable to, and manageable by, patients, and enthusiastically adopted by most practitioners. Methods of teaching self-needling need to be developed and evaluated with guidelines recommended for best practice. [ABSTRACT FROM AUTHOR]

Objectives: Health policy and funding initiatives have addressed increasing workloads in general practice through the deployment of clinicians from different disciplinary backgrounds. This study examines how general practices in England operate with increasingly diverse groups of practitioners. Methods: Five general practices were selected for maximum variation of the duration and diversity of skill-mix in their workforce. Individual interviews were recorded with management and administrative staff and different types of practitioner. Patient surveys and focus groups gathered patients' perspectives of consulting with different practitioners. Researchers collaborated during coding and thematic analysis of transcripts of audio recordings. Results: The introduction of a wide range of practitioners required significant changes in how practices dealt with patients requesting treatment, and these changes were not necessarily straightforward. The matching of patients with practitioners required effective categorization of health care patients' reported problem(s) and an understanding of practitioners' capabilities. We identified individual and organizational responses that could minimize the impact on patients, practitioners and practices of imperfections in the matching process. Conclusions: The processes underpinning the redistribution of tasks from GPs to non-GP practitioners are complex. As practitioner employment under the Primary Care Network contracts continues to increase, it is not clear how the necessarily fine-grained adjustments will be made for practitioners working across multiple practices. [ABSTRACT FROM AUTHOR]

Objective: Major system change can be stressful for staff involved and can result in 'subtractive change' – that is, when a part of the work environment is removed or ceases to exist. Little is known about the response to loss of activity resulting from such changes. Our aim was to understand perceptions of loss in response to centralization of cancer services in England, where 12 sites offering specialist surgery were reduced to four, and to understand the impact of leadership and management on enabling or hampering coping strategies associated with that loss. Methods: We analysed 115 interviews with clinical, nursing and managerial staff from oesophago-gastric, prostate/bladder and renal cancer services in London and West Essex. In addition, we used 134 hours of observational data and analysis from over 100 documents to contextualize and to interpret the interview data. We performed a thematic analysis drawing on stress-coping theory and organizational change. Results: Staff perceived that, during centralization, sites were devalued as the sites lost surgical activity, skills and experienced teams. Staff members believed that there were long-term implications for this loss, such as in retaining high-calibre staff, attracting trainees and maintaining autonomy. Emotional repercussions for staff included perceived loss of status and motivation. To mitigate these losses, leaders in the centralization process put in place some instrumental measures, such as joint contracting, surgical skill development opportunities and trainee rotation. However, these measures were undermined by patchy implementation and negative impacts on some individuals (e.g. increased workload or travel time). Relatively little emotional support was perceived to be offered. Leaders sometimes characterized adverse emotional reactions to the centralization as resistance, to be overcome through persuasion and appeals to the success of the new system. Conclusions: Large-scale reorganizations are likely to provoke a high degree of emotion and perceptions of loss. Resources to foster coping and resilience should be made available to all organizations within the system as they go through major change. [ABSTRACT FROM AUTHOR]

Objectives: There is a lack of research informing service delivery for older forensic mental health patients. This study explored service provision in forensic mental health inpatient and community services in England, investigating what is required for progress in terms of quality of life, health, wellbeing, recovery and reduced risk, and the barriers and facilitators associated with this. Methods: Semi-structured interviews were undertaken with 48 members of staff working with older forensic mental health patients in secure inpatient units or the community in England. Data were analysed using thematic analysis. Results: Two global themes 'What works' and 'What doesn't work' were identified comprising themes representing environmental, interpersonal and individual factors. 'What works' included: positive social support and relationships; individualised holistic patient-centred care; hub and spoke approach to patient care; and suitable environments. 'What doesn't work' included: absence of/or maladaptive relationships with family and friends; gaps in service provision; and unsuitable environments. Conclusions: For older patients to progress to improved quality of life, health, wellbeing and reduced risk, multilevel and comprehensive support is required, comprising a range of services, interventions, and multidisciplinary input, and individualised to each patient's needs. The physical environment needs to be adapted for older patients and provide a social environment that seeks to include supportive families, friends and expert professional input. A clear patient progression pathway is required; this must be reflected in policy and provision. [ABSTRACT FROM AUTHOR]

Introduction: The social-emotional impacts of Developmental Coordination Disorder (DCD) for children and young people (CYP) are often the most disabling. Occupational therapists (OTs) have a central role in facilitating holistic service provision for this population. There is a need to understand OTs' perceptions regarding provision of support for the social-emotional needs of CYP with DCD. Method: A focus group (n = 9) explored issues pertaining to OT support for the social-emotional needs of this population. Qualitative data were analysed through collaborative coding, organization and reorganization following the classic analysis strategy. Results: Findings suggest that social-emotional support is not explicitly addressed in service provision for CYP with DCD. It appears that OTs know what needs to happen to improve social-emotional outcomes, and have made some progress, but more remains to be done. Holistic service provision depends upon varied factors, many of which are outside individual therapists' control. Conclusion: In England, OTs working with CYP with DCD may be providing services in settings not geared to supporting social-emotional needs. This raises concerns as to whether practitioners are enabled to stay true to holistic principles, as well as concerns related to delivering evidence-based practice in light of growing evidence regarding this population's social-emotional risks. [ABSTRACT FROM AUTHOR]

Alcoholics Anonymous (AA) is an NGO designed to support anyone who identifies as alcoholic to stop drinking alcohol. Existing qualitative research in this field has primarily reflected the experiences of those who have conformed to AA ideology and had positive experiences in AA. To address this, the current study aimed to explore the perspectives and experiences of individuals who have left AA with some degree of disappointment. The study involved semi-structured interviews with 11 ex-members of AA from America, Australia, and England, who were recruited from several private social media platforms. The study used an interactionist conception of social career involving conversion and deconversion, and data were analyzed thematically. Findings included that while participants experienced some genuinely positive aspects of AA, they retrospectively believed that they remained in AA because they had been indoctrinated into a particular way of understanding themselves. Moreover, findings highlighted participants' concerns with the people, ideology and practices within AA that ultimately led to their dissociation from the community. Our findings demonstrate a disparity between the idealistic principles in AA and the actual experiences of participants, and this is discussed in relation to the breadth of possible experiences across varying groups and AA's unregulated peer-to-peer framework. [ABSTRACT FROM AUTHOR]

Background: More people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services. Aim: To explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/Participants: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life. Results: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy. Conclusions: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained. [ABSTRACT FROM AUTHOR]

Background: the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of countries and increased emphasis is placed upon the role of generalist palliative care. However, little is known as to how this policy is enacted on the ground.Aim: to explore understandings of, and perceived roles in relation to, palliative care provision amongst generalist and specialist health care providers in England and New Zealand.Design: qualitative data were collected via individual interviews and focus groups.Setting/participants: participants comprised generalist and specialist palliative care providers working in a variety of settings in England (n = 58) and New Zealand (n = 80).Results: the following issues with significant implications for this new phase of development for palliative care were identified: (1) difficulties with terminology and perceived roles/responsibilities; (2) problems of integrating palliative care into a generalist workload; (3) challenges in generalist/specialist partnership working; and (4) the potential negative consequences of specialization.Conclusions: these data indicate that, within England and New Zealand, the policy rhetoric of universal palliative care provision is not being straightforwardly translated into service delivery and individual clinical practice. Further research is required to explore and evaluate different models of organization and service provision that empower ‘generalists’ to provide palliative care, without resulting in deskilling. Finally, definitional clarity at an academic/policy level is also needed. [ABSTRACT FROM PUBLISHER]

Objectives: A participatory qualitative study exploring women's experiences of ageing with HIV in London, United Kingdom. The research considered how the concept of 'community' was relevant to women's experiences and what constructions of 'community' could be discerned in the experiences, accounts given and discourses employed by older women living with HIV. Methods: The research presented in this article was conducted as a PhD study between 2015 and 2019. The study was structured in multiple and overlapping phases, and adopted a feminist and participatory approach. The methods used in the research were as follows: participatory literature review, participatory creative workshops, policy review and stakeholder interviews, life story interviews, and a participatory analysis workshop. Results: Eighteen women living with HIV aged over 50 participated in creative workshops and fourteen women in life story interviews. Women's experiences of ageing with HIV are shaped by intersecting identities, community responses, and personal connections. Ageing with HIV brings challenges, added to and augmented by other difficulties women face in their lives, but women draw on individual and community assets in order to adapt, cope and thrive. Belonging to a community of women living with HIV and a broader community of people living with HIV created a vital space of safety, in which women found support, advice, and meaning. Conclusions: Women ageing with HIV countered the 'violence of invisibility' through forming community with other women living with HIV, rejecting stigma, and enacting a personal form of advocacy through care for others. [ABSTRACT FROM AUTHOR]

Objective: A major issue facing all health systems is improving population health while at the same time responding to both growing patient numbers and needs and developing and retaining the health care workforce. One policy response to workforce shortages has been the development of advanced clinical practice roles. In the context of an English national policy promoting such roles in the health service, we explored senior managers' and senior clinicians' perceptions of factors at the organization level that support or inhibit the introduction of advanced clinical practice roles. The investigation was framed by theories of the diffusion of innovation and the system of professions. Methods: We conducted a qualitative interview study of 39 senior manager and clinicians in 19 National Health Service acute, community, mental health and ambulance organizations across a metropolitan area in 2019. Results: Small numbers of advanced clinical practice roles were reported, often in single services. Four main influences were identified in the development of advanced clinical practice roles: staff shortages (particularly of doctors in training grades) combined with rising patient demand, the desire to retain individual experienced staff, external commissioners or purchasers of services looking to shape services in line with national policy, and commissioner-funded new roles in new ambulatory care services and primary care. Three factors were reported as enabling the roles: finance for substantive posts, evidence of value of the posts, and structural support within the organization. Three factors were perceived as inhibiting developing the roles: confusion and lack of knowledge amongst clinicians and managers, the availability of finance for the roles, and a nervousness (sometimes resistance) to introducing the new roles. Conclusions: While the national policy was to promote advanced clinical practice roles, the evidence suggested there was and would continue to be limited implementation at the operational level. Development scenarios that introduced new monies for such roles reduced some of the inhibiting factors. However, where the introduction of roles required funding to move from one part of a service to another, and potentially from one staff group to another, the growth of these roles was and is likely to be contested. In such scenarios, research and business evidence of relative advantage will be important, as too will be supporters in powerful positions. The paucity of publicly available evidence on the effectiveness of advanced clinical practice roles across the specialties and professions in different contexts requires urgent attention. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore the experiences and perceived impact of the COVID-19 lockdowns among early adolescents in the northwest of England, as well as explore the self-care and coping strategies that helped the young people continue to thrive. Fourteen adolescents, 9 boys and 5 girls, were recruited from four secondary schools in North West England. Remote online interviews were conducted. Inductive reflexive thematic analysis was used to analyse the interview data and four themes were identified: (1) change: 'life feels weird'; (2) embracing lockdown; (3) feelings of loss; and (4) stress, worry and challenge. Processes identified will be able to help inform policy and practice for supporting adolescents in the future, including the promotion of positive coping strategies and the provision of resources for young people, schools and families. [ABSTRACT FROM AUTHOR]

Background: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. Aim: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. Design: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. Setting/participants: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. Findings: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. Conclusions: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making. [ABSTRACT FROM AUTHOR]