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Creating a learning health system could help reduce variations in quality of care. Success is dependent on timely access to health data. To explore the barriers and facilitators to timely access to patients’ data, we conducted in-depth semi-structured interviews with 37 purposively sampled participants from government, the NHS and academia across Scotland. Interviews were analysed using the framework approach. Participants were of the view that Scotland could play a leading role in the exploitation of routine data to drive forward service improvements, but highlighted major impediments: (i) persistence of paper-based records and a variety of information systems; (ii) the need for a proportionate approach to managing information governance; and (iii) the need for support structures to facilitate accrual, processing, linking, analysis and timely use and reuse of data for patient benefit. There is a pressing need to digitise and integrate existing health information infrastructures, guided by a nationwide proportionate information governance approach and the need to enhance technological and human capabilities to support these efforts. [ABSTRACT FROM AUTHOR]

Background Children's second-hand smoke (SHS) exposure in the home is highest in socio-economically disadvantaged areas. Personalized household air-quality measurements can promote changes in smoking that reduce SHS exposure. The 'First Steps 2 Smoke-free' (FS2SF) intervention is the first to trial this approach delivered as part of health professionals' routine work. This paper reports the findings of qualitative interviews with participants that explored their experiences of the intervention and why outcomes varied. Methods 120 women were recruited from the NHS First Steps Programme, which supports disadvantaged mothers. They received either personalized feedback on their home air quality and advice on reducing SHS or standard SHS advice. Qualitative interviews with 15 mothers were analyzed thematically using the Capability, Opportunity, Motivation, Behaviour (COM-B) model. Results The intervention increased women's capability to change home-smoking behaviour, through increasing awareness and salience of SHS risks to their children, and motivation to act. However, taking effective action was constrained by their limited social and environmental opportunities, including others' smoking in the home. Conclusions The FS2SF intervention was ineffective as it was unable to fully address the precarious, complex life circumstances that make creating a smoke-free home particularly difficult for women experiencing intersecting dimensions of disadvantage. [ABSTRACT FROM AUTHOR]

Aim To review strategies for successful recruitment in small-scale, qualitative research in primary care by exploring those used in a variety of settings and providing a reflective analysis of the strategies used in one such study. Background Recruitment of participants in small-scale, qualitative research in primary care is problematic. Researchers need to be more aware of the issues involved, but there is little practical guidance available to help them devise efficient strategies for maximising recruitment. Data sources This paper draws on a study conducted in the Highlands of Scotland examining the emotional wellbeing of pregnant and non-pregnant women. This was a qualitative study using diaries and interviews over a period of nine months. Ten women were recruited over a period of more than two years. Review methods The author reviews the strategies for successful recruitment based on both a review of the available literature as well as the experience of one study. Discussion Recruitment of subjects to a study is one of the major elements of a research proposal and requires significant effort, yet there is little to guide researchers through this difficult process. The challenge of recruitment is seldom debated and studies rarely report problems encountered or outline approaches that proved particularly successful. The importance of successful recruitment is discussed and the arguably typical recruitment difficulties encountered by researchers conducting a study in the Highlands of Scotland are outlined. The elements that comprised successful recruitment in this and other studies are appraised. Conclusion Although focused specifically on recruitment in small-scale, qualitative studies in primary care, this paper raises broader issues about the recruitment of participants in all types of research. Recruitment has implications for the trustworthiness and dependability of the data and hence the findings of research. Despite this, there remains a lack of evidence about what enhances research recruitment, leaving researchers to rely on guesswork and anecdotes. In a climate of evidence-based practice, researchers should be encouraged to include a formal evaluation of recruitment strategies in their studies and to report their findings. Implications for practice/research As recruitment has implications for the trustworthiness and dependability of research, researchers need to consider a wide range of recruitment strategies and include a formal evaluation of their recruitment strategies when reporting on their research. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Background: Paediatric palliative medicine (PPM) is a holistic approach to care for children and their families. Services are growing and developing worldwide but significant disparity in service provision remains. The Paediatric Supportive and Palliative Care Team (PSPCT) at the Royal Hospital for Children in Glasgow was established in 2019, but there is still no clear integrated role within the paediatric intensive care unit (PICU) at present. Through analysing the attitudes, meaning, knowledge and understanding of PPM in the PICU environment, we hoped to explore the experiences of those providing paediatric palliative care and to identify any barriers to or facilitators of integrated working to gain a better understanding of providing this care. Methods: This qualitative study used a survey composed of five open-ended and five closed questions. Sixteen out of a possible thirty-two responses (50%) were accrued from PICU healthcare professionals, including consultants (n = 19), advanced nurse practitioners (n = 4) and band-seven nurses (n = 9). The data were comprehensively studied and analysed by two coders using summative content analysis with assistance from data management software. Codes were further developed to form categories and subcategories. Results: Two categories were found: (1) the role of palliative care and (2) experiences of providing palliative care. A total of five subcategories were found, demonstrating that the PSPCT can enhance care in PICU through collaborative working. Barriers identified included staffing, funding and stigma around palliative care. Conclusions: This study shows that PICU professionals have a good understanding of the concepts of PPM and view it as an essential part of PICU work. Barriers related to resources and misperceptions of palliative care can be overcome through improved education, funding and staff retention, but this would require buy-in from policymakers. The perspective from our relatively small team increases generalizability to growing teams across the country. [ABSTRACT FROM AUTHOR]

Background: The introduction of screening in the UK and other high‐income countries led to a significant decrease in the incidence of cervical cancer and increase in survival rates. Minority ethnic groups are often underrepresented in screening participation for reasons that are poorly understood. Objective: To explore experiences of cervical screening participation and non‐participation of women from minority ethnic populations in Scotland and gain insights to support the development of interventions that could potentially support screening participation and thereby reduce inequalities. Design: Qualitative comparison group study using in‐depth, semi‐structured individual interviews that were thematically analysed. Setting and participants: This study took place in Scotland. Fifty women were purposively sampled from four ethnic minority groups: South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed. Results: Many experiences described were common regardless of ethnicity, such as difficulties managing competing priorities, including work and care responsibilities. However, important differences existed across the groups. These included going abroad for more frequent screening, delayed introduction to screening and not accessing primary care services, language difficulties in health‐care settings despite proficiency in English and not being sexually active at screening commencement. Experiences of racism, ignorance and feeling shamed were also reported. Conclusions: Key differences exist in the experience of minority ethnic groups in Scotland. These offer potential opportunities to reduce disparity and support screening participation including maximizing co‐incidental interactions and developing outreach work. [ABSTRACT FROM AUTHOR]

Background: Cancer is rare amongst adolescents and young adults (AYA). Previous research has reported (healthy) AYA's knowledge of risk factors and symptoms as limited, with this potentially leading to delays in help‐seeking and diagnosis. Objectives: We explored AYA's views on their cancer knowledge prior to diagnosis and if/how they perceived this as having affected their experiences of diagnosis and care. Methods: We interviewed 18 AYA diagnosed with cancer (aged 16‐24 years). Interviews were recorded and transcribed verbatim. We undertook qualitative descriptive analysis, exploring both a priori topics and emergent themes, including cancer knowledge prior to diagnosis. Results: Adolescents and young adults characterized their knowledge of cancer and treatment prior to diagnosis and treatment initiation as limited and superficial. AYA perceived gaps in their knowledge as having profound consequences throughout their cancer journey. These included: hindering recognition of symptoms, thereby delaying help‐seeking; impeding understanding of the significance of tests and referrals; amplifying uncertainty on diagnosis; and affording poor preparation for the harsh realities of treatment. Conclusions: Adolescents and young adults perceived their limited cancer knowledge prior to diagnosis as affecting experiences of diagnosis and initial/front‐line care. These findings prompt consideration of whether, when and how, AYA's knowledge of cancer might be improved. Two broad approaches are discussed: universal education on AYA cancer and/or health; and targeted education (enhanced information and counselling) at and after diagnosis. Patient or Public Contribution: Our work was informed throughout by discussions with an advisory group, whose membership included AYA treated for cancer. [ABSTRACT FROM AUTHOR]

Background Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. We aimed to explore the factors that influence hospital admission of care home residents who then died in hospital. Methods This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives. Results During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%. Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this. Conclusions Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes. [ABSTRACT FROM AUTHOR]

Increasing breastfeeding rates would improve maternal and child health, but multiple barriers to breastfeeding persist. Breast pump provision has been used as an incentive for breastfeeding, although effectiveness is unclear. Women's use of breast pumps is increasing and a high proportion of mothers express breastmilk. No research has yet reported women's and health professionals' perspectives on breast pumps as an incentive for breastfeeding. In the Benefits of Incentives for Breastfeeding and Smoking cessation in pregnancy (BIBS) study, mixed methods research explored women's and professionals' views of breast pumps as an incentive for breastfeeding. A survey of health professionals across Scotland and North West England measured agreement with ‘a breast pump costing around £40 provided for free on the NHS’ as an incentive strategy. Qualitative interviews and focus groups were conducted in two UK regions with a total of 68 participants (pregnant women, new mothers, and their significant others and health professionals) and thematic analysis undertaken. The survey of 497 health professionals found net agreement of 67.8% (337/497) with the breast pump incentive strategy, with no predictors of agreement shown by a multiple ordered logistic regression model. Qualitative research found interrelated themes of the ‘appeal and value of breast pumps’, ‘sharing the load’, ‘perceived benefits’, ‘perceived risks’ and issues related to ‘timing’. Qualitative participants expressed mixed views on the acceptability of breast pumps as an incentive for breastfeeding. Understanding the mechanisms of action for pump type, timing and additional support required for effectiveness is required to underpin trials of breast pump provision as an incentive for improving breastfeeding outcomes. © 2016 The Authors. Maternal & Child Nutrition published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]

Background Looked after young people (LAYP) have poorer sexual health outcomes than their peers. However, research seldom examines the health needs of, or intervenes with, this group. The aim of the current study was to identify LAYP's perceived sexual health needs and explore sources of sexual health information, knowledge levels, concerns and service preferences. Methods Looked after young people within Fife, Scotland, were recruited through their workers and carers to participate in qualitative semi-structured interviews. Those aged 12–19 years were targeted for recruitment. National Health Services ethics approval was granted. Thematic analysis was conducted using NVivo. Results Interviews were conducted with 10 LAYP. Key themes included gaps in knowledge, and gaps between knowledge and behaviour. Being ‘looked after’ may have negative consequences on knowledge, sources of support and safer sex. A flexible, one-to-one service, aimed at several lifestyle issues, not solely sexual health, was preferred by respondents. Conclusion Looked after young people require support to bridge the gap between knowledge and behaviour and several theories relevant to the findings have been identified. Participants desired more support around a range of health issues, which may come from school, workers and carers, as well as health professionals. Further research examining effective interventions with this group is crucial to improve outcomes. [ABSTRACT FROM PUBLISHER]