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Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Methods: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention. Results: Nineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Conclusions: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population. Patient or Public Contribution: Three patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

Objectives: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. Methods: Forty‐six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. Results: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. Discussion: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home. Key points: Neighbourhoods begin within homes and are interconnected. This relationship has important implications for the discourse of ageing in place.'Home' for people living with dementia holds the same meanings for those without dementia, but with some notable differences. It is important to recognise the shifting dynamics of home and to recognise the complexity of home in the context of dementia. There is not a fixed solution to the challenges of ageing at home with dementia, but support and understanding need to evolve alongside people with lived experience.Homes are a site of renegotiation where new meanings are created to reflect the changing nature of home and the lived experience of home for those with dementia.The study has provided findings through innovation in the research design. The employment of creative methods enabled people living with dementia to participate in sharing their own narratives of home.The work provides evidence where there is a current gap in understanding 'what matters' about home for people living with dementia. [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]

Aims: To evaluate whether adding financial incentives to usual care is cost‐effective in encouraging pregnant women to quit tobacco smoking, compared with usual care alone. Design: Cost‐effectiveness analysis (CEA) and cost–utility analysis (CUA) from a health‐care provider's perspective, embedded in the Smoking Cessation in Pregnancy Incentives Trial (CPIT III). Long‐term analyses were conducted from the same perspective, using an existing Markov model over a life‐time horizon. Setting: Seven maternity smoking cessation sites in Scotland, England and Northern Ireland in the United Kingdom. Participants: In the short‐term analysis, CPIT III participants were assessed: women 16 years or older, self‐reporting as smokers, fewer than 24 weeks pregnant and English‐speaking (n = 944). The same population was used for the life‐time analysis, plus their infants. Measurements Costs included financial incentive vouchers and postage, cessation support and nicotine replacement therapy and neonatal stays. The outcome measure was a biochemically verified quit rate for the CEA and quality‐adjusted life‐years (QALYs) for CUA. Costs are presented in 2020 GBP sterling (£). Data for the life‐time analysis came from the trial and were combined with data from published literature embedded in the model, reporting incremental cost per quitter and QALY. A 3.5% discount rate was applied. Findings The short‐term incremental cost per quitter was £4400 and cost per QALY was £150 000. Results of sensitivity analyses confirmed these results. The long‐term analysis combined costs and outcomes for mother and infants; results showed a cost saving of £37 [95% confidence interval (CI]) = £35–106] and increase in QALYs of 0.171 (95% CI = 0.124–0.229). These findings indicate that, over a life‐time, financial incentives are cost‐saving and improve health outcomes. Conclusions: In the United Kingdom, offering up to £400 financial incentives, in addition to usual care, to support pregnant women to stop smoking appears to be highly cost‐effective over a life‐time for mother and infants. [ABSTRACT FROM AUTHOR]

Background: There is increasing interest in the assessment of health‐related quality of life (QoL) in the care of patients treated with home parenteral nutrition (HPN). However, it is not known whether healthcare professionals (HCPs) have embedded QoL assessment into routine clinical practice in line with current guidelines to favour a more holistic approach to HPN care. The aim of this study was to assess knowledge, current practice and the opinions of HCPs regarding QoL in care of patients on HPN. Methods: An online survey was distributed via email to HCPs working with HPN patients throughout England, Scotland, Wales and Northern Ireland. Participants were identified using a mailing list for the British Intestinal Failure Alliance, a specialist group within the British Association for Parenteral and Enteral Nutrition. Results: The survey was completed by 67 professionals comprising 24 dietitians, 17 nurses, 14 gastroenterologists, 6 pharmacists, 5 surgeons and 1 psychologist. Of these, 54 (80%) participants agreed that the measurement of QoL is useful. In contrast, 38 (57%) of all participants, including 27 (50%) of those participants who agreed that the measurement of QoL was useful, never measured QoL. Knowledge of QoL literature was rated as poor or very poor by 27 (40%) participants. Conclusions: Despite the perceived usefulness and importance of QoL assessment, very few HCPs embed it into clinical practice. Knowledge of QoL literature and QoL tools is variable, and there is significant variability in QoL practice. This is clear in terms of the frequency of QoL assessments and heterogeneity in methodology. In contrast, there was almost unanimous agreement that the complications associated with HPN contribute to poorer QoL. There is a need for specific, evidence‐based, clinical practice guidelines detailing how to define and measure QoL in this patient population. Key points: There is significant variability in quality‐of‐life (QoL) practice for patients treated with home parenteral nutrition (HPN).Our findings suggest that very few healthcare professionals are embedding QoL assessment into clinical practice.Evidently, there appears to be a need for specific, evidence‐based, clinical practice guidelines detailing how to define and measure QoL in HPN patients. [ABSTRACT FROM AUTHOR]

Introduction: The COVID‐19 pandemic had an unprecedented effect on those living and working in care‐homes for older people, as residents were particularly vulnerable to contracting the SARS‐CoV‐2 virus, associated with high morbidity and mortality. Often undervalued, care‐home nurses (RNs) are leaders, managing complex care while working in isolation from their professional peers. The pandemic made this more apparent, when care and treatments for COVID‐19 were initially unknown, isolation increased due to withdrawal of many professional health services, accompanied by staff shortages. Objective: To explore RNs' experiences of working in older people's care‐homes during the COVID‐19 pandemic. Design: Qualitative interview study. Setting: Care‐homes for older people in England and Scotland, UK. Methods: Recruitment via direct contact with care‐homes, social media, and links provided by national partners, then purposive sampling for age, gender, type of care‐home, and location. Data collected through one‐to‐one online interviews using topic guide developed collaboratively with care‐home nurses, focusing on how COVID‐19 impacted on nurses' resilience and mental wellbeing. Data analyzed thematically using Tronto's ethics of care framework to guide development of interpretative themes. Results: Eighteen nurses (16 female; 16 adult, and two mental health nurses) were interviewed March–June 2021; majority aged 46–55 years; mean time registered with Nursing and Midwifery Council: 19 years; 17 had nursed residents with COVID‐19. RNs' experiences resonated with Tronto's five tenets of ethical care: attentiveness, responsibility, competence, responsiveness, and solidarity. All nurses described being attentive to needs of others, but were less attentive to their own needs, which came at personal cost. RNs were aware of their professional and leadership responsibilities, being as responsive as they could be to resident needs, processing and sharing rapidly changing guidance and implementing appropriate infection control measures, but felt that relatives and regulatory bodies were not always appreciative. RNs developed enhanced clinical skills, increasing their professional standing, but reported having to compromise care, leading to moral distress. Broadly, participants reported a sense of solidarity across care‐home staff and working together to cope with the crisis. Conclusion: Care‐home nurses felt unprepared for managing the COVID‐19 pandemic, many experienced moral distress. Supporting care‐home nurses to recover from the pandemic is essential to maintain a healthy, stable workforce and needs to be specific to care‐home RNs, recognizing their unique pandemic experiences. Support for RNs will likely benefit other care‐home workers either directly through wider roll‐out, or indirectly through improved wellbeing of nurse leaders. Clinical relevance: The COVID‐19 pandemic, an international public health emergency, created many challenges for Registered Nurses (RNs) working in long‐term care facilities for older people, as residents were particularly vulnerable to the impact of the SARS‐CoV‐2 virus. Care‐home RNs faced challenges distinct from their hospital‐based nursing peers and non‐nursing social care colleagues due to their isolation, leadership roles, professional legal obligations, and ethical responsibilities, leading to psychological distress on the one hand, but also a newly found confidence in their existing and newly developed skills, and increased recognition by the wider health community of their specialisms. [ABSTRACT FROM AUTHOR]

Aims: To develop a questionnaire to identify Intensive Care survivor needs at key transitions during the recovery process, and assess its validity and reliability in a group of ICU survivors. Methods: Development of the Support Needs After ICU (SNAC) questionnaire was based on a systematic scoping review, and analysis of patient interviews (n = 22). Face and content validity were assessed by service users (n = 12) and an expert panel of healthcare professionals (n = 6). A pilot survey among 200 ICU survivors assessed recruitment at one of five different stages after ICU discharge [(1) in hospital, (2) < 6 weeks, (3) 7 weeks to 6 months, (4) 7 to 12 months, or (5) 12 to 24 months post‐hospital discharge]; to assess reliability of the SNAC questionnaire; and to conduct exploratory data analysis. Reliability was determined using Cronbach's alpha for internal consistency; intraclass correlation coefficients for test–retest reliability. We explored correlations with sociodemographic variables using Pearson's correlation coefficient; differences between questionnaire scores and patient demographics using one‐way ANOVA. Results: The SNAC questionnaire consisted of 32 items that assessed five categories of support needs (informational, emotional, instrumental [e.g. practical physical help, provision of equipment or training], appraisal [e.g. clinician feedback on recovery] and spiritual needs). ICU survivors were recruited from Northern Ireland, England and Scotland. From a total of 375 questionnaires distributed, 202 (54%) were returned. The questionnaire had high internal consistency (0.97) and high test–retest reliability (r = 0.8) with subcategories ranging from 0.3 to 0.9. Conclusions: The SNAC questionnaire appears to be a comprehensive, valid, and reliable questionnaire. Further research will enable more robust examination of its properties e.g. factor analysis, and establish its utility in identifying whether patients' support needs evolve over time. Relevance to clinical practice: The SNAC questionnaire has the potential to be used to identify ICU survivors' needs and inform post‐hospital support services. [ABSTRACT FROM AUTHOR]