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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]

Background: As digital tools are increasingly used to support COVID‐19 contact tracing, the equity implications must be considered. As part of a study to understand the public's views of digital contact tracing tools developed for the national 'Test and Protect' programme in Scotland, we aimed to explore the views of groups often excluded from such discussions. This paper reports on their views about the potential for contact tracing to exacerbate inequalities. Methods: A qualitative study was carried out; interviews were conducted with key informants from organizations supporting people in marginalized situations, followed by interviews and focus groups with people recruited from these groups. Participants included, or represented, minority ethnic groups, asylum seekers and refugees and those experiencing multiple disadvantage including severe and enduring poverty. Results: A total of 42 people participated: 13 key informants and 29 members of the public. While public participants were supportive of contact tracing, key informants raised concerns. Both sets of participants spoke about how contact tracing, and its associated digital tools, might increase inequalities. Barriers included finances (inability to afford smartphones or the data to ensure access to the internet); language (digital tools were available only in English and required a degree of literacy, even for English speakers); and trust (many marginalized groups distrusted statutory organizations and there were concerns that data may be passed to other organizations). One strength was that NHS Scotland, the data guardian, is seen as a generally trustworthy organization. Poverty was recognized as a barrier to people's ability to self‐isolate. Some participants were concerned about giving contact details of individuals who might struggle to self‐isolate for financial reasons. Conclusions: The impact of contact tracing and associated digital tools on marginalized populations needs careful monitoring. This should include the contact tracing process and the ability of people to self‐isolate. Regular clear messaging from trusted groups and community members could help maintain trust and participation in the programme. Patient and Public Contribution: Our patient and public involvement coapplicant, L. L., was involved in all aspects of the study including coauthorship. Interim results were presented to our local Public and Patient Involvement and Engagement Group, who commented on interpretation and made suggestions about further recruitment. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to uncover perspectives on the COVID‐19 pandemic and the responses implemented by the UK and Scottish Governments to help control the spread of infection. Such understanding could help to inform future responses to pandemics at individual, community and national levels. Method: Q methodology was used to elicit perspectives from people in England and Scotland with different experiences of the pandemic including public health officials, key workers, those on furlough, those who were unvaccinated or vaccinated to different levels, those who were 'shielding' because they were at higher risk and people with different scientific expertise. Participants rank‐ordered phrases about different aspects of COVID‐19 according to their viewpoint. Factor analysis was then conducted in conjunction with interview material from the same respondents. Results: A four‐factor solution was statistically supported and was interpretable alongside the qualitative accounts of participants loading on these factors. These four perspectives are titled Dangerous and Unaccountable Leadership, Fear and Anger at Policy and Public responses, Governing Through a Crisis and Injustices Exposed. Conclusion: The four perspectives demonstrate plurality and nuance in views on COVID‐19 and the associated policies and restrictions, going beyond a binary narrative that has been apparent in popular and social media. The four perspectives include some areas of common ground, as well as disagreement. We argue that understanding the detail of different perspectives might be used to build cohesion around policy initiatives in future. Patient or Public Contribution: The development of the statement set, which is rank‐ordered by participants in a Q study, and factor interpretations were informed by views of the general public. The statement set was initially developed using existing publicly available material based on members of the general public experiencing the pandemic first hand. It was then piloted with members of the public experiencing different challenges as a result of COVID‐19 and the subsequent lockdown and updated based on feedback. Finally, interpretations of the identified factors were presented publicly and edited according to their feedback. [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: As most young teenagers grow up in families, parents might be well situated to facilitate and support their weight management and thereby prevent or manage obesity prior to adulthood. Aim: This paper explores parents' perceptions of, and views about, their teenage children's weight and the factors that influence parents' weight management strategies. Design, setting and participants: We conducted two qualitative studies in Scotland, UK, involving in‐depth interviews with the parents of overweight/obese and ‘normal’ weight 13–15 year olds (n = 69). Findings: Parents' concerns about their own weight provided useful context for understanding their attitudes or actions with regards to their teenage child. Some parents described their teenager's weight as being of concern to them, although puberty often introduced confusion about a child's weight status. Genetic explanations were very often put forward as a way of making sense of teenage weight or body size. Frustration about advising teenagers about weight management was expressed, and some parents worried about giving their growing child a ‘problem’ if they directly raised concerns about weight with them. Discussion: Parents' views about their own weight as well as social and moral norms about labelling a teenager as overweight or as needing help with their weight could usefully inform patient‐centred service development. Parent/teenage partnerships and supporting parents to create a healthy home in which teenagers can make healthier choices are suggestions for intervention development. Conclusion: The study highlights the importance of taking parents' perceptions into account when developing family‐based interventions to address teenage overweight and obesity. [ABSTRACT FROM AUTHOR]

Objective This paper describes a prospective study of women’s views and experiences of maternity services. The aim was to examine the way women make choices and decisions about maternity care and the factors which influence decision making, with a view to developing services which best meet the needs of the population. Patient choice issues reviewed included: choice of place of birth, choice of lead professional and choices in labour management. Design, setting and participants A cohort of women attending maternity booking clinics, within the catchment area of Peterhead Maternity Unit (PMU) in north-east Scotland, were surveyed by means of postal questionnaires at three stages during their contact with maternity services. A subset of women also took part in in-depth interviews. Results Not all women were given information about all the available options for place of birth and many women were unclear of the differences between them. Factors influencing choice of place of birth can change, with the medical aspects of maternity care becoming more important as the pregnancy progresses. Women rated the importance of seeing the same staff at antenatal visits highly, but were less concerned with their ability to choose which professional to see. More importance was attached to being able to choose a particular midwife rather than a particular obstetrician. Women’s choices with regard to labour management were largely met. Insufficient information, however, was provided about choices in pain relief. Conclusions The survey revealed the importance of locally based research, involving all stakeholders, in developing services which best meet the needs of a population. [ABSTRACT FROM AUTHOR]

Background: The Scottish Government introduced a free Baby Box scheme for all new parents in 2017, modelled on the Finnish scheme, to give every baby 'an equal start in life'. There is little evidence that it results in better health outcomes, but there has been limited research into different perspectives and discourses on such schemes. Methods: Four focus groups were conducted with 21 parents in North‐East Scotland. Recordings were transcribed verbatim, anonymized and analysed thematically with NVivo 12 software. Our thematic analysis was both inductive and deductive—remaining open to themes identified by participants themselves but also informed by the social policy literature on universalism and social cohesion. Results: Across all the focus groups, we found a high degree of positivity about the principle of the Baby Box scheme, and for the most part the practical value of the contents. This was remarkably consistent across different communities and backgrounds. There was little evidence of the strongly polarized views present in media reporting. Parents seemed considerably less focused than the media on safety and health outcomes, and more focused on practical, material and social impacts. They reported little in the way of feeling patronized or monitored by the government. Conclusion: Our findings have important implications for future economic evaluations of the baby box. Such evaluations should broaden the valuation space beyond health outcomes to allow for the value of feelings of inclusion, solidarity and being part of a community. Patient or Public Contribution: This small project was designed in response to parent views already collected in the early roll‐out of the Baby Box scheme in Scotland, about their priorities and responses to the scheme. Additional views were sought on the topic guide for the focus groups, and local community groups advised us on recruitment and the best timing and location for the focus groups to be held. The focus groups themselves were conducted as research, but with the intent of ensuring parent views featured more prominently in a debate that has been largely dominated by clinical and public health perspectives. [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: Rural health outcomes are often worse than their urban counterparts. While rural health theory recognizes the importance of the social determinants of health, there is a lack of insight into public perspectives for improving rural health beyond the provision of health‐care services. Gaining insight into perceived solutions, that include and go beyond health‐ care, can help to inform resource allocation decisions to improve rural health. Objective: To identify and describe shared perspectives within a remote‐rural community on how to improve rural health. Method: Using Q methodology, a set of 40 statements were developed representing different perceptions of how to improve rural health. Residents of one remote‐rural island community ranked this statement set according to their level of agreement. Card‐sorts were analysed using factor analysis to identify shared points of view and interpreted alongside post‐sort qualitative interviews. Results: Sixty‐two respondents participated in the study. Four shared perspectives were identified, labelled: Local economic activity; Protect and care for the community; Redistribution of resources; and Investing in people. Factors converged on the need to relieve poverty and ensure access to amenities and services. Discussion and conclusions: Factors represent different elements of a multifaceted theory of rural health, indicating that 'lay' respondents are capable of comprehending various approaches to health improvement and perspectives are not homogenous within rural communities. Respondents diverged on the role of individuals, the public sector and 'empowered' community‐based organizations in delivering these solutions, with implications for policy and practice. Public Contribution: Members of the public were involved in the development and piloting of the statement set. [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]

Abstract: Background: Colorectal cancer (CRC) screening programmes using a guaiac faecal occult blood test (gFOBt) reduce CRC mortality. Interval cancers are diagnosed between screening rounds: reassurance from a negative gFOBt has the potential to influence the pathway to diagnosis of an interval colorectal cancer. Methods: Twenty‐six semi‐structured face‐to‐face interviews were carried out in Scotland and England, with individuals diagnosed with an interval colorectal cancer following a negative gFOBt result. Results: Participants reported they were reassured by a negative gFOBt, interpreting their result as an “all clear”. Therefore, most did not suspect cancer as a possible cause of symptoms and many did not recall their screening result during symptom appraisal. Among those who did consider cancer, and did think about their screening test result, reassurance from a negative gFOBt led some to “downplay” the seriousness of their symptoms with some interviewees explicitly stating that their negative test result contributed to a delayed decision to seek help. Conclusion: Screening participants need to be informed of the limitations of screening and the ongoing risk of developing colorectal cancer even when in receipt of a negative result: the importance of minimizing delay in seeking medical advice for colorectal symptoms should be emphasized. [ABSTRACT FROM AUTHOR]

The article presents the study on the interaction of family-clinicians on the outcome of children's health services through the analysis of occupational therapists' practice. Qualitative analysis was designed and categorized the practice action into ranges of participatory and relational family-centered interactions through modified framework analysis. Results were outlined and conclude the frequency between participatory and relational interactions among therapists and family-clinicians.

Background Little is known about peoples' self-management experiences and their desires or expectations to engage in self-management. As such, there is little understanding about individuals' perceived cues and barriers to engagement in self-management, particularly in people affected by cancer. Objective To understand cues and barriers to people's engagement in self-management during chemotherapy treatment for colorectal cancer. Design Secondary analysis of qualitative data from mixed methods, longitudinal study. Setting and participants Eleven participants undergoing treatment for colorectal cancer. Semi-structured interviews were conducted twice with each participant, at the start and end of a 6-month course of chemotherapy treatment in a Scottish cancer centre. Results Cues and barriers to engagement in self-management appeared to stem from perceptions of the impact and associated severity of side effects experiences as well as the perceptions about the efficacy of chosen self-management activities and perceptions of control in minimizing the consequences of cancer treatment. Severe, episodic or unexpected side effects coupled with perceptions of uncertainty, lack of control and lack of adequate preparation to engage in self-management were identified as key barriers to engagement. Discussion and conclusion Participants' reflection on, or appraisal of, their treatment-related experiences and personal abilities, confidence and preferences to manage the impact of these shaped their subsequent engagement in self-management. The findings highlight the importance of understanding individual's self-management experiences, perceptions, preferences, priorities and needs to help support, prepare and enable them to feel capable and confident to engage actively and effectively in self-management. [ABSTRACT FROM AUTHOR]

Background Empirical research suggests that involving carers brings benefits to families and services. Consequently, drug-related policy and guidance has increasingly encouraged drug services to involve carers at all levels of service provision. Objective To explore the purpose and scope of carer involvement with adult drug services in North-east Scotland. Design, Setting and Participants A total of 82 participants (20 informal carers, 43 service providers and 19 policy makers) were purposively selected to take part in a qualitative study. Eight focus groups and 32 interviews were conducted between 2007 and 2008. Findings Three themes were identified through thematic coding: 'Current levels of involvement', 'Use of the term carer' and 'Opportunities for change?' Carer involvement was described as limited, unplanned and unstructured, and consisted largely of information and advice, practical and emotional support, and signposting of services. Although use of the term 'carer' was contested within and across the groups, caring in a drug context was considered the 'same but different' from caring in other contexts. Carers remained sceptical that services actually wanted to involve them in supporting their relative or to offer carers support in their own right. Many service providers and policy makers regarded carer involvement as an aspiration. Conclusion Encouraging carers, service providers and policy makers to reach a shared understanding of caring in a drug context may help translation of policy into practice. However, there is also a fundamental need for drug services to widen the level and type of involvement activities on offer to carers. [ABSTRACT FROM AUTHOR]

Background Socioeconomically deprived women are at greater risk of adverse pregnancy outcomes. Research tends to focus on access of services. Yet access may not equate with the equity of services for women from different socioeconomic backgrounds. Objectives To determine whether pregnant women's perceptions of antenatal provision differed in relation to their socioeconomic deprivation ranking (determined by the Scottish Index of Multiple Deprivation 2006). Design A longitudinal, qualitative study with comparative antenatal case studies between January 2007 and April 2009. Setting/Participants Cases were primigravida women from 'least deprived' ( n = 9) and 'most deprived' ( n = 12) geographical areas within one local authority in Scotland. Analysis Data were analysed using case study replication analysis. Results There was little difference in access to antenatal services between the 'least' and 'most' deprived groups. Perception of care differed in relation to the level of 'engagement' (defined using constructs of: language and personalization of care; power and relationships; and health literacy). Engagement was evidenced in most of the 'least deprived' cases and almost none of the 'most deprived' cases. Specifically, socioeconomically deprived women described less evidence of personal connection to their own care, effective communication and the opportunity for shared decision making. Conclusion In women from socioeconomically deprived areas, access may be a less useful indicator than engagement when assessing antenatal service quality. As engagement levels may be one method by which to predict and improve health outcomes, a more equitable antenatal service may need to be developed through the early identification of those women at risk of non-engagement. [ABSTRACT FROM AUTHOR]

Background Interest and investment in e-health continue to grow world-wide, but there remains relatively little engagement with the public on this subject, despite calls for more public involvement in health-care planning. Design This study used two modified citizen juries to explore barriers and facilitators to e-health implementation and the priorities for future e-health research from the perspective of health service users and lay representatives. Citizen juries bring together a group of people to deliberate over a specific issue. They are given information and invited to 'cross-examine' witnesses during the process. Results Jurors were very keen for lay views to be included in e-health development and embraced the citizen jury approach. They agreed unanimously that e-health should be developed and thought it was in many ways inevitable. Although there was much enthusiasm for a health-care system which offered e-health as an option, there was as much concern about what it might mean for patients if implemented inappropriately. E-health was preferred as an enhancement rather than substitute for, existing services. Lack of universal access was seen as a potential barrier to implementation but problems such as lack of computer literacy were seen as a temporary issue. Participants emphasized that e-health research needed to demonstrate both clinical and economic benefits. Conclusion There was broad support from the citizen juries for the development of e-health, although participants stressed that e-health should enhance, rather than substitute, face-to-face services. One-day citizen juries proved a practical method of public engagement on this subject. [ABSTRACT FROM AUTHOR]

Background Women with one previous caesarean section must decide which mode of delivery they would prefer in their next pregnancy. This involves a choice between attempted vaginal birth and elective caesarean section. Objective To explore women's mode of delivery preferences and the values placed on the outcomes of decision making. Greater insight into these issues could benefit both clinical care and future research. Design Observational study using longitudinal data collected within a randomized controlled trial. Setting and Participants Seven hundred and forty-two women with one previous caesarean section recruited at four antenatal clinics in South West England and Scotland. Main outcome measures Mode of delivery preference recorded at 19 and 37 weeks' gestation and visual analogue scale ratings of health and delivery outcomes. Results Comparison of mid and late pregnancy preferences and actual mode of delivery shows that 57% of women hold the same mode of delivery preferences at both times and 65% of women actually have the birth they prefer. The visual analogue scale ratings show variation in the way women value the outcomes of the decision. Discussion and Conclusions Understanding the way women's mode of delivery preferences change, how these relate to actual mode of delivery and how women value the outcomes of their decision will be beneficial to health professionals who wish to support women both during pregnancy and after birth. In addition, the visual analogue scale ratings provide evidence that may improve the development of population-level and economic models of decision making. [ABSTRACT FROM AUTHOR]