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Background: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life‐limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. Methods: We undertook a UK‐based interview study with 35 individuals, including: 7 people living with genetically‐mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. Results: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open‐ended, tailored support and information provision. Conclusions: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken‐for‐granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public‐facing resource on the healthtalk.org website. Patient or Public Contribution: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel. [ABSTRACT FROM AUTHOR]

Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]

Introduction: People who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency services and is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment. Methods: We used a two‐stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third‐sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results. Results: People said they make frequent calls to emergency ambulance services as a last resort when they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers. Conclusion: People who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users' motivations and requirements to inform design and delivery of accessible and effective services. Patient or Public Contribution: People with relevant experience were involved in developing, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production with communities is increasingly seen as best practice that can improve the quality, relevance and effectiveness of research and service delivery. Despite this promising position, there remains uncertainty around definitions of co‐production and how to operationalize it. The current paper describes the development of a co‐production strategy to guide the work of the ActEarly multistakeholder preventative research programme to improve children's health in Bradford and Tower Hamlets, UK. Methods: The strategy used Appreciative Inquiry (AI), an approach following a five‐step iterative process: to define (Step 1) scope and guide progress; to discover (Step 2) key issues through seven focus groups (N = 36) and eight in‐depth interviews with key stakeholders representing community groups, and the voluntary and statutory sectors; to dream (Step 3) best practice through two workshops with AI participants to review findings; to design (Step 4) a co‐production strategy building on AI findings and to deliver (Step 5) the practical guidance in the strategy. Results: Nine principles for how to do co‐production well were identified: power should be shared; embrace a wide range of perspectives and skills; respect and value the lived experience; benefits should be for all involved parties; go to communities and do not expect them to come to you; work flexibly; avoid jargon and ensure availability of the right information; relationships should be built for the long‐term; co‐production activities should be adequately resourced. These principles were based on three underlying values of equality, reciprocity and agency. Conclusion: The empirical insights of the paper highlight the crucial importance of adequate resources and infrastructure to deliver effective co‐production. This documentation of one approach to operationalizing co‐production serves to avert any misappropriations of the term 'co‐production' by listening to service users, stakeholders and other relevant groups, to develop trust and long‐term relationships, and build on the learning that already exists amongst such groups. Patient or Public Contribution: The work was overseen by a steering group (N = 17) of individuals, both professional and members of the public with experience in undertaking co‐production, and/or with some knowledge of the context of the two ActEarly field sites, who provided regular oversight and feedback on the AI process. [ABSTRACT FROM AUTHOR]

Introduction: A range of nonpharmaceutical public health interventions has been introduced in many countries following the rapid spread of Covid‐19 since 2020, including recommendations or mandates for the use of face masks or coverings in the community. While the effectiveness of face masks in reducing Covid‐19 transmission has been extensively discussed, scant attention has been paid to the lived experience of those wearing face masks. Method: Drawing on 40 narrative interviews with a purposive sample of people in the United Kingdom, with a particular focus on marginalised and minoritized groups, our paper explores experiences of face mask use during the pandemic. Results: We find that face masks have a range of societal, health and safety impacts, and prompted positive and negative emotional responses for users. We map our findings onto Lorenc and Oliver's framework for intervention risks. We suggest that qualitative data offer particular insights into the experiences of public health interventions, allowing the potential downsides and risks of interventions to be more fully considered and informing public health policies that might avoid inadvertent harm, particularly towards marginalised groups. Patient or Public Contribution: The study primarily involved members of the public in the conduct of the research, namely through participation in interviews (email and telephone). The conception for the study involved extensive discussions on social media with a range of people, and we received input and ideas from presentations we delivered on the preliminary analysis. [ABSTRACT FROM AUTHOR]

Introduction: A person‐centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relatively close relationships between carers and people living with HIV (PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carers and the emergence of 'relational traumatic growth' opportunities. Methods: Twenty‐two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. Results: The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deaths and the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaning and managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. Conclusion: The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). Patient or Public Contribution: People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Although breastfeeding is known to improve health, economic and environmental outcomes, breastfeeding initiation and continuation rates are low in the United Kingdom. The global WHO/UNICEF Baby Friendly Hospital Initiative (BFHI) aims to reverse declining rates of breastfeeding by shifting the culture of infant feeding care provision throughout hospital maternity settings. In the United Kingdom, the global BFHI has been adapted by UNICEF UK reflecting a paradigm shift towards the experiences of women and families using maternity services. This research used a critical ethnographic approach to explore the influence of the national UNICEF UK Baby Friendly Initiative (BFI) standards on the culture of one typical maternity service in England, over a period of 8 weeks, across four phases of data collection between 2011 and 2017. Twenty‐one staff and 26 service users were recruited and engaged in moderate‐level participant observation and/or guided interviews and conversations. Basic, organising and a final global theme emerged through thematic network analysis, describing the influence of the BFI on providing, receiving and leading infant feeding care in a hospital maternity setting. Using Antonovsky's sense of coherence construct, the findings discussed in this paper highlight how the BFI offers 'informational' (comprehensible), 'practical' (manageable) and 'emotional' (meaningful) support for both staff and service users, strengthened by effective, local leadership and a team approach. This is juxtaposed against the tensions and demands of the busy hospital maternity setting. It is recommended that ongoing infant feeding policy, practice and leadership balance relational and rational approaches for positive infant feeding care and experiences to flourish. [ABSTRACT FROM AUTHOR]

Context The National Institute for Health and Care Excellence ( NICE) has an explicit mandate to include patient and public involvement in the appraisal of medicines to be available for funding on the NHS. NICE involves an appraisal committee who are required to take on board experiential evidence from patient experts alongside population-based evidence on clinical and cost-effectiveness when making a decision whether to fund a drug. Objective This paper considers how NICE Single Technological Appraisal ( STA) committees attempt to incorporate the views of patients in making decisions about funding medicines on the NHS. Methods A prospective design was employed to follow three pharmaceutical products involving three different appraisal committees. Three data collection methods were used: analysis of documentary evidence sent by NICE, non-participant unstructured observations of the open and closed sessions of meetings and qualitative interviews. Settings and participants Unstructured non-participant observations were carried out at nine STA meetings, and 41 semi-structured interviews were undertaken with committee members from NICE's STA committees, patient experts, analysts from NICE's project team and drug manufacturers. Results Our analysis showed how the committees displayed a preference for an ideal-type of patient representative, disagreement among the committee when weighing-up patient statements in the STA process and more pre-preparation support for patient involvement. Conclusions Although NICE has attempted to adopt an approach flexible to patients and carers through formal decision-making arrangements that incorporate patient views, nonetheless, the processes of the STAs can in fact undermine the very evidence collected from patient representatives. [ABSTRACT FROM AUTHOR]

Background Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. Objective To explore power relations in patient and public involvement ( PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Methods Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Findings Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Discussion and conclusions Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power. [ABSTRACT FROM AUTHOR]

Objective The importance of involving patients in reporting on safety is increasingly recognized. Whilst studies have identified barriers to clinician incident reporting, few have explored barriers and facilitators to patient reporting of safety experiences. This paper explores patient perspectives on providing feedback on safety experiences. Design/Participants Patients (n=28) were invited to take part in semi-structured interviews when given a survey about their experiences of safety following hospital discharge. Transcripts were thematically analysed using NVivo10. Setting Patients were recruited from four hospitals in the UK. Results Three themes were identified as barriers and facilitators to patient involvement in providing feedback on their safety experiences. The first, cognitive-cultural, found that whilst safety was a priority for most, some felt the term was not relevant to them because safety was the 'default' position, and/or because safety could not be disentangled from the overall experience of care. The structural-procedural theme indicated that reporting was facilitated when patients saw the process as straightforward, but that disinclination or perceived inability to provide feedback was a barrier. Finally, learning and change illustrated that perception of the impact of feedback could facilitate or inhibit reporting. Conclusions When collecting patient feedback on experiences of safety, it is important to consider what may help or hinder this process, beyond the process alone. We present a staged model of prerequisite barriers and facilitators and hypothesize that each stage needs to be achieved for patients to provide feedback on safety experiences. Implications for collecting meaningful data on patients' safety experiences are considered. [ABSTRACT FROM AUTHOR]

Background: Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health‐care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. Objectives: This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. Design: A prospective case study design, with an embedded qualitative evaluation of PIR activity. Setting and participants: Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Data collection: Qualitative data collection involved discussion groups, and site‐specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. Results: PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Discussion and conclusions: Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views. [ABSTRACT FROM AUTHOR]

Background Patient autonomy in antenatal screening is a high priority for policy developers in many countries. Objective This paper presents women's understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice. Design, setting and participants The study was carried out in 2009 in the UK, using a qualitative approach. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi-structured interviews, which were analysed using framework analysis. Results Four themes were identified during the analysis: 'Meanings of advice in antenatal screening: the advice continuum', 'Recognition of the role of health professionals in decision making', 'Understandings of advice in the context of autonomous decision making' and 'Reasons given for wanting advice'. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of 'advice' ranged from information giving only to direction about screening choices. Conclusion Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women's preference for care and adhere to a policy of non-directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices. [ABSTRACT FROM AUTHOR]

Breastfeeding is a practice which is promoted and scrutinized in the UK and internationally. In this paper, we use interpretative phenomenological analysis to explore the experiences of eight British first-time mothers who struggled with breastfeeding in the early post-partum period. Participants kept audio-diary accounts of their infant feeding experiences across a 7-day period immediately following the birth of their infant and took part in related semi-structured interviews a few days after completion of the diary. The overarching theme identified was of a tension between the participants' lived, embodied experience of struggling to breastfeed and the cultural construction of breastfeeding as 'natural' and trouble-free. Participants reported particular difficulties interpreting the pain they experienced during feeds and their emerging maternal identities were threatened, often fluctuating considerably from feed to feed. We discuss some of the implications for breastfeeding promotion and argue for greater awareness and understanding of breastfeeding difficulties so that breastfeeding women are less likely to interpret these as a personal shortcoming in a manner which disempowers them. We also advocate the need to address proximal and distal influences around the breastfeeding dyad and, in particular, to consider the broader cultural context in the UK where breastfeeding is routinely promoted yet often constructed as a shameful act if performed in the public arena. [ABSTRACT FROM AUTHOR]

Acculturating to a host country has a negative impact on immigrant women's breastfeeding practices, particularly when coming from countries where breastfeeding rates are higher than Western countries. Whether this is true of those immigrating to the UK remains to be investigated. The study aimed to explore whether acculturating to the UK had detrimental effects on breastfeeding practices of South Asian women, and to provide explanations as to how acculturation may have exerted its influence. Twenty South Asian women completed semi-structured interviews exploring infant feeding experiences. Data were thematically analysed. A bidimensional measure assessed women's acculturation status. Women displaying low acculturation levels were aware of living in a formula-feeding culture but this had little influence on breastfeeding intentions/behaviours; drawing upon South Asian cultural teachings of the psychological benefits of breast milk. These women opted to formula-feed in response to their child's perceived demands or in a bid to resolve conflict; either when receiving information about the best feeding method or between their roles as a mother and daughter-in-law. Highly acculturated women also experienced such conflict; their awareness of the formula-feeding culture governed feeding choice. The findings provide a picture of how acculturation may affect South Asian women's breastfeeding intentions and behaviours; encouraging health service providers to meet the varying needs of an acculturating population. If breastfeeding is to be encouraged, it is necessary to understand factors influencing feeding choice; with particular attention to the acculturation pathways that may govern such decisions. This paper highlights ways to tailor information for South Asian women depending on levels of acculturation. [ABSTRACT FROM AUTHOR]

This paper considers how work psychologists define 'good' qualitative research in the work psychology domain. In addressing the assessment of quality in work psychology research, we draw on 22 in-depth interviews with work psychologists about their current practices and expectations around qualitative research. Using narrative analysis, the various plots and narratives that constitute how interviewees understand good qualitative research are identified. The implications of the use of these narratives for both how quality is understood and the use of qualitative research in this area are addressed. Drawing on Weick's concept of sensemaking as a theoretical framework, it is argued that the narratives identified enable the construction of a hegemonic understanding of what is good methodological practice within the work psychology discipline. The implications of this for the work psychology field and the methodological practices of work psychologists are considered. [ABSTRACT FROM AUTHOR]

This paper explores the transition of talk to text in the process of performing and recording semi-structured interviews over the telephone. In particular, it considers the ways respondents and the materials enjoined in the process of interviewing exceed their role in the research process. Drawing on my experience of conducting telephone interviews in the UK, I position the interview as an uncertain encounter: one framed by earlier narrations as much as the aims and objectives of the research project; and an orientation towards ‘talk’ as much as the reduction of performance to text. Far from losing track of these uncertainties I argue that tape-recorders are well equipped to document these in/audible realms. [ABSTRACT FROM AUTHOR]

Objective To explore the roles of Patient Advice and Liaison Services (PALS) in their interactions with service users. Context Every National Health Service health-care provider in England now has a PALS, which provides service users with information and help in resolving concerns and dissatisfactions with health care. Design Longitudinal qualitative study, 2002–4. This paper draws on data from 27 semi-structured interviews. Setting and participants PALS personnel working in six case study PALS in London. Findings PALS personnel adopt seven roles in order to support their clients in sorting out problems with health care: information provider; listener; messenger (passing on information from service users to staff); go-between (passing information forward and back); supporter (helping service users to present their own views); mediator (when two or more parties are in dispute); resource mobilizer (when the support of senior staff or other agencies is necessary to resolve a problem). Conclusions Though these are not new functions, PALS is a universal service which is better placed than front-line health-care staff to offer such support, and increases choice for service users looking for sources of information and advice. [ABSTRACT FROM AUTHOR]