Can routine data be used to estimate the mental health service use of children and young people living on Gypsy and Traveller sites in Wales? A feasibility study.

INTRODUCTION: Gypsies and Travellers have poorer physical and mental health than the general population, but little is known about mental health service use by Gypsy and Traveller children and young people. Finding this group in routine electronic health data is challenging, due to limited recording of ethnicity. We assessed the feasibility of using geographical markers combined with linked routine datasets to estimate the mental health service use of children and young people living on Traveller sites. METHODS: Welsh Government supplied a list of Traveller site postcodes included in Caravan Counts between 2012 and 2020. Using spatial filtering with data from the Adolescent Mental Health Data Platform (ADP) at Swansea University's SAIL Databank, we created a cohort of Traveller site residents aged 11-25 years old, 2010-2019. ADP algorithms were used to describe health service use, and to estimate incidence and prevalence of common mental disorders (CMD) and self-harm. RESULTS: Our study found a subgroup of young Gypsies and Travellers (n = 802). We found no significant differences between our cohort and the general population for rates of CMD or self-harm. The rate of non-attendance for psychiatric outpatient follow-up appointments was significantly higher in our cohort. Rates were higher (but not statistically significant) among Gypsies and Travellers for measures suggesting less well-managed care, including emergency department attendance and prescribed CMD medication without follow-up. The small size of the cohort resulted in imprecise estimates with wide confidence intervals, compared with those for the general population. CONCLUSIONS: Gypsies and Travellers are under-represented in routine health datasets, even using geographical markers, which find only those resident in authorised traveller sites. Routine data is increasingly relied upon for needs assessment and service planning, which has policy and practice implications for this underserved group. To address health inequalities effort is required to ensure that health datasets accurately capture ethnicity.

Neuropilin-1 cooperates with PD-1 in CD8+ T cells predicting outcomes in melanoma patients treated with anti-PD1.

Targeting immune checkpoints, such as Programmed cell Death 1 (PD1), has improved survival in cancer patients by restoring antitumor immune responses. Most patients, however, relapse or are refractory to immune checkpoint blocking therapies. Neuropilin-1 (NRP1) is a transmembrane glycoprotein required for nervous system and angiogenesis embryonic development, also expressed in immune cells. We hypothesized that NRP1 could be an immune checkpoint co-receptor modulating CD8+ T cells activity in the context of the antitumor immune response. Here, we show that NRP1 is recruited in the cytolytic synapse of PD1+CD8+ T cells, cooperates and enhances PD-1 activity. In mice, CD8+ T cells specific deletion of Nrp1 improves anti-PD1 antibody antitumor immune responses. Likewise, in human metastatic melanoma, the expression of NRP1 in tumor infiltrating CD8+ T cells predicts poor outcome of patients treated with anti-PD1. NRP1 is a promising target to overcome resistance to anti-PD1 therapies.

Public involvement in participatory research: the experiences of peer interviewers from Roma, Gypsy and Traveller communities.

BACKGROUND: A vital component of research is patient and public involvement (PPI). The challenges of PPI increase when conducting cross-cultural research into sensitive subjects with marginalised ethnic minority groups. AIM: To present the authors' reflections on conducting peer interviews with members of Roma, Gypsy and Traveller communities. DISCUSSION: The authors provide examples of reflections on collecting data from a participatory research project that explored Gypsies, Roma and Travellers' experiences of cancer in their communities. They derived the reflections from audio-recorded, post-interview debriefs with co-researchers from the same ethnic backgrounds as interviewees ('peer researchers'). The main challenges for the peer researchers were cultural, linguistic and pragmatic, all fundamentally related to exploring a sensitive health topic through the lens of ethnicity. CONCLUSION: Peer researchers recognised their role in building bridges between participants and the research team. They did this by establishing a relationship of trust, minimising distress, representing the views of their communities and obtaining data to meet the aims of the project. Peer researchers perform multiple roles to assist in cross-cultural data collection in participatory research. IMPLICATIONS FOR PRACTICE: This article highlights underexplored aspects of peer researchers' work that have implications for the planning and conduct of cross-cultural research with marginalised groups.

Cancer diagnosis, treatment and care: A qualitative study of the experiences and health service use of Roma, Gypsies and Travellers.

BACKGROUND: Early diagnosis and treatment are key to reducing deaths from cancer, but people from Black and Minority Ethnic (BME) groups are more likely to encounter delays in entering the cancer care system. Roma, Gypsies and Travellers are ethnic minorities who experience extreme health inequalities. OBJECTIVE: To explore the experiences of cancer diagnosis, treatment and care among people who self-identify as Roma or Gypsies and Travellers. METHODS: A participatory qualitative approach was taken. Peer researchers conducted semi-structured interviews (n = 37) and one focus group (n = 4) with community members in Wales and England, UK. RESULTS: Cancer fatalism is declining, but Roma, Gypsies and Travellers experience barriers to cancer healthcare at service user, service provider and organisational levels. Communication was problematic for all groups, and Roma participants reported lack of access to interpreters within primary care. Clear communication and trusting relationships with health professionals are highly valued and most frequently found in tertiary care. CONCLUSION: This study suggests that Roma, Gypsies and Travellers are motivated to access health care for cancer diagnosis and treatment, but barriers experienced in primary care can prevent or delay access to diagnostic and treatment services. Organisational changes, plus increased cultural competence among health professionals, have the potential to reduce inequalities in early detection of cancer.

Knowledge and experience of cancer prevention and screening among Gypsies, Roma and Travellers: a participatory qualitative study.

BACKGROUND: The incidence of cancer is increasing worldwide, which has led to greater public health focus on primary prevention. Ethnic minorities have lower awareness of cancer risk factors and services, and are at greater risk of cancer mortality. While Gypsies, Roma and Travellers have poor health outcomes even in comparison with other ethnic minorities, little is known about how they view and enact primary prevention. This study takes a participatory approach to explore knowledge and experience of cancer prevention and screening in these communities. METHODS: Peer researchers conducted interviews (n = 37) and a focus group (n = 4) with a purposive sample of community members in Wales and South-West England. Participants self-identified as Roma (from Slovakia and Romania) or as Gypsies, Travellers or Showpeople (here described as Gypsy/Travellers). A third of the sample were Roma, and a quarter male, with ages ranging from 18 to 77 years. Data were collected from October 2018 to March 2019. RESULTS: Women and men knew that lifestyle factors, such as healthy diet, stopping smoking, drinking less alcohol and using sun protection, contribute to cancer risk reduction. However, there was a widespread lack of confidence in the effectiveness of these measures, particularly in relation to smoking. Traditional cultural beliefs were shared by Roma and Gypsy/Travellers, but did not necessarily affect the behaviour of individuals. Most women participated in cervical and breast screening but few Gypsy/Traveller men would engage with bowel screening, which conflicted with community ideals of stoical masculinity. Roma participants described language barriers to screening, with confusion about differences in timing and eligibility between the UK and Slovakian programmes; this led some to access screening abroad. CONCLUSION: This study provides new knowledge about how Gypsies, Roma and Travellers keep healthy and prevent disease, giving insights into similarities and differences between ages, sexes and communities. These culturally distinct and high-need ethnic minorities have specific needs in relation to cancer prevention and screening, which merit targeted and acceptable health promotion to reduce health inequalities.

Improving immunization uptake rates among Gypsies, Roma and Travellers: a qualitative study of the views of service providers.

BACKGROUND: Gypsies, Roma and Travellers are at risk of low uptake of routine immunizations. Interventions to improve uptake in these communities are seldom evaluated. As part of a qualitative study exploring barriers and facilitators to immunization uptake in Travellers, we report service provider (SP) perspectives. METHODS: We interviewed immunization SPs working with six Traveller communities across four UK cities. Participants included frontline staff and those with strategic or commissioning roles. Semi-structured interviews explored perceived attitudes of Travellers to vaccinations, local service delivery, and opportunities and challenges to improving uptake. Audio-recordings were transcribed, analyzed thematically and mapped to a socio-ecological model of health. RESULTS: 39 SPs participated. Four overarching themes were identified: building trusting relationships between SPs and Travellers; facilitating attendance at appointments; improving record keeping and monitoring and responding to local and national policy change. Travellers were perceived as largely supportive of immunizations, though system and organizational processes were recognized barriers to accessing services. CONCLUSIONS: Findings were broadly consistent across Traveller groups and settings. The barriers identified could often be addressed within existing infrastructure, though require system or policy change. Development of a culturally competent system appears important to enable equity in access to immunizations for Travellers.

Identifying interventions with Gypsies, Roma and Travellers to promote immunisation uptake: methodological approach and findings.

BACKGROUND: In the UK, Gypsy, Roma and Traveller (GRT) communities are generally considered to be at risk of low or variable immunisation uptake. Many strategies to increase uptake for the general population are relevant for GRT communities, however additional approaches may also be required, and importantly one cannot assume that "one size fits all". Robust methods are needed to identify content and methods of delivery that are likely to be acceptable, feasible, effective and cost effective. In this paper, we describe the approach taken to identify potential interventions to increase uptake of immunisations in six GRT communities in four UK cities; and present the list of prioritised interventions that emerged. METHODS: This work was conducted in three stages: (1) a modified intervention mapping process to identify ideas for potential interventions; (2) a two-step prioritisation activity at workshops with 51 GRTs and 25 Service Providers to agree a prioritised list of potentially feasible and acceptable interventions for each community; (3) cross-community synthesis to produce a final list of interventions. The theoretical framework underpinning the study was the Social Ecological Model. RESULTS: Five priority interventions were agreed across communities and Service Providers to improve the uptake of immunisation amongst GRTs who are housed or settled on an authorised site. These interventions are all at the Institutional (e.g. cultural competence training) and Policy (e.g. protected funding) levels of the Social Ecological Model. CONCLUSIONS: The "upstream" nature of the five interventions reinforces the key role of GP practices, frontline workers and wider NHS systems on improving immunisation uptake. All five interventions have potentially broader applicability than GRTs. We believe that their impact would be enhanced if delivered as a combined package. The robust intervention development and co-production methods described could usefully be applied to other communities where poor uptake of immunisation is a concern. STUDY REGISTRATION: Current Controlled Trials ISRCTN20019630, Date of registration 01-08-2013, Prospectively registered.

'Differences between the earth and the sky': migrant parents' experiences of child health services for pre-school children in the UK.

AIM: To explore parents' experiences of using child health services for their pre-school children post-migration. BACKGROUND: Migrating between countries necessitates movement and adjustment between systems of healthcare. Children of migrants are known to have poorer health than local children on some measures and are less likely to access primary care. In the United Kingdom (UK), children are offered a preventive Healthy Child programme in addition to reactive services; this programme consists of health reviews and immunisations with some contacts delivered in the home by public health nurses. METHODS: Five focus groups were held in a city in South West England. Participants were parents of pre-school children (n = 28) who had migrated to the UK from Romania, Poland, Pakistan or Somalia within the last 10 years. Groups selected included both 'new migrants' (from countries which acceded to the European Union in the 2000s) and those from communities long-established in the UK (Somali and Pakistani). One focus group consisted of parents of Roma ethnicity. Interpreters co-facilitated focus groups. FINDINGS: Participants described profound differences between child health services in the UK and in their country of origin, with the extent of difference varying according to nationality and ethnic group. All appreciated services free at the point of delivery and an equitable service offered to all children. Primary care services such as treatment of minor illness and immunisation were familiar, but most parents expected doctors rather than nurses to deliver these. Proactive child health promotion was unfamiliar, and some perceived this service as intruding on parental autonomy. Migrants are not a homogenous group, but there are commonalities in migrant parents' experiences of UK child health services. When adjusting to a new healthcare system, migrants negotiate differences in service provision and also a changing relationship between family and state.

Promoting children's health when a parent has a mental health problem: a mixed methods study of the experiences and views of health visitors and their co-workers.

BACKGROUND: Unrecognised and untreated parental mental illness is a major adverse childhood experience with potentially life-long consequences for health and wellbeing. In the United Kingdom (UK) health visitors provide a universal health promotion service to children aged 0-5 years, which includes safeguarding. This preventive work is highly relevant to policy aims of improving outcomes for children living with adverse childhood experiences, but is currently under researched. The aim of this study was to explore how health visitors promote young children's wellbeing when a parent has a mental health problem, and to co-produce strategies to improve child health outcomes. METHODS: A mixed methods study was conducted, consisting of a cross-sectional survey and consensus workshops in Wales, UK. In phase 1 health visitors (n = 174) responded to an online questionnaire designed to explore the nature and scope of their preventive work with families experiencing mental ill health. For phase 2 providers of health and other support services (n = 38) took part in Nominal Group Technique workshops to co-produce strategies for better joint working to protect the wellbeing of children living with parental ill health. RESULTS: We identified that health visitors routinely provide support to families where parents have a range of mental health problems, including severe mental illness. Most practice is focused on mothers with depression, and fewer respondents were confident about working with fathers. Unmet training needs were identified in relation to adult mental illness, particularly the impact upon children. Solutions to working more effectively with professional and voluntary agencies included raising awareness of professional roles and responsibilities, timely two-way communication, taking a strengths-based approach and maintaining a focus on the child. CONCLUSIONS: This study provided evidence on the range of parental mental ill health encountered by health visitors and the strategies they use to protect children's wellbeing. Increasing the effectiveness of joint working is key to improving outcomes for babies and young children, including greater use of voluntary sector services. This study has implications for those who commission and provide health and welfare services for children, and adult mental health services.

Objective structured clinical exam: how clinical nurse educators can support internationally educated nurses.

Internationally educated nurses (IENs) require robust teaching programmes to support them through the objective structured clinical exam (OSCE) process to gain registration with the Nursing and Midwifery Council. There should be measures in place to support these nurses from a clinical and pastoral perspective. It is also important to learn from IENs, because moving to a different country is an emotional and life-changing experience that affects nurses and their families. Preparation is central to completing the programme successfully, alongside having the resources required in terms of time and a dedicated facility for practise. This article describes the development and implementation of an OSCE preparation teaching programme to support IENs, discusses the challenges for teachers and participants, and shows how having a dedicated facility and programme lead has led to excellent results.

Engaging Gypsy, Roma, and Traveller Communities in Research: Maximizing Opportunities and Overcoming Challenges.

Gypsy, Roma, and Traveller people are marginalized worldwide and experience severe health inequalities, even in comparison to other ethnic minority groups. While diverse and hard to categorize, these communities are highly cohesive and members have a strong sense of identity as a group apart from the majority population. Researchers commonly experience challenges in accessing, recruiting, and retaining research participants from these communities, linked to their outsider status, insular nature, and history of discrimination. In this article, the challenges and the opportunities of engaging Gypsies, Roma, and Travellers in a multicenter qualitative research project are discussed. The management of public involvement and community engagement in this U.K.-based project provides insights into conducting research effectively with ethnically and linguistically diverse communities, often considered to be "hard to reach."

The experiences of breastfeeding mothers returning to work as hospital nurses in Pakistan: A qualitative study.

BACKGROUND: Pakistan has a higher infant mortality rate than countries with comparable economies, with around half of all under-5 deaths occurring in the first month of life. Breastfeeding is known to improve infant morbidity and mortality, but rates of formula feeding in Pakistan are increasing. Maternal employment is recognised globally as a major barrier to the continuation of breastfeeding. AIM: To describe the attitudes and experiences of breastfeeding mothers returning to full-time work as nurses in a tertiary hospital in Pakistan. METHODS: A qualitative study was conducted using semi-structured interviews with seven purposively sampled participants who were breastfeeding at the time of return to work. Interviews were audio recorded, transcribed and analysed thematically. RESULTS: Three major themes were identified: belief in a child's right to breastfeed, conflict with institutional power and the importance of family support in maintaining breastfeeding. Antenatally mothers described breastfeeding as the preferred infant feeding option and the child's right. When returning to work mothers encountered rigid hospital policies and practices, such as a short and non-negotiable period of maternity leave, inflexible shift patterns, and lack of childcare provision. Parents' strategies to continue breastfeeding included some mothers bringing babies to hospital wards while they worked, and babies' fathers bringing the baby to the hospital for feeds. CONCLUSION: This study highlighted the barriers to breastfeeding experienced by mothers working as hospital nurses in Pakistan. Babies can be put at risk due to the strategies parents adopt to reconcile continued breastfeeding with maternal employment.

Improving the digital literacy competence of nursing and midwifery students: A qualitative study of the experiences of NICE student champions.

Developing competence in digital literacy is an important component of health professional education in order to increase confidence in accessing best evidence for clinical practice. Regulators of pre-registration nursing programmes in the UK have stipulated an increasing number of digital competencies that will be required by future nurses. The teaching of digital literacy skills may be achieved through a range of methods, including didactic, experiential and peer-taught approaches. The UK National Institute for Health and Care Excellence (NICE) have developed the NICE student champion scheme (NICE SCS) to train health care students to deliver digital literacy sessions on using the NICE Evidence Search engine to peers. This scheme has previously been evaluated from the perspective of medical and pharmacy students, but there has been no published evaluation of the experiences of nursing and midwifery students. In this study focus groups were used to explore the experiences of those who acted as NICE student champions. Findings were that student champions experienced benefits, which ranged from greater facility in using the search engine and a better understanding of accessing resources and information about evidence-based care. Student champions described improvements in their presentation skills and knowledge, despite some challenges in facilitating sessions.

Prudent healthcare in emergency departments: a case study in Wales.

To deliver a patient-centred service, emergency departments (EDs) must be efficient, effective and meet the needs of the local population. This article describes a service redesign of unscheduled care in a hospital in Wales, which followed the principles of prudent healthcare to improve patient experiences. Extending the roles of nurse specialist practitioners was a major component of the redesign. Six working groups were established to guide the process, one of which was responsible for working cooperatively with the local community, which was concerned about perceived 'downgrading' of the ED. The service redesign was completed in 2016 and evaluation shows the target for patients being seen in under four hours improved from 88% to 96%, significantly more acute medical admission patients were discharged in less than 24 hours, and patient satisfaction increased overall.

Needles, Jabs and Jags: a qualitative exploration of barriers and facilitators to child and adult immunisation uptake among Gypsies, Travellers and Roma.

BACKGROUND: Gypsies, Travellers and Roma (referred to as Travellers) are less likely to access health services including immunisation. To improve immunisation rates, it is necessary to understand what helps and hinders individuals in these communities in taking up immunisations. This study had two aims. 1. Investigate the views of Travellers in the UK on the barriers and facilitators to acceptability and uptake of immunisations and explore their ideas for improving immunisation uptake; 2. Examine whether and how these responses vary across and within communities, and for different vaccines (childhood and adult). METHODS: This was a qualitative, cross-sectional interview study informed by the Social Ecological Model. Semi-structured interviews were conducted with 174 Travellers from six communities: Romanian Roma, English Gypsy/Irish Travellers (Bristol), English Gypsy (York), Romanian/Slovakian Roma, Scottish Show people (Glasgow) and Irish Traveller (London). The focus was childhood and selected adult vaccines. Data were analysed using the Framework approach. RESULTS: Common accounts of barriers and facilitators were identified across all six Traveller communities, similar to those documented for the general population. All Roma communities experienced additional barriers of language and being in a new country. Men and women described similar barriers and facilitators although women spoke more of discrimination and low literacy. There was broad acceptance of childhood and adult immunisation across and within communities, with current parents perceived as more positive than their elders. A minority of English-speaking Travellers worried about multiple/combined childhood vaccines, adult flu and whooping cough and described barriers to booking and attending immunisation. Cultural concerns about antenatal vaccines and HPV vaccination were most evident in the Bristol English Gypsy/Irish Traveller community. Language, literacy, discrimination, poor school attendance, poverty and housing were identified as barriers across different communities. Trustful relationships with health professionals were important and continuity of care valued. CONCLUSIONS: The experience of many Travellers in this study, and the context through which they make health decisions, is changing. This large study identified key issues that should be considered when taking action to improve uptake of immunisations in Traveller families and reduce the persistent inequalities in coverage. TRIAL REGISTRATION: Current Controlled Trials ISRCTN20019630 .

UNderstanding uptake of Immunisations in TravellIng aNd Gypsy communities (UNITING): a qualitative interview study.

BACKGROUND: Gypsies, Travellers and Roma (referred to as Travellers) are less likely to access health services, including immunisation. To improve immunisation rates, we need to understand what helps and hinders individuals in these communities in taking up immunisations. AIMS: (1) Investigate the barriers to and facilitators of acceptability and uptake of immunisations among six Traveller communities across four UK cities; and (2) identify possible interventions to increase uptake of immunisations in these Traveller communities that could be tested in a subsequent feasibility study. METHODS: Three-phase qualitative study underpinned by the social ecological model. Phase 1: interviews with 174 Travellers from six communities: Romanian Roma (Bristol); English Gypsy/Irish Traveller (Bristol); English Gypsy (York); Romanian/Slovakian Roma (Glasgow); Scottish Showpeople (Glasgow); and Irish Traveller (London). Focus on childhood and adult vaccines. Phase 2: interviews with 39 service providers. Data were analysed using the framework approach. Interventions were identified using a modified intervention mapping approach. Phase 3: 51 Travellers and 25 service providers attended workshops and produced a prioritised list of potentially acceptable and feasible interventions. RESULTS: There were many common accounts of barriers and facilitators across communities, particularly across the English-speaking communities. Scottish Showpeople were the most similar to the general population. Roma communities experienced additional barriers of language and being in a new country. Men, women and service providers described similar barriers and facilitators. There was widespread acceptance of childhood and adult immunisation, with current parents perceived as more positive than their elders. A minority of English-speaking Travellers worried about multiple/combined childhood vaccines, adult flu and whooping cough. Cultural concerns about vaccines offered during pregnancy and about human papillomavirus were most evident in the Bristol English Gypsy/Irish Traveller community. Language, literacy, discrimination, poor school attendance, poverty and housing were identified by Travellers and service providers as barriers for some. Trustful relationships with health professionals were important and continuity of care was valued. A few English-speaking Travellers described problems of booking and attending for immunisation. Service providers tailored their approach to Travellers, particularly the Roma. Funding cuts, NHS reforms and poor monitoring challenged their work. Five 'top-priority' interventions were agreed across communities and service providers to improve the immunisation among Travellers who are housed or settled on an authorised site: (1) cultural competence training for health professionals and frontline staff; (2) identification of Travellers in health records to tailor support and monitor uptake; (3) provision of a named frontline person in general practitioner practices to provide respectful and supportive service; (4) flexible and diverse systems for booking appointments, recall and reminders; and (5) protected funding for health visitors specialising in Traveller health, including immunisation. LIMITATIONS: No Travellers living on the roadside or on unofficial encampments were interviewed. We should exert caution in generalising to these groups. FUTURE WORK: To include development, implementation and evaluation of a national policy plan (and practice guidance plan) to promote the uptake of immunisation among Traveller communities. STUDY REGISTRATION: Current Controlled Trials ISRCTN20019630 and UK Clinical Research Network Portfolio number 15182. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 72. See the NIHR Journals Library website for further project information.

Street-level bureaucracy and policy implementation in community public health nursing: a qualitative study of the experiences of student and novice health visitors.

Aim To explore the experiences of student and novice health visitors in implementing health visiting policy reform pre- and post-qualification. BACKGROUND: In England, public health nursing has been subject to major policy reform. The Health Visitor Implementation Plan (2011) set out a plan to recruit increasing numbers of nurses and midwives to the profession to deliver an expanded and refocussed health visiting service. Exploring this policy change from the viewpoint of those new to health visiting offers a unique perspective into how a specific policy vision is translated into nursing practice. METHODS: A descriptive qualitative study in which participants were enrolled on a one-year post-graduate health visiting course at a University in South West of England. Qualitative data were collected pre- and post-qualification. A total of 16 interviews and a focus group were conducted with nine participants between September 2012 and March 2013. Findings Descriptive data were interpreted using Lipsky's theoretical framework of street-level bureaucracy. Three themes emerged which relate to this 'bottom-up' perspective on policy implementation; readiness to operationalise policy, challenges in delivering the service vision; and using discretion in delivering the vision. Community public health nurses operate as street-level bureaucrats in negotiating the demands of policy and practice, and by this means, attempt to reconcile professional values with institutional constraints. Barriers to policy implementation at a local level mediate the effects of policy reform, ultimately impacting upon outcomes for children and families.