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.

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.

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.

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.

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."

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 .

'You likes your way, we got our own way': Gypsies and Travellers' views on infant feeding and health professional support.

BACKGROUND: Gypsies and Travellers are known to have poor health status and access to health services, even in comparison with other ethnic minority groups. People from this stigmatized ethnic group are rarely consulted about their health needs or health service provision. Optimal infant feeding in the first year of life has the potential to improve lifelong health. OBJECTIVE: The aim of this study was to explore mothers and grandmothers' views on feeding in the first year of life, including the support provided by health professionals. METHODS: Semi-structured interviews were conducted with a purposively selected sample of 22 mothers and grandmothers of English Gypsy, Irish Traveller and Romanian Roma ethnicity between November 2011 and February 2012 in a city in south-west England. RESULTS: Few women perceived themselves as requiring help from health professionals in infant feeding, as acceptable and accessible support was available from within their own communities. Roma mothers described a tradition of breast-feeding and appropriately timed weaning, while English Gypsies and Irish Travellers customarily practised less healthy infant feeding. When mothers requested support, health service provision was often found inadequate. CONCLUSION: Exploring the views of Gypsies and Travellers is important to gain insight into the provision of health services for this marginalized ethnic group. This study has implications for policy and the practice of health professionals, in indicating the customary feeding behaviours of some Gypsy and Travellers, and highlighting areas meriting culturally sensitive health promotion.

How do parents look after children's teeth? A qualitative study of attitudes to oral health in the early years.

This study aimed to examine how parents and carers of pre-school children care for their children's teeth. Twelve in-depth interviews were conducted with mothers of pre-school children at a children's centre in Bristol. The interviewees were aged between 29 and 37 years, and the number of children in the families ranged from one to four, with their age range spanning four weeks to 11 years. Using a grounded theory approach, transcribed interviews were coded and analysed until several themes emerged from the data. The study identified an overarching theme of parents' belief that oral health care for their children was common sense, which was a key factor influencing advice seeking from professionals. Sub-themes were the difficulties in establishing home oral healthcare routines and a lack of knowledge of when to register their child with a dentist. Advice was often given inconsistently and parents experienced difficulties accessing services, with many not seeking advice and information pro-actively. The study concluded that some parents are missing out on important early information, advice and care around oral health for their young children.

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.

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.

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.

Do targeted child health promotion services meet the needs of the most disadvantaged? A qualitative study of the views of health visitors working in inner-city and urban areas in England.

AIM: The aim of this study was to explore health visitors' views on the effects of policy change on the services they offer to preschool children in areas of high health inequalities in England. BACKGROUND: Child health promotion services are offered throughout the world to maintain and improve children's health. It is not known how the policy shift to a more overtly targeted service, which has occurred in some countries, has affected child health promotion practice in areas of deprivation. METHODS: An in-depth telephone interview study was conducted between October 2006 and January 2007. All participants (n = 25) were registered health visitors who had taken part in a 2005 National Survey of Child Health Promotion Practice in England and were delivering health promotion services to preschool children in inner-city and urban areas. RESULTS: Despite high levels of need, some children who would have benefited from an enhanced health visiting service were offered only the core programme. Local interpretation of national policy is a key factor in determining the level of service offered, and the extent of targeting. CONCLUSION: This study illustrates the importance, in any country, of exploring the effects of national policy change from the perspective of practitioners, to identify unintended outcomes. Reductions in the core child health promotion programme can lead to difficulties in monitoring and improving children's health outcomes in areas of deprivation.

Health visitors' experiences of child health promotion policy reform in England.

Child health promotion services in England have been revolutionised in the last decade, with a shift from a low-threshold universal service to a more highly targeted programme. This has affected health visitors' preventive healthcare work with families. This paper draws on findings from the qualitative arm of a mixed-methods study that aimed to explore how child health promotion reform has been implemented. The particular focus of this paper is on health visitors' experiences of the process of policy reform. In-depth semi-structured telephone interviews were conducted with 25 health visitors working in urban areas in England, and data were analysed thematically. Health visitors described policy change as being enforced, but views on the new programme were coloured by the extent to which practitioners retained the autonomy to offer a service according to their professional judgment. Where practitioners retained professional autonomy, services were adequately staffed and there was a functional working environment, then interviewees were positive about child health promotion reform. Where health visitors felt they could not offer an appropriate level of health promotion services, they had grave concerns about the impact on child public health.

Nursing care of prisoners: staff views and experiences.

AIM: This paper is a report of a study of the views and experiences of nurses and other prison healthcare staff about their roles and the nursing care they provide to prisoners. BACKGROUND: Nurses have become the key providers of healthcare in prison settings in England, replacing the previous prison service-run system. However, there is very little evidence about the health services they provide to meet the health needs of prisoners. METHOD: A ethnographic study was conducted. Participants were 80 healthcare staff working in 12 prisons of all security categories in England. Twelve individual interviews with general healthcare managers and 12 key informant focus group discussions with healthcare staff were undertaken in 2005 using a semi-structured interview schedule. Issues investigated included participants' thoughts and experiences of nursing roles and delivery of primary healthcare. The group discussions and interviews were analysed to identify emerging themes. FINDINGS: Participants gave accounts of day-to-day processes and the healthcare routine. They saw their work as identifying and meeting the health needs of prisoners and maintaining their health, and identified major influences that shaped their daily work, including new ways of working in primary care. They identified how policy and organizational changes were affecting their roles, and acknowledged the conflict between the custody regime and healthcare delivery. CONCLUSION: The move towards a NHS-led primary healthcare service within prisons, predominantly delivered by nurses, has made positive changes to healthcare. Healthcare managers have benefited from the involvement of the local NHS in improving the health of prisoners.

'Cut out for breastfeeding': changing attitudes to breastfeeding.

This paper reports on an intervention to promote breastfeeding that was carried out in Bristol during National Breastfeeding Awareness Week 2009. The aim of the intervention was to increase public awareness of breastfeeding, and change attitudes to breastfeeding in public. To do this, four almost life-size cardboard cut-out figures were designed and produced that showed local mothers breastfeeding their babies, and these were displayed in a variety of public places around Bristol. The figures were accompanied by breastfeeding supporters who distributed feedback questionnaires to members of the public. The intervention was carried out by a multidisciplinary team, consisting of the breastfeeding development managers from the public health directorate at NHS Bristol, local peer supporters, breastfeeding counsellors, health visitors, children's centre workers and members of the National Childbirth Trust from Bristol and South Gloucestershire. On-the-spot evaluation of public opinion suggested that this intervention can contribute to raising awareness of breastfeeding and changing attitudes to breastfeeding in public.