Understanding uptake of immunization in Gypsy, Traveller and Roma communities

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Understanding uptake of immunization in Gypsy, Traveller and Roma communities cath@validresearch.co.uk Visiting Senior Research Fellow University of York

Gypsies, Travellers and Roma in the UK Defined by nomadic lifestyle or descent 360,00 Travellers York English Gypsy Bristol Romanian Roma English Gypsy/Irish Traveller Glasgow Slovakian and Romanian Roma Scottish Show People London Irish Traveller

Immunisation in Traveller Communities Recurring outbreaks of vaccine preventable diseases in Travelling communities suggest immunisation uptake is low Rates of uptake of immunisations are unclear Immunisation services are not based on need and variably provided

Aims and Focus 1. Explore the barriers and facilitators to acceptability and uptake of immunisations in six Traveller communities across four UK cities 2. Identify possible interventions to increase the uptake of immunisations in these Traveller communities UK childhood immunisation programme Adult flu vaccination and whooping cough vaccine (pregnant women) UNderstanding uptake of Immunisations in TravellIng and Gypsy communities (UNITING): protocol for an exploratory, qualitative study. BMJ Open 2015;5:e008564. doi:10.1136/bmjopen-2015-008564.

Prioritised Interventions 1. Cultural competence training for health professionals and frontline staff 2. Named frontline person in Primary Care Centre to provide respectful and supportive service 3. Identify Travellers in health records to tailor support and monitor uptake 4. Flexible and diverse systems for booking appointments, recall and reminders 5. Protected funding for Health Visitor specialising in Traveller health including immunisation Social Ecological Model Intrapersonal Interpersonal Community Institutional Travellers who are housed or settled on an authorised site Policy

Cultural Competence Training Components Traveller lifestyle and values Beliefs regarding immunisations Remove negative stereotypes Enable collection of ethnicity data in a sensitive and appropriate manner Mode and intensity of delivery Differences in content and delivery across communities and settings Potential barriers and facilitators All health professionals should be considered but as a minimum these groups should be prioritised: GPs, Health Visitors, Midwives, Practice nurses and Receptionists National Policy and Guidance to achieve universal implementation and standards Concerns about pregnancy vaccines and HPV particularly evident in Bristol English Gypsy, Irish Traveller community Funding, time Link to interventions 2 and 3 Medical Research Council (2008). Developing and evaluating complex interventions: new guidance.

Researchers identify potential interventions from interviews with 174 Travellers and 39 Service Providers (modified Intervention Mapping) 51 Travellers and 25 Service Providers agree prioritised list of potentially feasible and acceptable interventions (2-step Prioritisation) Researchers review prioritised lists for all six communities

Travellers Views Knowledge about immunisations Travelling Concerns about imms in general Acceptance of immunisation Sources of information Intergenerational change Recall and reminders Relationships with health professionals Language and literacy Maternal decision makers Discrimination Influence of the family over peers Beliefs about specific vaccines School attendance Access to health services Attending appointments

Service Providers Views Discrimination Poverty Housing Recall and reminders Joined up working Access to health services Trusting relationships Record keeping and monitoring Flexible appointments Funding of services Local and national strategies NHS Reforms

Barrier T = Traveller S = Service Provider Intervention Mapping http://interventionmapping.com Objective Target / SEM Ideas for Intervention (Bristol English Gypsy data) Additional Ideas for Intervention (Advisory/ Research Team) BEG C1.5 Negative cultural views for specific vaccines. Whooping cough - fear of brain damage in child and view that pregnancy should be natural. HPV - idea girls don t need it as don t have sex until married, so is seen as inappropriate and offensive T Improve knowledge Acknowledge cultural beliefs Primary Care Community Intrapersonal Interpersonal Institutional Community Links to BEG-C-IE Verbal explanation from health professional T BEG-C-IB Community Champions T BEG-C-IA Social media with accurate messages Facebook T Links to BEG-C-ID Work with school nurses to change way HPV jab is presented to teenage girls i.e. about cancer and when important to have it S BEG-C-IC Cultural competence training BEG-C-IG Work with targeted groups e.g. fathers, teenage girls Links to BEG-C-IG Support teenage girls to speak with elders Links to BEG-C-IE Understand where beliefs/concerns are coming from

2-step Prioritisation Travellers and Service Providers worked separately to rank interventions by potential impact How much of a difference would this make to your community? Came together to agree top 5 focus on acceptability and feasibility Can do approach Developing evidence-based recommendations in public health-incorporating the views of practitioners, service users and user representatives. Health Expectations 2008;11:3-15.

Conclusions Identifying interventions to increase immunisation uptake in low access population Components, mode and intensity of delivery, differences, barriers/facilitators Driven by community/provider views Theoretically informed Established methods of intervention mapping and prioritisation

Our Team York: Cath Jackson, Lisa Dyson, Helen Lewis, Karen Overend, Zoe Richardson, Christine Shepherd, Lesley Smith Bristol: Louise Condon, Julie Mytton, Annie Crocker, Hilary Beach, Linda Vousden Glasgow: Susan Kerr, Carol Emslie, Lana Ireland, Bridget Gallagher London: Helen Bedford, Philippa Kemsley, Frieda Schicker, Gill Francis UEA: Francine Cheater Anglia Ruskin University: Sarah Redsell

This project was funded by the National Institute for Health Research Health Technology Assessment Programme (12/17/05). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA, NIHR, NHS or the Department of Health