Prof Louise Wallace

Promoting resilience and wellbeing through co-design (PRIDE): The Pride Rainbow Toolkit Project has three main objectives: 1) To co-design a media rich “online rainbow wellbeing” toolkit with LGBTQ+ adolescents, and experts in psycho-social coping strategies as well as public health leaders (e.g. commissioners of services, experts on bullying prevention, therapists and police, teachers and youth workers); 2) To explore how the online toolkit can be used within UK public health systems by LGBTQ+ youth themselves, and by community organisations and professionals who would benefit from use of the online toolkit (e.g. as continuing professional development/CPD); and, 3) To plan the delivery of the intervention and determine the design and measures for a future effectiveness study as well as further implementation of the toolkit. Project website: https://healthwellbeing.kmi.open.ac.uk/related-projects/httphealthwellbeing-kmi-open-ac-ukrelated-projectsthe-internet-and-rainbow-young-people-how-can-online-resources-better-support-wellbeing/

There are around 900,000 learning disabled people in the UK and around a fifth are estimated to engage in behaviours that challenge (BTC). These behaviours often occur when the person is upset by a change in their environment. While research and NICE guidance exists on older learning disabled people and their family carers, and separately on people with BTC; policy and research in the UK has so far failed to address how services can be addressed to support older learning disabled people with BTC. We know very little about how family caregivers face the choices and challenges about caregiving as they become older but know that decisions can be left too late to enable choice. We know even less about the experiences of older people with BTC particularly in the context of transitioning to older people’s services, in periods of crisis or at end of life. There is an even more pronounced absence in the academic and grey literature regarding the lives and experiences of older learning disabled people with no family carers. Our study will explore the support and health needs of older learning disabled people and carers and identify ways of easing transitions to different care settings through forward planning and reducing the development of BTC. This is particularly important as learning disabled people are living to an older age. We will explore how carers manage their caring role as they age themselves. How they experience and negotiate behaviours that challenge. How the concept of forward planning can be introduced in a way that is acceptable and reassuring to carers and their children. How health, social care and end of life care services can best support older learning disabled people with BTC including situations where active family involvement is absent. And how commissioners can be innovative in developing a service infrastructure that better meets the needs of this group.

Improving end-of-life care planning (EOLCP) and enabling choice and equitable access to palliative care are key strategies in government policy but people from Black Asian and Minority Ethnic (BAME) communities are disadvantaged. Thinking ahead about choices may help people be cared for in the way, and in the place, that they prefer, however, little is known about how this policy and practice 'fits' values and beliefs of BAME communities. Additionally our work has shown that many health care professionals (HCPs) lack confidence in supporting BAME patients and their families. Setting: East Midlands, UK. Patients, family Care givers (FCGs) and HCPs will be recruited through primary and community care, specialist palliative care services and acute hospital services within Leicestershire and Nottingham. Design: A 30 month qualitative study with four work streams. 1: Longitudinal patient-centred case studies with 15 patients triangulating different data sources including baseline and follow up interviews over 3 months with patients, FCGs and HCPs and review of case notes. 2: Interviews with 20 bereaved BAME family carers who have experienced the loss of an adult family member from chronic illness or frailty. 3: Interviews with 20 HCPs across primary and secondary care to explore their experiences and practices of engaging in EOLCP with FCGs of BAME children or young adults with life limiting illness*. 4: Stakeholder workshops in Nottingham and Leicester will initiate dissemination of findings, identify priorities for practice and promote the development of research and training collaborations. Fictionalised, real-life scenarios and EOLCP practices derived from the data will be presented and discussed to aid development of effective practices that enable patient choice and cultural congruence in EOLCP. Analysis: The qualitative software programme NVivo 11 will be used to facilitate a thematic analysis of interview data sets based on the principle of constant comparison(r). Case study analysis (r) will triangulate the multiple data sources and create an integrated narrative (within case analysis). Complexity theory (r) and shared decision-making (r) will inform outputs which aim to equip HCPs to provide effective care in the context of uncertainty(r). * Findings from our current work exploring HCPs experiences with terminally ill adult BAME patients will be integrated with this project.

In this study we will update the Cochrane review of trials “Support for healthy breastfeeding mothers with healthy term babies” to identify from all over the world, types of support that help women to breastfeed. Then, we will identify which of these types of support might be relevant to the UK and the NHS. Next, we will look for all types of research available (not just trials) that provide more information about these types of support identified as relevant to the UK. This could include information about what helped and what hindered providing each type of support and when this support might be most effective. We will also estimate the costs of providing these different types of support. This will help the NHS to make decisions about investing in better breastfeeding support. We will create NHS guidance to inform commissioning decisions to help more women sustain their decision to breastfeed in the UK. Finally we will learn lessons from this research that might help other researchers carry out similar studies on different topics. The study will take 18 months to complete. The project will involve an important element of participation and researchers will work closely with health service staff and breastfeeding women across all the stages of the study. We will create a stakeholder working group which will include health professionals and people from breastfeeding support organisations. We will invite 6-8 parents to form a Parent’s Panel. The Stakeholder working group and the parents’ panel will be involved in all stages of the research and will have three meetings with the researchers. Two of those meetings will be by telephone. We will also conduct three focus groups with disadvantaged women. Near the end of the study, we will hold four workshops, one each in England, Scotland, Wales and Northern Ireland. We will invite more stakeholders to the workshops to get their opinions on the findings of the study. This will make sure that the NHS guidance is relevant to women and babies and NHS staff throughout the UK.

Complex intervention development: Manualised approach to staff training/policies/parent involvement, including an algorithm for responsive feeding for tube-fed preterm babies transitioning to oral feeding in Neonatal units in the UK.