Roadmap Report and Executive Summary

Women’s Aid Federation England (WAFE) and SafeLives (SL) collaborated over five years (2016-21) to develop and implement the Roadmap Programme which aimed to transform the lives of women and girls through systemic change to policy, practice and commissioning by promoting early intervention and reducing the prevalence, impact and tolerance of domestic violence and abuse (DVA). Funded by the Big Lottery’s Women and Girls Initiative, WAFE and SL collaborated with DVA survivors and expert partners in specialist frontline services to develop and implement two contrasting interventions in five different sites in England. Both organisations were committed to making DVA services more accessible and responsive to survivors’ needs and both aimed to achieve wider system change in the sites where the programmes were delivered. However, the two organisations chose different but complementary routes by which to reach these broad goals:WAFE’s Change That Lasts (CtL) Programme1 aimed at developing a ‘whole community response’ that would increase responsiveness to DVA services at three levels: i) the community ii) frontline professionals in organisations that were not specialist DVA organisations and iii) services delivered by DVA specialist organisations. The programme comprised three interventions targeted on these three different audiences and delivered in three sites – Sunderland, Nottingham and Nottinghamshire (Nottingham/shire) and Surrey. Ask Me aimed to address cultural and attitudinal barriers to change through training and supporting Community Ambassadors who volunteered toincrease awareness and responsiveness to DVA in their local communities. Trusted Professionalcombined training with organisational development to improve expertise and responsiveness among frontline professionals. The VOICES intervention was designed to re-connect specialist DVA services to a strengths-based, needs-led, trauma-informed approach centred on the survivor for practitioners in specialist DVA organisations. The SafeLives Programme, designed by SafeLives, alongside Pioneers (survivors and experts by experience) and specialist frontline DVA partners, comprised an integrated suite of multiple interventions that would allow survivors and their families to access five different interventions within the same organisation. Two independent services, in Norwich and West Sussex (Worthing, Adur, and Crawley), were commissioned to deliver the interventions, hereafter referred to as the SafeLives Co-Designed Pilots (SLCDPs). These interventions were tailored to the needs of different groups so that survivors and their families could move between and through them on their journey to recovery. The intervention aimed to break down silos between services and deliver a ‘whole family’ service informed by DVA survivors’ views. The SLCDPs were targeted at those assessed as at medium risk of harm; people who wanted to remain in their relationships; those with complex needs; survivors recovering from abuse and children and young people. A wide range of individual and group interventions was utilised and training and skills development were provided to partner agencies

Lay-therapist-delivered, low-intensity, psychosocial intervention for refugees and asylum seekers (PROSPER): protocol for a pilot randomised controlled trial

Background: Asylum seekers and refugees (AS&Rs) experience impaired mental health and wellbeing, related to stresses in their country of origin, experiences in transit and reception on arrival, including significant barriers to accessing mainstream services. Their contact with healthcare is often crisis-driven and mediated through non-governmental organisations (NGOs). Problem Management Plus (PM+) is a psychosocial intervention recommended by the World Health Organization to address distress experienced by adults affected by humanitarian crises. We are investigating its application for the first time in a high income country. Methods In a pilot randomised controlled trial, PM+ will be delivered to AS&Rs in contact with NGOs in Liverpool City Region, UK, by lay therapists who have lived experience of forced migration. Following systematic review and stakeholder engagement, PM+ has been adapted to the local context, and lay therapists have been trained in its delivery. We will assess the feasibility of conducting a three-arm RCT of five 90-minute sessions of PM+, delivered individually or in groups by lay therapists to AS&Rs experiencing emotional distress and functional impairment, compared with each other and with usual support offered by local NGOs. Distress and impairment at baseline will be measured by Hospital Anxiety and Depression Scale (HADS) and WHO Disability Assessment Schedule (WHO-DAS). We aim to recruit 105 participants, 35 per arm. Primary health outcomes are anxiety and depressive symptoms at 3 months, measured by HADS. Secondary outcomes include subjective wellbeing, functional status, progress on identified problems, post-traumatic stress disorder, depressive disorder and service usage. Longer term impact will be assessed at 6-months post baseline, on the same parameters. We will assess the feasibility of conducting a full RCT in relation to the following elements: recruitment and retention of lay therapists and study participants; fidelity of delivery of PM+; and suitability of the study measures, including any linguistic or cultural barriers. Discussion We will use these findings to specify the parameters for a full randomised controlled trial to test the effectiveness and cost effectiveness of PM+ in reducing emotional distress and health inequalities, and improving functional ability and wellbeing, amongst asylum seekers and refugees

The Problem Management Plus psychosocial intervention for distressed and functionally impaired asylum seekers and refugees: the PROSPER feasibility RCT

BackgroundThe prevalence of psychological morbidity among asylum seekers and refugees is high, but these groups encounter extensive barriers to accessing health and social care. The aim of the PROSPER study was to assess the feasibility of conducting a randomised controlled trial in the UK of Problem Management Plus (PM+), an evidence-based psychosocial intervention delivered by lay therapists for distressed and functionally impaired asylum seekers and refugees.DesignWe undertook a feasibility study of PM+, which included a pilot study of the design features of a future definitive randomised controlled trial and economic evaluation. The feasibility study involved the adaptation of PM+ based on evidence drawn from literature synthesis and local stakeholder engagement, and a two-stage training procedure for lay therapists. These were followed by a pilot trial designed to assess the feasibility of conducting a three-arm randomised controlled trial of five 90-minute sessions of PM+, delivered individually or in groups, with 105 participants randomised 1 : 1 : 1 to individual PM+, group PM+ or a control intervention. Primary health outcomes were anxiety and depressive symptoms at 3 months; other outcomes included post-traumatic stress disorder symptoms, quality of life, progress with identified goals and service use.FindingsWe demonstrated that the form and content of PM+ could be adapted to meet the needs of asylum seekers and refugees. Twelve people with lived experience of the asylum process were successfully trained as lay therapists to deliver this targeted, low-intensity psychosocial intervention in local asylum seeker and refugee communities. The pilot trial was affected by governance issues. It began in December 2019 and was cut short by the COVID-19 pandemic. We were not able to complete recruitment and follow-up as planned; 11 out of 105 (10%) participants were recruited to the pilot trial (individual PM+, n = 4; group PM+, n = 3; control, n = 4); 8 out of 11 participants were followed up at 13 weeks and 7 out of 11 participants were followed up at 26 weeks. (Preliminary data were gathered on recruitment and retention, intervention fidelity and acceptability of study measures, including service use measures.)LimitationsProtracted delays due to governance issues, followed by the COVID-19 pandemic, meant that we were unable to complete the pilot trial or to provide evidence regarding the feasibility of group PM+. The complexities of working with multiple languages and cultural groups were noted. There were mixed views on how successful PM+ might prove, and we had insufficient evidence to provide clear conclusions.Future workFuture research could explore how technology can be used to improve the acceptability, feasibility, efficacy and potential cost-effectiveness of scalable mental health interventions and well-being support for distressed asylum seekers and refugees. The use of mobile phone and/or app-based forms of support may help to increase asylum seekers’ and refugees’ willingness to engage in research of this type.ConclusionsAlthough it was not possible to specify the parameters for a full randomised controlled trial of PM+ for asylum seekers and refugees in the UK, our findings offer guidance on strategies that may be of value in future studies of this nature.Trial registrationThis trial is registered as ISRCTN15214107.FundingThis project was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme and will be published in full in Public Health Research; Vol. 10, No. 10. See the NIHR Journals Library website for further project information

Protocol for the Rare Dementia Support Impact Study: RDS Impact

OBJECTIVES: The Rare Dementia Support (RDS) Impact study will be the first major study of the value of multicomponent support groups for people living with or supporting someone with a rare form of dementia. The multicentre study aims to evaluate the impact of multicomponent support offered and delivered to people living with a rare form of dementia, comprising the following five Work Packages (WPs): (1) Longitudinal cohort interviews; (2) Theoretical development; (3) Developing measures; (4) Novel interventions; and (5) Economic analysis. METHODS: This is a mixed-methods design, including a longitudinal cohort study (quantitative and qualitative) and a feasibility randomised control trial (RCT). A cohort of >1000 individuals will be invited to participate. The primary and secondary outcomes will be in-part determined through a co-design Nominal Groups Technique pre-study involving caregivers to people living with a diagnosis of a rare dementia. Quantitative analyses of differences and predictors will be based on pre-specified hypotheses. A variety of quantitative (e.g. ANOVA and multiple linear regression techniques), qualitative (e.g. thematic analysis) and innovative analytical methods will also be developed and applied by involving the arts as a research method. RESULTS: The UCL Research Ethics Committee have approved this study. Data collection will begin in Q4 2019. CONCLUSIONS: The study will capture information through a combination of longitudinal interviews, questionnaires and scales, and novel creative data collection methods. The notion of 'impact' in the context of support for rare dementias will involve theoretical development, novel measures and methods of support interventions, and health economic analyses

Conducting Large-Scale Mixed-Method Research on Harm and Abuse Prevention with Children under 12: Learning from a UK feasibility study

This paper reports on a feasibility study for an evaluation of a UK primary school-based prevention programme that addresses multiple forms of abuse and neglect, identifying research design and ethical issues and exploring research practice. For this feasibility study, 194 children aged 6–11 years completed a baseline survey and 113 did so following the intervention. Eight focus groups were undertaken with 52 children and nine interviews with school staff. We highlight key considerations for conducting large-scale mixed-method research on sensitive topics with younger children, a focus that is largely absent from the extant research methods literature. The feasibility study showed that younger children can contribute their views on sensitive topics in ways that are measurable, replicable and reliable, contesting ideas that certain topics are too sensitive to explore with younger children

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation

BACKGROUND: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. OBJECTIVE: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. METHODS: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. RESULTS: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. CONCLUSIONS: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population

Beyond social prescribing-The use of social return on investment (SROI) analysis in integrated health and social care interventions in England and Wales: A protocol for a systematic review.

With increasing costs of healthcare in England and Wales following the COVID-19 pandemic, finding alternatives to traditional medical interventions is more important than ever. Social prescribing provides a way of addressing health and well-being through using non-medical methods that may help relieve costs to the NHS. Evaluating interventions, such as social prescribing, which have high social (but not easily quantifiable) value, can be problematic. Social return on investment (SROI) is a method of assigning monetary values to both social value as well as traditional assets, so provides a way of evaluating social prescribing initiatives. This protocol outlines the steps that will be taken in a systematic review of the SROI literature surrounding social prescribing-type integrated health and social care interventions based in the community in England and Wales. Online academic databases such as PubMed Central, ASSIA and Web of Science will be searched, as will grey literature sources such as Google Scholar, the Wales School for Social Prescribing Research (WSSPR) and Social Value UK. Titles and abstracts from the articles returned by the searches will be reviewed by one researcher. Those selected for full text review will be independently reviewed and compared by two researchers. Where the researchers disagree a third reviewer will help resolve any differences. Information collected will include identifying stakeholder groups, assessing the quality of SROI analyses, identifying intended and unintended changes of social prescribing interventions, and comparing social prescribing initiatives in terms of SROI costs and benefits. Quality assessment will be independently conducted on the selected papers by two researchers. The researchers will discuss to obtain consensus. Where there is disagreement, a third researcher will resolve these cases. A pre-existing quality framework will be developed and used to assess the quality of the literature. Protocol registration Prospero registration number: CRD42022318911