Impact case study database

This research has provided parents with an important source of support and enhanced both professional practice and service delivery. It has also facilitated a change in public attitudes towards post-mortem.

Empowering people and communities: The research team created a model for creative bereavement support workshops which are being rolled out nationally by bereavement support charities (8 conducted so far with over 1,000 participants) (e.g. Lullaby Trust, Wings of Love project S1, S2). Bereavement support charities (e.g. Teardrop, Northumbria) have used the research to raise awareness in “ communities that often feel sidelined” in the North East, and to lobby local NHS Trusts for change in service delivery (S3). Other charities have used the research to raise public awareness, encouraging bereaved parents to seek organised support (e.g. Zephyrs, Nottingham S4). Online parent support communities have emerged as a result of our project exhibition Remembering Baby (S5). Testimonials and letters of support show the sheer significance of this research impact on bereaved parents: “you have brought light and broken the taboo. I think the world should see your work! Please keep going and bring a voice for us and our beautiful babies” (S5).

Professional development: The research team created a film Matter of Fact, based on qualitative interview transcripts with professionals. This film, which featured in our exhibition, is used to train staff in NHS trusts across the UK (e.g. APTs, Northumbria; Neonatal Nurses, Yorkshire & Humber and East Midlands), and has also been implemented as a bereavement support tool by charities (S1, S3). The film has been translated into Spanish and featured in various international events on Stillbirth, SIDs and Perinatal Post-mortem (S6, S7). Professional testimonials demonstrate how the film provides essential professional training: “Highly useful tool for families and healthcare professionals” and parent accounts highlight its emotional impact “ The word “post-mortem” used to scare me, now it doesn’t, as now I know my baby was treated with love, care, dignity and respect. Thank you” (S7, S5). Our pioneering multi-professional approach has led to innovative consent training for midwives (S7), an approach that has been showcased at elite national medical events such as the Royal College of Radiology annual conference. The research team have also created CPD opportunities for neglected professionals such as paramedics, fostering essential connections between hospital-based care and emergency services (S7).

Changing practice and service delivery: The research has had a direct impact on practice across Sheffield Teaching Hospitals (STH) and Sheffield Children’s Hospital (SCH). STH have developed a creative bereavement support group based on our original Festival of Social Science workshop Lasting Impressions which has significantly enhanced parent support mechanisms (S8). Information materials given to parents about post-mortem have been re-written to include professional care practices (S6, S9, S8). Midwives routinely use our Remembering Baby quilt during their family visits because “ it visually displays to parents that they are not alone and are not the only ones who have experienced loss” (S8). All parents across STH can now create a fabric square for a memorial quilt (S8). The research has fostered new dialogue across different NHS Trusts, leading to changes in clinical practice in hospitals beyond Sheffield. For example, Northumbria NHS Foundation trust are piloting the feasibility of a Minimally Invasive Post-mortem service (S3). Without this research professionals within and across NHS Trusts would continue to work in silos and bereaved parents wouldn’t receive the care currently being established (S1, S3, S6, S7 & S9).

Raising national public awareness and challenging taboos: The exhibition and project have received sustained media coverage, with reviews stating that this is “ pioneering work in breaking down the conversational silence” leading to a change in public attitudes to baby loss and post-mortem. There have been, to-date, over 20 media reviews and reports including: BBC main news site, BBC Radio 4 PM programme, BBC Radio Sheffield (2018 & 2019), BBC Radio Nottingham (2018), Sheffield Live, SANDS: Stillbirth and Neonatal Death Charity (2017 and 2018), and Yorkshire Post (S10). Furthermore, around 2000 people visited the Remembering Baby exhibition during 2017-18. 250 formal FSS ESRC evaluation forms, 213 visitor book entries, around 300 social media responses, 50 emails, 15 written testimonials, and two invited impact publications (e.g. CRUSE affiliated Journal of Bereavement Care) all capture the extent of this impact (S1, S5, S7, S10, R5).

As a result of the extent & quality of the impact that this research has achieved, Reed and her team were awarded the ESRC Outstanding Societal Impact Prize in July 2019 (S1).

Challenging and reframing understandings among practitioners and decision makers at national and local levels

Salway drew on research findings [R1- R4] in oral and written policy briefings to policymakers and healthcare professionals to effectively improve knowledge and reframe understanding away from a focus on marriage practices towards enhancing informed choice and service equity.

In 2018, Salway established a national Steering Group, with Public Health England, NHS England/Improvement (NHS/I), Department of Health and Social Care (DHSC), plus eight professional bodies. This was 'completely new and desperately needed' [GP with Special Interest (GPwSI) in Genetics and Primary Care Adviser, HEE Genomics Programme, S1]. Salway used the Steering Group to issue policy briefings to key professional networks (maternity, general practice, genomics). Salway was subsequently asked to present at the Maternity Transformation Programme (MTP) Inequalities Roundtable chaired by Chief Midwife, Jacqueline Dunkley-Bent in November 2019. Salway’s research is credited with “ challenging earlier approaches” [Principal Genetic Counsellor, S1] and generating new understanding of need and appropriate action [GPwSI in Genetics and Primary Care Adviser, HEE Genomics Programme, S1].

Learning events across England (September 2013-2020) drew on Salway's research findings [R3, R4] to inform course content. Over 470 healthcare professionals representing, amongst others, public health, midwifery, clinical genetics, and health visiting attended these events, which were held in every 'high need' area in England [Learning event feedback, S2]. Event evaluations demonstrate impact on knowledge and awareness. Events were “thought provoking, helping to shift attitudes around the issue and the role of professionals in addressing unmet need” [Director of Public Health, Rotherham, S3] and delivered important learning [S2]. Online materials were promoted reaching 4,594 users and learning resources are being adapted for the NHS e-Learning for Health “attesting to their recognised importance and quality” [GPwSI in Genetics and Primary Care Adviser, HEE Genomics Programme, S1].

Locally, Salway established and chaired the Sheffield multi-agency community genetics group 2013-2016 and remains a member, enabling sustained research-informed dialogue. The research “helped to significantly raise awareness and shift understanding of the issue among key professional stakeholders” [Director of Public Health, Sheffield, S3]. In 2019, Salway gave “invaluable” guidance to a BBC Newsnight feature shaping the first mainstream media coverage to highlight “the important issue of improving access to genetic services” [Producer, S4]. In Birmingham, this coverage created “ a more receptive atmosphere” amongst local politicians [Interim Assistant Director of Public Health, S4], prompting a presentation to the council’s Health Overview and Scrutiny Committee. Salway has briefed public health officials working in communities with England’s highest rates of consanguinity: Rotherham, Leicester, Bradford, West Midlands, and several London boroughs.

Directly influencing new policy, practice, and investment

In 2019, the national Steering Group was formally incorporated into the MTP Reducing Inequalities work plan. In 2020, Salway’s findings [R5, R6] “directly shaped the development of the first national policy proposal in this area” [Consultant Geneticist, S5]. Salway worked with clinical stakeholders to make a case for government funding. Her work was used to design a proposed new model to incorporate national, regional, and place-based solutions. “This represents a significant new national policy development since all prior action has been locally led and often not sustained” [Consultant Geneticist, S5]. The submitted proposal includes multi-million-pound investment which would flow to eight areas of highest need and includes newly developed specialist posts. This constitutes a significant policy innovation. “ Reducing genetic risk amongst ‘at risk’ populations is necessary to help achieve the ‘halve it’ aim and to reduce health inequalities […] Therefore, the work of Professor Salway and others aligns closely to the MTP’s strategic aims. The work is valuable because it identifies not only the issues but also clear, practical, evidence-based solutions […] The quality of the research enabled us to gain support for the proposal from senior colleagues, both internally and externally” [Programme Manager MTP, S6].

Salway’s research has been instrumental in informing the development of the Clinical Genomics Service specification through the incorporation of explicit attention to unmet ethnic minority needs . Without Salway’s work the Principal Genetic Counsellor, Manchester, states “the progress that has been made at local and national level…would not have been possible” [S1]. Salway was an invited expert in the West Yorkshire and Harrogate Local Maternity System Prevention Workstream (2020). Her Delphi research [R5] directly informed the development of the expert group recommendations and is now shaping action to enhance service access and increased genetic literacy at the community level. “The recommendations are now guiding local action, particularly in Bradford and Kirklees, two areas with high numbers of families at risk and in need of enhanced services. Further, Sarah has supported both these areas via the adaptation of evidence-based genetic literacy materials” [Programme Manager for Improving Population Health & Public Health Lead for Maternity, S7].

At a local level Salway’s research [R1-R4] directly shaped Sheffield’s new response to the issue. This included the creation of a novel Community Genetics Outreach Worker post and use of co-produced genetic literacy materials at community and health professional levels [Community Outreach Worker, S8; Director of Public Health Sheffield, S3].

Seven of the Local Authorities with the highest need have adopted the genetic literacy materials to support genetic literacy strategies [Programme Manager for Improving Population Health & Public Health Lead for Maternity, S7; S9].

Enhanced information and service access

Enhancing informed choice among even small numbers of individuals has huge benefits at family and health service level due to the high social, emotional, and financial costs associated with severe conditions. Families raising a disabled child face extreme economic pressure; it is estimated that it is three times more expensive to raise a child with disabilities than without. The emotional and social impact of unanticipated affected births can also be significant for parents and wider families. Therefore, access to accurate, sensitive, and trusted sources of information is essential. Salway’s research has impacted over 1,000 people in Sheffield via face-to-face conversations amongst practitioners and community members and through the 5,000 distributed genetic literacy leaflets [Director of Public Health Sheffield, S3]. The genetic literacy materials have been “ extremely important in engaging community members and helping them to understand the patterns of risk and gain confidence to discuss the issue” [Community Outreach Worker, S8]. Case studies developed by Sheffield City Council, documenting their outreach work, demonstrated that families were better informed and better supported to access genetic services [Director of Public Health Sheffield, S3].

Additionally, health and social care costs can be very high due to multiple hospital appointments, repeated hospital stays, care from multiple specialities and community teams, medication, home adaptations, and treatment. For a child with severe learning disabilities alone, the average care package cost per annum is estimated at £70k. Thus, a clear pathway of support and collaborative working amongst health and social care services is vital. Salway’s research played a crucial role in developing more joined-up working [Programme Manager MTP, S6] and creating and sustaining this work [Director of Public Health, S3; Community Outreach Worker, S8].

Given the contemporary social and political context it is extremely difficult to gain traction with findings that challenge entrenched priorities. As such, our strategy was: (i) to reframe the policy debate, by introducing child welfare as a matter of inequality; and (ii) to influence social work practice at national and local authority (LA) levels.

Changing understanding

Our media and public engagement strategy allowed extensive research dissemination and reach. The research attracted widespread media coverage, featuring on BBC prime time news and webpages, Radio Four, the Guardian and relevant professional publications (S1).

In Parliament, the research team presented evidence to the 2016/17 APPG Select Committee on Children. Morris’ evidence was quoted in their report, setting out the recommendations for policy changes (S2). Questions directly drawing on CWIP have been asked by MPs in the House of Commons (S3) and, for the first time, Ofsted (2017) included deprivation as a consideration in their assessment of Children’s Services (S4). These examples demonstrate a fundamental shift in understandings of the link between poverty and children’s services that are directly attributable to CWIP.

The national Care Crisis Review, coordinated by Family Rights Group, was established in 2017 in response to growing concern about the rising number of children in the care system. Findings from CWIP were heavily drawn on in the analysis of drivers for intervention rates and in the development of Inquiry outputs (S5), with Morris appointed to the Steering Group as an Advisor.

Internationally the research has also resulted in the formation of a child welfare anti-poverty network.

Policy change

Our impact strategy has placed child welfare inequality on national policy agendas across the UK. This policy shift is embodied through: (i) the positioning of child welfare inequalities in policy recommendations and statements; and (ii) the commissioning of related guidance and research by national UK governments.

• Morris, alongside CWIP partners presented evidence to the Association of Directors of Children’s Services (2017/ 2018), significantly influencing their national policy statements and informing their analysis of the issues and changes required in child protection and care (S6).

• In Northern Ireland, the Department of Health commissioned and produced a national Anti-Poverty Practice Framework for social work (S7) that brings poverty into the foreground of social work practice, responding directly to the CWIP case study findings.

• In Scotland the Neglect Strategy has been amended in light of the CWIP findings, specifically the need to move away from holding parents responsible for material and environmental conditions (S8).

UK practice & service change

National organisations

The team has worked closely with the British Association of Social Workers (BASW) to support changes in social work policy and practice. BASW produced a podcast on CWIP, shared with their 20,000 membership. This has accompanied the joint production of practice guidance for BASW members (Sept 2019, S9) that draws directly from the case studies to encourage practice considerations of family socio-economic circumstances in case planning.

A CWIP app (CWIP App www.cwip-app.co.uk) was developed by Webb (Sheffield), enabling social workers to visualise and understand how LA data relate to core CWIP findings. The app was actively promoted by BASW. Adoption of the CWIP App has been high, being used by every local authority in England. Over 500 hours of active use have been logged (by 28-Sep-2020). This work was cited in evidence given to the Comprehensive Spending Review by Children England (S6).

The national DfE funded the ‘practice supervisors’ programme (which works with over 100 local authorities and national children’s services partners) commissioned a resource to address issues of poverty and deprivation, drawing directly on the case study findings. This resource forms part of an open access repository of practice resources (S9), used by over 200 social work supervisors in routine practice supervision across England.

Local authorities

The CWIP team led over 50 practice-focused sessions in LAs, with staff reporting routine practice changes to ‘poverty proof’ their approaches. The research has been extensively used in training social workers, and their practice managers (S10).

Morris and Featherstone led five workshops for local managers across England, including over 100 staff. As a result, Morris and Featherstone have worked directly with multiple LAs, changing policy and practice by training frontline managers and staff. For example, in Barnsley Morris and Featherstone have worked alongside senior managers and frontline staff to revise their neglect strategy and to poverty proof their practices (S10). This includes assessing socio economic conditions explicitly, the formation of a LA wide Poverty Task and Finish Group to drive forward practices that address the consequences of poverty.

Further studies

• In Wales a national study has been commissioned (2018) by the government to replicate the English, Scottish and NI case studies, with Mason and Morris as advisors.

• Internationally the research has resulted in comparable work in New Zealand and Norway.

Gerrard’s research has led to wide-scale policy changes at two of the world’s most popular social media companies: Instagram and Tumblr (1 billion and ~400 million active users worldwide respectively, Statista, 2020). [Text removed for publication].

Her work also attracted the attention of the UK Government’s Centre for Data Ethics and Innovation ( S2) stating “ The research highlighted the need for Instagram and Tumblr to change how their recommendation systems work, to avoid suggesting dangerous content to vulnerable users”. Instagram and Tumblr have acted on all of the research recommendations.

Gerrard’s findings prompted multiple forms of impact for three beneficiaries: policymakers at Instagram and Tumblr, social media users who are suffering or recovering from an eating disorder, and members of the public. The significance of the impact is as follows:

Instagram: As a direct result of the media coverage Gerrard’s research ( R3) received, she was invited to become a member of Instagram and parent company Facebook’s Suicide and Self-Injury (SSI) Advisory Board, to contribute expertise to content policies about eating disorders ( S1).

[Text removed for publication]. Gerrard’s research brought to the Board:

• First, the research and its subsequent publicity – which influenced a BBC investigation ( S5) – [Text removed for publication] led to users searching a “much greater” range of hashtags. This information has decreased the number of pro-eating disorder posts on Instagram: [Text removed for publication]. Thanks to Gerrard’s interventions, this means fewer people are posting dangerous content to Instagram and are instead using the platform’s resources to seek help.

• Second, Gerrard’s research informed a new Instagram policy banning advertisements for weight loss products making ‘miraculous’ claims about their power to help people lose weight ( S6, S4). Gerrard was the only expert cited in Instagram’s press release, which said: “ We’ve sought guidance from external experts, including Dr Ysabel Gerrard in the UK, to make sure any steps to restrict and remove this content will have a positive impact on our community of over 1 billion people” ( S6). The Girlguiding charity was one of many organisations to highlight the value of the policy, saying “ every step like this helps build a world girls want to live in” ( S7).

• Third, the research led Instagram to transform how it recommends content to users on its Explore page (which shows users new images they might be interested in seeing) ( R1, R2, R3). [Text removed for publication]. As a result, Gerrard worked with Instagram to tighten the criteria a post needs to meet before it can be recommended to people. This will decrease the chance that users will be exposed to posts promoting eating disorders. [Text removed for publication].

Tumblr: Tumblr has changed its content moderation policies in two key ways as a direct result of Gerrard’s research. First, after an invited visit to meet with Tumblr’s CEO and key policy figures, the company changed how it recommends eating disorder-related content to its users: [Text removed for publication]. Without this research, Tumblr would not have taken urgent steps to reduce the risk that graphic content might appear on a users’ feed.

Second, Gerrard authored Tumblr’s resources for Mental Health Awareness Month ( S9). Almost 400 million Tumblr users can access Gerrard’s post to learn about eating disorders and be signposted to health services. [Text removed for publication].