Social Networks and Infant Mortality: the impact of bonding and bridging on birth outcomes for women from diverse backgrounds

Lead Research Organisation: University of Leeds
Department Name: Leeds Institute of Health Sciences

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
 
Title Parent diaries 
Description Two members of the Hope-Bradford group promoted diaries for parents with children on the neonatal unit as a way of capturing memories that would be particularly important if the child did not survive. One version of the diaries was in Urdu and adapted to include culturally appropriate material. They have both received media coverage on their work to support other parents and invitations to speak about the diaries at practitioner conferences 
Type Of Art Artefact (including digital) 
Year Produced 2013 
Impact The diaries have been implemented in a number of hospital neonatal units and promoted to parents 
URL http://www.icpcn.org/wp-content/uploads/2014/01/FINAL-Neonatal-Manchester-24.02.14.pdf
 
Description This study sought to explore the nature of social networks for maternal and child health for women from diverse communities. Findings highlight the extent to which relationships within women's networks support maternal and child health and empower pregnant women. The study also provides evidence about the kind of interventions that are suggested by women who have experienced an infant death and how effectively these can be translated into practice.
The study was conducted at two sites in the North of England with higher rates of infant mortality than the national average. Evidence was gathered through: a review of relevant literature; secondary analysis of national data; qualitative interviews with 10 key policy and practice actors at each site; qualitative interviews with bereaved and non-bereaved women and participatory research activity. An advisory group of healthcare providers, academics, maternity service users and individuals involved in commissioning oversaw the study.
Researchers interviewed 23 women from either African, Pakistani or teenage backgrounds who had experienced an infant mortality as well as 26 women from a range of ethnic backgrounds and ages who had felt well supported throughout pregnancy and up to the first year of their child's life. Interviews explored links between women and contacts in their personal networks who provided support during pregnancy and following birth. Both narrative and participatory research methods were linked with qualitative and Social Network Analysis. We analysed how women constructed their networks and the quality of relationships within these as well as the influence of socio-economic position, age, ethnicity and religious identity on maternity support that women received.
An empowering model of participatory research was adopted to set up Project Development Groups made up of bereaved women at each site. Group members had training and support to develop ideas about service changes that were needed, and to engage with key local professionals. The women were involved in presenting findings about support needs at two developmental workshops held to stimulate further service development. An evaluation of this participatory work was conducted. Dissemination activities for the study involved group members in conference, workshop and media presentations as well as writing up findings from the participatory phase.
FINDINGS
Perceptions and management of risk
A range of risk factors involving individual, biological and social issues were identified. Prematurity, low birth weight and deprivation affected all three groups. Bereaved women and their families often had poor knowledge of pregnancy complications and could delay reporting warning signs. Professionals often organised extra appointments, scans or admission to hospital in response to women's concerns, however, a number of minority ethnic bereaved women complained their concerns were not taken seriously, particularly in relation to labour admissions. The higher risk of prematurity in these groups did not appear to influence admission procedures; findings indicate a need for more sensitivity to warning signs such as bleeding and pain in these two groups.

• Bereaved women described uncertainty and a high level of reliance on professional advice, particularly in relation to first pregnancies. A number of women felt they had been failed by professionals who had undermined their concerns until a crisis had been reached. Missed opportunities to intervene effectively could occur in both primary and secondary care settings.
• A considerable disconnect existed, particularly at Site B, between the experiences bereaved women described and key informants' descriptions of risk factors, which focused heavily on issues external to maternity services.
• Parents' views about causation were not explored at either site as part of local reviews of infant deaths. Women's concerns about delays in admission during labour or other problems with care were therefore unlikely to be picked up in ways that could inform service development
• Specialist Teenage Pregnancy Midwives and the national Family Nurse Partnership offered long-term continuity of care, joined up provision and a high quality programme of support tailored to the individual needs of teenage mothers at highest risk. This level of support was not routinely available to Pakistani and African women and there was considerable potential to transfer aspects of this model of targeted provision to women who are at even higher risk of infant death.
• The implementation of NICE guidance (2010) in relation to pregnancy and complex social factors was lacking at both sites. The guidance highlights the need to commission dedicated staff; routine interpreting and coordinated care; joint training between agencies; and service development based on womens' satisfaction with services, from feedback gathered at antenatal appointments.
• Lack of language support could distress mothers at times when they were most vulnerable, some had to interpret for their husbands whilst being given news of their child's illness or death.
• There was little or no representation of women from the three higher risk groups in decision-making structures about maternity or child health services and no mechanisms to gain feedback from them. In addition, staff in maternity services did not represent the populations they served. Pockets of prejudice were felt by some respondents to affect the quality of support provided. We found no clear strategy to address this lack of diversity in mainstream settings.
• Staff from minority ethnic backgrounds who were employed in mainstream settings sometimes referred to feelings of exclusion and marginalisation which mirrored the feelings described by bereaved mothers. Findings suggest a need for greater leadership and prominence in valuing and promoting staff diversity within maternity services.
• Despite evidence of multifactorial explanations for the higher risk of infant mortality affecting Pakistani mothers, only congenital anomalies received significiant policy and research attention, particularly at Site B. The focus on difference alone meant that deprivation, infections and prematurity in this population were not given adequate attention.
• Community campaigns to raise awareness of genetic risk linked to cousin marriages did not increase access to support for consanguineous couples. Findings suggest that interventions to increase access to genetic screening and counselling that targets affected families are needed.

Sources and levels of support
• Over 80 potential sources of support were identified during the course of the study linked to family or personal networks, Community, Primary and Secondary healthcare, Local Authority and voluntary sector services as well as online websites and discussion groups.
• Findings suggest a lower priority in terms of provision to meet the needs of women from BME backgrounds as compared to teenagers. This was particularly noticeable at one of the sites involved in the study, where more than half of births were to women from BME backgrounds.
• Non-bereaved women tended to name more contacts in their networks than bereaved women despite having fewer health needs. Non-bereaved women had often proactively developed new sources of maternity support via local authority, specialist or voluntary sector services, whereas bereaved women accessed these services far less often.
• Almost all bereaved women, whether teenagers from White British backgrounds, Pakistani or African mothers, had networks that were similar in structure to each other and the same applied to almost all White British, Pakistani or teenage mothers who were non-bereaved.
• Bereaved women had networks of support that were more tightly knit than those of non-bereaved women and that contained a narrower range of contacts. The lack of new connections relating to pregnancy meant that bereaved women were far more dependent on primary care professionals to develop knowledge and support specific to maternity, rather than accessing this from a wider range of sources
• In terms of personal networks, non-bereaved women gave slightly higher average scores for Husband/Partner, Mother and Father but scored closest Friend more highly than any other actor. Sister and Brother appeared to be more common sources of support for bereaved mothers.
• Non-bereaved women rated GPs, midwives and health visitors more highly on average than bereaved women did in terms of support and contribution to wellbeing.
• There was a complex relationship between ethnicity, age and deprivation as Pakistani women and teenage mothers are both overrepresented in deprived areas. Deprived women tended to have more connections between actors in their network than more affluent women. A strong personal support network could mean that Pakistani women might not perceive a need to seek out alternative sources of support and professionals might also regard them as not requiring additional support.
• White British and Pakistani both usually had a tightly knit component of personal support within their network. However, White British women were more likely to have a range of other support sources that were not in touch with each other, giving them the ability to weigh advice from different sources and take up the support they felt was most valuable to them.
• Pakistani women were less likely to access antenatal groups as they often felt they already had access to the emotional support and tailored advice that non-bereaved women sought out from these groups. Bereaved women who had used antenatal classes felt these had not prepared them to recognise warning signs for the complications they experienced
• Interventions likely to improve access to information and support for women at higher risk are: (i) supporting women to build a broader range of support sources linked to maternity, beyond their immediate family and friends and (ii) increasing knowledge about risk factors amongst such women and the professionals who support them.
Relationships within women's networks
• Women rated personal contacts much more highly than professionals in terms of overall contribution to wellbeing. Friendships among the non-bereaved group tended to precede the pregnancy whereas it was common for non-bereaved women to establish new friendships through support networks linked to the experience of having a baby.
• Many White British non-bereaved women reported seeking out certain attributes in the friends they made such as shared preferences for feeding, parenting and working patterns. Some described their friendship group as a "tribe", suggesting a role in maintaining or shaping identity, and the friendship group was often a key source of informational and emotional support, as well as advocacy.
• Professionals' contribution to wellbeing was lower across both groups, but the most striking difference between the groups was for hospital midwife, where non bereaved women's average ranking was 6/10 whereas it was only 4/10 for the bereaved group. Primary care professionals were also scored more highly by non-bereaved women.
• The positive aspects of professional support which women valued included emotional support, empowerment, encouragement and reassurance, professionalism and trust, practical and information support and support in making decisions. Women appreciated staff who tailored advice and support to them, not just giving "textbook" answers. Continuity of personnel made such support more likely and easily accessible staff members were also highly valued.
• Many women were aware of constraints in terms of staffing numbers, but were very appreciative of any practical help they did receive, such as with infant care, in particular while in hospital in the postnatal period. Women and their families employed strategies to access the support they were seeking, whether through being consciously aware of their own manner and responses, remaining positive, or learning to speak up and ask for help and be assertive of their needs.
• Negative experiences of support from professionals included the impact of overstretched services on the support women received. Some women, in particular from the bereaved group, reported difficulties in asking for help or asserting needs, Many women, more usually in the bereaved group, also reported a lack of empathy from staff, and described feeling vulnerable during the birthing process. Some reported unfriendly or even a hostile manner from staff, with examples of discriminatory comments.
• Where a relationship of trust was not established, women reported feeling unable to ask questions and did not have access to additional resources which may have been lacking in their own personal networks, such as information support. Improved ethnic mix of staff and more widespread use of interpreters were highlighted as improvements which would make a big difference.

Supporting women to have a voice
• Participatory methods are an empowering way of helping women at higher risk of infant death to have a voice in how health and social care services are run. This study has shown that groups like HOPE are feasible and can have a considerable impact on service development.
• Of the 23 bereaved women who took part in the study, 10 took part in in the participatory phase, four at site A and six at site B. Women were keen to meet regularly, motivated by both the desire to make a difference for other women and families in the future and also for mutual support.
• The HOPE groups identified key priorities for action and produced documents outlining their ideas for what would help. Key priorities were identified in the areas of relationships, knowledge and service design. Women at both sites wanted to be listened to and taken seriously by professionals, not to feel judged or stereotyped and to have access to more bereavement support. In addition, being better informed about warning signs and having honest, clear and complete information were seen as priorities for improving knowledge. In terms of service design, women at both sites wanted more involvement in decisions around how services are run. At Site B, better interpreting provision, more resources in other languages, a better ethnic mix of staff and targeted support for women most at risk were additional priority areas.
• Inclusion of a group member who faced child protection issues was particularly challenging and researchers experienced pressure to replicate her previous experience of exclusion and not being heard.
• Training needs in communication and listening skills were identified and some training was provided. Researchers and trainers also worked with the groups to help make meetings more effective and encourage everyone's contribution. Where opportunities to speak about the women's ideas arose, such as radio interviews and conference presentations, the researchers sought to involve women. Seven HOPE members presented their personal experiences at a conference in Northern Ireland alongside the researchers who linked the stories to findings from the study.
• At both sites, HOPE members formed links with the Maternity Services Liaison Committee, although women had mixed experiences of meetings. At Site A, members got involved in an MSLC subgroup to improve bereavement support at the local hospital trust. They also worked with Public Health to tailor antenatal education material for women in higher risk groups. At Site B, a health visiting/ midwifery pathway for women at higher risk was developed and also a neonatal service user forum.
• Workshops were held at both sites to encourage more of this kind of activity. These were well attended by local practitioners and policymakers and HOPE members presented with researchers again. Further initiatives on interpreting provision, staff diversity and identifying women at higher risk in delivery suite triage were developed, as well as a range of other actions.
• Bereaved women's perspectives could sometimes be hard for professionals to hear, but those who did engage focused on drawing out lessons and on solutions rather than taking criticism personally.
• Evaluation of the participatory phase showed that women who took part appreciated the opportunity to be more involved in the research, and all felt more powerful as a result. All felt that they had been able to have a say in developing the aims and direction of the work. The conference in Northern Ireland and the developmental workshops were felt to have been very successful and worthwhile. There were mixed feelings at Site A, where some women were frustrated that change was slow to happen and that more had not been achieved. Women at Site B were more satisfied with the outcomes they had been able to achieve and with emotional support available to them, mainly because of differences in the way local practitioners engaged with the groups at each site.
• At both sites, women wanted to continue meeting after the research ended. This was raised at the workshops and support to continue was offered by Public Health partners working on infant mortality at Site A and by the National Childbirth Trust at Site B.
Exploitation Route Recommendations from Key Findings include actions for policy, practice and research. In addition the model of participatory research can potentially be applied to other public services such as education, local government and police services
Sectors Communities and Social Services/Policy,Education,Healthcare,Government, Democracy and Justice,Security and Diplomacy

URL http://www.esrc.ac.uk/funding/guidance-for-applicants/research-ethics/ethics-case-studies/case-study-participatory-methods/
 
Description At both sites involved in the study, the research has led to increased influence for women at highest risk of infant death in decision-making about how maternity and bereavement support services are run. The establishment of HOPE project groups, made up of bereaved women at both sites, impacted on women's own views of themselves as well as on the policy and practice settings which they sought to influence. HOPE members were supported to make critical and effective use of the research evidence, with a view to using these insights in the development of solutions to reduce inequalities in infant mortality. These solutions were piloted, with researchers facilitating the engagement of relevant stakeholders, and supporting women to 'bridge' with key actors in maternal health networks to enhance service and policy effectiveness. The study methods modelled the social and structural change needed to reduce inequalities in health and determinants of health for this social group and this model has been promoted as a means of engaging with such maternity service users in our dissemination activities. Using innovative methods, we have helped enhance participants' capacity, knowledge and skills to engage with social issues on which they have an important contribution to make. For example, where opportunities arose to speak about the study findings (including women's ideas about solutions) such as radio interviews and conference presentations, researchers sought to involve women, who co-presented and linked their personal stories to broader findings from the study. Women's capacity to engage with such activity was supported through formal training in relevant skills, involvement fees, childcare, travel and subsistence costs, which would otherwise have acted as barriers for many participants who juggled childcare, work (often low paid) and other responsibilities with a desire to get involved in the project. The HOPE groups also provided support for emotional and mental wellbeing, which was inaccessible to women from voluntary sector sources, and facilitated access to a range of other resources and opportunities (see bulleted initiatives below). Study methods helped avoid naturalising and reproducing the inferior position given to socially marginalised groups to ensure that bereaved women were not perceived simply as the objects of study and could contribute effectively, particularly those who had limited English and did not understand professional systems. The HOPE groups promoted and modelled engagement methods that were acceptable to participants, relevant to their priorities, involved reciprocal and equal relationships and respected different knowledge frameworks involved in the process. These methods have demonstrated an empowering means of engaging maternity service users from socially excluded groups. The study has shown in practice that groups like HOPE are feasible and can have a considerable impact on service development. All the women involved in HOPE said they felt empowered as a result and recognised the increased influence of having a collective voice and being aligned with a credible partner. Initially this alignment was with the University of Leeds, however as the study progressed more alliances and partnerships were developed and some of these continue to offer support. Support for HOPE meetings to continue after the end of the study was offered by a Public Health working group on infant mortality in Leeds and by the National Childbirth Trust in Bradford. Development of the HOPE groups has helped everyone involved in the participatory phase of the study reflect deeply on relationships influenced by social exclusion, in this case between healthcare professionals and women at highest risk of infant death. A wide spectrum of professional responses, ranging from enthusiastic engagement to hostility and attempts to undermine the study, were observed during the course of the research. Two workshops held in the final phase of the project were designed to attract and focus on responsive practitioners and policymakers; these workshops highlighted the transformational impact of the project through coproduction of knowledge and action by people coming together, listening to bereaved women and creatively working to address their concerns. It was heartening to see that a commissioner who had previously not been supportive of the study also attended this event and subsequently invited researchers to present at a policy meeting. This suggests that the momentum created by the study had made women's priorities more difficult to dismiss. Bereaved women's perspectives could sometimes be hard for professionals to hear, but those who most helpfully engaged with the HOPE groups focused on drawing out lessons and solutions rather than becoming defensive and taking criticism personally. Study findings discussed with health and social care professionals at HOPE meetings and dissemination activities have resulted in a number of local and national initiatives relating to maternity and birth outcomes including: • An enhanced care pathway for health visitors targeting women at highest risk of infant death. The pathway involves early liaison between Midwifery, Health Visiting and GPs, relationship building, listening effectively to service users, support to access other services and routine language support. • Work by the Haamla BME maternity project in Leeds to systematically improve access to maternity services for women from minority ethnic communities through screening antenatal records. Previously access had relied on self referral or referral via health professionals and many women who could have benefitted from Haamla support were unaware of the project. • Representation of HOPE members on the Maternity Service Liaison Committees at both sites, providing sustained opportunities for involvement in decision making and leading to a review of the way service users were involved at one of the sites • Establishment of a MSLC subgroup in Leeds to work on improvements to the Leeds Hospital Trust's bereavement support pathway • Changes to the way that national and local SANDS bereavement charity organisations engaged with women from minority ethnic communities and creation of the National SANDS Asian Outreach pilot project. The study PI was also asked for input to SANDS guidance documents on engaging with women from minority ethnic communities and on post mortem arrangements following death of an infant. • Enrolment on SANDS befriender training of a number of HOPE group members interested in supporting other women who had experienced an infant death including one member who needed language support to access this • Work by Public Health staff in Leeds on tailoring antenatal education for groups at highest risk of infant mortality through design of the Pregnancy, Birth and Beyond programme • Establishment of a Neonatal Service User Group at the Bradford Royal Infirmary, in association with BLISS, a national bereavement charity, as a result of HOPE meeting with a neonatal consulltant. BLISS has subsequently offered training and conference presentations opportunities to one group member, who was named as the hospital's Volunteer of the Year in 2014 • Promotion of parental diaries within the neonatal unit at one site based on findings about how valuable one member had found these at the time of her own bereavement. This parent has promoted the diaries to other Trusts and fundraised to ensure they are easily accessible and available in Urdu • Use of culturally appropriate resources from the national charity Children of Jannah, to provide bereavement support for Muslim parents in Bradford • Two HOPE group members have had articles relating to their experiences and activities published in online blogs, local newspapers and other publications • Feedback from a SANDS/Royal College of Midwives conference in Northern Ireland and at development workshops at both sites at which HOPE members presented their personal experiences alongside the researchers, indicated a powerful impact on audience members that would influence their future practice. • Development of an accessible bereavement support group in Leeds by HOPE members trained through Child Bereavement UK/SANDS - Joint teaching with HOPE members on the University of Leeds Nursing and Midwifery undergraduate curriculum and on the MSc in Clinical Research programme.
First Year Of Impact 2012
Sector Communities and Social Services/Policy,Education,Healthcare,Government, Democracy and Justice
Impact Types Cultural,Societal,Economic,Policy & public services

 
Description Chief Medical Officer report 2012
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact The Chief Medical Officer's Report for 2012 cited the HOPE groups established during the study as an example of good practice in preventative healthcare
URL https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/255237/2901304_CMO_complet...
 
Description Influence on commissioners
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact We held meetings with PCT commissioners and BDCT managers involved in the study and the following actions were agreed: * Commissioners would liaise with BDCT and CCG mental health leads to ensure that contracts and service specifications for mental health services include reference to the adapted therapy and make this easily accessible to Muslim clients with depression. * Training on depression organised by the CCG mental health leads and the Promoting Action on Clinical Effectiveness team would include sessions on findings from the study. * BDCT managers would organise a rolling programme of training for all supervisors in BDCT to ensure they can provide the necessary supervision for therapists delivering the therapy. This would initially be organised for PWP supervisors and then for CMHTs and secondary care psychologists, in collaboration with secondary care managers. Use of the therapy and outcomes would be monitored on System One and Rio. * Researchers would identify potential champions for the approach within each mental health team following initial training * Work on a proposed BA pilot training programme for practice nurses would involve the PI for this study to ensure it includes elements relating to cultural competence and involve staff from Sharing Voices/other relevant community mental health organisations. In addition, the treatment manual was made available on the websites of NHS and community partners with links to a detailed report describing methods, findings and implications for policy and practice along with an accessible summary targeted at service users and carers.
 
Description Influence on maternity policymaking groups
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Membership of a guidance committee
Impact Throughout the course of the study researchers contributed to decision-making and discussions in maternity policymaking groups at both fieldwork sites, such as the Maternity Services Liaison Committee and the Infant Mortality Task Group. Engagement with key policymakers and practitioners enabled many of the project ideas developed by HOPE groups of bereaved women to go ahead, improving access to services and experience of women from populations at higher risk of infant death. the work of HOPE members raised awareness and changed professional attitudes and promoted solutions to high rates of infant mortality formulated by women who had actually experienced an infant death. Women presented their experiences and ideas for solutions at a workshop that brought together key professionals who could act to make change happen at both sites. This raised awareness of those who attended and facilitated pooling of strategies and ideas about how solutions could be implemented .
 
Description Influence on maternity service practitioners
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
Impact Service development projects formulated by the two HOPE groups established during the course of the study stimulated activity that enhanced the quality of care provided to women at highest risk of infant death. Two research workshops at which women presented their narratives engaged powerfully with practitioners in ways that challenged existing stereotypes and negative attitudes.
 
Description Intervention related training
Geographic Reach Asia 
Policy Influence Type Influenced training of practitioners or researchers
Impact Professionals engaged with the study learnt how to make their practice more inclusive and tailored to the needs of service users relevant to the study. Training was linked to interventions developed during the course of the study and more generally through engagement events to present study findings and discuss ways forward.
 
Description Teaching medical, nursing, midwifery and healthcare research students at University of Leeds and students at Cambridge Muslim College
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact The PI and members of the hope group have run teaching sessions on the BA and MSc programmes at the University of Leeds for nurses, midwives and health care researchers. These have focused on ways in which healthcare practitioners can improve access to health services, develop inclusive practice and reduce or challenge discriminatory attitudes and behaviour within the healthcare workforce. The protocol for the ESRC study has also been used as an example of good practice for health care researchers on the MSc in Research Methods and at the University of Leeds. Feedback from students has indicated that they would use the evidence discussed in these sessions in their future practice
URL http://www.cambridgemuslimcollege.org/diploma/lecturers/
 
Description Grand Challenges Research Fund
Amount £150,000 (GBP)
Organisation Economic and Social Research Council 
Department ESRC-DFID Joint Fund
Sector Public
Country United Kingdom
Start 01/2017 
End 06/2018
 
Description Research capability funding
Amount £31,700 (GBP)
Funding ID RCF/046 
Organisation National Institute for Health Research 
Department NIHR Clinical Research Network (CRN)
Sector Academic/University
Country United Kingdom
Start 12/2013 
End 03/2014
 
Description Seedcorn Funding: interdisciplinary workshops to address health and social inequalities
Amount £2,000 (GBP)
Organisation University of Leeds 
Sector Academic/University
Country United Kingdom
Start 03/2016 
End 06/2016
 
Title Participatory research 
Description I have drawn on my work with the HOPE groups to develop teaching good practice for involving vulnerable participants in research without replicating social exclusion 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2013 
Provided To Others? Yes  
Impact I have taught Masters level students midwifery, nursing and dietetics students within formal programmes at the University of Leeds how to involve service users in their research, drawing on lessons from this study 
 
Title Participatory research case study 
Description I have developed a Case Study for ESRC on participatory research as part of its materials on Research Ethics as guidance for other researchers. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2015 
Provided To Others? Yes  
Impact ESRC investment managers have contacted all investments (including IAA and DTC Directors) to make them aware of the materials 
URL http://www.esrc.ac.uk/funding/guidance-for-applicants/research-ethics/ethics-case-studies/case-study...
 
Title Hope groups 
Description A participatory research group of bereaved women respondents was established to support analysis of qualitative data from earlier phases of the study. The ESRC also promoted the model to other researchers as an example of ethical research practice 
Type Of Material Data analysis technique 
Year Produced 2015 
Provided To Others? Yes  
Impact Service development projects formulated by the two HOPE groups established during the course of the study stimulated activity that enhanced the quality of care provided to women at highest risk of infant death. Two research workshops at which women presented their narratives engaged powerfully with practitioners in ways that challenged existing stereotypes and negative attitudes. Outcomes included: - pathway for women from Pakistani and African Caribbean backgrounds based on models already developed for teenage mothers -?a joint training event for health visitors and midwives on accessible/appropriate bereavement support -? representation of group members at the Maternity Services Liaison Committee and at a neonatal services users' support group they initiated -?group members receivedSands (Stillbirth and Neonatal Death Society) bereavement support training and fed into the organisation's work on improving access for minority ethnic parents -? support for a group member in relation to safeguarding has involved raising issues highlighted by her case with commissioners, care providers and advocates -? training/capacity development for group members has included sessions on communication/media skills and involvement in local and national dissemination activity. A member of HOPE Leeds appeared on Radio 4's 'Woman's Hour' and members of both groups will contribute to local developmental workshops and a national Sands conference. 
URL http://www.esrc.ac.uk/funding/guidance-for-applicants/research-ethics/ethics-case-studies/case-study...
 
Title SNIM NVivo and SNA database 
Description An anonymised database of semistructured and narrative interviews and SNA data related to the study as well as key papers has been submitted to ROS 
Type Of Material Database/Collection of data 
Year Produced 2013 
Provided To Others? Yes  
Impact none yet, only recently made available to other researchers on Researchgate 
URL https://www.researchgate.net/profile/Ghazala_Mir/publications?pubType=dataset&ev=prf_pubs_dat
 
Description Involvement in a European consortium application for H2020 funding 
Organisation National Institute of Health and Medical Research (INSERM)
Country France 
Sector Academic/University 
PI Contribution I contributed to development of a proposal developed by 13 partners across 10 European countries: InterROAM "Interventions to improve Reproductive Outcomes Among Migrant women". Members of the consortium were drawn from the Reproductive Outcomes and Migration international research collaboration
Collaborator Contribution Gave feedback and/or contributed to the research design and proposal
Impact intention to resubmit the proposal for the next round of H2020 health funding later this year.
Start Year 2016
 
Description SNIM partners 
Organisation Bradford District Care NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Bradford Institute for Health Research (BIHR)
Department Born in Bradford
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Bradford Teaching Hospitals NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Bradford and Airedale Teaching Primary Care Trust (PCT)
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Department of Health Social Services and Public Safety (DHSSPS)
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Hope Housing
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Leeds Community Healthcare NHS Trust
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Leeds Primary Care Trust (PCT)
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description SNIM partners 
Organisation Leeds Teaching Hospitals NHS Trust
Country United Kingdom 
Sector Public 
PI Contribution Researchers led development of the proposal and funding application, conducted fieldwork activity, organised partnership events and meetings and facilitated involvement of partners in research activity and dissemination.
Collaborator Contribution Trust partners supported development of the initial proposal and protocol for recruitment and dealing with distress. They also helped recruit women for the research sample, attended advisory and local collaborators steering group meetings, engaged with the 2 groups of bereaved women established at each site and supported research workshops and final conference activities. Some partners went further to stimulate service development within their own Trusts in response to bereaved women's priorities. Partners at the Department of Health attended advisory group meetings and advised on national policy and strategy. they were instrumental in supporting dissemination of the HOPE-group as an example of good practice in preventative healthcare. Hope group members attended three-hour meetings at 3 to 4 week intervals in which bereaved women validated research findings, developed priorities for service development and engage with key professionals to negotiate future action. Women in these groups also worked alongside researchers to disseminate findings and increase the impact of the study.
Impact All of the impact outcomes from the study relating to health service development have involved study partners. The partnership was multidisciplinary involving academics, service users, health care policy makers and commissioners as well as healthcare practitioners from midwifery, neonatal, nursing and health visiting services.
Start Year 2009
 
Description University of Dundee proposal 
Organisation University of Dundee
Department College of Medicine, Dentistry & Nursing
Country United Kingdom 
Sector Academic/University 
PI Contribution Contributed to joint HTA research proposal on providing care and support for bereaved parents led by University of Dundee. Offered research advice and support on the cultural appropriateness of the package of care for diverse communities, contribution to analysis and interpretation of findings, dissemination and publications. HOPE group established during the ESRC funded project agreed to act as an Expert Advisory Group amnd support recruitment of participants from diverse ethnic and socio-economic populations and
Collaborator Contribution led by Dundee and involving other researchers from University of Leeds (GM), Edinburgh Napier University, NHS Education Scotland, NHS Lanarkshire, NHS Tayside, NHS West of Scotland and Stillbirth and Neonatal Death organisation (SANDS): Lead applicant - University of Dundee Expertise: health services researcher and midwife, with 8 years' experience of qualitative research on experiences of maternity care of vulnerable women (funded by DHPRP, NICE, NIHR, Save the Children), and of systematic reviews and consultation methods as well as project management and strong local and national professional and service user networks. She is PI of a study funded by DH PRP to explore how trust can be enhanced between Gypsy/Travellers and mainstream health services. Co-ordinating the research activities; planning and execution of the project, managing the work of the research fellow; co-ordinating dissemination activity, ensuring all milestones and reporting requirements are met and managing the research budget. Lead for work package 1 and support for PPI Co-applicants, University of Dundee 2-Lead for work package and stakeholder advisory group, research advice and support; contribution to analysis and interpretation of findings, dissemination and publications 3-Quantitative and qualitative evidence syntheses. Experience of systematic reviews for: NICE, CSO (Scotland); SDO and the Cochrane Collaboration. 4- Research advice and support with development of a manualised approach, proposed psychometric outcomes for the framework for definitive evaluation, contribution to analysis and interpretation of findings, dissemination and publications 5. Edinburgh Napier University Lead for work package 2, research advice and support, contribution to analysis and interpretation of findings, dissemination and publications 6. NHS Education Scotland. Expertise: leads maternal health educational projects in Scotland at NES. Her role focuses on the development of relevant, interactive and evidence based e learning and face to face modules for professionals. Recent developments include a fetal alcohol harm resource and a Sudden Unexpected Death in infancy e learning resource. The 'One out of Four' project, which won the RCM partnership working award 2015, has developed an e-learning module, with an accompanying workshop facilitator pack and films to support high quality care for women survivors of sexual violence. New e learning modules on maternity bereavement care and maternal mental health will be launched in May 2015. Role: research advice and support with a particular focus on multi-disciplinary staff training components of the package of care, contribution to analysis and interpretation of findings, dissemination and publications. Facilitate contribution of the Scottish Government sub-group on maternity bereavement, a multi-agency, multi-disciplinary group that brings together service user, voluntary sector and health service representatives to work to improve the provision of maternity bereavement services in Scotland 7. NHS Lanarkshire Specific advice and support with recruitment of obstetricians, advising on the content of the package care from an obstetric perspective, dissemination to obstetricians and contribution to publications 8. West of Scotland Mother & Baby Unit Specific advice and support with ensuring the package of care is fit for purpose to identify when parents need to be referred for specialist psychiatric support and contribution to publications 9. NHS Tayside Specific advice and support with recruitment of GPs, advising on the content of the package of care from the perspective of GPs, dissemination to GPs and contribution to publications 10 SANDS - expertise and contacts in relation to parental perspectives on bereavement support following a neonatal death
Impact Outline and full proposals submitted but bid was not successful. Multidisciplinary team described above
Start Year 2015
 
Description joint publication in progress 
Organisation Iowa State University
Country United States 
Sector Academic/University 
PI Contribution Joint publication on use of participatory methods with bereaved women
Collaborator Contribution As above. The paper is being led by Iowa State contributor and supported by a University of Sheffield collaborator also
Impact paper in progress. Disciplines represented are medical sociology (GM), psychology and nursing
Start Year 2015
 
Description joint publication in progress 
Organisation University of Sheffield
Country United Kingdom 
Sector Academic/University 
PI Contribution Joint publication on use of participatory methods with bereaved women
Collaborator Contribution As above. The paper is being led by Iowa State contributor and supported by a University of Sheffield collaborator also
Impact paper in progress. Disciplines represented are medical sociology (GM), psychology and nursing
Start Year 2015
 
Title Strategies to reduce infant mortality developed by bereaved women 
Description A range of strategies developed by bereaved women in the HOPE groups to improve the quality of maternity services for women at higher risk of infant death 
IP Reference  
Protection Protection not required
Year Protection Granted
Licensed No
Impact The strategies have been disseminated and promoted to maternity care practitioners and the HOPE group itself has been promoted as an example of good practice in preventative healthcare by the Chief Medical Officer (see https://www.gov.uk/government/publications/chief-medical-officers-annual-report-2012-our-children-deserve-better-prevention-pays)
 
Title Health Visitor Enhanced Pathway 
Description An enhanced Health Visiting pathway was developed by practitioners involved in the study in response to study findings. Follow on funding has enabled me to conduct a systematic review of interventions to improve birth outcomes in populations of women at higher risk of infant death and to gauge support for these from a range of stakeholders. I intend to seek further funding to develop an intervention that draws on both these sources that can be piloted and trialled in maternity services settings. 
Type Health and Social Care Services
Current Stage Of Development Initial development
Year Development Stage Completed 2013
Development Status Actively seeking support
Impact Development of the pathway has led to increased awareness amongst health visitors and recognition of the need to work more closely with midwives 
 
Title Hope groups 
Description The Hope groups were established as a means for identifying and meeting the needs of women at highest risk of infant death. Their work with maternity service practitioners and policymakers led to considerable interest and response in addressing their needs. The model developed for has potential for testing as part of a clinical trial to evaluate its impact on birth outcomes and well-being of women from these populations. The PI will be seeking to develop such a proposal in 2016. 
Type Products with applications outside of medicine
Current Stage Of Development Refinement. Non-clinical
Year Development Stage Completed 2014
Development Status Actively seeking support
Impact The groups helped to identify key priorities to take forward with practitioners for maternity service development and met with these practitioners individually and during development workshops at which they presented their experiences and ideas for what needed to change. This stimulated a number of new initiatives in local services and the model, which facilitated the input of women from seldom heard groups into policy and practice decision-making, was mentioned in the 2013 Chief Medical Officers report as an example of good practice. The ESRC also promoted the model to other researchers as an example of ethical research practice 
URL https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/255237/2901304_CMO_complet...
 
Title Obstetric intervention to improve feedback from women at higher risk of infant death 
Description A consultant obstetrician engaged with the study at one of the fieldwork sites has begun to develop work aimed at improving feedback from women at higher risk of infant death during antenatal clinics. This intervention aims to obtain and use feedback in order to inform service development aimed at reducing infant mortality rates within these populations 
Type Health and Social Care Services
Current Stage Of Development Initial development
Year Development Stage Completed 2013
Development Status Under active development/distribution
Impact The intervention was still in development when the study ended, however the consultant obstetrician has been involved in follow-up work reviewing effective interventions and is interested in supporting further activity to develop and pilot a targeted intervention 
 
Title Targeted support for women at highest risk of infant death 
Description With follow on funding from West Yorkshire Clinical Research Network, I have undertaken a systematic review of interventions to improve birth outcomes in women from groups at highest risk of infant death. I have also gained feedback from a range of practitioners and from women involved in the HOPE-groups established by my study on the feasibility and acceptability of diverse interventions. I intend to develop a research proposal to further develop a targeted intervention based on this initial activity that can be piloted and trialled with these populations. 
Type Health and Social Care Services
Current Stage Of Development Initial development
Year Development Stage Completed 2014
Development Status Actively seeking support
Impact Members of the HOPE-groups were supported to contribute to the development of the intervention, ensuring the service user perspective remains privileged in this follow-on work 
 
Description BPCT - Infant mortality and Pakistani communities : social, genetic or what? 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Workshop exploring broader explanations for infant death alongside genetic factors, at an event run by Bradford Working in Partnership, NHS Airedale, Bradford and Leeds and NHS Kirklees, entitled "Raising awareness of genetics amongst culturally diverse communities".

A report of the event included details of the research and discussion relating to genetics and infant mortality
Year(s) Of Engagement Activity 2012
URL http://www.bradford.gov.uk/bmdc/bdp/our_work/every_baby_matters/news_events_resources
 
Description Birkbeck, University of London (Geography, Environment and Development Studies) Social Networks and Infant Mortality 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact This invited presentation contributed to Birkbeck seminars on innovative research methods. The seminar sparked discussion on the role of research in supporting service development within health services and on participatory methods as a means of facilitating representation and empowerment amongst underserved populations. Postgraduate student feedback suggested the presentation will influence future thinking and approaches to research.
Year(s) Of Engagement Activity 2016
URL http://www.bbk.ac.uk/events-calendar/bisr-methods-lunch-social-networks-and-infant-mortality
 
Description Cambridge Muslim College - Health of Muslims in Britain 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact I regularly lecture on the diploma course at Cambridge Muslim College to provide an overview of the health of Muslims living in the UK. My lecture covers findings from a range of research studies, including my own. Students invariably provide excellent feedback in terms of greater understanding of social and structural issues influencing health within this population. I am also regularly asked to provide advice and signposting for students wishing to pursue an academic career
Year(s) Of Engagement Activity 2012,2013,2014,2015,2016
URL http://www.cambridgemuslimcollege.org/programmes/diploma/lecturers/
 
Description EUPHA - Social Support and Birth Outcomes in Women from Diverse Backgrounds 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Talk sparked questions and discussion in a themed workshop on birth outcomes at the conference. I made further links with European researchers working in my field

This presentation was linked to my joining an international research group on reproductive outcomes which met immediately afterwards. I was able to discuss ways of taking the research forward through publication and further participatory studies with other academics at both these events
Year(s) Of Engagement Activity 2014
URL http://www.eupha-migranthealthconference.com/
 
Description European Public Health Conference, Supporting Women at Highest Risk of Infant Death Symposium Speaker 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact This conference symposium on participatory research and health aimed to promote best practice and in-depth dialogue about the benefits and challenges of using participatory methods. 40 participants learnt from each other's experiences in order to inform their future practice
Year(s) Of Engagement Activity 2016
URL https://ephconference.eu/repository/conference/2016/Programme_Book_Vienna_2016.pdf
 
Description Festival of Science - Tackling Inequalities: Linking Voices for Social Justice 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact As Chair of the Inequalities Research Network at University of Leeds, I was responsible with other steering group members for organising a national high profile, multidisciplinary conference exploring the role of research in reducing social inequalities. A conference report outlining recommendations for future research in this area is currently being produced in order to influence academics, research commissioners and other key stakeholders. The conference involved keynote presentations from very high profile speakers, followed by practitioner and voluntary sector responses to the research and workshops at which future research direction in specific areas of inequality was discussed. The event led to a considerable increase in the number of people who have joined the Inequalities Research Network, a strategic platform for multidisciplinary, intersector collaboration in research.
Year(s) Of Engagement Activity 2016
URL https://lssi.leeds.ac.uk/event/lssi-event-tackling-inequalities-linking-voices-for-social-justice/
 
Description Health Inequalities Research Group workshop University of Leeds 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Talk sparked discussion in interdisciplinary group of academics

My peers at the university have suggested collaborating to build on findings from this and other studies
Year(s) Of Engagement Activity 2014
 
Description International Conference Symposium 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The PI organised a symposium on 'Using participatory methods to identify service developments for improving maternal and birth outcomes'
at the International Qualitative Health Research 2015 Conference in Toronto, Canada. This presented the findings from this study and two other related research projects led by researchers at the University of Alberta, Canada and the University of Sheffield, UK in order to identify general lessons for policy, practice and research methodology. Two bereaved women involved in the study were involved in the process of developing and delivering the presentation and the PI obtained funds for them to travel to Canada for this purpose.

This symposium explored the opportunities and challenges of using participatory and other coproduction methods to understand inequalities in maternal and birth outcomes and stimulate action to reduce these. Common themes focused on the failure of policy directives and interventions to reach women who experience the worst health outcomes despite stated concern to reduce levels of maternal and infant mortality in various international settings, . The causes of the inequalities were highlighted as complex and contested and such women are most often perceived as the recipients of necessary support rather than key actors for the development of services and health interventions. The symposium presented methodological approaches that helped avoid naturalising and reproducing the inferior position given to women from marginalised groups and the unequal social relations that disadvantaged them in the UK and South Asia. Discussion of findings considered how these studies might contribute to development of a complex intervention to improve birth outcomes of cross national relevance. Time was allocated in the symposium for questions and discussion and the links developed led to work on a joint publication about participatory methods with a researcher at Iowa State University in the US.
Year(s) Of Engagement Activity 2015
URL http://www.iiqm.ualberta.ca/Conferences_and_Workshops/~/media/International%20Institute%20for%20Qual...
 
Description LEEDS IM STRATEGY CONFERENCE 2011 Infant Mortaltiy and Social Networks - project overview 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Policymakers/politicians
Results and Impact The presentation raised awareness of the study at the beginning of the project and enabled me to make links with key policymakers and practitioners at one of the sites

I was invited to attend the Infant Mortality Strategy Group at this site and the chair of this body became a member of the project advisory group
Year(s) Of Engagement Activity 2011
 
Description Leeds IM Task Group 2012 Inequalities in Infant Mortality: perpetuated in policy and practice? An introduction to the Infant mortality and social networks study including participatory phase 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presentation at city wide infant mortality task group meeting, Leeds, reviewing infant mortality policy and initial findings from interviews with high risk bereaved women,

I was invited to participate in the local Infant Mortality Task Group meetings and update them about study findings at regular intervals
Year(s) Of Engagement Activity 2012
 
Description Leeds MSLC 2013 - Infant Mortality and Social Networks: Perspectives on Bereavement 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presentation of emerging data from analysis of key informant interviews and interviews with bereaved women from high risk groups, focussing on perspectives on bereavement support. This presentation was given to the Maternity Services Liaison Committee, a forum for service users and Professionals working in maternity services in Leeds.

A subgroup has been formed to develop a bereavement pathway across primary and secondary care following the meeting; this is in progress.
Year(s) Of Engagement Activity 2013
 
Description Policy group presentations - Infant Mortality and Social Networks 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact presentations to various policymaking groups at both fieldwork sites including the Maternity Network, Maternity Services Liaison Committees and Infant Mortality Strategy Groups

The presentations were invited or organised to inform decisions about strategic plans to reduce infant mortality in the fieldwork sites. The Leeds IM Strategy Group agreed to continue support for the HOPE-LEEDS group of bereaved women established during the study to continue. The Bradford Maternity Services Liaison Committee also continued the membership of two HOPE-Bradford members and responded to their critique of existing meeting formats, committing to more accessible meetings and influence for service users in future
Year(s) Of Engagement Activity 2013
 
Description RCM/SANDS 2012 -Inequality and infant loss: identifying the gaps in women's support networks 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This presentation was given at a national conference organised jointly by the charities Sands, Bliss and the Royal College of Midwives in September 2012 at the Brunei Gallery SOAS, London. Emerging findings were presented from interviews with key informants as well as bereaved women from high risk groups, focussing on perceptions of social support from different professionals within maternity support networks.

Following the presentation I discussed with SANDS conference organisers the need to be more inclusive of women from higher risk groups in the national bereavement support groups offered by the charity. As a result the organisation began work to research the support needs of women from South Asian backgrounds and ran a focus group with women involved in our study. SANDS has since then established the 'Asian Outreach Project' at a number of sites across the UK to make their support more accessible to S Asian women and I have acted as a consultant for this activity. Bereaved women from our study have also put themselves forward for SANDS befriender training to support other women who experience an infant death as a result of being introduced to SANDS.

I also negotiated with conference organisers the possibility of bringing back study participants the following year to present research findings alongside the researchers. I subsequently arranged for 7 bereaved women to travel to Antrim, N Ireland in 2013 and 5 to travel to London in 2014 to present their stories at the national conference with travel expenses paid by SANDS and the Royal College of Midwives.
Year(s) Of Engagement Activity 2012
 
Description RCM/SANDS 2013 - Inequality and Infant loss: Identifying the gaps in women's support networks 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation at a conference organised by the Royal College of Midwives and Stillbirths and Neonatal Death charities, SANDS by project researchers and bereaved women involved in the study

Feedback at and following the conference suggested powerful impact of the bereaved women's narratives on practitioners. Researchers and study participants were invited to present again at the national Royal College of Midwives/SANDS/BLISS conference the following year. One study participant who had been instrumental in promoting parent diaries in neonatal units was invited to speak at two conferences and went on to engage with considerable media attention about this initiative and her work with the neonatal unit/BLISS charity.
Year(s) Of Engagement Activity 2013
 
Description ROAM - Targetted support for women at highest risk of infant death 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact participants discussed overlapping research areas and activity

interest from other academics in the study led to discussions about possible future joint collaboration on birth outcome interventions that could be trialled in practice
Year(s) Of Engagement Activity 2014
URL http://migrationandreproductivehealth.org/?page_id=76
 
Description Radio 4 interview on Woman's Hour 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Radio 4 interview on Woman's Hour 29 April 2013

I was invited to contribute a case study to the Chief Medical Officer's report relating to preventing poor birth outcomes
Year(s) Of Engagement Activity 2013
URL https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/255237/2901304_CMO_complet...
 
Description SANDS 2014 Supporting Women at Higher Risk of Infant Death 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Members of the HOPE groups at both fieldwork sites were supported to deliver a presentation about their experiences as bereaved mothers and as members of the HOPE groups. They reported positive feedback about how powerful and moving their stories were

One of the HOPE group members has been invited to give a presentation to a Trust that is interested in setting up a similar group.
Year(s) Of Engagement Activity 2014
URL https://www.uk-sands.org/news/news-release/2014-09-16/uncertainty-and-loss-maternity-and-neonatal-ca...
 
Description SUPPORTING WOMEN AT HIGHER RISK OF INFANT DEATH CONFERENCE 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Final project conference at which project findings were presented by bereaved study participants and research team members. Workshops linked to key themes of the study were also held by nationally recognised groups and local professionals who had supported service development activity.

Invitations to contribute to research proposal by academic at another university; meeting/telephone conversations with Strategic Lead for Children and Young People at NHS England re implications for service development. Invitation from local commissioners to present findings at commissioning group meetings
Year(s) Of Engagement Activity 2014
URL http://medhealth.leeds.ac.uk/info/647/research/352/social_networks_and_infant_mortality
 
Description Trouble up North -Infant Mortality and Social Networks: Perspectives on Bereavement 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact A lecture given at Trouble Up North: the North Trent and Yorkshire Neonatal Networks Conference, Wakefield, presenting emerging data from analysis of key informant interviews and interviews with bereaved women at highest risk of an infant death. The focus was on experiences of the loss of a baby and in particular on bereavement support.

After this presentation a neonatal consultant who helped organise the event was invited to speak to the HOPE Group of bereaved women participating in the study. As a result of this meeting he agreed to establish a service users group in the Neonatal Unit in which one of the HOPE members took a leading role. This subsequently also led to the HOPE member training as a volunteer for BLISS the national bereavement support charity and offering support to other bereaved women in Bradford Royal Infirmary.
Year(s) Of Engagement Activity 2012
URL https://www.regonline.co.uk/builder/site/default.aspx?EventID=1070573
 
Description University of Bradford, Centre for Diversity and Inclusion How can we achieve culturally competent services? 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This invited presentation attracted around 40 participants interested in learning how to make health and social care services more inclusive of minority ethnic and religious groups. The two-hour slot supported considerable discussion and exchange of views between the audience members as well as with myself. Participants set action points for themselves at the end of the session which they plan to revisit at a time they themselves specified within their own calendars.
Year(s) Of Engagement Activity 2016
URL http://www.iedp.org.uk/index.php/news-main/news/175-diversity-challenge-seminar-bradford
 
Description WHM - Inequalities in Infant Mortality: Perpetuated in Policy and Practice? 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presentation of a review of national and local infant mortality policy as it pertains to the highest risk groups at Women's Health and Equality Consortium roadshow event: Women's Health, Women's Voices, hosted by Women's Health Matters, Leeds based charity.

The activity supported networking with key professionals in the voluntary sector, including the Chair of the Maternity Services Liaison committee at the fieldwork site in which the conference was held
Year(s) Of Engagement Activity 2012
URL http://www.womenshealthmatters.org.uk/wp-content/uploads/latest_newsletter.pdf
 
Description seminars at LIHS 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Two seminars to other researchers in the Leeds Institute of health sciences on the use of participatory research methods to reduce health inequalities
Year(s) Of Engagement Activity 2015