Inequalities in Infant Mortality: perpetuated through policy and practice?

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Derick Blair
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1 Leeds Institute of Health Sciences Inequalities in Infant Mortality: perpetuated through policy and practice? Dr Ghazala Mir Dr Katie Spicer NHS Airedale, Bradford and Leeds; Leeds Teaching Hospitals Trust; Bradford Teaching Hospitals Trust; Bradford District Care Trust; Leeds Community Health Trust ESRC Grant Ref: RES

2 Background Social exclusion and inequalities in infant mortality UK rates of infant mortality for mothers born in Pakistan, the Caribbean and teenage mothers are 100%, 63% and 60% higher than the national rate respectively Risk reduction strategies suggested include optimising maternal and mental health and addressing environmental stressors (DH 2007), improved services and increased social support for women at risk

3 Infant Mortality and Social Networks: Plan of investigation Four phases: Explore the current evidence, policy guidance and local context (Leeds and Bradford). Recruit and interview women from a range of backgrounds in two matched groups (30 at each site) who have (i) experienced an infant death (ii) a child over one year old Analyse data using quantitative and qualitative methods. Project development group aimed at finding solutions to the problems identified using participatory research methods

4 National Infant Mortality Policy and Ethnicity Infant Mortality as a component of NHS plan (2000) 2002 National Health Inequalities PSA target and infant mortality action plan a key part of public health strategy Main focus of target is socio-economic inequality However, recognition within 2007 Dept of Health review of target that certain groups such as women born in Pakistan, Caribbean women and teenagers have significantly higher risk

5 SCARF diagram From NHS Airedale, Bradford and Leeds Infant Mortality Bulletin, Jan 2012

6 Scarf diagram does it help? Key focus of national policy on infant mortality Centred around seven interventions targeting women from R&M group Significant impact on shaping of local policy Interventions may have an impact on some risk factors for teenage mothers Arguably don t directly address issues facing women from high risk BME groups Risk of perpetuating inequality in infant mortality for those at highest risk

7 National and Local Policy and Ethnicity Recognition within DoH review of significance of interplay between poverty and ethnicity Yet not reflected in key targets as outlined in scarf diagram Genetics service in Blackburn given as good practice example, among other case studies Risk of obscuring significance of complex interaction of socioeconomic status and other factors around access to care in causal pathways for IM

8 Quality and type of support presence of a birth companion (Sosa et al 1990) Perceived quality of support from all sources impacts more on health outcomes than frequency of support (Oakley et al, 1994) significantly affects health outcomes support from partner, family and friends (Austerberry et al 2007) connectedness in social network gives access to material and informational resources but network may reflect poverty and disadvantage/ lack of resources (Gayen and Raeside 2007)

9 Support for women at risk Joint RCOG/RCM guidance (2010): components of access to routine antenatal care for vulnerable women: Physical access - uptake of services, measurable but does not guarantee appropriate or optimal care Cognitive or mental access includes communication, overcoming mistaken assumptions, prejudices and ignorance about different backgrounds and cultures, sensitivity, understanding and empathy Both aspects essential to relationship of trust

10 Support for women at risk Women from minority ethnic groups more likely to be left alone during labour and report being worried by this later booking (links to inequalities in prenatal testing (Smith et al, 2011)) less awareness of choices around maternity care less trust and confidence in staff training needs of health care professionals include effective communication and skill gaps (Health Care Commission review (2008); NPEU survey (2010); Chevannes 2002))

11 Genetics and infant mortality Cousin marriages perceived as key issue for Pakistani women equated with cause of genetic anomalies 4 x higher risk of infant death from CA in Pakistani babies 96% of consanguineous couples will not have an affected child Socioeconomic /ethnic inequalities for 9 fatal anomalies disappear if terminations counted (Smith et al 2011) Complex area with lots of uncertainty (Kurinczuk 2010) need for more nuanced approaches

Women s views: quality of support Overstretched services: difficulties contacting a midwife for advice long waits to see senior staff delayed/rushed assessments of women in labour bed shortages

12 Women s views: quality of support Overstretched services: difficulties contacting a midwife for advice long waits to see senior staff delayed/rushed assessments of women in labour bed shortages influencing treatment/discharge It just didn t put me as a client in a position where I felt comfortable even to talk about things and to ask questions...the way I see it is that they are too busy, they have got too many clients to cope with you, but then you begin to wonder. The next time you get the same approach you conclude that it is the professional s way of working - their culture of approach to work? Or is it something to do with the client they are dealing with...you are not sure which is which. (JS, African participant)

Capacity to support Nobody says to you: how are you managing? Are you coping? Are there any questions you want to ask? Is there anything you are having problems with?

13 Capacity to support Nobody says to you: how are you managing? Are you coping? Are there any questions you want to ask? Is there anything you are having problems with? You know there is this, this and this support out there... Nobody has got two minutes to spare to stop and say that to you. That s the most important thing in the whole process. And they haven t got time for that. (GSH, Pakistani participant) I mean ideally (there) would be recruitment of more ethnic minority staff, you know, to deliver services for people who understand their own cultures and backgrounds, and also it would be a little bit easier for them to approach service providers as well (SS, Pakistani participant) Books written mainly for White people and not an Asian person who is a Muslim, or African or Chinese women (who) know about their culture... (GSH, Pakistani participant)

Feeling vulnerable during the birthing process Difficulties in asking for help or asserting needs Feeling that staff were dismissive of their concerns Failure to admit in time/ incorrect advice to

14 Feeling vulnerable during the birthing process Difficulties in asking for help or asserting needs Feeling that staff were dismissive of their concerns Failure to admit in time/ incorrect advice to stay at home Maybe if they had helped us before and done my operation the day before...maybe she could have lived...i just think that they didn t pay much attention to me. It should have been: she is in labour, how is she going to deliver... FP rushed to theatre the next day after senior doctor assessed her, but too late to save her baby. Poor use of language support (FP, Pakistani participant) Interpreters frequently not used/family members used instead Women could be required to translate for partners whilst in labour/during consultations about child s health/death

15 Lack of empathy I tell you, the most sympathy and support I had was the cleaner. Believe it or not...i don t know how she found out, and she came and said: Oh, I heard, I lost my son when he was seven years old, and she, she hugged me, and you know, I couldn t, you know, believe it, you know, like this woman I didn t know, I didn t know her at all and she comforted me, you know, she was there 10 minutes but it meant the world to me... (SS, Pakistani participant) AA (a Pakistani participant) felt intimidated and threatened after the death of her child by a midwife who was racist, very patronising, insensitive and unkind. Other staff closed ranks and didn t escalate her complaint.

16 Whose agenda? For me my (midwife) appointments were like a waste of time because the impression I got was it was more to help her just do her paper work and tick tick what she needed to tick, but not so much to benefit me as the person who has fallen pregnant for the first time with twins- to help me understand...what changes and what possibilities I should expect- because that s what I expected a midwife to tell me. [ ] I was really relying on the midwife to help me but all I was told was carry on life as normal [ ] I am a very active person and obviously I have fallen pregnant after 40 years, so I think I should have been cautioned a little bit somewhere...[ ] I think it might have helped me prevent premature labour if that information was given. (JS, African participant)

17 Poor knowledge of services [I] didn t know what to expect from the service, or you know, what was available to me, what my rights were, and as a patient, you know, there were certain things that I had a right to access, but I weren t aware of that, [ ] I think it s the lack of knowledge and lack of understanding that is the greatest barrier... (SS, Pakistani participant) Partners and family were often also unaware and unable to act as advocates for women Difficulty accessing /poor relationships with professionals, meant women frequently relied on advice of family, friends or work colleagues e.g. in early labour

18 Antenatal Classes Potential to address gaps in women s knowledge e.g. warning signs of complications or signs of problems in early labour Mixed views on the value of antenatal classes and of generic information It s just I had a wider network I could get information from, rather than going to an antenatal class and sitting there and one person telling me how fifty of us women are feeling. It was just easier the other way around. (GSH, Pakistani participant)

19 Participatory Work with Women Opportunity for women who have experienced an infant loss to suggest interventions to address barriers to maternal and child health Feedback of key findings to women who have been interviewed, for validation Project development groups to run over a three month period in Leeds and Bradford using participatory research methods to empower women to effect change Involvement of key stakeholders and professionals, supported by research team, to work with women on how interventions may be effectively translated into practice

20 Conclusions National and local infant mortality policy may not be impacting highest risk groups of women Professional relationships with women suggested as a focus for training and culture change Personal networks of support may lack resources Need for design and delivery of services to be more tailored to women s needs and perspectives This project provides an opportunity for service users to be involved in identifying problems and designing solutions to them

21 This work was supported by the Economic and Social Research Council [grant number RES ] Ghazala Mir and Katie Spicer can be contacted at: Leeds Institute of Health Sciences, University of Leeds, 101 Clarendon Road, Leeds LS2 9LJ Ghazala: , Katie: ,

Infant Mortality and Social Networks: Perspectives on Bereavement

Leeds Institute of Health Sciences Infant Mortality and Social Networks: Perspectives on Bereavement Dr Katie Spicer Dr Ghazala Mir NHS Airedale, Bradford and Leeds; Leeds Teaching Hospitals Trust; Bradford