This next section reviews the contribution of social support, living conditions and service providers on perinatal mortality.
Social support
Social support has been variously defined including ‘resources provided by other persons’ (Cohen and Syme, 1985; pg 4) and can include emotional support and practical and informational resources (Yali and Lobel, 2002) and can be from family, friends, community networks or public services (Shaw, Dorling and Smith, 2006, Reid and Herbert, 2014). Cohen and Syme (1985) argue that social support is dynamic and changes across the lifespan, in addition to fractured networks as a consequence of migration. Social support operates on a few levels individual and societial. On an individual level, the extent of recprocity is important, and it is likely that cultural convention ‘defines’ the principals of reciprocity (Stansfield, 2006). This suggests that the quality and quantity of social support between collectivist and individualistic cultures may vary, with demonstrable differences on health outcomes (Hofstede, 2003). Furthermore, religious networks (and religious beliefs) may also provide support but this is seldom discussed in the literature; the dominant theme is individual-level or societial-level support (Koenig and Al Shohaib, 2014).
Social networks (i.e. family and friends) are considered a resource (Unwin, 2014) and mediate birth outcomes through levels of social support (which may be perceived as either positive or negative) (Marmot and Wilkinson, 2003; Headley, 2004; Downe et al., 2009; Cross-Sudworth, Williams and Herron-Marx, 2011), information sharing (Mir and Tovey, 2003; Betancourt et al., 2005; Cross- Sudworth, Williams and Gardosi, 2015) and social exclusion (Bowes and Domokos, 1996; Atkin, Ali and Chu, 2009; Farooq, 2014).
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There is substanstial research supporting the value of social support64 in health outcomes, for example, social support has shown a buffering effect when migrant residents live in areas with others from the same ethnic group65 (Halpern and Nazroo, 1999). However, there are few studies that have attended specifically to social support in South Asian, Pakistani or Bangladehsi families during the maternity care pathway in England. Moreover, there is increasing interest in levels of social support in ethnic minority families, as a means to explain differences in disease outcomes (Stansfield, 2006).
Social support is considered important for the wellbeing of the mother and has been shown to mitigate against the stress of pregnancy (Feldman et al., 2000) in addition to decreasing complications (Glazier et al., 2004). One study identified that South Asian women had a greater chance of receiving social support that appeared to buffer emotional symptoms compared with White women (Traviss et al., 2013). No other studies were identified that considered the role of social support before perinatal mortlity – and only two studies assessed social support after the stillbirth (Surkan et al., 1999; Cacciatore, Schnebly and Froen, 2009), and these were not explicit to ethnicity.
Studies over the last two decades have shown trends in South Asian families moving into nuclear family structures and less intergenerational living practices (Katbamna et al., 2004). The literature has focused on support networks in South Asian communities being centred around kinship ties; consequently, this has led to stereotyped assumptions and inequitable levels of professional support, which exacerbates difference (Katbamna et al., 2004). Katbamna and colleagues (2004)
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Social support has been found to be positive, whereas social isolation has been found to be negative to health consequences (Stansfield, 2006).
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identified that while there is informal support by extended family for South Asian women, there is a paucity of formal support in health services. The challenges were attributed to language difficulties and poor knowledge of service provison (Katbamna et al., 2004). This however, shifts responsibility to South Asian women, rather than focusing on how services may adapt to meet the deficit of adequate support.
Living conditions
This section describes how evolving government policies have shaped maternity services in response to a growing body of research and global initiatives66, focusing on inequalities in perinatal mortality and then describes the maternity services structure in Luton. It then moves on to appraise the literature which discusses the service providers’ role in contributing to women’s experiences of maternity care, with a focus on Pakistani and Bangladeshi mothers in the UK.
Government response
The last few years has witnessed increased government attention on maternity services. A number of factors have contributed, including the Secretary of State for Health (2014) pledging to reduce the rate of stillbirths by one fifth before 2020, following the Morecombe Bay Investigation (2015), The Maternity Review (2016), Saving Babies Lives (2016) and key white papers67. Additionally, changes to legislation evidenced in the Health and Social Care Act (2012) address health inequalities, whereby government pledged to address inequality in access, service provision and quality of care (Health and Social Care Act 2012). Legal objectives have been set by government in ‘The Mandate’ to the NHS to reduce deaths in neonatal mortality and stillbirth (outcome framework, domain 1c68) (Department of Health, 2015b), therefore making the NHS accountable
66
United Nations Sustainable Development Goals (3 & 10).
67 ‘Healthy lives, Healthy people’ (Department of Health, 2010a) and ‘Our Health and Wellbeing Today’ (Department of Health, 2010b).
682015 NHS Outcomes framework, identified health priorities; domain 1 ‘preventing people from dying
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pre-
conception
antenatal
intrapartum
postnatal
for ensuring legal compliance to the outcome framework objectives. Moreover, in 2008 the Infant Mortality National Support Team (IMNST) was established, targeting disadvantaged localities aiming to reduce maternal and infant mortality and inequalities by sharing good practice through a collaborative and multidisciplinary team approach (Korkodilos et al., 2010), including CDOP who review child deaths and address safeguarding issues locally. Reducing and addressing inequalities in birth outcomes is therefore a key government priority, whereby there are now legal objectives and extensive policy documents outlining government targets and associated interventions.
The maternity care pathway
The ‘maternity care pathway’ is referred to in only a few documents (Royal College of Obstetrics and Gynaecologists, 2008; Healthcare for London, 2009; Centre for Workforce Intelligence, 2015). It has not been explicitly defined, and has been typically used for data collection purposes to identify women using maternity services, following a pre-identified pathway (e.g. complex social factors or multiple pregnancy) which corresponds to the reimbursement scale for the NHS provider (NHS Digital, 2017). In the ‘Maternity care pathways for London’ (2009) report, and RCOG (2008) ‘Standards for maternity care’ (2008) it infers the stages between pre-pregnancy, antenatal, intrapartum and postnatal period. For the purposes of this study, the maternity care pathway will refer to the time period from preconception to postnatal (up to 12 months). This is depicted in Figure 11.
84 Luton’s maternity services
There is a broad range of maternity services available to Luton’s population provided by the Luton and Dunstable University Hospital NHS Foundation Trust69, GP surgeries and Children’s centres70.
Preconception services
There are no specific NHS preconception services for women in Luton, unless they proactively access their GP or practice nurse for advice.
Antenatal services
The Luton and Dunstable University Hospital NHS Foundation Trust is a level 3 neonatal intensive care unit (NICU) provider, and as such takes complex case referrals from across the East of England. It offers a wide range of services, for example, teenage pregnancy unit, a choice of birthing venues such as facilities for home births, maternity led birthing unit, obstetrician led care for complex cases, antenatal screening services71, slimming clinics for expectant and new mothers, smoking cessation clinics and neonatal intensive care facilities. In 2015, the Luton and Dunstable University Hospital NHS Foundation Trust implemented the Growth Assessment Protocol (GAP), using personalised foetal growth assessment for improved identification of IUGR foetus (Clifford et al., 2013).
Luton has seven Children’s Centres, offering a wide range of services to resident families, aimed at families with children aged from pregnancy to five years of age. Two Children’s Centres have translation services available in Urdu (Meadow Way CC) and Sylheti (Beech Hill CC). Services relevant for pregnant or new mothers include: Bump2Babe Course (antenatal classes), yoga during pregnancy, parenting classes, fathers’ group, one-to-one help and support, and support for
69 commissioned by Luton’s Clinical Commissioning Group. 70
Funded by Luton Borough Council.
71 including the combined test for Down’s syndrome, thalassaemia, rubella, SCT, glucose tolerance testing
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perinatal mental health and domestic abuse. Qualifying72 mothers have access to healthy start vouchers and multivitamins, encouraging expectant or new mothers to exchange vouchers for milk, fresh fruit, vegetables and vitamins.
A further initiative in Luton is ‘Flying Start’, aiming to provide evidence-based early intervention and support to babies and children, from pregnancy to aged 5, born in the areas of highest deprivation. Despite Luton having a high number of South Asian settlers, and figures from CDOP demonstrative of inequalities in birth outcomes (Child Death Overview Panel, 2013b), Luton does not offer specific maternity interventions for BAME expectant mothers (Garcia et al., 2015).
Postnatal services
All the Children’s Centres offer breastfeeding support, however, one specific Children’s Centre (Dallow Ward) offers one-to-one breastfeeding support in the homes of South Asian mothers, to support continuation of breastfeeding practice. This is however, contradictory73 to the centres’ objectives, which promotes a group approach to breastfeeding advice clinics.
The next section considers how service providers (i.e. staff and services) influence the experience of pregnancy and childbirth and birth outcomes, both positively and negatively.
The provider role in the maternity experience
Research examining the role of health providers and their contribution to barriers and facilitators (Jordan, 2004; Downe et al., 2009; Degni et al., 2012; Lakhanpaul et al., 2014b) demonstrates that
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Pregnant and in receipt of state benefits (ESA, JS, IS) or child tax credit with an income of less than £16,000 per year or aged under 18.
73 The children’s centre manager reported that the group approach did not work for a number of reasons
including that South Asian mothers preferred to breastfeed in private, would be attending to other family needs as a matter of priority over attending clinic and as a consequence of South Asian women practicing the ‘40 day confinement’.
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staff and services have a poor understanding of diverse cultural needs of their populations resulting in measurable differences in the delivery of care (Henderson et al., 2013; Hollowell et al., 2011). Literature also highlights service providers being central in determining women’s maternity experiences (Henderson et al., 2013; vanRyn and Fu, 2003; Psarros, 2014). For example, attitudes and behaviours of healthcare service providers have been shown to be both a barrier and facilitator to ethnic minorities’ levels of satisfaction and engagement with services (Puthussery et al., 2010; El Ansari et al., 2009).
During the1990s interest in BAME women’s experiences served to highlight issues of racism (Woollett and Dosanjh-Matwala, 1990; Bowes and Domokos, 1996) and helped to increase cultural awareness (Cross-Sudworth, Williams and Herron-Marx, 2011). The main areas that were highlighted in this evidence are issues around effective communication (Rowe et al., 2001; Degni et al., 2012; Jomeen and Redshaw, 2013), not having appropriate information (Cross-Sudworth, 2007), feeling powerless and being invisible (Ellis, 2004), power imbalance between staff and mothers (Bowes and Domokos, 1996), and differing attitudes and perceptions to the standards of care received from midwives between ‘indigenous’ women and Pakistani mothers (Hirst and Hewison, 2002). The specific evidence of Pakistani and Bangladeshi women’s experiences of maternity care in England is especially sparse (Ali and Burchett, 2004; Dartnall, Ganguly and Batterham, 2005; Jayaweera, D’Souza and Garcia, 2005; Puthussery et al., 2008; Jomeen and Redshaw, 2013).
A recent review of the UK evidence identifying barriers and facilitators of timely engagement of maternity services by Hollowell and colleagues (2012) identified barriers faced by BAME women. These included women’s poor understanding of how to navigate NHS services, or confidence to seek the information that they require; some women were found to be unclear of the value of maternity care, believing that pregnancy is natural and consequently undervaluing the contribution
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of antenatal surveillance. Moreover, there was misunderstanding and erroneous beliefs regarding screening – that it might be harmful. Hollowell et al (2012) also revealed that women had the desire to attend services that are localised and/or had the lack of means to physically access maternity services outside of their local area. Additionally there was a perception that health staff were not sensitive or respectful – which is the consequence of patients feeling disempowered through mechanisms of limited language proficiency, power imbalance and communication issues. This is then reinforced by the lack of availability of trained interpreters and the over-reliance on family members, the desire for a female practitioner, or misunderstanding that the women can see female staff (Hollowell et al., 2012).
Dartnall and colleagues (2005) found that service providers were found to make assumptions of ‘hard to reach’ women’s levels of language ability and knowledge of pregnancy; the staff provided health information leaflets that few mothers actually read, preferring to listen to the advice from elders in the community. Similarly, Ali and Burchett (2004) found that their participants reported that staff appeared reluctant to help non-English speaking mothers understand the information provided, especially when medical terminology was used. Consequently, many mothers perceived that they had insufficient information to make informed choices in their pregnancy care or birth plans (Ali and Burchett, 2004). While both these studies might be considered somewhat old, what is notable is similar findings in a more recent study of BME women’s experiences in maternity services by Jomeen and Redshaw74 (2013): poor communication issues were salient in the negative experiences reported, women felt a burden or perceived that they were ignored by uncaring staff, they did not feel that they were listened to, and weren’t active in the decision making around their care. Furthermore, they reported perceptions of staff stereotyping their cultural needs and making assumptions regarding women’s understanding of health messages (Jomeen and Redshaw, 2013).
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It might be argued that some of the findings could apply to the experience of WB women since the studies mentioned above only include BAME. However, in 2013, Henderson and Colleagues published their findings that included 84.8 percent White, 2.5 percent Pakistani, 0.7 percent Bangladeshi, 2.4 percent Indian, 0.7 percent Caribbean and 2.7 percent African and Chinese living in England. Their results showed that most ethnic minority women reported a worse maternity experience compared with White mothers and concluded that little has changed since earlier studies (Henderson, Gao and Redshaw, 2013). Furthermore, it's hard to make direct comparisons between the sparse numbers of studies that do exist as the participants differ, due to methodological differences in the previous studies, for example the ethnic classification used or whether the study used qualitative (FG or interview) or quantitative (survey or secondary) data.
Cultural competence.
Many research and policy papers have called for ‘culturally competent services’ to help resolve some of the inequalities in care experienced by ethnic minority women (Ali and Burchett, 2004; Grewal, Bhagat and Balneaves, 2008; Degni et al., 2012; Garcia et al., 2015). Cultural competence aims to develop services that deliver high standards of equitable care irrespective of ethnicity, and is of growing importance in an increasingly diverse population (Betancourt et al., 2003; Mir, 2008). Betencorte (2003) argues that a poor understanding of cultural needs results in sterotyped behaviour by staff, and includes less information sharing (Betancourt et al., 2003; Ellis, 2004). Furthermore, understanding differences in symptom expression, presentation and illness perceptions is an important contribution. Furthermore, bi-directional language barriers may also contribute to patient dissatisfaction, poor adherence and reduced outcomes (Betancourt et al., 2003).
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A closer examinaton of the literature on cultural competence however, fails to provide a clear idea as to what precisely staff might need to do to provide such a service. For example, there is no universally accepted definition (Horvat et al., 2014), consequently, mainstream services ‘essentialise’ diversity (Witz, 1995) and focused services risk exacerbating difference and inequalities further by inadvertent streotyping (Cattaccin, Antonio and Domenig, 2013). Furthermore, a recent study by Phillimore (2016), contary to previous studies (Rowe and Garcia, 2005; Rowe, et al., 2008; Tucker et al., 2010; Gardosi, Madurasinghe, et al., 2013; Redshaw and Henderson, 2014), identified that migrant women did not attend their antenatal care late, and engaged fully with maternity services and the degrees of service engagement were in fact influenced by institutional, legal and structural barriers. This indicates that understanding the contribution of institutional, structural and legal factors needs to be considered, in addition to diverse cultural factors at an individual level, in the development of culturally competent maternity services (Mir, 2008; Mir and Tovey, 2002; 2003).