Research methods

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4.4.1 Objective one

To identify the current evidence of risk factors contributing to perinatal mortality in Pakistani, Bangladeshi and WB women in Luton;

4.4.2 Method

A retrospective cohort design using routinely collected secondary quantitative data from the Luton and Dunstable University Hospital NHS Foundation Trust. Data was accessed from the Ciconia Maternity information System102 (CMiS).

4.4.3 Sample

Purposive sampling of women aged over 16 and all birth outcomes (i.e. stillbirth, perinatal mortality and low birth weight), who delivered 2008–13, residing in LU1–LU4, were included. The date range 2008–2013 was applied to represent the commencement of the latest National Institute for Clinical Excellence (NICE) guidelines on antenatal care (2008), in addition to policy level initiatives to reduce infant mortality in 2008 (i.e. Infant Mortality National Support Team).

4.4.4 Data collection

Ethical approval was provided by University of Bedfordshire Research Graduate School during the RS1 review process. NHS ethics were not required for this routinely collected data; however, an honorary contract was issued by the Luton and Dunstable University Hospital.

Accessing CMiS data

Scrutiny from the hospital’s Information Governance Manager ensured adherence to patient confidentiality and data protection legislation.

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CMiS is a computerised data management system produced by HD Clinical for maternity data, used by some maternity departments in UK. Clinical data is transposed from the paper medical records into CMiS by a midwife following delivery of the infant. Extracted data is in Microsoft Excel format. Typically each hospital has a CMiS ‘midwife champion’ who attends local meetings and training to optimally utilise the CMiS system.

144 Variables

Following the literature review (Chapter Two), the identified variables that were provided were: 1. maternal age (at booking in whole years)

2. marital status (single, married, divorced, cohabiting) 3. parity (1-10)

4. singleton or multiple

5. maternal height (cm) and weight (kg) 6. BMI (kg/m2)

7. ethnicity (Pakistani, Bangladeshi or WB) 8. gestational age at delivery (in weeks)

9. birth outcome (liveborn, dead, stillborn [antepartum and intrapartum], and neonatal mortality)

10. birthweight (kg) 11. delivery method

12. infant gender (male, female or indeterminate103) 13. Postcode at district level (LU1–LU4)

Challenges of data collection

There were some challenges experienced trying to obtain the CMiS data.

 There was no one within the Luton and Dunstable University Hospital NHS Foundation Trust who had the knowledge to undertake the extraction. The CMiS providers were contacted to establish if the extraction was physically possible, and advice was sought from the ‘Midwifery Research Jiscmail’ group. This resulted in identifying and meeting with an author who had published an article using CMiS data (and the research assistant who completed their extraction), who agreed to help with this study’s extraction.

 Several requested variables could not be supplied; maternal age and district level postcode104 (in conjunction with ethnicity) was considered potentially ‘identifiable’ and contravening data protection legislation. Instead, the Information Governance Manager

103 _{‘Indeterminate’ is used when foetus is too young to establish the infant sex.} 104

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approved the supply of maternal age ranges (i.e. 16–21, 22–25, 26–30, 31–35, 36–40, >41) so as not to compromise patient confidentiality.

 The midwife had difficulty transforming the raw age data into the age ranges. The researcher developed a method in SPSS and Microsoft Excel to transform the data and then produced step-by-step instructions for the midwife to follow, who agreed to re-extract the data and complete the transformation task (with telephone guidance from the researcher) – so that the hospital CMiS data remained confidential and separate from the research team105.

 At first, district level postcode data was provided (as requested). After initial analysis, it became apparent that this could not be mapped to electoral wards, and IMD data was available at whole postcode level. It was later agreed that a further data set106 would be supplied (i.e. sector level107 postcode).

4.4.5 Statistical analysis

Cross-tabulation using adjusted standard residuals (ASR) and Pearson Chi-Square was conducted to ascertain whether sampling distributions between sub-groups show independence. ASR is a useful and robust technique for categorical variables, especially when analysing groups with unequal sample sizes (Hinton, 2008; Field, 2013b).

The formula to calculate ASR is:

Adjusted residual = (observed – expected) / √[expected x (1 + row total proportion) x (1- column total proportion)].

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Satisfying the requirements of data protection, confidentiality and the Information Governance Manager.

106 _{CMiS data for 2014, for LU1–LU4, birth outcome and maternal ethnicity.} 107

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The numbers within the cross-tabulation tables of significance are shown as ‘1.96’ (rounded to 2.0); within the counts of the sub-group, the ASR count shows above statistical significance (p=0.05) of the sub-group (Field, 2013a). To use Pearson Chi-Square, it is necessary that cell counts be above 5, therefore when looking at some variables with cell counts <5, the variable was transformed to ensure adequate cell counts, ensuring validity of the Pearson Chi-Square test. Frequency counts were conducted to determine cell counts before performing cross-tabs. Where variables were collapsed to account for small frequencies within the analysis, this is stated (Chapter 9) (Rindskopf, 2004; Field, 2013a).

An Analysis of Covariance (ANCOVA)108 was used to determine if there was any significant difference between ethnic groups and to control for confounding variables (i.e. maternal age, smoking status, diabetes, gestation age at delivery, parity and maternal height and BMI), with birthweight as the outcome variable. Bonferroni posthoc analysis was used to determine where differences were, if present (Field, 2013b).

The Loglinear test of association was determined to be the most suitable test, to establish and model association and interactions between the variables, when applied in combination. Loglinear uses a using a multiway frequency table and has two approaches: general Loglinear and hierarchal model selection (Tabachnick and Fidell, 2014).The hierarchal model selection approach is most appropriate when the sequence of variable input or model is unknown and aims to identify the most parsimonious model (Tabachnick and Fidell, 2014). In the current study, there is no pre-identified model; consequently, the hierarchal model selection approach will be implemented. The equation for the hierarchal model is shown:

Ln(Fij) = µ + λi A + λj B + λk C + λij AB + λik AC + λjk BC + λijk ABC

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147 Validity and reliability

Using secondary data sets has a number of benefits for issues surrounding validity and reliability; a large sample size, spanning over 6 years increases the representativeness of the data. In turn, this minimises bias from minimising missing data (Sarensen, Sabroe and Olsen, 1996). Additionally, there is a degree of consistency in data collection, as a consequence of understanding the information required to be input into CMiS (i.e. the variables). However, there are also some limitations, which should be noted; data collection is beyond the control and rigour of the researcher, which may raise questions of validity (Sarensen, Sabroe and Olsen, 1996). Furthermore, the raw data may not be in an optimum format for research purposes (Boslaugh, 2007). This is discussed further in Chapter Eleven. Notwithstanding the limitations, the results from objective one are generalisable to similar populations (Richie and Lewis, 2003, Mays and Pope, 2000).

4.5 Objective two

To explore the similarities and differences in maternal health beliefs that influence health behaviours in perinatal mortality in Pakistani, Bangladeshi and WB women, through the maternity care pathway.

4.5.1 Method

Two methods were used; FG and SSI with 2 distinct samples (lay mothers and bereaved mothers). Lay mothers: FG discussions were conducted with lay mothers who have experienced a normal birth outcome. FG discussions would develop themes and concepts between the homogenous ‘female’ groups: i.e. ‘pregnancy’ ‘birth’ and ‘motherhood’. FG were stratified by ethnicity to provide a conducive space for the mothers to comfortably share their personal experiences, further allowing cross-comparison between ethnic groups (Kitzinger, 1994, 1995; Parahoo, 2006b;

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Krueger and Casey, 2009). The topic guide was developed and piloted using themes evidenced in the current literature (see Section 4.5.4) (Appendix 1).

Bereaved mothers: Face-to-face semi-structured interviews were carried out to provide a sensitive and confidential environment for bereaved mothers (Parahoo, 2006a). Methodological and ethical considerations for this research have been aligned with the ‘Framework for ethical decision making’ with research using bereaved families (see Sque et al., 2014, and Appendix 2). The topic guide was developed by reviewing the existing evidence and designed to meet the research objectives (see Section 4.5.4) (Appendix 3).

4.5.2 Sample

Lay mothers: purposive sampling was used to recruit lay women, aged over 16, living in Dallow, Saints, South, Biscot, Farley, Leagrave and Lewsey109,110, with a child aged under 24 months, singleton birth, ethnicity (Pakistani, Bangladeshi and WB). Exclusions include women who delivered a LBW infant (<2500g) or delivered preterm (<37 weeks), delivered multiples, or suffered an infant bereavement, gynaecological cancer and women who used assistive reproduction (Flenady et al., 2011). Optimum numbers for FG are 5–8 individuals (Kitzinger, 1995; Krueger and Casey, 2009). Originally it was planned to run only English speaking FG, however, following strong objection from a Pakistani community representative before commencement of the FG, it was determined necessary to include the voices of non-English speaking Pakistani/Bangladeshi women, therefore FG facilitated by Urdu/Bengali speaker(s) were included. Moreover, there is an established body of research that shows that non-English speaking migrant women experience

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A review of population by ethnicity density per ward was carried out to determine wards with higher ethnic populations.

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The above geographical wards were selected because they are the wards where the most infant deaths occurred in addition to being the most deprived and culturally diverse (Luton Borough Council, 2011; Child Death Overview Panel, 2013b).

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language difficulties, less information sharing, worse outcomes and report poorer satisfaction to their maternity care (Oliver and Nutbeam, 2003; Cantwell et al., 2011; Marmot, 2013; Psarros, 2014)

Bereaved mothers: Retrospective and purposive sampling of women identified a homogeneous group of women, who suffered a perinatal loss in the previous 6–24 months. Purposive sampling is necessary due to the specificity of the research question, resulting in a pre-determined and fixed sample strategy which is systematic and rigorous (Parahoo, 2006a; Teddlie and Yu, 2007; Bowling, 2009). The homogenous group was: ‘mothers’, ‘pregnancy’, ‘birth’, ‘loss’ and ‘motherhood’ all of whom have experienced an adverse birth outcome (defined as perinatal mortality or stillbirth), to provide insight into the similarities and differences of their maternal health beliefs, health behaviour and experience of adverse birth outcomes. Furthermore, purposive sampling will ensure that representation from the population of interest was achieved (i.e. Pakistani, Bangladeshi and WB women) (Lakhanpaul, Bird, Culley, et al., 2014).

There is an established body of research that shows that migrant women experience worse outcomes and report poorer satisfaction to their levels of maternity care (Oliver and Nutbeam, 2003; Cantwell et al., 2011; Marmot, 2013; Psarros, 2014). The evidence base suggests that BAME groups that have limited English language proficiency111 have worse knowledge of health care services which leads to delays in help seeking and when they do reach services they report receiving inadequate information from healthcare staff, resulting in less informed decision making (Dormandy et al., 2010; Schachter, Kimbro and Gorman, 2012;; Small, et al., 2014). Language is frequently cited as a barrier to accessing services (Atkinson et al., 2001; Cross-Sudworth, Williams

111_{Language ‘proficiency’ in this instance refers to an accurate comprehension of the oral message(s) in}

English in contrast to English ‘fluency’, whereby comprehension may be imprecise and lead to subtle but important misunderstandings in the message conveyed (Johnson et al., 2006; Schachter, Kimbro and Gorman, 2012).

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and Herron-Marx, 2011; Redshaw and Heikkilä, 2011; Hollowell et al., 2012) and receiving equitable levels of service (Szczepura, 2005; Mumtaz, O’Brien and Higginbottom, 2014). Moreover, migrant mothers are more likely to present to maternity services later resulting in fewer services being offered (such as early screening and risk detection) (Rowe et al., 2008; Draycott, Lewis and Stephens, 2011; Cresswell et al., 2013). Results from the Confidential Enquiry into maternal and child deaths has also shown that migrant mothers are at increased risk of adversity compared to the host country’s mothers (Draycott, Lewis and Stephens, 2011; Lewis, 2012).

Consequently, including the perspectives of non-English speaking mothers who accessed maternity services and who have suffered a perinatal bereavement will contribute to the real understanding of the similarities and differences of maternity health beliefs and maternity health behaviours in non-English speaking mothers. Moreover, including women with limited English language proficiency will also capture women who have recently migrated to the UK for marriage112. Pakistani or Bangladeshi women who have settled in Luton for many years may have a low level of English proficiency, but a sound understanding of how local maternity services work, conversely recent migrants may be well educated but have a limited understanding of how local maternity services work (Schachter, Kimbro and Gorman, 2012). Therefore, the proposed sample frame aimed to capture the various perspectives of Pakistani and Bangladeshi women who accessed local maternity services, irrespective of their English language proficiency.

Mothers who suffered a perinatal loss retrospectively, of 6–24 months, were invited. A retrospective time frame, where bereaved mothers suffered their loss 6–24 months previously has been selected, following personal communication with a national infant bereavement charity (i.e. Stillbirth and Neonatal Death Charity [SANDS]) and to mirror previous timescales of studies

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Although there is evidence showing that migration to marry UK citizens has declined, the large Pakistani and Bangladeshi community in Luton suggests that there may be some presentation of newly arrived women (Dale and Ahmed, 2011; Home Office, 2015).

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including bereaved parents, therefore, being considered appropriate and sensitive, minimising undue distress but allowing accurate recall of their experience (Richies and Dawson, 1996; Stroebe, Stroebe and Schut, 2003; Dyregrov, 2004; Hynson et al., 2006; Sque, Walker and Long- Sutehall, 2014).

Eligibility criteria

The inclusion criteria was: Pakistani, Bangladeshi and WB childbearing women, aged over 16 years (at the time of delivery) and residing in the LU1–LU4 postcode areas of Luton (which includes the wards of Dallow, Saints and Biscot which account for 33 percent of Luton’s infant deaths and are the most deprived wards in the town), who have experienced a perinatal death with a singleton infant in the last 6–24 months. Non-English speakers were included in this sample. The reason for this is to ensure that the voices and experiences of all mothers regardless of English language proficiency were captured.

Exclusions included non-childbearing women aged under 16 (at the time of delivery) or post- menopausal women, not living in LU1–LU4, who had not experienced a perinatal death in the last 6–24 months, whose ethnicity was not Pakistani, Bangladeshi or WB. Further exclusions included multiple pregnancies, conception via assistive reproductive technology and women diagnosed with gynaecological cancer (Flenady et al., 2011). The reasons for the exclusions are to ensure that these known factors that increase the risk of adverse outcomes were removed from the sample frame, reducing heterogeneity and confounds in the sample (Shevell et al., 2005).

4.5.3 Recruitment

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Lay mothers who fit the eligibility criteria were recruited through local Children’s Centres113_, situated within the wards of interest in Luton. Invitation to participate utilised several methods, to maximise recruitment outcomes (Roe, Minkler and Barnwell, 1994; Atkinson and Flint, 2001; Flanagan and Hancock, 2010). Recruitment methods were: poster advert (available on request), snowball sampling and face-to-face verbal invitation. Figure 19 shows the locations of the Children’s Centres (in red) and their branch sites (in blue).

Figure 19: Map of located children’s centres in wards (Dallow, Saints, South, Biscot, Farley, Leagrave and Lewsey).

Bereaved mothers

Potential participants who fit the eligibility criteria were identified from the Luton and Dunstable University Hospital Pursuing Perfection records (i.e. stillbirths) and Neonatal Intensive Care death records by Mr Griffiths and lead neonatal-nurse who assessed their suitability for inclusion, to determine whether the participants were medically fit to take part and to consider known mental health problems and levels of English competency. The participant was sent a cover letter from the consultant, a letter from the researcher, a study information sheet and an opt in/out reply slip, (herein referred to as ‘the recruitment pack’) (Appendices 5–7) and was supplied with a postage paid return envelope (addressed to the researcher at the Institute for Health Research at the

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University of Bedfordshire114) thus, maintaining confidentiality for the mother. The recruitment letter approach has been used in research on bereavement and is regarded as the least intrusive recruitment strategy and one that empowers the participant to contact the researcher (Richies and Dawson, 1996). Before submission for ethical approval, the ‘recruitment pack’ was sent to The Child Bereavement Charity for their feedback. Further inclusions were ethnicity (i.e. Pakistani, Bangladeshi and WB).

Exclusions included women with a diagnosis of gynaecological cancer and women who used assistive reproduction technology, those who reside outside LU1–LU4, women who delivered multiples and mothers whose ethnicity is recorded as different to Pakistani, Bangladeshi or WB (Flenady et al., 2011).

Recruitment of ‘Hard to reach’ communities

The term ‘hard to reach115_{’ is frequently cited in with Pakistani or Bangladeshi communities in the} UK, and is typically used to explain under-representation of marginalised groups in research (Lakhanpaul, Bird, Manikam, et al., 2014). Moreover, it has been suggested that addressing the complex and costly health inequalities in ethnic minority groups means that these populations are ‘easy to ignore’ (Salway et al., 2016). However, by implementing recruitment strategies that are properly culturally sensitive to Pakistani and Bangladeshi communities, research including their valuable opinions is wholly achievable, without which, challenging inequalities in maternity care is protracted.

Key to the success of the recruitment of participants in this study is “trust”.

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Opt out replies (numerically coded) were collated and returned to the hospital so that, using the corresponding code, the target list was updated by hospital staff and no further contact will be made by the research team. This also maintains patient confidentiality.

115 _{Described by the Health and Safety Executive (2004) as ‘inaccessible to most traditional and}

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 Supervisory team: the supervisory team have established trusting relationships with the community in Luton which facilitated access to participants.

 Gate keepers: the director of studies (Dr Nasreen Ali) introduced the researcher to several gatekeepers by organising a ‘get-together’ to discuss the study and recruitment. The invitees supported the researcher with access the wider community, and helped the researcher snowball lay mothers for the focus groups discussions. Additionally, they made recommendations that this study should include the voices of non-English speaking mothers, whose experience was thought to be different to English speaking Pakistani or Bangladeshi mothers.

 Face-to-face: a face-to-face recruitment method to recruit the hard to reach community, with supplementary snowballing. This allowed rapport, trust and familiarity to be established and key influencers within the community to be identified. By networking with key influencers the researcher was able to determine specific sessions where larger numbers of the target sample attended, consequently enabling more efficient recruitment. While this method was slow, it was important building broader relationships in the community, and both the researcher’s name and research is now recognised within the community.

 Insider/outsider: it is recognised that there are few studies using a White researcher within this community (others being Alison Shaw and Nicola Ellis). However, the broader themes of being a woman, motherhood and pregnancy are a shared experience with the researcher and therefore the issues become insider.

 The topic area is highly emotive in addition to being on the policy agendas of local Public Health initiatives; consequently, it has received broad support from Children’s Centre staff, mothers and community members alike.

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The recruitment strategies for the English and non-English speakers varied and is described below in more detail.