Understanding delayed access to antenatal care: a qualitative study Rosalind Haddrill
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| 1.1.3.2 Fetal/neonatal wellbeing
Lewis, in the 2004 CEMD report, suggested that children born to women from more vulnerable groups experience a higher risk of death or morbidity, with women facing problems with pre-term labour, intrauterine growth restriction, low birth weight and higher levels of neonatal complications. US Government figures from the 1980s and 90s suggested that for every dollar spent on antenatal care more than three would be saved in the first year of a baby’s life, in terms of reducing such growth restriction and infant mortality (Johnson et al 1994). Lavender et al’s (2007) systematic review of quantitative studies comparing early, late and no antenatal access found one study suggesting a link between late booking and increased perinatal morbidity (Petrou et al 2003), and others suggesting women who were unbooked to be at greater risk of perinatal morbidity and possibly mortality as well. However the findings were limited by a lack of prospective studies and UK evidence. In one large cohort study based on 12 years of Finnish hospital register data, chorio-amnionitis or placental abruptions were more common complications of pregnancies of women ‘avoiding’ antenatal care (the authors’ language), and pregnancy outcome was impaired, even when adverse pregnancy outcomes were controlled for confounding factors (Raatikainen et al 2007). There were significantly more low birth weight infants in under- and non-attenders, more fetal deaths and more neonatal deaths. The authors conclude that even when birth takes place in hospital, non- or under-attendance at antenatal care carries a substantially elevated risk of severe adverse pregnancy outcome. A recent Belgian study, analysing the relation between specific elements of antenatal care and the risk of preterm birth (in comparison to consideration of the number of visits only) found a significant association between the content and timing of care and preterm birth, including initiation of antenatal care after 14 weeks gestation (Beeckman et al 2012). Noonan et al’s (2013) review of data from a national (US) urban birth cohort study argues that whilst the evidence that early or adequate antenatal care has favorable effects on birth outcomes is limited, it is possible that it confers health benefits to the child that do not become apparent until after the perinatal period. They suggest that ‘routine health care encounters during the prenatal period could potentially be used more effectively to enhance children’s health trajectories’ (p189). 1.1.4 How many women are accessing antenatal care late? Despite recommendations for early access, many women do not present early for antenatal booking. Studies have found hugely varying proportions of late booking women, but with varying definitions of late, most commonly between 18 and 22 weeks gestation. However the figures are further complicated by differing definitions of booking itself. Recently published NHS data showed a figure of 86.8% of women being ‘seen and assessed by a healthcare professional within 12 weeks and 6 days of their maternity’, missing the 90% minimum target (DoH 2013). The 2007 Department of Health paper Maternity Matters: choice, access and continuity of care in a safe service quotes the percentage of women having their first hospital appointment after 20 weeks gestation for 2004-5 as around 16%, citing Hospital Episode Statistics (HES) (DoH 2007). A more recent publication from the Health and Social Care Information Centre presented HES data for 2011-12, which showed 13.5% of women being more than 19 weeks gestation at their ‘first antenatal assessment date’ (presumably their first hospital appointment). However with more than 27% being of unknown gestation at their first appointment, because it was not recorded (the author comments on the poor quality of data submitted by some NHS trusts), the figure could be considerably higher (HSCIC 2012). As hospital attendance statistics don’t take into consideration women who have already received antenatal care elsewhere, accurate figures are difficult to ascertain in this way. Rowe et al’s (2008) cross-sectional study, using a postal survey of 839 antenatal women from 15 English hospitals, found the figure to be 2.5% booking after 18 weeks. Though the study was inevitably subject to response bias, the figure was significantly higher amongst certain ethnic and social groups. Similarly, though on a larger scale, the NPEU’s survey, Delivered with Care: a National Survey of Women’s Experience of Maternity Care 2010, was based on a postal survey of 10,000 randomly selected postnatal women (from birth registration data) aged over 16 years. It found that 2.8% of the 5333 respondents had not booked with NHS maternity services by 19 weeks, though there was significant regional variation (the figure was 6% in London) and that again certain social and ethnic groups were more likely to access care later (Redshaw and Heikkila 2010). This figure had fallen to 1.7% in the 2015 NPEU survey, though the response rate had also fallen overall to 47% (4571 women) (Redshaw and Henderson 2015). Kupek et als (2002) analysis of the pregnancy records of 17,765 women from nine maternity units in Northern England and North Wales found 7% of women initiated care after 18 weeks. This contrasts with statistics from one London hospital which found that 31% of women in one financial year (2007-8) booked for antenatal care after 18 weeks gestation (Baker and Rajasingam 2012). An audit of 6 other London hospitals found between 8.2% and 22.5% of pregnant women booking after 22 weeks, though the author acknowledged that women transferring in after an initial booking elsewhere in the country were included in these numbers (Gaudion 2008). Statistics from the Jessop Wing in Sheffield showed that 6% of pregnant women booked after 19 weeks gestation in 2009-2010, though this figure was higher (8.7%) amongst women aged less than 20 years (NHS Sheffield 2010). 1.1.5 Who are the late booking women? Table 1.1.5 summarises maternal characteristics associated with the late initiation of or reduced attendance for antenatal care, in UK and Northern European studies. Rowe and Garcia’s 2003 systematic review of social class, ethnicity and attendance for antenatal care in the United Kingdom, confirms that evidence from outside the UK (Europe, USA and Australia) suggests that socio-economic factors - young age, ethnicity, low income, low education, unmarried status and high parity - are associated with late initiation of antenatal care and/or fewer antenatal visits. Other studies have confirmed this link to deprivation, marginalisation and low autonomy (Downe et al 2009). Rowe and Garcia comment that it is not clear how generalisable these are to the UK context however (p114). Their review of nine UK studies (selected from 1300 identified papers) assessing attendance for antenatal care according to social class, deprivation or ethnicity found that most studies were old and were of poor quality, involving small numbers, differing definitions of late booking and not taking into account confounding factors such as age and parity. They did suggest that women from manual classes were more likely to book late and/or make fewer visits, especially Table 1.1.5: Chronological summary of UK and European studies of maternal characteristics associated with later initiation of or reduced attendance for antenatal care
if their partners were unemployed, and that Asian women were more likely to book late than white British women. They concluded that little good quality evidence existed on social and ethnic inequalities in antenatal attendance in the UK. A further systematic review of social and ethnic differences in the uptake of antenatal screening (Rowe, Garcia and Davidson 2004) found equally poor quality papers but some suggesting women of South Asian origin were less likely to receive certain screening tests, and two studies linking late booking to lack of screening. This is significant as screening forms such an important part of antenatal booking. In Kupek et al’s (2002) study in Northern England and North Wales, maternal characteristics associated with late initiation were low maternal age, smoking and ethnicity, with Black and Minority Ethnic (BME) women, particularly Pakistani, up to five times more likely to initiate antenatal care after 18 weeks than white women. In Rowe et al’s cross-sectional postal study (2008), black women were six times more likely to book late (9.6% as opposed to 1.6% of white respondents), though the authors admitted the numbers were small (four women); as were those women with no partner. Socioeconomic status was not significantly associated with late attendance, though women who had never worked or whose employment status was not classified were more likely to attend late. Compared to national data, there were fewer responders born outside the UK in this study, even though interpretation services were available for women to complete the survey. The authors suggested that the non-responders were more likely to be BME women and therefore more likely to attend late, so the 2.5% they found was likely to be an underestimate of the true proportion of women initiating and booking late for antenatal care. Other UK surveys have had similar findings. A recent study at a large East London hospital found multiple predictors for late initiation of antenatal care, including non-British (white) ethnicity, poor English language skills and non-UK birthplace, African/Caribbean ethnicity, age less than 20 years and living in temporary accommodation (Cresswell et al 2013). The 2007 national Healthcare Commission funded survey of maternity services, with 26,325 respondents, found that BME women (including non-British white ethnicity), single women and women completing education at 16 years or earlier were more like to access antenatal care after the recommended 12 weeks gestation (Raleigh et al 2010). In the 2010 NPEU study Black women, both born in the UK and not, young women, those with lower educational achievement and those living in the most deprived areas (based on the Index of Multiple Deprivation) were significantly more likely to first see a health professional later in their pregnancies (Redshaw and Heikkila 2010). Secondary analysis of the data from this study found that after adjusting for age, ethnicity and parity, when compared to women living in the highest Index of Multiple Deprivation (IMD) quintile, women living in the lowest quintile were:
Studies from Northern European countries, comparable to the UK in terms of their universal accessibility and encouragement of antenatal care, have also had similar findings. Raatikainen et al’s (2007) Finnish study found that under or non-attendance was associated with social and health behavioural risk factors including unmarried status, lower educational level, young maternal age, smoking and alcohol use. A large Dutch cohort study found all ethnic minority groups starting antenatal care significantly later. Poor language proficiency and education, and higher teenage pregnancy rates were major factors, however where no language barrier existed cultural factors (even after several generations) and attitude to pregnancy played a role in delaying access (Alderliesten et al 2007). Attitudinal factors in relation to access to healthcare generally are well documented, with a suggestion that some lower socio-economic, ethnic or cultural groups may see health as being further from their control than others do, and are subsequently less able to make healthy choices (DoH 2004c). The influence of personal barriers such as attitude towards pregnancy, personal beliefs and lifestyle on the access to antenatal care is identified by studies, though mainly from the USA and most are 10-20 years old. These note a significant link between unplanned and particularly unwanted pregnancy, indifference to the pregnancy and delayed or non-attendance for antenatal care (Mayer 1997, McComb Hulsey 2001). Some studies however suggest that ‘planned ‘unplanned’ ‘mistimed’ etc. are not terms that women use when viewing their pregnancies, and there is debate about women’s acceptance of the concept of pregnancy ‘planning’ and the limitations of using such terms (Barrett and Wellings 2002). It has been estimated that as many as 50% of pregnancies in the UK are unplanned or mistimed (CMACE 2011). Unplanned pregnancy has been linked to lower socio-economic and educational status, young age and black ethnicity, also to negative health behaviours and attitudes. Links to poorer birth outcomes have also been identified (Barrett and Wellings 2002). Keeton and Hayward’s (2007) US cross-sectional study of pregnancy intention, using data from 48,000 births, cites ethnicity and particularly age as the most important factors influencing outcomes, though the authors agree that unwanted pregnancies are a reason for non-attendance antenatally, as well as poor socio-demographic and economic conditions. 1.2 UK public health guidance in relation to health inequality and access to antenatal care Guidance on early access to antenatal care reflects the public health agenda and the focus of successive British governments to try to identify and tackle health inequalities and improve access to all healthcare. The publications are summarised in table 1.2. As the 2010 white paper Equity and excellence- Liberating the NHS (HM Government 2010) states: “Pregnancy offers a unique opportunity to engage women from all sections of society, with the right support through pregnancy and at the start of life being vital for improving life chances and tackling cycles of disadvantage” (p17). Policies reflect the influence of Tudor Hart’s ‘Inverse Care Law’ (Hart 1971, Appleby and Deeming 2001) and the findings of landmark health reports such as the 1980 Report of the Working Group on Inequalities in Health (Black report) (Department of Health and Social Security (DHSS) 1980) and the 1998 Independent Inquiry into Inequalities in Health (Acheson Report) (DoH 1998). The Acheson report in particular Table 1.2: Chronological summary of significant publications relevant to access to maternity care in England
identified the need to break the ‘intergenerational cycle’ of health inequalities and to prioritise the health of families, and particularly pregnant women. The recent review on health inequalities, Fair society, Healthy Lives, recommended “giving priority to pre- and post-natal interventions that reduce adverse outcomes of pregnancy and infancy” (p22) as part of its highest priority recommendation: to give every child the best start in life (Marmot et al 2010). The 1993 report Changing Childbirth defined one of its three principles of good maternity care as “Maternity services must be readily and easily accessible to all. They should be sensitive to the needs of the local population and based primarily in the community” (DoH 1993: 18). Ten years later the House of Commons Health Committee’s report into inequalities in access to maternity services acknowledged unequal access was still a significant issue, and recommended further research to establish the reason for the inequalities and poor access to antenatal care (HM Government 2004). The National Service Framework (NSF) for Children, Young People and Maternity Services (supported by Every Child Matters: change for children in health services – both DoH 2004) set out a ten-year programme for sustained improvement in children’s health and well-being, setting standards for the care of children, young people and maternity services. It reiterated the ideals of Changing Childbirth, promoting “an individualised, flexible, woman-focused approach to care and support” (p8) and emphasis on designing a service to meet needs of all, especially vulnerable and disadvantaged women such as refugees and asylum seekers, homeless women, substance misusing women, teenagers, and women experiencing domestic abuse. It acknowledged that some women, usually the most vulnerable, still miss out on services for pregnant women because they lack awareness of such services, and suggested that the disparity in uptake resulted in disproportionately poorer outcomes for women and babies. One of the NSF standards stated that women should “have easy access to supportive, high quality maternity services, designed around their individual needs and those of their babies” (p4), and one of its ‘Markers of Good Practice’ stated that maternity services should be proactive at engaging all women, particularly those from disadvantaged groups and communities, early in their pregnancy and maintaining contact before and after birth. It identified that these women were significantly less likely to access services early or maintain contact throughout their pregnancies, factors which may affect the outcomes for their own and their babies’ health in the short and longer term. NHS maternity care providers and Primary Care Trusts (PCTs) (now replaced by Clinical Commissioning Groups (CCGs)) were required to plan their provision based on up-to-date assessments of the needs of the local population and involve local service users. They were also required to address the reasons why certain women find it difficult to access and maintain contact with maternity services, by designing services to overcome these barriers to care. This included ‘community-based continuity of care schemes’ for the most vulnerable, and targeted health promotion and education materials for pregnancy, encouraging early access to antenatal care. A subsequent white paper Our Health, Our Care, Our Say: a new direction for community services (DoH 2006) set out the future for health and social care services. It proposed a more flexible, personal service, tailored to the specific health or social care needs of individuals. Following on from this Public Service Agreements (PSAs) were drawn up, with targets that set out the key public service improvements proposed by the government. The Department of Health established an infant mortality PSA target, one element of the Health Inequalities PSA Target, to reduce inequalities in health outcomes as measured by infant mortality and life expectancy at birth (DoH 2007a). A review of the target was established to consider why, despite a general improvement in infant mortality rates, significant health inequalities in infant mortality between different social groups remain. Recommendations included promoting the joined-up delivery of services, a strong focus on helping families to access services and the importance of early antenatal care, though it acknowledged the limitations of the evidence to support this: “there are interventions that… are likely to have an impact even without all the evidence, e.g. early booking and effective use of high-quality healthcare” (DoH 2007a:7). “Early booking by 10–12 weeks gestation allows for antenatal diagnosis and planned management. Ensuring that women in the R&M group and black and ethnic minority groups book early and are able to access antenatal screening tests may help reduce infant mortality health inequalities” (ibid: 31) PSA19: Ensure Better Care for All (HM Government 2007) also had a key indicator relating to maternity services, and the specific target of increasing early booking and the monitoring of access to maternity care formed part of this indicator: “maternity service providers need to ensure that services are accessible to all women, including the vulnerable and excluded, so that a risk assessment can be completed, women can make informed choices about their care, and appropriate care and services are put in place to help improve life chances for children” (HM Government 2007: 4). The aim was that this would lead to the more flexible, responsive and accessible maternity services envisaged in the NSF. Again, it was proposed that ‘new and different types of care’ were designed to meet the needs of all women and their families who need additional support, such as outreach services for those who traditionally do not access maternity care early in their pregnancy, so that all pregnant women could benefit from early care: “women who are able to access maternity services for a full health and social care assessment of need, risk and choices by the 12th completed week of their pregnancy will have the full benefit of personalised maternity care and improved outcomes and experience for mother and baby” (HM Government 2007: 5). A specific target for increasing early access was introduced in 2008, with PCTs required achieve more than 90% of women booking by 12+6 weeks by 2010-11 (NHSIC 2008). As previously mentioned, this has not always been achieved. Although the PSAs have been abolished, this data is still collected as part of government transparency requirements. The influential DoH maternity white paper Maternity Matters: choice, access and continuity of care in a safe service, also published in 2007, also highlighted the need for “high quality, safe and accessible services that are both women-focused and family-centred” (p5) and the unacceptable outcomes for some women, especially the vulnerable and disadvantaged, with increased maternal and infant mortality. It described a “comprehensive programme for improving choice, access and continuity of care” (p7) to be used by commissioners and providers of healthcare, as part of the government’s health reform agenda (DoH 2007c). Once again ‘improved access to services’ was cited as a key aim, and the need to understand what prevents some women from seeking care early in their pregnancies or maintaining contact with maternity services. Similarly, numerous NHS Operating Framework reports, most recently for 2010-2011, have identified early booking as an NHS priority (DoH 2009). Though Maternity Matters is no longer government policy, the 2010 White Paper ‘Equity and excellence- Liberating the NHS’ has continued the focus on extending maternity choice and engaging women during pregnancy (HM Government 2010). Recent guidance for the new CCGs on commissioning maternity services has reiterated the importance of early booking for pregnant women: “Her midwife will help her develop a personalised plan of care for pregnancy including undertaking a full medical and social risk assessment before the end of the 12th week of pregnancy. (NHS Commissioning Board 2012: 20)” 1.3 The need to examine women’s perceptions and beliefs towards late booking The statistics and demographic information around late booking only tell part of the story. Feijen-de Jong et al’s (2011) systematic review of late and/or inadequate use of antenatal care identifies that many retrospective studies identify factors which are associated with late or poor antenatal care usage, but not the mechanisms associated with such usage. They suggest that further research, quantitative and qualitative, is needed to ‘disentangle’ such mechanisms. As Downe et al (2009), in their meta-synthesis of barriers to antenatal care for marginalised women in high-income countries, acknowledge: “Knowing that certain factors appear to influence outcomes does not tell us about the mechanisms and contexts in which these factors flourish. Interventions to address these factors cannot be devised unless the underlying mechanisms and contexts are understood and addressed” (p519). This suggests the need for a detailed exploration of women’s perceptions of antenatal care. Novick’s (2009) review of women’s experiences of antenatal care agrees, suggesting that despite decades of recommendations for women-centred approaches to antenatal care, women’s experiences are still relatively unexplored. Oakley’s historical perspective on antenatal care (1982) identifies that concerns about antenatal non-attendance were raised even before widespread antenatal care was available in the UK in the late 1920s. She highlights women’s dissatisfaction with antenatal services as one of the strongest reasons why providers have been unable to reach all their potential clients. Garcia (1982), in the same publication, also notes that the need to gain women’s views about access to antenatal care has long been recognised. In 1949 the Royal Commission on Population, considering antenatal non-attendance, recommended that “in the development of the maternity service… there is a special need for a close study of the woman’s point of view” (RCP 1949 cited in Garcia 1982: 82). Commenting on their delayed or reduced access to antenatal care, the authors of previous CEMD reports have questioned whether women died because they were unaware of the need for care, or unaware of the warning signs of problems in pregnancy, or because the services did not exist, or were inaccessible for other reasons such as distance, cost or sociocultural barriers (Knight et al 2014, Lewis 2004). Their recommendations have included that “The views of women who book late or fail to attend should be sought in helping to provide more appropriate services in future. The views of all women who use the services should also be sought on a regular basis” (CEMD 2001, executive summary: 7-8). The Government response to the House of Commons Health Committee’s Inequalities in Access to Maternity Services report in 2004 also recommends further research: “If maternity services are to meet the needs of disadvantaged women, babies and families, the evidence base on which policy decisions and service developments are made must be expanded. We recommend that the Department commission programmes of quantitative and qualitative research so that an accurate assessment of the extent to which women who do not gain full access to maternity care can be made, the reasons for inequalities and inequities established and further action taken to address these inequalities” (HM Government 2004: 10,51). A systematic review of access to antenatal care, by Lavender et al (2007), concludes that there is a general lack of both quantitative and qualitative research, particularly based in the UK, which addresses the phenomenon of late antenatal attendance or non-attendance. They argue that large scale audits are likely to produce superficial results, and suggest ‘pursuing work with known disadvantaged groups’ (p6) may be most effective, enabling a ‘layered approach’ to the complexities of the topic. Rowe and Garcia (2003), commenting on the poor quality evidence for late access to antenatal care, recommend the depth and detail of qualitative research: “Qualitative research is also needed to provide a better understanding of why some women book late for antenatal care or do not attend antenatal appointments” (p118). They advocate that non-attendance should be explored from a woman’s viewpoint as well as a professional/service perspective. This final point is significant in that it suggests both women and practitioners have a contribution to make to the understanding of late booking. 1.3.1 My personal perspective as a midwife As a midwife I come from a profession which integrates biomedical, psychological and social perspectives in order to provide holistic care for women and their babies. I have a strong belief in the value of antenatal care. I want women to come for care early and regularly during their pregnancies because, like other midwives, I see it making a positive contribution. Though I acknowledge its limitations, I believe it makes a difference to women’s physical health and psychological wellbeing, to their experience of pregnancy and their preparation for parenthood, whether women are expecting their first or subsequent babies. I consider that some women, often women with difficult life circumstances, don’t prioritise their antenatal care because they don’t recognise its value, and that this lack of understanding may be the primary cause of late booking. My clinical experience leads me to acknowledge that there is an expectation that women will attend for care, but also that women are rarely asked for their opinions about the timing and content of the antenatal care they are offered. A drive to understand better women’s perceptions of antenatal care, and ultimately to improve access, underpins this research. 1.4 Conclusions Antenatal care in the UK is a well-established and widely accepted programme of health screening, health education and social support, with national policies and clinical guidance encouraging early and regular attendance. It represents a significant element of contemporary midwifery practice, with antenatal booking the start of the midwife-woman relationship. The full impact of inadequate care during pregnancy, particularly late booking, is unclear, and complicated by many factors. Connections to health inequalities, in particular maternal, fetal and neonatal morbidity and mortality (especially amongst certain social and ethnic groups), have been made. Estimations of the number of women booking late vary widely, but suggest that a small but significant number of pregnant women do not attend early, many with risk factors for poor pregnancy outcomes. There is limited evidence to support the complex set of interventions that is modern antenatal care. However, women who book early are more likely to receive appropriate care and achieve better health, emotional and psychological outcomes (RCM 2012). Many authors have identified the value of examining the attitudes and beliefs of late booking women, in an attempt to improve understanding, access to care and, ultimately, health outcomes. Gaudion and Homeyard's (2010) work with women of economic disadvantage in London considers that for professionals to develop true partnerships with such women, listening to their voices, however uncomfortable, “provides the insight and learning to improve” (p145). This has led to the development of a study to ‘listen to the voices’ of a group of late booking women, with the aim being to gain a deeper understanding of the reasons why some women present late for antenatal care. As part of this, chapter two will examine and synthesise the existing evidence in relation to perceptions and beliefs concerning the late initiation of antenatal care. Chapter 2: A literature review and critical interpretive synthesis of perceptions and beliefs towards late booking for antenatal care 2.1 Introduction The synthesis of research has been described as a process resulting in a ‘whole’ greater than the sum of its parts, pushing beyond the original data (in this case the literature on late booking) “to a fresh interpretation of the phenomena” (Barnett-Page and Thomas 2009: 15). It encompasses many approaches. Downe et al (2009) and others comment that there is a lack of UK-based qualitative research on access to antenatal care, and particularly delayed initiation (late booking). Preliminary literature searches confirmed this, but identified a small number of non-UK qualitative studies and a much larger number of quantitative and mixed method studies examining access to antenatal care, many including late booking as a focus. I decided therefore to search for a method of systematic review/synthesis that could summarise and integrate this diverse body of evidence. The synthesis of qualitative healthcare research, most commonly using the principles of meta-ethnography (Noblit and Hare 1988), is recognised as a mechanism for producing theories with greater explanatory power than could be achieved in a narrative literature review (Seers 2012, Campbell et al 2003, 2011, Britten et al 2002). Synthesising qualitative research helps to ensure that patient/carer views and perspectives are incorporated into health service policy making and delivery. It can add new insight and value, and can identify common themes and any divergent views, as Ring, Jepson and Ritchie (2011) comment: “the strength of qualitative research is its ability to provide personal insight into the phenomenon being investigated but its perceived limitation has been the small number of participants and the inability to generalise findings. Being able to synthesise individual studies to produce a ‘stronger’ body of knowledge has, therefore, become of critical importance if the full potential of qualitative research to inform practice and policy is to be realised.” (p388). Meta-ethnographic techniques have been used solely with qualitative studies and small samples. A further challenge however is the comparison of a much larger and more diverse body of evidence, from a variety of sources, in a form that is useful in informing policy and that is empirically and theoretically grounded (Dixon-Woods and Fitpatrick 2001). Mays, Pope and Popay (2005) comment that the complexity which surrounds clinical decision-making requires the synthesis of many different types of evidence. Critical Interpretive Synthesis (CIS) is a relatively new method, developed in response to this challenge, by Dixon-Woods et al (2005/2006a,b), and originally used to synthesise evidence relating to access to healthcare by vulnerable groups. Its authors suggest the application and evaluation of CIS for use in challenging areas of health care. Responding to demands from policy-makers/managers for syntheses that are useful, rigorous and relevant, they argue that it should be possible (and is desirable) to include all forms of evidence in a synthesis. CIS has evolved from an attempt to use meta-ethnography and techniques from Grounded Theory to bring together findings from a large and methodologically diverse group of studies, moving beyond the limitations of interpretive syntheses confined to qualitative research (Barnett-Page and Thomas 2009, Campbell et al 2011, Heaton, Corden and Parker 2012). Flemming (2010) suggests it is the logical extension of qualitative syntheses. Both systematic and iterative in its approach, CIS is particularly useful for critical scrutiny of complex bodies of literature with the aim of generating new concepts, as well as recommendations for practice (Kazimierczak et al 2013). Heaton, Corden and Parker (2012) suggest that CIS’s unique approach has distinct advantages, including the rejection of a ‘stage’ approach to review work and the promotion of a more flexible, iterative, dynamic and reflexive approach to synthesis. It enables researchers to engage critically with the assumptions underlying research, which help to shape and inform the results of studies, and “can provide valuable additional knowledge, help to take stock of the current state of understanding and identify future research priorities and strategies” (p8). It has the capacity to move beyond the aggregative understanding of conventional systematic review techniques and contribute to a more inclusive view of a topic (Talseth and Gilje 2011, Dixon-Woods et al 2006b). It is an approach to the whole process of review, which is sensitised to the process of conventional systematic review methodology (summarising and theory testing), but draws on a distinctive tradition of qualitative enquiry and methods for interpretive synthesis (more theory generation): Noblit and Hare’s (1988) ‘integration’. Theory in this context can be defined as an insightful and useful way of understanding a phenomenon which can be used to inform policy, practice and future research (Dixon- Woods et al 2005, 2006a). Dixon-Woods et al argue that CIS has the potential to go beyond a thematic summary of the literature, beyond accepting that the existing evidence base is the only valid way to understand a phenomenon, and insisting that it must fit under a rubric of ‘systematic review’ (Dixon-Woods et al 2006a,b). They suggest that CIS can “produce new insights and fresh ways of understanding the phenomenon… [it] offers the potential for insight, vividness, illumination and reconceptualisation of research questions, particularly in challenging areas” (Dixon-Woods et al 2006a: 11) CIS seeks to place literature within its context, to question its assumptions and to produce a theoretical model of a phenomenon. The theory is grounded in a comprehensive but not exhaustive body of evidence (Dixon-Woods et al 2005). It recognises the interpretive process required to produce an account of disparate forms of evidence, and is explicit about this, acknowledging the authorial voice in the process. The process starts with a clear but broad research question and uses transparent search and selection strategies, followed by an iterative process of synthesis to draw together conclusions from a wide range of research methodologies. As such it does not claim to produce a reproducible synthesis, but emphasises reflexivity and recognition that alternative accounts of the same evidence might be possible. However, the method reiterates that all accounts should be grounded in the evidence, and should be verifiable and plausible (Dixon-Woods et al 2006a,b). 2.2 Method The CIS methodology links elements of conventional systematic reviews with interpretive approaches to analysis and synthesis of data typical of primary qualitative research (Kazimierczak et al 2013). An organic, creative and interpretive method, CIS has a relatively loosely defined set of processes for synthesising evidence (Greenhalgh et al 2005a). This flexible, ‘no stage’ approach includes question formulation and refining, searching, selection, data extraction, critique and synthesis, which proceed hand in hand in a dynamic and mutually informative way. This creates an iterative, inductive process rather than one that is fixed and sequenced, reflecting the influence of Grounded Theory (Barnett-Page and Thomas 2009, Heaton, Corden and Parker 2012). This adaptation is not unusual however; Ring, Jepson and Ritchie (2011) suggest that those synthesising qualitative research tend to adapt methods to suit their studies. The process focuses ultimately on fashioning a synthesising argument from available evidence, critiquing the quality of evidence, theory and assumptions made (Dixon-Woods et al 2006a). The method can be broadly divided into six interrelated and overlapping phases (table 2.2.1), though the boundaries become more diffuse as the synthesis progresses. I will explain these, briefly discuss their use in other studies and present the results of my synthesis. Table 2.2.1: phases of a critical interpretive synthesis
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