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Scoping review: mapping clinical guidelines and policy documents that address the needs of women who are dependent on drugs during the perinatal period

BMC Pregnancy and Childbirth volume 24, Article number: 84 (2024) Cite this article

Abstract

Background

Women who use or are in treatment for drug use during the perinatal period often have complex needs and presenting comorbidity. Women who use opioids during pregnancy, and their infants, experience poor outcomes. Drug use by women during pregnancy is a public health priority.

This scoping review aimed to (1) map clinical guidelines, treatment protocols and good practice guidance across the UK for women who use or are in treatment for drug use during the perinatal period, (2) identify recommended best practice across health and social care for optimising outcomes and reducing inequalities for these women and (3) identify potential gaps within guidance.

Methods

We followed the Joanna Briggs International (JBI) guidance on scoping reviews and PRISMA Scr extension. A registered protocol, containing a clear search strategy, inclusion, and exclusion criteria was adhered to. Reviewers double screened 25%, discussing disagreements. Data were extracted using a predefined template and charted in tables. Recommendations for best practice were organised around agreed categories.

Results

Of 968 documents screened, 111 met the inclusion criteria. The documents included UK-wide, national, regional, and organisational policy documents. They varied in the degree they were relevant to women who use or are in treatment for drug use during the perinatal period, the settings to which they applied, and their intended users. Most were created without patient or public involvement and lacked any clear evidence base.

Overall, documents recommended an integrated model of care with a lead professional, clear referral pathways and information sharing between agencies. Guidance suggested referrals should be made to specialist midwives, drug, and social care services. A holistic assessment, inclusive of fathers / partners was suggested. Recent documents advocated a trauma-informed care approach. Opioid substitution therapy (OST) was recommended throughout pregnancy where required. Potential gaps were identified around provision of support for women postnatally, especially when their baby is removed from their care.

Conclusions

This synthesis of recommended practice provides key information for practitioners, service providers and policy makers. It also highlights the need for guidelines to be evidence-based, informed by the experiences of women who use or are in treatment for drug use during the perinatal period, and to address the support needs of postnatal women who have their babies removed from their care.

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Key takeaways

  • This review provides a map of the guidelines and policies in this area and will be useful to practitioners seeking to navigate the broad range of available documents and identify what the best practice recommendations are

  • Most documents recommended an integrated model of care with a lead professional and with clear referral pathways and information sharing protocol. More recent documents recommended working in a trauma-informed way, with practitioners recognising women’s complex histories.

  • There was a range of methods used to create guidance documents and evidence drawn on to support recommendations. Guidelines should be evidence-based and written in consultation with relevant stakeholders including service users and people with lived experience.

  • The review identified a gap in recommendations for the care of women who have their babies removed. More recommendations are needed for the support of this particularly vulnerable population.

  • This scoping review identified the need for a systematic review assessing the effectiveness of interventions for this population.

Background

Women who use or are in treatment for drug use during the perinatal period (pregnancy and the first year after birth) often have complex needs and co-occurring health issues including histories of trauma, such as childhood abuse, domestic abuse, mental health problems, or physical health conditions and potential elevated risk of death by suicide or drug related overdose [1, 2]. Higher numbers of women who use or are in treatment for drug use in the perinatal period live in areas of multiple deprivation and often experience low income, poor housing, and a range of health and social inequalities [3, 4]. Since 2007, across the United Kingdom (UK), there has been an increase in the number of infants becoming subject to care proceedings, placed in kinship care or removed from the care of mothers who have complex needs, including drug dependence [5,6,7]. Illicit drug use in the perinatal period raises issues concerning stigma and fear of child removals that arguably do not apply in the same way or to the same extent for alcohol, cannabis, and tobacco use [8]. For this reason, we focused on mapping clinical and practice guidance for the care of women who use or are in treatment for drug use (including illicit and prescribed opioids, stimulants, and benzodiazepines) in the perinatal period, rather than for women who solely use alcohol, cannabis, or tobacco. National Health Service (NHS) maternity services are accessed by almost all pregnant women in the UK, providing an opportunity to monitor and support the health and wellbeing of women and babies through pregnancy, birth, and the postnatal period. Where there are concerns, pregnancy is a key point at which multi-disciplinary teams may come together, to jointly assess and plan for the pregnancy, birth, and future care of the infant [9]. Practitioners across all health and social care services delivering care to pregnant women who use or are in treatment for drug use need clear evidence-based policy and guidance in relation to best practice.

Although policy and guideline documents pertaining to the needs of this population exist internationally, they are often specific to the local, and national context within which they are delivered. This review was primarily concerned with existing guidelines in the UK, although the findings will have relevance to guideline developers and policy makers internationally.

Preliminary searches of Cochrane Library, Joanna Briggs Institute (JBI), Campbell collection and DARE databases suggested that, to date, there has not been a scoping review to map clinical guidance documents currently in use across the UK. Previous reviews, both in the UK and the United States, have focused upon a detailed policy discourse analysis and not provided a general overview of the policy and guideline documents landscape [10,11,12].

Objective

To map the landscape of clinical guidelines, treatment protocols and good practice guidance for optimising outcomes and reducing inequalities for women who use or are in treatment for drug use during the perinatal period.

Aims

  • To identify recommended best practice across health and social care for optimising outcomes and reducing inequalities for women who use or are in treatment for drug use during the perinatal period.

  • To identify any gaps in best practice guidelines in relation to the treatment and care needs of women who use, or are in treatment for drug use during the perinatal period.

  • To inform the development of a rapid systematic review concerned with the effectiveness of interventions for this population.

Definitions

  • We used the term women who use or are in treatment for drug use during the perinatal period to refer to our population of concern: women who use illicit and prescribed opioids, stimulants, and benzodiazepines) in the perinatal period, rather than for women who solely use alcohol, cannabis, or tobacco.

  • The term domestic abuse is used as it refers to the broad range of abusive behaviours that it might include controlling, coercive, threatening, degrading, violent, or sexually violent behaviour. Perpetrators can be current or ex-partners but can also be other family members or carers. ‘Domestic abuse’ is used in a statutory legislative context, in the UK Government Domestic Abuse Act (2021) [13] and the Domestic Abuse (Scotland) Act 2018 [14], as well as within the majority of the guidance documents included in the review.

Methods

This scoping review of clinical guidelines and other policy documents aimed to map UK guidelines, treatment protocols and good practice guidance for women who use or are in treatment for drug use during the perinatal period. We endeavoured to identify recommended best practice across health and social care for optimising outcomes and reducing inequalities for these women in the UK, as well as highlight gaps in policy guidance.

This review focussed specifically upon the UK context as it was undertaken as part of a larger NIHR (National Institute for Health Research) funded study (NIHR130619). A core part of this NIHR study involves researchers working with an expert advisory and coproduction group (EACG), including representatives from policy makers, service providers, practitioners across health and social care, and peer researchers.

Scoping review methodology was selected as it allowed us to include and map a variety of documents, creating a descriptive overview of the guidance landscape in the UK pertaining to our topic [15,16,17]. Scoping reviews were first defined, and their framework outlined by Arskey and O’Malley [16], further developed by Levac et al. [15] and most recently by the JBI methods group [18,19,20].

“Scoping reviews are a type of evidence synthesis that aims to systematically identify and map the breadth of evidence available on a particular topic, field, concept, or issue, often irrespective of source (ie, primary research, reviews, non-empirical evidence) within or across particular contexts. Scoping reviews can clarify key concepts/definitions in the literature and identify key characteristics or factors related to a concept, including those related to methodological research.” [17] [950]

This review was conducted following a registered protocol [21], informed by JBI Scoping review guidance [18], and was reported in line with the PRISMA Scr extension [22]. A scoping review differs from systematic review approach as it does not seek to “to present a view regarding the ‘weight’ of evidence in relation to particular interventions or policies” [16]. The purpose of this review was not to define what best practice is but to present the breadth of what was recommended within current guidelines and policy documents and identify any potential gaps in policy provision.

The predefined search strategy aimed to identify key clinical guidelines and other health and social care policy documents relating to women who use or are in treatment for drug use during the perinatal period, and their babies in the UK. This was an iterative process, with policy and guidelines primarily located within the grey literature, it was necessary for our search to extend beyond electronic databases [16]. Our approach to searching is modelled around guidance by Arskey and O Malley [16], and is common to scoping reviews of policy documents [23,24,25]. Searching was conducted between November 2021 – March 2022 and included:

  1. 1.

    Web-based platforms such as Google Scholar, key government and local authority websites, and organisational and guidance-specific websites (e.g., Royal College of Midwives (RCM); National Institute of Health and Care Excellence (NICE); Scottish Intercollegiate Guidelines Network (SIGN) were searched using identified key words.

  2. 2.

    Electronic database searching (using agreed, database-specific search terms created in consultation with the University of Stirling Health Sciences Librarian, Table 1, and Supplementary Table 1). This was limited to Social Care Online, PsycINFO, CINAHL and Trip, as these were considered most appropriate to capture a broad range of documents, including profession-specific guidance documents.

  3. 3.

    A request was made to all Local Maternity and Neonatal System (LMNS) in England, Wales and Northern Ireland by the London Neonatal Operational Delivery Network via the Operational Delivery Network structure or regional Chief Midwifery Officers.

  4. 4.

    A request for evidence was sent to members of the study EACG as well as other identified UK experts (Supplementary Table 2).

  5. 5.

    The reference list of all included sources of evidence was screened for additional documents.

Table 1 Search strategy
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Identified documents were independently screened by LG, LH, SL, and ES against predefined inclusion and exclusion criteria (Table 2), first by title and abstract / executive summary, and then in full text, with over 25% verified by a second reviewer. Disagreements were resolved by using a third reviewer and/or discussion. A full list of reasons for excluding documents is provided in Supplementary Table 3.

Table 2 Inclusion and exclusion criteria
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The guidance documents were not assessed for quality, as the purpose of the review was to map what the existing guidelines were, and report upon the suggested practice contained within them. Furthermore, quality assessment is not a prerequisite in scoping review methodology [15, 16, 18].

A predefined data extraction template was used to capture key information about each document. Next, we charted key characteristics (applicability, setting, intended user of the document, relevance, and evidence base) (Table 3), and mapped key best practice recommendations (Table 4). Tables were created during the charting process to organise and present data.

To support charting, categories of recommendations were developed. Researchers LG, LH, SL and ES summarised the main types of recommendations made within a sample of included documents and agreed categories (Table 5). This allowed identification of both commonly made suggestions, and any distinctive or contradictory examples.

Patient and public involvement

The scoping review protocol, results and findings were shared with the EACG, and their feedback was invited and incorporated into the review. This included sharing initial drafts of the protocol, results of the search and findings with two peer researchers (who have consulted with experts by experience as part of their role in the EACG) who provided constructive feedback around language that was then used to adapt the introduction and initial search criteria. Additionally oral presentations of the protocol, results of the search, and findings of the review were made to the full EACG who supported refinement of our search strategy and suggested informants who may have been able to help identify relevant guidelines / policy documents that were not publicly available. Following presentation of our findings and distribution of a summary report of preliminary findings, discussion amongst EACG members helped to identify potential gaps within the guidelines, such as the provision of mental health support for mothers after their babies have been removed.

Results

Following screening, a total of 111 guidelines or policy documents published between 2000 and 2022 were included [9, 26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121,122,123,124,125,126,127,128,129,130,131,132,133,134,135] (Fig. 1: PRISMA diagram). The following narrative briefly describes the key characteristics of the included documents (which are presented in full in Tables 3 and 4 and Supplementary Tables 4, 5, 6) before summarising the recommendations for identified thematic categories.

Fig. 1
figure 1

PRISMA diagram

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Table 3 Key characteristics
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Table 4 Best practice recommendations
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Characteristics

Geographical coverage and intended users

The four UK nations have their own health care systems, with independent policies and guidelines in addition to taking lead from NICE (a UK wide executive public body funded by UK Government, which provides guidance, advice, quality standards and recommendations relating to health and social care, including clinical practice). The documents included in this review covered a range of geographical areas and were written for a variety of intended users. One international document applicable within the UK was identified [135], 26 documents were UK-wide, 20 were specific to Scotland, or Northern Ireland or England and Wales, and one document was specific to Wales (Table 3).

Documents were designed to be implemented by a wide range of users (maternity staff, healthcare professionals, social workers, substance use service staff and pharmacists etc.), with some relevant to more than one user group. Notably, 14 documents stated they could be used by patients or service users (Supplementary Table 4).

Setting

Approximately half the documents were applicable in any setting where a professional may be supporting a pregnant woman who is using, or in treatment for drug use (n = 60). Some were specific to hospital care (n = 21), or for use within a community setting (n = 13) (including community midwifery services, community pharmacies and substance treatment services) (Table 3).

Relevance

Most included documents were relevant across the whole perinatal period (n = 85), with 17 also applicable to families throughout childhood, for example, child protection and safeguarding guidance. Twenty-three were relevant to women during pregnancy, and only three were specific to the postnatal period (Table 3).

The relevance of documents to pregnant women who use or are in treatment for drug use, and their babies varied; some were entirely specific to drug use during the perinatal period, whilst others included specific sections or brief mentions for the population. Universally relevant documents were also identified, which provided overarching guidance and directives for groups and individuals on a broader topic (such as vulnerable pregnancies) but included pregnant women who use or are in treatment for drugs within its scope (Supplementary Table 5). Forty-four of the documents specifically referred to this population as vulnerable (Table 3).

Evidence base

Documents varied in their development methods and extent to which they were evidence-based. Just over half (n = 61) were unclear about development methods, with the remainder outlining approaches including conducting a review of evidence, expert opinion or consultations with service users or with the public. Ten documents used all three methods, with the remainder employing one or two of the approaches (Supplementary Table 6).

While twelve documents did not report drawing on any form of evidence, most cited between one and three different types of evidence, and twenty-six referenced between four and six different types of evidence (Supplementary Table 6). The most common form of evidence cited was other guidance documents (including NICE and SIGN guidance, reports, policies, and strategies).

Recommendations

Overarching/organisational approach

Guidance relating to an overarching organisational approach (Table 5) focused on multi-agency working and systems to support this, including information sharing, collaboration, and shared care-plans. Recommendations for organisations included developing and delivering training [43, 90, 91], asking women about the acceptability of services and co-producing local services with women [57], increasing maternity staffing levels including specialist midwives [91], creating a working group [91], and improving recording and monitoring systems in maternity care [57] (Table 4 and Supplementary Table 6).

Table 5 Categories of best practice recommendations
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Philosophy of care and engagement

Guidance relating to how practitioners’ approach and care for pregnant women who use or are in treatment for drug use (categorised as philosophy of care / engagement approach; Table 5, Table 4 and Supplementary Table 6) was identified in over half of included documents (n = 64).

Overall, a non-judgemental, sensitive, and respectful attitude to women who use or are in treatment for drug during pregnancy was recommended. There was also advice around understanding and considering the woman’s wider circumstances, and family situation. Adopting a trauma-informed approach was specifically mentioned in more recent included documents (n = 21) and was first identified in the WHO (2014) guidance. Some of the child protection and safeguarding procedures suggested staff should be mindful that drug use is only one factor affecting pregnancy and does not necessarily mean parents are unable to provide ‘good enough’ parenting or a child is at serious risk of harm (Table 4 and Supplementary Table 6).

The NICE guideline, ‘Pregnancy, and complex social factors’ [95] recommended consistency and continuity of care, together with offering a flexible approach to support the engagement of pregnant women who use or are in treatment for drug use, as they may find engaging with services difficult. This way of working was echoed within many other included guideline documents, with references to the NICE guideline [95] (Table 4 and Supplementary Table 6).

Additionally, documents included discrete recommendations for care approaches such as using a care planning / care-coordination approach [46, 48, 130], utilising a recovery-based approach [125], and advocating for prevention and early intervention [49, 109, 113]. Training to ensure practitioners understand the complex needs of pregnant women who use or are in treatment for drug use was suggested in five documents [43, 75, 90, 91, 95].

Assessment

Guidance for the assessment of pregnant women who use or in treatment for drugs addressed the period from the maternity service antenatal booking appointments, pre-birth child protection and safeguarding assessments through to labour pain management and hospital discharge arrangements. Across all types of documents, some consistent practice recommendations were identified, including the importance of assessing and asking questions about substance use and not assuming other professionals will. There were also specific tasks to be completed such as screening for blood borne viruses.

A multi-agency approach to assessment, with an identified lead agency was preferred. It was commonly suggested that assessment should consider the wider social, emotional, and practical needs of the individual (for example access to housing etc.). Many documents also stated fathers or partners should be included in assessment, with some suggesting a family-based approach be taken.

Risk assessment was described as an on-going process that should be continuous throughout pregnancy. Most documents focused on the risk to the unborn or new-born baby, with the safety of the child as the central concern (See Child Protection / Safeguarding Procedures below).

A range of assessment tools were identified including: SHANARI Wellbeing Assessment tool [83]; Pre-birth triangle [107]; Pre-birth Vulnerability Screening Tool [127]. Many documents also included specific assessment flow charts within their appendices (Table 4 and Supplementary Table 6).

Referral pathways

Clear referral pathways for pregnant women who use or are in treatment for drug use were recommended in many documents (Table 4 and Supplementary Table 6). Flow charts outlining referral pathways were often included within appendices. Most documents recommended a referral to specialist midwife services (substance use; additional needs and vulnerabilities; safeguarding) and drug services both for women and their partners if not already engaged in drug treatment. Referrals to mental health and counselling services for women were also recommended. Most documents that covered assessment and care planning, outlined when referrals should be made to children’s social care / child protection services (see Child Protection / Safeguarding Procedures below).

Prescribing guidance

Of the included documents, eight were specifically focused on prescribing guidance for women who use opioids, whilst others included sections or reference to this. Overall, suggested practice was to refer women who use opioids to drug treatment services for assessment and opioid substitution treatment (OST), which recommendations stated should be prescribed throughout pregnancy, including during labour.

Although one recently published guideline [131] stated buprenorphine has been shown to have better neonatal outcomes than methadone, citing evidence of visual impairment in infants exposed to methadone prenatally, most documents suggested methadone is preferred over buprenorphine during pregnancy. Most documents advocated for OST as part of a harm reduction approach although one document suggested “Abstinence can be helpfully thought of as the ‘final goal’ of harm reduction” [42] appearing to challenge the idea of harm reduction as a legitimate alternative to abstinence from OST.

Where detox was deemed medically necessary, most documents advised not detoxing women in their third trimester (due to associated risks) and suggested if detoxification from opioids was conducted, it should be during the second trimester in small, frequent reductions. There were some recommendations for in-patient opioid detoxification with women’s informed choice and managed detoxification from benzodiazepines and cocaine (Table 4 and Supplementary Table 6).

Clinical and practice guidance

Many documents were clinical guidelines or contained practice guidance specific to pregnant women who used or were receiving treatment for drug use, and several contained a step-by-step guide outlining the treatment and care to be provided at each point throughout pregnancy (Table 4 and Supplementary Table 6).

Practice guidance included encouraging women to access antenatal care, the provision of information on the effects of drugs and alcohol on the fetus and the risks of neonatal abstinence syndrome. There were also specific suggestions to measure the abdominal circumference of women using benzodiazepines at 28–30 weeks, and 32–34 weeks [27] in order to monitor for intrauterine growth restriction (IUGR) [136]. There were some recommendations to conduct drug testing at booking, throughout pregnancy, and in labour, with different documents recommending differing time scales for this (Table 4 and Supplementary Table 6), and one suggestion that urine testing should be supervised [26].

In general, the documents suggested standard intrapartum care should apply, with guidelines concerning pain relief during labour recommending women should be prescribed pain relief as needed, regardless of whether they were receiving OST. Most recommended women should continue to have access to OST while in hospital, and there were detailed protocols for sharing prescribing information between drug services, maternity staff, anaesthetists, and hospital pharmacists, including arranging for provision if, for example, women were admitted to the labour ward at the weekend (Table 4 and Supplementary Table 6).

Recommendations for a woman and her baby to be observed for Neo-natal Abstinence Syndrome (NAS) in hospital were identified in 14 documents, with lack of consensus regarding the length of post-birth monitoring varying from 72 h (n = 9), four days (n = 1) [32] and 5–7 days (n = 4) [45, 67, 77, 131]. Overall, documents recommended breastfeeding was to be encouraged unless the mother was using cocaine, was HIV positive, or on high doses of benzodiazepines (Table 4 and Supplementary Table 6).

Child protection/safeguarding procedures

Recommendations related to safeguarding or child protection procedures were included in almost half of the included documents (n = 45) (Table 4 and Supplementary Table 6). A key recommendation was that any agency with concerns about risk to an unborn or new-born baby should make a referral to children’s social care / social work where parental substance use was identified. Additionally, five documents outlined that if a child is born unexpectedly with NAS, an immediate referral to social work must be made [45, 47, 89, 94, 133]. Clear guidance around information sharing between agencies was often provided, emphasising that confidentiality was over-ridden in the interest of protecting the child. Some documents also stated women should be informed of what information was being shared and where possible, this should be done with their consent [71, 104, 108, 124, 134].

Of the 14 documents which contained recommendations for the timing of child protection case conferences and pre-birth assessments there was some variation. While some documents only stated that these should be conducted early on in maternity proceedings, [54, 63] most specified that these be conducted before or by 28 weeks [33, 52, 67, 94, 124] with some also noting that conferences should occur within 21 days of a late notification [64, 129] or with 28 calendar days of a concern being raised [82]. Other documents recommended that conferences be held between 28 and 32 weeks [71], or before 32 weeks gestation [107, 113, 127]. Clear multi-agency care plans were to be co-ordinated by a lead professional and where child protection concerns were identified it was recommended they were social work led, and that the plan be communicated clearly with the parents. It was also suggested a discharge planning meeting be held prior to a woman and baby leaving the hospital, with a full discharge care plan in place for all scenarios including when a baby needed to be accommodated separately from the mother (Table 4 and Supplementary Table 6).

Involving the father and wider family in any assessment was generally encouraged, and four documents stated the parenting skills of fathers should be assessed alongside mothers [43, 61, 71, 96].

Specific recommended Interventions

There were only a few recommendations for use of psychosocial interventions with prescribed modes of delivery. These included: Parents under Pressure [44]; Intensive parenting programmes [64]; Care planning / Care co-ordination approach [46]; Safe & Together Intervention model (Domestic Abuse) [59, 137]; Community hub model [70]; Peer support intervention programme [91] and motivational interviewing [64, 131](Table 4 and Supplementary Table 6).

Discussion

This scoping review sought to map UK clinical guidelines, treatment protocols and good practice guidance for optimising outcomes and reducing inequalities for women who use or are in treatment for drug use during the perinatal period. Overall, included guidance and policy documents made consistent suggestions regarding best practice; for example, multi-agency working, information sharing, and clear referral pathways. The importance of engaging women in antenatal services was frequently stressed, and they were often identified as a vulnerable or disadvantaged population (Table 3). There were references to adopting a non-judgemental, holistic approach that considered wider social, economic, and psychological issues (for example, housing, domestic abuse), and within more recent documents, a trauma-informed care approach was advocated. There were consistent recommendations relating to detoxification and intrapartum care.

There were a few notable differences between documents, which are worth highlighting, as variations in recommended practice such as these could result in inconsistencies in practice. For example, the NICE guidance [85] updated in 2022, states neither methadone or buprenorphine adversely affect neonatal outcomes, although they refer to emerging evidence that buprenorphine results in less severe NAS, which is consistent with the 2014 WHO Guidelines [135]. Although most OST prescribing guidelines recommended methadone, a recent document from NHS Highland [131] suggested buprenorphine was preferred as there have been associated poor physical health outcomes for babies born to mothers prescribed methadone. Recent systematic review evidence suggests buprenorphine has better health outcomes for infants than methadone [138]. This highlights the need for guideline developers to ensure recommendations are informed by the most up to date evidence and are reviewed regularly as research evidence can change quickly, and its application can be complex as it may be dependent upon the women’s individual circumstances. There was also lack of consensus identified around timescales and protocols for drug testing women in pregnancy, the lengths of time neonates should be observed for NAS and timings of case conferences and pre-birth assessments, further highlighting the need for available evidence to be reviewed and women’s experiences to be captured to support policy and guidelines.

More recent clinical guidelines emphasised adopting a holistic, trauma-informed care approach toward mothers. Involving partners and the wider family in the assessment and care planning process was also a key suggestion supported by the wider child protection, substance use, and domestic abuse policy context. For example, the Scottish Government family policies such as GIRFEC [139], The Best Start, [140] Rights, Respect and Recovery [102], and Women’s Health Plan [141] at a very broad level also advocated holistic assessment and trauma-informed care approaches. Many of the safeguarding documents identified from England which often drew on findings from the ‘Hidden Harm’ report [142] seemed to have a greater focus on risk of harm to the unborn and new-born baby. While some emphasise substance use does not necessarily mean parents are unable to provide ‘good enough’ parenting [29, 81], children’s social care policy documents in Scotland, and England and Wales nevertheless suggest women’s drug use in pregnancy can be a form of neglect [82, 132]. This focus on harm has been recognised in a recent policy review by Whittaker et al., [10] and could contribute to women’s reluctance to engage with services for fear of being stigmatised, and having their baby removed from their care [143, 144]. Balancing the complexity of the many medico-legal issues surrounding women who use or are in treatment for drug use and their babies such as the protection of the un-born child, and the mothers needs and rights raises many ethical issues. However, as Lupton (2012) has argued in regard to good practice and clinical guidelines, the mother’s needs and rights are often de-prioritised vis-a-vis those of the child [145].

There was a lack of guidance in relation to supporting women whose babies have been removed from their care suggesting a gap in policy for the support of these women who are recognised as being at high risk of suicide and drug overdose [146, 147]. Although guidelines currently in development outlines the need to support parents whose babies are removed from their care [148], they are not specific to women who use, or are in treatment for drug use or focused upon identifying or supporting the mental health needs of these women.

Despite the explicit recognition in many documents that domestic abuse may be a compounding factor for this population of women, there was a general lack of any specific recommendations for practitioners on how to involve fathers and yet remain vigilant about, and assess women’s exposure to, domestic abuse. There was one exception; ‘Families Affected by Drug and Alcohol Use in Scotland: A Framework for Holistic Whole Family Approaches and Family Inclusive Practice [59], the Scottish Government (2021) policy document which recommends using the Safe & Together model [137].

Within health and social care professions there is an expectation that policy and practice will be ‘evidence-based’ [149, 150]. The WHO guidance aimed at perinatal drug use [135], for example provided an evidence review for each of its included recommendations and categorises the strength of a recommendation based upon both the evidence and its applicability across different contexts. However, these guidelines are only cited in eight included documents [41, 54, 73, 77, 85, 97, 105, 117]. The UK NICE Guidelines ‘Pregnancy and complex social factors’ does not cite WHO (2014) guidance, but does include systematic review and RCT evidence, although it is unclear which specific recommendations they support. Only 28% of included documents cited systematic review or meta-analysis evidence, 53% referred to other guidelines, and the most frequently cited were NICE guidelines [34, 95, 151] (Supplementary Table 6).

The variability in how guideline documents are created has been recognised [149, 152] and is not particular to those included within this study. Although literature suggests guideline development should involve collaboration with representatives from those impacted by the subject [149], only 19% of included documents reported consulting stake holders, either with the public, service users, or people with lived experience (Supplementary Table 6) with only 13% mentioning that they could be used by pregnant women or their families (Supplementary Table 4).

Strengths and Limitations

This is the first scoping review of UK clinical guidance and related policies that address the care needs of women who use or are in treatment for drug use during the perinatal period. It provides new knowledge by identifying and synthesising current recommended best practice, as well as identifying potential gaps, and inconsistencies between the documents. Additionally, and of relevance to the creators of guidelines and policy documents, it presents an overview of the evidence upon which the included documents are based, together with an insight into how they were created. The review was conducted by a team following rigorous process, and registered protocol [21].

As is the case with scoping reviews more generally, despite adopting a systematic approach to searching and screening, identifying documents to be included was an iterative process and there may be documents that were missed or published since the conclusion of the search. We acknowledge we only found one Welsh document which met the inclusion / exclusion criteria despite purposive searching and specific enquiries to experts in the field based within Wales. We also note that although our scoping of UK good practice and clinical guidelines is limited to the UK context our findings, particularly our observation that guidelines should be informed by the most up to date evidence, are likely to have relevance for other national settings. Furthermore, although seeking to identify documents within a set timeframe provides a reliable snapshot of the guidelines in use at the time of the search, and allowed us to answer or research question, it does not allow for the contextualisation of how these documents have changed over time. Key documents that were identified and published post conclusion of the review have been considered in our discussion.

It is possible that another limitation of the scoping review methodology is the omission of quality appraisal and the lack of prescriptive arguments [16]. However, what is presented here provides a robust overview of what clinical guidelines and policy documents suggest best practices to be in supporting women who use drugs during the perinatal period and will, as such, prove a valuable resource to both practitioners and policy decision makers [153]. Additionally, this review was undertaken as part of a much larger study (NIHR130619), and the authors are also conducting a mixed method systematic review of the intervention literature which will assist future guideline developers and policy makers in identifying the evidence base.

Conclusions & recommendations

In this scoping review to map UK clinical and best practice guidelines for the care of women who use or are in treatment for drug use in the perinatal period we found consistent messages for professionals based on a core range of primary documents that were referred to. We identified and mapped broad range of best practice recommendations, providing a valuable resource for service providers and practitioners alike. However, we also identified gaps that highlight the need for the development of clinical and best practice guidelines in the UK that are (1) coproduced with women with experience of drug use in pregnancy (2) based on research evidence for approaches that improve outcomes for pregnant women who use or are in treatment for drug use; and (3) also address the support needs of postnatal women who have their baby removed from their care. This review also supports the need for and will inform our systematic review of the research literature to establish which treatment approaches and models of care there is evidence to support.

Availability of data and materials

No additional data available.

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Acknowledgements

We would like to acknowledge support from Clare Crowley, the University of Stirling Health Sciences Librarian who validated our search strategy.

Funding

This project is funded by the National Institute for Health Research (NIHR) Health Services Delivery and Research programme (project reference NIHR130619). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. No other funding was sought or provided for this review.

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Authors and Affiliations

  1. Nursing, Midwifery and Allied Health Professions Research Unit, Pathfoot Building, University of Stirling, Stirling, FK9 4LA, Scotland

    Lynne Gilmour, Louise Honeybul, Helen Cheyne & Margaret Maxwell

  2. Department of Behavioural and Social Sciences, University of Huddersfield, Queensgate, Huddersfield, HD1 3DH, UK

    Shirley Lewis & Brid Featherstone

  3. National Addiction Centre, Kings College London, Denmark Hill, London, SE5 8BB, UK

    Emma Smith, Joanne Neale & Polly Radcliffe

  4. Homerton University Hospital, Homerton Row, London, E9 6SR, UK

    Narendra Aladangady

Authors
  1. Lynne Gilmour
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  2. Louise Honeybul
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  3. Shirley Lewis
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  4. Emma Smith
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Contributions

All authors contributed to the conceptualization of the review. PR, LG, LH, SL, and ES led the protocol development, which was discussed, reviewed, and agreed by all authors. LG, LH, SL and ES conducted the search. LG, LH, SL, ES and PR completed and verified data extraction. LG and LH led charting the key characteristics of the documents, with all authors reviewing, commenting, and contributing to this process. LG, and LH led the development of categories of best practice recommendations, with SL, ES, and PR contributing to data curation. Authors HC, PR, NA, BF, MM, and JN supervised the review process. LG and LH led the writing, reviewing, and editing of the first and final drafts. All other co-authors contributed to writing, reviewing, and editing. PR, and HC, led funding acquisition for the study with support from NA, BF, MM and JN.

Corresponding author

Correspondence to Lynne Gilmour.

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No ethical approval was required for this study as it did not involve human or animal participants.

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The authors declare no competing interests.

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Gilmour, L., Honeybul, L., Lewis, S. et al. Scoping review: mapping clinical guidelines and policy documents that address the needs of women who are dependent on drugs during the perinatal period. BMC Pregnancy Childbirth 24, 84 (2024). https://doi.org/10.1186/s12884-023-06172-6

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BMC Pregnancy and Childbirth

ISSN: 1471-2393

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