Research design

We undertook a systematic literature search of the existing qualitative evidence and a Critical Interpretative Synthesis informed by Dixon-Woods [31]. Similar to Noblit and Hare’s principles of meta-ethnography [35], Critical Interpretative Synthesis aims to go further than describing (or aggregating) what has been previously reported [31, 35]. In our case, we anticipated that included studies would span a wide range of healthcare settings, and we aimed to go beyond data synthesis to create a new conceptual framework of healthcare interactions amidst CP processes. Critical Interpretative Synthesis, with a focus on theory-generation, was found to be best suited to meet these objectives whilst providing more flexibility than Noblit and Hare’s Meta-ethnography approach [31, 36, 37].

Review team reflexivity

The review team consisted of academics and clinical academics, with backgrounds in midwifery (KDB, HRJ, TB, EM, JS) sociology (JS) and psychology (BLT, AE). Several team members have extensive clinical experience of providing enhanced midwifery care to women in vulnerable positions, warranting social services involvement, whether this is due to substance use disorders (TB), severe or complex mental health needs and learning disabilities (KDB), or a range of social risk factors (HRJ). One team member (BLT) is a clinical academic with experience of working in perinatal mental health services and in Looked After children services (i.e. where a child has been removed from parental custody). As such, the team has first-hand professional experience of working in a multi-disciplinary context of healthcare, alongside children’s social care and other agencies and third sector involvement.

Lived experience involvement

This review was undertaken in the context of a doctoral research study (MUMS@RISC study) funded by the National Institute of Health and Care Research (NIHR). A designated advisory panel of women with lived experience of infant removal shortly after birth was formed for the purpose of continuous lived experience involvement throughout the entire project. Principles of trauma-informed patient and public involvement [38] have been at the core of the advisory panel, with the co-created MUMS@RISC Charter for Research Engagement. The panel is consulted at regular intervals throughout the doctoral study and initial findings of this review were discussed during panel meetings in November 2023 and January 2024, and informed the development of the final theoretical framework and synthesising concepts. A first draft of the visual display of review findings was discussed and co-designed and the panel’s feedback was incorporated in the final version. Members of the MUMS@RISC advisory panel are reimbursed for their time, with regular check-in provided as part of the wider doctoral study lived experience involvement work.

The review question and search strategy

We followed PRISMA reporting guidelines [39] (S1 Table) and prospectively registered the study protocol on PROSPERO (The International Prospective Register of Systematic Reviews, registration number CRD:42022381632). The review question was informed by the PerSPE©TIF framework, which has been reported to be well-suited for qualitative evidence syntheses [40] and defined as follows: “What are the experiences of pregnant and postnatal women and healthcare professionals regarding healthcare while facing child protection in the perinatal period?”

The search strategy, with its pre-defined inclusion and exclusion criteria as outlined in Table 1, was carefully designed in consultation with the review team and with valuable support from a university librarian and followed the same PerSPE©TIF framework. Aspects of the search strategy also built on previous work by one member of the review team (BLT) [41]. Various draft versions of the search strategy were piloted through scoping exercises in different databases, before the formal run of the database searches. The search strategy included MeSH headings and free-text terms based on the key concepts of the PerSPE©TIF framework, with subject headings adapted in line with the particular database and can be found in S1 Table. For this review a broad definition of healthcare as the ‘phenomenon of interest’ was used, meaning any intervention, contact or effort to prevent, detect, diagnose, treat, improve or cure physical and mental disease or impairment, provided by trained healthcare professionals. This included both hospital-based and community care, including home visits.

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Table 1. Inclusion and exclusion criteria.

https://doi.org/10.1371/journal.pone.0305738.t001

Eligible studies in English were identified using database specific search strategies in nine electronic databases: Web of Science, MEDLINE, EMBASE, PsychINFO, CINAHL, Maternity and Infant Care (MIDIRS), Social Policy and Practice, Applied Social Sciences Index and Abstracts (ASSIA) and Global Health. Database searches were conducted between January 4^th and 30^th 2023 and updated on February 16^th 2024, to ensure we captured any more recent literature. We carried out forward and backward citation tracking as well as reference list screening of included studies to identify additional relevant primary research studies, and used OpenGrey and ProQuest to search for relevant unpublished primary research.

Search outcome and screening

Searches were carried out by the first author, with search results uploaded in Covidence software, and duplicates removed. All titles and abstracts were double-screened, with one reviewer (KDB) screening all search results and members of the review team (AE, HRJ, TB, EM and BLT) conducting the second screen. Full text screening followed a similar double-screening approach. Discrepancies were resolved through discussion and consultation during regular review meetings with the wider review team and a decision log was available to the entire review team, to document the decision-making process.

Quality appraisal

The quality of included studies was appraised using the Critical Appraisal Skills Programme (CASP) qualitative checklist [42], which is the most commonly used appraisal tool for qualitative studies and endorsed by the Cochrane Qualitative and Implementation Methods Group [43]. The checklist consists of three sections with a total of ten questions to assess the methodological quality and rigour of included studies: the first two sections (A: ‘Are the results of the study valid?’ and B: ‘What are the results?’) contain nine questions with yes/can’t tell/no answers. In addition to the methodological quality and rigour of studies, we also identified service-user involvement and trauma-informed approaches as additional areas of assessment relevant to our review. The review team therefore included the following questions to assess principles of co-design, public and patient involvement and trauma-informed approaches in each of the included studies: 1) Was there a trauma-informed approach or distress protocol for participants in place?; 2) Does the study report on any patient and public involvement activities as part of the study design? We categorised studies for both questions as ‘none reported’ if there was no mentioning at all of any relevant items, ‘some reported’ if studies mentioned at least one relevant element (e.g. consideration of a safe environment, check-in, participant reimbursement, piloting interview guide, etc.), and ‘considered’ if studies reported multiple elements of the above. All studies were rated against the nine CASP questions and the additional questions as described above by the first author, with a subset of 20% of included studies doubly rated by a member of the review team. No disagreements on quality ratings occurred. The overall quality of each study was categorised as ‘strong’ (CASP score 7–9), ‘moderate’ (CASP score 4–6) or ‘weak’ (CASP score 0–3). Only studies considered ‘strong’ or ‘adequate’ were included to support trustworthiness and credibility of the review findings. No studies were excluded on the basis of lack of public and patient involvement or trauma-informed approaches, but findings were interpreted with careful consideration of the ethical shortcomings of these studies.

Data extraction

A moderate selective approach to data extraction was adopted in order to only extract findings substantiated by direct data or quotations and relevant to the research question [44]. A designated data extraction form was created in Covidence software to facilitate data extraction and the first author extracted all relevant data accordingly. Data extraction of a subset of 20% of included studies was checked by members of the review team and consensus was reached where this was required. All extracted data was imported into NVivo software under a unique study ID for each included study.

Data synthesis and assessment of confidence in the review findings

Data were synthesised according to Dixon-Wood’s principles of Critical Interpretative Synthesis (CIS) [31] and guided by several worked examples in the field of midwifery and nursing [36, 45–47]. CIS has two distinct components that transcend a descriptive or aggregative approach to evidence synthesis: Phase 1) initial exploration and inspection of the included studies similar to that undertaken in primary qualitative research, with identifying recurrent themes and developing a critique of the existing evidence; Phase 2) generating a synthesising argument [31]. The first phase of data synthesis as part of CIS was carried out with NVivo software, iteratively generating an inductive and data-driven codebook (S3 Table). We initially coded studies focussing on women’s experiences and subsequently focussing on studies capturing HCPs’ experiences. We then returned to the women’s papers to sense-check the single coding frame generated.

During the second phase, the different codes were grouped together to facilitate the next step of data synthesis, i.e. the creation of a ‘coherent theoretical framework’, before reaching the final stage of the synthesis, i.e. the development of a ‘synthesising construct’ [31]. This work was led by the first author and refined through iterative feedback with the wider review team and sense-checked by the members of the MUMS@RISC advisory panel. Their feedback was incorporated in the final study results as presented in this paper.

Search results

Overall, 5,261 search results were retrieved from database searches, grey literature and citation tracking and imported in Covidence. A total of 3,343 studies were screened for title and abstracts after duplicates were removed (n = 1,918). The full text of 278 studies were assessed for eligibility, with 46 studies meeting all inclusion criteria. The PRISMA diagram is presented in Fig 1. Subsequently one study was excluded due to overall poor methodological quality [48] and four studies were merged at a later time as they were found to report on the same study [9, 49–51].

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Fig 1. PRISMA diagram.

https://doi.org/10.1371/journal.pone.0305738.g001

Description of included studies

A total of 41 studies were included in this review, including three PhD dissertations and five studies with findings published over two separate peer-reviewed papers, all of which were included in the review. A full overview of characteristics and quality assessments of included studies can be found in Table 2.

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Table 2. Description of included studies.

https://doi.org/10.1371/journal.pone.0305738.t002

Included studies were published between 1993 and 2024, with study settings predominantly in the Global North, including Cananda (n = 4) [52–55], Germany (n = 1) [56], United States of America (n = 16) [50, 51, 57–74], United Kingdom (n = 7) [9, 49, 75–80] and Australia (n = 12) [13, 15, 81–89]. One study was carried out in Brazil [90]. Nine studies included both women’s and HCPs’ views, twenty-two studies focused on women’s perspectives only and ten studies focused on HCPs’ perspectives only. Most data werecollected through individual interviews and focus groups, representing the views of a total of 1040 women and 307 HCPs. Most studies had a specific vulnerability focus that warranted involvement from CP agencies, of which twenty-four mentioned substance misuse, two homelessness, one intellectual and/or developmental disabilities and one co-occurring intimate partner violence and opioid use disorder [72].

Quality assessment

Most included studies were categorised as ‘strong’ (n = 30), with eleven studies being considered ‘adequate’. Overall, concerns around methodological quality were mostly situated around a lack of detail regarding the methods of data analysis, clear statement of findings and issues around positionality of the researcher. A similar concern was found when assessing the use of trauma-informed approaches and patient and public involvement in the research design, with only nine studies providing detailed trauma-informed considerations of conducting research with vulnerable women and only five studies reporting on of robust lived experience involvement, either at the stage of study design or sense-checking of study findings. When combining all three assessment criteria, only one study was found to be of strong methodological quality, with robust considerations of trauma-informed approaches and service-user involvement [53]. In contrast, one study was considered adequate with no considerations at all for trauma-informed approaches and service-user involvement, even though its focus was postnatal women with substance use disorders [55].

Phase 1: Data familiarisation and formulating a critique of the existing evidence

During the first phase of familiarisation and iterative coding, we found that similar themes were present in both women’s and HCPs’ accounts, yet only interpreted from one point-of-view. For instance, studies reported on the importance of ‘trust’ for women to feel safe with a HCP and only then would they feel comfortable to disclose the extent of their issues [15, 55, 59, 60, 63, 77, 85]. Conversely, several studies capturing HCPs’ experiences reported that they were fully aware trust was an essential requirement to provide optimal care to women [57, 72, 75, 80–83, 90, 91]. Continuity of care provider was often mentioned by HCPs and women as a pre-requisite to build a relationship of trust and honesty [49, 75, 80–83, 85, 89–91]. However, many studies mentioned judgement and stigma interfering with the process of relationship-building, leaving women distrusting HCPs and undermining disclosure [49, 55, 60, 63, 71, 72, 77, 83, 85]. This ‘catch-22’ of incompatible conditions to facilitate positive interactions was found across several themes and subthemes. Another example is ‘feelings of motherhood’: several studies mentioned how women felt encouraged in their identity as a mother by their HCP and how this empowered them to engage with healthcare and the CP process [15, 53, 57, 60, 63, 67, 68, 75, 92]; Conversely, other studies mentioned women felt their identity as a mother was challenged and scrutinised, leading to distrust and feelings of shame and judgement [51, 55, 60, 71, 72, 75, 76, 83, 85, 87]. As a result, almost all studies discussed the identity of motherhood with a lack of depth and complexity and overlooked the role of healthcare interactions to the cyclical development of feelings of motherhood.

Overall, many of the studies included in our review offered a predominantly static view of healthcare interactions and engagement, and provided a one-dimensional explanation of how these encounters are perceived, both by women and professionals. The complexity and fluctuating appraisals of healthcare interactions over time, based on a myriad of factors both within the individual as well as the wider organisational and societal context, was often not explored in depth. Few studies aimed to untangle how one aspect—for instance fear of detection of substance use—can be a barrier to healthcare at one timepoint, and a facilitating factor at another point, for the same woman, during the same pregnancy [51, 55, 63, 70]. As a result, the strength of this review is to bring these various viewpoints together to create a holistic understanding of how healthcare encounters are constituted, how they fluctuate and what their potential outcomes are.

Phase 2: Generating a synthesising argument

During the second phase of CIS, we grouped codes together to facilitate the next step of data synthesis, i.e. creating ‘synthesising theoretical constructs’. We identified patterns of interactions between women with CP involvement and HCPs involved in their care, and grouped individual, interpersonal, organisational and societal conditions that influenced these reciprocal relations, either negatively or positively. Our review findings are visually displayed in Fig 2 and represent the key synthesising constructs that were distilled from our interpretation of included studies. Key concepts are illustrated with representative quotations from included studies in the following paragraphs.

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Fig 2. Visual display of review findings.

https://doi.org/10.1371/journal.pone.0305738.g002

‘Doing what is best for the baby’–One objective, two sides of the same coin

We identified from the majority of included studies that both women and HCPs had one common objective: to do what is best for the (unborn) baby [15, 54, 55, 60, 62–64, 66–68, 70, 73, 76–78, 80–82, 85–87, 89].

"We are here because we want to do the right thing. That is the right thing by ourselves and the right thing by our babies. It’s like a business partnership, a two-way street. You each want the best outcome for the child.” (Pregnant woman with substance addiction, Australia) [85]

“I just want the best for him. … I don’t want him to be exposed to that life. I don’t want him to think I neglected him at all, because I didn’t. I changed my whole life around for him, and myself, but him first.” (Postnatal woman with substance use disorder, USA) [51]

"What I feel my role is and that is to protect the child at all costs really." (Midwife, UK) [79]

However, both women’s and HCPs’ actions were underpinned by juxtaposing risks they needed to manage. The dichotomous interpretation of how to achieve the common objective acted as two sides of a coin: For women, managing the risk of an unfavourable outcome by child protection services was going to determine if they felt able to safely enter the healthcare system, or whether it was preferrable to avoid contact with healthcare professionals [15, 51, 55, 60, 62–64, 66–68, 70, 72, 76, 77, 85–87].

"Knowing that they were gonna test me for drugs, that’s what scared me…That’s why I didn’t go to prenatal care…I didn’t want to lose my baby." (Pregnant heroin user, USA) [62]

“There are women who don’t seek care because they don’t want [Child Protection Agencies] involved. Same is true with intimate partner violence, they’re ashamed, they don’t want [Child Protection Agencies] involved. So again, that being co-occurring, I think the biggest barrier.” (Healthcare professional, USA) [72]

Several studies reported that women’s determination to ensure the baby’s wellbeing acted as a motivator to enter healthcare, even when they feared subsequent CP involvement [15, 55, 64, 66, 67, 73, 85, 89].

"[Fear of Child Protection Services] made me not want to go, but because I was high risk, there was a greater chance […]. I care more about my son being ok…so, I never missed a[n] appointment." (Woman with substance addiction, USA) [67]

Conversely, for HCPs, the dilemma was of a different nature, and the challenge of managing the risk of harm to the baby while also maintaining a relationship with the mother(to-be) was repeatedly mentioned [54, 72, 78, 79, 81, 82]:

"I have a very important role with regards to the women, but I am also very in tune with the fact that I have a professional duty to protect the baby and 9 times out of 10 babies are not removed unless there is a good reason to do it and I have to keep that there to be able to do my job." (Midwife, UK) [79]

"Even when I know that it is for the best reason, it’s still hard as there is still a woman with dreams." (Midwife, Australia) [81]

In some situations, the all-encompassing professional focus on the wellbeing of the foetus or baby, with less regard for the health concerns and needs of the mother(to-be), highlighted the dehumanisation of pregnant people, especially when using illicit substances [50, 74]:

“I think it might just be being pregnant in general but you don’t always get talked to. You’re almost talked as if you are a baby maker, like baby machine […]. It’s like, they almost like talk and look at your stomach, like when they are talking to you. It’s just like, you lose that sort of normal talking thing.” (Woman with substance use disorder, USA) [74]

Ill-equipped, un-supported and unsure

We found an array of factors that impacted HCPs’ behaviours, attitudes and expectations when caring for women with CP involvement. Their assessment and strategy on how to enter and maintain this relationship was based on their level of confidence and expertise and personal beliefs and biases [54, 57, 72, 78].

"I feel like [alcohol], it’s so harmful, right? Those babies that come out addicted to cocaine, methadone, whatever, they end up doing okay. The FAS [fetal alcohol syndrome] babies don’t do okay. I struggle with the moms that have been drinking throughout their pregnancy." (HCP, Canada) [54]

A critical requirement for delivering high-quality, evidence-based and personalised care, was access to robust supervision and support [75, 78, 79], especially in case of an unexpected poor outcome [78].

“Whenever some child dies, they go round looking for somebody to hang out to dry and introduce another set of tick boxes and it doesn’t change anything meaningfully." (General Practitioner, Scotland) [78]

Equally important was access to relevant training so HCPs felt equipped to provide high standard care in the context of safeguarding. HCPs reported this aspect of clinical practice was often lacking in their pre- and post-registration training and they were often asked to practice outside the scope of their professional role [49, 57, 59, 71, 72, 78, 92].

“There’s loads of specialist people that deal with people with learning disabilities, help me, please tell me where I’m supposed to go with it, ’cause I didn’t know… I tried, loads of times… But it just was falling on deaf ears… So it was really frustrating." (Midwife, UK) [75]

“I like to stay in my own lane. I can only talk to them [patients] about the recovery aspect, and then I point them to social work. As soon as they say DV [domestic violence], I’m like, “let’s bring the social worker in.” (Healthcare provider, USA) [72]

This was echoed by women, who pointed out the importance of adequate training of HCPs in order to receive personalised and compassionate care from them:

“I find a lot of them [nurses], you know, are not very sympathetic, they don’t want to help you…I’m finding they need to train their staff more to be more understanding of us not just as parents and mothers, but as human beings, you know, how to interact with us with any situation and be more helpful when we’re asking questions instead of judging us or looking at us weird." (Postnatal woman, Canada) [52]

Overall, the task of providing high quality healthcare while safeguarding both mother and baby was described as daunting, with little recognition by the wider organisation or healthcare system of the ‘burden of care’ this constituted [9, 72, 78, 79, 81, 82].

"None of us have got adequate resource to do the job we’re being asked to do, to provide adequate child protection and parenting support. I certainly don’t in a 10-minute appointment, when I’ve got to get a methadone script done at the same time." (General Practitioner, Scotland) [78]

“We’re under resourced with this [current policy]. In order to make something work, the state would have to put in enough money in order to actually support it." (HCP, USA) [61]

The person behind the ‘Red Flag’

Similar to HCPs, women’s considerations whether or not to access healthcare during pregnancy and the postnatal period depended on a range of factors that would influence their decision-making. Many women had previous adverse life experiences, including past experiences with CP agencies. Previous contact with CP agencies was in most cases documented as a ‘red flag’ on their medical record and immediately shaped a perception of them as a risk and trouble-maker, which in response made them feel apprehensive of healthcare and healthcare professionals, with little confidence in a positive outcome [50, 51, 53, 56, 58, 62, 63, 71, 78, 83, 84, 86, 89, 92].

"I was an instant red flag at any hospital in [large city]. It wasn’t even a matter of, ’Hey, prove yourself. Show us that you can do it,’ until after they apprehended her." (Woman with learning disabilities, Canada) [53]

“I didn’t know [what my reaction was]. I was more scared because I didn’t want [Child Protection Services] coming to take …the baby. I didn’t know if they were going to let me keep the baby or if they were going to take custody of the baby like they did with the other [kids]…” (Woman with substance use disorder, USA) [51]

In several studies, HCPs seemed aware that women with CP involvement often had experienced traumatic and difficult upbringings, and blame was not appropriate to foster positive healthcare relationships [61, 71, 81, 83, 92].

"A lot of our clients have, maybe, been brought up in care, been in very abusive relationships as a child and they didn’t actually have any idea of what was expected of a ’normal’ parent, they don’t know what mums and dads are meant to do." (Health Visitor, Scotland) [78]

"Their background exposes them to situations where they haven’t been able to make the right choices and places the baby at risk. But by separating another child from its family aren’t we are just creating an ongoing cycle of generational trauma?" (Midwife, Australia) [92]

Women wanted to be seen as more than a ‘red flag’, without fear or shame, but for who they truly were, with all their strengths and flaws. Instead, they had to navigate challenging power dynamics [15, 50, 52, 58, 61, 63, 69–71, 84, 85, 92].

My personal information, which the doctor had in front of her, included my educational details [Master of Science degree] and employment history, yet that didn’t appear to come into it. I could have talked with her on her own level but in her eyes I was just another pregnant woman with a problem." (Pregnant woman with drug addiction, Australia) [85]

"Even though I’m prescribed the medication and I’ve been sober and I’ve been doing everything right, it doesn’t matter. When I get [to the hospital] they can do whatever the hell they want. And I can’t say a damn thing about it because I’m a drug addict and I will always be a drug addict and no matter if I’m on Suboxone or not, to them it’s still a drug." (Pregnant woman with substance use disorder, USA) [71]

Shame and stigma were often internalised and would prevent women from fully disclosing how they were feeling, what they were going through or how they viewed themselves, including feelings of self-judgement and guilt [15, 51, 53, 55, 57, 63, 85, 92]. This in turn would affect whether they would enter the healthcare system and if so, how confident or fearful they were when interacting with HCPs.

"I never told the doctors that I had a disability. [I] felt ashamed. Felt embarrassed. Didn’t want to admit to myself -well, I knew but I was still trying to hide it from myself too, at the same time, and I didn’t want people looking at me different because I had a disability." (Woman with intellectual disability, Canada) [53]

A fractured multi-agency system: navigating the maze

Healthcare interactions and CP processes take place in multi-agency systems. Unfortunately, many studies reported that navigating this complex maze was challenging for both women and HCPs, without oversight of agencies involved or clear communication between them [9, 54, 72, 75, 79, 81, 82, 88, 89, 91].

"I felt like I was banging my head up against a brick wall, to try and find the help and support, the appropriate help and support for her." (Midwife, UK) [75]

"We’d been waiting for ages for this placement […] as soon as we got out it was like, oh my God, they (Child Protection Practitioners) haven’t even done anything yet. They weren’t communicating with us at all." (Postnatal woman, Australia) [88]

Both women and HCPs reported they were faced with unrealistic expectations, that set them up to fail. Several studies explicitly mentioned how women found attending a vast number of appointments particularly challenging, especially when they were already feeling vulnerable or overwhelmed [73, 76, 77, 93].

“I’ve gotta now go to the [methadone dispensation] clinic every single day with my baby and hope that whatever this person’s coughin’ to the left and to the right of me isn’t somethin’ like pneumonia. Why is it that I just had a baby three days ago and they were able to dispense me my medication in the hospital, but yet I come home from the hospital and you expect me to waddle my open body with my child in this car seat and carry it, no doubt?" (Postnatal woman with opioid use disorder, USA) [93]

HCPs echoed how they had witnessed the pressure on women to meet unrealistic expectations, with no guarantee on a positive outcome.

"The woman herself, she jumped through hoops during the pregnancy. Went to three or four different courses, the Triple P (Positive Parenting Program) and had some counselling. She worked with Community Services and she had a case worker. They still took the baby into care." (Midwife, Australia) [81]

Navigating these positions of power was further compromised by the impact of colonialism and racism and both women and HCPs reported how discrimination based on race, ethnicity and cultural background was perpetuated within the healthcare system [52, 53, 61, 63, 69, 71, 74, 83, 86, 92].

"My last piss test was positive for meth… So they tell me they want to support me with my drug use, but hell no, they are removing my baby from me…It is because I am Aboriginal you know…" (Pregnant woman attending a Drug and Alcohol service, Australia) [86]

“There’s so much stigma around drug use and I think it’s very situational and then there’s a lot of institutional racism that’s based around drug use. So, I think a doctor or healthcare provider in general is going to look at someone who is not white and more readily do a drug screen on them than someone who is white to do a drug screen. I think there is so many institutional factors regarding our society that it’s gonna bias people towards testing and reporting, and I think it’s extremely unfair. I think there’s a lot of things that we have to change from an institutional perspective to actually be fair to patients." (HCP, USA) [61]

Our interpretation of included studies resulted in a theoretical framework of three types of healthcare interaction for women with CP involvement: Relational care, Surveillance and Avoidance. In previous paragraphs we described the factors that would determine whether HCPs approached women with kindness, respect and compassion [9, 15, 54, 57, 60, 67, 68, 81, 82, 85, 89, 90] or with fear, stigma and judgement [9, 49, 51, 53, 55, 57–59, 61, 63, 66, 71, 76, 85]. Women knowingly entered the healthcare system, aware of the risk this might pose towards their parental rights yet motivated by the belief that engaging with healthcare professionals and compliance with hospital protocols (such as urine drug screening) would put them in the best stead to manage this risk [59, 60, 63, 65, 70, 78].

Relational care–Together, I can do this

Where women and HCPs engaged with trust and compassion, interactions were positively appraised, and ‘Relational Care’, our first type of healthcare interaction—would be facilitated.

“Weird, and like at first, I thought I was crazy. I thought something was wrong because I wasn’t used to it… . People being nice to me about it. Not even just being nice, like, "Oh, good for you." It’s like people just treating me just like a person, not like a drug addict, not a loser. It was really uncomfortable in the beginning, which is weird… . I just felt like it wasn’t me. I don’t know how to explain it, but like they were treating me like I wasn’t used to being treated, so I felt like I wasn’t myself, but I got used to it and I think I started to feel like, Okay. I deserve to be treated like a person. I deserve to be treated, you know, because I am doing the right thing. And it’s hard, but it’s good… . " (Postnatal woman using opiates or illicit substances, USA) [60]

As women gained trust in their HCPs, they became more forthcoming with disclosing the issues they were facing, and more receptive of support void of judgement and punishment. [15, 53, 54, 56, 57, 60, 63, 73, 74, 80–82, 85–87, 89, 92].

"She [midwife] was awesome. She turned off every computer in her office, she didn’t write anything down, she was like, ’Tell me anything you want to tell me, even if it’s about Children Aid, just let it loose,’ you know? And I was able to talk to her and I didn’t feel like she was writing anything down at the time. So I didn’t have to stress that, ’Oh, no! What is she writing?’ kind of thing. So it kind of made me feel more at ease, to know that she was actually sitting there, listening to me." (Postnatal woman, Canada) [52]

Continuity of care provider was mentioned in several studies as a crucial element to build this reciprocal relationship of trust [49, 72, 75, 80–83, 85, 89–91].

“I get peace of mind having my appointments so close together, and I only see the one midwife, so I’m not explaining everything over and over again.” (Woman, referred to Social Work Services in pregnancy, Australia) [89]

“What works is the ability to meet them [patients] early in the pregnancy before they start doing more regular visits so that you’ve established a rapport. In order to provide I think adequate support for these women, is for them to trust you and get that rapport going which means giving them time in an area when they’re on their own, so as I said before, not with the partner or the children" (Midwife, Australia) [83]

Conversely, lack of continuity of carer and fragmented care was seen as an obstacle to achieve the consistency required to underpin any relationship of trust with HCPs.

"We just got thrown everywhere, alcohol and drug services, different midwives, doctors and social workers. Seeing somebody different every time you went made it harder and confusing. We had to keep telling our story over and over, so that was quite frustrating, as was dealing with the different people’s attitudes." (Postnatal woman, Australia) [92]

The impact of a trusting relationship with HCPs and compassionate and respectful care was profound, and instilled or reinforced a belief in oneself as a ‘mother’, which many women had not experienced before [15, 53, 57, 60, 63, 67, 68, 73, 75, 92].

"I think she thinks I’m a great mother, and a strong woman for doing what I’ve done. Partly because she has told me that I’m doing great, staying in the program. But, she just seems proud, you know what I mean?… Of what I was when I came in, and what I have accomplished now." (Postnatal woman, USA) [60]

"I saw her [Child and Family Health Nurse] for years… she got it into my head, you’re a mum; it’s no different being on methadone. She dealt more with my problems than my baby’s and saying, ’You’re a mother, you’re doing a great job’. It’s just that reinforcement, it can just be those words that really help you.” (Postnatal woman under care of opioid treatment clinic, Australia) [15]

Surveillance–box-ticking and dip-sticking

In contrast, where women entered healthcare with fear of potential repercussions, this was often mirrored by professionals’ fear. In these circumstances stigma and judgement could find fertile soil.

"The women come in waiting to be judged. They assume from the get-go that we are judging them for their addiction… I think they are a little shy, or even afraid of, interacting with health care professionals because of the fear of judgment." (Woman with substance use disorder, USA) [71]

Consequently, interactions were negatively appraised and healthcare encounters were reduced to ‘surveillance’ [15, 49, 52, 55, 56, 60, 62, 65, 69, 77, 78, 85, 86]. This was characterised by a reciprocal pattern of ‘compliance’, whereby both women [55, 57, 63, 65, 67–69, 71, 76, 77, 85, 88, 93] and HCPs [9, 57, 75, 79, 81, 82, 92] felt forced to follow outlined processes, resulting in a lack of shared decision-making and opportunity to disclose concerns [55, 78].

"This week I’m supposed to provide three clean urines and they’ll leave me alone but I haven’t […] so I will be lying to them and telling them I have to go somewhere. I know at the moment, the way I am, if Human Services did come today, and I haven’t done my urines, he will be taken off me […] I need to go into detox but I don’t want to tell them because I don’t want them to take him away […] No, I don’t trust them." (Postnatal woman attending Drug and Alcohol Service, Australia) [88]

"We do an awful lot of box ticking… . but actually how much impact is that having on the outcome of that child, is it still hell on wheels when the child goes home? (Health Visitor, Scotland) [78]

Women were facing unrealistic expectations [63, 69, 76–78, 81, 82, 85, 91], and lack of clear communication and clarity about processes led to further relationship breakdowns. Several studies reported how women felt they were treated differently compared to other women, and as a result felt their identify as a ‘mother’ was challenged or even denied [15, 55, 57, 59, 60, 69, 71, 83, 85, 87].

You just knew that you were not going to be treated equally and like other pregnant women and accepted for who you were. I mean after all I was at the clinic because of drug problems, and that was never forgotten [by the staff]." (Pregnant woman, Australia) [85]

"Just because I had her on methadone, like I must be a bad mother, and like don’t take any notice of me; like I don’t want the best for my child, how could I possibly love her on methadone?!" (Woman under care of an opioid treatment clinic, Australia) [15]

HCPs equally felt pressure to comply with system expectations and felt at times deeply uncomfortable with their involvement in CP processes. This was particularly the case when they were asked to step outside their scope of practice, when boundaries around professional roles were blurred or when HCPs felt complicit in secrecy around the pending removal [13, 72, 75, 78, 79, 81, 82].

"I was told by the social worker not to let [name of patient] know that they were planning to remove her baby that morning, I didn’t like being involved in that at all. I did not disagree with the reasoning as to why the baby was being removed, just the lying about it to the woman. I told them I would play no part in it but in the end I did, because I had no choice." (Midwife, UK) [9]

"And I think that once the baby is born, I feel strongly, I feel that it is not my role to tell the client about her baby not being with her, I don’t think that’s my role, but I don’t have any qualms in being the one to have to take the baby from her, as long as she knows beforehand that this is what’s happening." (Midwife, UK) [79]

HCPs reported being deeply uncomfortable when ‘committing’ this ‘professional betrayal’, i.e. when they were knowingly untransparent or deceitful about their actions, to the detriment of the CP outcome for the women in their care.

“I get it but still it’s very tough. You feel really deceptive not telling them… it feels wrong, I’m lying and not being truthful. My role is to advocate for the woman and when I’m withholding information it goes against my clinical practise. Concealing it gives the woman a false sense of security and immediately you have a breakdown in trust with them." (Midwife, Australia) [92]

Women were left devastated and disillusioned and, in some cases, disengaged with healthcare as a result [15, 55, 60, 62, 63, 70, 87].

Avoidance–Staying on top by going under the radar

While some women disengaged with healthcare after experiencing ‘professional betrayal’, others avoided healthcare altogether from the start, as it did not feel safe to enter these healthcare relationships in the first place. Both situations led to our third type of healthcare interaction, i.e ‘Avoidance’, through which women managed the risk of an unfavourable CP outcome by steering away from HCPs and the healthcare system as a whole [15, 51, 55, 60, 62, 63, 70, 87].

"If you have another [drug-exposed] child within a three-year period, even if you’re staying clean and sober, your child will be taken from you, and can be automatically be placed for adoption…[it is a] state policy. I wanted to come here [to the treatment program] and there wasn’t an opening… I didn’t go to my doctor at that time [in pregnancy] because of my name being on that list…I was really scared of that…that’s what kept me from going to prenatal care." (Pregnant woman in residential treatment for alcohol or drugs dependency, USA) [62]

"You don’t want to sit there and say I’m a drug addict, I’m about to have a baby please take it off me. You know, that’s your fear. So, I didn’t access anything (antenatal and treatment) at all. I didn’t seek any medical assistance until the seventh month, out of fear" (Woman with substance use during pregnancy, Australia) [87]