Course:SOWK551/2021/Perinatal Substance Use: Disrupting Barriers to Care
Short Summary
An exploration of perinatal substance use and how the disruption of stigma may result in reduced barriers to safe, accessible, and equitable care.
Author: Sabine Bruyere
Date: April 6, 2023
Introduction
As the toxic drug poisoning crisis continues today, substance use and opioid use for perinatal populations in Canada has also increased (Barnett et al., 2021; Renbarger et al., 2022). The perinatal period is defined as the period of pregnancy and twelve months postpartum. In British Columbia, perinatal opioid use disorder (OUD) has tripled over the last twenty years (Piske et al., 2021; Barnett et al., 2021). This has important implications for health care social work practice, as the presence of stigma and barriers to care has disproportionate impacts on those in the perinatal period. For the purposes of this literature review, studies included primarily reflect the perspectives of those who identify as women, however further research on the perspectives of non-binary, trans, or Two-Spirit perinatal persons is needed.
Substance use may involve substances that are illicit or licit such as alcohol or tobacco and is affected by multiple intersecting factors (Forray & Foster, 2015; Gartner et al., 2018). The prevalence of substance use ranges within the perinatal population with estimates ranging from 5% to 20% (Gartner et al., 2018). In one Canadian study, prenatal opioid exposure was seen in 4.5% of hospital births in 2019 (Renbarger et al., 2022). A 16-fold increase in infants delivered to women with OUD was seen in Ontario from 2002 to 2014 (Barnett et al., 2021). With opioid exposure there may be varying impacts for mothers and infants such as risk of premature birth or withdrawal symptoms (Schmidt et al., 2019). Low birth weight or prematurity can contribute to the risk of infant mortality or other complications (Kramlich & Kronk, 2015). Other impacts including physical, socioemotional, or neurodevelopmental effects may be seen depending on the type of substance utilized and access to appropriate care and support (Barnett et al., 2021). Across North America, an increase in infants being born with acute opioid withdrawal or neonatal abstinence syndrome (NAS) has been observed (Faherty et al., 2019; Piske et al., 2021). The increase in NAS has also resulted in increased admissions to neonatal intensive care units (NICUs) (Marcellus & Poag, 2016; Faherty et al., 2019). It is important to note that prenatal care can reduce some of the risks of substance-related complications such as low birth weight or prematurity (Kramlich & Kronk, 2015).
Gathering the perspectives of pregnant women using substances and how care may be accessed or not is imperative. Women with substance use disorders (SUD) experience a variety of barriers, with those living in rural areas, experiencing poverty, exposure to violence, environmental pollution, or food insecurity facing additional challenges (Kramlich & Kronk, 2015; Piske et al., 2021). It was found that even when controlling for receiving treatment such pharmacological interventions (e.g., methadone, suboxone), and controlling for exposure to substances, the social determinants of health still impacted maternal and fetal outcomes (Kramlich & Kronk, 2015). In one systemic review of facilitators and barriers to care for mothers with SUD in Canada and the United States, it was discovered that, “Motherhood often interacted with relational (e.g., perceiving stigma vs. support from providers, family, friends, partners) and structural (e.g., time commitments, childcare) factors to both hinder and help engagement in treatment” (Barnett et al., 2021, p. 1). The consideration of both relational and structural factors is essential for social workers to consider in practice.
Stigma
Across the literature, stigma was identified as a primary factor resulting in significant barriers to safe and equitable perinatal care or substance use treatment (Benoit et al., 2014; Marcellus & Poag, 2016; Cockroft et al., 2019; Schmidt et al., 2019). Health-related stigma is defined as, “a sociocultural process in which groups are devalued, rejected, and excluded based on a socially discredited health condition” (Marcellus & Poag, 2016, p. 328). This may be seen in the labelling of perinatal women using substances as “bad mothers” and result in discrimination or unfair treatment (Schmidt et al., 2019). Stigma, discrimination, fear of child protection involvement are reasons why disclosing substance use during pregnancy is difficult, and why care may be sought out later in pregnancy (Piske et al., 2021). There are also disproportionate impacts on Indigenous and racialized women in Canada and a need to recognize the impacts of discrimination, racism, and colonial violence (Schmidt et al., 2019; Barnett et al., 2021). Women using opioids during the perinatal period have shared stories of feeling judgement, surveillance, fear, self-blame and having limited opportunities to discuss decision-making in their care (Schmidt et al., 2019). On the other side of this, participatory research has learned that the attitudes of health care providers, the nature of the collaborative relationship, and respect and empathy being offered is critical to the engagement in care (Kramlich & Kronk, 2015). With this approach also comes the necessity of disrupting and countering stigma and implicit biases that create barriers to equitable and compassionate care (Benoit et al., 2014; Schmidt et al., 2019; Renbarger et al., 2022). This also reflects a shift from only trauma awareness to incorporating trauma-informed practices (Renbarger et al., 2022). Four different key themes to address this are outlined below and may be applied to social work practice at multiple levels. These include painting the picture, walking with & holding space, and disrupting.
Painting the Picture
As social workers in health care, we paint many pictures and capture various perspectives and systems within. We translate medical jargon, illustrate care journeys, illuminate systemic gaps and barriers, and call attention to social injustices. In doing so, we can create more understanding, compassion, and empathy. In painting the picture of how we may disrupt stigma and barriers for perinatal women using substances, we need to centre their perspectives.
In several studies, perinatal women expressed fears with accessing care or treatment due to concerns around confidentiality and the judgement of providers (Cockroft et al., 2019; Barnett et al., 2021). One study noted participants were concerned with who had access to their electronic medical record and how it was being utilized (Cockroft et al., 2019). Limits to confidentiality is an area social workers can provide information to women on and is also part of a trauma-informed practice. In one study, participants emphasized the importance of using person-first, non-judgemental, and recovery-oriented language, while also recognizing substances as only one aspect of who they are as people (Schmidt et al., 2019). The use of language in interactions and clinical documentation is a necessary consideration to disrupt stigma (Benoit et al., 2014; Schmidt et al., 2019). For example, we can reflect on the value-laden term ‘abuse’ of substances versus ‘use’ of substances (Benoit et al., 2014). This simple shift makes a large difference and is person-centred. For perinatal populations, there may be an additional lens of morality, gendered, or an individualized framework applied at times. This was evidenced by a qualitative study of provider perspectives in an integrated care program in British Columbia and demonstrates the importance of critical reflexivity (Benoit et al., 2014). Maintaining awareness of the framing of perinatal substance use is important as it may be defined by, “A lack of substitute maternal care” (Benoit et al., 2014, p. 260). Recognizing the increased responsibilities placed on women who may be navigating other barriers such as housing, poverty, or interpersonal violence is crucial.
As social workers we can paint the picture of what a harm reduction approach to substance use may look like, the social inequities (Benoit et al., 2014), or different treatment approaches with perinatal populations. Harm reduction is defined as, “The full range of supports and strategies that help women reduce harm, support wellness and address determinants of health without requiring abstinence. The term is also used to refer to pharmacological treatments that support stabilization (E.g., methadone) and supervised consumption sites to facilitate safer use” (Schmidt et al., 2019, p. 7). Solely focusing on abstinence-based approaches may be more harmful and create additional barriers for women (Schmidt et al., 2019). In several studies, the inclusion of culturally relevant and mothering through recovery skill-based recovery programming was found to be valuable by women (Barnett et al., 2021). While exploring and applying harm reduction approaches, social workers should also consider the accessibility of care.
Several studies reviewed gathered perspectives of perinatal women using substances and noted that motherhood could be a “double-edged sword” as both a facilitator and barrier to care (Barnett et al., 2021). For example, some treatment programs are unable to accept women due to pregnancy and the complexity of care (Barnett et al., 2021). Other considerations included was if women had any other children, as the responsibility for obtaining and arranging childcare primarily fell to them. Ensuring women had childcare was important to facilitating access to perinatal care, mental health support, or substance use treatment whether it was day or residential treatment (Kenny et al., 2015; Barnett et al., 2021). Addressing practical aspects such as the time needed for appointments, transportation, and financial assistance to access programming was identified by women as being important (Cockroft et al., 2019; Barnett et al., 2021). Recognizing when women were navigating multiple systems with different requirements or expectations of them was also shared by women as critical for providers to be aware of (Schmidt et al., 2019). Some women identified that integrated and interdisciplinary treatment options worked better for them as they navigated competing demands and appointments (Barnett et al., 2021).
Child Welfare
Across multiple studies reviewed, one of the most significant overall fears and barriers to any perinatal care or treatment was the fear of child welfare involvement (Benoit et al., 2014; Kenny et al., 2015; Schmidt et al., 2019; Barnett et al., 2021; Tucker Edmonds, 2022). The fear of becoming known to providers and authorities is understandable and is intensified for racialized women or those living in poverty. Racialized and poor women using substances are more likely to be reported in comparison to White-identifying women and are also more likely to be tested for and asked about substances (Benoit et al., 2014). Mandatory reporting or punitive policies such as considering substance use during pregnancy as child abuse or neglect is associated with deterrence from accessing prenatal care (Faherty et al., 2019). In one study from the United States, the presence of punitive policies around perinatal substance use was correlated with an increase in NAS (Faherty et al., 2019). The loss of child custody is also profoundly traumatic with lasting impacts (Kenny et al., 2015). In one study that gathered perspectives of mothers using substances who lost custody, some referred to this loss as a ““collapse of the universe’’ or an ‘‘end of the world”” (Kenny et al., 2015, p. 1161). It was noted that the intense disenfranchised grief with custody loss typically does not evoke supportive responses and can leave women in highly vulnerable states (Kenny et al., 2015).
There have been recent shifts in approaches to child welfare, that focus on the impact of substances on parenting and caring for children (Schmidt et al., 2019). Substance use is not considered a Section 13 concern under the Child, Family, Community Service Act (CFCSA) (Province of BC, 1996). This is an important distinction for social workers and other health care providers to be aware of. This distinction must also be recognized in the context of colonial violence, harm, re-traumatization, poverty, and structural racism. In British Columbia for example, birth alerts ended in 2019 and disproportionately impacted Indigenous women (Schmidt et al., 2019; Morgan, 2021). Social workers need to acknowledge the very real and often justified fears in interacting with systems. In one article, a physician raises important questions of provider complicity in harm and punishing responses to perinatal women navigating systems built on structural racism (Tucker Edmonds, 2022). He questions in his article if he is a good apple on a rotten tree, in speaking to working within systems that have oppressed and harmed others (Tucker Edmonds, 2022). This an important ethical consideration for social workers, as we navigate our roles and various systems that have been complicit in harm as well.
If the involvement of child welfare or in British Columbia, the Ministry of Children and Family Development (MCFD) is indicated, and there is a duty to report under the CFSCA such as a concern for neglect, it is important to attempt to do this with families and be transparent and respectful (Province of BC, 1996). Social workers may also be able to support women and families in mediating requests for voluntary services or supports from MCFD.
Walking With & Holding Space
In several studies that included the perspectives of perinatal women using substances, they shared characteristics of care and providers that supported safe care and treatment. Participants identified that when they had providers who listened, allowed for their questions, and provided them choices in their care this was highly valuable (Renbarger et al., 2022; Schiff et al., 2022). When providers were understanding of setbacks in treatment efforts, recovery journeys, and affirming of maternal roles, this also contributed to the building of trust (Renbarger et al., 2022). Fear and anxiety about the impact of withdrawal symptoms on infants was expressed among participants with OUD in one qualitative study as they navigated what medication assisted treatment may mean (Schiff et al., 2022). Information about approaches such as Eat Sleep and Console (ESC) to comfort infants experiencing symptoms of NAS, be an important intervention to discuss with women (Grisham et al., 2019). Shared decision-making, incorporating women’s perspectives into plans, and providing information about what to expect for themselves and their infant is one way women’s autonomy and self-determination may be promoted (Renbarger et al., 2022; Schmidt et al., 2019; Schiff et al., 2022).
Connection and care coordination were identified by participants in Sheway programming, a harm reduction and integrated program in Vancouver, BC as important to their care (Gartner et al., 2018). The research literature also noted that social connection is an important consideration (Gartner et al., 2018). In a qualitative study, some women identified wanting the support of others such as partners or family but experiencing tensions when these persons may be engaged with substances (Barnett et al., 2021). Limited research on the role of partners and perinatal women’s substance use was recognized in the review of literature but is an important area to explore as family-centred approaches to substance use are incorporated into acute settings (Schmidt et al., 2019). Additionally, social workers may utilize a relational and trauma-informed tool titled RE-CLAIM that was developed by Dell (2005), when working with women using substances (Schmidt et al., 2019). It stands for recognition, empathy, communication, care, link to spirituality, acceptance/non-judgemental attitude, inspiration, and momentum (Schmidt et al., 2019). This skill-based tool may be helpful, in addition to working with women in a trauma-informed manner to identify their strengths and other sources of connection, care, and support that are important to them.
Disruption & the Role of Social Work
As mentioned earlier, some infants who may have been exposed to opiates during pregnancy experience NAS, that may require admission to the neonatal intensive care unit (NICU). As part of this literature review, it was important to reflect on the perspectives of providers and recognize where stigma may be present. The NICU is a highly specialized unit that provides intensive care to infants. NICU nurses work closely with families, including those who are using substances (Maguire et al., 2012). In a theory titled Dancing Around Families from Saltmarsh & Wilson (2017), they highlight the tensions of NICU nurses in framing an infant’s safety and protection needs, caring for the infant, and the infant belonging to the family. If NICU nurses appeared to be mistrusting of families, this would at times result in less contact of the family with the infant and have a snowball effect of raising additional concerns (Saltmarsh & Wilson, 2017). In another study, some parents of substance-exposed infants had positive relationships with NICU nurses, while others felt judgement, conflict, surveillance and would use avoidance strategies that would be interpreted by staff as not caring for the infant or using substances (Marcellus & Poag, 2016). In a qualitative study, NICU nurses were weighing the ethical principles of beneficence and non-maleficence, experiencing distress around withdrawal symptoms, and having fears around the complex needs of infants and parents possibly being unable to meet needs (Maguire et al., 2012). Social workers may be able to support their colleagues in the NICU with additional debriefing, information sharing, and discussion of their concerns.
As social workers, we need to carefully consider and reflect on where health inequities originate from. As part of this, we can work to disrupt stigma, recognize the harms associated (Marcellus & Poag, 2016), and create safety within our places of work. Safeguarding against discrimination and stigmatization has been outlined as a key principle from the World Health Organization (2014) in working with perinatal women using substances. One tool that may be used is called the ACTS script (Acknowledge Create Circumstance for Reflection-Teach Support, which was developed in response to concerns from women using substances about judgemental health care provider language and to address the moral distress of providers having these conversations (Marcellus & Poag, 2016). It is a structured communication tool focused on creating a safe space for discussion, critical reflection, learning, and supporting change (Schmidt et al., 2019). It may be a useful tool for social workers or other health professionals to address stigmatizing responses or attitudes from colleagues (Schmidt et al., 2019). With this tool, it supports important conversations and learning that are essential to continuing to disrupt stigma and barriers to care for perinatal women using substances.
Conclusion
Within this review, the perspectives of perinatal women using substances and their providers have been explored. With the disruption of stigma, consideration of structural factors, and relational approaches, this may result in reduced barriers to safe, equitable, accessible care.
References
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