Women and drugs: health, hepatitis C, children and healthcare

Abstract

Introduction: Women with substance use disorder (SUD), who are also mothers with hepatitis C (HCV), often have traumatic and difficult lives and experience a disproportionate burden of disease and disadvantage as a consequence of their SUD. Additionally, they are likely to encounter numerous difficulties engaging with healthcare, including stigma and marginalisation from within healthcare. HCV is an example of a common chronic health problem among people who inject drugs that should be relatively easy to ‘cure’ but, without sufficient healthcare engagement, HCV can lead to serious health consequences for a mother with HCV, and her children through vertical transmission. Aim: To develop an in-depth understanding of how drug-using mothers with HCV, engage with and experience healthcare (in particular their healthcare around pregnancy, parenting and HCV), with the ultimate aim of identifying opportunities to improve the healthcare experience, effectiveness and outcomes of these women and their children. Methods: Chapter 1 to 5 in this thesis present linked investigations. These include a narrative literature review (chapter 1); a cohort study following pregnant women with SUD and HCV, and their children, from pregnancy to two years postpartum; two qualitative studies, utilising a grounded-theory approach, involving semi-structured interviews with i) mothers with SUD and HCV (chapter 3); and ii) healthcare providers (HCPs) (chapter 4); and a scoping review of the literature to map evidence on potential clinical indicators for substance use in pregnancy and parenting services (SUPPS-CI) for utilisation within a healthcare improvement framework for SUPPS. Results: Women with SUD who are also mothers with HCV, bear a disproportionate burden of physical and psychosocial harms associated with their substance use. These women are likely to experience pervasive ongoing stigma and marginalisation from within healthcare, often resulting in ‘damaging healthcare’ making them feel ‘not normal’, experience their pregnancies ‘without joy’ and be in constant fear of their child being ‘taken’ by child protection services (CPS). Further, healthcare avoidance and inadequate healthcare can result in potentially serious health outcomes, including the consequences of untreated Page 4 of 338 chronic HCV for both mother and child. Additionally, the HCPs that work with similar women are likely to experience stigmatisation and marginalisation in the workplace, and in the context of a disintegrated healthcare system they are at risk of stress, burnout and workplace trauma. A comprehensive set of potential Substance Use in Pregnancy and Parenting Services Clinical Indicators (SUPPS-CI) was identified by a scoping review of the literature and provides the first step in the development of a core set of SUPPS-CI integral to a SUPPS healthcare improvement framework, essential for the improvement of care for these women. Discussion: Women with SUD have traumatic and difficult lives and the HCPs that work with them are also at risk of trauma and burnout in the workplace. The healthcare provided for women with SUD and their children is characterised by pervasive and enduring stigma and marginalisation from within healthcare, and further compromised by a HCP workforce under stress in the context of a disintegrated healthcare system that is unable to ensure. SUPPS-CI provide a method of measuring and monitoring the effectiveness of healthcare and improving the healthcare experience and outcomes for mothers with SUD, their children, and the HCPs that work with them.