Title: Utilising linked administrative datasets to explore the developmental pathways of children born to women who use opioids in pregnancy
Funder: Economic and Social Research Council

Abstract: The overall objective of the proposed research is to use administrative data (e.g. data collected by schools, social workers, Health Visitors and hospitals) to investigate the long-term health and developmental outcomes of children born in 2007 to 2017 in Scotland to women who have opioid-use recorded during pregnancy (e.g. methadone, buprenorphine, heroin), compared with two matched control samples. More specifically, the research has the following aims: Aim 1: To examine the reporting and quality of data recorded by social workers and medical practitioners involved in the care of women who use opioids in pregnancy (WOP) and their children - To examine the recording of data on WOP using in-depth qualitative interviews with social workers, midwives, nurses, doctors, data analysts; - To investigate gaps in data collection as well as data recording, quality, and reliability; - To inform the routine data elements of the study through providing insight into data quality and reliability, and to improve the quality of data recorded on these families through knowledge exchange with those designing and using these systems. Aim 2: To explore the health and developmental outcomes of children born to WOP - Building on feasibility study data (exploring neonatal and very early health outcomes for this group) to explore longer term health and developmental outcomes, e.g. neurodevelopmental disorders, chronic childhood illness, and accidents and injuries, using a range of routine education and health-based data sources, up to the age of ten; - To develop two matched control groups (one of children not exposed to opioids during pregnancy, and another of children born to women who use opioids for pain relief during pregnancy), matched on age of mother, health board, parity and deprivation level, to explore both exposure and environmental differences associated with health and developmental outcomes; - To explore the possibility of a further sibling control group (to control for maternal characteristics); - To investigate health and developmental profiles of children born to WOP, and determine which factors are associated with better or worse outcomes (e.g. polydrug use, gestation, area deprivation, age of mother, engagement with antenatal care). Aim 3: To investigate the experiences and impact of different patterns of care placements of children born to WOP - To examine the patterns of care placements experienced by these children using routinely collected social work data, e.g. exploring different types of care (from having 'Looked After' status whilst being supervised at home, to permanent removal of the child), number and frequency of placements, age of the child in relation to placement changes; - To investigate the risk factors (e.g. different types of drug use, deprivation, co-morbidities) associated with children experiencing different patterns of care, using linked social work and health data; - To explore the longer term health, developmental and educational outcomes for children experiencing different patterns of care in the sub-sample of children involved with social work. Aim 4: Develop my skills as an independent researcher - Master methodological and statistical techniques used in analysing longitudinal, routine data, e.g. Structural Equation Modelling; - Receive training on data visualisation techniques to improve my ability to communicate complex findings graphically with lay audiences; - Improve my ability to actively engage stakeholders in research and inform society about the results (e.g. through the Drugs Research Network Scotland events, third sector organisations, and blogging). - Forge connections with relevant professionals and organizations who may be able to apply findings in a practical setting (e.g. social work, government). - Take courses on improving staff management at the University of Edinburgh and apply this knowledge to/gain experience from, managing two research staff.

Lay abstract: Why do we need this study? Internationally, the rising use of opioid drugs has been described as a crisis. In Scotland, around 500 children a year are born to women who use opioid drugs, for example, heroin and methadone. The little we do know about these children is that they are likely to have poorer health in the first few years of life. We also know that they are more likely to be disadvantaged in other ways, e.g. living in poverty and in unstable housing. The research which has been conducted tends to have collected data on small numbers of children for a limited period of time. This is because these families often have pretty chaotic lives, and may move around a lot, making it difficult for researchers to keep in contact and return to interview them over time. This has led to a lack of information about what happens to these children in the longer term, and where they might need additional support. We also don't know much about the impact of differences in how these children are treated when they are born, and what makes some of these children have better health and development than others. What will the study involve? This study has three stages to it. Firstly we will speak to a range of people who work with women who use drugs about the way that they record data on these families, e.g. midwives, health visitors, nurses, doctors and social workers. We want to find out from them why they record data in certain ways, whether any data is missing or incomplete, and how reliable data are. This information will be used to inform the main study, which will use data recorded in hospital records, birth records, and school records, for example. In Scotland, everyone has a unique health ID number, which allows their data to be linked together. The second stage of the study will bring together data from health, education and social work, to allow us to compare what happens to different groups of children. These groups will contain children who had a mother who used opioids such as methadone in pregnancy because they are addicted to illegal drugs, such as heroin, as well as a group of children whose mother used opioids in pregnancy as chronic pain relief, and children who are similarly disadvantaged, for example living in poverty, but did not have a mother who used opioids in pregnancy. At this stage, we will look at different measures of health, e.g. whether children are obese/overweight, have been admitted to hospital for accidents and injuries, or have conditions such as asthma. We will try to work out the differences in these outcomes between the different groups of children, and what other risks (such as being born very early, or having a mother who smoked during pregnancy) are associated with these outcomes. The third stage of this study will look at the social work data on children born to mothers who used opioids in pregnancy. Many of these children will spend time living away from home, either with other family members or with foster carers. We will look at patterns of movement between different carers and what factors make a child more at risk of having different patterns of care away from home. We will then look at whether being cared for away from home leads to different health and developmental outcomes, compared with children who did not live away from home. Who will benefit? Our study findings will help a range of people and agencies in different ways. It will benefit women who use drugs and their children because it will help to show how practices and policies might better meet their needs. It will benefit society more widely as it will provide a better understanding of the everyday lives of parents and their families. It will also benefit professionals, services and policymakers by offering new understandings about what these families need to support them to give their children the best start in life. It will also advise on how we could collect better data on these families to improve services.

Research activity codes: 2.3 PSYCHOLOGICAL, SOCIAL AND ECONOMIC FACTORS;2.5 RESEARCH DESIGN AND METHODOLOGIES (AETIOLOGY)
Health categories: GENERIC HEALTH RELEVANCE