Title: Evaluating Models of care, best practice and care pathways for women who are dependent on drugs and their infants, from preconception to 18 months postnatal
Funder: Department of Health and Social Care

Abstract: WHY DO WE NEED THIS STUDY? _x000D_ _x000D_ Pregnant women and mothers who use drugs often have complex needs linked to past abuse, mental health problems, poor physical health, drug-related violence and crime, exclusion, homelessness and poverty. Babies born to mothers who use drugs sometimes require treatment for drug withdrawal symptoms after they are born, experience problems with their early health and development, and are more likely to be taken into care within the first two years of life. Although there are various guidelines on the care of pregnant women and mothers who use drugs, and policies which encourage health and social care services to work together to support women, we know very little about the sorts of services that are available in the UK, whether these services meet the needs of women and infants, whether they are acceptable to women, and whether they lead to better or worse outcomes for families. This study will try to answer these questions through a detailed study of women’s experiences of health and social care from early pregnancy to two years after the baby is born. _x000D_ _x000D_ WHAT WILL THE STUDY INVOLVE? _x000D_ _x000D_ 1.An ‘expert advisory group’ made up of services users and professionals will be set up to work with the research team throughout the project - providing information, advice and feedback on all aspects of the research. _x000D_ 2. A review of books, reports and articles on ways of providing care for pregnant women and two years after a baby is born will be carried out to see what works, why, for whom, and under what circumstances. We will then examine best practice by reviewing documents for professionals (clinical guidelines, treatment protocols and good practice guidance). We will use these two reviews to decide what kind of services, interventions and approaches to care are best suited to this group of mothers and infants, and to improve outcomes for mum, baby and the family as a whole. _x000D_ 3.We will explore women’s experiences of care, and their care journey, from pregnancy to two years after the birth. If COVID restrictions continue, the study will take place remotely in interviews and conversations with women by mobile phone calls, texts and video calls with women to hear about their experiences of care. We will also interview staff (midwives, doctors, substance use workers, social workers), managers and commissioners. This will be carried out in four areas (two in Scotland, two in England) that have different ways of providing care, cultures, types of drug use, and health and social care policies. We will recruit 40 women at different stages of care and work with them over an 18- month period.. _x000D_ _x000D_ HOW WILL THE STUDY BENEFIT WOMEN, INFANTS, FAMILIES AND SOCIETY? _x000D_ The study will try to establish the best way of providing care for women who use drugs, from pregnancy to eighteen months after the birth of their baby, which meets the needs of women and achieves the best outcomes for children, families and society as a whole. Our study is important for several policies in the UK: Improving the way care is provided to pregnant women and mothers; Improving the health and development of children affected by parental substance use and other negative experiences; changing the way health and social care is provided to reduce inequalities, and: Involving patients and the public in redesigning services. More information can be found at https://www.kcl.ac.uk/research/the-stepping-stones-study

Lay abstract: Pregnant women and mothers who use drugs often have complex health and social needs related to histories of abuse, mental health problems, poor physical health, drug-related violence and crime, social exclusion, homelessness, and poverty. Infants born to mothers who use drugs can require treatment for drug withdrawal symptoms after they are born, experience problems with their early health and development, and are more likely to be taken into care within the first two years of birth. Despite UK guidelines on the care of pregnant women and mothers who use drugs, and policies which encourage health and social care services to work together to support women, there is variation in the services that are available and little evidence as to whether they meet the needs of women and infants, are acceptable to women, or lead to better or worse outcomes for families. _x000D_ This study will seek evidence of 1) best practice models for coordinated and integrated/multidisciplinary care to improve the wellbeing of mothers and babies and that have the potential to interrupt the transmission of adversity across generations and 2) women’s views and experiences of different models of care and how services could be improved. _x000D_ The research will:_x000D_ • Establish an Expert Advisory and Co-production Group of stake holders, service users and health and social care practitioners to guide the research and the translation of research findings._x000D_ • Systematically review international clinical and best practice guidelines and research evidence of integrated models of perinatal care for women with Substance Use Disorders and their babies. _x000D_ • Conduct a Qualitative Longitudinal multisite study in Scotland and England that tracks the perinatal care pathways, trajectories, and experiences of 40 women with Substance Use Disorder. Qualitative data will be collected via 5 serial, in-depth interviews with each study participant at 4/5 months intervals from early pregnancy through to 18 months postnatally. Women will be invited to make drawings of Timelines of significant life events and to keep audio/video diaries. _x000D_ • Conduct focus group and individual interviews with health and social care practitioners, managers and policy makers to verify and test a set of archetypal care journeys derived from analysis of women’s Timeline diagrams and accompanying narratives. _x000D_ Data collection and analysis will run concurrently. Timelines, interview data and field notes will be thematically coded to map out women’s relationships to services in order to build archetypal ‘journey maps’ to be presented as case studies for discussion at professional service focus groups and stake holder interviews. In turn, information and interpretation from the focus group will guide recommendations for models of care, intervention and best practice. _x000D_ The study will:_x000D_ • Identify and make recommendations for an optimised service model for woman, child and family-centred care from preconception and the first 18 months after birth. _x000D_ • Guidance will be provided for maternity and social care services. Findings will be co-produced in a range of media for service users and their families and evidence briefings will be developed for policy makers and commissioners.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;REPRODUCTIVE HEALTH AND CHILDBIRTH