Scoping longitudinal qualitative studies with seldom-heard families

Birth cohort studies make a unique contribution to understanding the origins and consequences of inequalities over the life course, but they encounter persistent challenges in recruiting and maintaining the engagement of families that are marginalised, mobile and stigmatised. These families are 'seldom heard' within cohort studies - but they are not necessarily seldom researched. Rather, they tend only to be studied in research focused on 'problems' or when evaluating services designed to make change in their lives. As a result, their voices are often absent from mainstream social science knowledge and 'evidence' used in policy making.

The planned research addresses this critical challenge through a one-year scoping study, bringing together a team (University of Sussex, Research in Practice, Family Rights Group, and the Network of International Women) with the right mix of skills, networks and expertise for such a complex task. We will establish how to conduct in-depth long-term research with families from 'seldom heard' communities, creating guidance and resources to complement the ongoing development of a new longitudinal birth cohort (the Early Life Cohort Feasibility Study).

We will focus on two 'seldom heard' groups:
(a) families with statutory child welfare or targeted non-statutory involvement (including families with Child in Need or Child Protection status and those in receipt of targeted non-statutory family support) as well as those who would be eligible for statutory support if classified differently (families with informal kinship care arrangements);
(b) families with refugee, asylum seeking or insecure migrant status (including families who are undocumented migrants or have pending or refused asylum claims, as well as refugees with status established under resettlement or community sponsorship schemes).

Together, these groups illuminate the challenges of conducting in-depth long-term research with seldom-heard families with young children. Experiences within each group may be very varied, but they are families whose lives are shaped by complex encounters with formal and informal child welfare and asylum systems, and so can help us learn how intersections of state and family can mitigate or exacerbate risk in children's lives over time.

Seldom-heard families are often dealing with complex difficulties, and might not have the stability, interest or capacity to make time for research, or to maintain involvement over time. Our challenge is to understand why they might want to take part, and what could enable their continued involvement? A key function of cohort studies is to create datasets that can be stored securely in an archive, to be used by researchers over many years to come - but this raises distinct ethics questions when families may be subject to legal processes such as child welfare investigations and asylum claims, with implications for expectations and assurances of confidentiality.

The study has three core components:
(i) Knowledge synthesis, reviewing research and consulting experts to bring together best practice and learning in relevant fields.
(ii) Establishing strategies for identifying and engaging families, taking account of variations across different local areas, and the involvement of state and voluntary agencies.
(iii) Trying out methods for research with families, and exploring with them what it means to create data that researchers would store, share and re-use.

Family Rights Group and the Network of International Women will convene expert panels involving parents/carers of families in the seldom heard groups, meeting regularly over the year, so we can consult them and create shared learning. A final report will identify methodological, ethical and practical challenges and offer solutions to these, providing guidance and resources for the design of future in-depth long-term research with seldom-heard families, which would run alongside the new birth cohort.