Developing a longitudinal qualitative approach to studying seldom heard families

Our scoping review will focus on guidance for a study of families in which a child has a chromosomal learning disability and one of families in which a parent has experienced violence or abuse from a partner in the last year. These are important marginalised groups who present different methodological challenges. We will begin with a systematic scoping review of qualitative studies that have included families from these two seldom-heard groups.

This will provide us with a strong evidence base for our recommendations, and will guide the public engagement work we conduct with representatives of the two groups.

Families in which a child has a chromosomal learning disability can be identified at, or close to, birth and can therefore be studied from early infancy. It is common to exclude data regarding these children in quantitative analyses so, while recruitment may not be a major challenge, the opportunity to learn from these families is often compromised.

We will engage with parents and professionals to co-produce recommendations for studying this group. We anticipate that the recommendations will also apply to families of children with learning disabilities that are not chromosomal in origin but that these children are more likely to be identified in the preschool years or later. We will interview parents about inducements and barriers to participating in such research and will engage with organisations such as the Disabled Children's Partnership and Special Needs Jungle to explore their experiences, views and recommendations.

Beyond this, we will look forward to when the ELC is ready to collect data from children themselves and, to support this, we will work with parents and professionals such as speech and language therapists to make recommendations on how to include the voices of children with learning disabilities, some of whom may not have speaking or writing skills. By co-producing these recommendations early the ESRC will have time to develop strategies, some of which will require creative and time consuming approaches.

Adults and children who have experienced domestic abuse are underrepresented in population studies due to multiple vulnerabilities, including social and economic marginalisation. Recruitment of these families remains a methodological challenge for all researchers, and particularly for survey studies. A longitudinal qualitative approach allows for careful and sensitive recruitment strategies to be developed, factors affecting retention to be considered, and the experiences of these families to be heard via an approach that centres their needs.

Racially minoritised women and children constitute a particularly vulnerable population and are multiply marginalised in research, including in research about domestic violence. We will work with practitioners, survivors and third-sector researchers to develop recommendations for working with families who have experienced domestic violence. Working closely with adult survivors from different ethnic groups we will explore specific barriers to recruitment and retention, and develop recommendations for survivor-centered, culturally sensitive methods for understanding their experiences.

We will also work with practitioners within survivor organisations to understand these barriers and co-produce recommendations for best practice.

In close collaboration with professionals, we will also make recommendations for working with children and young people who have experienced domestic abuse. Children living with domestic violence are vulnerable in multiple ways, including truancy, poor physical health, withdrawal from peer groups and social activities.

Before sharing our recommendations with the ESRC and ELC-FS team we will run a workshop with each of the two seldom heard groups. This will be an opportunity to share and finesse our recommendations and individuals who would like to be involved but cannot attend will be invited to provide written feedback.