Purpose This paper reports research findings on the experiences of parents/carers of children with special education needs and disabilities who present violent and challenging behaviour. More specifically, the purpose of this paper is to explore how parents/carers report how their support needs are met by social care services. Design/methodology/approach The research is an empirical study which considers the challenging side of parenting children with additional needs. Data were gathered through a national online social media focus group and thematically analysed to identify emerging themes from an overlooked community. The study applied a participatory approach, with researchers and participants collaborating in designing and producing the research. Findings Participants reported a multitude of adversities and they experience difficulties in accessing support from professionals. The parents and carers expressed a continued desire to care for their children, often during much adversity and in receipt of little recognition or support from external agencies. An emerging theme was that they are often not assessed in their own right by agencies who focus on safeguarding. Research limitations/implications In this online participatory study, participants were self-selecting and the research relied on self-report during online discussions. Originality/value This study is original in applying an innovative research methodology using online focus groups with an under researched community. This online focus group generated real time data and offered participants the opportunity to share information in their own environments. The themes emerging from this research have implications for policy and practice for an under reported adult community who experience increasing vulnerabilities.

SummaryChildren and adults with neurodevelopmental disorders make up an estimated 10% of the population. Addressing health inequalities and poorer life outcomes is essential to deliver better quality care. Two parent-carers working in national roles in England suggest ways to increase understanding and work together in coproduction to achieve this.