A coalition of parents of DHH children reframing involvement: From lived experience to global policy, research and practice

Initiated by the Global Coalition of Parents of Deaf and Hard of Hearing Children, this paper reports the findings from a parent-led workshop exploring parents’ experiences of involvement in policy, practice and research and the value of various typologies of knowledge derived from the lived experience of parents of deaf and hard of hearing children. Utilising a participatory research methodology at all stages of the research process, including the interpretation and presentation of the data in this publication, the findings demonstrate the preferred conditions to support full parental involvement, whether in terms of consultation, contribution, collaboration or control, and the consequences of failing to meet these. The significance of the collective in the recognition of parental forms and characteristics of knowledge is evidenced in terms of reflexive agency and parental leadership. Both the process of carrying out this research and its results will form the next stage of GPODHH’s work in producing guidelines and best practice for parental involvement for researchers, practitioners and policy-makers alike.