Parent-driven campaign videos: an analysis of the motivation and affect of videos created by parents of children with complex healthcare needs

Caring for a child with complex health care needs places additional stress and time demands on parents. Parents often turn to their peers to share their experiences, gain support and lobby for change; increasingly this is done through social media. The WellChild #notanurse_but is a parent-driven campaign that states its aim is to “shine a light” on the care parents, who are not nurses, have to undertake for their child with complex health care needs and to raise decision-makers’ awareness of the gaps in service provision and support. This paper reports on a study that analysed the #notanurse_but parent-driven campaign videos. The purpose of the study was to consider the videos in terms of the range, content and context, the perspectivity (motivation), and the affect (sense of being there) in order to inform the future direction of the campaign. Analysis involved repeated viewing of a subset of 30 purposively selected videos and documenting our analysis on a specifically designed data extraction sheet. Each video was analysed by a minimum of two researchers. All but two of the thirty videos were filmed inside the home. A variety of filming techniques were used. Mothers were the main narrators in all but one set of videos. The sense of perspectivity was clearly linked to the campaign with the narration pressing home the reality, complexity and need for vigilance in caring for a child with complex health care needs. Different clinical tasks and routines undertaken as part of the child’s care were depicted. Videos also reported on a sense of feeling different to “normal families”; the affect varied amongst the researchers, ranging from strong to weaker emotional responses. The lives of families of children with complex needs are largely hidden from the eyes of healthcare professionals, policy makers and other stakeholders. The #notanurse_but campaign epitomises parent-driven advocacy, and whilst its focus is to illuminate the gaps in service provision and support, it also plays a role in raising awareness of wider issues such as the importance of a society that is fair to all its members.