The authors report that the study was partially funded by WellChild but that the analysis was undertaken and the paper was written independently of any oversight from WellChild. The authors gained no financial benefit from undertaking the study.Not a nurse but more than a mother: The everyday geographies of mothering children
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 article reports on a study that analyzed the #notanurse_but parent-driven campaign videos. The purpose of the study was to consider the videos in terms of the range, content, context, perspectivity (motivation), and 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 analyzed by a minimum of 2 researchers. All but 2 of the 30 videos were filmed inside the home. A variety of filming techniques were used. Mothers were the main narrators in all but 1 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 than "normal families"; the affect varied among the researchers, ranging from strong to weaker emotional responses.
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No abstract
AimsThis paper reports on a project which analysed parentrecorded video diaries from a parent-driven campaign, #notanurse_but, supported by WellChild. The videos aimed to reveal family life and the challenges that parents face providing high level, ongoing clinical care for their son or daughter who has complex care needs.MethodsA team of four researchers (three nurses and one social scientist) analysed 30 videos from the WellChild Website, WellChild Facebook page, a dedicated #notanurse_but campaign Facebook page, YouTube and Twitter. An interpretive, inductive qualitative analytical approach was utilised. At least two researchers analysed each video.Analysis involved repeated viewing of the video and documenting descriptive and interpretive information on a data extraction template. Data included the filming and editing techniques used, actors and props, the key message of the video; the perspectivity (motivation) either specifically described or alluded to; and the overall affect/impact of the video. The videos ranged in length from eight seconds to more than nine minutes.ResultsThe content of the videos covered a range of activities, including: morning routine; night time routine; undertaking specific medical procedures; and administering medicines. Analysis revealed that videos have most impact when they demonstrate an emotional connexion between the main narrator (typically the parent/carer) and their child. We also found that, generally, videos published on Facebook had more views, ‘likes’ and interactions than those published on YouTube, suggesting that this is likely the most successful location for WellChild to publish future campaign videos. Although the use of a hashtag in the campaign title (#notanurse_but) is indicative of a Twitter campaign, we found that Twitter was the most under-utilised of all social media platforms, both by parents posting the videos and WellChild sharing the videos.ConclusionParent-produced videos reveal the everyday challenges faced and managed by parents of children with complex health care needs. The videos demonstrate the tensions between having to provide highly skilled health care interventions and sustaining the role of mother or father.Our paper best aligns with the following RCN theme:Transforming care for children and young people with continuing care needs and their families
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