When Doctors and Parents Don’t Agree: The story of Charlie Gard

Hammond-Browning, Natasha

doi:10.1007/s11673-017-9814-9

Cited by 8 publications

(4 citation statements)

References 1 publication

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“…Clinicians working in IMD are less obvious online. The reason for the absence of metabolic clinicians is unclear although the public response to cases such as that of Charlie Gard 7 and Alfie Evans may explain the low profile. However, a failure to engage does not prevent the ever pervasive presence of social media and it is important o consider what role it may have to play in IMD.…”

Section: Introductionmentioning

confidence: 99%

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Social media at metabolic meetings: who is tweeting what and for whom?

Nurse

2022

Preprint

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BACKGROUND: The social media site Twitter has been widely embraced in medical circles for its ability to connect individuals and support rapid information sharing. Critics say that the messages shared may not accurately reflect what was said and that sharing meeting content could devalue conferences themselves. It is unclear how it is used at SSIEM and what value it may bring. METHODS: Twitter's tweetdeck software was used to find all tweets containing the conference 'hashtag' #SSIEM2018. All tweets were reviewed to identify the author, see what had been shared and count replies, likes and retweets. Authors were grouped by professional background and tweet content was broken down by type of material shared and theme. RESULTS: 122 relevant tweets were sent during the fortnight at the beginning of September 2018, creating over 400,000 impressions. There were a further 73 replies with approximately 13 engagements (likes, replies or retweets) per tweet. 36 people wrote tweets (rate: 3.4 per person [1-33]). One quarter of the tweets shared poster content and over one third of tweets related to Phenylketonuria materials. 50 of the tweets were produced by just two accounts, both intended to provide information to patients and their families. DISCUSSION: Tweets where no hashtag was used cannot be identified and restrictions within Twitter prevent certain analyses on tweet data greater than 30 days old. However, Twitter uptake within metabolic medicine is significantly behind other specialities where conference tweets can exceed 20,000. Information shared is typically intended for patients rather than other health professionals; this suggests a different uptake to more mainstream specialities. Presenting teams should be aware that their work may be received directly by patients and families and consider how best to present their messages for all who may receive them.

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Section: Introductionmentioning

confidence: 99%

“…of Charlie Gard7 and Alfie Evans may explain the low profile. However, a failure to engage does not prevent the ever pervasive presence of social media and it is important o consider what role it may have to play in IMD.…”

mentioning

confidence: 96%

Social media at metabolic meetings: who is tweeting what and for whom?

Nurse

2022

Preprint

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“…In these cases, the conflict between families of seriously ill children and the medical profession was brought to the forefront 3–6. Of note, they have typified opposite ends of the treatment spectrum, with two cases related to treatment refusal,3 4 while treatment insistence exemplified the other two 5 6. Altogether, these cases highlight the changing landscape of conflict and the central role that the media (and social media in particular) can play in fuelling and intensifying conflict.…”

mentioning

confidence: 99%

“…In recent years, several high-profile court cases have generated headlines across the globe. In these cases, the conflict between families of seriously ill children and the medical profession was brought to the forefront 3–6. Of note, they have typified opposite ends of the treatment spectrum, with two cases related to treatment refusal,3 4 while treatment insistence exemplified the other two 5 6.…”

mentioning

confidence: 99%

‘Walking their walk’: reducing conflict between families of ill children and the medical profession

Gottardo

2019

Arch Dis Child

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In recent years, several high-profile court cases generated headlines across the globe. Notably, they brought conflict between families of seriously ill children and the medical profession to the forefront. These conflicts, especially when the courts become involved, are highly destructive to all parties concerned, as the focus inevitably shifts from the child to the conflict itself. Often, at the heart of conflict, is a lack of effective communication between a patient’s family and their health providers. In order to assist health workers in the prevention, recognition and management of conflict in paediatrics, a Conflict Management Framework (CMF) and a set of guidelines endorsed by the Royal College of Paediatrics and Child Health (RCPCH) have been developed. Here, I review recent high-profile court cases to underscore the changing landscape of conflict and the central role that the media (and social media in particular) can play in fuelling and intensifying conflicts. The CMF and RCPCH-endorsed guidelines are discussed in the context of my own experience utilising some of these, as well as implementing other strategies aimed at reducing conflict in a paediatric oncology and haematology unit.

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