本研究では、３施設の小児集中治療室（以下PICU）において、状態が悪くなり死に向かう子どもの両親に対して、医療者が子どもに関する悪い情報を提供する場面とケア場面を観察し、その後、その観察データを基にした両親と医療者へのインタビューをおこなう予定だった。
しかし、データ収集の場が重症の子どもを治療するPICUであるため、他の病棟以上にcovid-19による影響が大きく、計画通りのデータを収集することが難しい状況となってしまった。協力施設は、状況が落ち着き次第、観察とインタビューを始める事を許可してくれていたが、コロナ感染の状況が改善せず、なかなかデータ収集再開の目途が立たなかった。そこで、６月からPICUで働く看護師を対象に、PICUで死に向かう子どもの両親への情報提供とターミナルケアに関するインタビュー調査を始め、13名からデータを収集することができた。
もちろん、このインタビューを行いながら、もとの計画が再開できる機会を待っていたが、目途の立たない状態が続いたため、11月からは、インタビューと並行し、昨年質問紙を配付した256名の両親を対象として、PICUでの情報提供の体験を現在どう感じているのかについての質問紙調査を行い、前回との違いを明らかにしようとした。現在、回収を続けながら集まった回答を集計中で、今後、看護師のインタビューの分析結果と合わせて論文として投稿予定である。
This year we planned to observe medical staff in the pediatric intensive care units (PICU) of three facilities as they provided bad news to parents of children who were dying, and the subsequent care that was provided. We were planning to then interview parents and the medical staff based on this observational data.
However, since the data collection sites are PICUs that treats severely ill children, the impact of Covid-19 made it particularly difficult to collect data as planned. The cooperating facilities said that they would allow us to start observations and interviews as soon as the situation settled down, but the situation with the corona virus did not improve and it was difficult to resume data collection.
Therefore, from June, we started conducting interviews with nurses working in the PICUs concerning terminal care and the provision of information to parents of children dying in PICUs, and we were able to collect data from 13 nurses.
Of course, while we were interviewing these nurses, we were waiting for the opportunity to resume the original plan. However, the situation remained unclear. Therefore, starting in November, in parallel with the interviews, we submitted a follow up questionnaire to the 256 parents whom we sent a questionnaire to in the previous year. The purpose was to find out how they felt about the information provided in the PICUs now and compare these responses with those from the previous survey. Currently, we are compiling what we have collected while continuing to receive responses, and we plan to submit our findings in a future paper that includes the results from the interviews with the nurses.
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