Abstract
Objective: To describe the experience of a family going through the palliative care decision-making for a child with Pompe disease. Method: Qualitative research, case study design, approved by Ethics Committee (CAAE: 58643816400005327), conducted between 2017/2018. The setting was the Pediatric Intensive Care Unit of a university hospital in Brazil. Participants were family members of children admitted to the Intensive Care Unit and referred for palliative care. Results: The case study relates the decision-making on palliative care for a child with Pompe disease. The parents, surrounded by the palliative care available for the situation, experience the existential reality of the decision-making process to adopt palliative care for their child, together with the multi-professional team. Conclusions: Understanding the concept of quality of life that each family develops when faced with the seriousness of their child's illness, when the possibilities of cure have been exhausted, is fundamental to the decision making process for adopting palliative care. It is essential to include the participation of the child's or adolescent's parents and other family members in the palliative care decision-making process, in order to give the family a voice, minimising their doubts and suffering, as well as offering shelter in a situation of extreme existential vulnerability.
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
More From: International Journal of Family & Community Medicine
Disclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.