The qualitative study on the experience and perception of healthcare professionals in pediatric palliative care

The qualitative study on the experience and perception of healthcare professionals in pediatric palliative care

Salvaggio E

Palliative Medicine

2018

human; child; male; palliative therapy; diagnosis; death; hospice; home care; major clinical study; conference abstract; Ireland; quality of life; awareness; interview; perception; qualitative research; grounded theory; pediatric nursing; constant comparative method; pediatric nurse

Introduction: In Italy there are approximately 12000 children affected by life-limiting illnesses, which require palliative care services. The national reality, however, confirms the lack of a proper palliative care services network to ensure relief continuity. Therefore, there is an increase for need to find and develop effective methodologies and services that grant adequate assistance and continuous care to children affected by terminal and incurable diseases. Sensitizing society and empowering the health care environment about this theme could be the first step to improve the life of children and families who are subject to this situation. Research aim: The aim of the study is to analyze healthcare professionals' experiences involved in pediatric palliative care to identify their difficulties during the assistance. Study design and methods: The study started from the review of national and international literature. The chosen methodology is supported by the production of open questions interviews from the article "Professional Carers' Experiences of Providing a Pediatric Palliative Care Service in Ireland," submitted to palliative healthcare professionals of home- services. The results of the interviews are analyzed by the constant comparative method developed in Glaser and Strauss's Grounded Theory methodology. Results and interpretation: Interviews demonstrate that healthcare professionals faced several difficulties in relationships with children and their families. These include parental acceptance of the terminal diagnosis of the child's illness, the choice of the place of care or death, the involvement and the awareness of the young patient in the disease or the feeling of vulnerability of both families and operators. The communication and mediation between the team, the child and his family are essential to the care process and its problems. The awareness of the peculiarity of the service and the will of the operators to continuously improve the service are necessary elements for growth. Conclusion: The results of the study have shown that there is the need to improve in technical and emotional support and in the constant training of operators to make as "normal" as possible the remaining time available to the child and his family. Keywords: Home care, palliative care, pediatric nursing care, hospice, pediatric nurses, quality of life, relationship with assisted persons.

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August 2018 List