Perder um filho em idade pediátrica - estudo qualitativo do apoio ao luto parental

Abstract

Aims: The loss of a child of pediatric age is one of the most painful experiences the human being can endure and parental bereavement is an intense and dynamic process that needs monitoring and support. Thus, we aim to identify the needs to be met in the support provided by health professionals and the Centro Hospitalar Universitário de São João (CHUSJ) to parents that experienced the loss of a child of pediatric age due to an oncologic disease and outline recommendations to improve that support. Methods: Qualitative study based on semi-structured interviews with parents who lost a child of pediatric age due to an oncologic disease, followed at the Pediatric Oncology Service (SPO) of CHUSJ. After transcription of the interviews, the data were analysed qualitatively using the software ATLAS.ti. Results: Collected data confirm the recognized impact that an oncologic disease and the loss of a child has on a parent's personal, family, social and professional life. Strengths were identified in the support provided at an emotional, instrumental and informational level, especially throughout the period of illness and at the end of life (anticipatory grief). The main aspects to be improved by the team of health professionals and the hospital relate to the communication of bad news, articulation with other health units (e.g.: primary health care) or social services and the provision of psychological support. The need to reinforce bereavement support after the child's death stands out. Conclusion: As is done in several countries, it is pertinent to invest in pediatric palliative care and in the structuration of formal parental bereavement support programs. That being said, we consider it important to study this reality more deeply at a national level in order to better establish the points to be reinforced in the support provided to those who lose a child.