Experiencias de los padres con niños con cáncer en cuidados paliativos pediátricos: una metasíntesis

Abstract

Background and aim: Worldwide, childhood cancer is one of the leading causes of death during childhood. Although many childhood malignancies can be cured, a high percentage of these children will end up dying of cancer. Most children who die from cancer undergo a previous end-of-life stage, which will require pediatric palliative care (PPC). Globally, there is great heterogeneity in the provision and dispensation of PPC. It is thus important to know the experiences and preferences of these children and their families in order to guarantee excellent care throughout this stage of their lives. We planned to achieve the following aims: to describe the experiences and recommendations of parents with terminally ill children receiving PPC; to identify the aspects that favor or hinder the establishment of a therapeutic relationship between health care professionals and children and their families; to investigate the role of parents throughout this period, and to analyze the role of the healthcare professionals involved, especially the nurses. Material and methods: We undertook a qualitative metasynthesis of 16 scientific articles identified following a systematic review of the literature in the following databases: PubMed, Science Direct, and Web of Science. Results: A qualitative analysis of the primary sources was carried out by grouping the information into the following categories: 1) what the healthcare team can or should do; 2) family: a care giving and care demanding unit; 3) communication as a key part of the relationship; 4) fighting the disease through knowledge; 5) the child as the focus of care; and 6) death is only the beginning. Conclusions: This article brings to light the importance of establishing a trust relationship between the members of the PPC team and these children and their families. Maintaining an empathic attitude, involving the parents in their children’s care, and keeping an open, fluid communication between healthcare professionals and parents are essential to improve quality of care. In addition, it is necessary to provide all health professionals involved in the care of these children and their families with specialized training in PPC. There is a lack of studies being led or undertaken by nurses in this area, as well as a lack of attention to the role and responsibilities of these professionals during end-of-life care for these children and their families.