A criança com doença crónica complexa no continuum de cuidados

: a visão da enfermagem especializada

Abstract

The current reality of child healthcare has been showing an exponential development parallel to technological advancements regarding health sciences, significantly increasing morbidity associated with non-communicable diseases in a pediatric age. Complex chronic conditions (CCC), which have a life-threatening and/or life-limiting focus of disease lasting for at least one year, often have a disabling and incurable nature which are a threat to the child's quality of life. Caring for these children and families involves recognizing the special health needs they present throughout the care continuum - from the hospital to the community. In this context, paediatric palliative care (PPC) is an integral, multidisciplinary, and coordinated strategy seen as a right for all these children and young people. Intervention in this population is a relevant area for the Clinical Nurse Specialist in Child and Paediatric Health Nursing (CNSCPHN)’ scope of action, with a high impact on direct care and organizational goals. This is an internship report aiming to analyze the development of competencies for the Master and CNSCPHN, through describing the theoretical and conceptual framework behind the interventions and the learning experiences conducted in clinical settings. To achieve such aim, a descriptive, exploratory, and critical-reflexive methodology was sought. Advanced practice nursing depends on theoretical, empirical, ethical, legal, and clinical domains, relying on the integration and application of theory and science-based knowledge. In this report, the theoretical approach of transitional care and the philosophy of Child and Family-Centered Care were used to support the development of CNSCPHN competencies, assuming its role as a leader practicing specialized nursing, facilitating mastery acquisition and the development of a fluid identity in children and families. These competencies were developed through three clinical internships, conducted in a Neonatal Intensive Care Unit, a Paediatric Intensive Care Unit, and a Pediatric Medical Ward, within which interventions were implemented using a project-based work methodology, aiming to reach its suitability to the situational diagnosis in each unit and to the need for the development of common and specific CNSCPHN competencies. Participation in an additional internship at a Pediatric Integrated Care Unit and the investment in continuous training and scientific dissemination also contributed to achieve such competencies. Intervention on children with CCC and their families is a mission for the CNSCPHN, who should use their privileged position to implement PPC, promoting a positive transitional process in this population. Future investment in developing continuous improvement projects in clinical practice, pedagogical initiatives in education, and research studies related to children with CCC is essential to improve their coverage by healthcare practices promoting their dignity.

Date of Award	18 Jun 2024
Original language	Portuguese
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Joana Romeiro (Supervisor)