FAMILY FUNCTIONING OF STRUCTURALLY DIVERSE FAMILIES IN THE FACE OF PALLIATIVE AND END-OF-LIFE CARE OF THEIR CHILDREN WITH CHRONIC DISEASES

• Grant number: 24/23592-5
• Support Opportunities: Scholarships in Brazil - Doctorate
• Start date: May 01, 2025
• End date: June 30, 2027
• Field of knowledge: Health Sciences - Nursing
• Principal Investigator: Lucila Castanheira Nascimento
• Grantee: Giovanna Cristina Machado Kayzuka
• Host Institution: Escola de Enfermagem de Ribeirão Preto (EERP). Universidade de São Paulo (USP). Ribeirão Preto , SP, Brazil

Abstract

Life-threatening or limiting chronic illnesses have become increasingly prevalent in childhood, requiring interventions that go beyond traditional clinical care. In this context, Pediatric Palliative Care (PPC) is crucial in promoting patients' and their families' physical, psychological, spiritual, and social well-being. However, the frequent association of PPC with end-of-life care reinforces stigmas and hinders its acceptance. Despite evidence regarding the functioning of nuclear families in this context, little is known about the dynamics of structurally diverse families. This study aims to analyze the family functioning of structurally diverse families experiencing palliative care for their children with chronic illnesses. It uses the Grounded Theory method and the conceptual framework of family functioning, as well as family systems theory and suffering theory as theoretical assumptions. The research will be conducted in two phases: 1) Development and validation of a photo-elicitation method, involving a literature review, validation with experts and family members, and pre-tests. 2) In-depth dyadic interviews guided by photo-elicitation, capturing the interactions and narratives of family members. The analysis will integrate the triangulation of theoretical frameworks to generate insights into complex family experiences and analyze factors influencing care. By exploring under-researched dimensions, the study seeks to provide support for the proposal of public policies and interventions that address the needs of structurally diverse families, thereby expanding the positive impact of PPC.