Interviewing families of children and adolescents in end-of-life care through photo-elicitation

• Grant number: 24/19250-1
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: May 01, 2025
• End date: April 30, 2026
• Field of knowledge: Health Sciences - Nursing
• Principal Investigator: Lucila Castanheira Nascimento
• Grantee: Poliane da Silva Santos
• Host Institution: Escola de Enfermagem de Ribeirão Preto (EERP). Universidade de São Paulo (USP). Ribeirão Preto , SP, Brazil

Abstract

The increase in severe chronic conditions within the pediatric population has intensified discussions on palliative care, shedding light on sensitive issues for families, especially regarding their perceptions of care and the terminal stages of their children's lives. There remains a knowledge gap about the impact of such care on the daily lives of structurally diverse families and how they confront the possibility of death and manage daily caregiving. Exploring these questions can aid healthcare professionals in providing more targeted support for this population's needs. However, the delicacy of the subject may make it challenging to establish close connections with these families, making it desirable to utilize resources that facilitate researchers' and professionals' engagement, such as the use of photography. Despite the increasing use of photo-elicitation in qualitative research, its application among families of terminally ill children and adolescents requires further investigation. This study aims to develop and validate a data collection method using photography (photo-elicitation) with families of children in pediatric palliative care. The development of photography-based conversation models involves four stages: literature review, interviews with family members, expert assessment, and pilot testing with the target population. Creating this conversation model with families of children with chronic conditions in end-of-life care could enhance and ease data collection in both clinical practice and qualitative research.