Development of the ESNA interview: An instrument to assess suffering in children and adolescents with serious illnesses and palliative needs

Abstract

Introduction: There is a lack of specific instruments to assess the suffering of children and adolescents with palliative needs. Objective: Describe the process of designing and creating the instrument for the Assessment of Suffering in Children and Adolescents (ESNA) with palliative needs. Method: 1) Literature review; 2) Establish theoretical framework; 3) Define the criteria of the instrument; 4) Establish themes related to suffering; 5) Validation of content by experts; 6) Validity of facie by patients; and 7) Pilot test. Results: 1) Of 750 articles, 161 are evaluated and 51 are included; 2) the theoretical framework incorporates the Kriokorian Integrative Model of Suffering, and the Brofenbrenner Ecological Model of Coping with Stress; 3) the criteria prioritize brevity, clear language and relevant questions; 4) relevant themes established with 18 adolescents: experience of the disease, information management, emotional impact, relationship with others and the impact on others; 5) 14 professionals carry out expert judgment of the preliminary version; 6) 8 patients made an apparent assessment of content; and 7) Pilot test and qualitative analysis with 8 patients. The final ESNA instrument is hetero-administered, with 42 questions (26 are exploratory and 16 quantitative items). Explore: Experience of Illness; Information management; Hope and expectations; Emotional Regulation; Impact on others; and relational aspects. Conclusions: The ESNA instrument seems to be an appropriate tool for the identification of suffering in children and adolescents with palliative needs, pending the evaluation of its psychometric properties.