Common health education needs of children and adolescents with chronic complex diseases and their families

Abstract

Maria D. Navarro Rubio, Jordi Cruz, Ana Bosque, Paula Canal, Arian Tarbal, Hernan Lew and Carles Blay

Introduction: Chronic complex diseases during childhood and adolescence are associated with morbidity and mortality, and present an emotional and social burden for patients and caregivers. Health education in self-care activities and patient empowerment are essential aspects in improving the quality of life of this population. Children and adolescents with chronic complex diseases, as well as their families, tend to present common health education needs related to disease management and patient’s empowerment.

Objective To identify the common health education needs of children and adolescents with chronic complex diseases and their families.

Materials and Methods Qualitative design study though two focus groups with 15 family members and patient representatives. Setting Sant Joan de Déu Children’s Hospital, Barcelona (Spain). Period of the study: From November 2021 to March 2022.

The Study was Carried out in Three Phases 1) Review of bibliographic and grey literature 2) Field work: design implementation, data collection and analysis 3) Development of recommendations.

Results Patients and families need to receive training and education on the patient’s disease and medical devices, as well as clear information at the beginning of the disease process. It is important to maintain the main caregiver’s good health status and well-being. The patient-provider relationship and patient’s relationship with friends and school are essential to achieve a good adaptation to the recovery process. Information on economic and social aids for families is necessary. The mixed format combining face-to-face and online sessions is the most preferable for patient and family health education.

Conclusions: It is important to develop basic content for all patients and family members about common health education needs, regardless of the specific pathology they present. This training must include caring for emotions, psychological support and well-being; as well as the main aids or resources available for patients and families, among other topics of interest.

PDF