The Values of Empowerment and Citizenship and the Experience of Children and Adolescents with a Chronic Disease

Abstract

In spite of becoming progressively common, chronic diseases are quite invisible in modern societies, as these silent diseases are relatively absent from public socio-political debates. As a consequence, social agents and institutions seem to reveal significant difficulties in coping with the singularities of children and adolescents with a chronic disease and their parents. This article stresses the importance of recognising children and adolescents with a chronic disease as citizens who have both special needs and special rights, and emphasises the important role of support associations as mediators among various actors in the health sphere (private, public, political, medical institutions …). This research focuses on the empowerment, well-being and participation behind the experience of chronic conditions as perceived by children and adolescents with chronic illnesses, their families, and health and educational professionals. The data collected includes interviews, focus group discussions, questionnaires and a family narrative. The results suggest that there is a strong need for alternative discourses about citizenship and participation in the life experiences of people with a chronic disease, especially because the quality of their life contexts appears to be a determinant factor for well-being and empowerment.

How do we live with chronic disease? A rights-based approach promoting the wellbeing of children with chronic disease

“…As phase 1 reveals, although the diversity of experiences regarding problematic situations that both children and families have to solve, their discourse seems to express gratitude and appeasement. In line with previous studies 29,42 , this relates to the invisibility of the disease -"Not having an exterior sign (…) apparently facilitates our lives"and the "exception" criteria, and results also from personal resources identification and individual mobilisation, in particular by parents. Nevertheless, it unavoidably highlights two main aspects: the reproduction of social stereotypes and the evident tendency to focus on individual ability to solve problems that still remain to be circumscribed to the people's chronic disease sphere 43,44 .…”

“…Once the importance of reconfiguring health and health policy becomes recognised, it is indeed necessary to contextualise in social and political terms the experience of living with a chronic disease. This implies a shift towards rights rather than needs in people's experiences 29 , recognising children with chronic disease and their families first and foremost as citizens who are able to intervene and to participate in the decisions that affect their lives 30 . Nevertheless, admitting that traditionally paternalistic models still prevail in the discussion of chronic disease 31 , we consider that the concept of empowerment is central in this debate, "since it involves the recognition of cultural practices, social and political citizenship that are experienced by different groups of people in different national contexts" 32 .…”

Key Educational Factors in the education of students with a medical condition

“…Previously discussed research underscores the school's need to develop proper strategies when dealing with students with medical conditions (A'Bear, ; L. Hopkins, Green, et al, ; Mourik, ). Indeed, embracing a systemic approach for the education of children with medical conditions is invaluable (Obiakor, Utley and Rotatori, ; Shaw and McCabe, ; Webb, ; Yates et al, ) as this approach considers the student with the medical condition as well their context and mutual interrelationships (Bronfenbrenner, ; Capurso, ; Ford and Lerner, ; Grier and Bradley‐Klug, ; Pais, Guedes and Menezes, ; Wideman‐Johnston, ; World Health Organization, ).…”

Saúde e escola: reflexões em torno da medicalização da educação

“…Fica, por conseguinte, claro que a tarefa de implementar, aplicar e fazer cumprir os direitos das crianças, ratificados pela Convenção da Organização das Nações Unidas (ONU) e transpostos para a legislação interna dos diferentes países, não cabe apenas ao Estado e às suas instituições, mas a toda sociedade civil 36 . Assim, recuperando o discurso de Ana -que admite que o filho não gosta de tomar a medicação e se compara a "um velhinho que só toma comprimidos" -constata-se a falta de envolvimento das próprias crianças e jovens em decisões sobre a sua saúde e a sua vida, isto é, parece que nem sempre são reconhecidos como cidadãos com direitos para além de necessidades 37 . O(s) espaço(s) em que se movem nem sempre são permeáveis à sua plena participação.…”