S.O.S! My Child is at School: A Hermeneutic of the Experience of Living a Chronic Disease in the School Environment

Purpose The purpose of the present study is to understand the experience of living a chronic disease in the school, from the perspective of the parents. Design and methods A Grounded Theory study was proposed with a sample of 14 affected families with children between three and eleven years old, all of them from the west and south of Spain. Information was collected using semi-structured surveys and the constant comparative method was used for the analysis. Results Results are divided into three main themes: SOS! My child is at school, The Systems (don't) Answer and Families Answer. Parents live school enrolment in a state of constant alertness, characterized by distrust, worry, fear, anguish, and indignation. The responses to the problem given by the education and health systems are insufficient, uncoordinated and inefficient. Therefore, parents end up not expecting anything, they transmit the information, organize training sessions, and solve any occurring incident by themselves, often at the expense of quitting their jobs. Conclusion The presence of a school nurse would mean for these parents the integration between the education and health systems. Practice implications As findings highlight, more collaboration and sensitivity between the healthcare and educational system is needed, and the school nurse has been indicated as a crucial figure in this matter.