Healthcare professionals’ views of the experiences of individuals living with Crohn’s disease in Spain. A qualitative study

Abstract

Crohn’s Disease (CD) in Spain lacks of a unified National Clinical Pathway and not even any early detection program and professional follow-up outpatient attention once it has been diagnosed. Little is known about the Spanish health professionals’ views of the experiences of individuals living with Crohn’s Disease nationwide and also about how the Spanish Health System faces this situation. A qualitative research method was conducted to explore this topic through in-depth interviews with eleven healthcare professionals, who represented different clinics treating people with CD from the province of Alicante (Spain). Three topics and seven sub-topics were derived from the analysis of the content emerging from the interviews. The three main topics were: the healthcare system as a hindrance for ongoing treatment of CD, the impact of the disease, support networks. The knowledge of CD gained by healthcare professionals, in the contexts studied here within, with regards to the psychosocial aspects and the experience of those living with the disease and their immediate circles, is poor, if not null on an academic level, becoming experiential on their incorporation into the professional field. Additionally, a priori, they lack the tools to address the doubts and concerns of patients from the moment of diagnosis through the ongoing care of the patient. Organizational hindrances, such as the lack of time and consensual guidelines for adequately monitoring CD patients in Alicante (Spain), further restrict the patient-professional relationship. Due to the consensus established by the National Agency regulating the contents of the Health Professions’ Education and Training across the country, we are assuming that the phenomenon highlighted may be similar in other parts of Spain. Therefore, it can be said that healthcare professionals have a limited understanding of the impact of CD on the day-to-day life of those affected, not being considered a part of the CD patients’ formal support network. Nonetheless, they are conscious of this limitation and advocate for multidisciplinary teams as the best means of attending to people living with CD. Our study outcomes may represent the first step onto identifying strategies and best practices for establishing an effective therapeutic relationship, as well as any hindering factors.