What do patients need to know? Living with inflammatory bowel disease

Abstract

Aims and objectives. To explore the need for knowledge as expressed by patients diagnosed with inflammatory bowel disease. Background. Inflammatory bowel disease has a major impact on physical and emotional well-being, placing considerable demands on patients' management of daily activities. Although inflammatory bowel disease patients' level of knowledge about their disease has been previously studied, it is necessary to learn more about their self-expressed needs. Design. The study was designed to explore patients' need for knowledge; therefore, an inductive method was chosen. Methods. Thirty patients with inflammatory bowel disease were interviewed. Content analysis was used to describe their need for knowledge. Results. The analysis generated three categories and eight subcategories: (1) knowledge related to the course of the disease (subcategories: understanding causal relationships between symptoms and the disease, complications related to the disease and understanding treatment), (2) knowledge related to managing everyday life (subcategories: behaviour that enhances well-being and managing social life) and (3) difficulty understanding and assimilating information (subcategories: shifting knowledge needs, help to understand information and reasons for wanting or not wanting knowledge). Conclusion. Knowledge needs were related to what to expect when living with inflammatory bowel disease in order to manage everyday life. There was a great variation in the need for knowledge, which was greatest immediately following diagnosis and during relapse. Relevance to clinical practice. It is important for healthcare providers to ascertain the patients' individual knowledge needs and together with them formulate an individual care plan that gives the patient the necessary knowledge to manage their health and social life.

Stress, coping and support needs of patients with ulcerative colitis or Crohn's disease: a qualitative descriptive study

“…, Lesnovska et al . ). Patients who do not have sufficient information about the disease report high levels of concerns related to their condition (Moser et al .…”

“…Because knowledge needs change over time and are most pronounced at the time of diagnosis and relapse, the importance of adapting information and care to the needs of the individual was emphasised (Lesnovska et al . ). Furthermore, studies have shown that patients with UC or CD reported satisfaction with the information and the opportunity to meet and exchange experiences with other patients after participation in information or support groups (Larsson et al .…”

“…Lesnovska et al . () found that patients with IBD have important information needs about the course of the disease, prognosis, available treatment options, how to manage disease symptoms and how the disease will affect daily life. In addition, the patients require professional support to understand this information.…”

Enfermedad de Crohn: experiencias de vivir con una cronicidad

“…13,14 Además, este reconocimiento no sólo afecta a la persona que la padece, sino también a sus familias y redes sociales. 15 Cuando la enfermedad es diagnosticada, los afectados deben buscar información acerca de la misma, [16][17][18] lo que crea en ellos una sensación de abandono que podría resolverse si dispusieran de una mayor información sobre la enfermedad con la que tienen que lidiar el Conociendo la experiencia de vida de las personas afectadas por EC se descubre cuáles son sus preocupaciones más inmediatas, sus miedos y sobre todo la forma que tienen de afrontar su día a día. Varios estudios 23,[38][39][40][41] proponen la creación de un equipo multidisciplinar para cubrir las necesidades de los afectados, dándoles voz desde el inicio de la enfermedad.…”

Patients´ Variations of Reflection About and Understanding of Long-Term Illness- Impact of Illness Perception on Trust in Oneself or Others

“…One study found that almost a quarter of the patients had received insufficient information about their illness, self-care methods and the significance of the medication [4]. Patients often have insufficient knowledge of disease processes; want to know more about the course of their illness, and show great variations in the need for knowledge; which is at its greatest immediately following diagnosis and during relapse [5, 6]. Studies also show that patients do not understand the illness despite receiving information from and being in close contact with a specialist [7].…”