Living with a long-term condition: a grounded theory.

Abstract

This study explores and explains how people make sense of their long-term, potentially life-threatening, health condition. Thrombophilia offers an example of a little-researched condition which may not affect people significantly on a day-to-day basis, but can lead to acute illness. The second condition under consideration, asthma, was selected due to its similarity in this regard. The literature indicates that information about long-term conditions is acquired from various sources and influenced by experience. Such conditions are frequently perceived as being problematic. However, some are accepted, and affected individuals can achieve wellbeing. The literature does not offer insights into how knowledge may support this process of achieving wellbeing. A constructivist grounded theory approach was adopted, and interviews used to collect data from ten individuals affected by thrombophilia. Constant comparison of the data was carried out. Theoretical sampling suggested the inclusion of six people with a second long-term condition, and the process continued until saturation was reached. Findings indicated a two stage process. Gaining knowledge comprises of phases occurring pre-diagnosis and during diagnosis, and this assists participants in making sense of their condition. Living with a long-term condition consists of the phases making informed decisions, accepting the condition, and living with it. Previous research has not elucidated this entire process or the importance of the pre-diagnosis phase. Based on these findings, a theory is offered. This proposes that individuals diagnosed with a long-term condition create constructs about it based on information and experiences, which are used as the foundation for decisionmaking. Some people are able to accept their condition and its nuances. Those who understand their condition, make informed decisions and accept it are able to live with it. Those who are unable to do so will live alongside their condition and do not integrate it into their lives.