The importance of personal documentation for patients living with long‐term illness symptoms after pituitary surgery: A Constructivist Grounded Theory study

INTRODUCTION: Despite surgical treatment, pituitary adenomas often cause long‐term illness symptoms, that profoundly impact patients' quality of life physically, psychologically and socially. Healthcare professionals often fail to recognize and discuss the ensuing problems. Personal documentation, such as symptom monitoring, reflective writing or even posts on social media, may help this patient group to manage their daily life and support communication of their care needs. Documentation strategies and the role of documentation for people with long‐term symptoms after pituitary adenoma surgery are currently unknown. AIM: To examine the effects and strategies of documenting symptoms, activities and physical and emotional well‐being among people living with long‐term pituitary adenoma. METHODS: In this Constructivist Grounded Theory study, 12 individuals living with long‐term illness symptoms after pituitary adenoma surgery described their documentation strategies in in‐depth interviews using teleconferencing and photo‐elicitation between August and October 2020. RESULTS: Strategies for documentation included analogue and digital media. One core category (Exercising autonomy) and three categories describing processes (Gaining insight, Striving for control and Sharing) emerged from the analysis. These three interrelated processes become an expression of autonomy to manage life and make sense of chronic illness. Personal documentation is a flexible tool that is used more extensively in times of ill health and less in times of relative well‐being. Sharing documentation with healthcare professionals facilitated care planning and sharing with friends and family fostered emotional well‐being. CONCLUSION: Personal documentation is a valuable resource for managing life after pituitary adenoma surgery. The current findings may be relevant to other chronic illnesses. Further research exploring potential tools for personal documentation is needed. PATIENT OR PUBLIC CONTRIBUTION: We deliberately chose a Constructivist Grounded Theory approach for this interview study. Using Constructivist Grounded Theory, we gave people living with long‐term symptoms a voice, allowing them to freely speak about managing their illness in connection with personal documentation. The theoretical sampling approach enabled us to invite participants that could provide a broad overview of the landscape of personal documentation.