Qualitative Insights into the Factors Impacting Information Sharing in People with Chronic Haematological Malignancies

Abstract

Background. There are many different haematological malignancy subtypes. Most follow chronic pathways that are uncertain and unpredictable, which may lead to feelings of anxiety and distress. The provision of information can ameliorate such difficulties, but patients are known to have unmet needs in this regard. The aim of this study is to explore experiences of information sharing among patients with chronic blood cancers and the factors impacting this process. Methods. The study is set within a UK cohort of blood cancer patients, where care is provided across 14 hospitals according to national clinical guidelines. Purposive sampling was used to identify expert participants (based on experience), and in-depth qualitative interviews were conducted with 35 patients, 10 with a relative present. The study was intended to inform practice and utilised qualitative description, with thematic content analysis and systematic data coding. Results. Experiences of information sharing varied. Most patients described this positively, but not all. Several barriers and facilitators were identified, which are discussed within five themes: (1) shock affects ability to process information, (2) the importance of time to facilitate information exchange, (3) personal relationships have an impact on meeting information needs, (4) HCP interpersonal skills are central to good information sharing, and (5) communication skills and terminology. Conclusions. Patients with chronic blood cancers prefer to engage in information sharing when they are not in a state of shock, and when they have adequate time to process material that is effectively and sensitively delivered, by HCPs they know and trust.