Patients experiences and social support needs following the diagnosis and initial treatment of acute leukemia - A qualitative study

Abstract Purpose This study explores how newly diagnosed patients with acute leukemia (AL) experience the diagnosis and the initial treatment, and their need and preferences for social support. Methods Explorative semi-structured individual interviews were carried out in patients with AL (n = 18) four to sixteen weeks post diagnosis. Thematic analysis was used to analyze the qualitative interview data. Results Identified themes were 1) Jolted by the diagnosis, and subtheme Loss of personal autonomy; 2) Restoring normality in everyday life, and subtheme Facing a new social identity; and 3) A lifeline of hope. Being newly diagnosed with AL was experienced as traumatic, which negatively affected personal autonomy and everyday life. There was a pressing need to restore a sense of normality in everyday life while managing a new social identity as a cancer patient. Social support from family, friends and other patients were invaluable and experienced as an important lifeline. Conclusion Receiving a life threatening diagnose and undergoing chemotherapeutic treatment had a negative impact on everyday life which required re-establishing daily life activities. This increased the need for social support which had a distinct role in facilitating the patients’ coping strategy. Clinical implications It is important to support and strengthen the patient's social network from the time of diagnosis. Future studies should examine the feasibility and benefit of experienced-based social support from peers (former patients) to patients with AL.