Benefits and challenges of recording biographical audiobooks by incurably ill parents to their children: A semi-structured interview study.

Abstract

Background: There is initial evidence that biographical audio recordings have a positive effect on people with advanced, incurable illnesses, but also that such recordings can represent a major challenge. Little is yet known about the interactions of positive and negative effects, as well as certain groups of patients with incurable illnesses.

Objectives: The aim of this study is to identify positive and negative effects of a personal family audiobook recording on incurably ill patients with underage children, suggestions for improving the implementation, and feasibility in parallel with somatic treatment.

Design: Qualitative, descriptive study.

Methods: Semi-structured interviews, transcribed and analyzed using qualitative content analysis. The main categories were set deductively; the subcategories were developed inductively.

Results: Twelve patients with advanced, incurable diseases (66.67% female; age in years M = 43.6, range: 38-55) with children (<18 years) after recording a personal family audiobook. Patients experienced positive (e.g., relief, gratitude), negative (e.g., insecurity, sadness), and neutral emotions (e.g., feeling emotional, ambivalent). They described positive (e.g., pleasant memories) and negative effects for themselves (e.g., self-criticism), for their family (e.g., creating a legacy, no understanding, respectively), as well as positive and negative effects within the process of recording the audiobook (e.g., grateful for support, time investment, respectively). Some patients mentioned unspecific positive effects. The recording was easy to implement, as planning and implementation were individually adapted to the patients' needs. All patients would recommend the audiobook.

Conclusion: There was evidence that the audiobook strengthened coping strategies; the concept of generativity seems particularly important. Nevertheless, the process was described as exhausting and challenging. Therefore, patients should decide whether they want to record a family audiobook and should be in sufficiently good mental and physical condition when they start the recording.

Trial registration: German Clinical Trials Register (Deutsches Register Klinischer Studien; DRKS00029252); registration date: June 10, 2022.