Improving quality of life in aphasia—Evidence for the effectiveness of the biographic-narrative approach

Abstract

Background: Caused by the constraints in communication, people with aphasia experience a pronounced decrease in quality of life (QoL). Beyond that identity negotiation is hindered which is crucial for QoL. This increases the severe loss of QoL. In sociocultural theories, it is postulated that identity is created through social interaction with others. In telling life stories, people build meaning and affirm identity. Biographic-narrative approaches use such life stories to support identity (re)development after disruptive events like stroke. Specific communication skills are needed for this, i.e., biographic-narrative competency. Therefore, such approaches have to be modified for the use in people with aphasia.

Aims: We target on the development and evaluation of an interdisciplinary multimodal approach of biographic-narrative work. The primary aim is to improve QoL through identity renegotiation.

Methods & Procedures: Five face-to-face interviews and seven group sessions were conducted in a before and after design over 10 weeks, with a follow-up assessment after three months. The intervention took place in ambulant rehabilitation units and at the Catholic University of Applied Sciences Mainz, Germany. The interviews comprise three narrative in-depth interviews, allowing participants to tell their life narration and two further semi-structured interviews to engross issues and prepare group topics. Narrations were supported by a multimodal approach, e.g., by pictures. To measure QoL, the Aachen Life Quality Inventory (ALQI), the Satisfaction with Life Scale (SWLS) and the Visual Analogue Mood Scales (VAMS) were used. Additionally, qualitative data was ascertained by semi-structured interviews with questions targeting personal growth or identity change. Seventeen participants, recruited consecutively from ambulant rehabilitation units and aphasia support groups, participated in the study. Almost all had a chronic but different type of aphasia (mean time post-stroke 40.82 months).

Outcomes & Results: We found a significant improvement in health-related QoL measured by the ALQI (p < .05), which remained stable after three months without intervention. Also the self-reported mood state “happiness” grew significantly, “confused” and “tense” sank significantly (p < .05). As expected, overall life satisfaction which is a very broadly based and stable judgment did not change. According to self-reports in semi-structured interviews at the end of the intervention participants experienced a change in perspective accompanied by a change in quality of participation.

Conclusions: QoL in people with aphasia can be improved by means of biographic-narrative intervention.

Keywords:

• Aphasia
• Quality of life
• Identity
• Biographic-narrative work
• Participation.

We thank the people with aphasia who took part in the study. We would like to acknowledge the valuable contribution of the project steering committee: Martina Bröckel, Brigitte Dempfle, Gabriele Lucius-Hoene and Claudia Neubert. Without the assistance of the staff members, Johanna Bach, Elena Esser, Anna Frey, Anna-Kathrin Klotz, Marie Leienbach, Johanna Ringe and Linda Vollgraff, the study would not have been possible. Furthermore, we thank the cooperative partners in the clinical field: the ambulant rehabilitation units Andreas and Voigt, Brauer, Ewen, Gaubatz, Müller, and the Caritas organisations Darmstadt and Mainz as well as the aphasia support centre Rhineland-Palatinate. Finally, we want to express our gratitude to Robin Cooley who revised the manuscript and improved our writing. The current work is supported by a grant of the German Federal Ministery of Education and Research [BMBF, 17S10X11].