Sharing our story individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson’s disease

Abstract

ABSTRACT Treatment with deep brain stimulation for Parkinson’s disease, leads to a rapid improvement in mobility, which may challenge patients and spouses when adjusting to everyday life. An intervention, developed to support the adjustment to everyday life with DBS, demonstrated that individualized meetings with a specialized nurse was experienced as important and fruitful by both patient and spouses. Purpose: The aim was to gain a deeper understanding of how the meetings contributed to the adjustment process. Method: 38 audio-recorded meetings and six written summaries from eight couples participating in the intervention, were analyzed in a hermeneutic process. Results: The analysis revealed four themes: A relational triad of co-creating personal knowing. Sharing and listening in an atmosphere of trust and openness. Unveiling the couple’s everyday life, coping strategies and expectations. Supporting adjustment through knowing their personal story. Conclusion: The triadic dynamics in the meetings were quite particular. The main focus was the patients’ and spouses’ stories, individually and as a couple. The DBS nurse pursues solutions based on professional and specialized knowledge of Parkinson’s disease and the couple’s everyday life. Thus, the intervention meetings offered tailored, individualized and specialized care in supporting adjustment to DBS for PD both individually and as couples.