From the Inner Circle to Rebuilding Social Networks: A Grounded Theory Longitudinal Study Exploring the Experience of Close Personal Relationships from the Perspective of People with Post Stroke Aphasia

Background: Interpersonal relationships are frequently subject to challenges and changes following the onset of aphasia and have strong ties with psychosocial and health outcomes. In order to be able to effectively support people with aphasia, a greater understanding of how challenges and changes evolve over time is needed. Aims: The current research sought to understand the lived experience of interpersonal relationships for people with aphasia through longitudinal enquiry over the first year following the onset of stroke. Methods and Procedures: Seven participants with aphasia (6 male, 1 female) with aphasia ranging from mild to severe were recruited through inpatient rehabilitation units. Four were married and three lived alone. They were interviewed on four occasions beginning around the time of their discharge home and lasting for around one year following their return home. Researchers adopted a constructivist grounded theory approach and data were transcribed, coded and analysed using a constant comparative method. Outcomes and Results: This research provides novel insights into the progression of interpersonal relationships over time following the onset of aphasia. Early on, participants retreated into a core group of close others characterised as their ‘inner circle’. During early stages, inner circle relationships were subject to challenges and changes as people learned to live with aphasia. As they felt ready, people with aphasia began to reconnect with friends. This process was often mediated by spouses and in the early phases of recovery was limited and challenging. Reconnection with friends brought with it varying degrees of connectedness, however for those without strong inner circle relationships, marked isolation occurred at all points throughout the year following discharge. Conclusions: Relationships are frequently impacted by the presence of aphasia and are subject to changes and challenges. This research highlights phases which people with aphasia may move through as they adjust to their new social worlds. These findings have clear implications for the development and timing of interventions and emphasise the need to support those most at risk.