Preserving Self: Theorizing the Social and Psychological Processes of Living With Parkinson Disease

The purpose of this constructivist grounded theory article is to identify, explore, and theorize the social and psychological processes used by people with Parkinson disease. Analytic procedures generated the five-stage theory of Preserving self of people with Parkinson disease: (a) making sense of symptoms, (b) defining turning points, (c) experiencing identity dilemmas, (d) reconnecting the self, and (e) envisioning a future. Reminders of former selves and capabilities were painful; participants desperately sought normalcy. Participants developed creative methods for maintaining independence but frequently overestimated their abilities and took risks. Participants were 15 men and 10 women (ages 40-95), most of whom lived with their families. Disease status was ascertained through medication logs and two scales: Hoehn and Yahr staging and Activities of Daily Living. Data included 62 in-depth interviews, nonparticipant observation, and participant photos, videos, and related documents. Recommendations were derived from the theory to support processes of Preserving Self as interventions designed to reduce the loss of self and to enhance Preserving self. These recommendations included developing relationships, teaching expected and unexpected feelings and behaviors, and involvement with sensory integrating activities.