| Description |
The purpose of this constructivist grounded theory study was to identify and examine challenges and strategies used by people with parkinsonism to maintain identity. These concerns were explored within the context of daily life, vital relationships, and familiar roles. The setting was three Midwestern states during historic winter weather conditions (2013-2014). Illness descriptions were obtained through medication logs and two scales: Hoehn and Yahr staging and activities of daily living. Qualitative data consisted of 62 in-depth interviews, photos, videos, fieldnotes, and memos. Twenty-five volunteers (10 female/15 male; ages 40-95) with self-reported Parkinson disease participated. Range of disease duration was 3 months to 30 years. Disease staging: I (n = 0), II (n = 0), III (n = 14), IV (n = 8), and V (n = 3). Stage III participants completed daily living activities at an independence level of 60 to 80%, while stage V participants ranged from 20 to 30%. Twenty-one participants used carbidopa-levodopa. Analytic coding procedures generated the theory of Preserving self. This clinically logical 5-staged theory represents social and psychological processes for maintaining identity while living with a life-limiting illness. The stages and transitions are: (1) Making sense of symptoms describes noticing and taking action prediagnosis. Transition: Finding out the diagnosis was shocking, but time-limited. (2) Turning points confronted abilities with demanding tasks and strong emotions. Transition: Unsettling reminders of losses were perpetual. (3) Dilemmas of identity are the difficulties relinquishing comfortable self-attributes. Transition: Sifting and sorting is a time of grieving, letting go, and considering new self-identities. (4) Reconnecting the self synthesizes former and current identities. Transition: Balancing risks and rewards compares a lost past with possible futures. (5) Envisioning a future demonstrates planning pragmatically with tunnel vision. iv Creative methods were developed for maintaining independence; abilities were frequently overestimated. An interesting finding was the use of self-adjusted carbidopa-levodopa beginning during Sifting and sorting continuing through Reconnecting the self. Medication was used as a social prosthesis to function normally, maintain valued relationships, and roles. People with parkinsonisim desperately seek normalcy. Recommendations include medication instruction to bridge wearing-off effects and sensory integrative activities as a self-reconnecting technique. |
