The development of a theory of psychological adjustment to multiple sclerosis based on accounts of subjective experience

Reed, Jonathan Charles (1997). The development of a theory of psychological adjustment to multiple sclerosis based on accounts of subjective experience. PhD thesis The Open University.

Abstract

This study explores the process of psychological adjustment to multiple sclerosis. Fourteen participants who were given a definite diagnosis of multiple sclerosis between five and forty years prior to the study and who experienced the relapse-remitting form of the disease were interviewed face to face using a semi structured interview schedule. Grounded theory was used to analyse the interviews and to build a theoretical account of the process of psychological adjustment to multiple sclerosis.

The results suggest a model of adjustment in which some individuals with multiple sclerosis move from a stance of denial to a position of acknowledgement in response to the progress of the disease. Reaching acknowledgement allows individuals to adopt an active coping stance which can protect against negative psychological consequences. This adjustment process takes place against an overall process in which individuals experience multiple sclerosis as a progression through a series of different disease phases. Findings suggest that individuals also have to adjust within the social context. Role adjustment and communication were found to be central issues in the family adjustment process. Communication was also central to adjustment in the wider social context. Participants' service use suggests that they also undertake an adjustment from reliance on medical approaches to seeking out self help and alternative approaches. It is argued that this service use process reflects the individual adjustment process.

The findings are critically evaluated and compared to existing models of adaptation to chronic illness. The clinical and service implications are discussed. A critical discussion of the methodology is presented and implications for further research are explored.

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