J Health Serv Res Policy 2002 Jul;7(3):151-9
Somerset M, Sharp D, Campbell R.
Division of Primary Healthcare, University of Bristol, Bristol, UK.
Many people who live with long-term illness experience a decline in their quality of life. The primary aim of this qualitative study was to identify aspects of life that contributed to the quality of the lives of people who had one particular chronic illness, namely multiple sclerosis (MS). A secondary aim was to use this information to highlight areas where there was potential for effective intervention by health or social services.
Sixteen people with MS who lived in a variety of circumstances and had a range of disabilities were interviewed in depth. Views relating to personal experience of chronic illness, diagnosis, living with disability, and conventional and alternative treatments were explored. Transcripts were analysed using a grounded theory approach.
Analysis of the interviews revealed that being subjectively reasonably happy and as socially active as desired was central to an acceptable quality of life. The extent of the personal control that participants were able to exert and their individual illness trajectory were found to be central to whether or not this aim was achieved. In addition, the importance of social comparison was revealed, although its influence upon quality of life was somewhat inconsistent. A number of other factors were found to play an influential role in the quality of people's lives. These are described and plausible links between factors are proposed.
Many aspects of living with chronic illness are unavoidable, but health or social intervention can affect others. Inappropriate personal assistance may result in dependency, which detracts from personal control and worsens quality of life. When appropriate, however, support may have beneficial consequences. By recognising the specific factors that link personal control and the illness trajectory, appropriate and timely support can be negotiated.