Adjustment to a progressive disease over time: a 2-year longitudinal qualitative study

Abstract

Background: We aim to develop a tentative model that captures the adjustment process over time for people with a progressive disease. Methods: Using theoretical sampling, we identified and interviewed 34 people with progressive Multiple Sclerosis (MS). We interviewed participants at three time points (baseline, one-year follow-up, and two years follow-up). Participants were between 41 and 77 years of age (mean: 55 years). Thirteen participants were diagnosed with primary progressive MS and 21 with secondary progressive MS. We analysed the data using grounded theory. Findings: Firstly, people talked about how their struggles increased and whereas initially bracketing the illness off and carrying on, as usual, was a helpful strategy it became problematic as the condition progressed. Secondly, participants employed different adjustment modes to cope with their increased disabilities. Some scaled back their activities to live a more comfortable life (passive adjustment), others identified new activities that they could still perform (active adjustment), whereas a third group disengaged from the adjustment process completely (resignation). Factors like the relationship with their partner, concealing or revealing the condition, fear of having accidents and having previously a manual/ routine occupation influenced people’s adjustment mode. People moved among the three modes of adjustment and in particular between ‘passive’ and ‘active’ adjustment mode and partners facilitated flexibility between the two modes. Discussion: This model captures the ever-changing and flexible way people adjust to a changing condition and the role of the partner and other contextual factors that facilitate this flexible approach.