Abstract
Introduction: Multiple sclerosis (MS) is an autoimmune disease that affects the central nervous system. MS generally progresses gradually, with alternating periods of remission, good health and disabling flare-ups. The impact of the disease results in people living with MS and their spouses having to confront a variety of changes and challenges in daily, family and social life. The aim of this study was to explore how people living with MS and their spouses cope with the impact of MS on their lives including daily activities, family and social functions.
Methods: This qualitative study was conducted using a constructivist grounded theory approach. A purposive sample of 16 people with MS and 12 spouses were recruited in Qazvin in the north of Iran. Data were collected through semi-structured interviews with participants from October 2014 to January 2015. People with MS and their spouses were interviewed separately. Data collection continued until data saturation was reached, involving 37 interviews with people living with MS and their spouses.
The interviews were digitally recorded and analysed using initial coding in the field of study. The recorded interviews were then transcribed and analysed through focused and theoretical coding. Throughout the analysis, codes and categories were constantly compared, and memos were written about them. Finally, codes, categories and memos were integrated through theoretical sorting and diagramming. A model of coping was developed with the core category and its connection with related categories demonstrated.
Results: The analysis revealed the pathway, pattern and process of coping with the impact of MS. People with MS described a coping pattern with a certain direction and orientation. Direction of coping was related to the anticipated outcomes in relation to disease, self or others. Therefore, the sub-themes of anticipatory coping was categorised into self-directed, disease-directed or other-directed. Participants then focused on the orientations of coping drawing on certain strategies including actions, reactions, interactions and counteractions.
The analysis also found that concurrent to the development of patterns and processes of coping, people living with MS managed their own or others’ coping style through a concept named as “Meta-coping”. Meta-coping was also the main coping pattern employed by spouses in order to deal with their partners’ coping style. In meta-coping, participants changed their coping style through shifting between coping orientations mainly from reaction to interaction. They also worked through a process of meta-coping including considering, reflecting and responding.
During the process of developing a coping pattern, participants moved between different pathways of coping which were identified as the “main”, “transitional” and “maintenance” pathways. In the main pathway, participants coped directly with the situation through anticipatory coping and meta-coping. Participants sustained their main pattern of coping through the maintenance pathway or alternatively moved from the main pathway to the additional one in order to manage stress and promote their health. Participants also described coping in the context of commitment to coping, self-outlook, outlook to MS and life and support.
Conclusion: This study has generated new insight into coping with MS through the perspectives of people living with MS and their spouses. The results suggest that coping starts with the anticipation of stressors, and coping is not limited to managing stressors; it can be used for dealing with coping for self and others through meta-coping. A model of coping has been developed contributing to theoretical development in the field and with clinical implications to enhance practice.