Owing to the dearth of research on this topic, this study takes an exploratory, qualitative approach, with no explicit theory or hypothesis set out in advance, but becomes progressively sharpened as the study proceeds [21]. In-depth qualitative interviewing is characterised by receptive, careful listening, open-ended questions, and additional probing on the part of the interviewer [22]. Interviews with people with MS and their spouses (who did not have MS) were conducted in a semi-structured format [23], which provides the interviewer the flexibility to probe participants’ answers for more detail. An interview guide provided the basic topics, which included questions about their current exercise regime, overcoming barriers to exercise, and the extent to which exercise has had an impact on their quality of life. These key topics were discussed with all participants, although the semi-structured interview permitted the exploration of new issues significant to the participant that emerged during individual interviews [23].
Participant recruitment procedure
The lead author’s former involvement in an exercise program provided the initial contacts. The program includes group members both with and without MS. This group has scheduled workouts twice per week, and while they meet as a collective, each member has his or her own individualized exercise program that they follow. Workouts generally last for one hour. The three members in the group who have MS were approached and agreed to take part in the study. In addition, we asked each of their respective spouses to participate in an interview, as this would help to provide a more holistic representation of living with the disease and gain their perspective on the role they might play in their spouse’s exercise involvement.
In order to gain a more complete picture of exercising with MS, two participants who exercise on their own (i.e., not as part of the abovementioned program) were also recruited through our connections within the MS community. Each agreed to discuss their exercise experiences. One participant plays recreational ice hockey and attends a gym once or twice a week for workout sessions. The second goes intermittently to a gym to work out on his own. Once again, we invited their respective spouses to participate in an interview.
Interview format
All of the interviews took place in a private room with one interviewer. While the exact sequence and wording of questions varied, questions to the participants with MS were aimed at understanding their current exercise regime and the extent to which their involvement in exercise affected their quality of life. Specifically, we were interested in how exercise affected both physical measures (i.e., activities of daily living) and participants’ psychological well-being. We were also interested in the challenges that people with MS encounter with respect to exercise, and how they attempted to meet those challenges.
The interviews with the spouses were done separately. Each spouse was asked a similar set of questions revolving around the aforementioned topics (regarding their partner’s exercise involvement) in an attempt to obtain a more complete picture of living with MS. In particular, we wanted to gain insight into the spouses’ perspective on how they believed exercise affected their partner’s physical and mental well-being, as well as the challenges that their partner faces. Interviews with each of the participants lasted from 40 to 75 min, with most interviews taking approximately 60 min.
Participants
The university hosting the exercise program provided ethical clearance for the study through their research ethics board. Participants were assured that every possible strategy would be utilized to protect their anonymity, and they all provided informed consent. We have given each participant a pseudonym to help protect their identity. In total we interviewed five participants with MS (four male, one female), all of whom ranged between four and six on the Kurtzke Expanded Disability Status Scale (EDSS) [24]. Four on the EDSS indicates significant disability but generally self-sufficient and able to walk 500 m without aid or rest. A score of six indicates greater mobility challenges; walking 100 m with our without rest generally requires the use of a walking aid (i.e., cane or crutch) [24]. The mean age was 57.4 (SD = 11.6, age range 45–70) and the average age that participants were diagnosed with MS was 44 years of age (SD = 12). In addition, we interviewed each of the spouses (one male, four female, mean age = 56.8, SD = 11.7, age range 44–69), who did not have MS, for a total of 10 interviews. All participants identified as Caucasian, and while the diagnosis of MS had, in some cases, affected their employment status, SES levels ranged from moderate to above average based on their stated professions.
Analysis
Each of the 10 interviews were transcribed verbatim and corrected against the audiotapes by the lead author. Based on the questions that were asked and numerous readings of the interviews, broad themes for the responses were established that provided a preliminary framework. In accordance with the hierarchical content analysis outlined by Côté and colleagues [25, 26], an inductive approach was then used in which comments and quotes from the interviews were coded as “meaning units.” Subsequently, common features between meaning units were identified. This procedure involved comparing and organizing meaning units into distinct groups [25, 27]. For example, a statement such as ‘my energy level is sometimes just so low’ was coded as an individual meaning unit. Similar statements that related to issues concerning energy level and fatigue were grouped together, eventually constituting the category managing energy levels. This category was later encompassed within the major theme, ‘Negotiating if exercise is worth it’.
Separate documents were created for each of these groups, or themes. These themes remained flexible during the investigation and were continually refined and debated amongst the co-authors until a classification system was agreed upon that best represented the qualitative material, a process referred to as the constant comparative method [28]. This process was initially carried out within each interview (i.e., intratextually) and then across interviews (i.e., intertextually) [29]. The outcome was three broad themes with several categories (or subthemes) within them. This approach to analysis ensured that the findings remained grounded in the data and allowed common themes to emerge across the entire data set representing the exercise experiences of individuals with MS and the extent to which these experiences affect, or are affected by, their spousal relationship [28]. In particular, this analytical strategy allowed us to understand the data in terms of exercise and its effects on physical and mental well-being, as well as how people with MS (and their partners) manage challenges in relation to exercise.
Trustworthiness
Expert-checking was incorporated by having experienced qualitative researchers involved in the development of the interview protocol and by consulting with them throughout the coding process [30]. Ongoing discussions between the authors enabled critical reflection on the analysed data until codes and themes were agreed upon. In addition, member-checking was employed by contacting the participants after the interview to invite them to add to or amend any of their responses.