The interview

As well as having agreed to the interview on the SurveyMonkey questionnaire, verbal consent to participate was recorded. An introduction, to add context for the participants, and to acknowledge the researchers’ interest in the research question and potential preconceptions, was given: “the reason we are speaking with you today is that current research into partners of people with MS generally paints a fairly negative view of the experiences of people with MS and their partners. We are interested in speaking with partners of people who have been to a residential lifestyle workshop and modified their lifestyle to manage their MS, to understand your particular experiences. Is there anything you would like to ask about the study and me before we commence?”

To supplement data obtained in the questionnaire, some further demographic data was collected. To assess the level of disability of the person with MS, participants were asked “has the person with MS used a walking aid in the last 6 months?” This corresponds with step four or above on the Patient Determined Disease Steps scale, meaning that some form of mobility support was required at least some of the time.[28]

Interviewers followed a pre-designed interview schedule (S1 File). Three broad questions were asked regarding the effect that MS and lifestyle modification had on the partner’s life, their relationship with the person with MS and on their view of the future. Interview prompts were provided for the interviewer but participants were encouraged to expand as much as they desired. Interviews were conducted between July and October 2016 via telephone or internet interface (Skype). Interviewers were located in Melbourne, Australia. Interviewees were located in their home and were generally alone, although two participants indicated the person with MS could hear the discussion but played no role in the interview. No pilot interviews were conducted. Following the conduct of four interviews, interviewers listened to audio recordings of each other’s interviews and were satisfied the interviews were being conducted similarly across interviewers. No adjustments to interviewing technique were required.