The experience of attending a lay-led, chronic disease self-management programme from the perspective of participants with multiple sclerosis

Abstract

A lay-led, community-based intervention, the Chronic Disease Self-Management Course (CDSMC) is effective for a range of long-term health conditions (e.g. arthritis, heart disease). However, the perceived value and experience of the CDSMC for people with Multiple Sclerosis (MS) has not been examined. The present qualitative study addressed this omission. Ten participants with MS (7 female; age range 35 to 60 years; disease duration 4 to 19 years) were interviewed before attending the CDSMC and at 4-month follow-up. Data were analysed using Framework Analysis. Some participants learned new self-management techniques and reported enhanced confidence (self-efficacy), whereas other participants were already confident in their self-management ability and found the CDSMC acted as a reminder of techniques previously used. Relaxation, pacing, and goal setting were particularly valuable for managing fatigue. Goal setting helped some participants to build confidence. Participants valued meeting similar others including those with different conditions. The CDSMC was an opportunity for social comparison and inspirational role modelling. Improvements to the CDSMC were suggested, including the addition of specific MS information. Overall, the CDSMC was viewed as a valuable source of new skills and a reminder of previously learned self-management skills, particularly in the context of managing fatigue. Gender differences emerged.

A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN)

“…[99][100][101][102][103][134][135][136][207][208][209][210][211][212][213][214][215][216][217][218] Three studies were reported across multiple papers that were individually eligible for inclusion. [118][119][120][121][124][125][126] An additional two papers that did not meet the eligibility criteria as they had female-only samples are included in the synthesis because they presented data about women that formed the basis of gender comparisons made by the authors of included studies reporting findings from male participants.…”

“…Having discussed the 17 disagreements, we agreed that five studies on which there was disagreement would be included. 100,103,110,116,134 An additional four studies were identified through reference checks and efforts to locate published literature linked to unpublished work identified through the electronic search. 111,112,135,136 An additional two papers (women only), although individually ineligible, were located as 'linked papers' for two of the original 34 studies, 114,120 giving a total of 38 studies (reported in 44 papers), as shown in Figure 8.…”

Goals Set After Completing a Teleconference-Delivered Program for Managing Multiple Sclerosis Fatigue

“…In addition, realistic goal setting was linked to the successful planning and performing of activities that participants had avoided in the past (Barlow et al, 2009). Similarly, women with MS in another self-management study reported that setting goals with incremental steps helped them formulate their goals and monitor achievement over time (Stuifbergen et al, 2003).…”

“…Goal setting is a technique that is often taught during self-management programs for people with chronic illness to facilitate such behavioral changes (Von Korff, Gruman, Schaefer, Curry, & Wagner, 1997). Goal setting has been examined in previous MS-specific studies based in inpatient rehabilitation settings (Bloom et al, 2006;Khan, Pallant, & Turner-Stokes, 2008) and in community-based self-management programs (Barlow, Edwards, & Turner, 2009;Stuifbergen, Becker, Timmerman, & Kullberg, 2003). In inpatient rehabilitation studies, goal setting is often directed by clinicians and commonly focuses on symptom management (Bloom et al, 2006;Khan et al, 2008).…”

“…Participants in one community-based MS self-management study found goal setting to be helpful in achieving their goals during intervention because of improved feelings of empowerment and confidence gained through the process (Barlow et al, 2009). In addition, realistic goal setting was linked to the successful planning and performing of activities that participants had avoided in the past (Barlow et al, 2009).…”