Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

Abstract

Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS. Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3-5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed. Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to "time-consuming" exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of personcentred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring. Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions. ä IMPLICATIONS FOR REHABILITATION A multimodal group lifestyle intervention may be useful to assist people with multiple sclerosis in information gathering, decision making, attitudinal changes, and practical strategies regarding health behaviors; as well as providing a sense of hope for the future and control over wellbeing. While participants are unlikely to engage with all components of a multimodal intervention to the recommended level, they are likely to make improvements to one or more health behaviors. Experiential learning, including going through recipes and ingredient lists, and practicing meditation and physical exercises, is helpful to instigate behavior change. The initiation and maintenance of behavior change was assisted by support from family, friends, and health practitioners; and practical strategies employed by participants, including planning, self-monitoring, and tailoring activities to ability and preference ARTICLE HISTORY

Greater Engagement with Health Information Is Associated with Adoption and Maintenance of Healthy Lifestyle Behaviours in People with MS

“…Delivery of health information through diverse methods, including print, web-based interventions, and face-to-face live-in workshops, are associated with changes in behaviour. The success of such interventions appears to be related to the combination of the delivery of evidence from experts and practical interventions tailored to personalised goals [13,16]. Moreover, focus groups have revealed pwMS want a variety of information from a variety of sources and that this information should be both stratified, interactive, and provided by subject experts to aid in the uptake of positive lifestyle behaviours [37][38][39].…”

“…Behaviours that require more time commitments or adjustments may be especially difficult to modify. In our previous qualitative study of pwMS who attended live-in workshops 3-5 years prior, participants continued to follow dietary but not physical behaviours, stating barriers to adherence to all recommended behaviours included disease symptoms, environment, support at home, time and financial constraints, and lack of patient-centred support and motivation, amongst others [16]. PwMS reported that supplementation and dietary changes were easiest because they were less effortful and had less impact on social or family life.…”

“…In contrast, initiating new habits that were time consuming, such as meditation and exercise, were challenging for most PwMS. Enablers for adherence to healthy behaviours were identified as experiential learning, peer support, and practical strategies [16]. Future studies to understand how health communication may assist to overcome barriers and incorporate enablers for adopting and maintaining changes in these behaviours is required.…”

“…Patient-centred workshops effectively increase self-efficacy, which ultimately stimulate behavioural change [14,15]. PwMS reported that their confidence and knowledge improved through experiential learning and daily living skills practice, both enablers for adherence to lifestyle behaviours [16].…”

‘I can do this’: a qualitative exploration of acceptability and experiences of a physical activity behaviour change intervention in people with multiple sclerosis in the UK

“…To ensure successful implementation and maintenance of behaviour change, interventions must consider and match the preferences and values of people with MS. Although existing literature has explored exercise and PA experiences of people with MS,18 19 to date few studies have investigated the experiences, opinions and preferences of people with MS regarding behaviour change interventions 20 21. Detailed qualitative exploration and analysis of the experiences of people with MS in such programmes has important implications for intervention refinement and informing future implementation strategies to enhance PA.…”