FC02
Identifying the Unmet Needs of Adults with Multiple Sclerosis (MS) Experiencing Cognitive Difficulties and Their Support Partners.
Cognitive difficulties are a prominent feature in people with MS and is a clinical challenge for them and their family. This project aimed at identifying the needs of adults with MS who have cognitive challenges and their support partners to inform an intervention to address these needs and improve the overall functioning and well-being of adults with MS and their support partners.
Objectives: N/A
Methods:
15 persons with MS and their support partners participated in separate semi-structured interviews, which sought information related to challenges experienced by people with MS-related cognitive difficulties and their support partners. Including the impact of cognitive difficulties on patient functioning, caregiving, family relationships; the effects of support and therapies on cognitive and functional difficulties; and ideal and acceptable outcomes for an intervention targeting these challenges. A constant comparative method (Glaser & Strauss, 1967) was used to identify and code categories, while also comparing data to each the wider literature (Charmaz, 2011).
Results:
Couples identified how their shared experience brought them closer, and taught them how to empathize and support each other. Couples showed resilience dealing with daily issues by adapting to change created by challenges because of changes in cognition such as ‘brain fog’, focusing or short term memory. These changes included experiencing difficulties in social situations, losing independence or their hobbies. Couples said they were impacted daily and had difficulty learning to communicate their needs and anxieties about the cognitive changes, how to best help each other, and how to deal with feelings of impatience and guilt. Some couples were able to explain how they learnt to adapt and manage better and become more resilient. Examples given were the support partner taking on more household responsibilities, or explaining instructions in notes.
Conclusions:
Couples were interested in learning about cognitive changes in MS and how to manage changes now and in the future. This could be learning skills for daily management, strategies for reducing anxiety, learning more effective communication, problem solving and finding more information about cognitive changes in MS. From the needs identified in this research an intervention to support couples is being designed. This research is important when considering the needs of couples and how best to support them.
References
Charmaz, K. (2011). Grounded theory methods in social justice research. The Sage handbook of qualitative research, 4, 359-380.
Glaser, B. G., Strauss, A. L., & Strutzel, E. (1968). The discovery of grounded theory; strategies for qualitative research. Nursing research, 17(4), 364.