Contributions
Abstract: EP1419
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: The Trajectories of Outcomes in Neurological Conditions study began with qualitative work with people with Multiple Sclerosis (pwMS) to identify factors which they believed influential for quality of life. These interviews and focus groups identified Hope as an important factor. However, cognitive debriefing of the Herth Hope Index-12 revealed that it lacked face validity for pwMS. We conducted a thematic analysis of Hope in pwMS as a foundation step to developing an MS-specific Hope Index.
Objective: To identify the concepts and domains relevant to Hope in MS.
Method: One-to-one interviews were done with a wide range of pwMS, transcribed and subjected to thematic analysis, until no new themes emerged. The resulting domains were compared to the literature.
Results: Saturation of themes was achieved by 43 interviews. Participants were mostly female (62.8%), age range 20-75 years, illness duration 0.5-45 years, with a range of disability as measured by EDSS; 16 (37%) had relapsing, 13 (30%) primary progressive and 14 (33%) secondary progressive disease.
Hope was conceptualised as involving a better future state, achieving which involved both motivation and activity. Participants varied considerably in whether they believed they still could aspire to a better future state; this was not reflective of illness duration or disability. The motivation to work towards future goals varied, for some the unpredictability of outcome in MS left them feeling demotivated and fatalistic, whereas others saw the variability of outcome as confirmation that it was worth them trying. PwMS modified their path to the aspired state according to the effects of their MS, and they valued professional advice on their plans.
Conclusion: Hope for pwMS has three components: acknowledging the possibility of a desirable future state (goals), being motivated to aspire to it (agency) and making an action plan (pathways). This is in keeping with earlier work which defined Hope as "a positive motivational state that is based on
successful (a) agency (goal-directed energy), and (b) pathways (planning to meet goals)"1.
1 Snyder CR, Irving L, Anderson J (1991). Hope and health: Measuring the will and the ways. In Handbook of Social and Clinical Psychology (p 287).
Disclosure: Young CA, Ando H and Cousins R declare no conflicts of interest for this work. The TONiC study was supported by unrestricted grant support from NIHR, MNDA, Walton Neuroscience Charity, Biogen, Genzyme, Merck, Novartis, Roche, Teva.
Abstract: EP1419
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: The Trajectories of Outcomes in Neurological Conditions study began with qualitative work with people with Multiple Sclerosis (pwMS) to identify factors which they believed influential for quality of life. These interviews and focus groups identified Hope as an important factor. However, cognitive debriefing of the Herth Hope Index-12 revealed that it lacked face validity for pwMS. We conducted a thematic analysis of Hope in pwMS as a foundation step to developing an MS-specific Hope Index.
Objective: To identify the concepts and domains relevant to Hope in MS.
Method: One-to-one interviews were done with a wide range of pwMS, transcribed and subjected to thematic analysis, until no new themes emerged. The resulting domains were compared to the literature.
Results: Saturation of themes was achieved by 43 interviews. Participants were mostly female (62.8%), age range 20-75 years, illness duration 0.5-45 years, with a range of disability as measured by EDSS; 16 (37%) had relapsing, 13 (30%) primary progressive and 14 (33%) secondary progressive disease.
Hope was conceptualised as involving a better future state, achieving which involved both motivation and activity. Participants varied considerably in whether they believed they still could aspire to a better future state; this was not reflective of illness duration or disability. The motivation to work towards future goals varied, for some the unpredictability of outcome in MS left them feeling demotivated and fatalistic, whereas others saw the variability of outcome as confirmation that it was worth them trying. PwMS modified their path to the aspired state according to the effects of their MS, and they valued professional advice on their plans.
Conclusion: Hope for pwMS has three components: acknowledging the possibility of a desirable future state (goals), being motivated to aspire to it (agency) and making an action plan (pathways). This is in keeping with earlier work which defined Hope as "a positive motivational state that is based on
successful (a) agency (goal-directed energy), and (b) pathways (planning to meet goals)"1.
1 Snyder CR, Irving L, Anderson J (1991). Hope and health: Measuring the will and the ways. In Handbook of Social and Clinical Psychology (p 287).
Disclosure: Young CA, Ando H and Cousins R declare no conflicts of interest for this work. The TONiC study was supported by unrestricted grant support from NIHR, MNDA, Walton Neuroscience Charity, Biogen, Genzyme, Merck, Novartis, Roche, Teva.