Estelle R. Klasner

Getting the work done: a qualitative study of individuals with multiple sclerosis

The Problem : Work can be defined as an activity performed to accomplish something in the presence of obstacles that may make accomplishing the goal difficult. For individuals with MS, work is not only limited by physical impairments but also by factors such as fatigue and cognitive changes Purpose : The aim of this study is to examine the experiences of individuals with mild to moderate MS as they carry out everyday work activities both inside and outside the home. Method : Eleven women and three men were recruited from the community to participate in a series of semi-structured interviews. Using qualitative research methodology that examined the experiences of the participants, two major themes and seven subthemes emerged. Results : The first theme, Defining the work, included Priorities : seeing whats important; Plans : learning about resources and requirements; and Perspectives : fixing it yourself. The second theme, Changing how things get done, includes Precipitating factors; Awareness; Constructing the strategies; and Evaluating the strategies. Conclusions : Individuals with MS develop strategies and utilize resources in order to get the work done. Comparisons are made between existing intervention theories or programmes and the experiences described by participants in this study.

Discovering indices of contingency awareness in adults with multiple profound disabilities

We conducted two studies to examine parameters of social attention in contingency awareness training using switch activation with individuals who had multiple profound disabilities. In Study 1 we compared leisure devices and social attention as reinforcing stimuli with 5 individuals. Results indicated the reinforcing qualities of social attention over leisure devices with 2 individuals and documented the importance of session length in training. In Study 2 we investigated idiosyncratic behaviors as indicators of responsiveness with 3 of the 5 original participants as they activated switches. Behavior changes during switch activation versus nonactivation times in the leisure device and social attention conditions suggested volitional movement supporting contingency awareness and preference. Implications for clinical practice are discussed.

Patient Perspectives on Disease-Modifying Therapy in Multiple Sclerosis

The purpose of this study was to understand factors contributing to the decision-making processes of individuals with multiple sclerosis (MS) regarding the use of disease-modifying therapy (DMT). S...

Linguistic and cognitive supplementation strategies as augmentative and alternative communication techniques in huntington's disease: Case report

Huntingtons disease is a hereditary, neurodegenerative disorder with motor, cognitive, and emotional deficits that have a profound effect on the ability to communicate and must be considered when implementing augmentative communication interventions. A therapy approach employing both linguistic and cognitive supplementation strategies was taught to a 44-year-old man with Huntingtons disease. The use of a qualitative guided interview assisted in shifting the focus of assessment and treatment away from the speech impairment and on to communicative participation. The participant and his wife were able to use the strategies successfully and adapted them to meet other communicative needs.

The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis 1 1No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.

OBJECTIVE To attain a better understanding of the benefits and barriers faced by persons with multiple sclerosis (MS) in the workplace. DESIGN Qualitative research methodology comprising a series of semistructured interviews. SETTING Community-based setting. PARTICIPANTS Fourteen women and 2 men with MS living in the community who were employed or recently employed at the time of interviews. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURE Accounts of personal experiences related to employment. RESULTS Four themes emerged: the cost-benefit economy of working; fatigue and cognitive changes; stress in the workplace; and accommodations made to address barriers. Although participants valued work highly, they were also aware of the cost of being employed. The consequences of unemployment or changing jobs were considered negative and appeared stressful. For persons with MS, employment had both costs and significant benefits. Accommodations in the workplace and modifications of roles and responsibilities at home made it possible for individuals to continue working. CONCLUSIONS Health care providers must consider the complexity and timing of decisions by people with MS to continue or leave employment before recommending either action. Identifying critical periods of intervention to stabilize this cost-benefit balance is a critical next step for understanding issues of employment and MS.