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.

Satisfaction with communicative participation as defined by adults with multiple sclerosis: a qualitative study.

PURPOSE: This study examined satisfaction with communicative participation as reported by adults with multiple sclerosis (MS). METHOD: Eight community-dwelling adults with MS participated in semi-structured interviews. They were asked to discuss their satisfaction with their communication in a variety of situations. Interviews were analyzed using a constant comparative method of qualitative description. RESULTS: Themes derived included: Comfort, consisting of Ease and Confidence; Success of the Outcome, including Function is Achieved and A Connection is Made; and Personal Meaning of Participation, including Personal Preferences, Comparison with the Past, and Thinking about One's Own Communication. CONCLUSIONS: Participants described multiple facets of satisfaction with communicative participation. Some of the dimensions were similar to those in existing assessment instruments such as levels of ease or difficulty with performance. Participants did not talk about frequency of activities as a key part of their satisfaction. Implications for identifying intervention targets and treatment outcome measurements are provided. LEARNING OUTCOMES: The reader should be able to: 1) define communicative participation and identify key elements of this construct; 2) identify the issues that were most relevant to satisfaction with communicative participation with participants with MS; and 3) identify reasons for greater emphasis on the subjective viewpoint of people with communication disorders in measurement of treatment outcomes.

Measuring communicative participation: a review of self-report instruments in speech-language pathology.

PURPOSE: To assess the adequacy of self-report instruments in speech-language pathology for measuring a construct called communicative participation. METHOD: Six instruments were evaluated relative to (a) the construct measured, (b) the relevance of individual items to communicative participation, and (c) their psychometric properties. RESULTS: No instrument exclusively measured communicative participation. Twenty-six percent (n = 34) of all items (N = 132) across the reviewed instruments were consistent with communicative participation. The majority (76%) of the 34 items were associated with general communication, while the remaining 24% of the items were associated with communication at work, during leisure, or for establishing relationships. Instruments varied relative to psychometric properties. CONCLUSIONS: No existing self-report instruments in speech-language pathology were found to be solely dedicated to measuring communicative participation. Developing an instrument for measuring communicative participation is essential for meeting the requirements of our scope of practice.

Taking part in life: enhancing participation in multiple sclerosis.

Health care professionals participating in rehabilitation for people with MS can play a critical role in enhancing limited outcomes such as enhanced mobility, reductions in symptoms such as pain and depression, and the metaoutcome-participation. This role will be significantly more effective if the health care professional acknowledges and validates the different perspectives of the professional and the patient and recognizes the expertise of the patient who has lived with MS in the context of his or her life. Assuming this role effectively requires that the health care professional develop a collaborative relationship with the patient and understand that the role may change depending on the stage of MS and the individual's circumstances.

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 what's 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.

The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis.

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.