Qualitative research can capture the meaningful experiences and life values of persons with dementia not reported in quantitative studies. This researcher shares personal experience of the challenges faced and the lessons learned while conducting a qualitative study of 15 persons with early stage Alzheimer's disease. The purpose of this paper is to discuss the issues concerning determination of capacity to consent to research, consent/assent, communication challenges, and trustworthiness of data when conducting a qualitative study of persons with dementia. Understanding communication challenges due to dementia is important to develop effective communication strategies, such as simplifying the structure of questions, allowing ample time for participant's response, using reminiscence, and redirecting the dialogue. This information will be valuable to researchers conducting future qualitative studies and the resulting contributions to the body of knowledge about Alzheimer's
Objectives-Evaluate effects of a multi component intervention on fecal (FI) and urinary incontinence (UI) outcomes Design-Randomized controlled trial Setting-Six nursing homes Participants-One hundred and twelve Nursing Home (NH) residentsIntervention-Intervention subjects offered toileting assistance, exercise, and choice of food / fluid snacks every 2 hours for 8 hours per day over 3 months.Measurements-Frequency of UI and FI and rate of appropriate toileting as determined by direct checks from research staff. Anorectal assessments were completed on subset of 29 residents.Results-Intervention significantly increased physical activity, frequency of toileting and food/ fluid intake Urinary incontinence improved (p<.05) as did frequency of bowel movements (p<.01) and percent of bowel movements (p <.01) in toilet. The frequency of fecal incontinence did not Corresponding Author: John F. Schnelle, PhD, Professor of Medicine, Vanderbilt University Medical Center, Director, Center for Quality Aging, 1161 21st Ave. South, S-1121 Medical Center North, VUMC, Nashville, TN 37232-2400. Alternate corresponding author: Sandra Simmons, PhD, sandra.simmons@vanderbilt.edu Conflict of Interest:Dr. Felix W. Leung: Oceanic therapeutics and produces constipation medication.Author Contributions: Each author contributed to study concept, data analyses, interpretation of data, and/or manuscript preparation. JFS, SFS and LB -Study concept and design, acquisition of subjects and/or data, analysis and interpretation of data, and preparation of manuscript. FWL and SSCR -Study concept and design, analysis and interpretation of data, and preparation of manuscript. EK and JWC -Analysis and interpretation of data, and preparation of manuscript. change. Most subjects (89%) who underwent anorectal testing showed a dyssynergic voiding pattern which could explain the lack of efficacy of this intervention program alone on fecal incontinence. Conclusion-The multi-component intervention significantly changed multiple risk factors associated with fecal incontinence and increased bowel movements without decreasing fecal incontinence. The dyssynergic voiding pattern and rectal hyposensitivity suggest that future interventions may have to be supplemented with bulking agents (fiber) and/or biofeedback therapy to improve bowel function.
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