Summary: | A multimethod descriptive, qualitative and quantitative research design was used to study the concept of quality of life of adults living with home enteral nutrition and to determine what life is like living the experience. Emphasis in this study is on the qualitative ethnographically-oriented interviews which are then supported by quantitative data supplied by the SF-36 Health Survey results. Twelve adults, within the Manitoba Home Nutrition Program, were interviewed using a semi-structured interview guide. All interviews were audio-taped, transcribed verbatim and coded using a mnemonic system developed by the investigator. Common themes were determined based on frequencies. Theme-related codes were searched using the edit/find function in MSOffice Word computer software. The SF-36 Health Survey was scored as per Medical Outcomes Trust scoring procedures. The SF-36 scores were compared to U.S. population norms and parallel technologies (home parenteral nutrition, dialysis, ventilator support) using t-tests. The SF-36 Health Status Survey results indicate that the home enteral nutrition group reported lower levels of physical functioning, physical role, general health, vitality, and social function than the average U.S. population. This was confirmed by the qualitative analysis. Common themes identified included: immobility due to the pole; time commitment infringes on activities; impact on normality; and benefits including survival. Managing the tube feed regimen poses many challenges to individuals. Those individuals that are able to adjust and adapt their own treatments to fit their lifestyles report less restraints imposed by this technology.
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