Home Health Nurses' Knowledge and Beliefs Regarding Suffering, Artificial Nutrition and Hydration in People with Late Stage Dementia

Purpose: The purpose of this mixed-method, convergent parallel design study was to identify home health nurses’ knowledge and beliefs toward suffering in persons with late-stage dementia and to investigate whether their knowledge and beliefs may have an effect upon their guidance of families of individuals with late-stage dementia.  

Methods: A sample (n = 17) of home health nurses were given a questionnaire to complete as particiated in focus group interviews. For the quantitative piece of the sutdy, the questionnaire used was the Knowledge of Artificial Nutrition and Hydration in the Terminally Ill (adapted from a Taiwan nurse).  Interpretation of the qualitative and quantitative data was conducted using a convergent parallel design.

Results: The mean age of the participants was 47 +/- 12.07 years and all of the participants were white. 12 out of 17 (71%) of the participants had an associates degree in nursing. 9 of the 17 participants (53%) had greater than 20 years experience as a registered nurse while 10 of them had 10 years or less experience in home health.  Internal consistency as measured by Cronbach’s a was 0.70. The mean total score of the Knowledge Test was 31.4 (SD=6.23, range 21-43). Only two questions had an accurate answer rate of 70% or above. Three themes generated from the focus group interviews resulted in The Triad: Suffering in Late Stage Dementia: patient/family comfort, futility, and symbols of suffering. These themes were compared to the quantitative data obtained from the Knowledge Test, which corroborated the qualitative analysis. 

Conclusion: This study revealed that HHNs’ knowledge is lacking in evidence-based practice information regarding ANH. Results of the mixed-methods design presented their knowledge and beliefs regarding ANH and suffering influences their guidance of patients and families toward initiation of ANH.