This research project, 'Values of Families in Guiding End-of-Life Care,' will collect new pilot data on end-of-life decision-making in long-term care settings. This research will provide data for the design of larger studies on the values of patients and families and how these values affect end-of-life decisions.
Specific Aims :
The specific aims of this study are (1) to explore the goals, beliefs and values used by family members in making decisions on behalf of cognitively impaired, institutionalized elders near the end of life; (2) to identify those values that are invoked most consistently across and within focus groups; and (3) to identify commonalties and differences between the values invoked by families in rural and urban counties in Minnesota. Methods: Focus groups will be convened in six nursing homes: three in rural counties and three in urban counties. Participants will be family members of elders with severe cognitive impairment, as defined by data in Minimum Data Set reports. A moderator will guide the focus groups from a discussion of broad issues, including caregiving, end-of-life care, and decision-making, to a more focused discussion of goals and values. The focus group sessions will be recorded and transcribed; transcripts will be proofed against field notes. Final transcripts will be read and coded by each of the three investigators independently; differences in coding will be reconciled in face to face meetings. Data collection and analysis will be simultaneous and continuous. Categories and themes will be identified as they emerge from the data. Group-to-group validation will be used to identify consistency of themes across and within focus groups. Significance: Values are not the same as preferences. Values are more stable and are applicable to a wider range of decisions, including unanticipated decisions. This research will lay the groundwork for two future studies: a survey of values in end-of-life decision-making, and an in depth examination of the role of selected values in decision-making.
| Elliott, Barbara A; Gessert, Charles E; Peden-McAlpine, Cynthia (2009) Family decision-making in advanced dementia: narrative and ethics. Scand J Caring Sci 23:251-8 |
| Elliott, Barbara A; Gessert, Charles E; Peden-McAlpine, Cynthia (2007) Decision making by families of older adults with advanced cognitive impairment: spirituality and meaning. J Gerontol Nurs 33:49-55 |
| Gessert, Charles E; Elliott, Barbara A; Peden-McAlpine, Cynthia (2006) Family decision-making for nursing home residents with dementia: rural-urban differences. J Rural Health 22:1-8 |
