A Phase Model for Family Caregiving: Evidence From Internet Support Groups Wayne Caron, Ph.D., L.M.F.T. Poster presented at the Alzheimer's Association International Conference on Prevention of Dementia: Early Diagnosis and Intervention. July 19th, 2005. Washington. D.C.
Background: Family systems models of stress and coping emphasize dynamic interaction between the family as a unit and the unique challenges faced. Applying systems concepts to dementia caregiving suggests that families face a series of dilemmas that challenge the basic organization of the system. A seven-phase model based upon these concepts has previously been proposed for organizing dementia care services. The model needs further research validation;
Objective: This presentation reports data from content of analysis of internet support group postings to identify messages dealing with each of seven phases and compare these for signs of emotional distress.
Method: 1500 consecutive emails messages sent to two dementia care support listservs are examined. These are coded for themes associated with the seven phase family caregiving model: Prediagnosis; Diagnosis; Role Changes; Chronic Care; Shared Care; Long Term Care; and End of Life. Emails were computer content analyzed using the Gottschalk/ Glesser Scales for phrases indicating Depression; Anxiety; Hostility; Relationship Quality and Quality of Life. The Gottschalk/ Glesser scales have established validity in measuring emotional status from text.
Conclusions: Approximately half of caregiving related emails could be reliably coded into one of the seven phases. Posts most frequently dealt with Diagnosis, Chronic Care, Shared Care, Long Term Care and End of Life issues. Greatest level of emotional distress was found in the beginning phases (Diagnosis, Role Changes, Chronic Care) and end phase (End of Life) with decreased distress seen in Shared Care and Long Term Care phases. Implications for intervention and theory are presented.
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