Background: Informal caregiving research focused on older adults has been prolific over the past twenty years. Yet, the dilemma of providing families and family caregivers with useful knowledge and support continues to exist. Methodological problems in sampling and design, lack of clarity in reporting and inconsistency of research findings leading to premature conclusions remain issues. Limited replication of positive findings related to interventions leaves the caregiver facing the same conflicts, stress, burden and demands despite extensive research.
Objective: The purpose of this study was to analyze informal caregiving research literature over the past twenty years in a two-stage process. The objective was to synthesize research findings and recommendations that would serve as the basis for identifying a relevant knowledge base for structuring appropriate interventions. In addition an effort was made to determine what essential knowledge emerged of most relevance for the caregiver.
Design: A combination of qualitative and quantitative approaches using content analysis and a descriptive design was employed using Procite and arcs. The study consists of two stages. Stage one is reported in this abstract. Stage two is focused on a comprehensive meta-analysis of a selected sample of articles related to intervention.
Sample: Procite, a software package developed for managing large data bases was used to conduct a comprehensive search of the literature from 1980 to 2001, resulting in identification of 658 articles related to the broad term of caregiving within Pub Med, the National Library of Medicine, public access data base. Articles related to caregiving of children and adolescents were deleted from the database, as were foreign language articles, which left approximately 555 articles. The sample of 555 articles was further divided into formal and informal caregiving articles resulting in a sample of approximately 300 articles reflective of informal caregiving in a community setting.
Methods: The remaining 300 articles were organized chronologically and then thematically analyzed in two-year periods to extrapolate key variables for entry into arcs, a knowledge base management system. Arcs allows the researcher to store, retrieve and model data about research studies. Further, arcs allows the researcher to graphically represent research studies by variable name and relationship, which was considered a graphical meta-analysis. Using graphical meta-analysis, exploration of two key variables gender and intervention were initially mapped in relation to the dependent variables identified within articles reviewed.
Findings: Two hundred thirty four of the 300 articles reviewed yielded 14 arbitrary categories that served as the basis for classifying variables. Fifty-eight of the articles dealt directly with measurement of informal caregiving related to specific diagnoses, 20 related to examining stress of the caregiver, 16 to role, 9 depression, 45 coping, 10 burnout, 16 chronic illness, 49 knowledge, 28 gender and 14 intervention. Graphical meta-analysis of the 14 intervention and 28 gender articles resulted in 32 and 46 dependent variables respectively. Efforts to use arcs for conceptual mapping yielded clear relationships between key variables in 14 of the articles that dealt directly with intervention and 28 articles in which gender was a variable of interest.
Conclusions: There is a breadth of caregiving research related articles especially related to gender; however, a continuing lack of replication and depth of caregiving research related to intervention persists. Although there were increasing numbers of studies across ethnic groups, variables for comparative analysis were not clearly specified. There is an inconsistency in design quality and general quality of the studies reviewed. The sample included comprehensive studies related to concepts such as coping, stress, and burden; however, intervention research using the findings from studies of these concepts was not clearly apparent.
Implications: This approach to systematic investigation of existing research provides a unique way of critically analyzing the quality and quantity of research in specific areas of informal caregiving. It can serve as a guide for synthesizing research findings and providing direction for future research and information related to more appropriate caregiving interventions. Such an integrative research review longitudinally may also open new ways of building knowledge bases for practice.
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