Measuring processes of care-giving: Studying the components of care in a replication study with two clinic-based populations of children with chronic illness

Investigators & StaffS Baine
P Rosenbaum
S King

Funding Agency

Farquharson Medical Research Council Scholarship - $3,600 (1992)

Summary

This study was conducted to examine parents' values about a variety of aspects of care and services for children with chronic illnesses. It was also designed to compare these findings to data previously obtained from parents of children with neurodevelopmental disabilities.

Parents of children with diabetes mellitus (n=80) and cystic fibrosis (n=45) attending regional university-affiliated tertiary clinics were asked to complete a mailed questionnaire. In this two-part questionnaire, parents (a) rated independently each of 22 components of care (COC), and (b) ranked the COCs using a modified Q-sort technique. The majority of COCs were judged to be very important by over 75% of respondents. Components ranked highest by parents of both groups of children included Diagnosis, Treatment, Education/Information, Continuity/ Consistency, Accessible and Available Care, Evaluation of Chronic Illness, and Parental Involvement (Spearman rank coefficient r = 0.92, p < 0.001). Concordance between this "medical" group and a previously studied "neurodevelopmental" group was r = 0.72 (p < 0.001).

For more information on this topic, refer to:

Baine, S., Rosenbaum, P., & King, S. (1995). Chronic childhood illnesses: What aspects of caregiving do parents value? Child: Care, Health and Development, 21, 291-304.

Impact

These results have important implications for the delivery of care and services so as to prevent mental health problems.