Journal of Pediatric Psychology, Vol. 27, No. 8, 2002, pp. 759-764
© 2002 Society of Pediatric Psychology
Brief Report: Self-Care Behaviors of Children With Type 1 Diabetes Living in Puerto Rico
1 Children's National Medical Center, 2 Houston School System, 3 Tulane University, 4 University of Puerto Rico Medical School, 5 Georgetown University, 6 Virginia Commonwealth University
All correspondence should be sent to Randi Streisand, Children's National Medical Center, Department of Psychology, 111 Michigan Ave. NW, Washington, District of Columbia 20010. E-mail: rstreis{at}cnmc.org.
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Abstract |
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Objective: To examine self-care behaviors among children and adolescents with type 1 diabetes living in Puerto Rico, to determine the relationship between self-care and demographic variables, and to investigate the utility of the 24-hour recall interview within a Hispanic population.
Method: Forty-one children (M age = 12.6 years) with type 1 diabetes, and their mothers, were administered the 24-hour recall interview on three separate occasions to assess diabetes-related self-care behaviors.
Results: Children reported self-care behaviors that included daily administration of an average of two insulin injections and two blood glucose tests, and consumption of 5.5 meals a day comprised of 52% carbohydrates and 29% fat. Younger age, female gender, longer illness duration, and better metabolic control were associated with higher rates of several self-care behaviors.
Conclusions: Data provide a first look at self-care behaviors of children with type 1 diabetes living in Puerto Rico and suggest the utility of the 24-hour recall interview within this population.
Key words: type 1 diabetes; self-care; Puerto Rico.
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Introduction |
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Various investigations have examined potential predictors of self-care behaviors to elucidate how best to promote adherence in children with diabetes. The vast majority of these investigations, however, have focused on Caucasian children within the United States. Significantly fewer data are available on children of other ethnicities or from different cultures. This is of concern because ethnicity is one variable hypothesized to play a role in adherence behaviors. For example, Delamater, Albrecht, Postellon, and Gutai (1991
) examined the effects of
ethnicity on metabolic control and found that after controlling for other
factors (illness duration, socioeconomic status [SES]), African American
children had poorer metabolic control, more hospitalizations, and more missed
clinic visits than Caucasian children. Other studies examining the role of
ethnicity in diabetes management within the United States have also found
varied rates of morbidity and mortality in ethnic minorities (non-Hispanic
Black, Hispanic; Lipton, Good, Mikhailov,
Freels, & Donoghue, 1999).
According to the Puerto Rico Juvenile Diabetes Registry (1995), type 1
diabetes is the third leading cause of death in Puerto Rico, as compared to
the seventh leading cause of death in the United States. This high mortality
rate suggests that diabetes may be poorly managed in Puerto Rico; however,
there are no studies examining self-care behaviors related to the management
of diabetes in children or adults living there. In addition to regimen
complexity, environmental influences may also serve as barriers to regimen
adherence (Glasgow et al.,
1989) and to utilization of general medical care in Puerto Rico
(Guendelman, 1985). For
example, according to U.S. census data from 1990, 55.3% of all families in
Puerto Rico live below the poverty level, the majority of whom receive health
care through the Puerto Rico Commonwealth Department of Public Health
(Santiago-Borrero & Valcarcel,
1994).
This study provides a first look at how Hispanic children living within
Puerto Rico manage diabetes, despite sociodemographic and financial
challenges. Specific aims of the study were twofold: (1) to document self-care
behaviors of children with type 1 diabetes living in Puerto Rico using the
24-hour recall interview, and (2) to identify potential demographic predictors
of self-care behavior within this population. We were specifically interested
in examining the relationship between self-care behavior and age, gender,
illness duration, and metabolic control, given that these variables have been
previously associated with self-care behaviors in samples from the United
States (Auslander, Anderson, Bubb, Jung,
& Santiago, 1990; Johnson,
Freund, Silverstein, Hansen, & Malone, 1990;
Overstreet et al., 1995).
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Method |
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Participants
Participants included 41 children with type 1 diabetes being followed by the Department of Pediatrics at the University of Puerto Rico Hospital (23 boys, 18 girls; M age = 12.6 years, SD = 2.9), and their mothers. Medical visits were covered by public insurance for 33 (80.5%) children and by private insurance for 8 (19.5%) children. All children were at least 6 months postdiagnosis (disease duration M = 4.7 years, SD = 3.6), free of secondary disease complications as determined by clinical exam (i.e., absence of retinopathy, neuropathy, etc.), and without any other major medical illnesses. Thirty-eight participants (93%) received two insulin injections daily, and three participants (7%) received one injection daily; no fast-acting insulin was prescribed. Access to medical records was limited, and metabolic control information was therefore only available from the medical records of a subset of 24 children; the mean HbA1c was 10.5% (SD = 4.8). Children for whom medical information was obtained did not differ from those without such information in age, gender, or insurance distribution.
Procedure
For a 12-month period (1995-1996), potential participants were approached
during their regular clinic appointments, and informed consent was obtained
from the parent and assent from the child. Parents completed a brief
demographic and medical form, and parents and children were then administered
the 24-hour recall interview (Johnson,
Silverstein, Rosenbloom, Carter, & Cunningham, 1986;
Johnson, Tomer, Cunningham, &
Henretta, 1990), separately, in order to assess children's
self-care behaviors. Consistent with the method outlined by Johnson et al.
(1986), children and mothers
in this study completed a total of three interviews, with the second and third
interviews conducted via telephone.
All interviews were conducted in Spanish by trained nonmedical research assistants who were not associated with the hospital staff. Consistent with the English version of the recall interview, the respondent was asked, in an open-ended fashion, to recall the previous day's activities in temporal sequence, starting with waking up and ending with going to sleep at night. If the respondent did not spontaneously offer relevant information, such as time of insulin injection, the interviewer prompted with questions.
Self-Care Behaviors
Summaries of raw scores for each self-care behavior were computed. Next,
standard deviations across the three interviews were calculated based on
Johnson et al.'s (1986)
technique, with higher scores indicating more variation or poorer self-care
behavior. Similar to Johnson's work, we relied on standard recommendations of
care, or ideal self-care behavior, for the time period around data collection
(1995-1996). Recommendations of the American Diabetes Association (ADA) were
used, given that there are no separate standards for Puerto Rico. Self-care
behaviors across the following four domains were assessed: injections,
exercise, blood glucose monitoring, and nutrition.
Data Analysis Plan. To document the self-care behaviors of
children in Puerto Rico, we first combined parent and child scores to yield
one averaged score for each self-care behavior. If data were available for
both respondents, discrepancies were handled according to the procedure
outlined by Johnson et al.
(1986). We also examined
parent-child concordance rates by computing correlation coefficients between
parent and child data. To address our second objective of identifying
variables associated with self-care behaviors, we conducted correlational
analyses between age, gender, disease duration, metabolic control, and all
self-care behaviors.
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Results |
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Descriptive Information for Self-Care Behaviors
Descriptive data for self-care variables are presented in Table I.
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Injection Behaviors. Children from our sample were fairly consistent in the timing of their injections each day, varying only 35.8 minutes across days. Although they were also fairly consistent in the timing of their injections before meals, children tended to receive their injections much closer to meals (7.4 minutes before) than recommended by the ADA for use with Regular insulin (30-60 minutes prior to eating; Nuttal & Brunzall, 1979).
Nutrition Measures. Children from Puerto Rico reported eating 5.5
meals per day and consumed 52% of calories from carbohydrates and 29% of
calories from fat. Reports of nutrition fell within the ADA's recommended
distribution of caloric intake of 50%-70% carbohydrates and not more than
20%-30% from fats (American Diabetes
Association, 1996).
Exercise Measures. Children exercised only once per day, on average, for approximately 18 minutes.
Blood Glucose Testing Frequency. Children from our sample reported testing their blood glucose two times per day, on average.
Concordance Between Parent-Child Report
Pearson product-moment correlations were computed between parent and child
report for self-care behaviors. Eight of the 11 correlations were
statistically significant (p < .01), ranging from r = .41
(injection regularity) to r = .88 (injection-meal timing), similar to
the range reported by Johnson et al.
(1986). Child and parent
agreement was moderate for injection interval (r = .30, p =
.059) and poor for frequency of eating and blood glucose testing (all
ps > .5).
Relationship Between Demographic Variables and Self-Care
Behavior
To examine the second aim of our study, we investigated the relationship
between demographic/illness variables (e.g., age, gender, disease duration,
and metabolic control: HbA1c) and self-care behavior. We computed
correlational analyses to determine which variables were significantly related
to self-care behaviors; results are presented in
Table II. Age was significantly
associated with eating frequency (r = .33, p < .05),
indicating that older children ate fewer times throughout the day. Illness
duration was negatively correlated with eating (r = -.57, p
< .05) and blood glucose testing frequency (r = -.57, p
< .05), with longer illness duration associated with higher frequencies of
eating and blood glucose testing.
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Metabolic control (HbA1c) was positively correlated with two exercise measures: exercise duration (r = .41, p < .05) and exercise frequency (r = .48, p < .05). That is, children in poorer metabolic control exercised less often and for shorter periods of time. Gender was significantly associated with multiple self-care variables, including injection, diet, and exercise measures. Specifically, girls were more consistent than boys in the timing of their injections from day to day and in the timing of their injections in relation to meals. Girls also ate less fat and more carbohydrates than boys. In addition, girls reported exercising for shorter periods of time than boys.
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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This study provides the first examination of the self-care behaviors of children with type 1 diabetes living in Puerto Rico. Results are based on an assessment tool (24-hour recall interview) standardized on primarily Caucasian children living within the main-land United States (Johnson, 1986; Johnson, Tomer, Cunningham, & Henretta, 1990
) and indicate the utility of using such a measure
within a different culture. The 24-hour recall interview was easily translated
into Spanish, and self-care behaviors included in the recall interview appear
appropriate for use in children living in Puerto Rico.
To satisfy the study's first aim, we provided descriptive data on self-care
variables across eating, injection, blood glucose testing, and exercise
behaviors. Overall, results indicate that despite the poor economic conditions
in Puerto Rico, children engaged in relatively good self-care. This finding
may in part be explained by cultural influences. That is, Latino families tend
to be very family-oriented, displaying much love and loyalty among family
members (Ponce, 1995;
Ruiz, 1981). Parents are
particularly dedicated to their families, and children, in turn, appear to
show their gratitude by submitting to family rules
(Canino & Spurlock, 1994).
Although parental standards were not assessed in this study, parental
expectations and children's desire to meet these expectations may have
influenced the overall positive levels of self-care behaviors found in our
sample of children. In fact, parental involvement has been shown to relate to
increased adherence behaviors, particularly blood glucose monitoring, and
lowered HbA1c levels in adolescents
(Anderson, Ho, Brackett, Finkelstein, &
Laffel, 1997).
Additional support for using the recall interview within a Hispanic
population was found in examining concordance rates between parents and
children. Similar to the United States standardization sample
(Johnson et al., 1986),
self-report data of children and their parents in Puerto Rico were found to be
relatively consistent with one another.
In examining the second aim of our study, sociodemographic and illness
variables were correlated with several individual self-care behaviors. In
contrast to Grey, Lipman, Cameron, and Thurber
(1995), our findings were
consistent with other studies that have failed to find a strong relationship
between illness duration and self-care behaviors
(Johnson et al., 1992). In
fact, children with longer illness duration performed more blood glucose tests
and ate more frequently during the day than those children who had had
diabetes for a shorter period of time.
As in the literature in other cultures, gender of children in our sample
was related to a number of self-care behaviors. Girls were found to be more
consistent in injection timing and in waiting more minutes after injections,
prior to eating, than boys. Perhaps girls in Puerto Rico, like those in the
United States (Kovacs, Iyengar, Goldston,
Obrosky, & Marsh, 1990), are somewhat anxious and more
concerned about their illness than boys, and subsequently more careful about
maintaining proper injection habits so that they feel a sense of control over
their illness. Also consistent with the United States literature on gender
differences (Johnson et al.,
1986), boys in this study exercised for longer periods of time
than girls.
It was surprising that age was not found to be a powerful predictor of
self-care behaviors. Based on previous research with U.S. samples
(Johnson, Tomer, et al., 1990;
Johnson et al., 1986;
Johnson et al., 1992), we
expected that as children got older, they would deviate more from their
diabetes regimen due to the assumed disruptive influence of adolescence on
diabetes care (Tattersall & Lowe,
1981). This was only evident for eating frequency, with older
children eating less often during the day than younger children; age was not
associated with other self-care behaviors.
While this study offers much information regarding self-care behaviors
within a culture outside of the United States, findings must be considered
preliminary and within the context of study limitations. Perhaps the biggest
limitation of this study is the small sample size. A larger sample would have
provided additional descriptive data on adherence behaviors, increasing the
generalizability of findings to other children living within Puerto Rico. This
study was also limited by its focused assessment of self-care behaviors and a
relative lack of additional demographic, medical, or psychosocial variables.
For example, while we were able to collect medical data for several of the
participants, our results were limited, given that roughly half of the study
sample's medical data (illness duration and HbA1C) were unavailable for
analyses. Furthermore, this study did not include an assessment of SES, which
may have been related to children's self-care behaviors
(Glasgow et al., 1989).
Finally, as with many investigations of self-care behaviors, our study is
limited in that we did not obtain assessments of children's specific provider
recommendations and instead relied on standards of care to calculate summary
scores (American Diabetes Association,
1996; Johnson et al.,
1986).
Despite study limitations, findings have several implications both clinically and in research. As noted previously, results support the use of the recall interview with children living in Puerto Rico, providing researchers and clinicians alike with a reliable assessment tool for measuring self-care behaviors within this population. Future research in this area, both within Puerto Rico and other cultures, should include determining physicians' regimen standards and expectations so that actual adherence rates can be investigated.
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Acknowledgments |
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We thank the families who participated in this project, as well as Medisense for providing participants with glucose pens and test strips.
Received September 20, 2001; revision received February 8, 2002; accepted March 18, 2002
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