Journal of Pediatric Psychology, Vol. 27, No. 8, 2002, pp. 665-676
© 2002 Society of Pediatric Psychology
The Diabetes Social Support Questionnaire-Family Version: Evaluating Adolescents' Diabetes-Specific Support From Family Members
University of Miami
All correspondence should be sent to Annette M. La Greca, Department of Psychology, P. O. Box 249229, University of Miami, Coral Gables, Florida 33124. E-mail: alagreca{at}umiami.edu.
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Abstract |
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Objective: To develop and evaluate the Diabetes Social Support Questionnaire-Family Version (DSSQ-Family) for adolescents with type 1 diabetes.
Methods: Normative and individualized approaches to scoring were examined. Also examined were associations between diabetes-specific family support and adolescents' age, disease duration, gender, emotional support from family and friends, and treatment adherence. The most supportive family behaviors were identified as well. Adolescents (n = 74) rated 58 DSSQ-Family behaviors on their supportiveness and frequency and completed measures of emotional support from family and friends and treatment adherence. After eliminating nonsupportive items, the Total DSSQ-Family and five areas of diabetes care (insulin, blood testing, meals, exercise, emotions) were scored for frequency (normative approach) and frequency x support (individualized approach). The upper quartile of the DSSQ-Family items was identified as most supportive.
Results: Scores from the DSSQ-Family had high internal consistency. Higher frequency and individualized ratings were related to younger adolescent age and to more family emotional support and cohesion, but not to friend support or family conflict (in general). The individualized ratings were significant predictors of adolescents' adherence, even when controlling for age and general levels of family support. The most supportive family behaviors reflected emotional support for diabetes.
Conclusions: The DSSQ-Family is a useful clinical and research tool for measuring adolescents' perceptions of diabetes-specific family support. Future interventions should stress family support for management tasks, taking into account the adolescent's perceptions of supportive behaviors. Additional research is needed with culturally diverse adolescents and with other chronic pediatric conditions.
Key words: type 1 diabetes; adolescents; family; social support; adherence; friends.
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Introduction |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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Type 1 or insulin-dependent diabetes is a complex and challenging disease to manage, especially for adolescents, who have been found to be less adherent and in poorer metabolic control than preadolescent youths (e.g., Anderson, Auslander, Jung, Miller, & Santiago, 1990
; Anderson,
Miller, Auslander, & Santiago, 1981;
La Greca, Follansbee, & Skyler,
1990). Given that intensive self-management may be necessary to
prevent or forestall serious health complications (e.g., retinopathy, renal
disease) associated with diabetes (Diabetes
Control and Complications Trial, 1993), efforts to understand and
promote optimal self-management behaviors among adolescents are needed.
In this regard, family support for diabetes may be critical to adolescents'
disease management. Diabetes has been referred to as a "family
disease" (La Greca,
1998), as family members are involved in daily management tasks,
such as meal planning, well into youngsters' teenage years
(Follansbee, 1989;
La Greca et al., 1990).
Moreover, adolescents who have more supportive, cohesive families have been
found to have better metabolic control (e.g.,
Anderson et al., 1981), better
treatment adherence (La Greca et al.,
1995), and better psychosocial adaptation (Hanson, De Guire,
Schinkel, Henggeler, & Burghen, 1992; see also Burroughs, Harris, Pontius,
& Santiago, 1997).
Despite the importance of family support for adolescents' diabetes
management, little is known about the specific ways in which family members
provide support for adolescents' diabetes care. Such information would be
extremely useful for designing supportive family interventions for adolescents
with diabetes. In fact, a number of prominent pediatric researchers have noted
the dearth of effective family interventions for youths with chronic disease
(Drotar, 1997;
Kaslow et al., 1997;
Kazak, 1997).
Efforts to enhance family support for adolescents' diabetes care may be
facilitated by the development of tools that assess the specific ways that
family members provide support for diabetes. Along these lines, La Greca et
al. (1995) developed a
structured interview to assess family members' support for diabetes care, the
Diabetes Social Support Interview (DSSI-Family). Those authors found that
older adolescents reported less diabetes-specific support from their families
than younger adolescents and that family support for diabetes care was a
significant predictor of adolescents' treatment adherence. The results
highlighted the potential value of keeping families involved in adolescents'
diabetes care, even as adolescents mature.
Despite these positive findings using the DSSI-Family, a standard
questionnaire to assess family support for diabetes management may offer
several advantages relative to a structured interview. First, by providing a
list of supportive behaviors in questionnaire format, recall problems may be
minimized. In contrast, a structured interview (e.g., the DSSI-Family)
requires adolescents to generate the family behaviors they find to be
supportive and, thus, depends on adolescents' ability to recall supportive
behaviors. Second, scoring is substantially simplified with a standard
questionnaire, in comparison to the complex and time-consuming scoring for a
structured interview. Simplified scoring could be advantageous in pediatric
research when time is at a premium (La
Greca & Lemanek, 1996). Finally, the use of a standard set of
supportive family behaviors would also allow researchers to compare
adolescents' responses across pediatric samples and across informants (e.g.,
parent and adolescent) more readily than would be the case with a structured
interview and idiosyncratic adolescent responses.
Thus, the primary objective of this study was to develop and evaluate the
Diabetes Social Support Questionnaire-Family Version (DDSQ-Family), a
paper-and-pencil measure of perceived family support for adolescents' diabetes
care. Items were generated primarily from adolescent reports of supportive
family behaviors and reflect five key areas of diabetes management: insulin
administration, blood glucose testing, meals, exercise, and emotional support
(Chase, 1992). Four specific
goals were identified to aid in the development and evaluation of this
measure; they involved examining (1) scoring options, (2) construct validity,
(3) predictive validity (i.e., how well scores predict treatment adherence),
and (4) clinical utility (i.e., identifying the "most supportive"
behaviors as a guide to intervention).
Two scoring methods were examined for the DSSQ-Family: one based on a
normative approach to evaluating social support and the other based on an
individualized approach. Both methods have been used in prior research (e.g.,
La Greca et al., 1995;
Procidano & Heller, 1983),
although it was hypothesized that the individualized approach might be a
better predictor of adolescents' treatment adherence. Specifically, a
"normative" approach assumes that all items reflect supportive
behaviors; thus, only the frequencies of the behaviors are examined. An
"individualized" approach allows for individual interpretations of
each item's supportiveness; thus, the frequency of each item is
"adjusted for" its perceived supportiveness (i.e., frequency
x support). Although the individualized approach is more time-consuming
(i.e., two sets of ratings are obtained), there may be some benefit to
considering the individual's perception of what is supportive. Interviews have
shown that adolescents vary substantially in their perceptions of supportive
behaviors (La Greca et al.,
1995). Therefore, these two approaches to scoring the DSSQ-Family
were evaluated with respect to their internal consistencies,
intercorrelations, and associations with other measures.
To examine construct validity, associations between perceived family
support for diabetes care and demographic variables were evaluated. We
hypothesized that younger adolescents would report more support from their
families than older adolescents, as prior research has found family members to
be more involved in the diabetes management of younger adolescents
(Anderson et al., 1990;
La Greca et al., 1990). In
addition, associations between family support, disease duration, and gender
were examined, although no predictions were made. Previous work has found few,
if any, associations between family support for diabetes care and adolescents'
gender or disease duration (La Greca et
al., 1995).
The construct validity of the DSSQ-Family also was examined using other measures of support. We hypothesized that adolescents' perceptions of family support for diabetes care would be substantially and significantly related to their reports of general (i.e., non-disease-specific) family support and cohesion, but not to perceptions of emotional support from friends or to family conflict. Such patterns would provide support for the convergent and discriminant validity of the DSSQ-Family.
To examine predictive validity, we evaluated the DSSQ-Family as a predictor
of adolescents' treatment adherence. Based on prior research showing that more
supportive or cohesive families have adolescents with better adherence or
metabolic control (e.g., Anderson et al.,
1981; Hansen, Henggeler, & Burgen, 1987;
Hauser et al., 1990), we
hypothesized that higher levels of perceived family support for diabetes care
would predict better adherence. Moreover, as a stringent test of predictive
validity, we examined whether the DSSQ-Family would incrementally predict
adherence after first controlling for general levels of perceived
family support and cohesion. If the DSSQ-Family added significantly to the
prediction of adherence, it would support the incremental and predictive
validity of the DSSQ-Family and highlight the importance of family support for
adolescents' diabetes care.
Finally, to evaluate the clinical utility of the DSSQ-Family, we examined the specific family behaviors that adolescents perceived to be most supportive for their diabetes care. Identifying the "most supportive" behaviors could provide health care professionals and family members with concrete ideas regarding the kinds of family behaviors adolescents typically find useful and helpful. Thus, we examined the content of the most supportive items and also evaluated whether the frequency or individualized ratings for these "most supportive" items predicted adolescents' treatment adherence.
In summary, the primary objective of this study was to develop a questionnaire measure of perceived family support for diabetes care (DSSQ-Family). In evaluating the measure, the specific study goals were (1) to compare a normative and individualized approach to scoring; (2) to examine the concurrent validity of the DSSQ-Family, expecting that younger adolescents would report more perceived family support for diabetes care than older adolescents, but not expecting any differences as a function of disease duration or gender; the DSSQ-Family also was expected to be related to general measures of family support and cohesion, but not to measures of friend support or family conflict; (3) to examine the predictive validity of the DSSQ-Family, expecting that more perceived family support would be associated with better adherence, even when controlling for general levels of family support and cohesion; and (4) to identify the types of diabetes-specific family behaviors that adolescents perceived as most supportive for their diabetes care. The ultimate purpose of this line of research is to use the information for developing empirically supported family interventions for adolescents with diabetes.
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Method |
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Participants
Seventy-four adolescents (45 boys, 29 girls) with type 1 diabetes were interviewed during routine appointments for diabetes care at the pediatric endocrinology clinic of a large children's hospital in the Mid-west (also described in Bearman & La Greca, 2002
). Adolescents ranged from 11 to 18 years (M = 14.2
years, SD = 2.3 years), with a mean diabetes duration of 5.2 years
(SD = 3.5). The sample was 83.8% Caucasian, 10.8% African American,
and 4.4% other or mixed ethnicities. Most adolescents resided in two-parent
homes (78%); some came from single-parent families (12%) or had other living
arrangements (9%), such as a parent and an adult relative. The average
household size (including the adolescent) was 4.3 persons (range = 2 to 9;
median = 4), with an average of 2.05 adults (range = 1 to 5; median = 2) and
2.26 children (range = 1 to 7; median = 2). The sample was primarily lower to
upper middle class, with 1.8 adults (median = 2) employed outside the home,
and with an average family income of $49,400 (range = $7,900 to $200,000;
median = $40,000).
Procedure
All consecutive adolescents who received treatment for their diabetes over
a 4-month period (for routine check-ups or problems with diabetes) at a
children's hospital in the Midwest were invited to participate. Adolescents 11
to 18 years of age were recruited if they had had diabetes for at least 6
months and were accompanied by a parent or guardian who could provide informed
consent. Ninety percent of the eligible families agreed to participate, and
those who declined most commonly cited time constraints as the reason. Parents
and adolescents gave written consent prior to participation, and adolescents
were compensated $20.00 for their time.
Measures
Diabetes Social Support Questionnaire-Family Version. The
DSSQ-Family (copy available from first author) was developed to assess
adolescents' perceptions of family behaviors that are supportive for their
diabetes care (see Table I for
a list of the items.) The 58 items in the initial version were developed from
several sources, including focus interviews with adolescents, interviews with
health care providers, and prior research (e.g.,
La Greca et al., 1995). Items
reflected five key areas of diabetes care: insulin (10 items); blood
testing/reactions (14 items); meals (20 items); exercise (9 items); and
emotional support (5 items). Adolescents rated the frequency of each
behavior ("How often does a family member... ?"), with 0 = never,
1 = less than 2 times a month, 2 = twice a month, 3 = once a week, 4 = several
times a week, or 5 = at least once a day. The frequency ratings (1 to 5) were
identical to those used in the diabetes social support interview (DSSI-Family;
La Greca et al., 1995); a
rating of 0 (never) was added, in the event that the behavior never occurred.
Adolescents also provided ratings of supportiveness ("How does
this make you feel?"), with -1 = not supportive, 0 = neutral, 1 = a
little supportive, 2 = supportive, 3 = very supportive. The positive ratings
(1 to 3) were identical to those used in the DSSI-Family; nonsupportive (-1)
and neutral (0) ratings were added, as the questionnaire assessed a wide range
of family behaviors; not all of them may be viewed as supportive to
adolescents. (The DSSI-Family specifically asks the adolescent about
supportive behaviors, so that ratings of neutral or nonsupportive are not
necessary.)
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Based on prior research (e.g., La Greca
et al., 1995; Procidano &
Heller, 1983), two scoring methods were examined. One was based on
the frequency of the family behaviors (a normative approach), and one was
based on the frequency "adjusted for" the ratings of
supportiveness (i.e., frequency x support) (an individualized approach).
These scores were calculated for all the DSSQ-Family items (Total) and for the
five areas of diabetes care (see the Results section for scoring details.)
Perceived Social Support (PSS;
Procidano & Heller,
1983). The PSS assesses adolescents' perceived emotional
support from family (PSS-Family) and friends (PSS-Friends). Each subscale
contains 20 items answered in a "yes/no/don't know" format. Scores
can range from 0 to 20, with higher scores reflecting greater emotional
support. The PSS has been used with adolescents and adults who have diabetes
(La Greca et al., 1995;
Lyons, Perrotta, & Hancher-Kvam,
1988). Previous research supports the reliability and validity of
the instrument. Internal consistencies have ranged from .84 to .92 across
other samples (Lyons et al.,
1988). Emotional support from the family on the PSS-Family also
has been found to correlate significantly with diabetes-specific support from
family members (La Greca et al.,
1995). In this sample, the internal consistencies were .75 for the
PSS-Family and .77 for the PSS-Friends.
Family Environment Scale (FES; Moos
& Moos, 1986). The FES is a widely used instrument that
assesses family environment. It consists of 10 subscales, each with 9
true-false items; subscale scores can range from 0 to 9. The FES subscales
have adequate internal consistency (range from .61 to .78), and good
test-retest reliabilities over a 2-month period (.52 to .89)
(Moos & Moos, 1986). Due
to time constraints, only the Cohesion and Conflict subscales were used in
this study, as they were of most interest. In this sample, their internal
consistencies were .81 (Cohesion) and .74 (Conflict).
Adherence to Diabetes Care. Adherence was assessed using a
structured interview developed by Hanson et al.
(1987,
1992) that included multiple
aspects of diabetes care (insulin, glucose testing, meals, and treating
hypoglycemia). A total score (range = 0 to 41) was calculated, with higher
scores reflecting better adherence. Test-retest reliabilities over 3 and 6
months have been reported to be .70 and .73, respectively (Hanson et al.,
1987,
1992). Hanson et al. have
provided data on the validity of this measure for adolescents with diabetes;
in particular, higher levels of adherence have been significantly related to
metabolic control (Hb A1 assays), with correlations in the range of .30.
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Results |
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Scoring of the DSSQ-Family
The primary study objective was to develop and evaluate the DSSQ-Family. Prior to the main analyses, the 58 items were examined to determine their appropriateness for inclusion on the final questionnaire. Six items1 were eliminated because the majority of the adolescents (50% or more) rated them as nonsupportive (-1) or neutral (0). That is, most adolescents did not view these items as supportive. The remaining 52 items that were retained on the DSSQ-Family appear in Table I.
To examine a normative scoring approach, we calculated average frequency scores for the Total DSSQ-Family (all 52 items) and for the five areas of diabetes care (insulin, blood testing, meals, exercise, emotions). Scores could range from 0 to 5 (see Table I). To examine an individualized approach, for each adolescent, the frequency score for each item was multiplied by the corresponding supportiveness score (i.e., the frequency was "adjusted for" the item's perceived as supportiveness). Individualized scores (averages) were calculated for the Total DSSQ-Family and the five areas of diabetes care and could range from -5 (not supportive but very frequent) to 15 (very supportive and very frequent).
Psychometric Considerations
An initial study goal was to evaluate the two methods for scoring the
DSSQ-Family. Internal
consistencies2
(Cronbach's 
) were calculated. For the frequency ratings, internal
consistencies were .95 for Total, .75 for insulin, .85 for blood testing, .93
for meals, .85 for exercise, and .83 for emotions. Internal consistencies for
the individualized ratings were slightly higher: .98 for Total, .82 for
insulin, .91 for blood testing, .96 for meals, .89 for exercise, and .89 for
emotions.
Intercorrelations among the DSSQ-Family scores were examined next. Within the five areas of diabetes care, intercorrelations among the frequency ratings were moderate (range = .51 to .76; median = .57; all ps < .001). The intercorrelations among the individualized ratings were a bit higher (range = .62 to .85; median = .72; all ps < .001). The frequency ratings were highly correlated with the corresponding individualized rating (which was a combination of frequency and supportiveness); these correlations ranged from .75 to .91 (median = .84; all ps < .001). Similarly, the Total DSSQ-Family scores for the frequency and the individualized ratings were significantly interrelated (r = .88, p < .001).
Family Support on DSSQ-Family: Correspondence With Age, Disease
Duration, and Gender
A second study goal pertained to concurrent validity. The associations
between perceived family support for diabetes care and demographic variables
(age, disease duration, gender) were examined, but only age-related
differences in perceived family support for diabetes care were expected.
Pearson correlations were computed for age and disease duration with the
frequency and the individualized ratings on the DSSQ-Family (see
Table II). As expected, for the
Total score, younger adolescents reported receiving more frequent support from
family members for their diabetes care. In addition, for all five areas of
diabetes management, the frequency of family support was significantly related
to age, with younger adolescents perceiving more support than older
adolescents. Identical findings were obtained for the individualized ratings.
As expected, diabetes duration was unrelated to perceived family support.
Gender differences were evaluated using one-way analyses of variance (ANOVAs)
for each of the DSSQ-Family scores listed in
Table II (left side of the
table), using an alpha level of .05 to identify a significant difference. As
expected, none of the measures of family support differed significantly for
adolescent boys and girls. (The means for the total sample were reported in
Table I.)
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DSSQ-Family: Associations With Other Measures of Support
As another way of evaluating concurrent validity, the associations between
the DSSQ-Family and other measures of support from family and friends were
examined. We hypothesized that the DSSQ-Family would be related to the general
measures of family support (PSS-Family, FES-Cohesion), but not to friends'
support (PSS-Friends) or to family conflict (FES-Conflict).
In support of the concurrent validity of the DSSQ-Family, adolescents who reported more frequent family support for diabetes care viewed their families as more emotionally supportive (PSS-Family; r = .47, p < .001), and more cohesive (FES-Cohesion; r = .34, p < .01), than adolescents who reported less frequent family support (see Table II, right side.) This pattern was identical for the individualized ratings.
Similar results were obtained for the five areas of diabetes management. In general, adolescents who reported more frequent family support for the specific areas of diabetes care also viewed their families as more emotionally supportive and more cohesive. The one exception to this pattern was that family support for exercise was not significantly related to family cohesion (r = .18), although the correlation was in the same direction as the others. An identical pattern was observed for the individualized ratings. Thus, regardless of whether the frequency or individualized ratings were used, more emotionally supportive and cohesive families were perceived as providing more diabetes-specific family support.
In support of the discriminant validity of the DSSQ-Family, none of the frequency or individualized ratings was related to support from friends (PSS-Friends) or to family conflict (FES-conflict). The only exception was that perceptions of emotional support for diabetes care were negatively related to family conflict. Specifically, adolescents who reported less emotional support for diabetes care (using either the frequency or individualized ratings) perceived their families as more conflictual (rs = -.20, -.24, respectively) than did adolescents who reported more emotional support for their diabetes care.
DSSQ-Family: Predicting Adolescents' Treatment Adherence
A third study goal was to examine the predictive validity of the
DSSQ-Family, hypothesizing that greater perceived family support for
adolescents' diabetes care would predict better adherence, even when
controlling for general levels of families' emotional support. Two
hierarchical regression analyses were conducted (see
Table III), with adherence as
the dependent variable, and using either the Total frequency ratings or the
Total individualized ratings as predictors. On the first step, adolescent age
was entered, because younger adolescents were more adherent than older
adolescents (r = -.24, p < .05). On the second step,
family support and cohesion (PSS-Family and FES-Cohesion) were entered to
control for general levels of family support and cohesion and to determine if
more supportive, cohesive families had more adherent adolescents. In the third
step, the diabetes-specific support scores were entered.
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Table III shows that younger adolescents had better adherence (Step 1), as did adolescents who perceived their families as more cohesive (Step 2). Together, these two sets of variables predicted 16% of the variance in adolescents' adherence. Interestingly, family cohesion (partial r = .32), but not general family support (partial r = .11), was related to adherence. On the third step (first analysis), the Total frequency score from the DSSQ-Family was not a significant predictor of adolescents' treatment adherence; however, the Total individualized score (second analysis) predicted 6% additional variance (p < .025). Adolescents with greater perceived family support for diabetes care reported better adherence.
As a follow-up to this analysis, the regression was repeated with the individualized ratings for the five areas of diabetes management entered on the third step; this set predicted 17% additional unique variance in adolescents' adherence, Fchange = 3.29, p < .01, for a total R2 of .33. Partial correlations (controlling for age, family support, and cohesion) indicated that greater family support for insulin administration (.24, p < .05), blood glucose testing (.32, p < .01), and meals (.28, p < .05) primarily contributed to this effect, suggesting that family support for daily management tasks may be more closely related to adolescents' adherence than family support for exercise or emotions.
Analysis of the Most Supportive Family Behaviors
A final study goal was to examine the clinical utility of the DSSQ-Family
by identifying the specific family behaviors that adolescents perceived as
most supportive for their diabetes care. The "most supportive"
behaviors were defined as those in the upper quartile (25%) of the DSSQ-Family
items, based on supportiveness ratings. These 13 items are marked in
Table I with a
superscripta.
The mean perceived supportiveness of the 13 items was 1.91 (SD=.88) and was significantly higher than for the remaining 39 items on the DSSQ-Family (M = 1.35, SD =.93; t = 7.52, p < .0001). Included in the most supportive behaviors were 60% of the items that dealt with emotional support (e.g., "are available to listen to your concerns about diabetes"); this area of diabetes care was overrepresented in the upper quartile. Also among the most supportive items were 30% of the items that dealt with meals ("cook meals that fit your meal plan," "eat at the same time you do"), and 25% of the items that dealt with blood glucose testing ("help out when you might be having a reaction," "make sure you have materials needed for testing"). Underrepresented among the most supportive items were those dealing with insulin (12.5%) ("wake you up so you can take your shot on time") or exercise (0%).
Across the 13 most supportive items, an average frequency score and an average individualized score were calculated. Their internal consistencies were .83 and .92, respectively. Regression analyses (identical to those described) were conducted for the 13 most supportive items as predictors of adolescents' adherence. As with the Total DSSQ-Family, in Step 3, the frequency of the most supportive items did not predict adherence (partial r = .12, controlling for age, family support, and cohesion), but the individualized rating did significantly predicted 6% unique variance (partial r = .25, p < .035).3
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Discussion |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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Little research has examined the specific family behaviors associated with youngsters' disease management (Drotar, 1997
), even though families play an important role in disease
management and adaptation for youths with chronic pediatric conditions. Thus,
information on family behaviors that relate to better treatment adherence for
adolescents with diabetes has the potential to inform the next generation of
family interventions for youths with diabetes. In this regard, this study
presents a new measure and provides useful information on the family behaviors
that adolescents perceived to be supportive for their diabetes care. This
information may be useful for enhancing adolescents' treatment adherence.
The primary study objective was to develop and examine the utility of a new
measure, the DSSQ-Family, to assess adolescents' perceptions of family support
for diabetes care. The results provided promising support for this measure. In
particular, internal consistencies for the various DSSQ-Family scores were
high, and the patterns of relationships with other measures were consistent
with predictions. The results also provided support for the incremental and
predictive validity of the individualized ratings from the DSSQ-Family, which
predicted adolescents' adherence above and beyond general levels of family
emotional support and cohesion. One important clinical implication of these
findings is that the DSSQ-Family appears to be a useful measure of perceived
family support for adolescents' diabetes care. Drotar
(1997) has recommended that
future research on family functioning among youths with chronic pediatric
conditions make "greater use of illness-specific measures involving
family variables" (p. 161). In this regard, the DSSQ-Family may be
useful to include in future studies of adaptation and disease management for
youths with diabetes.
In the process of evaluating the DSSQ-Family, two different scoring methods were examined: one based on a normative approach that utilizes frequency ratings for supportive behaviors, and one based on an individualized approach that adjusts the frequency ratings for the individual adolescents' perceptions of supportiveness. Although the findings were very similar for the two methods, the results appeared to favor the individualized ratings. Their advantage was most clearly observed in the analyses of adolescents' treatment adherence where the individualized scores, but not the normative/frequency scores, predicted adolescents' adherence, even when only the 13 "most supportive" items from the DSSQ-Family were used. These findings suggest that the individualized approach may be more useful than the normative approach in clinical settings. In particular, efforts to increase family support for adolescents' diabetes care may be better served by including adolescents' own perspectives on what they view as supportive, rather than relying on what adolescents typically view as supportive.
Another key finding from this study, supporting the concurrent validity of
the DSSQ-Family, was that older adolescents perceived their family members to
provide less diabetes-specific support than did younger adolescents. Others
(e.g., Anderson et al., 1990;
Follansbee, 1989) have
expressed concern that, as adolescents get older, family members become less
involved in and supportive of their diabetes care. One of the potential
benefits of a measure such as the DSSQ-Family is that it may be used to
identify family behaviors that adolescents do find to be supportive,
so that family members can provide appropriate kinds of support and maintain
involvement in diabetes care as adolescents mature.
In contrast to the findings for age, disease duration was not related to perceived family support for diabetes care. Thus, the relationship between age and perceived family support cannot be explained by the fact that younger adolescents typically have had diabetes for a shorter period of time and, therefore, need more assistance with their diabetes care.
In further support of the concurrent validity of the DSSQ-Family, the results revealed that adolescents who perceived their families as providing more diabetes-specific support also viewed their families as more cohesive and emotionally supportive. In contrast, adolescents' perceptions of family support for diabetes care were not related to adolescents' support from friends or to reports of family conflict, in general. Although further replication of these findings would be desirable, these data do provide good preliminary support for the convergent and discriminant validity of the DSSQ-Family.
Furthermore, from a clinical perspective, it was interesting to note that the correlations between diabetes-specific family support and general family support and cohesion were moderate (.23 to .49). This suggests that even cohesive, emotionally supportive families do not necessarily provide high levels of diabetes-specific support. This was especially true for family support for adolescents' exercise, which was unrelated to family cohesion. A clinical implication of these findings is that even supportive, cohesive families may need help in identifying specific ways to support adolescents' diabetes care.
With respect to the predictive and incremental validity of the DSSQ-Family,
a key finding was that the individualized ratings from the DSSQ-Family
predicted adherence above and beyond the more generic measures of family
support and cohesion. In fact, the general measure of family support was not
significantly related to adherence, when adolescent age was controlled.
Pediatric investigators have emphasized that disease-specific measures may be
helpful in understanding youngsters' disease management and disease adaptation
(e.g., Drotar, 1997;
La Greca & Lemanek, 1996),
and these findings are consistent with this point. Furthermore, the specific
areas of diabetes-related family support that were most associated
with adolescents' adherence involved daily management tasks (meals, glucose
testing, and insulin administration), rather than exercise or emotions.
Although family members' support of management tasks may be important for
adherence, their provision of emotional support may also be critical. In this
study, families' support for the emotional aspects of diabetes care was
unrelated to adherence, but this does not rule out the possibility that it may
be associated with other indices of disease adaptation, such as adolescents'
quality of life (Grey, Boland, Yu,
Sullivan-Bolyai, & Tamborlane, 1998) or self-esteem
(Varni, Babani, Wallander, Roe, &
Frasier, 1989). Moreover, family members' emotional support may
help to prevent or minimize feelings of depression, which appear to be high
among individuals with diabetes (Anderson,
Freedland, Clouse, & Lustman, 2001). Most of the emotional
support items from the DSSQ-Family were among those viewed as "most
supportive" by the adolescents. In the future, it may be fruitful to
examine linkages between families' emotional support for diabetes and other
indices of disease adaptation and adjustment.
Although our findings were promising, continued study of the DSSQ-Family is
desirable. In particular, several study limitations suggest directions for
further investigation. First, in this study it was not possible to obtain
retest reliability for the DSSQ-Family, and this will be important in future
work. Second, and also important for future research, would be a replication
of the study results with a larger sample, especially one that has sufficient
power to factor analyze the DSSQ-Family. Third, this study relied on
adolescents' reports of family support and treatment adherence. Adolescents'
are considered to be the "best" informants for evaluating their
social support and their daily treatment adherence (e.g.,
La Greca & Lemanek, 1996);
in addition, the pattern of findings cannot be explained solely by shared
informant variance (e.g., family support for diabetes was related to family
support, but not to friend support). Nevertheless, in future studies it will
be desirable to evaluate support and adherence from multiple perspectives
(e.g., adolescent and parent), and to incorporate other objective measures of
disease status, such as hemoglobin assays, in addition to measures of
adherence. Fourth, this study focused on a primarily middle-class sample, with
a relatively small number of minority youths, and thus can best be generalized
to similar groups of adolescents. In the future, work on the DSSQ-Family
should be extended to multiethnic, low-income adolescents with diabetes. One
advantage of a checklist measure, such as the DSSQ-Family, is that it may
facilitate comparisons across different ethnic groups because of its standard
set of items. Finally, this study focused on a particular chronic disease,
although it is likely that the finding might be applicable to other chronic
conditions for which medications, exercise, or meal management play a role.
Future studies may wish to adapt the DSSQ-Family for other chronic pediatric
conditions.
In conclusion, this study offers the DSSQ-Family as a useful instrument for understanding family members' support of adolescents' diabetes care. An important clinical implication is that continued family involvement in the day-to-day management of diabetes may be critical for youngsters' disease management. At least when the goal of intervention is to promote treatment adherence, it may be most productive to focus on ways that families can support daily management tasks, taking into account what the individual adolescent perceives to be supportive in these areas. This may be especially critical for older adolescents, as families are substantially less likely to be supportive of older teens' management tasks, as the data in this study have shown. The key issue is not whether families should be involved and supportive, but how best to do this, especially as adolescents' mature.
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Acknowledgments |
|---|
Preparation of this paper was supported, in part, by grants from the National Heart, Lung, and Blood Institute (HL 36588) and the National Institute of Child Health and Development (T32 HD07510). We thank the following individuals for their input on the initial development of the DSSQ-Family: Edwin Fisher, Jr., Wendy Auslander, Peggy Greco, and Dante Spetter.
|
Notes |
|---|
1 The six items eliminated from the questionnaire focused mainly on nagging. These items were "Nag you about your shots," "Get on your case about taking insulin, after you were late or forgot," "Nag you until you do your testing," "Remind you to test urine for ketones," "Get on your case when you haven't exercised," and "Bug you about exercising." The mean rating of supportiveness for each of these six items fell below 1.00 (a little supportive).
2 Although it was not possible to evaluate test-retest reliability in this
study, data obtained over a 2-week period for a sample of 25 adolescents,
using the Friends version of the DSSQ, yielded the following results. For the
frequency ratings, retest reliabilities were .89 for the Total, .87 for
insulin, .92 for blood testing, .93 for meals, .85 for exercise, and .90 for
emotions. For the individualized ratings, retest reliabilities were .94 for
the Total, .85 for insulin, .84 for blood testing, .82 for meals, .78 for
exercise, and .88 for emotions. All were significant at p <
.001.
3 The patterns of correlations for the frequency and individualized ratings
for the 13 "most supportive" items were identical to those for the
Total DSSQ-Family items. Specifically, the frequency of the most supportive
items correlated with other variables as follows: age (r = -.44,
p < .001), diabetes duration (r = -.09, ns),
PSS-Family (r = .48, p < .001), PSS-Friend (r =
.02, ns), cohesion (r = .38, p < .01), and
conflict (r = -.12, ns). For the individualized ratings the
correlations were age (r = -.33, p < .001), diabetes
duration (r = -.04, ns), PSS-Family (r = .44,
p < .001), PSS-Friend (r = .01, ns), cohesion
(r = .29, p < .05), and conflict (r = -.14,
ns).
Received July 16, 2001; revision received November 15, 2001; revision received February 25, 2002; accepted March 1, 2002
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