Development of the Diabetes Family Adherence Measure (D–FAM)

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Development of the Diabetes Family Adherence Measure (D-FAM)Adam B. Lewin ab; Gary R. Geffken c; Laura B. Williams d; Danny C. Duke e; Eric A. Storch f; Janet H.Silverstein g

a Department of Pediatrics, University of South Florida College of Medicine, Rothman Center forNeuropsychiatry, St. Petersburg, FL b Department of Psychiatry & Biobehavioral Sciences, SemelInstitute for Neuroscience and Human Behavior, University of California Los Angeles, Los Angeles,CA c Departments of Psychiatry, Pediatrics, and Clinical & Health Psychology, University of Florida,Gainesville, FL d Department of Pediatrics, University of South Florida, Tampa, FL e ChildDevelopment and Rehabilitation Center, Oregon Health & Science University, Portland, OR f

Department of Pediatrics, University of South Florida, St. Petersburg, FL g Department of Pediatrics,University of Florida, Gainesville, FL

Online publication date: 21 January 2010

To cite this Article Lewin, Adam B., Geffken, Gary R., Williams, Laura B., Duke, Danny C., Storch, Eric A. and Silverstein,Janet H.(2010) 'Development of the Diabetes Family Adherence Measure (D-FAM)', Children's Health Care, 39: 1, 15 —33To link to this Article: DOI: 10.1080/02739610903455111URL: http://dx.doi.org/10.1080/02739610903455111

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Children’s Health Care, 39:15–33, 2010

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DOI: 10.1080/02739610903455111

Development of the Diabetes FamilyAdherence Measure (D–FAM)

Adam B. LewinDepartment of Pediatrics, University of South Florida College of

Medicine, Rothman Center for Neuropsychiatry, St. Petersburg, FL; and

Department of Psychiatry & Biobehavioral Sciences,

Semel Institute for Neuroscience and Human Behavior,

University of California Los Angeles, Los Angeles, CA

Gary R. GeffkenDepartments of Psychiatry, Pediatrics, and Clinical & Health

Psychology, University of Florida, Gainesville, FL

Laura B. WilliamsDepartment of Pediatrics, University of South Florida, Tampa, FL

Danny C. DukeChild Development and Rehabilitation Center, Oregon Health & Science

University, Portland, OR

Eric A. StorchDepartment of Pediatrics, University of South Florida, St. Petersburg, FL

Janet H. SilversteinDepartment of Pediatrics, University of Florida, Gainesville, FL

Correspondence should be addressed to Adam B. Lewin, PhD, Department of Pediatrics,

University of South Florida School of Medicine, Rothman Center for Neuropsychiatry, 800 6th

St. S., 4th Fl. N., Box 7523, St. Petersburg, FL 33701. E-mail: [email protected]

15

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16 LEWIN ET AL.

The objective of this research was to develop and validate the Diabetes Family

Adherence Measure (D–FAM), a comprehensive and up-to-date tool designed

for the assessment of adherence-related parenting behaviors for youth with type

1 diabetes (T1D). Further, this article outlines an empirical approach for scale

design. First, experts reviewed a battery of potential items to create a preliminary

version of the D–FAM. Subsequently, 165 youth with T1D and their families

completed an initial administration. A parsimonious measure resulted, consisting

of 19 items with 4 additional validity items. Factor analysis identified supportive,

coercive, control, and monitoring subscales. D–FAM factors were generally asso-

ciated with both adherence and health status (HbA1c [glycosolated hemoglobin]),

as well as with extant scales of family functioning. Strong internal consistency,

test–retest reliability, and construct-convergent reliability were obtained. This ini-

tial evaluation of the D–FAM suggests utility for efficient evaluation of family

functioning related to adherence and glycemic control for research and clinical

purposes.

Improperly managed type 1 diabetes (T1D), a relatively common disease of

childhood, is associated with significant morbidity and mortality (Diabetes Con-

trol and Complication Trial, 1993). Despite the advent of intensive treatment

regimens that can help minimize the risk of life-threatening complications,

parents and their children struggle to implement medical recommendations.

Although many factors relate to suboptimal adherence (Johnson, 1994), expertshave identified family dynamics to be a critical but understudied variable in

understanding the optimization of adherence behaviors (La Greca & Mackey,

2009; Rapoff, 1999).

Researchers have established links between several aspects of family func-

tioning and both regimen adherence and health status indicators (e.g., metaboliccontrol; Hood, Butler, Anderson, & Laffel, 2007; McKelvey et al., 1993; Miller-

Johnson et al., 1994). For example, positive parental emotional support (e.g.,

expressing understanding regarding the difficulties of living with diabetes and

the treatment regimen and relating to their child about having diabetes) has

been associated with improved metabolic control (Lewin, Geffken, et al., 2005;Lewin et al., 2006; McKelvey et al., 1993; McKelvey et al., 1989). La Greca

et al. (1995) found that diabetes-related parental supportive behaviors related to

adherence with all major components of the diabetes care regimen (e.g., insulin

administration, testing, and diet). Data from a longitudinal study also supports

an association between family communication and improved metabolic control

(Jacobson et al., 1990, 1994).In addition, sufficient (but non-coercive) parental guidance with diabetes-

related care tasks is positively correlated with improved diabetes health status

indicators, such as metabolic control (Lewin, Geffken, et al., 2005; McKelvey

et al., 1993; Waller et al., 1986). Studies have also found that patients ex-

periencing high levels of family conflict display poorer adherence or worse

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DIABETES FAMILY ADHERENCE MEASURE 17

metabolic control (La Greca & Mackey, 2009; Miller-Johnson et al., 1994).

More specifically, negative and unsupportive parental behavior patterns related to

diabetes care behaviors (e.g., coercion, nagging, threats, criticism, and scolding)are correlated with both metabolic control and regimen adherence (Lewin et al.,

2006; Schafer, Glasgow, McCaul, & Dreher, 1983; Schafer, McCaul, & Glasgow,

1986). Further, in a study evaluating a parent-adolescent teamwork approach to

diabetes management, families in the intervention group reported significantly

less parent–child conflict related to diabetes management and were in bettermetabolic control (Anderson, Brackett, Ho, & Laffel, 1999). Overall, family

conflict specific to diabetes care has been the factor most strongly related to

both metabolic control (Lewin, Geffken, et al., 2005; Lewin et al., 2006) and

diabetic ketoacidosis (DKA; Geffken et al., 2008).

Appropriate parental supervision of diabetes care tasks is also related to ad-

herence and health status. Wysocki et al. (1996) also examined families’ diabetesresponsibility relative to the child’s developmental level. Results indicated that

children reporting more diabetes management responsibilities demonstrated less

adherence and worse metabolic control. Parents who are less involved have

children who are less adherent with their treatment regimen, have children

who make more mistakes in self-care, and have poorer metabolic control thanchildren whose parents are involved in a developmentally appropriate style

(Weissberg-Benchell et al., 1995; Wysocki et al., 1996). More recently, a study

of 127 adolescents found that maternal un-involvement with a child’s treat-

ment regimen was associated with poorer adherence and worse quality of life

(Wiebe et al., 2005). Anderson, Auslander, Jung, Miller, and Santiago (1990)found that disagreements between parents and children regarding responsibility

for diabetes-related tasks predicted poor metabolic control. In addition, these

researchers found that poorer metabolic control was positively correlated with

families in which neither the parent nor child assumed responsibility for diabetes-

related tasks.

Consistent with the extant literature, studies have found that parental involve-ment was important across all ages (with regard to maximizing adherence),

although the optimal level of involvement varies with age and developmental

level (Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997; Anderson & Laffel,

1997). One major challenge is matching the child’s emerging developmental

desire for independence with appropriate parental supervision for disease-relatedtasks. Research suggests that in a T1D regimen, nonadherence peaks during

middle adolescence (Kovacs, Goldston, Obrosky, & Iyengar, 1992). Indeed, some

evidence suggests that non-adherence may arise due to inappropriate transfer of

disease-related control from parent to adolescent (Gowers, Jones, Kiana, North,

& Price, 1995). Moreover, parents must gauge how to turn over responsibil-ity to the adolescent during this transition. Although there is agreement in

the literature that shifts of responsibility should be gradual, adolescents and

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18 LEWIN ET AL.

parents are likely to approach the transferring of responsibility from differ-

ent perspectives (Dashiff, Bartolucci, Wallander, & Abdullatif, 2005). Because

adolescents desire more freedom and autonomy, whereas parents prefer moreconventional perspectives related to compliance, these differing perspectives can

result in diabetes-related parent–child conflict (Dashiff et al., 2005). Overall,

better adherence has been documented when parents were seen as collaborating,

not controlling, when dealing with their adolescent’s diabetes-related problems

(Wiebe et al., 2005).Overall, these findings linking metabolic control to diabetes-specific family

processes (such as parental involvement in diabetes tasks and the child’s

perception of the valence of diabetes-related parental behaviors and support)

highlight the importance of these constructs. Anderson and Laffel (1997) de-

scribed diabetes-specific family functioning as critical constructs for assessment

in order to optimize metabolic control and adherence outcomes. Althoughrelations between individual family processes (e.g., responsibility, parental

warmth, etc.) with metabolic control are relatively small, experts suggest that

incorporating multiple diabetes-related family constructs might demonstrate a

stronger connection with metabolic control (Lewin et al., 2006; McKelvey et al.,

1993).Despite these findings, relations of each individual family process (e.g.,

responsibility, parental warmth, etc.) with glycemic control and adherence are

relatively small (partial correlations between .12–.32; Anderson et al., 1990;

Schafer et al., 1986; Waller et al., 1986). However, recent multivariate analysis

suggested the utility of assessing multiple domains of diabetes-specific familyfunctioning simultaneously. Specifically, as much as 49% of the variance in

glycemic control (Duke et al., 2008; Lewin et al., 2006) and 44% of the variance

in DKA (Geffken et al., 2008) can be accounted for by assessing multiple

diabetes related parenting and family behaviors.

Nevertheless, there are limitations to simultaneous assessment of multiple

family factors, as described earlier. First, despite the use of multiple rating scales,no empirical procedures (e.g., factor analysis) were implemented to determine if

the combined battery assessed multiple aspects of family functioning. Second,

researchers (and clinicians) are limited by the absence of a validated instrument

designed to assess multiple domains of diabetes-specific family functioning

simultaneously. Third, the technology of a diabetes treatment regimen has in-creased exponentially over the past 2 decades (since the advent of many of

the extant measures of family functioning). Consequently, these measures may

(a) not adequately assess recent complexities of the care regimen that place

increased demands on families (e.g., carbohydrate counting and intensive insulin

therapy or pumps); or alternatively, (b) language of extant measures may notbe robust enough to be applicable to the wide range of current regimens (e.g.,

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DIABETES FAMILY ADHERENCE MEASURE 19

referring to mixing insulin, delaying meals, rolling vials, and other behaviors

that may not be required for newer regimens).

The objective of this research was to develop and validate the DiabetesFamily Adherence Measure (D–FAM), an up-to-date, comprehensive, youth-

rated measure of diabetes-related parenting and family processes for youth with

T1D. This measure was designed to provide a tool for clinicians and researchers

to efficiently assess multiple family behaviors that (a) correspond with adherence

to the diabetes treatment regimen and (b) have been linked to diabetes-relatedhealth status (e.g., HbA1c [glycosolated hemoglobin] and DKA). This study

examined the psychometric properties including factor structure, reliability, and

validity of the D–FAM.

METHOD

Phase 1: Item Generation and Selection

Initial items (100) were generated by Adam B. Lewin based on family-functioning

constructs associated with adherence and glycemic control in the extant literature

(e.g., support, conflict or coercion, guidance, and responsibility). Items were

presented on a 5-point ordinal frequency scale ranging from 1 (never) to 5(always). One half of the items were negatively phrased to discourage response

sets (Comrey, 1988). Scoring was later reversed on these items for consistency.

Subsequently, a panel of 20 experts from eight university-based medical centers

(7 endocrinologists, 6 certified diabetes nurse educators, and 7 psychologists

with expertise in pediatric diabetes) reviewed items for their appropriateness.Each member of the panel was provided with all 100 initial items. Raters were

asked to mark preliminarily D–FAM items that appeared appropriate, irrelevant–

inapplicable, confusing–poorly worded, and to suggest areas of missing content.

The panel was also given an opportunity to (a) suggest edits to response choices

and (b) evaluate the appropriateness of validity items (i.e., raters were askedto list the 5 most appropriate items). Based on expert feedback, the D–FAM

was reduced to 70 items. Retention of items was conservative—items that

were marked as confusing or inapplicable by 1 or more panel members were

deleted. Further, only items that were marked as appropriate by at least 85%

of the panel were retained, although the content of several items (approxi-

mately 20%) was modified based on expert feedback. Eight validity items,designed to assess careful responding and desire to appear favorably, were

selected based on panel ratings. Subsequently, the order of the questions was

randomized, and 5 panel members were asked to reevaluate the D–FAM prior

to Phase 2.

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20 LEWIN ET AL.

Phase 2: Measure Evaluation

Participants and Procedures

A total of 165 pediatric patients with T1D (ages 8–18 years)1 and their

primary caregivers were recruited from the university-based pediatric endocrinol-

ogy clinic in the Southeastern United States. Inclusion criteria were as follows:

(a) ages 8 to 18 years, (b) a diagnosis of T1D for at least 1 year, (c) accompanied

by a primary caregiver, (d) ability to read and comprehend study materials,and (e) no evidence of developmental disabilities or psychosis (assessed via a

screening questionnaire with the parent and clinician observation; confirmed with

review of the medical record following receipt of informed consent). Signed in-

formed consent was obtained from each participant. Families were compensated

$10 for their participation. The participation rate was 92%. The modal indication

for non-participation was time restriction; most of these families agreed toparticipate at a future appointment. The sample consisted of 68 boys and 97 girls,

ages 8 to 18 years (M D 13:50 years, SD D 3:00 years). The ethnic distribution

was 70% Caucasian, 17% African American, 11% Hispanic, and 2% representing

“other” ethnic groups. Youth participating in this study were predominantly from

two-parent families (65.80%), and mothers (76.40%) primarily completed theparent measures. On average, participants had been diagnosed with diabetes for

4.80 years (SD D 3:70; range D 0.5–18 years). On average, sample participants

had a mean HbA1c of 8.90 (SD D 1:90; range D 5.00–14.00) and 1.30 episodes

of DKA (SD D 1:80; range D 0–8; obtained by parent report).

Experimental Measure

D–FAM. At the time of administration, a youth-rated 70-item (5-point

Likert scale) comprehensive measure of T1D adherence-related parenting and

family processes (under development and evaluation in this study) was admin-

istered. Instructions requested that youth rate items based on the past 3 months,

consistent with the HbA1c measurement.

Extant Family Measures

The following diabetes family functioning surveys were selected given their

strong association with adherence and health status in previous research (e.g.,

1Please note that subsets of these participants may have been included in the following studies:

Duke et al. (2008); Lehmkuhl et al. (2009); Lewin, La Greca, et al. (2009); and Lewin, Storch,

et al. (2009). Although participants differ in each of the studies, adherence-metabolic control-family

factor relations across studies may reflect some overlap in participants and should not be considered

completely independent findings. However, the Diabetes Family Adherence Measure data are isolated

to this research article.

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DIABETES FAMILY ADHERENCE MEASURE 21

Anderson et al., 1997; Lewin, Geffken, et al., 2005; Lewin et al., 2006; McKelvey

et al., 1993; Schafer et al., 1986; Waller et al., 1986).

Diabetes Family Behavior Scale (DFBS; Waller et al., 1986). TheDFBS is a measure of perceived family support completed by youth with T1D.

Only the 15-item warmth/caring (WC; e.g., “My parent understands how I feel

about having diabetes”) and guidance/control (GC; e.g., “My parent reminds

me to test my blood sugar”) subscales were used due to the aims of this study.

Participants responded to statements on a 5-point scale ranging from 1 (all

of the time) to 5 (never). Higher scores suggest greater WC or GC. Internal

consistency was acceptable with our sample: ˛ D 0:69 and 0.71 for the WC

and GC subscales, respectively.

Diabetes Family Behavior Checklist (DFBC; Schafer et al., 1986). The

DFBC is a child-rated measure of family support specific to diabetes. For this

research, only the seven-item non-supportive family behavior scale was used.Children rated their parents on items such as, how do your parents “nag you

about following your diet.” Items are scored on a 5-point Likert scale ranging

from 1 (never) to 5 (at least once a day). Higher scores suggest more negative

and coercive parental behaviors. Good internal consistency .˛ D �0:79/ and

parent–child agreement (r D :53, p < :001) have been demonstrated withthis scale in previous clinical samples (Lewin, Geffken, et al., 2005). Internal

consistency .˛ D 0:70/ was acceptable for our sample.

Diabetes Family Responsibility Questionnaire (DFRQ; Anderson et al.,

1990). The DFRQ assesses the family sharing of responsibilities concerning

diabetes treatment. Both the parent and child completed this measure individually

by reading a list of 17 diabetes care tasks and indicating which familymember accepts responsibility for that specific task (i.e., parent, child, or

shared). A parent–child dyadic no-responsibility score is calculated based on

patterns of agreement and disagreement within the pair. Higher no-responsibility

scores suggest that less responsibility is assumed by either the parent or the

child. Acceptable internal consistency .˛ D 0:79/ was obtained with thissample.

Measures of Adherence and Health Status

Diabetes Self-Management Profile (DSMP; Harris et al., 2000). The

DSMP is a 23-item structured interview with an administration time of approx-

imately 15 min. Questions assess insulin administration and dose adjustment,

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22 LEWIN ET AL.

blood-glucose monitoring, exercise, diet, and management of hypoglycemia.

Strong parent–child agreement .r D :56/ and validity (correlation with HbA1c,

r D :60) have been demonstrated (Lewin, Storch, et al., 2005). Items wereresponded to in an open-ended manner, and interviews were conducted by study

authors (each with over 5 years experience using the DSMP). All items summed

to produce a total adherence score; higher scores suggest greater adherence.

Acceptable internal consistency was found for both parent .˛ D 0:76/ and

youth .˛ D 0:74/ administrations in our sample. The DSMP was selected givenits strong psychometrics (Harris et al., 2000; Iannotti et al., 2006; Lewin, Storch,

et al., 2005; Lewin, Storch, et al., 2009), structured-interview format, parallel

parent and child versions, and applicability to multiple regimen types (Diabetes

Research in Children Network, 2005).

Measurement of glycemic control. HbA1c provides a single-measure es-

timate of glycemic control over the previous 2 to 3 months (American Dia-

betes Association, 2005) and is considered the gold-standard assay of diabetes

metabolic control (Silverstein et al., 2005). Blood samples were analyzed usinga Bayer DCA 2000C (calibrated daily, manufactured by Siemens, Elkhart, IN)

and were collected during the study visit when the D–FAM and other measures

were completed (as part of the patient’s routine medical care).

DKA. Frequency of DKA was obtained by retrospective parental report of

lifetime episodes.

Data Analysis

Exploratory factor analysis (EFA) was used for scale identification. Principal

axis EFA with promax rotation was performed to determine the optimal fac-

tor structure of the D–FAM (youth and parent forms separately). The oblique

rotation was implemented to allow potential factors to correlate. Criteria foridentifying the factors were based on (a) Glorfeld’s (1995) version of parallel

analysis, (b) the minimum average partials (MAP) method (Glorfeld, 1995;

Velicer, 1976); and (c) the scree plot. A minimum loading of 0.40 was re-

quired for each item; items cross-loading � 0.40 on multiple factors would

be omitted. Given the ordinal nature of the D–FAM, Spearman’s correlations

were used in analyses; p values less than .05 were interpreted. The internalconsistency of the D–FAM scores was evaluated using Cronbach’s alpha co-

efficient (Cronbach, 1951). Hierarchical regression was used for incremental

validity and multivariate analysis of variance (MANOVA) for identifying dif-

ferences in sample characteristics between the test–retest group and the overall

sample.

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DIABETES FAMILY ADHERENCE MEASURE 23

RESULTS

Scale Refinement

Although the D–FAM questionnaire administered to this study sample was

initially 70 items, initially, eight questions were designed as potential validity or

social desirability indicators (Strahan & Gerbasi, 1972) and were excluded from

factor analytical procedures. The majority of the remaining items included multi-

ple phrasing of similar content. Often, three to four times the number of questionsthat will be included in the final measure are administered to the initial sam-

ple (Worthington & Whittaker, 2006). Several considerations were included in

eliminating items, such as redundancy, insufficient variation in responses, item-

to-total correlations, item means, and inclusion of reverse-scored items (Clark &

Watson, 1995; Comrey, 1988; DeVellis, 2003; Worthington & Whittaker, 2006).

Factor Analysis

A principal component EFA with promax rotation was performed to determinethe optimal factor structure for this sample. Criteria for identifying the factors

were based on (a) Glorfeld’s (1995) version of parallel analysis with a sample

size of N D 165 and k D 18 variables (eigenvalues must be > 5.00 eigenvalues

for the first component, 2.50 for the second component, 1.30 for the third

component, and 1.00 for the fourth component using the 95th percentile and1,000 replications), (b) the MAP method (Velicer, 1976), and (c) the scree plot.

Syntax for Velicer’s MAP test (O’Connor, 2000) indicated four components. EFA

identified a four-factor solution accounting for 63% of the variance (eigenvalues

were 5.10, 2.50, 1.40, and 1.30) and was consistent with the scree plot. Data are

presented in Table 1. The first factor (7 items), identified as coercion, produced

factor loadings that ranged from .489 to .759 (with only 2 values < .5). Thesecond factor contained five items, and was labeled supportive. High factor

loadings were obtained, ranging from .537 to .832. The third factor contained

three items that can be described as control; factor loadings were high, ranging

from .722 to .810. The final factor, labeled monitoring, contained four items.

Loadings were also high for this factor, ranging from .617 to .808 (Floyd &Widaman, 1995). Communalities are strong for this model (.2–.4 are adequate;

.6 or higher are excellent; MacCallum, Widaman, Zhang, & Hong, 1999).

Internal Consistency

Strong internal consistency was found for each subscale: supportive (0.85),

coercive (0.82), monitoring (0.78), and control (0.75). Within-scale inter-item

correlations range as follows: supportive (0.46–0.76), coercive (0.37–0.80), mon-

itoring (0.31–0.83), and control (0.33–0.84); p < :001 for all values.

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24 LEWIN ET AL.

TABLE 1

Rotated Factor Loadings and Initial Communality Coefficients for D–FAM

D–FAM Items Coercion Supportive Monitoring Control Communalities

My parents blame me when

my blood sugar is too high

.707 .260 �.014 .058 .553

I get yelled at if I forget my

insulin

.675 .237 .113 .204 .460

My parents and I argue

because of diabetes

.703 .202 .206 .191 .527

I’m afraid to talk about

diabetes with my parents

.489 .285 �.026 .002 .393

My parents nag me to check

my blood sugar

.759 .191 .106 .171 .590

My parents get mad if I forget

to exercise

.648 .181 .098 .171 .427

My parents nag me about not

taking care of my diabetes

.525 .095 �.158 .139 .473

If I have a problem taking

care of my diabetes, my

parents will help

.308 .812 .239 .182 .661

My parents explain diabetes

care to my teachers

.383 .832 .282 .374 .699

I can talk to my parents about

having diabetes

.221 .816 .211 .337 .677

My parents pay attention

when I ask for help with

taking care of my diabetes

.202 .753 .060 .204 .628

My parents tell me when I do

a good job taking care of

my diabetes

.164 .537 .196 .094 .338

My parents decide how much

insulin I take

.143 .213 .810 .107 .548

My parents are responsible for

reminding me to take my

insulin

.176 .250 .722 .234 .689

My parents do the carb

counting for me

.074 .220 .739 .151 .412

My parents watch me give my

bolus or fast-acting insulin

at meal times

.155 .205 .254 .716 .666

My parents watch me draw-up

my insulin (or watch me set

my pump)

.065 .229 .146 .808 .698

My parents look at my

meter’s (and/or pump’s) log

.056 .265 .226 .617 .534

My parents look at my ketone

strip

.151 .344 .330 .808 .552

Note. Numbers in bold-face type represent items with the highest loadings on each factor.

D–FAM D Diabetes Family Adherence Measure.

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DIABETES FAMILY ADHERENCE MEASURE 25

TABLE 2

Interrelations Between D–FAM Scores

D–FAM Items 1 2 3 4

1. Support 1

2. Coercion �0.43** 1

3. Monitoring 0.51** �0.22** 1

4. Control 0.41** �0.20* 0.36** 1

M (SD) 20.20 (4.90) 26.60 (6.00) 6.90 (3.40) 12.8 (4.1)

Note. D–FAM D Diabetes Family Adherence Measure.

*p < :01. **p < :001.

Convergent Validity

Intercorrelations between D–FAM subscale scores (see Table 2) suggest separateyet related constructs. In addition, correlations between D–FAM scores and

extant measures of diabetes-specific family functioning suggest convergent and

divergent validity (see Table 3). For example, the D–FAM coercion subscale

relates most strongly with the DFBC non-supportive subscale and inversely with

the DFBS WC subscale. However, the D–FAM coercion subscale does not relate

with the DFBC GC and the DFRQ no–responsibility subscales, providing initialsupport for discriminant validity.

Construct Validity

Table 3 also presents correlations between the D–FAM and parent-youth reports

of adherence. HbA1c related to D–FAM support .r D �:37/, coercion .r D :39/,

TABLE 3

Interrelations Between D–FAM Scores and Validity Measures

D–FAM

Items DFBC–CN DFBS WC DFBS GC DFRQ NR DSMP–Parent DSMP–Child

Support �.35*** .30*** .10 �.16 .29*** .33***

Coercion �.65*** .22*** .14 �.14 .35*** .23***

Monitoring �.22** �.09 .20** �.26*** .21*** .17*

Control �.15 .12 .22** �.20** .18* .25***

M (SD) 15.20 (5.50) 16.40 (5.80) 52.90 (10.30) 55.10 (8.90) 57.10 (11.60) 58.00 (9.80)

Note. D–FAM D Diabetes Family Adherence Measure; DFBC–CN D Diabetes Family Behavior Checklist–

Child-Rated Negativity; DFBS D Diabetes Family Behavior Scale; WC D warmth/caring subscale; GC D

guidance/control subscale; DFRQ NR D Diabetes Family Responsibility Questionnaire no-responsibility index;

DSMP D Diabetes Self-Management Profile.

*p < :05. **p < :01. ***p < :001.

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26 LEWIN ET AL.

and control (r D �:24; all ps < .001), but not monitoring (r D �:11, p D :10).

The frequency of DKA also related to D–FAM coercion (r D :30). Overall,

increased coercive behavior related to worse adherence, metabolic control, andmore episodes of DKA. More supportive behavior and control related to better

adherence and metabolic control. Increased parental monitoring related to higher

adherence.

Incremental Validity

The D–FAM demonstrated incremental validity (Haynes & Lench, 2003) overextant measures of family functioning (DFRQ, DFBC, DFBS WC, and DFBS

GC) in the prediction of HbA1c .R2� D 18/, F.4; 114/ D 6:40, p < :001.

Test-Retest Reliability

Two-week test–retest data were collected for 17.5% .n D 28/ of respondents

participating in this research. Approximately 30% of participants (every third

participant recruited) were asked to complete test–retest data (2 refused, citingtime constrains). Thus, approximately 60% of participants whom were asked to

complete test–retest data and agreed returned the measures within a requested

2-week period. MANOVA, used to analyze differences between participants

completing test–retest data and youth in the overall sample who did not com-

plete the test–retest, was nonsignificant for group differences, suggesting thatcompleters of the test–retest data did not differ, relative to the overall sample on

HbA1c, DKA, demographic variables, parent-youth reports of adherence, and

D–FAM scores. Strong, positive correlations between the original administration

and the retest administration were identified for supportive .r D :83/, coercive

.r D :85/, monitoring .r D :79/, and control (r D :77; all ps < .001).

Development of the Social Desirability Scale

We retained four of the original set of eight questions designed as potential

validity and social desirability indicators given their non-normal distribution

patterns (less than 8% of the sample responding on the high-end anchor choice;

only the 4 items with highly skewed response patterns were retained; DeVellis,

2003; Strahan & Gerbasi, 1972). The items are listed in the Appendix. Lessthan 4% of the sample endorsed “always” on two of these four items. Coefficient

alpha was low for this scale (0.38), which is not surprising given the short length

of the scale, variability of content, skewed distribution of responses, and low

overall responses. In addition, test–retest reliability was low (n D 28; r D :21,

p D :50), which is also not surprising given that endorsing “always” on these

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DIABETES FAMILY ADHERENCE MEASURE 27

items was markedly atypical. There was insufficient power to compare group

differences between youth who endorse atypical items versus the remainder of

the sample.

DISCUSSION

This research has addressed the development and validation of the D–FAM, a

youth-report measure of adherence-related parent–child relationship processes

for youth with T1D. The development and evaluation of the D–FAM followedan empirical approach for scale design (Worthington & Whittaker, 2006). Factor

analysis of the D–FAM produced a four-factor solution representing parental

support, coercion, monitoring, and control specific to diabetes. Subscales demon-

strated strong internal consistency, test–retest reliability, convergent and diver-

gent validity, and construct validity.Internal consistency and test–retest reliability were used as indexes of reliabil-

ity. Acceptable internal consistency was found for each of the D–FAM subscales,

suggesting that items within each subscale contribute to the overall subscale’s

score. Strong test–retest correlations were also found. High associations between

initial reports and 2-week retests are promising statistics given that family

functioning is believed to be a relatively stable construct. Correlations werestrong and significant, despite the low number of youth completing the retest

administration. Further, our data suggested that children who were retested were

representative of the overall sample. Overall, data from our sample support

reliability of the D–FAM and the four-factor structure.

A strong, initial analysis of the D–FAM’s validity was also conducted. First,concurrent validity was assessed via comparisons with extant measures of diabetes-

specific family functioning. Relations with extant measures were found in the

expected directions. Moderate to strong correlations were found between the

D–FAM factors and HbA1c, child-parent reports of regimen adherence, and

(although somewhat weaker) with the frequency of prior DKA. In addition,discriminant validity was also demonstrated in that D–FAM subscales correlated

with extant measures covering similar content (e.g., D–FAM control related to

DFBC GC and DFRQ no-responsibility, but not with DFBC non-supportive

parenting and DFBS WC).

Of note, despite the initial inclusion of a number of items addressing insulin

pump behaviors, insulin-to-carbohydrate ratios, and mixing insulin, these itemsdid not meet criteria for inclusion on the D–FAM. A possible explanation

is that more general diabetes care tasks, rather than regimen-specific tasks,

appeared more favorable in a broad sample. Future analyses could examine

family functioning differences among youth with intensive insulin therapy versus

other protocols. Overall, the items in our measure appear robust to a number

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28 LEWIN ET AL.

of diabetes regimens (e.g., D–FAM language applies to insulin pump users,

intensive insulin regimens), although future research could provide empirical

support. The addition of the Social Desirability Scale must be considered ex-ploratory because we had insufficient power to evaluate group differences. How-

ever, this scale produced a subset of items rarely endorsed, and can suggest

attention to be directed to any respondent endorsing these items, especially

given that less than 4% of our sample endorsed “always” on two or more of

these items.Overall, findings of this study offer support and extensions to extant literature

on diabetes family functioning. For example, consistent with previous studies,

better adherence and health status was found in youth whose parents were rated

as displaying increased positive emotional support (e.g., expressing understand-

ing regarding the difficulties of living with diabetes, being approachable to

discuss diabetes-related topics, and relating to their child about having diabetes;La Greca et al., 1995; Lewin, Geffken, et al., 2005; Lewin et al., 2006; Schafer

et al., 1986; Waller et al., 1986). Conversely, harsh and critical parental behavior

patterns surrounding diabetes care activities (e.g., nagging, scolding, and yelling)

related to worse adherence and metabolic control (Anderson et al., 1997; Hood

et al., 2007; Lewin et al., 2006; Miller-Johnson et al., 1994; Schafer et al.,1986). In addition, appropriate parental monitoring and control and supervision

of diabetes care tasks was related to adherence (Anderson et al., 1990; Anderson

et al., 1997; Anderson & Laffel, 1997; Weissberg-Benchell et al., 1995; Wiebe

et al., 2005; Wysocki et al., 1996).

This study also documented a strong interrelation between diabetes adherence-related family factors (e.g., support, coercion, monitoring, and control) while also

suggesting that these factors represent separate constructs. This is consistent with

theories suggesting that multiple related, albeit independent, family processes

are embedded in diabetes self-care in youth (Anderson & Laffel, 1997; Lewin

et al., 2006; McKelvey et al., 1993). Although beyond the aims of the research

presented in this study, future analyses could employ the D–FAM to elucidatethe developmental pattern of adherence-related family factors. Specifically, prior

research suggests that certain family processes (e.g., control, guidance, and

monitoring) are of higher importance in preadolescents (Anderson et al., 1997;

Waller et al., 1986), whereas others are relevant through multiple age spans.

A recent developmental study suggested that adolescent independence in self-care may be favorable long-term outcomes (autonomy), but negative short-

term consequences and risk of poor health outcomes (Butner et al., 2009).

Through longitudinal research (or larger cross-sectional studies), the D–FAM

may assist researchers in understanding how specific diabetes-related family

processes affect adherence and health status as a child matures.There are a number of limitations regarding this research. First, a larger

sample size may have allowed the inclusion of additional items and possibly

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DIABETES FAMILY ADHERENCE MEASURE 29

the identification of additional factors and allowed for a statistical evaluation

of the Social Desirability Scale. Second, this study lacks a parent D–FAM—

development of a parent report version would allow for parent-youth compar-isons and provide additional perspectives of family functioning. Third, char-

acteristics of this sample (e.g., low income and relatively high occurrence of

DKA) may also limit generalization of findings. Fourth, although our sample

may be appropriate for validation, a larger, representative sample is needed for

normative purposes and replication of the factor structure using confirmatorytechniques. Fifth, longitudinal analysis of the D–FAM could provide long-term

stability estimates for the D–FAM, as well as tracing developmental changes

in diabetes-related family functioning. Finally, estimates of DKA are based on

retrospective parental report and, consequently, may be inaccurate.

Implications for Practice

The D–FAM provides a clinical research tool for the assessment of family

behaviors that corresponds with adherence to the diabetes treatment regimen

and has been linked to diabetes-related health status. Despite the utility of extant

measures of family functioning, the technology of diabetes treatment regimen

has increased exponentially over the past decade. It stands to reason that theresources of the family to cope with the increased complexity have become

increasingly taxed. Given the complex, challenging, and often stress-inducing

nature of diabetes treatment regimen, there is a clear role of behavioral health

experts in helping family members understand and adjust to the requirements

of the child’s diabetes regimen (La Greca & Mackey, 2009; Lewin, Storch,

Silverstein, et al., 2005). More specifically, researchers and clinicians positedthat improving adherence and glycemic control in youth with T1D must involve

changes within the family system; recent controlled investigations are targeting

these factors (Wysocki et al., 2000). Consequently, practical and valid measure-

ment (robust to various diabetes regimens) of these family processes is indicated.

Information gathered from a comprehensive assessment of family functioning(as assessed by the D–FAM) would be useful in both research evaluation and

clinical treatment planning including examination of current perceptions of the

child, as well as changes over time.

ACKNOWLEDGMENT

This research was funded by a grant awarded to Dr. Lewin from the Children’s

Miracle Network, a NARSAD Young Investigator Award, and a fellowship from

the Joseph Drown Foundation & the Friends of the Semel Institute.

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30 LEWIN ET AL.

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DIABETES FAMILY ADHERENCE MEASURE 33

APPENDIX

Diabetes Family Adherence Measure (D–FAM)

Directions: Please circle the answer that best describes what happened or didn’t happen in your family during

the past 3 months. Circle only 1 answer. There are no right or wrong answers; just circle what happens in your

family. If you are not sure, make your best guess.

Never

True

A little of

the time

true

Sometimes

true

A lot of

the time

true

Always

True

S 1 My parents tell me when I do a good job

taking care of my diabetes

1 2 3 4 5

C 2 My parents decide how much insulin I

take

1 2 3 4 5

R 3 My parents blame me when my blood

sugar is too high

1 2 3 4 5

S 4 My parents pay attention when I ask for

help with taking care of my diabetes

1 2 3 4 5

M 5 My parents watch me draw-up my

insulin (or watch me set my pump)

1 2 3 4 5

M 6 My parents look at my ketone strip 1 2 3 4 5

V 7 I check ketones 6 times every day 1 2 3 4 5

R 8 I get yelled at if I forget my insulin 1 2 3 4 5

R 9 My parents and I argue because of

diabetes

1 2 3 4 5

C 10 My parents do the carb counting for me 1 2 3 4 5

V 11 I eat exactly what I should every time 1 2 3 4 5

M 12 My parents watch me give my bolus or

fast-acting insulin at meal times

1 2 3 4 5

R 13 I’m afraid to talk about diabetes with my

parents

1 2 3 4 5

S 14 My parents explain diabetes care to my

teachers

1 2 3 4 5

S 15 I can talk to my parents about having

diabetes

1 2 3 4 5

R 16 My parents nag me to check my blood

sugar

1 2 3 4 5

V 17 My blood sugar is always between 80

and 120

1 2 3 4 5

C 18 My parents are responsible for

reminding me to take my insulin

1 2 3 4 5

R 19 My parents get mad if I forget to

exercise

1 2 3 4 5

M 20 My parents look at my meter’s (and/or

pump’s) log

1 2 3 4 5

V 21 I’m glad I have diabetes 1 2 3 4 5

R 22 My parents nag me about not taking care

of my diabetes

1 2 3 4 5

S 23 If I have a problem taking care of my

diabetes, my parents will help

1 2 3 4 5

Note. S D support; R D coercion; M D monitoring; C D control; V D validity.

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