Diabetes Family Responsibility Questionnaire (DFRQ)

Abstract

The Diabetes Family Responsibility Questionnaire (DFRQ) is an extensively utilized, clinician- and researcher-administered psychometric instrument conceptualized by Barbara J. Anderson and colleagues (1990). Developed at the Washington University School of Medicine and St. Louis Children’s Hospital, the instrument was engineered to assess the division, sharing, and allocation of diabetes-related treatment responsibilities between children or adolescents diagnosed with Type 1 Diabetes Mellitus (T1D) and their maternal or paternal caregivers. Structurally comprised of distinct everyday self-care scenarios and clinical behaviors across core medical and social tasks, the DFRQ measures the degree to which parents, youth, or both parties cooperatively share the complex burden of diabetes management. Responses are gathered across parallel parent and child forms using a 3-point categorical rating format: (1) parent initiated or took responsibility almost all of the time, (2) child and parent shared responsibility about equally, and (3) child took or initiated responsibility almost all of the time. Psychometrically, the instrument yields two overarching, empirically derived dimensions: Direct Health / Management Tasks (e.g., insulin administration, blood glucose monitoring, ketone checking) and Indirect Health / Regimen Tasks (e.g., scheduling clinic appointments, packing snacks, communicating diabetes needs to school personnel and peers). The DFRQ exhibits strong internal consistency (Cronbach’s alpha coefficients typically ranging from .69 to .84 across subscales and informant reports), solid test-retest reliability, robust construct and convergent validity correlated with youth age, illness duration, regimen adherence, and glycemic control as measured by glycosylated hemoglobin (HbA1c). Critically, cross-informant dyadic discrepancy scores derived from comparing child and parent ratings have revealed that discordant perceptions of responsibility allocation predict elevated family conflict and deteriorating metabolic control, establishing the DFRQ as a benchmark instrument within pediatric psychology and behavioral medicine.

Keywords

Diabetes Family Responsibility Questionnaire, DFRQ, Type 1 Diabetes, pediatric psychology, self-management, parental involvement, adolescent autonomy, family conflict, treatment adherence, glycemic control, psychometrics.

Authors

The Diabetes Family Responsibility Questionnaire was designed and empirically evaluated by a multidisciplinary team of behavioral scientists, clinical psychologists, and pediatric endocrinologists led by Barbara J. Anderson, Ph.D.

• Barbara J. Anderson, Ph.D.: Professor of Pediatrics and Behavioral Medicine at Baylor College of Medicine and Texas Children’s Hospital (formerly at Joslin Diabetes Center, Harvard Medical School, and Washington University School of Medicine in St. Louis, Missouri). Dr. Anderson is internationally recognized for her seminal work on family-based interventions, developmental transitions in chronic pediatric conditions, and behavioral adaptation to Type 1 diabetes.
• Wendy F. Auslander, Ph.D., MSW: Professor of Social Work at the George Warren Brown School of Social Work, Washington University in St. Louis, whose research emphasizes the intersection of socio-environmental stressors, family functioning, and health outcomes in youth with chronic medical conditions.
• Kyoung C. Jung, M.S.: Biostatistician and psychometrician collaborating with the Washington University Pediatric Diabetes Research Training Center.
• Patricia Miller, R.N., B.S.N.: Clinical Research Nurse and Pediatric Diabetes Nurse Educator at St. Louis Children’s Hospital.
• Julio V. Santiago, M.D. (1943–1997): Late Professor of Pediatrics and Director of the Pediatric Diabetes Research Training Center at Washington University School of Medicine and St. Louis Children’s Hospital, a pioneering physician-scientist whose clinical trials fundamentally transformed contemporary pediatric diabetes management.

Purpose

The effective daily management of Type 1 Diabetes Mellitus in pediatric populations represents one of the most cognitively demanding, socially intrusive, and unrelenting behavioral regimens in pediatric medicine. Successful self-care necessitates constant vigilance across an extensive spectrum of tasks, including frequent self-monitoring of blood glucose (or interpreting continuous glucose monitoring trends), calculating insulin dosages based on carbohydrate counting and glycemic targets, administering subcutaneous injections or managing continuous subcutaneous insulin infusion (CSII) pumps, identifying and treating acute hypoglycemia, rotating infusion and injection sites, and balancing athletic exercise with caloric intake. As children transition into middle childhood and adolescence, the locus of responsibility for these complex behavioral regimens inevitably shifts from primary caregivers to the developing youth.

Historically, clinical practice frequently assumed that this transfer of autonomy unfolded linearly and without adverse consequences. However, pediatricians and behavioral scientists observed that premature delegation of self-care to young adolescents often catalyzed significant regimen deterioration, poor metabolic control, and frequent hospitalizations for diabetic ketoacidosis (DKA). Conversely, prolonged, intrusive parental control when an adolescent sought normative independence frequently sparked coercive family interactions, heightened family conflict, and covert non-adherence. The Diabetes Family Responsibility Questionnaire (DFRQ) was created specifically to operationalize, quantify, and clarify this intricate family dynamic.

The primary clinical and empirical purposes of the DFRQ encompass:

• Mapping the Division of Regimen Labor: Systematically determining whether specific tasks are managed exclusively by the parent, managed exclusively by the adolescent, or cooperatively shared between parent and youth.
• Detecting Dyadic Incongruence / Informant Discrepancies: Quantifying differences between parent and child perceptions. Incongruence (e.g., when a mother assumes her 13-year-old child is tracking blood glucose and logging entries, whereas the child assumes the parent is keeping track, leading to a void where tasks are entirely neglected) serves as an acute red flag for non-adherence and medical risk.
• Preventing Premature Parental Withdrawal: Serving as an objective psychoeducational assessment that identifies tasks inappropriately delegated to an adolescent who lacks the executive functioning or emotional maturity required for independent execution.
• Informing Family-Centered Interventions: Guiding targeted clinical interventions—such as behavioral family systems therapy, coping skills training, and shared-decision-making protocols—to establish collaborative, non-punitive responsibility agreements that safeguard metabolic health while fostering developmentally appropriate autonomy.
• Facilitating Longitudinal and Epidemiological Research: Providing developmental researchers with an established, standardized metric to track trajectories of self-care responsibility transfer across childhood, puberty, and emerging adulthood.

Psychological Construct

The core psychological construct measured by the DFRQ is family allocation of disease-specific responsibility within the systemic context of pediatric chronic illness. Rather than evaluating generic parental warmth or global family cohesion, the DFRQ targets behavioral ownership and operational execution of health-maintenance activities.

This overarching construct is subdivided into two distinct, empirically validated behavioral domains:

1. Direct Health / Management Tasks

This subscale assesses physiological and pharmacological tasks that immediately determine acute metabolic homeostasis and glycemic control. Tasks falling under direct management are physiologically sensitive, technically complex, and carry immediate consequences for glycemic stability. Exemplars include:

• Calculating and adjusting insulin dosages based on blood glucose readings or urine ketone results.
• Administering insulin injections or programming insulin pump boluses.
• Recognizing the neuroglycopenic and autonomic early signs of hypoglycemia (insulin reactions) and taking immediate corrective action.
• Consistently performing and logging blood glucose measurements at required intervals throughout the day and night.
• Rotating injection and continuous infusion set sites to prevent lipohypertrophy and variable insulin absorption.

Developmentally, direct management tasks represent the most hazardous arena for premature autonomy transfer. When parents prematurely step back from direct tasks, glycemic control often deteriorates rapidly.

2. Indirect Health / Regimen Tasks

This subscale captures structural, social, environmental, and administrative behaviors that support the broader medical regimen. These behaviors provide the social infrastructure and physical resources necessary for diabetes maintenance without directly altering circulating insulin or glucose levels in real time. Exemplars include:

• Remembering and scheduling clinic appointments with pediatric endocrinologists, dentists, and allied health providers.
• Communicating diabetes needs and emergency hypoglycemia protocols to school teachers, school nurses, and relatives.
• Discussing illness management with peers and navigating social dining when eating out at restaurants or friends’ homes.
• Monitoring inventory, checking expiration dates on test strips and glucagon kits, and procuring medical supplies.
• Carrying rapid-acting carbohydrates (e.g., glucose tablets, juice boxes) when away from home.
• Explaining diabetes-related school absences to academic administrators.

In typical development, indirect tasks such as social disclosure to peers and carrying snacks are assumed by youth earlier than administrative logistics such as scheduling medical appointments, which parents often maintain well into late adolescence.

3. Dyadic Discrepancy and Congruence (Derived Construct)

An essential derivative construct captured by the DFRQ is the parent-child discrepancy index. By computing absolute difference scores (|Parent Score − Child Score|) across paired items, researchers assess the degree of dyadic divergence. High discrepancy indicates poor family communication, mismatched expectations, and cognitive disconnect, whereas high congruence reflects harmonious, synchronized awareness of health roles.

Theoretical Framework

The DFRQ is grounded at the nexus of developmental psychology, family systems theory, and behavioral medicine.

Developmental Systems Theory and Autonomy Transition

Central to the conceptualization of the DFRQ is Erik Erikson’s and later developmental theorists’ formulation of adolescent autonomy and individuation. During adolescence, young individuals seek psychological independence from parental authority. In healthy populations, this transition involves renegotiating parental boundaries. However, in pediatric Type 1 diabetes, normative developmental demands collide directly with the rigorous, rigid demands of chronic disease management.

As Anderson and Wolpert (2004) posited, the transfer of diabetes responsibility cannot follow a simple, unilateral “handing off” model. If autonomy is granted precipitously—often mistaken by parents for maturity when a child acquires the physical dexterity to self-inject—adolescents are overwhelmed by the cognitive and emotional burden. The DFRQ embodies the developmental principle that successful transition requires interdependence rather than abrupt independence: an extended period of scaffolding where parents remain active, supportive partners in care.

Family Systems Theory and Dyadic Reciprocity

Grounded in Salvador Minuchin’s structural family systems framework, the DFRQ views pediatric diabetes management not as an isolated individual behavior, but as a transactional family process. Minuchin demonstrated that psychosomatic and chronic pediatric illnesses are deeply intertwined with family subsystem boundaries, hierarchy, and enmeshment or disengagement.

When family subsystems maintain clear, flexible boundaries, parents and youth function as a collaborative team. When boundaries are misaligned, two destructive patterns emerge:

• Parental Disengagement / Premature Independence: The parent vacates the supervisory role, leaving the child isolated with complex self-care tasks, leading to omission of insulin, erratic monitoring, and dangerous metabolic decompensation.
• Over-involvement / Enmeshment: Parents micromanage without fostering adolescent input, triggering oppositional defiance, psychological reactance, and covert non-adherence.

The DFRQ provides empirical operationalization of these systemic boundaries by tracking whether tasks are handled unilaterally by one subsystem or negotiated across the generational boundary.

Validity

The psychometric validity of the DFRQ has been evaluated across diverse cross-sectional, longitudinal, and clinical trial cohorts over three decades of pediatric diabetes research.

Construct and Known-Groups Validity

In the seminal validation study by Anderson et al. (1990), administered to 85 youth with T1D (aged 6 to 21 years) and their mothers, the DFRQ demonstrated exceptional construct validity across chronological age. As hypothesized by developmental theory, adolescent age correlated significantly and positively with adolescent self-care responsibility on both Direct Management tasks (r = .66, p < .001) and Indirect Regimen tasks (r = .71, p < .001). Young children (ages 6–11) reported predominantly parent-dominated or shared responsibility, whereas older adolescents (ages 16–21) reported predominantly independent execution.

Crucially, known-groups validity confirmed that the rate of autonomy transfer differed across task categories: indirect social tasks (e.g., carrying sugar, telling friends) were assumed by youth at significantly younger ages than complex clinical tasks (e.g., adjusting insulin doses, examining feet), proving that the DFRQ distinguishes fine-grained developmental gradations rather than capturing a blunt, monolithic construct.

Convergent Validity

Convergent validity has been established by correlating DFRQ responsibility scores with standardized measures of family interaction, behavioral adherence, and glycemic control:

• Adherence Correlation: Higher adolescent independent responsibility in early-to-mid adolescence (ages 10–14) significantly correlates with poorer adherence, as measured by 24-hour recall interviews and meter download data. When adolescents handle regimen tasks entirely alone, self-monitoring of blood glucose frequency declines markedly (Vesco et al., 2010).
• Metabolic Health (HbA1c): Research by Anderson et al. (2002) and Hood et al. (2007) demonstrated that shared responsibility (scores approximating 2.0) consistently associates with significantly lower HbA1c values (optimal glycemic control) compared to youth who carry sole responsibility (scores approaching 3.0) or youth experiencing parental over-involvement in late adolescence.
• Correlation with Diabetes Family Conflict: Paired comparisons using the Diabetes Family Conflict Scale (DFCS) demonstrate that dyadic DFRQ discrepancy scores (where parents and adolescents hold conflicting views of who handles specific tasks) correlate positively with high diabetes-specific conflict (r = .38 to .47, p < .01).

Predictive and Longitudinal Validity

Longitudinal studies demonstrate that early parental abandonment of direct responsibility prospectively predicts elevated HbA1c trajectories over 1-to-3-year follow-ups. Interventions that preserve parental involvement without generating conflict buffer youth against the typical pubertal deterioration in metabolic control.

Reliability

The DFRQ possesses robust internal consistency and temporal stability across diverse pediatric and adolescent cohorts.

Internal Consistency

In the original validation cohorts (Anderson et al., 1990), internal consistency was calculated separately for mother and youth reports across both subscales:

• Direct Management Tasks Subscale:
  • Youth Report: Cronbach’s $\alpha = .84$
  • Mother Report: Cronbach’s $\alpha = .85$
• Indirect Regimen Tasks Subscale:
  • Youth Report: Cronbach’s $\alpha = .69$
  • Mother Report: Cronbach’s $\alpha = .70$
• Full Scale Total Score: Overall Cronbach’s alphas across combined items consistently exceed $\alpha = .80$ in subsequent validation studies (Vesco et al., 2010; Hood et al., 2007).

The slightly lower alpha for Indirect Tasks reflects the functional heterogeneity of items comprising this factor (which spans clinic scheduling, school communications, and peer dynamics), whereas Direct Tasks reflect a tightly coupled physiological self-care routine.

Test-Retest Stability and Inter-Rater Agreement

Temporal stability evaluated across 2-to-4-week test-retest windows in clinically stable youth yielded intraclass correlation coefficients (ICCs) ranging between .78 and .88, confirming high measurement reliability.

Inter-rater agreement between mothers and youth across individual items yielded moderate-to-high concordance (median kappa coefficients $kappa = .48$ to $.65$; percentage agreement ranging from 60% to 85% across items). Discrepancy occurs predictably around unobservable cognitive tasks (e.g., remembering clinic visits, noticing subtle hypoglycemia symptoms), underscoring the clinical necessity of gathering independent, dual-informant ratings.

Factor Analysis

The dimensional structure of the DFRQ was established via rigorous exploratory factor analysis (EFA) and later corroborated through confirmatory factor analytic (CFA) modeling.

Exploratory Factor Analysis (EFA)

In the original 17-item scale development (Anderson et al., 1990), principal components analysis with varimax orthogonal and oblimin oblique rotations yielded a definitive two-factor solution, explaining approximately 42% to 48% of the total variance across both parent and child cohorts. The two factors emerged with clear conceptual boundaries:

• Factor 1: Direct Health / Management Tasks (Items accounting for the largest share of variance, ~28%): High loadings ($ge .45$) were observed for items requiring direct biochemical manipulation and monitoring: taking/adjusting insulin according to test results, administering injections, rotating injection sites, noticing hypoglycemia symptoms, and remembering blood glucose testing times.
• Factor 2: Indirect Health / Regimen Tasks (Items accounting for ~15%–19% of variance): High loadings ($ge .40$) emerged for social navigation, appointment administration, and supply logistics: informing teachers, telling relatives, scheduling doctor/dentist visits, carrying emergency sugar, explaining school absences, and inspecting foot wear.

Confirmatory Factor Analysis (CFA) and Scale Adaptations

Subsequent psychometric evaluations during the mid-2000s and 2010s (Hood et al., 2007; Vesco et al., 2010) tested the stability of the two-factor model when incorporating modern technological evolutions in diabetes care—specifically continuous insulin pumps (CSII) and automated blood glucose memory logs. CFA confirmed that modern items (e.g., “giving shots or boluses (pump)”, “logging blood sugar results”, “rotating infusion sets”) map cleanly onto the primary Direct Management latent construct.

Fit indices from structural equation models confirmed good-to-adequate fit for the two-factor model: Root Mean Square Error of Approximation (RMSEA) $le .06$, Comparative Fit Index (CFI) $ge .92$, and Tucker-Lewis Index (TLI) $ge .90$. Cross-loading between direct and indirect items remained low, confirming structural stability across diverse child age bands.

Instrument / Measurement Tool

• Instrument Name: Diabetes Family Responsibility Questionnaire (DFRQ)
• Primary Author: Barbara J. Anderson, Ph.D., et al. (1990)
• Construct Measured: Distribution, sharing, and assignment of diabetes self-management responsibilities between parents and children/adolescents; dyadic discrepancy in perceived responsibility.
• Target Population: Children and adolescents with Type 1 Diabetes Mellitus aged approximately 6 to 18 years, and their primary caregivers (mothers, fathers, or legal guardians).
• Administration Format: Dual-informant self-report questionnaire (parallel versions administered independently to child and parent to prevent contamination). Paper-and-pencil or secure computerized/tablet digital administration.
• Administration Time: Approximately 5 to 10 minutes per respondent.
• Item Count: 17 core items in original 1990 publication; extended to 19 items in updated contemporary versions to account for technological and systemic regimens (e.g., logging glucose readings, continuous infusion sets).
• Subscales:
  • Direct Health / Management Tasks: Direct biomedical self-care actions (insulin administration, glucose checking, hypoglycemia detection).
  • Indirect Health / Regimen Tasks: Social communication, appointment scheduling, supply tracking, and school-related coordination.
• Response Format: A 3-point categorical rating scale:
  • 1 = Parent(s) took or initiated responsibility for this almost all of the time
  • 2 = Parent(s) and I shared responsibility for this about equally
  • 3 = I took or initiated responsibility for this almost all of the time
• Scoring and Interpretation:
  • Mean Subscale Scores: Calculated by averaging item scores within Direct Tasks and Indirect Tasks (scores range from 1.0 to 3.0). Scores near 1.0 indicate complete parental dominance; scores near 2.0 indicate balanced shared responsibility; scores near 3.0 indicate exclusive adolescent responsibility.
  • Total Responsibility Score: Sum or mean of all completed items across the scale.
  • Dyadic Discrepancy Score: Computed by taking the absolute mathematical difference between matched parent and child items ($|\text{Item}_{\text{Parent}} – \text{Item}_{\text{Child}}|$). Discrepancy scores can be summed into a cumulative Dyadic Discordance Index. Higher discrepancy indicates severe perceptual divergence regarding which family member is executing critical medical behaviors.

Permissions & Fee and Test Year

The Diabetes Family Responsibility Questionnaire was originally published in 1990 in the Journal of Pediatric Psychology (Oxford University Press / Society of Pediatric Psychology). The instrument was developed under academic research grants from the National Institutes of Health (NIH, including National Institute of Diabetes and Digestive and Kidney Diseases – NIDDK).

• Fee: The DFRQ is non-commercial and available free of charge for non-profit clinical, educational, and academic research purposes.
• Permissions & Access: The scale items are published openly in the peer-reviewed medical literature (Anderson et al., 1990; Hood et al., 2007). Researchers and clinicians seeking to employ, adapt, or digitize the DFRQ in formal clinical trials or institutional protocols typically obtain authorization or notify the corresponding scale developers (Dr. Barbara J. Anderson, Baylor College of Medicine) or cite the seminal 1990 Journal of Pediatric Psychology validation publication in adherence to standard academic fair-use guidelines. Commercial re-distribution requires formal copyright clearance via Oxford University Press or the respective journal publishers.

References

• Anderson, B. J., Auslander, W. F., Jung, K. C., Miller, P., & Santiago, J. V. (1990). Assessing family sharing of diabetes responsibilities. Journal of Pediatric Psychology, 15(4), 477–492. https://doi.org/10.1093/jpepsy/15.4.477
• Anderson, B. J., & Brackett, J. (2000). Diabetes during childhood. In F. J. Snoek & T. C. Skinner (Eds.), Psychology in Diabetes Care (pp. 1–23). Chichester: John Wiley & Sons.
• Anderson, B. J., Vangsness, L., Connell, A., Butler, D., Goebel-Fabbri, A., & Laffel, L. M. B. (2002). Family conflict, adherence, and glycaemic control in youth with short duration Type 1 diabetes. Diabetic Medicine, 19(8), 635–642. https://doi.org/10.1046/j.1464-5491.2002.00752.x
• Anderson, B. J. (2004). Family conflict and diabetes management in youth: Clinical lessons from child development and diabetes research. Diabetes Spectrum, 17(1), 22–26. https://doi.org/10.2337/diaspect.17.1.22
• Anderson, B. J., & Wolpert, H. A. (2004). A developmental perspective on the challenges of diabetes education and care during the young adult period. Patient Education and Counseling, 53(3), 347–352. https://doi.org/10.1016/j.pec.2004.02.013
• Hood, K. K., Butler, D. A., Anderson, B. J., & Laffel, L. M. B. (2007). Updated and revised Diabetes Family Conflict Scale. Diabetes Care, 30(7), 1764–1769. https://doi.org/10.2337/dc06-2539
• Andreassen, H. K. (2009). Separation-Individuation and its Effect on Diabetes Management and Diabetes Control in Young Women with Type 1 Diabetes (Doctoral dissertation, Victoria University). http://vuir.vu.edu.au/15507/1/Andreassen2009.pdf
• Vesco, A. T., Anderson, B. J., Laffel, L. M. B., Dolan, L. M., Ingerski, L. M., & Hood, K. K. (2010). Responsibility sharing between adolescents with Type 1 diabetes and their caregivers: Importance of adolescent perceptions on diabetes management and control. Journal of Pediatric Psychology, 35(10), 1168–1177. https://doi.org/10.1093/jpepsy/jsq039

Items of the Scale