Mónica C. Nieves-Molina, HSDG, Amanda S. Varona-Negrón, HSDG, Carlos, J. Ríos-Miranda, HSDG, Sebastián A. Quintana-Rodriguez, HSDG, Alejandra S. Cuff-Morales, HSDG, Paola M. Rivera-Arroyo, HSDG, Laura La Luz-Barrios, HSDG, Marleana M. Rolón-Sanfeliz, BA, Eduardo Cumba-Avilés, PhD, & María I. Jiménez-Chafey, PsyD
Institute for Psychological Research, College of Social Sciences, University of Puerto Rico, Río Piedras Campus, Sam Juan, Puerto Rico

INTRODUCTION: Caring for an adolescent with type 1 diabetes (T1D) is associated with significant challenges. However, the nature of these challenges/difficulties has not been explored in depth. We examined the specific content of caregivers’ challenges and barriers when facing T1D in their offspring and the relationship between reports of multiple barriers and health-related outcomes.

METHOD: Participants were 65 Hispanic caregivers (81.54% women) aged 32–58 (M=43.34) who completed an eligibility assessment for an adolescent depression treatment study. Caregivers answered an open-ended question regarding their main difficulties about T1D in their children (aged 12-17 years). We identified the main themes of parental challenges and coded responses using categories defined based on their content. We used Chi-square test, Student t-tests and Pearson correlation to assess the relationship between reports of multiple barriers and health-related outcomes (p≤.05).

RESULTS: Caregiver’ responses produced 89 codable units. Inter-rater agreement between two coders was excellent (κ=.97). Categories of challenges/difficulties and their occurrence were: “Social or Structural Barriers” (22.47%), “Cognitive/Affective Aspects in the Family” (30.37%), “Short-Term Complications/Emergency Situations” (15.73%), “Difficulties Related to Follow-up and Relative Responsibility” (8.99%), “Difficulties in Treatment Adherence” (14.61%), “Developmental Stage/Hormonal Aspects” (4.49%), and “No Difficulties” (3.37%), The proportion of caregivers providing responses belonging to these categories was 27.69%, 36.92%, 18.46%, 12.31%, 20.00%, 6.15%, and 4.62%, respectively. Caregivers whose responses contained ≥2 different codes showed more frequent T1D-related worries and had children who checked their glucose levels less frequently and presented higher rates of depressive disorders. Multi-coded responses were associated with a lower frequency of hypoglycemia preventive measures.

CONCLUSION: Our findings suggest that the most frequent parental challenges managing T1D in children relate to psychological aspects of family members and socio-structural barriers to diabetes management. Reports of multiple categories of challenges are indicative of higher rates for depressive disorders and less adherence to T1D self-care.

ACKNOWLEDEMENTS: This study was supported by the National Institute of Diabetes and Digestive and Kidney Diseases (R03DK092547).

IRB APPROVAL NUMBER: 1112-005 (UPR-Río Piedras).

KEYWORDS: Adolescents, caregivers’ difficulties, diabetes self-management, family adaptation to diabetes treatment, Hispanics