Stress and the Home Environment in Caregivers of Children with Sickle Cell

Author:

Varughese Taniya E1ORCID,Hoyt Catherine R1,L’Hotta Allison J1,Ikemenogo Princess A2,Howdeshell Seth G34,Housten Ashley J5,Abel Regina A1,King Allison A6

Affiliation:

1. Program in Occupational Therapy, Washington University School of Medicine

2. Meharry Medical College

3. Department of Medicine, University of Iowa Hospitals and Clinics

4. Department of Psychiatry, University of Iowa Hospitals and Clinics

5. Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine

6. Program in Occupational Therapy, Division of Hematology and Oncology, Department of Pediatrics, Washington University School of Medicine, St. Louis Children’s Hospital

Abstract

Abstract Objective Caregivers of young children with chronic illnesses are at high risk for elevated levels of stress and mental health symptoms. This study examined stress and mental health symptoms as well as the socioeconomic status (SES) and home environments of a cohort of caregivers of infants and toddlers with sickle cell disease (SCD). Methods Forty-two caregivers of infants and toddlers (aged 1–34 months) with SCD completed the Brief Symptom Inventory (BSI) and Parent Stress Index (PSI). The Home Observation for Measurement of the Environment (HOME) was used to assess family living environments. Results Compared to test norms, caregivers reported high levels of situational/demographic life stress [mean difference (MD) 5.7, p = .003] and child distractibility/hyperactivity (MD 3.62, p = .001) on the PSI. However, no significant differences in psychological symptoms of distress were noted on the BSI. Caregivers scored significantly lower than norms on PSI subdomains of acceptability (MD −1.88, p = .03), competence (MD −3.11, p = .002), depression (MD −3.94, p < .001), and the overall parent domain (MD −12.55, p = .005). Significant correlations were found between PSI scores and the HOME and between SES and the HOME. Conclusion Caregivers of infants and toddlers with SCD experience elevated levels of life stress but, in turn, endorse high acceptance of their child and self-competence in parenting. Although life stress may be high in this population, symptoms of psychological distress were not identified. Caregivers reporting elevated life and illness-specific stressors may benefit from environmental supports and interventions.

Funder

Human Resources and Services Administration

HRSA

Genetic Services Branch of the Maternal and Child Health Bureau

Institute for Public Health

Publisher

Oxford University Press (OUP)

Subject

Developmental and Educational Psychology,Pediatrics, Perinatology, and Child Health

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