Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom.
OBJECTIVE
There is increasing recognition that autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens. However, research on their impact has focused mostly on the caregivers of young children; few studies have examined caregiver burden as children transition into adolescence and young adulthood, and no one has compared the impact of ASD to other neurodevelopmental disorders (e.g., ADHD).


METHODS
We conducted an observational study of 192 families caring for a young person (aged 14 to 24 years) with a childhood diagnosis of ASD or ADHD (n = 101 and n = 91, respectively) in the United Kingdom. A modified stress-appraisal model was used to investigate the correlates of caregiver burden as a function of family background (parental education), primary stressors (symptoms), primary appraisal (need), and resources (use of services).


RESULTS
Both disorders were associated with a high level of caregiver burden, but it was significantly greater in ASD. In both groups, caregiver burden was mainly explained by the affected young person's unmet need. Domains of unmet need most associated with caregiver burden in both groups included depression/anxiety and inappropriate behavior. Specific to ASD were significant associations between burden and unmet needs in domains such as social relationships and major mental health problems.


CONCLUSIONS
Adolescence and young adulthood are associated with high levels of caregiver burden in both disorders; in ASD, the level is comparable to that reported by persons caring for individuals with a brain injury. Interventions are required to reduce caregiver burden in this population.
Institute of Psychiatry, King's College London, UK.
Tim
T
Cadman
Hanna
H
Eklund
Deirdre
D
Howley
Hannah
H
Hayward
Hanna
H
Clarke
James
J
Findon
Kiriakos
K
Xenitidis
Declan
D
Murphy
Philip
P
Asherson
Karen
K
Glaser
D000293:Adolescent; D000367:Age Factors; D001289:Attention Deficit Disorder with Hyperactivity / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000523:psychology*; D017281:Cost of Illness; D004522:Educational Status; D005260:Female; D006295:Health Resources; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D006113:United Kingdom; D055815:Young Adult