Carer Burden Amongst Family Members of Young People with An ASD or ADHD

Thursday, May 17, 2012
Sheraton Hall (Sheraton Centre Toronto)
3:00 PM
T. Cadman1, H. Eklund1, D. Howley1, H. L. Hayward1, J. Findon1, H. Clarke1, J. Beecham2, K. Xenitidis3, D. G. Murphy1, P. Asherson4 and K. Glaser5, (1)Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, King's College London, London, United Kingdom, (2)Personal Social Services Research Unit at the LSE, London School of Economics and Political Science, London, United Kingdom, (3)Adult Attention Deficit Hyperactivity Disorder (ADHD) Service, South London and Maudsley NHS trust, London, United Kingdom, (4)MRC Social, Genetic and Developmental Psychiatry, Institute of Psychiatry, Kings College London, London, United Kingdom, (5)Department of Gerontology, Kings College London, London, United Kingdom
Background: Prior work found that caring for young children with Autism Spectrum Disorder (ASD) or Attention Deficit Hyperactivity Disorder (ADHD) is associated with significant psychological burden. While there is considerable evidence to suggest that the impairments associated with these disorders continue into adulthood few studies have examined the psychological impact of caring for young people (adolescents and young adults) with an ASD or ADHD. The lack of suitable services for young people with these conditions implies that much of the responsibility for care falls onto family and friends. Moreover, the little research there is on this issue has largely focused on the impact of maladaptive behaviours and symptomology among the young people with  ASD or ADHD.  Little is known about the relationship between the young person’s level of needs, service use and carer burden. Also, no research has compared levels of burden between two neurodevelopmental disorders such as ASD and ADHD. 

Objectives: To investigate the relationship between the needs and service use of young people with ADHD and ASD and the psychological well-being of family caregivers.

Methods: An observational study was conducted with young people (aged 14 to 24) with ADHD and ASD (n=80 and n=78 respectively; both groups diagnosed using ‘gold-standard’ clinical diagnostic tools such as the ADI and DIVA) and with their parents or partners (usually mothers) (n=81 and n=90 respectively). Face-to-face interviews and questionnaires with young people and their parents were used to assess needs and service use, as well as demographic and health factors including a measure of carer burden among parents (the Zarit Carer Burden Interview, abbreviated version). 

Results: Carers of those with an ASD or ADHD reported high levels of carer burden. Carer-ratings of the young person’s unmet needs were significantly associated with caregiver burden even when emotional and behavioural problems (and the presence of a learning disability) were controlled for. No association was found between the level of recent service use and caregiver burden.

Conclusions: There is a strong relationship between level of unmet needs of the young person and carer burden. This finding has important implications for service provision suggesting that suitable services that meet the needs of adolescents and young adults with autism and ADHD are likely to play an important role in alleviating caregiver burden.

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