Burden sharing in families to children, adolescents and young adults with ADHD: Analysis of ADHD Helpline in Swedish Clinical Services

BACKGROUND: ADHD causes impairment in several life contexts and may increase stress and burden of care amongst family members. There is a lack of studies regarding gender inequalities in burden sharing in families of individuals with ADHD. OBJECTIVE: The aim of this study was to investigate gendered burden sharing in families who were in contact with an ADHD telephone helpline in Sweden. A further aim was to identify perceived difficulties that prompted contact with the helpline. METHODS: During a period of 28 months (from January 2013 to April 2015), calls were consecutively registered by psychologists manning the helpline through an anonymous digital form. After exclusion of 60 incomplete forms out of 1,410 (4%), information on 1,350 calls was analysed. RESULTS: The analysis indicated that mothers (82.7% of all callers) had a more important role as information-coordinators for children or adolescents with ADHD, as compared to fathers (13%) or other callers (4.3%). This pattern was also observed among the calls regarding young adults with ADHD. Helpline calls primarily concerned entitlement to academic support (57.9% of calls concerning children or adolescents) and healthcare services (80.6% of calls concerning young adults and adults). CONCLUSION: The study concludes that a perceived lack of accessibility to and/or coordination of the school and health care services may be a major stressor for parents of individuals with ADHD. The burden of care through coordination of services and information-seeking may be especially increased in mothers of children, adolescents, and young adults with ADHD.