By V A Harpin
Attention deficit/hyperactivity disorder (ADHD) is a chronic, debilitating disorder which may impact upon many aspects of an individual’s life, including academic difficulties, social skills problems, and strained parent-child relationships. Whereas it was previously thought that children eventually outgrow ADHD, recent studies suggest that 30–60% of affected individuals continue to show significant symptoms of the disorder into adulthood. Children with the disorder are at greater risk for longer term negative outcomes, such as lower educational and employment attainment. A vital consideration in the effective treatment of ADHD is how the disorder affects the daily lives of children, young people, and their families. Indeed, it is not sufficient to merely consider ADHD symptoms during school hours—a thorough examination of the disorder should take into account the functioning and wellbeing of the entire family.
As children with ADHD get older, the way the disorder impacts upon them and their families changes (fig 1). The core difficulties in executive function seen in ADHD result in a different picture in later life, depending upon the demands made on the individual by their environment. This varies with family and school resources, as well as with age, cognitive ability, and insight ofthe child or young person. An environment that is sensitive to the needs of an individual with ADHD and aware of the implications of the disorder is vital. Optimal medical and behavioural management is aimed at supporting the individual with ADHD and allowing them to achieve their full potential while minimising adverse effects on themselves and society as a whole.
The aim of this paper is to follow the natural history of this complex disorder through preschool years, school life, and adulthood and to consider its effect on the family, the community, and society as a whole. In addition, comorbidities and healthcare costs are examined.
Poor concentration, high levels of activity, and impulsiveness are frequent characteristics ofnormal preschool children. Consequently, a high level of supervision is the norm. Even so, children with ADHD may still stand out. In this age group there is often unusually poor intensity ofplay and excessive motor restlessness. Associated difficulties, such as delayed development, oppositional behaviour, and poor social skills, may also be present. If ADHD is a possibility, it is vital to offer targeted parenting advice and support. Even at this early stage parental stress may be huge when a child does not respond to ordinary parental requests and behavioural advice. Targeted work with preschool children and their carers has been shown to be effective in improving parent child interaction and reducing parental stress. A useful review of theavailable evidence and methods is provided by Barkley.
Frequently, difficulties at home or on outings with carers (for example, when shopping, out in thepark, or visiting other family members) also become more apparent at this age. Parents may find that family members refuse to care for the child, and that other children do not invite them to parties or out to play. Many children with ADHD have very poor sleep patterns, and although they appear not to need much sleep, daytime behaviour is often worse when sleep is badly affected. As a result, parents have little time to themselves; whenever the child is awake they have to be watching them. Not surprisingly, family relationships may be severely strained, and in some cases break down, bringing additional social and financial difficulties. This may cause children to feel sad or even show oppositional or aggressive behaviour.
Assessing the quality of life of the child suffering from ADHD is difficult. Behavioural assessments are usually carried out by parents, teachers, or healthcare professionals, and it canusually only be inferred how the child must feel. However, data from self evaluations indicate that children with ADHD view their most problematic behaviour as less within their control and more prevalent than children without ADHD. Participation in a school based, nurse led support group was associated with an increase in self worth in pre-adolescents with ADHD.
Johnston and Mash reviewed the evidence of the effect of having a child with ADHD on family functioning. They concluded that the presence of a child with ADHD results in increased likelihood of disturbances to family and marital functioning, disrupted parent-child relationships, reduced parenting efficacy, and increased levels of parent stress, particularly when ADHD is comorbid with conduct problems.
In a survey of the mothers and fathers of 66 children, parents of children with ADHD combined and inattentive subtypes expressed more role dissatisfaction than parents of control children. Furthermore, ADHD in children was reported to predict depression in mothers. Pelham et alreported that the deviant child behaviours that represent major chronic interpersonal stressors for parents of ADHD children are associated with increased parental alcohol consumption.
Limited attention has been given to sibling relationships in families with ADHD children. While it has been reported that siblings of children with ADHD are at increased risk for conduct and emotional disorders, a more recent study presenting sibling accounts of ADHD identified disruption caused by symptoms and behavioural manifestations of ADHD as the most significant problem. This disruption was experienced by siblings in three primary ways: victimisation, caretaking, and sorrow and loss. Siblings reported feeling victimised by aggressive acts from their ADHD brothers through overt acts of physical violence, verbal aggression, and manipulation and control. In addition, siblings reported that parents expected them to care for and protect their ADHD brothers because of the social and emotional immaturity associated with ADHD. Furthermore, as a result of the ADHD symptoms and consequent disruption, many siblings described feeling anxious, worried, and sad.
Broader social and family functioning has been assessed using the Child Health Questionnaire (CHQ), a parent rated health outcome scale that measures physical and psychosocial wellbeing. The studies demonstrated that treatment of ADHD with atomoxetine, a new non-stimulant medication for ADHD, resulted in improved perception of quality of life, with improvements being apparent in social and family functioning, and self esteem. Further research assessing the ongoing quality of life for the child and their family following multimodal input is urgently needed.
An excerpt from Archives of Disease in Childhood – An international peer-reviewed journal for health professionals and researchers covering conception to adolescence www.adc.bmj.com to read the full article please click here.
