The Family Impact of Attention Deficit Hyperactivity Disorder (ADHD)

Attention deficit hyperactivity disorder (ADHD) is a common behavioural disorder with widespread implications on schooling and academic performance, home life, peer relationships and social-emotional development.

Attention deficit hyperactivity disorder (ADHD) is currently the most frequently diagnosed behavioural disorder in children, affecting 3-5% of those school aged.¹ It is characterised by inattention, hyperactivity and impulsivity.² The impact of this disorder is widespread affecting not only schooling and academic performance but also home life, peer relationships and social-emotional development.¹ Educational problems are a key feature of ADHD and it is these issues that in many cases bring the child to clinical attention. Children affected by ADHD have impaired global and specific mental functions as well as problems sequencing complex movements. They can be limited by reading, writing and calculating disabilities as well as difficulty with general tasks and demands, communication disorders, mobility limitations, poor self care and unsuccessful or unsatisfying interpersonal interactions and relationships. As a result they are disadvantaged in the major life areas of education, community, social and civic life.² 

Michele Toner, President of the Learning and Attentional Disorders Society in Western Australia said, "The primary concern of parents when their child is diagnosed with ADHD is how best to inform their teacher and the school. Support organisations such as LADS (The Learning and Attentional Disorders Society of Western Australia) help with that. Socialisation is also a big concern. Parents are often concerned the child doesn’t have friends, and are keen for information as to how to assist the child to make social inroads. Parents also want information regarding research related to any aspect of ADHD."

The extra demands of assisting a child with ADHD to maintain academic standards can cause enormous stress. Ms Toner said, "Homework can be a nightmare. An academic tutor specialising in ADHD reported that homework causes as much trouble in the ADHD families as financial problems."

Extra time is also spent liaising with the teachers in order to optimise the child’s management. Professor Stephen Houghton, Director of the Centre for Child and Adolescent Related Disorders at the University of Western Australia, and author of over 100 published journal articles said "Teachers’ knowledge regarding ADHD is variable. Younger teachers often have greater understanding of the condition, and some manage it extremely well. Recent research indicates that parents tend to know more about the condition than teachers."

Longitudinal studies have shown that the academic and educational problems faced by children with ADHD are persistent. Although the initial symptoms of inattention, hyperactivity, impulsivity and aggression do tend to decrease in severity, they remain increased compared to controls.² Longitudinal studies have also shown us that as these children approach adulthood, they commonly fall into 1 of 3 major groups:³

• the majority have continued functional impairment, limitations in learning and applying knowledge, and restricted social participation;
• ~25% eventually function comparably to matched normal controls;
• < 25% develop significant, severe problems, including psychiatric and/or antisocial disturbance.

It is unclear what factors determine the long-term outcomes.²

Families of children with ADHD have to contend with a greater number of behavioural, developmental and educational disturbances than those families without ADHD.⁴ This requires greater time, logistical demands and energy to be spent within these families. It is not surprising that these increased demands are associated with increased stressors to marital and family functioning.² Added to these difficulties is the financial burden of treating ADHD and its associated psychiatric disorders on the household income.⁵ 

Professor Houghton said, "It may take up to 6 months to 2 years for a child to be assessed by a school psychologist. Privately, an assessment may cost around $1000-$1500. There is then often the cost of further assessments, any involvement with allied health professionals such as occupational therapists and audiologists."

Ms Toner further outlines some of these issues: "ADHD can cause a lot of stress in a family. Parents spend a lot of time and money managing ADHD. Often professional mothers reduce their working hours or give up work completely in order to be available to support their children. This results in less income for the family. Things may not be going well at school, and things may be going badly in the home.

"These children are often socially isolated. They may not be getting invited to birthday parties, and are often struggling in the playground due to inappropriate behaviours such as talking too much, or not understanding social cues."

When family environments are chronically stressful both the adults and children are at greater risk for both physical and mental health problems.⁴ Marital conflict is no exception and has been consistently linked with poorer health and mental outcomes. In families affected by ADHD marital conflict is common, especially where ADHD and oppositional disorders co-exist.⁶ Ms Toner said, "There are high rates of separation and divorce in families of children with ADHD. If parents themselves also have ADHD, it makes the situation worse."

Although the causal mechanisms are still yet to be explained some have put forward that marital conflict might reduce a child’s sense of safety and security from their home environment, upset parent-child relationships, add to inconsistent discipline, decrease parental monitoring of potentially dangerous behaviours, or more directly act as a platform for aggressive social interactions.⁴

ADHD can also have a significant impact on siblings of children with ADHD. Professor Houghton said, "Given the genetic component of ADHD, there is an increased likelihood that a sibling of a child with ADHD may also have the condition. Even if the sibling does not have the condition, they may become the disabled one in the family. There can be a lot of tension in the household as a result of ADHD behaviours, and the sibling is often required to take additional responsibility for things. The sibling may also be put in the same boat as the brother or sister with ADHD, or be unintentionally neglected because of the additional attention necessary for the child with ADHD. For example, if a child with ADHD is given positive reinforcement for good behaviour, then often the sibling can be left out."

Professor Houghton suggests the following approach to addressing these issues, "It is a case of ensuring siblings are aware of what ADHD is, so they understand why their brother or sister behaves the way they do, and why the parents manage it in a certain way. Make sure the sibling doesn’t ‘lose out’ in terms of things the child with ADHD receives. Unfortunately, finding programs to assist siblings of children with ADHD is very difficult."

Despite the above, it has been shown that parenting stress can be reduced and family relationships improved if parent training is incorporated as a part of management.⁴

Support organisations are also an invaluable resource in terms of information and community links. Ms Toner said, "Parents benefit from the support provided at events such as Parents Coffee Mornings at support organisations. They meet other parents in similar situations, and can discuss their difficulties without being judged."

Optimal management of ADHD should incorporate:⁷

• patient education;
• psychosocial interventions; and
• medication management.

Patient education involves providing patients and their families with a brief summary regarding epidemiology, aetiology and pathogenesis. Understanding that ADHD is a medical disorder may help not only de-stigmatise the diagnosis but also reassure parents that their particular parenting style or life situation did not cause it.⁷

Dr Wilkins (MBBS FRACP MPH) a Community Paediatrician at the Koondoola Child Development Centre said "Parent education is an essential part of management. Parents need to learn about the symptoms of ADHD, the impact on the child’s functioning, how to assist the child in learning and development, how to manage behaviour and how to engage and communicate with other professionals e.g teachers in their child’s care."

Psychosocial interventions include parent training and school based interventions. Parent training is a form of cognitive behavioural therapy. Commonly it includes education about ADHD, understanding of parent-child relationships, how to communicate effectively, encouraging positive behaviours and providing motivation as well as introducing strategies for misbehaviour.⁷

School based interventions are designed to complement what is being implemented in the home environment. It may include teacher education, similar to parent training, as well as school specific strategies such as providing an overview of learning exercises, doing academic work in smaller chunks with the majority to be completed before lunch and extra breaks. This is designed to create consistency between school and home environments in order to achieve optimal outcomes.⁷

Medical management comes in the form of stimulant and non-stimulant medications. Each have affects on the catecholamine neurotransmitters dopamine (DA) and noradrenalin (NA).

The majority of clinical trials over the past five decades have investigated the use of MPH short-term (often < 3 months duration) in children aged between 6-12 years.⁷ The results showed a large number of children (73-77%) with ADHD responded to the stimulant medication. Of those 25-30% of children who did not respond or did not tolerate the drug, many demonstrated a clinical response if a second stimulant medication was tried. The benefits of stimulant medication included relief of symptoms, improved overall behaviour, social functioning, interpersonal relationships and academic performance.⁸

Amphetamines, mixed amphetamine salts (MAS) and Methylphenidate hydrochloride (MPH) are all available orally with MPH also available in a transdermal patch (Daytrana). Oral formulations are available in immediate (eg Ritalin) and intermediate-release (eg Ritalin SR) and long acting preparations (eg Concerta).⁹

Current prescribing practices favour the extended release preparations (eg Concerta) as these not only offer increased convenience with once daily dosing and hence improved compliance but also improved tolerability.⁹ This type of dosing also alleviates the need for children to take medication within school hours. It is important that an optimal dose, maximum therapeutic benefit with minimal side effects, be reached for every individual. It is recommended that small doses are used initially and titrated up every 3-5 days until a therapeutic benefit is seen or until side effects prevent the use of higher doses.⁷

Common side effects of stimulants include insomnia, anxiety, anorexia, dry mouth, headaches, abdominal pain, and increases in heart rate and blood pressure. Several clinicians are also concerned about growth retardation, tics, addictive potential, sudden cardiac death and exacerbating psychosis. If patients have any of the following: coronary artery disease, structural heart disease, cardiomyopathy, history of arrhythmias, glaucoma, untreated hypertension, severe tic disorders, Tourette’s syndrome, active substance use disorder, or current monoamine oxidase inhibitor use, the use of stimulant medication in contraindicated.⁷ Dr Wilkins said she is "most concerned about the possible cardiac side-effects although rare."

Sudden cardiac death became a major concern following the reporting of 12 cases in children prescribed Adderall XR (not available in Australia), a long acting MAS to the Food and Drug Administration between 1999 and 2003. Most of the children involved had either structural or congenital heart defects, family history of cardiac arrhythmias, or other situations where the risk of sudden cardiac death was increased independent of the use of Adderall. The FDA subsequently reported that ‘‘it does not appear that the number of deaths reported is greater than the number of sudden deaths that would be expected to occur in this population without treatment”.¹⁰ It issued a ‘‘black box” warning for the use of Adderall in patients where cardiac problems are known. Clinicians are also advised that in the evaluation of ADHD, one should seek a thorough screening for personal and family history of cardiovascular disease.⁷

Nonstimulant medication used in the treatment of ADHD consists of several different classes of medications including atomoxetine (eg Strattera), bupropion (eg Zyban), modafinil (eg Modavigil), venlafaxine (eg Efexor), clonidine (eg Catapres), tricyclic antidepressants, and monoamine oxidase inhibitors. Mostly their use is limited to patients that either do not respond or cannot tolerate side effects of stimulant medication.⁷

Currently atomoxetine is the only nonstimulant approved for use in ADHD. It is a potent inhibitor of the NA transporter system and is thought to be helpful in patients with comorbid tics, anxiety, depression and substance use disorders. Its effectiveness in treating the core symptoms of ADHD have been shown in all aged children to adult.⁷ However Dr Wilkins commented that "I have used atomoxetine in only a couple of patients and it has not been effective."

Common side effects of atomoxetine include gastrointestinal upset, headaches and fatigue as well as increases in heart rate and blood pressure. Rarely patients may develop liver toxicity or increased suicidal thoughts. Liver toxicity has occurred in 2 of 2,000,000 prescriptions and was reversible on ceasing the medication. While increased suicidal thoughts occurred in 0.4%, there were no attempted or completed suicides. However, it is important to counsel patients and their families about the potential risk when using any drug.⁷

Attention deficit hyperactivity disorder (ADHD) is a common behavioural disorder that can occur in children, adolescents or adults. It is characterised by inattention, hyperactivity and impulsivity. Almost all aspects of life are impacted by the disorder. Children experience many school-based problems and often peer rejection as well as stress from within the family. Optimal management should incorporate patient education, psychosocial interventions and medical therapy where appropriate. Medication is usually in the form of stimulant medication, including methylphenidate (MPH), amphetamine, and mixed amphetamine salts (MAS), which have effects on the catecholamines dopamine (DA) and noradrenaline (NA). It is important, as with any other medication, that the optimal dose is reached for the individual, this is the dose which gives maximum therapeutic benefit with minimal side effects.

References 

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