The Family Impact of Attention Deficit Hyperactivity Disorder (ADHD)

Attention deficit hyperactivity disorder (ADHD) is a common behavioural disorder, affecting 3-5% of school aged children. The main features of this disorder are inattention, hyperactivity and impulsivity. The impact of this disorder is widespread affecting not only schooling and academic performance but also home life, peer relationships and social-emotional development.

Educational problems are a key feature of ADHD and it is these problems that in many cases bring the child to the doctor’s attention. Children affected by ADHD have various impairments, limitations and restrictions that negatively influence their academic performance. They may have problems with sequencing complex movements, be limited in their reading, writing and calculating skills as well as have troubles with general tasks, self care and interpersonal interactions and relationships.

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."

Scientific studies that have followed children with ADHD across time have shown that the academic and educational problems they face are long standing. Although the initial symptoms of inattention, hyperactivity, impulsivity and frequently aggression do tend to decrease in severity, they remain increased compared to children who do not have ADHD. These studies have also shown us that as these children approach adulthood, they commonly fall into 1 of 3 major groups:

• ~25% eventually function comparably to those without ADHD;
• most have continued functional impairment, limitations in learning and applying knowledge, and restricted social participation;
• < 25% develop significant problems.

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

Families of children with ADHD have to contend with a greater number of behavioural, developmental and educational disturbances than those families without ADHD. 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. Added to these difficulties is the financial burden of treating ADHD and its associated psychiatric disorders on the household income. 

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. Then, there is the cost of further assessments, such as occupational therapy and auditory assessments."

Ms Toner said, "ADHD can cause a lot of stress in a family. Parents spend a lot of time and money managing ADHD. Often professional mothers work full time at home, or volunteering at support organisations. This usually results in less family income. 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 taking anything in."

When family environments are chronically stressful, both the adults and children are at greater risk for both physical and mental health problems. In families affected by ADHD marital conflict is common and has been consistently linked with poorer health and mental outcomes. 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."

Some believe that marital conflict can negatively impact a child including reducing the child’s sense of safety and security in 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 behaviours. 

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 will have the condition also. 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, and the sibling often takes responsibility for things. The sibling may also be put in same boat as the child with ADHD, or be unintentionally neglected. For example, if a child with ADHD is given positive reinforcement for good behaviour, the sibling tends to get 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 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.

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:

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

Patient education involves doctors providing patients and their families with correct and up to date information on the disorder, its causes and treatment options. Parents should understand that ADHD is a medical disorder. Parents should be reassured in the knowledge that their particular parenting style or life situation did not cause the condition.

Dr Wilkins 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." She has recommended it for all parents of children with ADHD.

Psychosocial interventions include parent training and school based interventions. Parent training is a form of therapy that commonly 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.

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.

Medical management can be achieved through either stimulant or non-stimulant medication. Both groups act on the same signaling system in the brain. Stimulants are used most frequently. The benefits of stmulant on symptom relief, improved overall behaviour, social functioning, interpersonal relationships and academic performance has been well recorded in many clinical trials. In most of the clinical trials over the past fifty years, between 73-77% of children with ADHD responded to stimulant medication. Of those, 25-30% of children who did not respond or did not tolerate the drug in that trial, many demonstrated a clinical response if a second stimulant medication which was tried.

As with all medications, there is the possibility of side effects, which need to be weighed up with the potential benefit to the patient. Common side effects of stimulant medications include insomnia, anxiety, anorexia, dry mouth, headaches, abdominal pain, and increases in heart rate and blood pressure. Some doctors may also be concerned about uncommon possible side effects such as growth retardation, tics, addictive potential, sudden cardiac death and exacerbating psychosis. However, your health professional will counsel you about these possibilities. There are a number of conditions, such as heart disease and glaucoma that your doctor will ask you about; as if you have any of these this medication is not suitable for you.

Nonstimulant medication consists of several different groups of drugs which provide an alternative to those patients who either do not respond or cannot tolerate side effects of stimulant medication. Your doctor will discuss if these are suitable with you.

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.

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