Patient Education and Counseling 57 (2005) 96–100 Attention deficit and hyperactivity disorder/learning disabilities (ADHD/LD): parental characterization and perception Uzi Brook a,∗, Mona Boazb a Department of Pediatrics, Sackler Faculty of Medicine, Edith Wolfson Medical Center, Tel Aviv University, P.O. Box 5, Holon 58100, Israel b Epidemiology Unit and the Institute for Cardiovascular Research, Sackler Faculty of Medicine, Edith Wolfson Medical Center, Tel Aviv University, Holon 58100, Israel Received 12 November 2003; received in revised form 5 February 2004; accepted 4 March 2004 Abstract Sixty-six parents of adolescents (mean age, 14.8 years), who attended special education classes and who were diagnosed as having attention deficit and hyperactivity disorder/learning disabilities (ADHD/LD), were interviewed. The comorbidity of the ADHD group included emotional lability and/or depression, 70%; oppositional defiant disorder (ODD), 67%; obsessive-compulsive disorder (OCD), 44%; addiction to buying, 44%; and aggressiveness, 62%. Twenty-one percent were either involved in the past or presently using drugs. Nine percent had attempted suicide. According to their parents, the main characteristic of these adolescents was low self-image. Parents enumerated five negative characteristics: impulsiveness; nervousness; angered easily (‘short fused’); aggressiveness with cursing and outbursts; and impaired sociability with impoliteness. © 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Attention deficit and hyperactivity disorder/learning disabilities (ADHD/LD); Parental perceptions 1. Introduction Attention deficit and hyperactivity disorder (ADHD) is a neuro-behavioral disorder [1]. It is accompanied by impaired inhibition in children [2,3], and its symptoms include sustained attention disorder and hyperactivity/impulsivity [4,5]. It has a genetic origin [6], with functional damage involving the frontal–cortical–basal ganglia connection [5], and some of its comorbidities include mood lability, anxiety, disruptive behavior, interpersonal relationship difficulties, and academic failure [7]. It is common to diagnose learning disabilities (LD) among this population of ADHD adolescents [8]. Michael and Lewandowski pointed out that these adolescents are at a higher risk for developing psychological adjustment problems and emotional distress [9]. Females were at twice the risk of attempting suicide and being involved in violence as compared with their male peers [10]. The difficulties become familial as a result of other family members living with constant stress [11]. A follow-up of these adolescents shows that most of them were working in unskilled jobs [12]. ∗ Corresponding author. Tel.: +972 3 502 8422; fax: +972 3 502 8422. E-mail address: brookuzi@post.tac.ac.il (U. Brook). ADHD is defined as a psychiatric-behavioral condition which includes anxiety [13,14], depression [15–17], and aggressiveness [18]. These adolescents are also at risk for developing a conduct disorder (CD) with addiction to smoking, consumption of alcohol and drugs, and problems of delinquency. The ADHD/LD adolescents suffer from social disabilities and have to face social problems [19] originating from difficulties with peer relationships [20]. Frequently, they find themselves socially isolated [21]. The self-esteem of these adolescents is impaired [22]. Mannuzza and Klein state that their low self-esteem stays with them even after adolescence [23]. Accumulation of suffering and frustration bring them to the brink of suicide. Levinson et al. [24] found that psychosocial characteristics of these adolescents who carried out suicide attempts include: school difficulties [10,15,16]; recurrent depressions; and existence of psychiatric disturbances. ADHD is also a familial problem. It is influenced by the severity of parental impulsiveness, as well as, their hostility [25–27]. The quality of life (QOL) in these families is low [28], while financial costs are high [29]. Murphy and Barkley state that there was more psychological impairment, as well, among their parents [30]. Neiderfer et al. state that 0738-3991/$ – see front matter © 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.03.018 U. Brook, M. Boaz / Patient Education and Counseling 57 (2005) 96–100 97 familial cohesion has a beneficial influence on the mode of coping: a broken family exacerbates the difficulties of these adolescents [31]. Biederman et al. pointed out that over a period of years, there was a decrease of hyperactivity, impulsivity and inattention symptoms [32]. Hill and Schoener pointed out that there was a decrease of 50% in the severity of ADHD every 5 years [33]. Mannuzza and Klein state that their low self-esteem stays with them even after adolescence [23]. Their antisocial behavior can also be combined with drug abuse. Tsai and Gar state that a delay in the diagnosis of ADHD can be the cause of the development of serious social problems [34]. Hechtman mentions that the IQ and temperament of the child/adolescent will influence the prognosis [26]. Paternite et al. state that childhood aggressiveness is a predominant factor, as well, in their prognosis [35]. Bagwell et al. found that the relationship with peers is an important factor, as well, in the prognosis of ADHD [36]. Greene et al. mention social disabilities as negative markers in the outcome [37]. Toupin et al. [38] and Fisher et al. [39] mention that having a childhood with CD is a negative predictor in their future. Kruger and Kendell suggest there is room to help these adolescents by developing in them an early sense of responsibility [40]. The aims of the present study are: 1. To learn about parental perception concerning the ADHD/LD of their children. 2. To verify the comorbidity of ADHD/LD. 3. To examine the parental hopes and fears concerning the future of the ADHD/LD adolescents. 4. To learn about positive and negative characteristics that parents observed in their ADHD/LD children. 2. Methods Sixty-six parents of adolescents, diagnosed as having ADHD/LD, were interviewed. The adolescents were attending special education classes (grades, 7–12). The background of participants is summarized in Table 1. A questionnaire was prepared by the authors and had passed Table 1 Background characteristics of participants (n = 66) Father Mother Age of the parents (years) 46.2 7.6 42.2 7.4 Parental professions (%) Academic 18.2 15.2 Teaching 1.5 16.7 Technical 51.5 22.7 Commercial 28.8 9.1 Housekeeper – 36.4 Adolescents Age (years) 14.8 1.9 Boy to girl ratio (%) 62.1:37.9 judgement validity by pediatricians (3), neurologists (2), psychiatrists (2), social workers (2), and an educational advisor [2]. Out of 115 items in the first version, 88 were left in the final questionnaire. All parents who were invited to the interview agreed to come specially to the school. The school is under the framework of ‘special education’ in the city of Bat Yam with 250 pupils attending; most of them diagnosed as having ADHD and/or LD. Their deficiencies at school and results of neuro-education examinations (at school and elsewhere) were noted and confirmed by didactic tests conducted by outside specialists. The statistical analysis was done by the Epidemiology Unit, utilizing averages; the non-parametrical Kolmogorov–Sminov test; and linear correlations. 3. Results Parental reports concerning adolescents’ ADHD symptoms are summarized in Table 2. Data of pupils concerning LD are summarized in Table 3. Table 4 summarizes the comorbidity. Only 39.4% of the parents received explanation/information from professionals; 71.2% of the parents were criticized by their families for not knowing how to discipline their ADHD/LD child and 65.2% of the parents reported experiencing economic difficulties as a result of their child’s condition. Parents were asked to relate three positive and three negative characteristics in their children/adolescents. These are summarized in Table 5. Characteristics found in the ADHD/LD adolescent’s reaction to various situations are summarized in Table 6. Table 2 Data about the ADHD of adolescent pupils Types of conditions ADHD (%) 83.3 Impulsivity (%) 81.1 Outbursts (monthly, no.) 5.2 First age of presenting symptoms (years) 5.2 3.0 Age of diagnosis (years) 8.14 3.2 Adolescents treated with Ritalin (%) 30.3 Length of treatment (months, mean) 10 Table 3 Characteristis of pupils having LD Characteristics % Types of difficulties Reading (dyslexia) 78.8 Writing (dysgraphia) 80.3 Mathematics (dyscalculia) 68.2 Problems with foreign language 62.1 Problems with fine motor skills 53 Existence of LD in family 54.5 Read a book within the last year 12.1 Read weekly magazines 37.9 98 U. Brook, M. Boaz / Patient Education and Counseling 57 (2005) 96–100 Table 4 Comorbidities of ADHD/LD adolescents as reported by parents Cormobidity % Fears and anxieties 59.1 Mood changes 75.8 Depression 69.7 Obsessive-compulsive disorder (OCD) 43.9 Oppositional defiant disorder (ODD) 66.7 Aggressive speaking 71.2 Threatening and aggressive behavior 62.1 Smoke cigarettes regularly 53 Consume alcoholic beverages regularly 31.8 Tried in the past or consume drugs at present 21.2 Had thought of suicide 37.9 Attempted suicide 9.1 Table 5 Positive and negative characteristics of ADHD/LD (view of adolescents) Characteristics % Positive Likes to help 17.7 Compassionate 13.1 Friendly, sociable, and giving credit to others 13.1 Love for animals 5.4 Creative 2.3 Negative Nervous, angry, short-tempered, and yells 18.7 Aggressive, curses, and outbursts 18.6 Impolite and does not consider other’s needs 6.5 Wastes money (without calculation) 4.7 Stubborn and does not know how to give-up 4.7 An introvert (without friends) 2.8 Excessive sleeping (hypersomnia) 2.8 Table 6 Characteristics of ADHD/LD (according to parents) Recognizes his/her handicaps and limitations (%) 45.5 Self-image (out of 10) 3.8 1.8 Sociability and friendliness 5.9 2.3 Intensity of dispute with parents (out of 10) 7.1 1.8 4. Discussion and conclusions Impulsivity was mentioned by 82% of parents as the most difficult aspect of ADHD/LD to live with. Murphy et al. points out that impulsivity can be a predictor for future antisocial behavior [2]. Vitacco and Rogers, as well, consider impulsivity as a marker for development of psychopathology with conduct disorders [41]. Ritalin (methylphenidate (MPH)) is the principal medication for ADHD patients, in use since 1930 [42]. Side effects include headaches, stomachaches, insomnia, and decreased appetite [43]. It is surprising that only 30% of parents mentioned that their children had ever received this medication. Paternite et al. confirmed the opposite, in that, higher doses of MPH (Ritalin) were associated with fewer diagnosed cases of alcoholism or suicide attempts [35]. Concerning LD, the majority of parents still complain about the school teachers’ lack of comprehension and encouragement to their adolescents. Parents hope that, in the future, all these teachers would undergo a continuing yearly orientation concerning the handicaps and the problems of these LD children [44]. Seventy-one percent of parents reported that they are criticized frequently by other family members, teachers at school, or educational advisers that they donot know how to educate their child/adolescent or how to extract filial obedience. Teachers should have non-judgmental attitudes—neither blaming the parents nor seeing them as responsible for the behavior of their child. Rey et al. pointed out that a lower economic familial environment predicts a worse future outcome [45]. In the present study, 65% of parents reported having economic difficulties. In spite of all these difficulties, Podolski and Nigg recommend that these parents adopt a positive way of thinking and face all these ADHD/LD connected problems with the conviction that it is possible to overcome them [46]. Aggressiveness is one of the most difficult behaviors of the children/adolescents. The child/adolescent reacts with aggressive speech and expressions of anger towards any of the people in his/her vicinity. The outburst can end in an actual physical violence. Seventy-one percent of parents reported aggressive talking by their child, when he/she is under stress. Sixty-two percent of parents complained about being repeatedly threatened and about aggressiveness towards them. Diamond and Siqueland pointed out the many violent encounters within these families of ADHD/LD children [47]. Correspondingly, ADHD/LD adolescents can find themselves at odds with the law and subject to investigation by the police for criminal prosecution. Parents gave a low score (3.8 1.7, out of 10) for their child’s/adolescent’s self-image. Kruger and Kendell emphasized the low self-esteem of these adolescents [40]. Hoza et al. noted the low self-esteem which the parents of ADHD/LD children have of themselves [48]. Adolescents, with severe ADHD/LD, have difficulty resisting social pressures and are drawn to addictive activities. Drug addiction is the most risky and dangerous habit as these adolescents can develop conduct disorders and become delinquent. In regards to suicide, 40% of these adolescents reported about being occupied with suicidal thoughts; 10% actually tried physically to attempt suicide. However, the accumulation of frustration and suffering is enormous; and when pain exceeds the resources for coping, then suicide attempts occur. The pressures at home, school, and with friends cause these adolescents to be in permanent conflict with people around them. They are tense and angry (frequently at home) and argue constantly with parents and/or siblings. Parents gave a score of 7.1 (out of 10) for intensity of quarrels. They also have permanent emotional scars from years of studying under so much strife. U. Brook, M. Boaz / Patient Education and Counseling 57 (2005) 96–100 99 According to their parents, positive characteristics of these adolescents include: willingness to help others and great empathy with domestic animals, and negative characteristics include: their anger; nervousness; and short temper, which is the main complaint, as it was difficult to face the outbursts, the aggressiveness and cursing of these adolescents. A third complaint reported was non-consideration of the needs of others. 4.1. Conclusions ADHD/LD should be considered as a disability of the child/adolescent as well as a problem of the entire family. The most prominent comorbidities accompanying ADHD are impulsivity and outbursts, obsessive-compulsive disorders (OCD), addictions and depression, even up to and including suicide. The most efficacious mode of coping is to increase their self-esteem, and as a result, their negative characteristics and lack of consideration for others will hopefully be decreased. 4.2. Practice implications • ADHD/LD of the child/adolescent is, in many cases, a familial neuro-behavioral disability that can last for their whole lifetime. • As ADHD/LD is influenced by genetic and neuro-chemical factors, there is no reason to blame the child/adolescents or his/her parents for this disability, but to counsel all concerned about how to cope with it. • As the list of comorbidities is long, and behavioral problems distrub the normal functioning of the ADHD/LD child/adolescent (in school, home, or elsewhere), parents should seek professional help for them. • As ADHD/LD is a familial matter, parents should participate themselves and accompany the child/adolescent in supportive group therapy organized by professionals until his/her behavior stabilizes. • As there is a possibility for positive improvement in the child/adolescent with ADHD/LD, all concerned should be encouraged and never lose hope. 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