Clinical pathway for children and adolescents in Oslo with ADHD. Manual for parents. Oslo kommune

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1 Clinical pathway for children and adolescents in Oslo with ADHD Manual for parents Oslo kommune

2 Clinical pathway for Children and Adolescents in Oslo with ADHD The Oslo University Hospital, Akershus University Hospital, The Diakonhjemmet Hospital, Lovisenberg Diakonale Hospital, and the Municipality of Oslo have jointly developed a clinical pathway for children and adolescents with ADHD. This manual describes the role individual participants have in the treatment and follow-up of children and adolescents with ADHD. There are manuals for guardians, health clinics and school health services, kindergartens, schools, the educational and psychological counselling service (PPT), GPs, mental health services for children and adolescents (BUP) and the child welfare services respectively. These manuals are available electronically as well as in a paper version. All manuals are constructed in the same way and are based on the model of Østfold Hospital s clinical pathway for children and adolescents with ADHD. The framed text is the same for all the manuals. General information on restlessness and inattention There are many causes of restlessness and inattention in children and adolescents. Internal and external conditions may contribute to or be more likely causes of the current symptoms. Factors such as physical illness, reactions to severe stress, either current or in the past, major worries, children and young people under poor parental care, parental ill-health and other conditions may also play a part. 2

3 Manual for parents About ADHD: ADHD / Hyperkinetic disorder is a term for one of the most frequently occurring disorders in mental health care for children and young people. ADHD, the diagnostic term provided in DSM (the diagnostic manual of the American Psychiatric Association) stands for Attention- Deficit/Hyperactivity Disorder, while the World Health Organization uses the term hyperkinetic disorder in its diagnostic manual, the ICD. ADHD is the most prevalent term and will be used in these manuals. ADHD is characterized by remarkably high levels of activity, impulsive (thoughtless) actions and difficulties in concentrating and sustaining attention, in relation to what is consistent with the age and situation of the child. A subgroup of ADHD has hyperactivity and impulsivity to a lesser degree, but has significant problems with concentration and attention. Prevalence among school-age children is considered to be between 3-5%. The symptoms should have appeared before starting school, and persisted for at least six months. They should be present in multiple settings such as home, kindergarten and school, but not necessarily in new environments, one-on-one situations or in activities of the child s choice. In order for a diagnosis to be made, the problems should be of such a nature that they have led to a functional impairment in the child. The diagnosis is usually made in specialist health services (BUP). Very often there are additional problems such as behavioural problems, emotional problems, learning disabilities, motor clumsiness etc. It is not uncommon for parents to struggle in their interactions with the child. The presence of other developmental disorders, mental, behavioural or family problems does not rule out ADHD. It is well documented that ADHD carries with it the risk of uneven development. Most children and young people need various interventions over time, including information, parental guidance, support in the kindergarten and school and possibly medication. Individual, family or group therapy may be appropriate in relation to additional difficulties. See also Veileder i diagnostikk og behandling av AD/HD Sosial og helsedirektoratet

4 About detection It is important to detect children and young people with various difficulties early so that all necessary interventions can be initiated. This must be combined with an openminded concept of normality. When it comes to identifying children and adolescents with problems, including ADHD, the main participants are parents and guardians, kindergartens / schools, clinics and school health services. The parents role in detection If a child or adolescent shows a significant degree of impulsivity, restlessness and inattention, and guardians are concerned about this, one can proceed as follows: Parents or guardians of pre-school children can contact a mother and child health centre and discuss the possibility of consulting their family doctor or general practitioner (GP). Information and assessments made at the health centre should be forwarded to the family doctor or GP. Parents or guardians can choose to consult their family doctor or GP first, who will make an assessment before any further investigation is done. Parents or guardians should bring copies of the papers from the health centre with them. If the GP suspects that it could be ADHD, a general examination shall be made as well as an assessment of whether purely medical conditions might be the underlying cause of the difficulties or might have reinforced them. The GP must then consider whether to send a referral to a mental health clinic for children and adolescents (BUP). If the child attends kindergarten, parents can also discuss their concerns there. If their concerns are confirmed or supported by the kindergarten, a referral can be made to the district administration/ educational specialist centre for further assessment of special educational measures. A referral to the educational and psychological counselling service (PPT), must include a pedagogical report from the kindergarten. Parents will be informed when the referral has been received and will be contacted by the PPT, which will then gather information from parents and relevant agencies. PPT shall prepare an expert assessment (statement) that concludes with what help the child needs at kindergarten, either by using general educational measures or special educational assistance, regardless of whether there is a formal diagnosis or not. If the child / youth is of school age, parents or guardians can also discuss their concerns with the school. If their concerns are confirmed or supported by the school, the matter shall be discussed 4

5 in the school s resource team for further assessment of interventions and a possible referral. If the student is referred to the PPT, a pedagogical report from the school must be enclosed. Parents or guardians will be informed when the referral has been received and will be contacted by PPT which will then gather information from parents and relevant agencies. PPT shall prepare an expert assessment (statement) that concludes with what help the child may need at school, either by using general educational measures or special educational assistance, regardless of whether there is a formal diagnosis or not. If the school or kindergarten is worried about the child s/student s concentration and attention, the matter will be discussed with the parents or guardians. Parents or guardians do not always share the same concern. It is important that kindergartens, schools and parents collaborate closely on interventions at an early stage. Children / pupils can be helped, and early intervention is the best help. Parents or guardians shall always give their consent as to possible interventions. 5

6 About referral About assessment and diagnosis The doctor (mainly the family doctor or GP) refers the patient to the mental health services for children and adolescents (BUP). (See the Referral form) The doctor should obtain written information, observations and assessments from parents, health clinics and school health services, the kindergarten / school, child welfare service and others. The child welfare service has the right to refer directly to BUP, but it sends a copy of the referral to the doctor with the parent s or guardian s written consent. The role of parents or guardians in referrals If parents or guardians, possibly in collaboration with others, want to refer their child for an assessment because of difficulties with concentration and attention, hyperactivity, impulsivity and / or behavioural problems there are several ways of doing this: Pre-school children: First and foremost contact your family doctor or GP. A doctor at the health centre can also be consulted. If the child attends kindergarten, the kindergarten shall write a pedagogical report that can be given to the doctor. An ADHD diagnosis is usually made by specialized health services, usually BUP. Assessments submitted by the kindergarten, school, the educational and psychological counselling service (PPT), health clinics and school health services, the GP and child welfare service are of great importance for BUP in this work. There is no blood test or single test that determines the diagnosis. During diagnosis the case history, symptoms in different situations and the degree of impairment are considered. Different interview forms, standardized checklists, and tests and observations across multiple settings are available to assist in this process. Children and adolescents with normal physical restlessness, intermittent poor concentration or only behavioural problems, do not qualify for an ADHD diagnosis. The most difficult part of diagnostic work is to assess whether the symptoms can best be understood as an expression of something other than ADHD, and to identify additional problems. A review will not just result in a formal diagnosis (ADHD), but also include suggestions for intervnetions. See Veileder i diagnostikk og behandling av AD/HD Sosial og helsedirektoratet

7 School children: Contact your family doctor or GP. The school must write a pedagogical report that can be taken to the doctor. The role of guardians in assessment and diagnosis Parents as informants. When determining whether a child / adolescent has ADHD or the kind of assistance he /she needs, information from the parents or guardians is essential. The following information will be requested; pregnancy, birth and early development, illness / injury, special events and experiences in the child s upbringing, current and past behaviour, whether there are others in the family with similar difficulties, the parents or guardians own understanding of the child s difficulties Because additional problems are common in ADHD, and because the symptoms of ADHD may resemble symptoms of other conditions, some questions will be asked that do not directly concern ADHD. Parents or guardians may be asked to fill out a form at home where questions are asked about the other conditions. The completed form will be followed up with a detailed interview. Parents or guardians may also be asked to fill out various questionnaires used in the assessment of the difficulties the child / youth has at present and asked to describe how severe they are. As far as scores are concerned, it is important that you fill out the form at your own discretion, even where you are uncertain. Questions will also be asked about the child/ youth s strengths and interests. This is important information while planning interventions. The information you provide will be treated confidentially. 7

8 About follow-up and measures For most children and adolescents with ADHD, the following principles and actions are important: Information is of great importance both for the child / adolescent, parents or guardians, kindergarten / school and others. It is important to have information and knowledge about ADHD in general and about the significance this has for the individual. Information must also be given about additional problems, challenges and interventions. It is just as important to get information about the individual child s / youth s resources Interventions must be individually adapted and include parental guidance, child / adolescent counselling, support in kindergarten / school and any medicinal treatment. Interventions must have a long-term perspective. There may be a need for different forms of support at different ages and life situations. Transitional phases are often especially vulnerable times, such as the transition from kindergarten to primary school, primary to secondary school, from primary to secondary education and at the age of majority. For parents and the child / adolescent, it is important to know whom to turn to in the support system. A coordinated partnership between the family and the various professionals in the support system is important. For children and young people with comprehensive needs over time, interdisciplinary team group meetings and an individual plan (IP) are useful elements to help cooperation. Districts are organised differently, but the professional who has the responsibility for coordination and follow-up should be clarified in each district. The role of guardians in monitoring and measures Children with ADHD have a need for various kinds of interventions. These include adapting the environment in the home/ nursery/school and possibly medication. Information to the child itself and parents/family is important. Often several institutions such as kindergartens, schools, the PPT, mother and child health centres, GPs and BUP will collaborate. If the need for coordinated services is great over time, parents or guardians can contact the co-ordinating unit in the district to create a responsibility group(interdisciplinary team) and develop an individual plan. In the responsibility group meetings, where parents also participate, tasks are distributed and plans made. An individual plan (IP) is a comprehensive plan for coordination and cooperation between services regarding the child, while an Individual Education 8

9 9

10 Plan (IEP) is an alternative curriculum used in schools for pupils who are entitled to special education. Contact with the kindergarten/school. Parents or guardians who have children/ adolescents with special disabilities often have a greater need than others for frequent contact with the kindergarten/ school. A good relationship is of benefit to the child. The following issues are often central to the cooperation between the home - kindergarten - school: Should other children/students and their parents be informed about the ADHD diagnosis and any medication? Does homework create such a lot of problems that it should be cut, reduced or done at school? The kindergarten/school and home must agree on how information should be communicated between the home and the kindergarten / school. Monitoring of medication. Whilst medicine is being tried out and doses being adjusted, it is important that the home and treatment services stay in close contact. A specialist, usually from BUP, shall start medicinal treatment but it can be transferred to the GP who will then carry out routine check-ups. During the check-up, parents or guardians will be asked the following: Does the medicine (continue to) alleviate/help restlessness, concentration and impulsivity? Try to consider this in isolation from other problems that the child may have. Have parents or guardians control over whether the medication is taken? What does the kindergarten/school say about the effect? What does the child/adolescent him-/herself report? If the child/adolescent experiences a loss of appetite, difficulties in falling asleep, sadness, pain in the stomach, palpitations or headache, it is important to inform your doctor. Other follow-up: Parents or guardians can receive help/assistance from several agencies. Parental guidance from BUP, family offices, family centres, and possibly others. Parents or guardians can contact their local authorities for more information about the various support measures/schemes that the district can offer Parents or guardians can contact NAV to get more information about the various support measures/ schemes in accordance with social security legislation Varied assistance through the ADHD Association 10

11 General information and brochures about AD/HD can be obtained from: National Centre for AD/HD, Tourette Syndrome and Narcolepsy: Website: tel.: , ADHD Norway: Website: tel.: , Regional experts on autism, ADHD, Tourette syndrome and narcolepsy Helse Sør-Øst Website: 11

12 Grafisk design: Pagina AS

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