Intellectually disabled adolescents Prepared in time



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Abstract



Background: There is a lack of research into the use and misuse of psychoactive substances such as alcohol and drugs among persons with an intellectual disability, especially among the adolescents in this population. To our knowledge there are no special prevention intervention programmes for special needs school students explaning them about the dangers of using tobacco and alcohol and helping them in not starting the use of any of these products. However there is an e-learning program ‘Prepared in time’ which has the main goal of prevention adolescents from using tobacco and alcohol. This program was developed for 5th and 6th graders in mainstream primary schools and has so far not been used in different settings. ‘Prepared in time’ aims to increased the knowledge on smoking and tobacco and also tries to change attitudes, lower intention to start using and increase the self-efficacy of the students working with the programme.
Aim: This study into substance use prevention among adolescents with an intellectual disability was twofold. First it gives an impression of the use of tobacco and alcohol amond 1st and 2nd graders in secundary special needs schools. Secondly it looks at the usefullness and the effectiveness of the e-learning program ‘Prepared in time’ for this population.
Methods: A quasi-experiment was used in which 232 students filled out a baseline and follow-up questionnaire. The respondents were students of one of the five participating schools. The schools were selected to be part of either the experimental group or control group based on number of students, gender of student and number of students in 1st and 2nd grade. The students in the experimentalgroup also worked with ‘Prepared in time’ and filled out a process evaluation on the e-learning programme.
Results: This study showed that a large proportion of respondents, age 11-15, initiated smoking (49%) and drinking (75%). The drinking percentage is consistent with national results however the students in this study smoke significantly more then was expected based on national studies. The students were well capable of working with the e-learning program ‘Prepared in time’. They gave it a rating of 6 out of 10, finding it easy and, especially the games, fun. The e-learning programme significantly increased their knowledge on alcohol. It did however not affect their smoking or drinking behaviour or the behavioural determinants attitude, intention, subjective norm, peer pressure, social support and self-efficacy.
Conclusion: This study has showed some first results on the smoking and drinking behaviour of adolescents with a mild and borderline intellectual disability. The participating students were well capable of working with an e-learning programme and more research should be done into this way of teaching. To get effective results from ’Prepared in time’ it will need some improvements to provide in the special needs these students have, such as repetition and simple explenations. If this were to be done, ‘Prepared in time’ could be a good supplement to a larger scale prevention program. These results show the importance of developing a proper prevention-intervention programme for this special population.

Samenvatting



Aanleiding: Er is een gebrek aan onderzoek op het gebied van gebruik en misbruik van psychoactieve stoffen als alcohol en drugs onder mensen met een verstandelijke handicap en dan met name onder de adolescenten binnen deze populatie. Voor zover bij ons bekend zijn er geen speciale preventie programmas voor gebruik binnen het speciaal onderwijs die verstandelijk gehandicapte studenten informeren over de gevaren van roken en alcohol en hen leert dat het beter is deze producten niet te gebruiken. Echter, er bestaan een e-learning programma ‘Op tijd voorbereid’ dat als doel heeft te voorkomen dat adolescenten beginnen met het gebruiken van alcohol en sigaretten. Dit programma is ontwikkeld voor gebruik in groep 7 & 8 van het reguliere basisonderwijs en is tot noch toe niet gebruikt in andere settings. ‘Op tijd voorbereid’ heeft als doel om de kennis over alcohol en roken te vergroten en probeert daarnaast de attitudes van de leerlingen te veranderen, de intentie om te gaan gebruiken te verlagen en hun zelfeffectiviteit te verhogen.
Doel: Dit onderzoek was tweevoudig opgezet. Aan de ene kant geeft het informatie over het gebruik van alcohol en sigaretten onder jongeren in klas 1 en 2 binnen het praktijkonderwijs. Daarnaast is er gekeken naar de bruikbaarheid en effectiviteit van het e-learningprogramma ‘Op tijd voorbereid’ binnen deze doelgroep.
Onderzoeksopzet: Er is gebruik gemaakt van een quasi-experiment waarin 232 studenten 2 vragenlijsten hebben ingevuld; een voormeting en een nameting. 5 scholen hebben meegewerkt aan dit onderzoek en zijn op basis van aantal studenten, geslacht van studenten en aantal studenten in het 1e en 2e jaar geselecteerd voor de experiment- of controlegroep. De studenten in de experimentgroep hebben naast de vragenlijsten gewerkt met het programma ‘Op tijd voorbereid’ en hebben over dit programma een evaluatievragenlijst ingevuld.
Resultaten: Uit dit onderzoek blijkt dat een grote groep van de studenten (leeftijd 11-15 jaar) al eens heeft gerookt (49%) en alcohol heeft gedronken (75%). Het percentage drinkers komt overeen met het landelijk gemiddelde, het aantal rokers was echter significant hoger in vergelijking met landelijke cijfers. De studenten waren goed in staat om met het e-learning programma te werken en gaven het een score van 6 uit 10. Ze vonden het makkelijk om mee te werken en vooral de spelletjes werden erg gewaardeerd. ‘Op tijd voorbereid’ vergrote de kennis over alcohol significant. Echter het programma had geen invloed op het rook- en drinkgedrag van de jongeren. Ook was er geen invloed zichtbaar op de gedragsdeterminanten attitude, intentie, subjectieve norm, groepsdruk, sociale steun en zelfeffectiviteit.
Conclusie: Dit onderzoek levert eerste resultaten over het rook- en drinkgedrag van zwakbegaafde of licht verstandelijk gehandicapte jongeren. De studenten die meewerkten aan dit onderzoek waren prima in staat om te werken met een e-learning programma en het is aan te raden meer onderzoek te doen naar de mogelijkheden van e-learning binnen het speciaal onderwijs. Om effectieve resultaten te behalen met ‘Op tijd voorbereid’ zullen er een aantal aanpassingen gedaan moeten worden om het programma geschikt te maken voor deze studenten, zoals meer herhaling en eenvoudigere uitleg. Als dit gedaan owrdt dan zou ‘Op tijd voorbereid’ een goed onderdeel kunnen vormen van een op groter schaal opgezet preventie programma. De resultaten van dit onderzoek laten zien hoe belangrijk is dat er een goed preventieprogramma komt dat speciaal ontwikkeld wordt voor deze doelgroep.

Index


Abstract 3

Samenvatting 5

Index 7

Chapter 1 - Introduction 8



Chapter 2 - Problem Statement 10

2.1 Substance use and misuse among persons with an intellectual disability 10

2.2 Intervention and prevention programmes for people with an intellectual disability and substance use problems 12

2.3 E-learning 14

2.4 Prepared in time 16

Chapter 3 - Methods 19

3.1 Design 19

3.2 Study Group 19

3.3 Procedures 20

3.3.1 Usability & appreciation 20

3.3.2. effectiveness 20

3.5 Measurements 21

3.5.1. Pretesting 23

3.5.2. Baseline questionnaire 23

3.5.3. Proces evaluation questionnaire 26

3.5.4. Follow-up questionnaire 28

3.6 Statistical analysis 29

Chapter 4 - Results baseline questionnaire: Prevalence of substance use and behavioural determinants 30

4.1 study group 30

4.1.1. Respons 30

4.1.2. Demographic variables 31

4.2 Smoking Behaviour at baseline 32

4.3 Alcohol drinking behaviour at baseline 33

4.4 Determinants of behaviour at baseline 38

4.4.1. Knowledge 38

4.4.2. Intention 39

4.4.3. Attitude 39

4.4.4 Social influences 39

4.4.5 Self efficacy 40

4.5 Multi-analysis on smoking behaviour & drinking behaviour at baseline 42

Chapter 5 - Results proces evaluation 44

5.1 Respons 44

5.2 Appreciation 44

5.3 Improvement 47

5.4 Observations 47

Chapter 6 - Results follow-up questionnaire: Prevalence of substance use and behavioural determinants 49

6.1 Indirect behavioural aspects 49

6.2 Effects on knowledge & variables ASE-model 49

6.3 Effects on behaviour 52

Chapter 7 - Discussion & Recommendations 56

7.1 Prevalence of cigarette smoking and alcohol drinking among adolescents with an intellectual disability 56

7.2 Prepared in time 57

7.3 Topics for future research 59

Acknowledgements 61

References 62

Appendix 66

Appendix 1 – List of Tables 67

Appendix 2 – Baseline Questionnaire 69

Appendix 3 – Proces-Evaluation Questionnaire 70

Appendix 4 - Follow-up Questionniare Experiment Group 71

Appendix 5 - Follow-up Questionnaire Control Group 72

Chapter 1 - Introduction


Substance use and misuse among persons with an intellectual disability (ID) has been the focus of much attention as it seems to have been increasing over the last 20 years (Krishef, 1986, Burgard, Donohue, Azrin & Teichner, 2000). However, treatment programs have not seen the same progress and are not suitable to provide the care this special population needs. (Kelman, Lindsay, McPherson & Mathewson, 1997) The same can be said for prevention intervention programmes. It seems there are no programmes available that are specifically developed for and useable with ID students in special needs schools.

AveleijnSDT is a dutch health care organization, providing care to mentally disabled persons. They are located in the east of the Netherlands. The organization provides care for people with an intellectual disability from childhood up to old age. With over 2400 clients and 1600 employees it is a large organization that provides housing, day care, sheltered working, therapy etc. Some clients are institutionalized, others live on their own and are regularly visited by their care providers. In line with findings in literature they have seen in increase in use and misuse of substances among their clients. They want to provide the best quality care possible and have started a special project (Binnenplein), that focuses on the substance use and misuse problems. One of the goals of this project is to develop a prevention-intervention programme to use among the younger clients.

Tactus addiction medicine is also located in the east of the Netherlands and faces similar problems as AveleijnSDT. They have seen a grow in clients that suffer from an intellectual disability and have difficulty providing care at their level. Besides treatment they also focus on providing prevention programmes among primary & secondary schools. One of these programmes is ‘Prepared in time’ a prevention intervention program that focuses on smoking & alcohol. It was developed for use in the 5th & 6th grade of regular primary schools. The program has 3 components; an e-learning program, group assignments & an information evening for parents. The main goal of this program is to prevent adolescents from starting smoking cigarettes & drinking alcohol. Its aim is to extend their knowledge and change their social attitudes towards tobacco and alcohol, thereby trying to establish behavioural changes.

As their are no official numbers available in the Netherlands on use of alcohol and tobacco among adolescents with an intellectual disability this study looked into their lifetime prevalence, monthly prevalence and daily use in order to get a first indication into the scale of substance use and misuse among this population. Besides being overlooked in national surveys on prevelances, these children and adolescents seem to be a forgotten target group when it comes to prevention interventions programs on alcohol, tobacco & drugs (Kelman et.al. 1997). The same can be said about the use of new methods like e-learning. By researching the program ‘Prepared in time’ an attempt was made to look at both the usefulness and effectiveness of e-learning for adolescents with an intellectual disability. 5 special needs schools were willing to participate, providing 232 students. The participants were divided into two groups: an experimental group and a control group. All of them filled out a baseline questionnaire and a follow-up questionnaire. The experimental group also worked with ‘Prepared in time’ and filled out a proces-evaluation on the program.


Chapter 2 - Problem Statement



2.1 Substance use and misuse among persons with an intellectual disability

Substance use and misuse among people with an intellectual disability seems to be a growing problem. Research shows that misuse and abuse of substances among people with an intellectual disability has grown over the last 20 years (Krishef, 1986; Burgard et.al., 2000). As there is an increasing emphasis on deinstitutionalization and normalization, persons with an ID are maintained within the community and ID adolescents socialize in similar environments as their non-ID peers (Cocco & Harper, 2002). This results in greater access to sport facilities, schools & shops but also to tobacco, alcohol and drugs such as cannabis, cocaine and XTC, subjecting them to greater opportunities of possibly misusing these products and increasing the likelyhood of potential harm and alcohol & drugs problems (Krishef & DiNitto, 1981; Krishef, 1986; McGillicuddy & Blane, 1999; Taylor, Standen, Cutajar, Fox & Wilson, 2004).


However, studies on substance use disorders among these people, and especially ID adolescents are rare (Beitchman, Wilson, Douglas, Young & Adlaf, 2001). From the few studies done so far it appears that people with an ID experience the same kind of drugs-related problems that occur in the general population (Christian & Poling, 1997). Beitchman et.al. (2001) found that there is no difference in the use of substances, the level of consumption or the onset history between participants with an intellectual disability and participants without an intellectual disability. This corresponds with a study by Krishef (1986) that indicates that persons with mild ID did not differ significantly from the general public as far as the number of problems associated with consumption of alcoholic beverages. However research done by McGillicuddy and Blane (1999) showed a 1:1 ratio of misusers to users for those who did drink alcohol. This result supports the idea that people with an ID get addicted to substances quicker than persons in the general population (Christian et.al.,1997; Burgard et.al. 2000).
Looking at ID adolescents studies show that they are a high risk group for developing substance abuse problems in the future (Kress & Elias, 1993; Beitchman et.al. 2001). Because of their intellectual disability they face unique risk factors as they suffer from a lack of skills, are extremely sensitive to peer pressure and are ill-equipped to face high stress situations (Kress et.al., 1993; Christian et.al.,1997; Burgard et.al. 2000). Besides these problems some researchers believe that part of the problem lies in the intellectual disability itself. Problems like inadequate self-regulatory behaviour have been identified as a frequent predictor in drug abuse among the general population but is also a known problem associated with ID (Christian et.al., 1997).
The cognitive limitations that increase the risk of substance misuse makes research with this population difficult (McGillicuddy et.al. 1999). It is hard to get informed consent as a result of high illiteracy among intellectually disabled persons. Also, reseachers perceive that obstacles as illiteracy, short attention spans, poor short and long term memory, proclivity to distort abstract cognitive concepts and an overly compliant disposition may result in the provision of inaccurate information (McGillicuddy, et.al. 1999). Another problem in this field of research is the diversity of the population, definition problems on intellectual disability and on when they use or misuse substances as well as overprotection by the environment and legal and ethical issues. As a consequence, little controlled research dealing with etiology, prevention or treatment of alcohol or drugs among individuals with an intellectual disability has been done (McGillicuddy et.al. 1999). “Controlled research dealing with the genesis, treatment and prevention of drug abuse among people with ID is essentially non-existent, but badly needed” according to Christian & Poling (1997, p. 126).
In the Netherlands, no official data are available on the percentage of intellectually disabled people that suffer from substance use and misuse problems. A first inventory on this subject by Mutsaers, Blekman and Schipper (2007) gave no numbers but showed that there is a growing interest among social services and addiction care facilities into the subject. A study on alcohol use and drug use among adolescents with an intellectual disability was done by the Trimbos Institute (Bransen, Schipper, Mutsaers, Haverman & Blekman, 2008). It showed a lifetime prevalence of alcohol drinking at 76% and a lifetime prevalence of drug use at 34%. However this study was done by means of an online questionnaire which means that only indiviuals with a computerskills and internet access were able to participate. Also the agegroup was quite large with a range from 12-25 and an average of 16 years old. As the legal age of drinking alcohol in the Netherlands lies at 16, high use percentages can be expected. As this study only looked at alcohol and drugs they can not provide any numbers on smoking (Bransen,et.al. 2008). In September 2009 an epidemiology research on larger scale was set up by J. VanderNagel as part of SumID: Substance Use and Misuse in Intellectual Disabilities. Over a thousand people with an intellectual disability will participate in interviews, questionnaires and a biomarker research based on hair- and urine analyses (Tactus, 2009).
Literature research shows that substance use and misuse among people with an intellectual disability is a growing problem. So far it has received little scientific attention as researchers are weary of working with ID people because of their cognitive limitations and also because of a lack of funding. As a result there are no numbers available on how many ID adolescents drink alcohol and smoke cigarettes, making them a riskgroup for future addiction problems. Therefore this study wants to examn the cigarette smoking behaviour and alcohol drinking behaviour of adolescents with an intellectual disability. As ID persons have trouble resiting peer pressure and get addicted more easily it seems important to prevent them from starting the use of tobacco, alcohol and other (illegal) substances. A good way of doing so would be a prevention intervention programme for both adolescents and adults with ID.

2.2 Intervention and prevention programmes for people with an intellectual disability and substance use problems

The treatment of addiction in people with ID is difficult (Clarke & Wilson, 1999). One of the problems is a lack of training in working with persons with an intellectual disability among staff in subsance misuse services. Secondly the intellectual disablility means that their clients have difficulties with comprehension, abstract reasoning and sometimes reading skills. (Barret & Paschos, 2006). Most treatments work on external motivators, insight in the problem and support from support groups like AA. Unfortunatly most ID addicts are limited in their cognitive abilities and have poor insight into their behaviour (Annand and Ruff, 1998). It is hard for them to comprehend what is being said and what is expected of them. Next to that they find it hard to bond with other people in support groups as they can not identify with other group members (Annand et.al., 1998). These problems mean that addicted ID clients need more time to get positive results out of regular treatment programmes (Longo, 1997; Barret et.al, 2006). Whether addiction care centres are able and willing to provide this time is unknown, according to Cosden (2001) there are no published data about success rates in substance abuse treatment for clients with ID. Also it seems that there are very few, mostly uncontrolled, interventions developed for intellectually disabled clients in the field of substance misuse (Barret et.al., 2006). In this light preventing intellectually disabled persons from using alcohol, tabacco & drugs, thereby preventing them from addiction to these substances, seems even more crucial.


A study by McCusker, Clare, Cullen and Reep (1993) showed that the knowledge on alcohol was significantly poorer among persons with an intellectual disability in comparison to the general population. It also showed a larger susceptability to social pressure to drink alcohol among the ID population (McCusker et.al. 1993). However, very few prevention programs target this population specifically (Kress, et.al. 1993). McGillicuddy et.al (1999) tested 2 prevention intervention programmes which showed that individuals with ID provide reliable data and prevention intervention for persons with ID increase knowledge, at least short-term, and it improves relevant skills. This is a slight win as Leventhal, Fleming & Glynn (1988) showed that by delaying the onset of smoking, one not only decreases the likelihood of continued smoking but also delayed entry into what can be seen as a first step toward illegal substances. The same counts for alcohol. Research done by Monshouwer, Verdurmen, van Dorsselaer, Smit, Gorter and Vollebergh (2008) shows that students who have not had a drink at the age of 15 are very unlikely to start drinking alcohol later on in life.

Back in 1990 Pianta already called for greater attention in discussions of school reform for establishing prevention programs, particularly in special education. This view is supported by Kress et.al. (1993) as prevention programmes reach populations at earlier stages and forestall the development of future impairments.

Schools seem to be the idealic place for prevention intervention programmes and should be the focal point for several reasons (Cowen, Hightower, Pedro-Carroll & Work, 1990; Brandenmuller & Elias 1991):


    • Children’s ability to change makes them good targets

    • Schools provide naturalistic accessibility to the largest number of children for the most extended periods of time

    • Schools curricula can be adapted to include prevention ideas and technologies

    • Because children spend much time there, school can be seen as naturalistic setting for developmentally targeted work

    • Organizationally schools allow the possibility of systematic implementation and assessment

Within mainstream schools this view was adopted and many schools offer prevention programmes on subjects like substance use but also on health education and sex education. Unfortunately this is not the case in all special needs schools who either do not provide prevention programmes or use programmes set up for mainstream population that are to difficult for the intellectually disabled students (Cocco et.al. 2002). The lack of prevention programmes specifically developed for ID adolescents is also a concern of Bridges Robertson and Jackson (1996, p.248) who say that ‘children with learning disabilities are as much in need of smoking prevention programmes as children without learning disabilities’.

Following the line of this information it seems that providing prevention intervention programmes in special needs schools is a good start. In the Netherlands secondary special needs schools held 125.000 students in the year 2008 (MinOCW, 2009). Offering them a good prevention intervention programme on tobacco, alcohol and drugs seems crucial in preventing them from becoming addicts later on in life. However, to our knowledge, no such programme exists at the moment.

2.3 E-learning

E-learning is a relatively new form of learning that was developed in the late 1990’s. The name e-learning was first used in 1999. The popularity of the world wide web took a big flight in the mid 1990’s, handing companies a quick and cheap way of keeping in touch with different relations all over the world and selling their products online. This also meant a lot of training for employees. To keep costs down and help employees study in their own time and pace, new programs were developed, that could be done on a computer, online, either at the office or at home (Rubens, 2003)


After almost 10 years of e-learning it shows that the method is still mainly used for in-company training sessions. On smaller scale the education sector has seen its potentials and is starting to use this way of teaching. No research has been done on the effectiveness of e-learning in the special education system as the main focus has been on the target group mentioned above (Bershin, 2003).

However, there are studies on the effectiveness of e-therapy in which persons with mental health problems receive help online. They show that e-therapy can broaden the possibilities of healthcare and may be an appropriate kind of treatment when applied correctly (Postel, de Haan & de Jong, 2008).


Benefits of working with an e-learning programme are the fact that these kind of programs can be done outside working hours at home, people can work through the program in their own pace and they feel more secure and confident as most programs give the option of looking back at past information, taking away the feeling of having to learn and remember everything at once. Disadvantages for working with an e-learning program could be that people don’t have the skills they need to work on a computer. It also limits the social aspect one would normally have when following a course (Kruse, 2002). Unfortunately no empirical studies were found that can either confirm or refute these pro’s and con’s for working with an e-learning program in favour of traditional education programmes.
It seems that so far no research has been done into using e-learning with people with an intellectual disability. Looking at the benefits mentioned above it seems there might be great potential here. Intellectually disabled people are, just like normal people, very different in their needs and possibilities. Being able to work in their own pace is very important for many of them. Not having to wait for slower classmates or missing information because they have a hard time keeping up will reduce their stress levels. Working with computers is part of the educational program in special needs schools. Many of these students are well capable of working with an computer program, have their own email address, chat online and keep personal websites. In the era of computers and internet it is important to look at new developments and the potential it offers into new learning techniques.
In our opinion E-learning seems to be the perfect new teaching method for students with an intellectual disability as it offers them the option of working in their own pace without the pressure of quicker classmates or the annoyance of slower ones. By working individually behind a computerscreen, wearing headphones they are less easily distracted. Besides these pro’s computers are a modern way of learning that has a high appeal to the adolescent agegroup.

2.4 Prepared in time

The intervention programme “Prepared in time” was developed as an prevention intervention programme that can be used in the 5th and 6th grade of primary school. It targets both children between the ages of 9 – 13 years as well as their parents.



Fig. 1: Startpage Students Prepared in Time & Making your own portrait.
The aim of “Prepared in time” is to prepare children for the moment they will get into contact with tobacco and alcohol. By means of questions, answered by the students, a class profile is made, giving the teachers an idea of the attitudes and intentions of there students. The movies show the students different situations and answering options, thereby strengthening their ability to make their own choices and not give in to peer pressure. By means of games and movies the program tries to increase their knowledge and perception of alcohol and tobacco. It stimulates the students to think about the effects of smoking and alcohol on your body, your health but also on what it does with your social status. Part of the programme is a parent evening that educates and informs the students parents on the dangers of alcohol and tobacco. This way, Tactus tries to not only strengthen the children but also create support in the home environment.

Fig. 2: The Smoking Robot & Drinking-Driving game.

The effectiveness of “Prepared in time” was researched in 2006 by Elke Ter Huurne (Ter Huurne, 2006). She found that the knowledge significantly improved within the experimental group in comparison to the control group. Intention to start smoking was low in general, intention to start drinking before the age of 16 was higher. Only 25% said they would definitely not drink until the age of 16. The attitude of the respondents toward smoking and alcohol was greatly influenced by their age. The older the respondent, the more positive they looked at both smoking and alcohol. Most respondents felt they had great social support in not smoking and drinking. They did not feel much peer pressure. Looking at their self-efficacy it showed that the respondents think they are well capable of keeping away from smoking. Alcohol seems to be seen as more difficult (Ter Huurne, 2006).

“Prepared in time” is a prevention intervention program that was developed for children age 9-13 in the general population. As children with an intellectual disability in general have a slower developmental curve, we assume that the cognitive and emotional development of the studygroup is comparable with the original targetgroup of “Prepared in time”. As e-learning is a new teaching method this study might indicate if it is a method that is suitable to use with ID students. Both the usefulness of the method as well as the effectiveness will be incorporated in this study. By using an existing prevention intervention programme on alcohol and smoking a first step is made in the development and use of a structured prevention intervention programme in special needs schools.


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