Faculteit der Maatschappij- en Gedragswetenschappen
Onderwijsinstituut voor Pedagogische- en Onderwijskundige Wetenschappen
Screening for ACEs and Life Events in Dutch Children with Intellectual
Disabilities in Residential Care
Master thesis Forensische Orthopedagogiek Graduate School of Child Development and Education
University of Amsterdam
E.M. Mink - 11120495 Supervisors: X.M.H. Moonen, Prof, Dr. & J.A.A. Vervoort- Schel, Drs.
Second supervisor: I.B. Wissink, Dr. Amsterdam, June 2019
Index Abstract ... 3 Introduction ... 5 Methods ... 10 Results ... 13 Discussion ... 18 References ... 23 Appendices ... 33
Abstract
Adverse childhood experiences (ACEs) and life events can have numerous negative health and developmental consequences, especially for people with intellectual disabilities (ID) who experience them more often than people without ID. However, there is hardly any knowledge about screening people with ID for ACEs and life events. To bridge this gap, this study focusses on clarifying which ACEs and life events should be included in a future screener for Dutch children with ID.
By means of literature research an inventory of the original and additional ACEs screeners and of life event screeners was made. Subsequently additions and removals of items found from existing screeners were suggested, resulting in a research version of a codebook on ACEs and on life events. Next, casefile research was carried out in a Dutch national center for residential youth care for children with ID ‘De Hondsberg’, to analyze if the ACEs and the life events included in the codebook could be found in the files of 131 children. By
conducting independent samples t-tests, it was determined whether there was a relationship between the summed score of all ACEs and every life event.
Results of this study show that no specific ACEs screeners and just a few life events screeners are available for people with ID. The ACEs and the life events included in the codebook, except for one, were all found in at least one of the casefiles. Further, it was shown that six life events were significantly related to the summed ACEs score.
It can be concluded that in a future screener for Dutch children with ID, the (more specified) items of the original ACEs screener should be expanded with six life event items. However, more research is needed to develop a valid and reliable screener.
Keywords: Adverse childhood experiences, life events, children, intellectual disabilities
Samenvatting
Adverse childhood experiences (ACEs) en life events kunnen diverse gevolgen hebben voor de gezondheid en de ontwikkeling, in het bijzonder van personen met een verstandelijke beperking (VB) die vaker ACEs en life events ervaren dan personen zonder een VB. Er is echter weinig kennis met betrekking tot het screenen van deze doelgroep op ACEs en life events. Daarom focust deze studie zich op de vraag welke ACEs en life events in een toekomstige screener voor Nederlandse kinderen met een VB opgenomen zouden moeten worden.
Door middel van literatuuronderzoek is een overzicht gemaakt van bestaande ACEs- en life event screeners. Vervolgens zijn aanvullingen op en items die mogelijk verwijderd zouden moeten worden uit de bestaande screeners beschreven. Dit heeft geresulteerd in een ACEs en life events onderzoekcodeboek. Daarna is dossieronderzoek uitgevoerd bij een residentiële jeugdzorginstelling voor kinderen met een VB ‘De Hondsberg’ om na te gaan of de ACEs en de life events die in het codeboek waren opgenomen, gevonden konden worden in de dossiers van 131 kinderen. Door middel van t-toetsen voor onafhankelijke steekproeven is vervolgens bepaald of er een relatie was tussen de ACEs somscore en ieder life event.
Resultaten laten zien dat er geen specifieke ACEs screeners en nauwelijks life events screeners beschikbaar zijn voor personen met een VB. Alle ACEs en alle life events
opgenomen in het codeboek, met uitzondering van één life event, zijn gevonden in minstens een van de dossiers. T-toetsen hebben laten zien dat zes life events een significante relatie hebben met de ACEs somscore.
Er kan geconcludeerd worden dat in een toekomstige screener voor Nederlandse kinderen met ID de (meer gespecificeerde) items van de originele ACEs screener uitgebreid zouden moeten worden met deze zes life events. Vervolgonderzoek is echter nodig voor het ontwikkelen van een betrouwbare en valide screener.
Trefwoorden: Adverse childhood experiences, life events, kinderen, verstandelijke beperking
Screening for ACEs and life events in Dutch Children with Intellectual Disabilities in Residential Care
Adverse childhood experiences (ACEs) are “childhood events, varying in severity and often chronic, occurring in a family or social environment and causing harm or distress” (Kalmakis & Chandler, 2014, p. 1490). A more extensive and recent definition of ACEs is used by McLaughlin (2016): “Exposure during childhood or adolescence to environmental
circumstances that are likely to require significant psychological, social, or neurobiological adaptation by an average child and represents a deviation from the expectable environment” (p. 363). In the first ACEs study dating from 1998 by Felitti and colleagues, 10 adverse child experiences were included: substance abuse within a household, divorce or separation of parents, mental illness of family members, criminal behavior of family members, a mother or stepmother who was treated violently within the household, physical, - psychological, - or sexual abuse and emotional- or physical neglect (Felitti et al., 1998; Stevens, 2012). ACEs are not identical with traumatic events. Trauma is based on adverse life events but is induced by the reaction of a person to that event (Yule, Williams, & Joseph, as cited in Wigham, Hatton, & Taylor, 2011). ACEs only include events or circumstances in the environment of a person (McLaughlin, 2016). Moreover, McLaughlin (2016) states that “traumatic events occurring in childhood represent one potential form of childhood adversity, but not all types of childhood adversity are traumatic” (p. 364). Whether a life event is traumatic for a person is determined by the interaction between that person and several factors inside and outside that person (Yule et al., as cited in Wigham et al., 2011).
Population- based studies indicate that experiencing ACEs is common (McLaughlin, 2016). Correspondingly, Copeland, Keeler, Angold, and Costello (2007) describe that more than half of all children have experienced at least one ACE. Felitti and Anda (2009) describe in their ACEs study, that of 17000 people who participated in their research, 67 % had experienced at least one ACE (Topitzes, Pate, Berman, & Medina- Kirchner, 2016).
Additionally, research from Kuiper, Dusseldorp, and Vogels (2010) concerning 2208 Dutch adults, shows that 44 % of the adults has experienced one or more ACEs. Also, 45 % of 680 Dutch pupils attending class in the so called group 7 and 8 in elementary school (average age 11.46), have experienced one or more ACEs in the past or in the present (Vink, Van der Pal, Eekhout, Pannebakker, & Mulder, 2016).
Experiencing ACEs can have numerous negative consequences for children (Hunt, Slack, & Berger, 2017). Research shows that ACEs are connected to a higher chance of learning disabilities, behavioral-, attention- and social problems (Burke, Hellman, Scott,
Weems, & Carrion, 2011; Jimenez, Wade, Lin, Morrow, & Reichman, 2016). Furthermore, children with behavioral problems have an increased likelihood of mental illnesses at a clinical level, physical health issues and participation in health risk behaviors when they are older (Fanti, Henrich, & Coll, 2010). Experiencing ACEs is also related to an increased risk of physical illness, psychological illness and developmental disruptions (Kalmakis & Chandler, 2015). These consequences are connected to ACEs through, amongst other things, stress symptoms (Finkelhor, 2017). “Chronic, elevated levels of stress are associated with biologic consequences that negatively affect growth onset, duration of puberty, metabolism, disease susceptibility, as well as social, emotional and cognitive functioning” (Beckmann, 2017, p. 28).
Besides that children can be influenced by the consequences of ACEs they have experienced, they can also be influenced by ACEs that their parents have experienced. According to Küffer, Thoma, and Maercker (2016) “existing data derived from
transgenerational research suggest that parentally experienced early-life adversity exerts a meaningful impact on the next generation’s mental health” (para. 1). Children can be
influenced psychologically, epigenetically and through behavioral mechanisms by ACEs their parents have experienced (Lê-Scherban, Wang, Boyle-Steed, & Pachter, 2018).
However, not everyone is equally sensitive for experiencing ACEs. People with intellectual disabilities are supposed to be more sensitive in experiencing negative or possible traumatic events based on ACEs (Mevissen, Didden, & De Jongh, 2016). According to the Diagnostic and Statistical Manual of Mental Disorders fifth edition (DSM-5) a person is considered to have intellectual disabilities when: (1) there are deficits in intellectual functioning (i.e. maximum total IQ-score around 70 to 75), (2) limited adaptive social functioning and (3) the disability occurred during childhood development (American Psychiatric Association, 2013). The adaptive behavior is considered limited when there are deficiencies in the adaptive behavior of a person with respect to their chronical age and culture (Nederlands Jeugdinstituut, 2018a). The deficiencies must concern the following areas: communication, self-care, living independently, social skills, relational skills, using community facilities, making independent decisions, functional intellectual skills, work, relaxation, health and safety. In Dutch practice a person with a total IQ- score lower than 85 can sometimes also be seen as a person with intellectual disabilities (De Beer, 2011). This is because of a shift in the emphasis in the definition of intellectual disability from IQ to deficits in adaptive functioning (Moonen, 2014). Nationwide, the emphasis is shifting from the exact IQ-score to the extent of the support that a person needs. Therefore, people with IQ-scores
between 70 and 85 are also seen as people with intellectual disabilities when they experience limitations in their adaptive behavior.
Causes of the increased sensitivity of people with intellectual disabilities are of
biological, - psychological- and social nature (Martorell & Tsakanikos, 2008; Mevissen et al., 2016). Amongst other things, the limited adaptive functioning of people with intellectual disabilities may induce their increased sensitivity in experiencing ACEs. According to McLaughlin (2016) experiencing ACEs requires significant adaptation by an average child. But, the capability to react to a situation or to the environment is influenced by the limitations in adaptive functioning of people with intellectual disabilities (The Arc, 2009). Additionally, Northway (2017) states that people with intellectual disabilities may not be as resilient as people without intellectual disabilities. Resilience is described as “a positive, adaptive response in the face of significant adversity” (National scientific council on the developing child, 2015, p. 1). It is found that in stressful situations the use of coping strategies is often limited for people with intellectual disabilities (Dekker- Van der Sande & Janssen, 2010).
Due to the different factors that contribute to the increased sensitivity in experiencing ACEs, it is possible that people with intellectual disabilities are more vulnerable to a broader range of ACEs, including life events. “The concept of life events is used to describe exposure to situations that demand coping and readjustment” (Holmes & Rahe, as cited in Hove, Assmus, Braatveit, & Havik, 2017, p. 697). Examples of life events are: moving to another place to live, having an illness or injury that requires hospitalization, experiencing an accident or getting injured in an accident, having financial problems, the death of a close family
member and serious illness of a close family member or a close friend (Hastings, Hatton, Taylor, & Maddison, 2004; Meltzer, Gatward, Goodman, & Ford, 2000). Life events are more common among people with intellectual disabilities then among people without intellectual disabilities (Hatton & Emerson, 2004). As ACEs, life events can as well influence the mental health of people with intellectual disabilities, and they are more sensitive to the negative consequences of life events (Hatton & Emerson, 2004; Mevissen et al., 2016). However, life events are events with a definite beginning and end, in contrast to ACEs which are
experiences that are often chronic (Goodyer, 1996; Kalmakis & Chandler, 2014). Also, “experiences classified as childhood adversity must occur prior to adulthood, either during childhood or adolescence” (McLaughlin, 2016, p. 363).
Little research is done concerning the negative health outcomes of ACEs and of life events in people with intellectual disabilities (Hastings et al., 2004; Santoro, Shear, & Haber, 2018). Bethell et al. (2017) describe that little research has been conducted concerning ACEs
in clinical or community public health settings. In almost all research concerning ACEs only people without intellectual disabilities have been involved. The effects of ACEs and of life events in the general population possibly do not count for people with intellectual disabilities (Wigham et al., 2011). Because of the characteristics associated with intellectual disabilities, there could be a difference between how people with intellectual disabilities experience ACEs and life events and how people without intellectual disabilities experience those events
(Keesler, 2014). Further, in outpatient and residential care for people with intellectual
disabilities, symptoms like emotional- and behavioral problems are often interpreted as a part of the intellectual disabilities, also known as diagnostic overshadowing (Mevissen et al., 2016; Shapiro, 2018). Consequently, is it possible that the experiences of ACEs or life events are overlooked.
In short, there is no substantial base of research addressing ACEs and life events in people with intellectual disabilities, nor can many results be found in ACEs research directly focusing on this specific population. Therefore, people with intellectual disabilities should be included in more research regarding the impact and effects of ACEs and life events.
Correspondingly, Bethell et al. (2017) describe that there is not enough knowledge about procedures to screen for ACEs, whilst these screeners are important to determine whether a person has experienced ACEs and/or life events, considering the possible negative consequences and the sensitivity of people with intellectual disabilities to experience these experiences and events. Both the development and the evaluation of ACEs screeners
(conceivably including life events) are in their early stages, and tools to screen for ACEs are not yet developed or evaluated very well (Finkelhor, 2017). Furthermore, there are barely any standardized tools to assess ACEs (Wigham et al., 2011). Overall, an unambiguous
framework for evaluating ACEs is missing (Bethell et al., 2017). Finkelhor (2017) states correspondingly that there should be developed more sensitive and specific tools to screen for ACEs by conducting extensive and standardized reviews.
Further, it is suggested that, based on research findings, items should be added or removed to improve existing ACE screeners, because ACEs and possible life events that were not yet included in the original ACEs list from Felitti et al. (1998) can also have an impact on a child’s development (Finkelhor, Shattuck, Turner, & Hamby, 2015). Nevertheless, screeners should be compact and only items that predict the most adverse consequences should be included. Finkelhor et al. (2015) found in their study that the ability to predict negative health outcomes was enhanced by considering additional ACEs. Therefore, various adjustments have been proposed. Finkelhor, Shattuck, Turner, and Hamby (2013) implied that peer rejection,
exposure to violence outside the family, low socioeconomic status and poor academic performance, should be added to the ACEs study model designed by Felitti et al. (1998). Bethell et al. (2017) stated that bullying and discrimination are ACEs that are often added to ACEs measurements. Further, Luby, Barch, Whalen, Tillman, and Belden (2017) proposed an ACEs screener in which, amongst other things, poverty, visiting an emergency department, having an invasive medical procedure and a crash with a motor vehicle, plane or boat are included. Also, family relations, living in an unsafe neighborhood, involvement with the foster care system and being an immigrant have been described as additions (Cronholm et al., 2015; Finkelhor et al., 2013; Soleimanpour, Geierstanger, & Brindis, 2017; Udesky, 2018). Not only could these additions contribute to the improvement of ACE screeners and the prediction of negative health outcomes, they might also contribute to the screening of ACEs in people with intellectual disabilities. Moreover, there might be additions specifically relevant for people with intellectual disabilities.
In sum, despite the negative consequences of ACEs, there is a lack of research
concerning ACEs in people with intellectual disabilities and limited knowledge about specific development, evaluation and standardization of ACEs screeners for this population.
The aim of this study is to collect more information regarding ACEs and life events, specifically answering the question which items should be included in an ACEs screener for Dutch children with intellectual disabilities. The answer to this question will be based on theory and on a casefile research conducted in De Hondsberg, a Dutch national center for residential youth care for children with intellectual disabilities. To answer the research question, the following sub questions have been formulated:
(1) Which ACEs and life event screeners for children with intellectual disabilities can be found?
(2) Which items should be added to existing ACEs screeners to make them suitable for screening for ACEs in children with intellectual disabilities?
(3) Which items should be deleted from existing ACEs screeners to make them suitable for screening for ACEs in children with intellectual disabilities? (4) Which ACEs and life events can be found in De Hondsberg casefiles? (5) Which life event items should be added to a future ACEs screener for Dutch
children with intellectual disabilities based on evidence found in De Hondsberg casefiles?
It was expected that not many ACEs and life event screeners specifically for people with intellectual disabilities would be found. Also is wat expected, that many ACEs and life events would be found in De Hondsberg casefiles. This was expected because the target population of De Hondsberg are children with complex behavior and various developmental problems in stagnated situations. Furthermore, it was expected that various life events should be added to a future screener because there could be a link between ACEs and life events.
Methods
This study was conducted in De Hondsberg. De Hondsberg is a Dutch national center for residential youth care which provides clinical observation, diagnostics and explorative treatment for children with intellectual disabilities aging from 0 to 18 years (Koraal, n.d.). These children often have additional complex (psychiatric) problems. Before the start of this study, permission was granted by the ethical committee of the University of Amsterdam (2018-CDE-8871).
Procedure Literature Research
To answer sub question one, a literature research was conducted to examine the existing literature concerning ACEs, life events and ACEs- and life event screeners for people with intellectual disabilities. Literature research is “a representation of the existing knowledge about a specific subject” (Starreveld, 2012, p. 83). Through the literature research an inventory of the existing ACEs screeners and life events screeners was made. The websites Acesconnection.com and theresilienceproject.com were the basis for the search for screeners. Subsequently, a search was conducted for ACEs and life event screeners through the online database of the University of Amsterdam and Google Scholar. The following search terms were used: ACEs, ACEs screeners, ACEs people with intellectual disabilities, life events, life events people with intellectual disabilities. To answer sub questions two and three, additional literature concerning suggested additions to and removals from existing ACEs and life events screeners for people with intellectual disabilities was analyzed. Relevant additions and removals were selected based on scientific literature concerning ACEs, life events and people with intellectual disabilities. A search for additions and removals from existing ACEs
screeners and life events screeners was made by consulting the online database of the University of Amsterdam and Google Scholar. The following search terms were used: ACE screener, life event screener, ACEs screener people with intellectual disabilities, life event screener people with intellectual disabilities, trauma intellectual disabilities, improving ACE,
adverse (life) events people with intellectual disabilities. Eighteen articles concerning suggested additions to and removals from existing ACEs screeners and life events screeners were included in this study.
Procedure Casefile Research
As described above, by means of the literature research an inventory of the existing ACEs screeners and life events screeners was made. Subsequently additions to and removals from existing screeners for people with intellectual disabilities were described. Together, this resulted in an ACEs and life events research version codebook (see appendix 1). The original screener from Felitti and colleagues, of which the items were more specified within this study, was the basis of this codebook. Also, the likelihood the likelihood with which the items would be described in the casefiles was considered.
With this ACEs and life events research version codebook, a casefile research was done to answer sub question four. The casefile research was done by two researchers independently from each other: an employee of De Hondsberg and a master’s student Forensic Child and Youth Care Sciences. These researchers signed a contract of
confidentiality concerning the data to be distilled from De Hondsberg casefiles. Also, all the casefiles were anonymized by an employee of De Hondsberg. Because this research was part of a population survey which took place in De Hondsberg, not only the data necessary for this study, but also the information that was needed for the population survey was distilled from casefiles of De Hondsberg.
The casefile research was conducted on 131 digital and paper files of former clients of De Hondsberg who were discharged in the years 2016 and 2017. By means of the casefile research, it was analyzed if the ACEs and life events that were included in the codebook could be found in the casefiles. The presence of an ACE or life event was scored as ‘1’, the absence of an ACE or life event was scored ‘0’. When an ACE or life event was scored as ‘0’, this could mean that the child had not experienced that ACE or life event, or that that particular ACE or life event was not mentioned in the casefile.
In De Hondsberg standardized formats are used for describing information in the casefiles (Vervoort-Schel et al., 2018). “The casefiles included reports from previous and externally involved youth care settings as well as reports from the involved and individually adjusted multidisciplinary team of De Hondsberg consisting of psychologists, psychiatrists, (system) therapists, pedagogues, physicians and residential care mentors” (Vervoort-Schel et al., 2018, p. 7). Information about the child, the parents, and the family context was included
in the reports within the casefiles (Vervoort-Schel et al., 2018). The following sections of each casefile were examined: psychodiagnostic report(s), application data, care plan (part: general) and final report (parts: reports, group, medical, advise, psychomotoric aspects).
After finishing the casefile research, the interobserver reliability was calculated using ‘the proportion of agreement’ between the two researchers analyzing the files, to ensure the reliability of the gathered data (Sande, 1999). The interobserver reliability was 99.1% (see appendix 2). This can be seen as very high (Warrens, 2015).
Descriptives
The initial research sample contained 134 digital and paper files of children who were discharged from De Hondsberg in 2016 and 2017. Three of these files were removed from the sample due to incomplete files. 131 Files (N = 131) were analyzed to answer sub question four.
This sample included the files of 43 girls (n = 43 girls) and 88 boys (n = 88 boys). The age of the children in the sample was between 2 and 17 years old (M = 10.99, SD = 3.4). Of the 131 children in the sample 90.2% (n = 119) were born in the Netherlands, 8,6% (n = 11) were born in another country. Of one person the country of birth was unknown. All these children (N = 131) had at least one placement in residential care, because they all have experienced residential placement at De Hondsberg.
Further, the total IQ- score (TIQ) of 15.9% (n = 21) of the children was between 71-75. Of 15.2% (n = 20) of the children the TIQ score was between 76-80 and of 13.6% (n = 18) between 66-70. Of 8.3% (n = 11) the TIQ score was between 56-60 and of 8.3% (n = 11) lower than 55. The other 35.7% (n = 47) had an TIQ score ranging from lower than 50 till 86-90. This last group also included children with a disharmonious intelligence profile. The TIQ score of three children was unknown.
Statistical Analysis
For analyzing the results, two subgroups were created: 1) original ACEs and 2) life events. The original ACEs were the original ACEs as described by Felitti et al. (1998) in their original ACEs study of which some were more specified for this study, adding to 15 items. All items found in other ACEs- and life event screener and through the ACEs and life event additions and removals search were defined as life events in the codebook, because there is little agreement among scholars which of these additional items should be considered ACEs or life events, as the definition of ACEs is an ongoing process (McLaughlin, 2016).
The fifth sub question was answered by applying independent samples tests. These t-tests were conducted to determine which ‘life events’ showed a significant relation with the ‘summed ACEs score’, thus answering the question which life events could be relevant to add to a future screener in addition to the 15 original ACEs items.
To perform these t-tests, the two created subgroups, ‘ACEs’ and’ life events’ were used. All scores on the ACEs found in the casefile research were summed, and one variable was created of those summed scores. Subsequently a t-test was performed for each life event. The t-tests were performed in IBM SPSS Statistics 24.
The data had to meet several assumptions in order to perform t-tests: (1) The data had to be measured at interval or ratio level, (2) variance of the groups had to be roughly the same for each group, (3) the population of which the data was drawn had to be normally distributed (Brace et al., 2016). The second and third assumption were met. For the first assumption the Central limit theorem was applied assuming that the assumption of normality is met when using a large sample (> 30) (Agresti & Franklin, 2009).
Based on the results of the five prior sub questions, the general research question was answered.
Results Literature Research
To gain insight into the existing ACEs screeners, a search was conducted for ACEs screeners for people with intellectual disabilities. However, there were no existing ACEs screeners found suitable for people with intellectual disabilities. Instead, all ACEs screeners that were available in general were included in this study. 20 ACEs screeners were found, including the original screener as described by Felitti et al. (1998). In Appendix 3 an overview of all ACEs screeners is presented, for which the original Felitti screener was the basis. The items in appendix 3 that are named ‘in addition to the original ACEs’ were not included in that original screener.
Also, an overview of the life events screeners is presented, see appendix 4. 18 Life events screeners were found, of which 4 were described as suitable for screening people with intellectual disabilities. Because of the limited number of life events screeners specifically developed for screening people with intellectual disabilities, all 18 life events screeners were included in this study.
Further, an overview of suggested additional items to, and removals from existing ACEs and life event screeners for people with intellectual disabilities is presented, see
appendices 5 and 6. None of these additions and removals are specifically described by the authors to use for screening in people with intellectual disabilities. Because of the lack of research on ACEs and life events in people with intellectual disabilities, the search was extended to additions and removals applicable in the general population.
Based on all the ACEs screeners, life event screeners, suggested additions, suggested removals, and research on screening for ACEs (in people with intellectual disabilities), a selection of items was made that was used in the casefile research. The original screener from Felitti et al. (1998) was the basis for this selection. Some of the 10 ACEs of the Felitti
screener were more specified before they were included. Furthermore, it was taken into consideration the likelihood with which the gathered items would be described in the casefiles. Therefore, items concerning feelings and/or thoughts were not included in this study. Almost all other items were included in the casefile research. 15 ACEs items were named original, see table 1 (items from the Felitti screener and some of those items more specified adding to 15 items), and 17 life events see table 2 (all other items found in screeners and literature) were identified. An oversight of the included items and their meaning within this study can be found in appendix 7.
Table 1 Original ACEs
Physical abuse Sexual abuse,
undergoing Parental separation/divorce Parent using drugs Emotional abuse Sexual abuse, watching Witness of violence
against a parent, verbal Parental mental health problems, biological father Physical neglect Sexual abuse, forced to
do with someone else Witness of violence against parent, physical Parental mental health problems, biological mother
Emotional neglect Parental incarceration Parent using alcohol excessively
Table 2 Life Events
Life threatening illness
Death inside/outside family Separation parent-child through
immigration Bullied, cyber
Debts family Number of placements in
residential care or foster care Involvement justice system parent
Housing problems family Accident, happened to the child Problematic caregiver- child relationship
Life threatening illness child Accident, seeing it happen Not attending school before admission
Hospital stay child Number of movements with family Casefile Research
Subsequently in the casefiles the items selected by means of the literature research were searched for. All 15 items described as original ACEs were found in the casefiles of De Hondsberg. The items ‘sexual abuse, watching’ (n = 4) and ‘sexual abuse, forced to do with someone else’ (n = 4) were least present. The item ‘parental separation/ divorce’ (n = 88) was found most in the casefiles. In Graph 1 the ACEs items found in the casefiles are presented graphically.
Of the 17 life events included in the search, 16 were found in De Hondsberg casefiles. The item ‘two or more placements in residential care’ (n = 55) was found most. Only two or more placements were identified because all the children (N = 131) had at least one placement in residential care, because they all resided in De Hondsberg. The item ‘refugee past child’ (n = 0) was not found in the casefiles. In graph 2 the life event items found in the casefiles are presented graphically.
Graph 1
Number of Original ACEs Found in Casefiles
Graph 2
Number of Life Events Found in Casefiles
Relation between ACEs and life events
To determine which life events should possibly be added to a future screener, t-test were conducted to determine which ‘life events’ showed a significant relation with the ‘summed
0 10 20 30 40 50 60 70 80 90 100 110 120 130 0 10 20 30 40 50 60 70 80 90 100 110 120 130
ACEs score’. It was found that 6 life events were significantly related to the summed ACEs score (see table 3). No significant results were found for 11 life events.
Table 3
Significant T-tests with Life Event as Factor and the Summed ACEs Score as Dependent Variable
Life event p-value
Death inside/outside family .022
Debts family .008
Housing problems family .018
Number of placements in residential care or foster care .000
Involvement justice system parent .000
Problematic caregiver- child relationship .022 Note. *p < .05.
Summary Results
To summarize the results, 5 sub questions had to be answered: (1) Which ACEs and life event screeners for children with intellectual disabilities can be found? (2) Which items should be added to the existing ACEs screeners to be suitable for screening for ACEs in children with intellectual disabilities? (3) Which items should be deleted from existing ACEs screeners to be suitable for screening for ACEs in children with intellectual disabilities? (4) Which ACEs and life events can be found in De Hondsberg casefiles? (5) Which life event items should be added to a future ACEs screener for Dutch children with intellectual disabilities based on evidence found in De Hondsberg casefiles?
This study has showed that there are no ACEs screeners and few life event screeners for people with intellectual disabilities. Of the suggested additions to, and removals from existing ACEs and life event screeners, none were specifically described by the authors to use for screening in people with intellectual disabilities. Of all the selected ACEs and life events trough literature research, all ACEs items were found in de casefiles of De Hondsberg. Of all the selected life event items, only one was not found in the casefiles of De Hondsberg. However, only 6 life events were significantly related to the summed ACEs score. Based on the results, table 4 summarizes which items should be included in a future ACEs screener for Dutch children with intellectual disabilities.
Table 4
Items for a Future ACEs Screener
Physical abuse Sexual abuse, forced to
do with someone else Parent using drugs Number of placements in residential care or foster care Emotional abuse Parental incarceration Parental mental health
problems, biological father Involvement justice system parent Physical neglect Parental
separation/divorce Parental mental health problems, biological mother Problematic caregiver- child relationship Emotional neglect Witness of violence
against a parent, verbal Death inside/outside family Sexual abuse,
undergoing Witness of violence against parent, physical Debts family Sexual abuse,
watching Parent using alcohol excessively Housing problems family
Discussion
The purpose of the current study was to clarify which ACEs and life events items should be included in a future ACEs screener for Dutch children with intellectual disabilities. Based on previous research it was expected that not many ACEs or life event screeners suitable for people with intellectual disabilities would be found. Further, it was expected that various life events should be added to a future screener because there seemed to be a link between ACEs and life events. Also, it was expected that many ACEs and life events would be found in De Hondsberg casefiles.
Results showed that all the original ACEs items were found in the casefiles. Therefore, all the original ACEs should probably be added to a future ACEs screener for Dutch children with intellectual disabilities. 6 Of the 17 life events showed a significant relation with the summed ACEs score. So, these 6 life events should probably be added to a future ACEs screener for Dutch children with intellectual disabilities. The life event items that were found in the casefiles (16 out of 17) but were not significantly related to the summed ACEs score, might be relevant items but it cannot be advised to included them in a future screener because of the results found in this study. Subsequently, to answer de research question Which items should be included in an ACEs screener for Dutch children with intellectual disabilities?, it can be concluded that a future ACEs screener should include all the selected ACEs items in
this study (15) (the 10 items of the original screener of Felitti, and the more specified items of that original screener), completed with 6 life event items.
To determine which life events should be added to a future ACEs screener for Dutch children with intellectual disabilities, t-tests were conducted. It was concluded that the life event items of which the t-tests showed a significant relation with the summed ACEs score should be added to a future screener. Nonetheless, Bijleveld and Commandeur (2012)
describe that when a significant relation between items is found, these items could as well be represented in one variable that summarizes the related variables. Related items could
describe similar experiences. Therefore, it is possible that the life event items that did not show a significant relation to the summed ACEs score, could have contributed to a future ACEs screener because they could describe new, non-similar experiences. However, in this study, it was decided to add the life events which showed a significant relation with the summed ACEs score, because it was still unknown if there would be significant relations between ACEs and life events. Consequently, there might be advised life event items for the future screener that describe experiences that are similar to the advised ACEs items.
Of the 17 life events included in this study, 6 were related to the summed ACEs score, namely: ‘death inside/outside family’, ‘debts family’, ‘housing problems family’, ‘number of placements in residential care or foster care’, ‘involvement justice system parent’, and ‘problematic caregiver- child relationship’. This can possibly be explained because of the content of the items. All items, except for ‘debts family’ and ‘housing problems family’, deal with disrupted family situations. The life events that were not found to be related to the summed ACEs score can affect the family, but the family does not have to be disrupted. McCarthy (2001) describes that the emotional reaction and the support of parents to the child after a traumatic event influences the health outcomes of the child after experiencing such an event. This applies to children with intellectual disabilities even more because they are more dependent on others for their care. Additionally, Vervoort-Schel et al. (2018) state that
“sources of ACEs originated initially from the family unit” (p. 2). Thus, both the experiencing of ACEs as the health outcomes as a consequence of experiencing ACEs, are influenced by family. Therefore, is it possible that items dealing with disrupted families are closer related to the summed ACEs score.
The items ‘debts in family’ and ‘housing problems family’, both indicators for poverty, are an exception. Poverty does not necessarily lead to a disrupted family life. However, in several studies it is described that poverty, or issues that can be interpreted as a characteristic of poverty, could be an additional source of ACEs (Finkelhor et al., 2013;
Finkelhor et al., 2015; Kalmakis & Chandler, 2014; Soleimanpour et al., 2017; Wade, 2016). Because various authors describe (indicators of) poverty as an additional ACE to the original ACEs, this seems to be a valuable addition to the original ACEs, making it more likely for these life event items to be relevant for a future screener, and for these items to be related to the summed ACEs score within this study.
Furthermore, for 11 life events no relationship was found with the original ACEs in this study. This can be explained by the limited amount of research conducted concerning negative health outcomes of ACEs and life events in children with intellectual disabilities (Hastings et al., 2004; Santoro et al., 2018). Moreover, there is no clear definition of ACEs. This definition is still in development, and an unambiguous framework for evaluating ACEs is absent (Bethell et al., 2017; McLaughlin, 2016). Subsequently, in this study, life events have been included with little agreement among scholars. Also, items that were not
specifically connected with people with intellectual disabilities were included. As a result, life events that may be less relevant for children with intellectual disabilities might be included in this study. Subsequently it is possible that several life events showed no relationship with the summed ACEs score in this study.
However, all, but one, ACEs and life events were found in the casefiles of De
Hondsberg. The increased sensitivity of people with intellectual disabilities for experiencing ACES possibly explains why all, but one, ACEs and life events were found in De Hondsberg casefiles, despite the fact that there was not found a significant relationship between every life events and the summed ACEs score (Mevissen et al., 2016). Consequently, it might also be possible that more ACEs/ life events apply for Dutch children with intellectual disabilities than emerged this study. Further, of the 131 children in the sample, 90.2% (n = 119) was born in the Netherlands, making it unlikely to find many children in the sample with a refugee past.
This study has several strengths. One of the strengths is the high interobserver reliability (99.1%). “The reliability of observations is depended on the accuracy of the observatories” (Sande, 1999, p. 107). So, the subjectivity of the observers did not have a major influence on the observations that were made (Nederlands Jeugdinsituut, 2019). Another strength is the subject of this study. So far, hardly any research has been conducted concerning ACEs in children with intellectual disabilities. Correspondingly, Finkelhor (2017) states that more sensitive and specific tools to screen for ACEs should be developed through extensive and standardizes reviews. This study may contribute to the development of more knowledge about ACEs and ACEs screening in children with intellectual disabilities. Which makes this study of value for both practice and research. Further, the extensive files used in
this study are also a strength. In De Hondsberg there is a multidisciplinary team approach, which means that in the casefiles, information from various disciplines is described. This made it possible to obtain diverse information about the background of many children, so that a lot of information about ACEs and life events could be collected.
This study also has some limitations. A limitation is the kind of research that has been used, casefile research. Through the casefile research, all records of behavior of the client are viewed, but in these files, feelings and thoughts of children and parents are hardly described (Alphen, 2017). Feelings of people with intellectual disabilities like “did you often or very often feel that no one in your family loved you of thought you were important or special” (Aces too high news, n.d, para. 4), which also can be ACEs/life events, are thus not included in this study. These feelings and thoughts might be important ACEs/life events and should be included in a future screener for children with intellectual disabilities but based on the current study no evidence for these kinds of items is found. Further, it is possible that because
feelings and thoughts are hardly described in the casefiles, ACEs/life events have been underreported in the casefiles. Another limitation is scoring ‘0’ when the ACE/life event was not described in the casefiles. Due to this scoring, it is impossible to distinguish between the fact that a child did not experience an ACE/life event or that the ACE/life events was not mentioned in the casefiles. A last limitation is that the ACEs of parents were not included in this study. Children can be affected by ACEs that their parents experienced (Lê-Scherban et al., 2018). Also, Küffer et al. (2016) state that early-life adversity can influence the mental health of the next generation. This might also apply for children with intellectual disabilities. Therefore, parental ACEs could be relevant to include in a future ACEs screener.
Based on the results, strengths, and limitations of the current study recommendations for future research can be made. A first recommendation is to use interviews besides casefile research. By means of interviews deepened insights in observations, opinions, beliefs, and feelings of a person can be found (Rijksuniversiteit Groningen, 2018). However, the level of development and the possible limited extent to which the child can express its feelings and thought verbally must be taken into account. A second recommendation is to include parental ACEs in future research. This could lead to more knowledge concerning the relationship between parental ACEs and the ACEs that children with intellectual disabilities experience. Both children with intellectual disabilities and their parents could benefit from this, because that new knowledge could be used in a future screener and in therapeutic practice in various ways. A third recommendation is to conduct more research concerning ACEs in children with intellectual disabilities. This could enhance scientific and practical knowledge and could
contribute to the development of ACEs screeners suitable for children with intellectual
disabilities. Additionally, when more research is conducted, further information about specific groups of children with intellectual disabilities and ACEs could be gained as children with intellectual disabilities “represent a heterogeneous group with a varied range of highly complex needs” (Bouras & Jacobson, 2002, p. 162).
Overall, it can be concluded that more knowledge about ACEs in children with intellectual disabilities and about the screening of these children on ACEs is needed. Even though the results of this study are not unambiguous, they indicate that many different ACEs and life events should be included in a future ACEs screener. However, more research is needed to develop a valid and reliable screener for Dutch children with intellectual disabilities.
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Appendices
Appendix 1, Codebook with ACEs and life events included within this study marked Personalia Naam Geslacht Geboortedatum Geboorteland Datum in zorg Datum uit zorg Leeftijd bij opname Leeftijd bij ontslag Groep
Variabelen in- en uitstroom
Label SPSS Operationalisatie Bron
Verblijf voor opname 1. Thuis 2. Thuis met ambulante hulp, 3. VG- instelling 4. LVG-instelling 5. Crisis 6. Pleegzorg 7. Justitieel 8. Gezinshuis 9. Familie 10. Kinder- en jeugdpsychiatrie
Aanmeldingsformulier (AMF), Zorgplan Jeugdhulpregio 42 jeugdhulpregio’s Nederland Excel bestand Cura Maatregel 1. Niet bekend 2. Geen/vrijwillig 3. OTS 4.
OTS uithuisplaatsing 5. Voogdij 6. Justitieel 7. Drangmaatregel
AMF
Verwijzende instantie 1 & (2) Naam verwijzende instantie Contactadressen Cura/AMF Vervolgplek 1. Thuis 2. Thuis met ambulante hulp, 3.
VG- instelling 4. LVG-instelling 5. Crisis 6. Pleegzorg 7. Justitieel 8. Gezinshuis 9. Familie 10. Kinder- en jeugdpsychiatrie
Eindverslag
Variabelen systeem
Label SPSS Operationalisatie Bron
Geboorteland biologische
moeder Land biologische moeder AMF
Geboorteland biologische vader Land biologische vader AMF Culturele achtergrond gezin Culturele achtergrond Dossier Opvoedtaal 1. Nederlands 2. Tweetalig 3. Andere taal Zorgplan
Geloof 1 = ja, 0 = nee AMF
Gezag 1. Beiden 2. Moeder 3. Vader 4. Instelling
5. Familielid AMF
Opleiding biologische vader Biologische vader. Basisschool,
praktijkonderwijs, VMBO, HAVO, VWO, MBO, HBO, WO, WO+, geen
AMF, Dossier Opleiding biologische moeder Biologische moeder. Basisschool,
praktijkonderwijs, VMBO, HAVO, VWO, MBO, HBO, WO, WO+, geen
AMF, Dossier Leeftijd moeder bij geboorte kind Leeftijd
