Research in Developmental Disabilities 59 (2016) 166–175

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Research in Developmental Disabilities

Scale of emotional development—Short Tanja Sappok a,∗ , Brian Fergus Barrett b , Stijn Vandevelde c , Manuel Heinrich a , Leen Poppe d , Paula Sterkenburg e , Jolanda Vonk f , Juergen Kolb b , Claudia Claes d , Thomas Bergmann a , Anton Doˇsen g , Filip Morisse d a

Königin-Elisabeth-Herzberge Hospital, Department of Psychiatry, Psychotherapy and Psychosomatics, Berlin, Germany St. Lukas-Klinik, Specialized Clinic for Individuals with Intellectual Disabilities, Department of Psychiatry and Psychotherapy, Liebenau, Germany c Ghent University, Department of Special Needs Education, Ghent, Belgium d University College Ghent, Faculty of Education, Health and Social Work, Ghent, Belgium e Department of Clinical Child and Family Studies, VU University Amsterdam, The Netherlands & Bartiméus, Doorn, The Netherlands f Lunet Zorg, Health Centre, Eindhoven, The Netherlands g Emeritus Professor University Nijmegen, Psychiatric Aspects of Intellectual Disability, Nijmegen, The Netherlands b

a r t i c l e

i n f o

Article history: Received 9 May 2016 Received in revised form 29 August 2016 Accepted 31 August 2016 Available online 7 September 2016 Number of reviews completed is 2. Keywords: Intellectual disability Emotional development Assessment Mental health Challenging behavior Cross-cultural approach

a b s t r a c t Background: Intellectual disability (ID) is often accompanied by delays in emotional development (ED) that may result in challenging behavior. Insight into emotional functioning is crucial for appropriate diagnostic assessment in adults with ID. However, few standardized assessment instruments are available. Aims: The aim of this study was to develop a short, psychometrically sound instrument for assessing levels of ED in individuals with ID: The Scale of Emotional Development – Short (SED-S), which can be applied to adults. Methods and procedures: The Scale for ED – Revised2 (SED-R2 ) was taken as a point of departure. In a first step, the validity and observability of the items (N = 556) in the SED-R2 were assessed by 30 experts from Germany, Belgium, and The Netherlands. The SED-S was then constituted in a consecutive consensus process, in which items to be included were selected based on their assessments and subsequently rephrased, and in which the structure and method of administering the new scale were agreed upon. Outcomes and results: The SED-S consists of 200 binary items describing five levels of emotional functioning (reference ages: 0–12 years) within eight domains: Relating to His/Her Own Body, Relating to Significant Others, Dealing with Change – Object Permanence, Differentiating Emotions, Relating to Peers, Engaging with the Material World, Communicating with Others, and Regulating Affect. Conclusions and implications: The SED-S offers an empirical-based, practical tool to assessing ED in adults with ID. Further research will be needed to meet the requirements of a standardized diagnostic instrument. © 2016 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

∗ Corresponding author. E-mail address: [email protected] (T. Sappok). http://dx.doi.org/10.1016/j.ridd.2016.08.019 0891-4222/© 2016 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/ licenses/by-nc-nd/4.0/).

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What this paper adds The SED-S offers an empirical-based, practical tool to assessing the level of emotional development in persons with ID. As a cross-cultural instrument, it supports professionals to identify the clients’ basic emotional needs by attuning their demands and the interventions accordingly. This approach aims to reduce challenging behavior and to improve mental health and wellbeing in persons with ID. 1. Introduction With estimates ranging from 30 to 60%, the prevalence of mental disorders in individuals with intellectual disability (ID) is several times higher than in the general population (Anda et al., 2006; Deb, Matthews, Holt, & Bouras, 2001). These studies differentiate between psychiatric disorders as such and challenging behavior, e.g. physical aggression, destruction of property, self-injury, pica, and related agitated/disruptive episodes. Psychiatric disorders and challenging behavior may coexist or occur independently and are not necessarily be causally related. According to some authors, the overall rate of psychiatric disorders in adults with ID does not differ significantly from that seen in the general population if challenging behavior is excluded (Deb et al., 2001). Differentiating between challenging behavior and psychiatric disorders can be difficult, however. With decreasing IQ, behavior and symptoms lose their specificity for particular mental disorders and take the form of non-specific challenging behavior. Due to this ambiguity, the same treatment is often applied to both problems. According to Deb (2012), 25%–45% of individuals with ID receive psychotropic medication, and approximately 30% of these receive it due to challenging behavior. In individuals exhibiting aggressive behavior, psychotropic drugs are prescribed in 90% of cases. However, the utility of psychotropic medication in coming to terms with challenging behaviour is questionable (Brylewski & Duggan, 2000; NICE Guideline, 2015; Tyrer et al., 2008). In order to better understand and deal with challenging behavior in individuals with ID, Anton Doˇsen (1990) developed an approach based on theories of psychosocial development (e.g. psychodynamic theories, development of attachment and self/ego development) and findings on physiological brain development. This “developmental-dynamic approach” focuses on providing insight into the underlying basic emotional needs and motivations as a basis for better understanding and addressing the respective behavior. The “developmental perspective” (Cicchetti & Cohen, 1995; Greenspan & Benderly, 1998; Greenspan, 1997; Harris, 1998) supports the developmental-dynamic approach. Building on Doˇsen’s work and the findings of brain research, it focuses on personality development and adaptation with special emphasis on ED (Cicchetti & Cohen, 1995; Greenspan & Benderly, 1998; Harris, 1998; Rutter, 1980). In this integrated model, personality is conceptualized as the result of cognitive, social, and emotional development (Greenspan & Benderly, 1998; Harris, 1998; Izard, Youngstrom, Fine, Mostow, & Trentacosta, 2006), with these three aspects determining the overall level of personality development. According to the developmental perspective, individuals at a certain stage of personality development show specific adaptive or maladaptive behavior and have certain basic emotional needs that must be met by the environment so that psychosocial homeostasis can be attained and further development is possible (Doˇsen, 2005a,b). Cognitive and emotional brain functions closely interact and stimulate each other, but specific brain regions focusing on more cognitive (e.g. language) or emotional (e.g. anxiety) aspects may develop independently from one another (Kandel, 2006; LeDoux, 2002; Panksepp & Biven, 2012). In individuals with ID, this can result in a disparity between emotional and cognitive competencies (Doˇsen, 1990, 2014), with delays in either direction. Since the level of emotional functioning is decisive in determining internal motivations and (mal-)adaptive behavior (Sappok et al., 2013), assessing ED levels can help caregivers better understand clients’ behavior by providing insight into their inner experience (Doˇsen & De Groef, 2015, 2015; Doˇsen, 2014). In summary, emotional development is a key factor in determining the adaptive and/or maladaptive behavior shown by individuals with ID, and challenging behavior can be the result of delayed development and associated neglect of basic emotional needs (Sappok et al., 2012a). Assessing ED can aid in the diagnostic process and contribute to a better understanding of challenging behavior. By enabling parents and caregivers to identify basic emotional needs, it can help them to better meet those needs in order to encourage healthy development and to provide better treatment and support for individuals with intellectual disabilities. A number of instruments and tools have been designed for use in assessing emotional development (Claes & Verduyn, 2012; Morisse & Doˇsen, 2016; Sappok & Zepperitz, 2016; Vandevelde et al., 2016). Instruments that focus on ED and related constructs include the Levels of Emotional Awareness Scale (LEAS; Lane, Quinlan, Schwartz, Walker, & Zeitlin, 1990) the Infant-Toddler Social and Emotional Assessment (ITSEA; Carter and Briggs-Gowan, 2000), the Functional Emotional Assessment Scale (FEAS; Greenspan, DeGangi, & Wieder, 2001), the Frankish tool (Frankish, 2013), and the Experimentele Schaal voor de beoordeling van het Sociaal Emotionele Ontwikkelings Niveau (ESSEON-R; “Experimental Scale for the Assessment of the Social-Emotional Developmental Level”; Hoekman, Miedema, Otten, & Gielen, 2014). Based on the developmental understanding of emotional functioning outlined above, Anton Doˇsen (1990) devised the Scheme for Appraisal of Emotional Development (SAED) to assess ED levels according to a five-stage model based on the normative trajectory of typical development in children. The SAED is applied as a semi-structured interview with caregivers,

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whose responses are scored to provide estimates of a client’s current level of ED in ten domains as well as his/her overall level (cf. “Material and Methods”). The Scale for ED-Revised (SED-R; Claes & Verduyn, 2012) and the Scale for ED-Second Revision (SED-R2 ; Morisse & Doˇsen, 2016) build on the SAED, using the same five-stage model of emotional development, but incorporating three additional domains (cf. “material and methods”). These comprehensive scales were primarily designed to guide case conferences and to encourage teams of caregivers to take a developmentally-based approach to the clients in question (Vonk & Hosmar, 2009). The SEO-Lukas-Version (Barrett & Kolb, 2013) is also based on the SAED. Conceived specifically for use in clinical practice in adults with ID, it retains the SAED’s ten domains and aims to include adult-appropriate items only. It is available online in German and English (SEO-Lukas-ENG; Barrett & Kolb, 2015). Some scales, such as the FEAS, ITSEA, and ESSEON-R, were primarily designed for children and adolescents and not specifically for individuals with ID (Carter & Briggs-Gowan, 2000; Greenspan et al., 2001; Hoekman et al., 2014). While the LEAS was chiefly meant for use with adults, it is also not geared to individuals with ID (Lane et al., 1990). The SAED and the revised versions SED-R and SED-R2 were specifically conceived for individuals with ID, but although they were not intended exclusively for use with children and adolescents, they retain a strong focus on this clientele. Some items describe behavior that is rarely observed in adults due to lifelong training, such as “Is afraid of the potty or the toilet.” Others deal with play activities typical for children, but less so for adults who are used to spending their days in sheltered workshops or engaging in other structured activities. Thus certain items may be difficult to apply in adults. Moreover, the increased number of domains in the SED-R/SED-R2 resulted in a time-consuming procedure, so that the scales took about two hours to complete. Finally, the SAED and its revisions cannot claim to be psychometrically sound enough for research purposes. Thus, despite their obvious benefits in clinical practice, the impact on a wider level is limited. The aim of this study was to devise a short, psychometrically sound scale for the assessment of emotional development in adults with ID that would complement existing tools and be suitable for diagnostic and scientific purposes. This paper introduces the new instrument, the Scale of Emotional Development – Short (SED-S), as well as presenting the results of the online survey and describing the cross-cultural, interdisciplinary consensus process used in developing it. 2. Materials and methods 2.1. Setting and design The study was initiated by the first author of this manuscript, who is affiliated with the Evangelisches Krankenhaus Königin Elisabeth Herzberge in Berlin, Germany. The project was conducted in collaboration with professionals in a number of other study sites experienced in applying the developmental approach: the St. Lukas-Klinik in Liebenau (Germany); the Faculty of Education, Health and Social Work at University College Ghent, the Department of Special Needs Education and the SEN-SEO project at Ghent University (Belgium); and Radboud University in Nijmegen, the Lunet zorg health center in Eindhoven, the Department of Clinical Child and Family Studies at VU University Amsterdam and Cordaan in Amsterdam, Bartiméus in Doorn, and De Twentse zorgcentra in Enschede (the Netherlands). A group of interested professionals from these institutions and services founded the ‘Network of Europeans on ED’ (NEED) with the aim of collaboratively devising an abbreviated version of the SED-R2 , and the SED-S was subsequently developed in a multi-stage process. The process contained following steps: (a) an online survey for pre-selecting items (b) a consensus meeting for dicussing the structure, application, and scoring of the new scale and defining rephrasing rules for the original SED-R2 items (c) a first multi-center rephrasing process, (d) a refinement of the rephrasing rules during a second consensus meeting and (e) a final rephrasing process. All taken steps are described in more detail below. The items developed in this manner were continually translated back and forth from Dutch into German and vice versa throughout the process, resulting in Dutch and German versions of the SED-S that were produced concurrently. In a final step, the German version of the SED-S was translated into English and the translation was independently double-checked by several bilingual experts on ED. 2.2. Instruments used as a basis for the SED-S: the SAED, SED-R and SED-R2 2.2.1. The SAED Anton Doˇsen (2005a,b) took the acquisition of emotional competencies over the course of the maturation process in typically developed children from birth to the age of twelve as his point of departure for this model. The SAED describes five stages of socio-emotional development – Adaptation (0–6 months), Socialization (6–18 months), Individuation (18–36 months), Identification (3–7 years) and Reality Awareness (7–12 years) – in ten different domains: (1) How the person deals with his/her own body, (2) Interaction with caregivers, (3) Experience of self, (4) Object permanence, (5) Anxieties, (6) Interaction with peers, (7) Handling of material objects, (8) Verbal communication, (9) Affect differentiation and (10) Aggression regulation. In a study based on the Italian version of the SAED and a sample of N = 33 clients with ID without co-occurring mental or behavioral disorders, La Malfa, Lassi, Bertelli, Albertini, and Dosen (2009) found a high internal consistency (Cronbach’s alpha = 0.958), substantial inter-rater reliability (kappa = 0.75) and a significant positive correlation (r = 0.657) between the average total scores obtained using the SAED and Vineland Adaptive Behavior Scales (VABS).

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2.2.2. The SED-R/SED-R2 The SED-R expanded on the original SAED by incorporating three additional domains: “Day Activity–Play Development,” ‘Moral Development’ and “Emotion Regulation” (Claes & Verduyn, 2012). The SED-R2 was developed (Morisse & Doˇsen, 2016) based on the SED-R considering clinical experience and reliability analysis in N = 67 cases (Vandevelde et al., 2016). The ED levels assigned by the interviewer in the individual domains provide the basis for an “overall” ED level. Calculated by ranking the domains according to their scores and counting up from that with the lowest score to the seventh in the list (Claes & Verduyn, 2012), the overall ED level is defined as equal to or no higher than the level assigned for the seventh-lowest-ranking domain (Vandevelde et al., 2016). A study conducted in Flanders (Belgium) with 67 clients with ID (both with and without co-occurring mental or behavioral disorders) showed a high internal consistency (Cronbach Alpha = 0.95) and substantial inter-rater reliability for overall scores (ICC = 0.73) obtained using the SED-R2 , although the coefficients for some domains were reported to be low (Vandevelde et al., 2016). Although the results obtained with the SED-R/SED-R2 are promising in regard to internal consistency, inter-rater reliability (especially in regard to the overall score) and convergent validity with the VABS, more research using different and larger samples is needed to corroborate these findings. 2.3. Online survey An online survey using the online survey software Qualtrics was conducted by University College Ghent in cooperation with Ghent University. The panel included both practitioners and academic researchers, all of whom had to meet the following criteria: (1) expert knowledge of developmental psychology and ED, (2) extensive diagnostic experience with individuals with intellectual disabilities, and (3) experience in administering the SAED, SED-R and/or SED-R2 . It was made up of six psychiatrists, eleven specialists with a background in special-needs education, eight psychologists, four professionals with a degree in psychology and education, and one music therapist. The participating experts rated the 556 items in the SED-R2 in terms of validity and observability by selecting one of four responses to the following two questions: (A) How suitable is the item as an indicator for the assigned level of development? very suitable (0); somewhat suitable (1); somewhat unsuitable (2); or clearly unsuitable (3). (B) How would you rate the item in terms of observability on a behavioral level? excellent (0); good (1); poor (2); or unacceptable (3). 2.4. Data analysis The responses given by the panel members in regard to validity and observability were analyzed by calculating the Means (M) and Standard Deviations (SD). First, the items for the respective domains were ranked by their mean scores for the first question (expert validity) and those ranking from one to six were retained. In a second step, the remaining items were ranked according to their scores for the second question (observability). The five items with the highest scores were then selected for inclusion in the SED-S to provide a broad base for the next step in the development of the instrument. When two domains were subsumed into one (c.f. Table 3), ranking was based on all items of the two domains. 2.5. Consensus meetings The members of the NEED group (see 2.1.) convened in Berlin in May 2015 in order to discuss the results obtained by the online survey and constitute the SED-S. The representatives of the participating institutions and services1 reviewed and discussed the purpose of the new scale, its structure (i.e. the number of items and domains to be included), how it was to be administered (i.e. in the form of a semi-structured, guided interview or as a questionnaire to be filled out by informants on their own), and how it was to be scored on the domain and overall levels. Particular attention was paid to the criteria to be applied in the rephrasing process (e.g. phrasing items as clearly and unambiguously as possible). The eight domains agreed upon were subsequently divided up among four groups (two in Germany, one in Belgium and one in the Netherlands). Each group was responsible for checking and rephrasing the items in the domains they had been assigned according to the rephrasing rules. The groups double-checked each other’s results in order to ensure multi-site consensus and cross-cultural intelligibility. In addition, some items were omitted (e.g. because they duplicated the content of items in other domains) and others were added (because some domains included only four items) on the basis of another round of ratings solicited from the participating experts, bringing the selection process another step closer to conclusion.

1 The participants included: Germany, Berlin: Melanie Adam, Thomas Bergmann, Miriam Franke, Isabell Gaul, Manuel Heinrich, Heika Kaiser, Peggy Rösner, Tanja Sappok, Marcus Vogel, Sabine Zepperitz; Germany, Liebenau: Brian Barrett, Jürgen Kolb, Christoph Sabellek; Belgium: Claudia Claes, Bea Jonckheere, Leen Poppe, Els Ronsse, Filip Morisse, Leen de Neve, Stijn Vandevelde, Dieter Windels; The Netherlands: Ester de Bruijn, Anton Doˇsen, Mieke Hoenderboom, Charlotte Mutsaerts, Paula Sterkenburg, Jolanda Vonk.

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Table 1 Validity and Observability Results for the Six SAED Items Scoring Best for Expert Validity (Domain One, Level 1). Code

Item

Expert Validity

Observability

D1F1.1

He is preoccupied with physical sensations and external stimuli (e.g. hunger, thirst, fatigue, pain). His duty is to preceive, realize, select and react to the various stimuli.

D1F1.3

Selection

M

SD

M

SD

1.35

0.49

2.00

0.73

retained

He feels safe and secure with familiar sounds, faces, smells, tastes etc. He enjoys skin contact.

1.50

0.63

1.57

0.57

retained

D1F1.6

He passively enjoys sensory stimuli.

1.53

0.68

1.72

0.65

retained

D1F1.4

He explores his body haphazardly by touching, grasping, sucking etc. various parts of it.

1.63

0.67

1.93

0.74

retained

D1F1.2

Initially he is prone to sensory overload and frequently becomes agitated or anxious when faced with overwhelming stimuli.

1.77

0.73

2.17

0.70

rejected

D1F1.9

May release pent-up tension in abrupt movements or engage with his body stereotypically (tics, flapping arms, screaming, hitting, rocking).

1.77

0.73

1.43

0.50

retained

The rephrasing rules were then refined further during a second consensus meeting in Florence in September 2015 and subsequently applied to the items in the scale. After the participating staff members at the four study sites had reviewed all items and cross-checked for items duplicated in different domains, the final item set was discussed and adjusted in a concluding consensus meeting held in Luxembourg in February 2016. 3. Results 3.1. The online survey The results of the Qualitrics Survey for Level 1 in Domain One have been provided as an example in the following Table 1. The mean scores in Domain One ranged from M = 1.35 for item D1F1.1 (“He is preoccupied with physical sensations and external stimuli.”) to M = 1.77 for items D1F1.2 (‘Initially he is prone to sensory overload and frequently becomes agitated or anxious when faced with overwhelming stimuli.”) and D1F1.9 (“May release pent-up tension in abrupt movements or engage with his body stereotypically (tics, flapping arms, screaming, hitting, rocking’). Then the observability ratings for the six items were evaluated in a second step, and the one with the lowest score was eliminated (in this case D1F1.2 with M = 2.17) while the others were retained for further refinement. See Appendix A for expert validity and observability ratings for all 556 SED-R2 items. 3.2. The consensus meetings 3.2.1. Purpose of the scale The SED-S was developed as an instrument for assessing the level of ED in individuals with ID. During the NEED meetings it became evident that diverging developments in the various centers have resulted in different understandings of the developmental approach (Ronsse, 2015), highlighting the need for a common instrument to eliminate inconsistencies and ambiguities and facilitate research. The design and scoring of the new scale should allow psychometric evaluation of objectivity, reliability, and validity in the future and aim to provide clear, unequivocal results. However, ED levels determined by the SED-S should always be understood as indicative of individuals’ level of emotional functioning in a specific environmental context rather than as static diagnostic labels. 3.2.2. Rephrasing rules The rephrasing rules included both general guidelines for developing items (avoid negations and ambiguity, use simple language, stick to the present tense and use gender-neutral terms), as well as a number of more specific rules. Some examples are provided in Table 2. 3.2.3. Structure of the SED-S In the interest of creating a more manageable instrument and reducing content overlap, a number of the thirteen domains included in the SED-R/SED-R2 were combined to produce eight domains in the new scale. See Table 3 for a depiction of the change in structure. With five binary items for each of the five ED levels in each of the eight domains, the SED-S includes a total of 200 items in all.

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Table 2 Rephrasing Rules with Selected Examples. Rephrasing Rule Applied

Item Before Rule was Applied

Item after Rule was Applied

Yes (typical)/No (not typical) response must be possible

D1F1.1: He is preoccupied with physical sensations and external stimuli (e.g. hunger, thirst, fatigue, pain). His duty is to preceive, realize, select and react to the various stimuli.

Emotional states are largely determined by basic physical sensations and needs (hunger, thirst, pain, fatigue, cold).

Each item should assess a single aspect of behavior;avoid using “and” and “or”

D1F1.9: Short, instantaneous physical discharges may occur or the dealing with the own body tends to be stereotypic (tics, flattering with arms, screaming, hitting, rocking).

Engages with his/her body by means of repetitive movements (flapping arms, rocking back and forth etc.) and vocalizations.

Only assess aspects that can be observed on a behavioral level

D1F4.6: Sense of shame starts to develop gradually.

Shows a sense of shame/modesty (closes the door when using the toilet, for example).

Use simple language

D3F4.3: He takes the initiative und makes decisions with growing awareness for the environment.

Makes decisions on his/her own and is aware of the immediate consequences (when crossing the street, for example).

Use unambiguous terms

D2F3.3: He is eager to assert his independence, yet at the same time is afraid of losing significant others.

Only obeys rules when authority figures are present.

Use terms appropriate for adults

D11F2.2: He reaches for toys in his environment

Reaches for things he/she can see or hear.

Find appropriate translations for key terms

• Caregiver (Engl.) = Betreuer (German) = begeleider (Dutch) • Significant other = Bezugsperson = belangrijke andere • Authority figure = Autoritätsperson = gezagsfiguur • Role model = Vorbild/Orientierungsperson = rolmodel • Peer = Peer = medecliënten

Table 3 Reorganization of SED-Domains. SED-R2 Domain 1 2 3 4 5 9 6 7 11 8 10 13 12

SED-Short Domain Dealing with own body Dealing with emotionally important others Self-image in interaction with the invironment Dealing with a changing environment – object permanence Anxieties Emotion Differentiation Dealing with peers Dealing with materials Day activity – play development Communication Aggression Regulation Emotion regulation Moral development

1 2

Relating to his/her own body Relating to significant others

3 4

Dealing with change – object permanence Differentiating emotions

5 6

Relating to peers Engaging with the Material World

7 8

Communicating with Others Regulating Affect

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3.2.4. Administering the scale Based on the assumption that an exploration of a client’s characteristic behavior guided by an expert for developmental psychology will produce the most valid information, it was decided that the SED-S should be administered in the form of semi-structured interviews conducted with at least two informants. The experts involved in the consensus process reached agreement that a guided assessment is essential if behavior observed in clients is to be interpreted correctly. To take account of the fact that behavior may vary in different contexts, interviews should preferably be conducted with informants from several different areas of the client’s life, (e.g. living, working, therapy, and family life). To ensure that information is reliable, they should be adequately familiar with the clients in question, i.e. they should have interacted with them regularly for at least three months in their daily environments or for at least two weeks in a clinical setting. Assessments made based on the structured interviews should reflect a consensus decision of the respective team of informants and a representative sample of the clients’ behavior in order to provide the best estimation of their level of emotional functioning at that particular time. 3.2.5. Scoring 3.2.5.1. Domain scoring. The level of ED with the highest number of items rated as ‘typical’ is assumed to provide the best estimation of the client’s level of ED in that particular domain. If two ED levels are rated with an equal number of items, the lower level is to be chosen as the point of reference. 3.2.5.2. Overall Scoring. A rank-based strategy is proposed for the estimation of the overall ED level, with the fourth lowestscore determining the overall level of ED. 3.2.5.3. Example for the overall scoring. Assuming the following results, Domain One: Level 1; Two: Level 1; Three: Level 2; Four: Level 2; Five: Level 1; Six: Level 3; Seven: Level 2; Eight: Level 2, the list of ranked ED levels obtained in the eight domains would be: 1, 1, 1, 2, 2, 2, 2, 3. The score that is the fourth lowest in the list is “2,” so the individual’s overall result is “Level 2.” 4. Discussion The SED-S was devised as a scale to assess the level of ED in adults with ID. It builds on the developmental-dynamic approach set out by Anton Doˇsen in the SAED (Doˇsen, 1990), a model based on normal development in infants and children according to which emotional competencies are acquired in a progressive sequence of qualitative changes incorporating emotional as well as social, sensorimotor and cognitive functions. With 200 binary items in all – five items for each level of ED – the SED-S provides a profile of ED levels over eight domains that can serve as the basis for estimating the client’s overall level of emotional functioning. Developed in a comprehensive consensus process in Dutch, German, and English on the basis of ratings by a cross-cultural panel of experts, the new scale is the result of a collaborative effort of specialists in several different fields and countries who have gained comprehensive clinical experience with the emotional developmental approach (Barrett & Kolb, 2013; Claes & Verduyn, 2012; Doˇsen, 1990; Sappok & Zepperitz, 2016; Vonk & Hosmar, 2009). A number of revised versions of the original SAED (Doˇsen, 1990) have emerged (Barrett & Kolb, 2013; Claes & Verduyn, 2012; Morisse & Doˇsen, 2016) within the past years. In the current collaborative effort we aimed to create an abbreviated, psychometrically sound scale for assessing ED in adults with ID suitable both for use in clinical practice and for research purposes. The assessment of emotional functioning is central to a better understanding of challenging behavior in individuals with ID (Doˇsen 2014; De Schipper & Schuengel, 2010; Sappok et al., 2014). Basic emotional needs are decisive for the motivation to display a certain behavior. Moreover, individual competencies such as communication, self-regulation, the ability to attribute mental states, object permanency, etc. vary greatly according to the level of emotional development and play a significant role in determining observable adaptive behavior (Baillargeon, 2004; Wimmer & Perner, 1983). Thus assessing the level of emotional development is crucial for a person-focused approach to understanding and dealing with challenging behavior. Adapting the environment and attuning sensitive caregivers to clients’ basic emotional needs may reduce challenging behavior and support clinicians to discontinue psychotropic medication for certain symptoms with questionable and limited effects (Brylewski & Duggan, 2000; Matson & Neal, 2009; Oliver-Africano, Murphy, & Tyrer, 2009; Tyrer et al., 2008). The developmental-dynamic approach distinguishes five levels of emotional development. However, emotional development is a continuous process with finely graded changes throughout a person’s entire lifetime, and other assessment instruments such as the ESSEON use much smaller subsections to emphasize the continuous aspect of socio-emotional development (Hoekman et al., 2014). Emotional development cannot be assessed like IQ. An individual’s current level of functioning depends on various intrinsic (e.g. psychiatric disorders) and external factors (e.g. major life events) and can even change over the course of a single day (Sappok & Zepperitz, 2016). Therefore the SED-S is based on a concept of emotional functioning that emphasizes the dynamic nature of changing emotional needs (c.f. Fig. 1), and its main focus lies on identifying individuals’ emotional needs rather than providing an exact assessment of their “level” of (socio-)emotional development.

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Fig. 1. Basic Emotional Needs According to the Dynamic-Developmental Model.

Certain basic emotional needs predominate at each stage of development (Maslow & Kruntorad, 1994). Although they may diminish during the further maturation of the individual, they do not disappear completely, and intra-individual or external factors such as a psychiatric disorder or major life event can cause needs characteristic of previous developmental levels to come back to the fore (Anda et al., 2006). The SED-S should be understood as a tool that can offer insight into the inner experience of individuals with ID and provide caregivers and others in their social network with a better understanding of adaptive and maladaptive behavior. It aims to support caregivers in creating environments and interactional settings that allow adults with ID to live up to their individual potential and lead fulfilled, meaningful lives (Sappok & Zepperitz, 2016). The method of administering the scale was chosen to take account of the contextual aspect of emotional functioning. Individuals’ level of functioning is highly dependent on their relationships with caregivers (Gilbert, 2015). Overprotective caregivers may elicit very different behavior and competencies than those emphasizing self-determination and individual responsibility. Thus it is impossible to regard ED in isolation from the very individual relationships clients have with their caregivers. Moreover, it is essential to take an individual’s biography, specific environment as well as other aspects of development into account when assessing ED in adults with ID. This complexity underscores the importance of taking a dynamic, interdisciplinary approach and the need for discussion among caregivers and professionals within teams. For these reasons, the SED-S should be administered in the form of a guided interview with members of a team of caregivers rather than as a simple questionnaire with behavior items for informants to check off. In the case of equal scores for two ED levels within a domain, the lower of the two should be assigned as the ED level for the respective domain. Overestimating individuals’ level of emotional functioning may overwhelm their adaptive capabilities and lead to maladaptive behavior. Taking a lower developmental level as a point of departure for planning pedagogical interventions may be more beneficial (Doˇsen, 2014; Sappok, Diefenbacher, Bergmann, Zepperitz, & Dosen, 2012). In case of uneven profiles of ED with different levels of ED in various domains, the utility of an ‘overall’ score may be questionable. For clinical communication and care planning, the ‘profile of ED’ may be the more appropriate way to meet the different aspects of personality and the hereby associated personal needs. A clear description of what may be rated as “uneven” or as an “even” level of ED needs to be assigned during the assessment process of this newly developed scale. The SED-S is targeted to adults with ID, and defining adult-appropriate items was a key issue in the rephrasing process. It aims to be more suitable for use with the target population than scales designed primarily for children and adolescents and not specifically for individuals with ID, such as the FEAS, ITSEA and ESSEON-R (Carter & Briggs-Gowan, 2000; Greenspan et al., 2001; Hoekman et al., 2014). Application of the SED-S in children and adolescents may be possible as well. Further evaluation within this age group is required. 4.1. Limitations The first limitation concerns the fairly small size of the panel of experts surveyed (n = 30). In addition, the fact that the panel was made up the clinicians and academic experts who were already familiar with the developmental-dynamic approach entails the risk of a certain bias and inter-subjectivity. In regard to the methodology used in determining the items and domains to be included, the experts involved in the process were not able to refer to any guidelines or preliminary research when deciding how many items should be used and which domains were most relevant. The statistical indicators used as the basis for selecting items (expert validity and observability) may also bear further discussion. A further limitation has to do with the fact that the project involved professionals from three different countries. Working in several languages

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during the consensus process made communication difficult at times. In addition, there may be certain cultural differences in the interpretation of ED levels, but this issue may be overcome once the instrument has been finalized in English. 5. Conclusions The aim of this project was to devise a standardized, psychometrically sound instrument for assessing the level of emotional development in adults with ID. Data acquisition was of particular significance in this undertaking since it was a cross-cultural collaborative effort involving experts from different professions in several European countries. With five items for each of five stages of development across eight domains, the newly designed Scale of Emotional Development – Short (SED-S) includes 200 items in all. As a cross-cultural instrument for assessing emotional development in adults with ID, it can help professionals identify clients’ basic emotional needs so they can attune their demands and therapeutic interventions accordingly and thus contribute to reducing challenging behavior. Acknowledgements We are indebted to the experts who participated in the Qualtrics survey, whose careful appraisals of the hundreds of items in the SED-R2 provided the data on the basis of which the items for the SED-S were selected. We would also like to thank all members of the NEED group, students and other participants who took part in the Berlin meeting in May 2015. Their critical and constructive contributions supported the authors in making careful decisions concerning the structure and form of the SED-S. Our gratitude also goes to the members of the staff at Königin-Elisabeth-Herzberge (KEH) Hospital in Berlin for their hospitality during the Berlin meeting. Furthermore, we would like to thank the bilingual collaborators (Dieter Windels; Susanne Möricke) who cross-checked the translations of the items during the various stages of rephrasing, especially Dieter Windels from the Department of Special Needs Education at Ghent University, who is fluent in Dutch and German and played a central role in the process. We are also grateful to Alexandra Barrett for the time and care she put into translating the scale into English and proofreading this manuscript. And last but not least, we would like to thank the clients at the KEH outpatient clinic and their families, who showed us how important it is to be respectful of emotions when working with one another. Appendix A. Supplementary data Supplementary data associated with http://dx.doi.org/10.1016/j.ridd.2016.08.019.

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