Effects of a self‐management training for people with intellectual disabilities

Abstract Background To help people with intellectual disabilities lead a more independent life, it is important to promote their self‐management. This study evaluated the effectiveness of a self‐management training for people with intellectual disabilities directed at independent functioning in daily life. Method In the training, 17 people with intellectual disabilities worked on personal self‐management goals covering a wide range of everyday affairs. Primary outcome measures focused on goal attainment, independence and support needs. Moreover, outcomes regarding psychopathological behaviour and quality of life were explored. Data were collected before and at the start of the training, and 3, 6, 9 and 12 months later. Results The training contributed to the attainment of self‐management goals and to the reduction in support needs (p < 0.01). There were no changes in independence, psychopathological behaviour and quality of life. Conclusions Results indicate that the training supports people with intellectual disabilities to self‐manage their daily affairs.


| 391
Published for the British Institute of Learning Disabilities SANDJOJO et Al. et al., 2017). Therefore, interventions are required that promote selfmanagement of people with intellectual disabilities.
Self-management is an overarching term involving all cognitions and actions of a person that deliberately influence his or her behaviour in order to realize self-selected outcomes (Browder & Shapiro, 1985). Self-management thus includes the autonomy to self-determine one's choices to lead one's life according to one's own preferences (Tonkens & Weijers, 1999;Wehmeyer & Abery, 2013;Wehmeyer, Kelchner, & Richards, 1996). Furthermore, selfmanagement involves independence and self-reliance, which encompass the abilities to take actions to manage one's affairs and to provide for oneself, thereby relying on one's own efforts, resources, judgement and abilities (Sandjojo et al., 2018).
Various studies on promoting self-management in people with intellectual disabilities have been conducted. However, most of these studies have included only a very small sample and have investigated only one type of approach (e.g., self-instruction) or a singular domain (e.g., grocery shopping). To our best knowledge, none of the investigated interventions were generalized to a wider range of people with intellectual disabilities with different self-management goals. Previous research focused, for example, on prompting (Bouck, Satsangi, & Bartlett, 2017;Dollar et al., 2012;Wu, Wheaton, & Cannella-Malone, 2016), the use of technology (Cannella-Malone et al., 2006;Cavkaytar, Acungil, & Tomris, 2017;Cullen, Alber-Morgan, Simmons-Reed, & Izzo, 2017;Douglas, Ayres, & Langone, 2015;Ramdoss et al., 2012), employment (Gilson, Carter, & Biggs, 2017;Gomes-Machado, Santos, Schoen, & Chiari, 2016) or health behaviour (Taggart et al., 2015;Wilson & Goodman, 2011). Most studies presented promising results, but drawing firm conclusions about the effects of self-management interventions is difficult due to studies' narrow focus and methodological limitations. However, previous studies emphasized that overall, it is important that interventions are (a) tailored to the needs and personal situations of people with intellectual disabilities (Douglas et al., 2015;Goldschmidt & Song, 2017;Hale, Trip, Whitehead, & Conder, 2011;Kuijken et al., 2016;Young, Naji, & Kroll, 2012), (b) that their support network is involved (Hale et al., 2011;Young et al., 2012) and (c) that attention is paid to the transfer of learnt skills to daily life (Gilson et al., 2017;Goldschmidt & Song, 2017).
In this study, for the first time the Academy of Independence (AoI) was evaluated, which is a self-management training for people with intellectual disabilities that incorporates the above-mentioned three important elements. This training is tailored to an individual's personal self-management goal (PSMG) and to their preferences regarding how they would like to work on this PSMG and is not limited to a singular domain, or a specific strategy or approach. Participants determine themselves which goal(s) within the domain of self-management they want to train, which can concern a daily living skill, but also, for example, dealing with emotions or social situations. This intrinsic motivation can benefit their personal growth (Ryan & Deci, 2000). The training also takes individuals' abilities and disabilities into account, actively involves the support network and fosters the transfer to daily life. The primary purpose of this study was to investigate whether this self-management training would support people with intellectual disabilities to reach their PSMGs and whether it would increase their independence and reduce their support needs. Furthermore, the present authors explored whether the training would reduce psychopathological behaviour and enhance quality of life.

| Procedure
The Medical Ethics Committee of the Leiden University Medical Center declared that neither formal medical ethical approval nor written informed consent was necessary. Participants were recruited at Raamwerk, a care organization that provides housing and day care services to people with intellectual disabilities in Noordwijkerhout, the Netherlands. Staff of Raamwerk asked their clients if they wanted to take part in the self-management training. If a client and his or her legal representative agreed on taking part, they received a letter which explained the study and informed them that data would be handled anonymously. If someone would have objected to participate in the study, that participant would have been excluded from the data collection, but not from the training. However, this did not occur. Data were collected 6 months before the start of the training (T0), at the start of the training (T1), and 3, 6, 9 and 12 months later (T2-T5). Before the start of the training (i.e., in the 6 months between T0 and T1), participants received care as usual.

| Participants
Participants had to be adults (≥18 years) diagnosed with intellectual disabilities, and they at least had to be able to focus on the instructions and exercises during the training. The latter was based on the clinical judgement of someone's support staff. If someone's personal situation would significantly interfere with following the training (e.g., due to severe psychiatric problems), that person was not eligible for participation. There was no minimal level of cognitive functioning required (e.g., regarding language skills or intelligence level).

| Training
The self-management training is developed and described in greater detail by the Academy of Independence (Academie voor Zelfstandigheid, 2015). The aim of the AoI is to promote independent functioning of people with intellectual disabilities and to enable their equal participation in society. Its approach is founded on the methodology "On Your Own Two Feet" (Sandjojo et al., 2018;Scholten & Schuurman, 2008). The AoI's core values encompass a positive and respectful approach, effective learning, nourishment of self-worth and creating a sense of responsibility in its trainees. The AoI specifically focuses on the abilities and talents of people with intellectual disabilities, instead of their disabilities. AoI trainers encourage and coach people with intellectual disabilities to think and handle things themselves, instead of taking over from them, thereby facilitating their development and sense of responsibility.
The training was implemented within day care services.
Experienced support staff received a 3-day training to become AoI trainers. On average, there were two trainers guiding four participants. At the start of each participant's training, trainers used motivational interviewing techniques (Miller, 1996)  Some participants were able to do this independently, but if a participant could not read or write or reported to have difficulties with this reflection, the trainer helped the participant to fill in the form. In both cases, this self-evaluation was discussed with the trainer, who also provided feedback. To foster the transfer of learnt skills to daily life, trainers also practised with participants at their home or work locations or in the community. Participants also took their training material home so they could practise in their everyday environment.
Trainers also held close contact with involved family members and support staff to ensure that the support network also knew what they could practice with them. Once a participant reached a PSMG and finished the training module, he or she received a certificate and was given the option to start with a new PSMG directed at a different skill or to leave the training. up to €10). The GAS was scored every 3 months (T1-T5) by evaluating with AoI trainers, participants and sometimes support staff from group homes and day care which GAS level was attained by the participant at that point in time. As the levels were specified beforehand, this could be done easily and objectively.

| Data collection and outcome measures
Participants could start with a new PSMG once they attained their previous PSMG (with a GAS score of 0 or higher). The mean raw GAS score was used for the statistical analyses. In addition, learning curves were analysed visually.

| Independence in general
The Social Functioning Scale for the Mentally Retarded-Plus (SFSMR-P; Kraijer & Kema, 2004) consists of 63 items addressing several components of independent functioning at home, at work and in social situations. The personal tutors filled in whether a participant currently performed these activities independently (score of 1) or not (score of 0). The mean item score was used for the analyses. The SFSMR-P is widely used in Dutch care organizations for people with intellectual disabilities, and both the reliability and construct and criterion validity were found to be good (Evers, van Vliet-Mulder, & Groot, 2000).

| Independence at home and in the community
The level of independence at home and in the community was assessed with INVRA-Home (Douma, Mulder, & Scholten, 2001b). This questionnaire is developed for the field of intellectual disabilities and lists 114 abilities and skills belonging to several aspects of independence: personal care and health, household competence, cognitive competence, societal competence and social interaction. The personal tutor from the residential facility scored whether the participant performed the activities: (a) independently, (b) on his or her own initiative, (c) for the most part and (d) in an acceptable manner. Per item, a score from 0 to 4 could be obtained. The sum of all item scores was used for the analyses. The inter-rater reliability was found to be substantial, and the internal consistency is high (Douma et al., 2001b).

| Independence at work
The INVRA-Work questionnaire (Douma, Mulder, & Scholten, 2001a) is developed for people with intellectual disabilities to assess independence at work. It contains 38 items covering three domains: performance at work, motor competence and attitude at work. For each item, a score from 0 to 3 could be given which reflects to what extent something was performed independently, on the participant's own initiative, and in an acceptable manner. The sum of the three scales was used for the analyses. INVRA-Work has a moderate inter-rater reliability and a high internal consistency (Douma et al., 2001a).

| Psychopathological behaviour
The Adult Behavior Checklist (ABCL; Achenbach & Rescorla, 2003) was filled in by the participant's personal tutors to assess the occurrence of emotional and behavioural problems. In this questionnaire, 118 items are rated on a three-point scale, indicating the frequency of occurrence of a particular type of behaviour (0 = not at all, 1 = a little or sometimes and 2 = clearly or often). Items can be divided into eight syndrome scales: anxious/depressed, withdrawn, somatic complaints, Thought problems, Attention Problems, Aggressive Behaviour, Rule-breaking behaviour and Intrusive behaviour. The first three syndrome scales form the Internalising Scale, and the latter three comprise the Externalising Scale. The total problem score consists of the sum of all 118 items. The mean scores for all scales were used for the analyses. The ABCL has shown to be a reliable and valid instrument to assess psychopathology in people with intellectual disabilities (Tenneij & Koot, 2007).

| Statistical analyses
All data were analysed with IBM Statistical Package for the Social Sciences version 23.0. Descriptive statistics were used to summarize the scores of the participants on the various questionnaires.
The scores of the questionnaires used for the analyses were normally distributed (z-scores of skewness and kurtosis |<3.0|). No outliers (>3 SD) were found.
For the questionnaires, multilevel analyses were conducted to examine possible changes in participants' functioning over time. In the first model, only a random intercept was included, and then the overall effect of time on the outcome measures was added as a linear effect. Next, in the final multilevel model, the present authors again used a random intercept and the separate measurement points were added as fixed factors. In this model, T1 (the start of participants' AoI training) was used as a reference point, with which the scores on T0 and T2-T5 were compared. This enabled the analyses of whether any changes in functioning already occurred before the start of the training, as well as whether scores improved over time once the training had started. By using multilevel analyses and by collecting data at six different measurement points for each participant, the statistical analyses were less vulnerable to the limitations of a small sample size.

| RE SULTS
For all outcome measures, descriptive statistics per measurement point are presented in Table 2.  the first 3 months. Initial achievements were generally maintained and additional improvements were continued to be made over time, both regarding the initial PSMGs and in some cases also regarding new PSMGs. Of the 52 PSMGs that were set in total, 26 PSMGs (50%) were attained by 13 participants taken together (level 0). For 13 of these 26 attained PSMGs (25% of the total), participants even exceeded the goal they had set (level +1 or +2). Regarding the 26

| Attainment of personal self-management goals
PSMGs that were not attained by 13 of the participants, mostly small improvements were nevertheless made (level −1). Only for four PSMGs no improvement occurred (level −2). However, in these cases the four corresponding participants attained at least one other PSMG. Furthermore, in three of these cases, participants started with this PSMG at a later stage (around T2, T3 or T4). One participant relapsed in a previously attained PSMG, although in the meantime she progressed in three other PSMGs.

| Questionnaires
In the multilevel analyses of the various questionnaires, effects of age and gender were also explored, but no interaction effects were found with the various measurement points on any of the questionnaires (all p-values >0.05).

| Independence
The analysis of the SFSMR-P data showed that there was no difference in the level of independence between T0 and T1. Furthermore, there were no differences between T2 and T5 compared to T1 (all p-values > 0.05), indicating that the level of independence did not change once participants started with the training. Similar results were found for INVRA-Home and INVRA-Work.

| Support needs
Participants' support needs did not differ between T0 and T1.
However, participants had significantly lower support needs at the following measurement points of the SIS, that is, T3 (p < 0.01, d = 0.57) and T5 (p < 0.01, d = 0.55) compared to T1 (Table 3).

| Psychopathological behaviour
The analysis of the ABCL Total Problems Scale revealed no significant differences in the occurrence of psychopathological behaviour when T0 was compared to T1, as well as when T2-T5 were compared to T1 (all p-values > 0.05). Similar results were found when the Internalising and Externalising Scale were analysed separately.

| Quality of life
There were no changes in quality of life, as measured by the WHOQOL-5-DIS. When comparing the scores at T0 to those at T1 and when comparing T2-T5 to T1, no significant differences were found (all p-values > 0.05).

| Principal findings
This study's findings support a lifelong learning for people with intellectual disabilities. Significant improvements were observed in the attainment of PSMGs already within the first 3 months after the start of the training, and more improvements were continued to be made during the following months.

TA B L E 3
Results of the longitudinal multilevel analysis of SIS scores with T1 as the reference point F I G U R E 1 Goal attainment Scaling scores for each personal self-management goal (PSMG) per measurement point (T1-T5). Level 2: Participant has attained much more than the PSMG; Level 1: Participant has attained more than the PSMG; Level 0: Participant has attained the PSMG; Level −1: Participant has made progress, but not enough to attain the PSMG; Level −2: Participant's initial level before working on the PSMG improvements were nonetheless made. Although the PSMGs were often very specific, reaching these goals can be of great personal significance to an individual. Learning to cycle to work or learning to use the Internet, as was the case for some of our participants, can greatly contribute to one's community participation (e.g., Chadwick, Quinn, & Fullwood, 2017;Wright & Wolery, 2011). The training's effectivity was further supported by the finding that participants' support needs significantly decreased once they started with the training. Elements of the training's approach, that is, tailoring to the individual, involving the support network and assisting the transfer of learnt skills to daily life, seem to benefit people with intellectual disabilities. This has already been suggested in previous research (Cavkaytar et al., 2017;Douglas et al., 2015;Gilson et al., 2017;Goldschmidt & Song, 2017;Hale et al., 2011;Kuijken et al., 2016;Young et al., 2012); however, our study for the first time evaluated a self-management training in which all these elements were combined and which showed that this is a promising approach. to daily life should also be facilitated, by ensuring that family and support staff are actively involved.

| CON CLUS IONS
To our best knowledge, this is the first study to report on a selfmanagement training for people with intellectual disabilities that is broadly applicable and adaptable to people's different goals, abilities and preferences regarding their way of training for their goals. The training was found to contribute to the attainment of PSMGs and to the reduction in support needs once participants started the training. This promising result justifies continued research on its implementation and further evaluation of the training's effects on specific subgroups of people intellectual disabilities to study who benefits most from the training. Further research and implementation may not only positively influence the lives of people with intellectual disabilities by helping them manage their affairs more independently, but may also reduce the burden on family and support staff because of participants' decreased support needs.

ACK N OWLED G M ENTS
The present authors thank all study participants and staff members of Raamwerk and the Academy of Independence who contributed to