‘You are Okay’: a support and educational program for children with mild intellectual disability and their parents with a mental illness: study protocol of a quasi-experimental design

Abstract

BackgroundChildren of parents with a mental illness or substance use disorder (COPMI) have an increased risk of developing social-emotional problems themselves. Fear of stigmatisation or unawareness of problems prevents children and parents from understanding each other. Little is known about COPMI with mild intellectual disabilities (ID), except that they have a high risk of developing social-emotional problems and require additional support. In this study, we introduce a program for this group, the effectiveness of which we will study using a quasi-experimental design based on matching. The program ‘You are okay’ consists of a support group for children and an online educational program for parents. The goal of the program is to increase children and parents’ perceived competence with an aim to prevent social-emotional problems in children.Methods/DesignChildren between ten and twenty years old with mild ID (IQ between 50 and 85) and at least one of their parents with a mental illness will be included in the study. The children will receive part time treatment or residential care from an institute for children with mild ID and behavioural problems. Participants will be assigned to the intervention or the control group. The study has a quasi-experimental design. The children in the intervention group will join a support group, and their parents will be offered an online educational program. Children in the control group will receive care as usual, and their parents will have no extra offer. Assessments will be conducted at baseline, post-test, and follow up (6 months). Children, parents, and social workers will fill out the questionnaires.DiscussionThe ‘You are okay’ program is expected to increase children and parents’ perceived competence, which can prevent (further) social-emotional problem development. Because the mental illness of parents can be related to the behavioural problems of their children, it is important that children and parents understand each other. When talking about the mental illness of parents becomes standard in children’s treatment, stigmatisation and the fear for stigmatisation can decrease.Trial registrationDutch Trial Register NTR4845. Registered 9 October 2014.Electronic supplementary materialThe online version of this article (doi:10.1186/s12888-015-0698-0) contains supplementary material, which is available to authorized users.

‘You are Okay’: Effects of a support and educational program for children with mild intellectual disability and their parents with mental health concerns

“…Based on our theoretical model (Riemersma et al, 2015), we expected the program to affect children’s perceived competence, children’s COPMI-specific cognitions, children and parents’ perceived social support, perceived parental competence, parental involvement with their child’s treatment and positive parenting behaviour. Our study did not support this for the following possible reasons.…”

“…The Medical Research Ethics Committee (Independent Review Board Nijmegen) approved the study protocol (NL49448.072.14). The study protocol was registered at the Dutch Trial Register (NTR4845, Riemersma et al, 2015).…”

“…Second, we assessed the intermediate outcomes of the intervention: children's perceived competence; children's COPMI-specific cognitions; children's and parents' perceived social support; perceived parental competence; parental involvement with their child's treatment; and positive parenting behaviour. We expected that children and parents in the intervention group would report improvements on the intermediate outcomes compared to children and their parents in the control group (Riemersma et al, 2015). According to Van Santvoort et al (2013), these intermediate outcomes are considered changeable risk and protective factors that are supposed to contribute to the emotional and behavioural development of children.…”

“…For the particularly high-risk group of children with mild intellectual disabilities and their parents with mental health concerns, no (preventive) intervention was available up till now. The current study assessed the effectiveness of the program ‘You are Okay’ designed particularly for children with mild intellectual disabilities receiving treatment for emotional and behavioural problems and their parents with mental health concerns (Riemersma et al, 2015; Riemersma and Van Santvoort, 2014). Since many children with mild intellectual disabilities have emotional and/or behavioural problems themselves and already receive treatment (‘care as usual’), this program is considered as an additional competence training instead of an exclusively prevention-oriented intervention, such as in the case of support groups for children with average intelligence.…”

“…The theoretical model underlying the program, as shown in Figure 2, was based on empirical knowledge about changeable risk and protective factors, and working mechanisms of interventions for children of parents with mental health concerns (Riemersma et al, 2015). Psychosocial risk and protective factors that are often addressed in these child and parent interventions are: skills to search and ask for social support; self-esteem and negative cognitions (e.g.…”