Implementing a program for parents with intellectual disability: Peer support as an interactive support system

Abstract: There is growing focus on equal rights and inclusion for individuals with intellectual disability (ID), including the right to have children (Article 23 of the UNCRPD). Implementation of appropriate, research-based practices is therefore integral to supporting these parents. The current thesis examined implementation of an evidence-informed parent education program for parents with ID in Sweden, called Parenting Young Children (PYC). The overall aim of the empirical studies was to investigate the Swedish Implementation Support Model (SweISM), designed for assisting implementation of PYC in Sweden. As part of the SweISM, particular focus was placed on the use of peer support groups, a method which there is currently little knowledge of in the implementation context. The studies aimed to examine how the SweISM works in practice, to identify limitations and opportunities, and to investigate interactions between the support and delivery system. A predominantly inductive, qualitative approach was used. Study I explored perceptions of competence development and the training process in Swedish program users (support workers) who attended PYC training in 2010 and participated in monthly peer support groups. Five focus groups discussed experiences of PYC on two occasions; after initial training, and one year later. Twelve of these support workers also completed a competency questionnaire after training, and one year later. Overall, perceived competence was high and increased over time, with greatest perceived skill improvement in developing and individualizing interventions to strengthen parents’ ability to learn. Peer support groups were thought to be beneficial for performance evaluation, exchange of information and coping with problems. Using PYC with parents, rather than indirect training, was perceived to be critical in gaining confidence and refining skills. However, accessing the target group to practice skills was thought to be difficult. Study II explored peer support groups in greater depth by investigating peer group facilitators’ (Area Coordinators) experiences and perceptions of working in the groups, their perceptions of group structure and content, and development of groups over time. Between 2012-2013, PYC support workers and Area Coordinators attended monthly peer support groups. Five Area Coordinators completed forms each month after meetings, over a mean period of 11 months. The forms recorded topics covered, difficulties experienced by the group and general reflections about meetings (15 peer groups, 160 meetings in total). Four of these facilitators attended a focus group about experiences of facilitating meetings and interacting with organizations. Results showed that Area Coordinators perceived several opportunities and barriers to program implementation within the groups. Interaction between the peer support groups and the organization was thought to be particularly important, but difficult to achieve. Opportunities to develop Area Coordinators’ training and strengthen interaction between peer groups, Area Coordinators and organizations are discussed.