Implementing a program for parents with intellectual disability in Sweden: A feasibility study

Abstract: This thesis examines implementation of an evidence-informed parent education program for parents with intellectual disability, called Parenting Young Children (PYC), in the Swedish social services. The empirical studies on which the thesis is based aimed to evaluate how feasible and successful implementation of PYC has been to date, examining program fidelity, and the provision of program support. Study I explored perceptions of competence development and the training process for Swedish program users (support workers) who participated in monthly peer support groups. Focus groups discussed experiences of PYC and completed a competency questionnaire on two occasions. Perceived competence was high and increased over time. PYC peer support groups were thought to be beneficial for performance evaluation, exchange of information and coping with problems. However, many reported few opportunities to implement the program. Study II investigated peer group facilitators’ (Area Coordinators) perceptions of working in peer support groups. Area Coordinators completed diaries each month after meetings, recording topics covered, difficulties experienced by the group and general reflections about peer support. Area Coordinators also attended a focus group. Several opportunities and barriers to program implementation were perceived within the groups. Interaction between the peer support groups and the organization/managers was thought to be particularly important, but difficult to achieve. In Study III fidelity was examined by tracking frequency of implementation of program activities and teaching approaches in support workers. Feasibility was explored through questionnaires addressing perceived program complexity and compatibility in support workers and their managers. Implementation of PYC was reported to be highly feasible, with overall positive attitudes to Evidence-Based Practice, good program compatibility and low perceived program complexity, as well as high satisfaction with implementation support. However, some behavioural aspects of PYC were rarely reported to be used in practice. Low implementation intensity was also reported. Study IV aimed to develop a PYC fidelity measure that included the perspective of program recipients. Two questionnaires were developed; one measured parents’ perceptions of support workers’ fidelity, the other was a self-report questionnaire for support workers. Items from the support worker and parent versions were compared for inter-rater reliability. Parents and support workers both reported very high fidelity. Scores were consistent over a three month period. Inter-rater reliability between parents and support workers was, however, only fair. Taken together, these results highlight enthusiasm and perceived need for PYC in the social services. Further work is needed in order to assist implementation of PYC and to develop both the program itself and program support.