Development and evaluation of a "HeartBeat" adolescet transition psychoeducational program on self-management for adolescents with congenital heart defects

Abstract

The purpose of the thesis is to develop and evaluate a “HeartBEAT” Adolescent Transition Psychoeducational Program (ATPP) to facilitate self-management skills of adolescents with Congenital Heart Defects (CHD). Based on this purpose of the study, three specific objectives were formed as below: (1) to explore and identify the needs of adolescents with CHD; (2) to design the contents of the “HeartBEAT” Adolescent Transition Psychoeducational Program; and (3) to evaluate the short-term impact of the Adolescent Transition Psychoeducational Program. The program’s development and evaluation is formative in nature. To achieve these research objectives, the research methods follow Maher’s program evaluation framework (2012) as its research framework. Research objective one applied qualitative study, interviewed seven adolescents with CHD, six parents and four health care providers. Five main themes of adolescents’ experience and challenges related to (1) emotional/ psychological issues, (2) progress of illness, (3) relationship issues, (4) future preparation, and (5) school and community, were identified. The findings of research objective two outlined the conceptual framework derived from a shared management model (2000) and Antonovsky’s salutogenic model (1987). Program descriptions were done based on the outline of Frechtling (2007)’s logic model, including goals, rationale, resources, activities and etc. Training manual was formed to ensure the standardization of the practices, and three experts in healthcare sector and psychology field reviewed these documents. The results of specific research objective three are comprised of the findings of both impact and process evaluations. Fourteen participants were recruited, but only eight were able to complete the program. Looking at the short-term impact of the ATPP, the program had significantly increase self-management knowledge, affectionate support, emotional regulation skills and capacity to identify their life plan. However, their selfmanagement skills were not significantly increased, which might be due to overprotection of the parents and communication issues in healthcare. On the process of protocol evaluation, four mental health professionals were able to conduct the “HeartBEAT” ATPP more than 90% based on Strategy and Information Checklists. In addition, they have also shared on the challenges in implementing online support groups in the ATPP. Two main themes have emerged, which are the challenges related to participants and challenges related to the usage of technology. These results demonstrate the success of the “HeartBEAT” ATPP in achieving the objectives of this study. The limitations of the study are small sample size, high attrition rate and does not involve participants during qualitative analysis methods. The implications of the study demonstrate the success of the ATPP in achieving the objectives of this study, and the program is affordable, accessible and available.