Patient empowerment during the transition to adulthood in young persons with chronic conditions

People with congenital heart disease (ConHD) need lifelong follow-up care. In order to receive age- and developmentally appropriate care, they will be transfered to different care settings. The first of these transfers is from pediatric to adult care. During this transfer of care, patients experience different care cultures and face the challenges of moving from adolescent towards adulthood. It has been recommended to have a preparatory phase before this transfer of care. Transition is defined as the "process by which adolescents and young adults with chronic childhood illness are prepared to take charge of their lives and their health in adulthood" (1). These interventions are meant to maximize lifelong functioning and potential and assist the person in the transfer of care, but also in the transition to adulthood. In adult care and adulthood the person is expected to participate in care and have high self-management skills which can be achieved through patient empowerment. This concept is defined as "an enabling process or outcome arising from communication with the healthcare professional and mutual sharing of resources over information relating to illness, which enhances the patient's feelings of control, self-efficacy, coping abilities and ability to achieve change over their conditions"(2). The purpose of empowerment-based interventions is for the person to think critically and make informed decisions (3). In order to achieve patient empowerment, a person centered approach its necessary, since this perspective allows a higher involvement of the patient in care planning (4). Current evidence of the effectiveness of these interventions in adolescents with ConHD designed with a person centered approach and patient empowerment as primary outcome is non-existent. Hence, the overall aim of this PhD project is to develop and test a person-centered transition program for adolescents with ConHD to empower them to become active partners in their health and care. This PhD project is comprised by three studies: 1) A systematic review that will help determine the level of evidence of published literature on transfer and transition for young people with a chronic and/or congenital condition 2) A cross sectional study that will fulfill three secondary objectives: 2.1) determine the psychometric properties of Gothenburg Young Persons Empowerment Scale for its use in adolescents with ConHD; 2.2) to describe the level of empowerment; transition readiness; knowledge; health behaviors; perceived health status; illness perception; quality of life; and parenting style in afflicted adolescents and their parents; 2.3) and to explore correlates to adolescent's level of empowerment 3) An intervention study that will investigate the effectiveness of a structured person-centered transition program in improving patient empowerment in adolescents with ConHD 1. Meadows AK, Bosco V, Tong E, Fernandes S, Saidi A. Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease. Curr Cardiol Rep. 2009;11(4):291-7. 2. Small N, Bower P, Chew-Graham CA, Whalley D, Protheroe J. Patient empowerment in long-term conditions: development and preliminary testing of a new measure. BMC Health Serv Res. 2013;13:263. 3. Anderson RM, Funnell MM. Patient empowerment: Myths and misconceptions. Patient Educ Couns. 2010;79(3):277-82. 4. Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, et al. Person-centered care--ready for prime time. Eur J Cardiovasc Nurs. 2011;10(4):248-51.

Publication year:2021

Accessibility:Open