Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES)

The increase of people living with chronic conditions has compelled society to develop and implement strategies that promote collaboration between patients and healthcare professionals, and which provide the patients with an active role in their care. In order to accomplish this, the World Health Organization, amongst others, has advocated including patient empowerment in healthcare policy development. Patient empowerment is a concept that stems from social sciences. When it was introduced in healthcare, the aim of enhancing patient empowerment was to increase patients’ autonomy and participation in care. In the literature, several definitions and attributes of empowerment are described. Some authors considered it to be: “the capacity individuals have to become responsible for their own health”; “a complex process of change guided by self-determination”; or “a social process where the patients’ abilities to feel in control of their own lives are enhanced”. Even though there are several definitions of empowerment, some of them are not theoretically grounded, or the distinction with other concepts (i.e. self-management) is unclear. Important theoretical developments and empirical underpinnings have been made by Small and co-workers. They defined empowerment as “an enabling process or outcome arising from communication with the health care professional and a mutual sharing of resources over information relating to illness, which enhances the patients’ feelings of control, self-efficacy, coping abilities and ability to achieve change over their condition”. Based on qualitative research they also developed a conceptual model proposing that empowerment comprises five dimensions: 1) identity; 2) knowledge and understanding; 3) personal control; 4) shared-decision making; and 5) enabling others (i.e. peers with similar conditions). A particular group of patients with chronic conditions are young persons with childhood-onset diseases. Patient empowerment is highly relevant in this group because through patient empowerment, young persons with chronic conditions can develop psychosocial skills (e.g. goal-setting, stress management, problem-solving), actively participate in care, and become aware of the need to remain in follow-up. Interventions aiming at increasing the level of patient empowerment have been found to result in improvements in quality of life and well-being, better pain management, and increased knowledge of one’s disease. On the longer term, clinical outcomes are considered to be better when patient empowerment is enhanced. To date, there is no universally accepted measure of assessing patient empowerment. A recent literature review identified 19 existing instruments. The problem with most instruments is that they are of low quality, and reliability and validity have not been reported. Moreover, there is no instrument suitable for use in young persons with chronic conditions. For this purpose the Gothenburg Young Persons Empowerment Scale (GYPES) was developed. The aim of the present article is to describe the development of the GYPES and report on consecutive studies in which we evaluated the psychometric properties