Patient Support Groups are an Important Component of Your Toolbox for Patient Education

Abstract

The Pediatric Endocrinology Nursing Society (PENS) is committed to the development and advancement of nurses in the art and science of pediatric endocrinology nursing and to improve the care of all children with endocrine disorders through the education of the pediatric healthcare community. To aid in achieving that goal, the purpose of the PENS department is to provide up-to-date reviews of topics relevant to the PENS membership and to the general readership of the Journal of Pediatric Nursing.

Home administration of needle injections for children with rheumatic diseases: A qualitative study on nurses’ perception of their educational role

“…Our findings supported the recurring problem that evidence-based knowledge does not guide nurses' clinical practice Renolen et al, 2018). As means of empowering patients to improve self-management, nurse collaboration with user organizations or patient support groups may be untapped resources (Keil, 2019). The advantage of web-based solutions, employed in mobile health applications assisted by nurse-led teams, might also be successful in pediatric chronic disease management (Karataş et al;.…”

Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of Empower-DSD

“…Thus, modifications had to be made in terms of the inclusive language used, e.g., the word “diagnosis” is used instead of “disease” or the word “difference” instead of “disorder”. Here, the involvement of the patient support groups in the development of the trainings was a very valuable process [ 53 , 54 ]. Some of the patient support groups had difficulties with embedding the education programme in a medical system, while others did not.…”