PURPOSE: To gain insight into the development of young persons with chronic conditions towards independence by comparing their lived experiences to those of their parents. METHODS: Semi-structured interviews were held with 16 young persons (7 males, 9 females; 15-22 years) and one of their parents …

Background The Six-Minute Walk Test (6MWT) is increasingly being used as a functional outcome measure for chronic pediatric conditions. Knowledge about its measurement properties is needed to determine whether it is an appropriate test to use. Purpose The purpose of this study was to systematically …

Thirty years ago, in the summer of 1982, I was introduced to pediatric nursing during my internship in the Sophia Children’s Hospital, Academic Hospital Rotterdam (now Erasmus MC). One of my unforgettable patients was Dirk, a 24-year-old man with cystic fibrosis (CF), who spent his time in hospital in …

Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore …

Chronic conditions can lead to considerable deterioration in functioning. Several condition-specific Core Sets, selections of categories from the International Classification of Functioning, Disability and Health (ICF), have been developed to facilitate the rehabilitation process. Considering the increase …

The objective of the present study was to examine the attentional demands of gait adaptations required to walk over irregular terrain in community-dwelling people with chronic stroke. Eight community ambulators (>6 months post-stroke, aged 57 ± 15 years) and eight age-matched healthy controls participated …

Unraveling triadic communication in hospital consultations with adolescents with chronic conditions

As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for …

Background: Structured psychotherapy is recommended as the preferred treatment of personality disorders. A substantial group of patients, however, has no access to these therapies or does not benefit. For those patients who have no (longer) access to psychotherapy a Collaborative Care Program (CCP) …

This study evaluated the feasibility and appreciation of a new educational board game (SeCZ TaLK) that stimulates communication on sexuality and intimate relationships in youth with chronic conditions.