The view of severely burned patients and healthcare professionals on the blind spots in the aftercare process: a qualitative study

BACKGROUND In most Western countries burn centres have been developed to provide acute and critical care for patients with severe burn injuries. Nowadays, those patients have a realistic chance of survival. However severe burn injuries do have a devastating effect on all aspects of a person's life. Therefore a well-organized and specialized aftercare system is needed to enable burn patients to live with a major bodily change. The aim of this study is to identify the problems and unmet care needs of patients with severe burn injuries throughout the aftercare process, both from patient and health care professional perspectives in Belgium. METHODS By means of face-to-face interviews (n = 40) with individual patients, responsible physicians and patient organizations, current experiences with the aftercare process were explored. Additionally, allied healthcare professionals (n = 17) were interviewed in focus groups. RESULTS Belgian burn patients indicate they would benefit from a more integrated aftercare process. Quality of care is often not structurally embedded, but depends on the good intentions of local health professionals. Most burn centres do not have a written discharge protocol including an individual patient-centred care plan, accessible to all caregivers involved. Patients reported discontinuity of care: nurses working at general wards or rehabilitation units are not specifically trained for burn injuries, which sometimes leads to mistakes or contradictory information transmission. Also professionals providing home care are often not trained for the care of burn injuries. Some have to be instructed by the patient, others go to the burn centre to learn the right skills. Finally, patients themselves underestimate the chronic character of burn injuries, especially at the beginning of the care process. CONCLUSIONS The variability in aftercare processes and structures, as well as the failure to implement locally developed best-practices on a wider scale emphasize the need for a comprehensive network, which can initiate transversal activities such as the development of discharge protocols, common guidelines, and quality criteria.