Family-centred care during midface advancement with a rigid external device: what do families need?
Midface advancement with distraction osteogenesis using the rigid external device (RED) is an effective but invasive treatment to correct the hypoplastic midface. This study draws up an inventory of the stressors, needs and coping strategies of families during this treatment, to determine the best conditions for family-centred care. Data were collected by reviewing the patients' files and administering semi-structured interviews. The data were analysed using the software program Atlas.ti and were re-analysed by an independent researcher. Parents and patients were interviewed separately. Fourteen families participated. Four patients had an absolute indication for surgery. All families were eager to have the patient's facial appearance improved. Nevertheless, despite psychological counselling, they experienced stress when confronted with the changed facial appearance. Another stressor was weight loss. Six patients were in a state of acute malnutrition and needed supplementary feeding. We conclude that the best conditions for family-centred care should be aligned to the different phases of treatment. Leading up to surgery it is important to screen families' expectations regarding aesthetic, functional and social outcomes and to assess their capacity to cope with the long treatment and effects of changed facial appearance. Peer contact and psychosocial training to increase self-esteem are tools to enhance co-operation and satisfaction. During the distraction and stabilisation phase, we advise the monitoring of nutritional intake and weight. During all phases of treatment easy accessibility to the team is recommended.
['Bredero-Boelhouwer|H|H|', 'Joosten|K F M|KF|', 'van Veen-van der Hoek|M|M|', 'Mathijssen|I M J|IM|']
D000223:Adaptation, Psychological D000293:Adolescent D000328:Adult D002648:Child D003376:Counseling D003394:Craniofacial Dysostosis D003657:Decision Making D004435:Eating D004954:Esthetics D016267:External Fixators D005190:Family D006801:Humans D019857:Osteogenesis, Distraction D010290:Parents D010353:Patient Education as Topic D017060:Patient Satisfaction D012189:Retrospective Studies D020377:Self Efficacy D058992:Social Participation D013997:Time Factors D015431:Weight Loss D055815:Young Adult
Midface Distraction osteogenesis Craniofacial surgery/psychology Craniosynostose syndromes Patient care team/nurse practitioners