title: Family-centred care during midface advancement with a rigid external device: what do families need?
abstract: 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.
authors.affiliation: Department of Plastic and Reconstructive Surgery and Hand Surgery, Dutch Craniofacial Centre, Erasmus MC, Sophia Children's Hospital, Rotterdam, The Netherlands. H.Bredero-Boelhouwer@erasmusmc.nl
authors.forename: H
authors.initials: H
authors.lastname: Bredero-Boelhouwer
authors.forename: K F M
authors.initials: KF
authors.lastname: Joosten
authors.forename: M
authors.initials: M
authors.lastname: van Veen-van der Hoek
authors.forename: I M J
authors.initials: IM
authors.lastname: Mathijssen
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D003376:Counseling; D003394:Craniofacial Dysostosis / Q000523:psychology* / Q000601:surgery*; D003657:Decision Making; D004435:Eating; D004954:Esthetics / Q000523:psychology; D016267:External Fixators; D005190:Family / Q000523:psychology; D006801:Humans; D019857:Osteogenesis, Distraction / Q000009:adverse effects / Q000523:psychology*; D010290:Parents / Q000523:psychology*; 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
keywords: Craniofacial surgery/psychology; Craniosynostose syndromes; Distraction osteogenesis; Midface; Patient care team/nurse practitioners