Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified.
CONCLUSIONS: There is a need to improve the family-centeredness of care when dysmelia is identified. Offering signposting information to relevant third-sector organisations may increase parent satisfaction and address parent preferences. These findings could have implications for parents of children with other rare diseases identified in maternity services.
PMID: 27156021 [PubMed - as supplied by publisher]
Source: Women Birth - Category: Midwifery Authors: Johnson J, Adams-Spink G, Arndt T, Wijeratne D, Heyhoe J, Taylor P Tags: Women Birth Source Type: research