Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified. Issue 6 (December 2016)

• Record Type: Journal Article
• Authors: Johnson, Judith; Adams-Spink, Geoff; Arndt, Tobias; Wijeratne, Dileep; Heyhoe, Jane; Taylor, Peter
• Is Part Of: Women and birth. Volume 29:Issue 6(2016)
• Page Start: e99
• Page End: e104
• Publication Date: 2016-12
• Subjects: Family-centred care -- Prenatal care -- Maternity services -- Dysmelia -- Rare diseases; Midwives -- Periodicals; Pregnancy -- Periodicals; Midwifery -- Periodicals; Pregnancy -- Periodicals; 618.2
• DOI: 10.1016/j.wombi.2016.04.007
• Languages: English
• ISSNs: 1871-5192

Abstract

Abstract: Problem and background: Dysmelia is usually detected prenatally or postnatally in maternity services. The provision of family-centred care for parents at the time of initial diagnosis is crucial to facilitate decision making, access to appropriate services, and the provision of parental care-giving, but no research has investigated parent experiences or preferences in this population. Aims: The current research aimed to address this by investigating satisfaction with service, occurrence of signposting and preferences in this group. Methods: Two online surveys were conducted. In the first survey ( n = 417), parents reported whether they were offered signposting information and their level of satisfaction with the service they received when initially diagnosed. In the second survey ( n = 130), a subgroup of participants who completed the first survey reported their preferences for signposting and health service access after diagnosis. Findings: On average, participants were less than satisfied with the service they received and only 27% were offered signposting information. Satisfaction was higher amongst parents who had been offered signposting information. 91% of parents said they would have wanted signposting information and 67% would have wanted access to a support group. 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.