Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified.

Johnson, Judith ORCID: 0000-0003-0431-013X, Adams-Spink, Geoff, Arndt, Tobias, Wijeratne, Dileep, Heyhoe, Jane and Taylor, Peter ORCID: 0000-0003-1407-0985 (2016) Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified. Women and birth : journal of the Australian College of Midwives, 29 (6). e99-e104.

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Abstract

<h4>Problem and background</h4>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.<h4>Aims</h4>The current research aimed to address this by investigating satisfaction with service, occurrence of signposting and preferences in this group.<h4>Methods</h4>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.<h4>Findings</h4>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.<h4>Conclusions</h4>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.

Item Type:	Article
Uncontrolled Keywords:	Humans, Limb Deformities, Congenital, Rare Diseases, Perinatal Care, Health Care Surveys, Personal Satisfaction, Parents, Decision Making, Adult, Infant, Maternal Health Services, Referral and Consultation, Patient Satisfaction, Delivery of Health Care, Female, Male, Surveys and Questionnaires
Depositing User:	Symplectic Admin
Date Deposited:	02 Aug 2019 15:13
Last Modified:	19 Jan 2023 00:36
DOI:	10.1016/j.wombi.2016.04.007
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3050865

Available Versions of this Item

• Providing Family-centred Care for Rare Diseases in Maternity Services: Parent Satisfaction and Preferences when Dysmelia is Identified. (deposited 21 Apr 2016 11:57)
  • Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified. (deposited 23 May 2016 09:42)
    • Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified. (deposited 02 Aug 2019 15:13) [Currently Displayed]