Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified.
Women Birth
; 29(6): e99-e104, 2016 Dec.
Article
em En
| MEDLINE
| ID: mdl-27156021
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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Contexto em Saúde:
5_ODS3_mortalidade_materna
Base de dados:
MEDLINE
Assunto principal:
Pais
/
Encaminhamento e Consulta
/
Satisfação do Paciente
/
Assistência Perinatal
/
Tomada de Decisões
/
Doenças Raras
/
Serviços de Saúde Materna
Tipo de estudo:
Diagnostic_studies
/
Prognostic_studies
/
Qualitative_research
Aspecto:
Patient_preference
Limite:
Adult
/
Female
/
Humans
/
Infant
/
Male
Idioma:
En
Revista:
Women Birth
Ano de publicação:
2016
Tipo de documento:
Article