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The first year: the support needs of parents caring for a child with an intellectual disability

Douglas, Tracy, Redley, Bernice and Ottmann, Goetz 2016, The first year: the support needs of parents caring for a child with an intellectual disability, Journal of advanced nursing, vol. 72, no. 11, pp. 2738-2749, doi: 10.1111/jan.13056.

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Title The first year: the support needs of parents caring for a child with an intellectual disability
Author(s) Douglas, Tracy
Redley, BerniceORCID iD for Redley, Bernice orcid.org/0000-0002-2376-3989
Ottmann, Goetz
Journal name Journal of advanced nursing
Volume number 72
Issue number 11
Start page 2738
End page 2749
Total pages 12
Publisher Wiley-Blackwell Publishing
Place of publication Chichester, Eng.
Publication date 2016-11
ISSN 1365-2648
Keyword(s) child
infant
information
intellectual disability
midwives
nurses
paediatrics
parent
support
Science & Technology
Life Sciences & Biomedicine
Nursing
DOWN-SYNDROME
YOUNG-CHILDREN
QUALITATIVE DESCRIPTION
DEVELOPMENTAL-DISABILITIES
PATIENT ENGAGEMENT
POSTNATAL SUPPORT
DIAGNOSIS
MOTHERS
HEALTH
EXPERIENCES
Summary AIM: To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. BACKGROUND: Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. DESIGN: The study used a qualitative descriptive methodology. METHODS: Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. FINDINGS: Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. CONCLUSION: This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs.
Language eng
DOI 10.1111/jan.13056
Field of Research 111099 Nursing not elsewhere classified
111403 Paediatrics
111703 Care for Disabled
1110 Nursing
Socio Economic Objective 920403 Disability and Functional Capacity
HERDC Research category C1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2016, John Wiley & Sons
Persistent URL http://hdl.handle.net/10536/DRO/DU:30085340

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