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dc.contributor.authorAoun, Samar
dc.contributor.authorStegmann, R.
dc.contributor.authorDeleuil, R.
dc.contributor.authorMomber, S.
dc.contributor.authorCuddeford, L.
dc.contributor.authorPhillips, M.B.
dc.contributor.authorLyon, M.E.
dc.contributor.authorGill, Fenella
dc.date.accessioned2023-01-01T07:01:26Z
dc.date.available2023-01-01T07:01:26Z
dc.date.issued2022
dc.identifier.citationAoun, S.M. and Stegmann, R. and Deleuil, R. and Momber, S. and Cuddeford, L. and Phillips, M.B. and Lyon, M.E. et al. 2022. “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care. Children. 9 (3): ARTN 322.
dc.identifier.urihttp://hdl.handle.net/20.500.11937/89902
dc.identifier.doi10.3390/children9030322
dc.description.abstract

Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Methods: The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2–8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018–2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Results: All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusions: Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.

dc.languageEnglish
dc.publisherMDPI
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.subjectScience & Technology
dc.subjectLife Sciences & Biomedicine
dc.subjectPediatrics
dc.subjectpalliative care
dc.subjectend-of-life care
dc.subjectequity
dc.subjectpublic health approach
dc.subjectcompassionate communities
dc.subjectcaregiving
dc.subjectparents
dc.subjectpsychosocial support
dc.subjectEND
dc.title“It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care
dc.typeJournal Article
dcterms.source.volume9
dcterms.source.number3
dcterms.source.issn2227-9067
dcterms.source.titleChildren
dc.date.updated2023-01-01T07:01:24Z
curtin.departmentSchool of Nursing, Midwifery and Paramedicine
curtin.departmentCurtin School of Nursing
curtin.accessStatusOpen access
curtin.facultyFaculty of Health Sciences
curtin.contributor.orcidGill, Fenella [0000-0003-4697-9640]
curtin.contributor.researcheridGill, Fenella [O-5572-2018]
curtin.identifier.article-numberARTN 322
dcterms.source.eissn2227-9067
curtin.contributor.scopusauthoridGill, Fenella [55164881900]
curtin.contributor.scopusauthoridAoun, Samar [35551329400]


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