The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
Background: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. Objectives: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing pare...
| Main Authors: | , , , , , , , , |
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| Format: | Journal Article |
| Language: | English |
| Published: |
2020
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| Subjects: | |
| Online Access: | http://hdl.handle.net/20.500.11937/92268 |
| _version_ | 1848765630765858816 |
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| author | Aoun, Samar Gill, Fenella Phillips, M.B. Momber, S. Cuddeford, L. Deleuil, R. Stegmann, R. Howting, D. Lyon, M.E. |
| author_facet | Aoun, Samar Gill, Fenella Phillips, M.B. Momber, S. Cuddeford, L. Deleuil, R. Stegmann, R. Howting, D. Lyon, M.E. |
| author_sort | Aoun, Samar |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | Background: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. Objectives: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents’ needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. Methods: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018–2019) completed the pilot study. Results: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. Conclusion: Using the pCSNAT provided a concise and comprehensive ‘one stop shop’ for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents’ support needs to anticipate early and tailored supports including partnerships with the community. |
| first_indexed | 2025-11-14T11:38:19Z |
| format | Journal Article |
| id | curtin-20.500.11937-92268 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| language | eng |
| last_indexed | 2025-11-14T11:38:19Z |
| publishDate | 2020 |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-922682023-06-15T07:09:24Z The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups Aoun, Samar Gill, Fenella Phillips, M.B. Momber, S. Cuddeford, L. Deleuil, R. Stegmann, R. Howting, D. Lyon, M.E. cancer children health professionals life-limiting illness non-cancer paediatric palliative care parents support needs Background: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. Objectives: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents’ needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. Methods: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018–2019) completed the pilot study. Results: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. Conclusion: Using the pCSNAT provided a concise and comprehensive ‘one stop shop’ for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents’ support needs to anticipate early and tailored supports including partnerships with the community. 2020 Journal Article http://hdl.handle.net/20.500.11937/92268 10.1177/2632352420958000 eng http://creativecommons.org/licenses/by-nc/4.0/ fulltext |
| spellingShingle | cancer children health professionals life-limiting illness non-cancer paediatric palliative care parents support needs Aoun, Samar Gill, Fenella Phillips, M.B. Momber, S. Cuddeford, L. Deleuil, R. Stegmann, R. Howting, D. Lyon, M.E. The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups |
| title | The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups |
| title_full | The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups |
| title_fullStr | The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups |
| title_full_unstemmed | The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups |
| title_short | The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups |
| title_sort | profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups |
| topic | cancer children health professionals life-limiting illness non-cancer paediatric palliative care parents support needs |
| url | http://hdl.handle.net/20.500.11937/92268 |