“It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care
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 assessme...
| Main Authors: | , , , , , , , |
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| Format: | Journal Article |
| Language: | English |
| Published: |
MDPI
2022
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| Subjects: | |
| Online Access: | http://hdl.handle.net/20.500.11937/89902 |
| _version_ | 1848765295464808448 |
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| author | Aoun, Samar Stegmann, R. Deleuil, R. Momber, S. Cuddeford, L. Phillips, M.B. Lyon, M.E. Gill, Fenella |
| author_facet | Aoun, Samar Stegmann, R. Deleuil, R. Momber, S. Cuddeford, L. Phillips, M.B. Lyon, M.E. Gill, Fenella |
| author_sort | Aoun, Samar |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | 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. |
| first_indexed | 2025-11-14T11:32:59Z |
| format | Journal Article |
| id | curtin-20.500.11937-89902 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| language | English |
| last_indexed | 2025-11-14T11:32:59Z |
| publishDate | 2022 |
| publisher | MDPI |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-899022023-02-01T08:02:34Z “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care Aoun, Samar Stegmann, R. Deleuil, R. Momber, S. Cuddeford, L. Phillips, M.B. Lyon, M.E. Gill, Fenella Science & Technology Life Sciences & Biomedicine Pediatrics palliative care end-of-life care equity public health approach compassionate communities caregiving parents psychosocial support END 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. 2022 Journal Article http://hdl.handle.net/20.500.11937/89902 10.3390/children9030322 English http://creativecommons.org/licenses/by/4.0/ MDPI fulltext |
| spellingShingle | Science & Technology Life Sciences & Biomedicine Pediatrics palliative care end-of-life care equity public health approach compassionate communities caregiving parents psychosocial support END Aoun, Samar Stegmann, R. Deleuil, R. Momber, S. Cuddeford, L. Phillips, M.B. Lyon, M.E. Gill, Fenella “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care |
| title | “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care |
| title_full | “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care |
| title_fullStr | “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care |
| title_full_unstemmed | “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care |
| title_short | “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care |
| title_sort | “it is a whole different life from the life i used to live”: assessing parents’ support needs in paediatric palliative care |
| topic | Science & Technology Life Sciences & Biomedicine Pediatrics palliative care end-of-life care equity public health approach compassionate communities caregiving parents psychosocial support END |
| url | http://hdl.handle.net/20.500.11937/89902 |