A psychological experience assessment protocol of parent caregivers in paediatric palliative care
AbstractBackground: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore se...
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| Format: | Article |
| Language: | English |
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Taylor & Francis Group
2023-12-01
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| Series: | Annals of Medicine |
| Subjects: | |
| Online Access: | https://www.tandfonline.com/doi/10.1080/07853890.2023.2268093 |
| _version_ | 1797302114359181312 |
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| author | Alexandra Jóni Nogueira Maria Teresa Ribeiro |
| author_facet | Alexandra Jóni Nogueira Maria Teresa Ribeiro |
| author_sort | Alexandra Jóni Nogueira |
| collection | DOAJ |
| description | AbstractBackground: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents’ own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed. |
| first_indexed | 2024-03-07T23:32:13Z |
| format | Article |
| id | doaj.art-13ef23cfb17d4208b21a68e047b9d957 |
| institution | Directory Open Access Journal |
| issn | 0785-3890 1365-2060 |
| language | English |
| last_indexed | 2024-03-07T23:32:13Z |
| publishDate | 2023-12-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | Annals of Medicine |
| spelling | doaj.art-13ef23cfb17d4208b21a68e047b9d9572024-02-20T11:58:24ZengTaylor & Francis GroupAnnals of Medicine0785-38901365-20602023-12-0155210.1080/07853890.2023.2268093A psychological experience assessment protocol of parent caregivers in paediatric palliative careAlexandra Jóni Nogueira0Maria Teresa Ribeiro1CICPSI, Faculty of Psychology, University of Lisbon, Alameda da Universidade, Lisboa, PortugalCICPSI, Faculty of Psychology, University of Lisbon, Alameda da Universidade, Lisboa, PortugalAbstractBackground: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents’ own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.https://www.tandfonline.com/doi/10.1080/07853890.2023.2268093Paediatric palliative carelife-limiting conditionsparent caregiversfamilypsychological assessmentqualitative methods |
| spellingShingle | Alexandra Jóni Nogueira Maria Teresa Ribeiro A psychological experience assessment protocol of parent caregivers in paediatric palliative care Annals of Medicine Paediatric palliative care life-limiting conditions parent caregivers family psychological assessment qualitative methods |
| title | A psychological experience assessment protocol of parent caregivers in paediatric palliative care |
| title_full | A psychological experience assessment protocol of parent caregivers in paediatric palliative care |
| title_fullStr | A psychological experience assessment protocol of parent caregivers in paediatric palliative care |
| title_full_unstemmed | A psychological experience assessment protocol of parent caregivers in paediatric palliative care |
| title_short | A psychological experience assessment protocol of parent caregivers in paediatric palliative care |
| title_sort | psychological experience assessment protocol of parent caregivers in paediatric palliative care |
| topic | Paediatric palliative care life-limiting conditions parent caregivers family psychological assessment qualitative methods |
| url | https://www.tandfonline.com/doi/10.1080/07853890.2023.2268093 |
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