Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review
Abstract Background Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life ca...
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| Format: | Article |
| Language: | English |
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BMC
2025-01-01
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| Series: | BMC Palliative Care |
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| Online Access: | https://doi.org/10.1186/s12904-025-01661-1 |
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| author | Ashleen Crowe Fiona Hurley Gemma Kiernan Helen Kerr Yvonne Corcoran Jayne Price Joanne Reid Eileen Courtney Tracey McConnell Patricia McNeilly Veronica Lambert |
| author_facet | Ashleen Crowe Fiona Hurley Gemma Kiernan Helen Kerr Yvonne Corcoran Jayne Price Joanne Reid Eileen Courtney Tracey McConnell Patricia McNeilly Veronica Lambert |
| author_sort | Ashleen Crowe |
| collection | DOAJ |
| description | Abstract Background Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents’ capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents’ perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions. |
| format | Article |
| id | doaj-art-4fed02e75abc49158d6e3cca79051070 |
| institution | Kabale University |
| issn | 1472-684X |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj-art-4fed02e75abc49158d6e3cca790510702025-02-02T12:47:39ZengBMCBMC Palliative Care1472-684X2025-01-0124111410.1186/s12904-025-01661-1Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative reviewAshleen Crowe0Fiona Hurley1Gemma Kiernan2Helen Kerr3Yvonne Corcoran4Jayne Price5Joanne Reid6Eileen Courtney7Tracey McConnell8Patricia McNeilly9Veronica Lambert10School of Nursing and Midwifery, Medical Biology Centre, Queen’s University BelfastSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City UniversitySchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City UniversitySchool of Nursing and Midwifery, Medical Biology Centre, Queen’s University BelfastSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City UniversitySchool of Nursing, Allied, and Public Health, Kingston UniversitySchool of Nursing and Midwifery, Medical Biology Centre, Queen’s University BelfastSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City UniversitySchool of Nursing and Midwifery, Medical Biology Centre, Queen’s University BelfastSchool of Nursing and Midwifery, Medical Biology Centre, Queen’s University BelfastSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City UniversityAbstract Background Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents’ capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents’ perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.https://doi.org/10.1186/s12904-025-01661-1Palliative carePaediatricsPediatricsEnd-of-lifePlace of careDecision-making |
| spellingShingle | Ashleen Crowe Fiona Hurley Gemma Kiernan Helen Kerr Yvonne Corcoran Jayne Price Joanne Reid Eileen Courtney Tracey McConnell Patricia McNeilly Veronica Lambert Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review BMC Palliative Care Palliative care Paediatrics Pediatrics End-of-life Place of care Decision-making |
| title | Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review |
| title_full | Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review |
| title_fullStr | Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review |
| title_full_unstemmed | Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review |
| title_short | Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review |
| title_sort | decision making regarding place of end of life care for children with life limiting and life threatening conditions a systematic integrative review |
| topic | Palliative care Paediatrics Pediatrics End-of-life Place of care Decision-making |
| url | https://doi.org/10.1186/s12904-025-01661-1 |
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