Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia
Background/objectives Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory proces...
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BMJ Publishing Group
2023-12-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/12/e075740.full |
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| author | Katrina Williams Lynn Gillam Jenny Hynson Sidharth Vemuri Jenny O'Neill |
| author_facet | Katrina Williams Lynn Gillam Jenny Hynson Sidharth Vemuri Jenny O'Neill |
| author_sort | Katrina Williams |
| collection | DOAJ |
| description | Background/objectives Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation.Design Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors.Setting Acute intensive and long-term outpatient paediatric care in Victoria, Australia.Participants 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period.Results Three key themes in a preparatory process (termed ‘shepherding’) were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes.Conclusions Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child’s health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians’ decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed. |
| format | Article |
| id | doaj-art-96da2974f4064fb0b88c82b41361125f |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2023-12-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-96da2974f4064fb0b88c82b41361125f2025-02-07T15:30:14ZengBMJ Publishing GroupBMJ Open2044-60552023-12-01131210.1136/bmjopen-2023-075740Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in AustraliaKatrina Williams0Lynn Gillam1Jenny Hynson2Sidharth Vemuri3Jenny O'Neill4Department of Paediatrics, Faculty of Medicine, Dentistry and Health Science, The University of Melbourne, Melbourne, Victoria, Australia2 Children`s Bioethics Centre, The Royal Children`s Hospital Melbourne, Melbourne, Victoria, AustraliaVictorian Paediatric Palliative Care Program, The Royal Children`s Hospital Melbourne, Parkville, Victoria, AustraliaVictorian Paediatric Palliative Care Program, The Royal Children`s Hospital Melbourne, Parkville, Victoria, AustraliaChildren`s Bioethics Centre, The Royal Children`s Hospital Melbourne, Parkville, Victoria, AustraliaBackground/objectives Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation.Design Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors.Setting Acute intensive and long-term outpatient paediatric care in Victoria, Australia.Participants 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period.Results Three key themes in a preparatory process (termed ‘shepherding’) were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes.Conclusions Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child’s health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians’ decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.https://bmjopen.bmj.com/content/13/12/e075740.full |
| spellingShingle | Katrina Williams Lynn Gillam Jenny Hynson Sidharth Vemuri Jenny O'Neill Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia BMJ Open |
| title | Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia |
| title_full | Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia |
| title_fullStr | Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia |
| title_full_unstemmed | Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia |
| title_short | Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia |
| title_sort | shepherding parents to prepare for end of life decision making a critical phenomenological study of the communication approach of paediatricians caring for children with life limiting conditions in australia |
| url | https://bmjopen.bmj.com/content/13/12/e075740.full |
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