YP
Y. Pronk
info
Please Note
<p>This page displays the records of the person named above and is not linked to a unique person identifier. This record may need to be merged to a profile.</p>
1 records found
1
The needs of naasten during palliative sedation at home in the Netherlands
Designing a layered support system for naasten navigating uncertainty during palliative sedation at home
Palliative sedation is a medical intervention used in the final phase of life to relieve suffering caused by refractory symptoms. It involves proportionately lowering a patient’s level of consciousness. In the Netherlands, palliative sedation increasingly takes place at home, where much of the process unfolds in the presence of naasten: partners, relatives, friends and others closely involved with the patient. They may provide practical and emotional support, observe changes in the patient and communicate with healthcare professionals, while facing uncertainty about what to expect, how to interpret what they observe and what is expected of them.
This graduation project explored how naasten experience palliative sedation at home in the Dutch context and what support needs emerge during this process. It also examined how these insights could be translated into support before, during and after palliative sedation. The project combined a literature review, semi-structured interviews with seven naasten and six healthcare professionals, a hospice visit, co-creation and scenario-based evaluation. Rituals and meaningful moments around dying initially provided a lens for the design process, but the findings redirected the focus towards more fundamental needs concerning understanding, uncertainty and support.
The findings indicate that naasten experience palliative sedation at home as an unfolding and partly unpredictable process. Uncertainty may arise before sedation begins, during the waiting period and around the patient’s death. Naasten may have questions about how the process will unfold, whether the patient is comfortable, how bodily changes should be interpreted, when professional support is needed and what role they are expected to take. At the same time, they may remain present, provide care and seek to create calm, closeness and space for farewell. The infusion pump and the possibility of administering a bolus provided one example of how uncertainty could become intertwined with responsibility. More broadly, the findings pointed to a need for timely preparation, understandable information, repeated reassurance and clear access to professional guidance throughout the process.
These findings informed the Wat nu? portfolio, consisting of death education, the Wat nu? booklet, the Wat nu? app and a 24/7 support line. Together, the interventions provide complementary support at different moments: early familiarisation before palliative sedation becomes personally relevant, an accessible first orientation when palliative sedation is introduced, more detailed situation-based guidance during the process and direct professional reassurance when self-guided information is insufficient. Rather than prescribing a fixed pathway, the interventions can be accessed and revisited according to timing, preference and need.
The portfolio does not aim to eliminate uncertainty from an inherently unpredictable and emotionally demanding process. Instead, it aims to make uncertainty more manageable through preparation, accessible guidance and human reassurance. The project provides a research-informed design direction for supporting naasten before, during and after palliative sedation at home. Further medical validation, organisational development and evaluation in real care settings are required before implementation.
...
This graduation project explored how naasten experience palliative sedation at home in the Dutch context and what support needs emerge during this process. It also examined how these insights could be translated into support before, during and after palliative sedation. The project combined a literature review, semi-structured interviews with seven naasten and six healthcare professionals, a hospice visit, co-creation and scenario-based evaluation. Rituals and meaningful moments around dying initially provided a lens for the design process, but the findings redirected the focus towards more fundamental needs concerning understanding, uncertainty and support.
The findings indicate that naasten experience palliative sedation at home as an unfolding and partly unpredictable process. Uncertainty may arise before sedation begins, during the waiting period and around the patient’s death. Naasten may have questions about how the process will unfold, whether the patient is comfortable, how bodily changes should be interpreted, when professional support is needed and what role they are expected to take. At the same time, they may remain present, provide care and seek to create calm, closeness and space for farewell. The infusion pump and the possibility of administering a bolus provided one example of how uncertainty could become intertwined with responsibility. More broadly, the findings pointed to a need for timely preparation, understandable information, repeated reassurance and clear access to professional guidance throughout the process.
These findings informed the Wat nu? portfolio, consisting of death education, the Wat nu? booklet, the Wat nu? app and a 24/7 support line. Together, the interventions provide complementary support at different moments: early familiarisation before palliative sedation becomes personally relevant, an accessible first orientation when palliative sedation is introduced, more detailed situation-based guidance during the process and direct professional reassurance when self-guided information is insufficient. Rather than prescribing a fixed pathway, the interventions can be accessed and revisited according to timing, preference and need.
The portfolio does not aim to eliminate uncertainty from an inherently unpredictable and emotionally demanding process. Instead, it aims to make uncertainty more manageable through preparation, accessible guidance and human reassurance. The project provides a research-informed design direction for supporting naasten before, during and after palliative sedation at home. Further medical validation, organisational development and evaluation in real care settings are required before implementation.
...
Palliative sedation is a medical intervention used in the final phase of life to relieve suffering caused by refractory symptoms. It involves proportionately lowering a patient’s level of consciousness. In the Netherlands, palliative sedation increasingly takes place at home, where much of the process unfolds in the presence of naasten: partners, relatives, friends and others closely involved with the patient. They may provide practical and emotional support, observe changes in the patient and communicate with healthcare professionals, while facing uncertainty about what to expect, how to interpret what they observe and what is expected of them.
This graduation project explored how naasten experience palliative sedation at home in the Dutch context and what support needs emerge during this process. It also examined how these insights could be translated into support before, during and after palliative sedation. The project combined a literature review, semi-structured interviews with seven naasten and six healthcare professionals, a hospice visit, co-creation and scenario-based evaluation. Rituals and meaningful moments around dying initially provided a lens for the design process, but the findings redirected the focus towards more fundamental needs concerning understanding, uncertainty and support.
The findings indicate that naasten experience palliative sedation at home as an unfolding and partly unpredictable process. Uncertainty may arise before sedation begins, during the waiting period and around the patient’s death. Naasten may have questions about how the process will unfold, whether the patient is comfortable, how bodily changes should be interpreted, when professional support is needed and what role they are expected to take. At the same time, they may remain present, provide care and seek to create calm, closeness and space for farewell. The infusion pump and the possibility of administering a bolus provided one example of how uncertainty could become intertwined with responsibility. More broadly, the findings pointed to a need for timely preparation, understandable information, repeated reassurance and clear access to professional guidance throughout the process.
These findings informed the Wat nu? portfolio, consisting of death education, the Wat nu? booklet, the Wat nu? app and a 24/7 support line. Together, the interventions provide complementary support at different moments: early familiarisation before palliative sedation becomes personally relevant, an accessible first orientation when palliative sedation is introduced, more detailed situation-based guidance during the process and direct professional reassurance when self-guided information is insufficient. Rather than prescribing a fixed pathway, the interventions can be accessed and revisited according to timing, preference and need.
The portfolio does not aim to eliminate uncertainty from an inherently unpredictable and emotionally demanding process. Instead, it aims to make uncertainty more manageable through preparation, accessible guidance and human reassurance. The project provides a research-informed design direction for supporting naasten before, during and after palliative sedation at home. Further medical validation, organisational development and evaluation in real care settings are required before implementation.
This graduation project explored how naasten experience palliative sedation at home in the Dutch context and what support needs emerge during this process. It also examined how these insights could be translated into support before, during and after palliative sedation. The project combined a literature review, semi-structured interviews with seven naasten and six healthcare professionals, a hospice visit, co-creation and scenario-based evaluation. Rituals and meaningful moments around dying initially provided a lens for the design process, but the findings redirected the focus towards more fundamental needs concerning understanding, uncertainty and support.
The findings indicate that naasten experience palliative sedation at home as an unfolding and partly unpredictable process. Uncertainty may arise before sedation begins, during the waiting period and around the patient’s death. Naasten may have questions about how the process will unfold, whether the patient is comfortable, how bodily changes should be interpreted, when professional support is needed and what role they are expected to take. At the same time, they may remain present, provide care and seek to create calm, closeness and space for farewell. The infusion pump and the possibility of administering a bolus provided one example of how uncertainty could become intertwined with responsibility. More broadly, the findings pointed to a need for timely preparation, understandable information, repeated reassurance and clear access to professional guidance throughout the process.
These findings informed the Wat nu? portfolio, consisting of death education, the Wat nu? booklet, the Wat nu? app and a 24/7 support line. Together, the interventions provide complementary support at different moments: early familiarisation before palliative sedation becomes personally relevant, an accessible first orientation when palliative sedation is introduced, more detailed situation-based guidance during the process and direct professional reassurance when self-guided information is insufficient. Rather than prescribing a fixed pathway, the interventions can be accessed and revisited according to timing, preference and need.
The portfolio does not aim to eliminate uncertainty from an inherently unpredictable and emotionally demanding process. Instead, it aims to make uncertainty more manageable through preparation, accessible guidance and human reassurance. The project provides a research-informed design direction for supporting naasten before, during and after palliative sedation at home. Further medical validation, organisational development and evaluation in real care settings are required before implementation.