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| ID | Type | Description | Link |
|---|---|---|---|
| 2018-A01226-49 | Other Identifier | ID-RCB number, ANSM |
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COVID
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Palliative care is now an accepted principle in most maternity and neonatology wards, however not much is known about its psychological and social consequences on families. Some children continue their life after a palliative care decision has been taken. In France, quality of life and the neuro-developmental evolution of newborns who continue their life after a palliative care decision has been taken, have never been studied.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Parents only |
| ||
| Children and Parents |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Semi-structured interviews | Other | Exploring the psychological and social impact on parents of a palliative care decision concerning their child in the neonatal period |
|
| Measure | Description | Time Frame |
|---|---|---|
| Semi Structured interview | Parents : Exploring the psychological and social impact of the palliative care decision 2 hours semi structured interviews will be done to describe the psychological and social impact a decision of palliative care concerning their newborn infant has on parents. | 24 months after palliative care decision |
| Measure | Description | Time Frame |
|---|---|---|
| Ages and Stages Questionnaire (ASQ) - Clinical Examination of Child | Child : Neuro-Developmental Assessment | 24 months after palliative care decision |
| Semi Structured Interview | Parents : Determinants of the psychological and social impact of the palliative care decision |
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Inclusion Criteria:
Exclusion Criteria:
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children and parents followed in pediatric unit whom a decision of palliative care has been made in the neonatal period
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| Name | Affiliation | Role |
|---|---|---|
| Laurent Storme, MD,PhD | University Hospital, Lille | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CH ARRAS | Arras | France | ||||
| CH LENS |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| Questionnaire | Other | Assessing the neuro-developmental evolution of children and understanding the determinants of the psychological and social impact of palliative care decisions on parents |
|
| following Scales | Other | Scales : Hospital Anxiety and Depression, Intolerance to Uncertainty, and Brief COPE. |
|
| 24 months after palliative care decision |
| Hospital Anxiety and Depression Scale (HADS) | Parents :Psychometric Measure of Anxiety and Depression The scale allows to detect anxiety and depression using 14 items rated from 0-3. | 24 months after palliative care decision |
| Intolerance to Uncertainty Scale (EEI) | Parents : Psychometric Measure of Intolerance to Uncertainty This questionnaire contains 27 items measuring emotions, cognitions and behaviours in ambiguous situations, the consequences of being uncertain and attempts to control the future.Items are rated on a Likert scale from 1 ("Not at all matching") to 5 ("Very matching"). The total share is obtained by adding the items. | 24 months after palliative care decision |
| Brief COPE | Parents : Psychometric Measure of Coping Strategies The Brief-COPE is a 28 item self-report questionnaire withs scoring and interpretation: Positive reframing / Planning/ Humor / Religion/Self-blame | 24 months after palliative care decision |
| Lens |
| France |
| Hop Jeanne de Flandre Chu Lille | Lille | 59037 | France |
| CH Valenciennes | Valenciennes | France |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |