Neonatal Critical Care
Conditions
Keywords
Palliative care, Maternity, newborn, parents
Brief summary
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.
Interventions
OTHERSemi-structured interviews
Exploring the psychological and social impact on parents of a palliative care decision concerning their child in the neonatal period
OTHERQuestionnaire
Assessing the neuro-developmental evolution of children and understanding the determinants of the psychological and social impact of palliative care decisions on parents
OTHERfollowing Scales
Scales : Hospital Anxiety and Depression, Intolerance to Uncertainty, and Brief COPE.
Sponsors
University Hospital, Lille
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
* Father and/or Mother of a child, who is alive or not, for whom a decision of palliative care has been made in the neonatal period * Under the care of one of the Level 3 Maternity Centers in the North and Pas-de-Calais departments (Arras, Lens, Lille, Valenciennes) since 2018 * Written consent of the two legal guardians of the child allowing the collection of data concerning the child * Written consent of the parent(s) participating to this study by completing the parental questionnaires
Exclusion criteria
* Medico-legal complaint underway * Parents who do not understand French * Parents or children who are under legal protection (guardianship, curatorship) * Parents or children who are not Social Security beneficiaries
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Semi Structured interview | 24 months after palliative care decision | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Ages and Stages Questionnaire (ASQ) - Clinical Examination of Child | 24 months after palliative care decision | Child : Neuro-Developmental Assessment |
| Semi Structured Interview | 24 months after palliative care decision | Parents : Determinants of the psychological and social impact of the palliative care decision |
| Hospital Anxiety and Depression Scale (HADS) | 24 months after palliative care decision | Parents :Psychometric Measure of Anxiety and Depression The scale allows to detect anxiety and depression using 14 items rated from 0-3. |
| Intolerance to Uncertainty Scale (EEI) | 24 months after palliative care decision | 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. |
| Brief COPE | 24 months after palliative care decision | 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 |
Countries
France
Contacts
PRINCIPAL_INVESTIGATORLaurent Storme, MD,PhD
University Hospital, Lille
Outcome results
None listed