Living with a Crucial Decision: A Qualitative Study of Parental Narratives Three Years after the Loss of Their Newborn in the NICU

BACKGROUND: The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU. METHODS: The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP. FINDINGS: Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child. INTERPRETATION: Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices

The experience of parents in Ronald McDonald houses in France

International audienceBackground: Ronald McDonald houses are located close to children's hospitals. They enable the hospitalized child to benefit from their family's presence, while helping the family to cope better with their child's hospital stay. This study aimed to describe the experience of parents staying in Ronald McDonald houses in France, identify their needs, and study the psychological impact of their child being in hospital. Method: This cross-sectional observational epidemiological study was conducted in 2016, using anonymous self-administered questionnaires offered to parents staying in one of the nine Ronald McDonald houses in France. The questionnaire had two sections: a general section about the hospitalized child, and a 62 questions section to be completed by each parent, including a Hospital Anxiety and Depression Scale (HADS). Results: The participation rate was 62.9%: 71% of mothers completed the questionnaire (n = 320), and 54.7% of fathers did so (n = 246). They were the parents of 333 children (53.9% boys, 46.1% girls), under 1 year old (44.1%), hospitalized in the following three departments: intensive care (24%), pediatric oncology (23.1%), and neonatal care (20.1%). The mothers on average spent 11 h a day at their child's bedside, while the fathers spent 8 h 47 min. The parents tended to be employees or manual workers, and mostly lived together, with an average 2-h journey to hospital. They reported financial problems in 42.1% of cases, significant sleep deprivation (>90 min) in 73.2% of cases, and anxiety and depressive disorders: anxiety (59%) and depression (26%). There were some significant differences between the experiences of mothers and fathers: mothers lost out on their sleep and lost more appetite, and spent more time at their child's bedside, while the fathers encountered twice as many work-related difficulties (p<0.01). Additionally, their perception of the Ronald McDonald House was similar, as over 90% of them stated that this family accommodation allowed them to feel closer to their child and supported them in their role as parents. Conclusion: The parents of children in hospital were 6–8 times more anxious than the general population, while clinical symptoms of depression were twice as common as in the overall population. Despite this suffering linked to their child's illness, the parents rated highly the support provided by the Ronald McDonald House in helping them cope with their child's time in hospital

Douleur physique du bébé et interactions précoces

PARIS7-Xavier Bichat (751182101) / SudocSudocFranceF

La part des parents dans la décision en réanimation néonatale (exploration d'un univers méconnu)

Qu est-ce qu une décision ? Comment se construit-elle dans la vraie vie ? La vision d une décision située entre délibération et action correspond-elle à une réalité ? Est-elle l acte qui crée une rupture dans le cours des évènements ?Pour explorer ces questions et secouer les cadres de la décision, ce travail s est appuyé sur l expérience humaine davantage que sur des analysesthéoriques. C est à la lumière de la narration de parents ayant perdu leurnouveau-né en réanimation, trois ans auparavant suite à une décision depoursuivre ou non des traitements, que nous proposons de revoir la notion dedécision.Le regard et le discours rétrospectifs des parents entendus lors d un entretiende recherche dévoilent tout un univers et les circonstances dramatiques dans les quelles ils ont été amenés à se déterminer. C est pris dans des émotions très fortes envers leur nouveau-né et dépendants des attitudes des soignants qu ils se sont approchés de leur enfant et qu ils se sont décidés ; nous constatons les ressources qu ils ont puisées à l intérieur d eux-mêmes pourrépondre à ces demandes des soignants. Dans ce contexte les actes delangage sont évoqués : par le seul fait de le dire, les parents réussissent à sedécider mais non à décider des actions des médecins.Les parents évoquent aussi leur présent, en tant qu avenir d un passé certes révolu mais qui se prolonge par la mémoire. Au présent, ils inscrivent leur narration dans la traversée du deuil et attribuent à l enfant perdu et à peine connu, une puissance d âme qui dépasse largement ce qui peut être imaginé.Les sentiments de responsabilité et de culpabilité qu ils éprouvent face à eux mêmes et face au petit mort donnent du sens au passé et participent a posteriori à une inscription de soi en tant qu un des acteurs dans cette histoire.La délibération semble possible après la mort de l enfant ; elle vient après coup insérer une forme de liberté humaine et de raison dans cette histoire.Revenant dans l univers des soignants, ce travail se termine par une réflexion sur les conditions nécessaires pour qu une telle décision soit acceptable à10long terme pour des parents : c est un choix non pas idéal mais raisonnable et suffisamment bon pour l enfant, une décision partagée sous la forme d une discussion, qui se construit dans le récit de leur vie. La possibilité de créer soi même quelque chose de personnel avec son enfant illumine cette histoire.La question que nous traitons est éthique en elle-même car elle participe à un questionnement philosophique de l action. Elle est d ordre éthique et philosophique, mais aussi pratique. Les parents vivent cette histoire sous le regard des soignants qui révèlent dans l interaction la considération qu ils ont pour eux et la prise en compte de leur vulnérabilité. Le discours des parents,ici accompagné d une réflexion rationnelle, pourrait favoriser l émergence chez les soignants d émotions empathiques et du sentiment d appartenir à une humanité commune. Sous cette forme, il peut aussi constituer un moyen didactique fort pour remettre en question des représentations un peu stéréotypées et plus généralement le modèle de la décision vécue en médecine.What is a decision ? How is a decision constructed, processed in real life ? Is a decision always temporally situated between deliberation and action ? Is it the action that ruptures reality at that point ? To explore these questions and question the limits of decision-making, this work has been created from an experience rather than theoretical analysis. Parental narration about the loss of their newborn in the NICU, three years before, in the aftermath of e decision to forgo life saving treatment, enlightens our analysis about what decision making actually is. Parental retrospective view and discourse gathered during a research interview unveil a unknown world of emotions and dramatic circumstances. In this context parents have to decide. It is with contradictory feelings towards their newborn and dependancy on caregivers that parents have come closer to their child and decided themselves. We enlighten the resource they have found insight themselves to reach from these requests from the carers.In this context, speech acts are brought up : by the fact of saying their decision, parents succeed in making their mind up but they do not decide what physician s actions will be. Parents also speak about their present life and feelings ; the present time is seen as the future of a past bygone but that goes on in the memory. Today, they describe their crossing of the mourning. The lost child s, scarcely known, appears now as a soul, with a power that exceeds largely what could be imagined. Feelings of guilt and responsibility experienced towards oneself and towards their dead child give sense to the past. These feelings retrospectively participate in creating a view of oneself as an actor in what happened. Deliberation seems possible even after the child s death. Il puts in the aftermath, a form of human freedom ad rationality. Finally, we return to the world of the caregivers and end with an analysis of the conditions of a sufficiently good decision, acceptable in the long term for the parents.PARIS11-SCD-Bib. électronique (914719901) / SudocSudocFranceF

Violent video gaming among French adolescents: Impact on mental health by genderPratique des jeux vidéos violents chez les adolescents français : impact sur la santé mentale selon le genre

International audienceL Encéphale, ParisBackground: Nowadays, video games are very popular among teenagers. This popularity generates concerns, whether in the media, among families or among the scientific community, who wonder about their potential harmful effects. The aim of this study was to assess the association between different types of use of video games (absence of use, use of violent video games, use of non-violent video games) and mental health and aggression. Methods: Data was drawn from a French cross-sectional study entitled u201cPortrait d Adolescentsu201d which included 15,235 adolescents using anonymous self-administered questionnaires. We defined three groups of use of video games (absence of use, use of violent video games, use of non-violent video games) and explored the association with mental health indicators among boys and girls. Results: The group categorized as u201cnon-gamersu201d consisted of 1288 adolescents (8.5%), while the u201cnon-violent video gamersu201d group comprised 8380 adolescents (55.5%) and the u201cviolent video gamersu201d group included 5430 participants (36%). Among adolescent boys, there was no observed association between responses to mental health-related questions and the type of video game playing. However, in the u201cviolent video gamersu201d group, a higher percentage of boys (6.8%) reported engaging in self-harm behaviors (p = 0.001). In contrast, in the u201cnon-violent video gamersu201d group, a lower proportion of boys (9.4%) reported participating in dangerous games (p &lt; 0.0001). For girls, the u201cviolent video gamersu201d group exhibited a higher proportion of responses indicating poorer mental health across all explored items: 22.8% reported a history of suicide attempts (p &lt; 0.0001), 22.3% reported depression (p &lt; 0.0001), 17.8% reported self harm (p &lt; 0.0001), and 11.2% reported participating in dangerous game (p &lt; 0.0001). Conclusion: Violent video games appear to be associated with varying behaviors depending on the gender of adolescents, and notably contribute to much poorer mental health among adolescent girls

Chronic conditions, subjective wellbeing and risky sexual behaviour among adolescents and young adults

International audienceThe purpose of this study is to clarify the relationship between having a chronic condition (CC) and several types of risky sexual behaviour (RSB) among adolescents and young adults. We used data from a multicentre cross-sectional study carried out on 14,431 adolescents from 137 French schools. Logistic regression was used to assess the association between several types of RSB and CCs among the 2680 participants aged 17 years or over who reported sexual intercourse. Survival analysis was conducted to assess the association between CCs and age at first sexual intercourse across the whole sample. Analyses were conducted separately by gender with and without adjustment for the parents’ education level, early menarche and subjective wellbeing (relationship with mother and father, depression, perceived health status and liking school). Among boys, having a CC was associated with a higher risk of RSB in both univariate (OR: 1.58 [95% CI: 1.10–2.27]) and multivariate analyses (aOR: 1.62 [95% CI: 1.11–2.38]). Among girls, the association between chronic condition and RSB in univariate analysis was non-significant (OR: 1.30 [95% CI: 0.97–1.76]) and disappeared after adjustment on subjective wellbeing (aOR: 1.08 [95% CI: 0.78–1.49]). There was no association between CC and age at first sexual intercourse. Conclusion: There were major gender differences. Boys with a CC were more prone to engage in RSB independent of their subjective wellbeing, whereas in girls, subjective wellbeing seemed to mediate the relationship between CC and RSB. Clinicians should be aware of those gender differences in order to deliver preventive strategies regarding sexuality that target both genders.What is Known:• Young people with chronic conditions have a higher likelihood of engaging in risky sexual behaviour.• Engaging in such behaviours can be much more costly, as it can weaken their underlying state of health.What is New:• We found major gender differences. Boys were more prone to engage in risky behaviour independent of their subjective wellbeing, whereas in girls, it seemed to play an important role.• By understanding how risky sexual behaviour differs according to gender, clinicians can deliver prevention messages that target both genders

The role of parental and friends’ support preventing suicide attempts among French sexual minority adolescents

This present study aimed to search for parental and friend support roles to prevent suicide attempts among adolescents who identify as lesbian, gay, and bisexual (LGB) in France. Data were drawn from a French cross-sectional study entitled “Portrait d’Adolescents”. An anonymous self-questionnaire was fulfilled by 14,265 French adolescents (ages from 13 to 20) in 2013, and 637 (4.47%) were identified as LGB. Chi-square analysis was used to estimate statistical differences between self-reported suicide and non-suicide attempters in the whole sample and then in LGB and heterosexual subgroups separately. Multiple logistic regression analyses were then performed to examine the associations of self-reported suicide attempts (dependent variable) with the effects of parental and friend support and other factors based on the whole data and further on the data subsets among the LGB and the heterosexual subjects. Suicide attempt was independently associated with sexual orientation (30.7% vs 10.6%; OR=2.04 [1.62-2.56]; p&lt;0.0001). Both parental and friend support appeared protective factors in the heterosexuals (OR=0.52 [0.45-0.60] and OR=0.75 [0.61-0.93]), whereas only parental support was significant in the LGB group (OR=0.51 [0.31-0.82]), independently of other variables. French adolescents who identify as LGB have a higher risk for suicidality than their heterosexual peers. Special attention needs to be given to this vulnerable population when developing suicide prevention programs. Parental support identified as an effective protective factor should be systematically searched to prevent suicidality among LGB

Le rôle du soutien parental et soutien amical dans la prévention de tentatives de suicide chez les adolescents français de minorités sexuelles

International audienceObjectives: French sexual minority adolescents are at higher risk for suicide attempts than their heterosexual peers. However, little is known about the role of parents’ and friends’ support among French lesbian, gay and bisexual (LGB) youth. This study aimed to research the role of their support in preventing suicide attempts among LGB adolescents in France. Materials and Methods: Data were drawn from a French cross-sectional study entitled “Portraits d'adolescents”. Parental support was defined by satisfactory relations between participants and their parents. Friends’ support was defined by satisfactory relations between participants and their friends. Chi-square and multiple logistic regression analyses were used to estimate and identify associated factors of suicide attempts in LGB as opposed to heterosexual youth. Results: Data from a sample of 14,265 French adolescents aged 13 to 20 were analyzed. Among them, 637 (4.47%) identified as LGB. Attempted suicide was independently associated with sexual orientation (30.7% vs 10.6%; OR = 2.59 [2.11–3.18]; p < 0.0001). Both parents’ and friends’ support appeared to be protective factors in suicide attempts among heterosexuals (adjusted ORs = 0.40 [0.35–0.46] and 0.61 [0.51–0.75], respectively), whereas in the LGB group, only parental support was significant (adjusted OR = 0.42 [0.27–0.65]), independently of other variables. Discussion: Prevention efforts might be carried out by identifying within-group differences among French adolescents with different sexual orientations. The supportive role of family members should be strengthened. Positive resources and salutary support systems may effectively prevent suicide attempts. Conclusions: French LGB adolescents have a higher risk for suicide attempts than their heterosexual peers. Parental support was reconfirmed as a major protective factor against suicide attempts in sexual minority adolescents

A systematic review of the factors associated with suicide attempts among sexual-minority youth

International audienceBackground and objectives: Recent literature reported a higher risk of suicide attempts among sexual minority youth. Discovering the risk and protective factors of suicide attempts among this vulnerable population can play a key role in reducing the suicide rate. Our research aims to systematically search for the risk and protective factors for suicide attempts among sexual minority youth. Methods: We have conducted a systematic review of published studies of associated factors for suicide attempts in sexual minority youth. Four databases up to 2020 were searched to find relevant studies. Results: Twelve articles were included. For sexual minority youth, the identified risk factors associated with suicide attempts are early coming out, being unacceptable by families, dissatisfaction with sexual minority friendships, too few friends, physical abuse, sexual abuse, and bullying. The identified protective factors for suicide attempts are feeling safe at school, teacher support, anti-bullying policy, and other adult support. Conclusion: Both risk and protective factors for suicide attempts stem directly from the environments in which youth grew up: family, school, and the internet. Effective preventive measures among sexual minority youth need to be developed and implemented. Societal-level anti-stigma interventions are needed to reduce the risk of victimization and awareness should be raised among family and friends