Résultats de recherche

1. Objectifs

Intentions :
«The primary objective of this pilot study is to evaluate the feasibility and acceptability of the NeuroN-QI [a nurturing and quiet intervention to promote infant neurodevelopment] and the study procedures. The secondary objectives are to assess the feasibility and acceptability of the NeuroN-QI by the nurses, assess the nurses’ training needs about the components of the NeuroN-QI, and estimate the preliminary effects of the NeuroN-QI on infants’ neurodevelopment as well as maternal stress and anxiety at infants’ 36 weeks of gestational age.» (p. 3194)

2. Méthode

Échantillon/Matériau :
This pilot study «will be conducted in two level-III NICUs [Neonatal Intensive Care Unit] of university-affiliated hospitals in Montréal, Québec, Canada with the same NICU design: 80 single-family rooms [SFR] in one NICU and 52 SFR in the other.» (p. 3194) «Infants will be eligible if they are born between 26-and 316/7-weeks GA [of gestational age].» (p. 3195) «A total of 30 mother–infant dyads will be recruited […].» (p. 3198)

Instruments :
- Questionnaires
- Grille d’observation

Type de traitement des données :
Analyse statistique

3. Résumé

This pilot study «will assess the feasibility and acceptability of the NeuroN-QI and study procedures, as well as estimate the preliminary effects of a specific combination of DC [developmental care] interventions on preterm infants’ neurodevelopment and mothers’ levels of stress and anxiety. [The] pilot study will also identify neonatal nurses’ knowledge needs and opportunities to further develop their competencies regarding the DC components of the NeuroN-QI; SSC [Skin-to-skin contact], auditory and olfactive stimulation, and quiet period with controlled light and noise levels.» (p. 3199) «[The] pilot RCT [randomized clinical trial] is an innovative step toward evaluating a feasible and acceptable nursing intervention to guide neonatal clinical care and will be fundamental to guide the full-scale RCT evaluating the NeuroN-QI intervention’ effects.» (p. 3199-3200)

1. Objectifs

Intentions :
«The objectives of this study were to describe (a) how mothers experienced their involvement in their children’s PICU care through the T&T intervention and (b) whether mothers would participate in this kind of intervention again.» (p. 153)

2. Méthode

Échantillon/Matériau :
«Sixty-five English and French-speaking mothers were recruited using convenience sampling.» (p. 153) in three Canadian PICUs.

Instruments :
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé

«Increasingly, the active participation of parents in the care of their child during hospitalisation in the paediatric intensive care unit (PICU) is advocated as a central component of family centred care (Just, 2005) and a critical strategy in facilitating child and parent coping (Diaz-Caneja et al., 2005; Melnyk et al., 2004). Parental involvement fosters family normalcy, integrity and relationships in a time of high anxiety and uncertainty (Rennick, 1995; Tomlinson et al., 1999). [...] Despite the potential value of active parent participation in care, few researchers have capitalised on parental presence when designing PICU intervention studies.» (p. 152) «This study is the first to describe the experiences of mothers taught to use a T&T intervention with their children undergoing painful PICU procedures. Findings demonstrate that mothers were not overwhelmed by participating in a PICU comfort intervention. In fact, most were willing participants who welcomed the opportunity to comfort their child during an invasive procedure. Giving parents the choice of being involved in their child’s care using touch and distraction techniques during painful procedures can provide them with the opportunity to parent their child, and a sense of having helped their child during a difficult PICU experience.» (p. 156)

1. Objectifs

Intentions :
« To argue that that [sic] there has been a remarkable absence of discussion of the importance of parental love in the pediatric intensive care literature, and that this silence has been to the detriment of both medical and nursing pediatric intensive care practice. » (p. 165)

2. Méthode

Type de traitement des données :
Réflexion critique

3. Résumé

« Research and anecdotal literature to date have focused on the negative changes that occur in the parental role during a child’s pediatric intensive care unit admission. In contrast, the love that a parent holds for his or her child is profoundly positive and stable; it is not a ’role’ that can be taken away or threatened. It is proposed that the recognition and acknowledgment of this love will alter the critical care encounter for parents, physicians, and nurses and result in a better understanding by the staff of parental attitudes and behaviors. This may be particularly effective in situations where it is perceived that unreasonable demands are being made for futile therapy. » (p. 165)

1. Objectifs

Intentions :
« The objective of this study was to uncover the moral experience of families with a child who requires assisted ventilation at home. » (p. e50)

2. Méthode

Échantillon/Matériau :
« Twelve families (38 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. » (p. e48)

Instruments :
- Guide d’entretien semi-directif;
- Grille d’observation.

Type de traitement des données :
Analyse de contenu

3. Résumé

« The growing shift toward home care services assumes that ’being home is good’ and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for technology-dependent children and the moral dilemmas that this population confronts remain virtually unknown. This study explored the moral dimension of family experience through detailed accounts of life with a child who requires assisted ventilation at home. This study involved an examination of moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings, and parents and (2) everyday family life as a whole. [...]
Data analysis identified 6 principal themes. The themes raised by families whose children received ventilation invasively via a tracheostomy were not systematically different or more distressed than were families of children with face masks. The principal themes were (1) confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children’s needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was ’no free choice’ in the matter: they could not have chosen to let their child die. (2) Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of ’normal’ families. These efforts seemed motivated by a fundamental striving for a stable family and home life. This ’striving for stability’ was sometimes undermined by limitations in family finances, family cohesion, and unpredictability of the child’s condition. (3) Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child’s life is devalued, frequently referred to as a life not worth maintaining. They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. (4) Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families’ respite needs. (5) What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience. Some children described their ventilators as good things. They helped them breathe and feel better. Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving. (6) Questioning the moral order: most families questioned the ’moral order’ of their lives. They contemplated how ’good things’ and ’bad things’ are determined in their world. Parents described their life as a very unfair situation, yet there was nothing that they could do about it. Finally, an overarching phenomenon that best characterizes these families’ experiences was identified: daily living with distress and enrichment. Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming. An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise. This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without. Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and enrichments that arise out of this experience. The conundrum inherent in this situation is that there are no simple means for reconciling this tension. This irreconcilability is particularly stressful for these families. Having their child permanently institutionalized or ’disconnected’ from ventilation (and life) would eliminate both the distresses and the enrichments. These options are outside the realm of what these families could live with, aside from the 1 family whose child is now permanently hospitalized, at a tremendous cost of guilt to the family. » (pp. e48-e49)

1. Objectifs

Intentions :
« Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes,
and attending memorial services. This study explores the significance of these acts for bereaved parents. » (p. 287)

2. Méthode

Échantillon/Matériau :
« Twelve parents whose children died in the ICU of a tertiary care pediatric hospital were interviewed, to explore their experiences of the death. » (p. 287)

Instruments :
« A semistructured interview guide was then created with the intention of eliciting family experiences of the illness and subsequent death of the child. » (p. 885)

Types de traitement des données :
Analyse de contenu

3. Résumé

« Three themes emerged regarding parental experiences of staff members’ acts, ie, (1) parents placed great importance on the hospital’s memorial service and on staff members’ presence at the service; (2) parents found it difficult to return to the hospital after the child’s death but all attended the memorial service, finding some closure in the return; and (3) parents appreciated receiving cards and greatly valued staff members’ efforts to telephone/visit and to attend the funeral. Months later, parents remembered positively which staff members engaged in which activities. Conversely, parents expressed disappointment when staff members did not engage in these activities and/or were absent from memorial/funeral services. […] Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members’ absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period. » (p. 287)

1. Objectifs

Intentions :
« The purpose of this study was to enhance our understanding of how caring for a child who requires home ventilation affects family members. The specific aims were to explore the perceptions of family members caring for these children and to describe the impact on the family. » (p. 8)

2. Méthode

Échantillon/Matériau :
« The five families selected for the study had children who required a ventilator or a positive airway pressure device at home. » (p. 9)

Instruments :
Guide d’entretien

Type de traitement des données :
Analyse de contenu

3. Résumé

« Les enfants atteints de maladie chronique survivent maintenant plus longtemps grâce aux avancées de la technologie. Cette amélioration du taux de survie s’accompagne d’une augmentation du nombre de familles dispensant des soins à domicile à un enfant présentant des besoins complexes. Dans cette étude fondée sur une théorie à base empirique, nous avons exploré quel effet avait sur les proches le fait de prendre soin à la maison d’un enfant qui a besoin d’un respirateur. Ces familles vivent une expérience de lutte quotidienne. Ce combat perpétuel comporte trois dimensions distinctes: surmonter l’épreuve, se mettre à respirer et devoir affronter un événement subséquent. L’article analyse les implications de ces résultats sur le plan de la pratique et des orientations futures de la recherche des sciences infirmières. » (p. 7)