OBJECTIVE. 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. METHODS. A qualitative method based on Richard Zaner's interpretive framework was selected for this study. The population of interest for this study was the families of children who are supported by a ventilator or a positive-pressure device at home. Twelve families (38 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. Children in the study population fell into 4 diagnostic groups: (1) abnormal ventilatory control (eg, central hypoventilation syndrome), (2) neuromuscular disorders, (3) spina bifida, and (4) craniofacial or airway abnormalities resulting in upper airway obstruction. All 4 of these diagnostic groups were included in this study. Among the 12 children recruited, 4 received ventilation via tracheostomies, and 8 received ventilation with face masks. All of the latter received ventilation only at night, except for 1 child, who received ventilation 24 hours a day. Family moral experiences were investigated using semistructured interviews and fieldwork observations conducted in the families' homes. RESULTS. 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. CONCLUSIONS. These findings make important contributions by (1) advancing our understanding of the moral experiences of this group of families; (2) speaking to the larger context of other technology-dependent children who require home care; (3) relating home care experiences to neonatal, critical care, and other hospital services, suggesting that these settings examine their approaches to this population that may impose preventable burdens on the lives of these children and their families; and (4) examining a moral problem with an empirical method. Such problems are typically investigated through conceptual analyses, without directly examining lived experience. These findings advance our thinking about how we ought to care for these children, through a better understanding of what it is like to care for them and the corresponding major distresses and rewarding enrichments. These findings call for an increased sensitization to the needs of this population among staff in critical care, acute, and community settings. Integrated community support services are required to help counter the significant distress endured by these families. Additional research is required to examine the experience of other families who have decided either not to bring home their child who requires ventilation or withdraw ventilation and let the child die.

Post Intensive Care Syndrome in pediatrics will help illuminate the phenomena of surviving childhood critical illness and guide outcomes measurement in the field. Empirical studies are now required to validate and refine this framework, and to subsequently develop a set of core outcomes for this population. With explication of Post Intensive Care Syndrome in pediatrics, the discipline of pediatric critical care will then be in a stronger position to map out recovery after pediatric critical illness and to evaluate interventions designed to mitigate risk for poor outcomes with the goal of optimizing child and family health.

Children hospitalized in pediatric intensive care units (PICUs) are subjected to highly invasive interventions necessary in overcoming the critical period of their illness, yet little is known about their subsequent psychological adjustment. The purposes of this study were to compare the psychological responses of children hospitalized in a PICU with those of children hospitalized on a general ward and to identify clinically relevant factors that might be associated with psychological outcome. A prospective cohort design was used to follow 120 children for 6 months after PICU and ward discharge. Groups were compared on the children's sense of control over their health, their medical fears, posttraumatic stress, and changes in behavior. Relationships between children's responses and their age, the invasive procedures to which they were exposed, severity of illness, and length of hospital stay were also examined. No significant group differences were found. However, children who were younger, more severely ill, and who endured more invasive procedures had significantly more medical fears, a lower sense of control over their health, and ongoing posttraumatic stress responses for 6 months postdischarge. Findings indicate that regardless of the hospital setting, invasiveness coupled with length of stay and severity of illness in young children may have adverse long-term effects.

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A systematic review of published research on children's psychological outcomes following Pediatric Intensive Care Unit (PICU) hospitalization was conducted. Of the 275 papers published between 1970 and April 2008 which were identified using keywords, reference lists and one author's collections, a total of 28 papers met the inclusion criteria for this review. The papers fell into four categories based on the focus of the research: (1) children's PICU perceptions and recall; (2) children's psychological outcomes, broadly defined; (3) post-traumatic stress responses; and (4) general health status and quality of life. The findings suggest that PICU hospitalization can result in negative psychological sequelae in children, which can manifest themselves up to one year post-discharge. While a small number of studies have attempted to identify predictors of psychological outcome, this work remains in its infancy. The importance of the child's interpretation of the illness experience in influencing subsequent behavioral and emotional responses is highlighted.

The objective of this systematic review was to identify questionnaires that measure health-related empowerment in adults or families and demonstrated the best evidence of reliability and validity. A search of nine data bases identified 8,269 abstracts that referred to empowerment. Full article review was completed for abstracts that met the inclusion criteria or that could not be excluded with certainty (n = 124). Fifty distinct, modified, or translated questionnaires measuring empowerment were identified in 74 articles. Each was rated in terms of reliability and validity. One questionnaire had good evidence of reliability and validity, four had moderate evidence, and 45 had limited or no evidence. Limited or no evidence for reliability and validity for many questionnaires could relate in part to lack of consensus on the theoretical definition of, and indicators for measuring empowerment. We recommend that researchers use the questionnaire rated as having good evidence and that data on reliability and validity continue to be reported for other questionnaires.

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.

Findings suggest there is a group of children in the pediatric intensive care unit who are at higher risk for developing persistent psychological sequelae postdischarge. Exposure to high numbers of invasive procedures may be the driving force behind group differences, particularly at 6 wks postdischarge. These children warrant closer observation and follow-up.