Franco A. Carnevale

An open letter to The BMJ editors on qualitative research

Seventy six senior academics from 11 countries invite The BMJ ’s editors to reconsider their policy of rejecting qualitative research on the grounds of low priority. They challenge the journal to develop a proactive, scholarly, and pluralist approach to research that aligns with its stated mission

Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec.

Objective: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents, relative to physicians, in relation to treatment decisions for critically ill children. Anglo-American settings have adopted decision-making models where parents are regarded as responsible for such life-support decisions, while in France physicians are commonly considered the decision makers. Design: Grounded theory qualitative methodology. Setting: Four pediatric intensive care units (two in France and two in Quebec, Canada). Patients: Thirty-one parents of critically ill children; nine physicians and 13 nurses who cared for their children. Interventions: None. Measurements and Main Results: Semistructured interviews were conducted. In France, physicians were predominantly the decision makers for treatment decisions. In Quebec, decisional authority practices were more varied; parents were the most common decision maker, but sometimes it was physicians, while for some decisional responsibility depended on the type of decision to be made. French parents appeared more satisfied with their communication and relationship experiences than Quebec parents. French parents referred primarily to the importance of the quality of communication rather than decisional authority. There was no relationship between parents’ actual responsibility for decisions and their subsequent guilt experience. Conclusions: It was remarkable that a certain degree of medical paternalism was unavoidable, regardless of the legal and ethical norms that were in place. This may not necessarily harm parents’ moral experiences. Further research is required to examine parental decisional experience in other pediatric settings.

An item analysis of the COMFORT scale in a pediatric intensive care unit.

Objective The objective of this study was to conduct an item analysis of the COMFORT scale within a sample of critically ill children. The COMFORT scale is a tool that measures eight clinical parameters at the bedside to determine a critically ill child’s level of distress. However, documentation of the reliability and validity of specific components of this instrument has been limited to date. Design This was an observational study. Setting A tertiary care pediatric intensive care unit. Patients A sample of 18 intubated, mechanically ventilated patients. Interventions None. Measurements and Main Results An item analysis of the COMFORT scale was conducted. The scale was used for variable intervals with each child, providing a total of 514 individual completed ratings. These ratings were then submitted to descriptive, correlational, factor, and regression analyses using the Statistical Package for the Social Sciences. The principal finding of this item analysis was that 97% of the total score variance was explained by six of the eight items. In particular, it was remarkable that heart rate and blood pressure demonstrated very limited reliability and validity as determinants of the total COMFORT score. As well, the clinical experience of the investigators with this scale has demonstrated that these two items can be cumbersome to use, given that these parameters are often affected by hemodynamic factors. Conclusions On the basis of these findings, we propose a modified COMFORT scale based on a six-item scoring system. This modified scale would provide a more reliable and valid measure for research as well as clinical purposes, by eliminating two parameters that can be affected by factors other than the child’s level of distress.

Using participant observation in pediatric health care settings: ethical challenges and solutions

Participant observation strategies may be particularly effective for research involving children and their families in health care settings. These techniques, commonly used in ethnography and grounded theory, can elicit data and foster insights more readily than other research approaches, such as structured interviews or quantitative methods. This article outlines recommendations for the ethical conduct of participant observation in pediatric health care settings. This involves a brief overview of the significant contributions that participant observation can bring to our understanding of children and families in health care settings; an examination of the elements of participant observation that are necessary conditions for its effective conduct; an outline of contemporary ethical norms in Canada, the United Kingdom and the United States for research in pediatric health care settings; and a discussion of how participant observation research should be operationalized in order to comply with these norms.

“This is my way”: reimagining disability, in/dependence and interconnectedness of persons and assistive technologies

Purpose: Postmodernism provides a radical alternative to the dominant discourses of Western societies that emphasize autonomy and independence. It suggests a reimagining of the relationship between the self and the body and the increasingly blurred boundaries between biology and machine. The purpose of this article is to explore in/dependence through a discussion of interconnectedness of persons and assistive technologies. Key messages: Drawing on postmodern theories, we discuss the interconnections inherent in disability experiences through the case example of Mimi, an adolescent girl with severe physical disabilities. We consider how Mimi, her assistive technologies and her parents can be viewed as assemblages of bodies/technologies/subjectivities that together achieve a set of practices. An examination of these various couplings suggests different understandings of disability that open up possibilities for multiple connections and reimagines dependencies as connectivities. Conclusions: Connectivity can be embraced to explore multiple ways of being-in-the-world for all persons and problematizes the goals of independence inherent in rehabilitation practices. Implications for Rehabilitation “Dependency” has a negative social connotation that is challenged by postmodern ideas of dynamic connectivity. Connectivity offers an alternative lens for conceptualizing relationships between disabled people, their technologies and caregivers. Connectivity suggests a rethinking the goals of independence inherent in rehabilitation practices.

The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France

The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear such responsibilities because they do not have the required knowledge and should be protected from feeling culpable for such decisions. The aim of this grounded theory preliminary study was to examine the moral experience of parents of critically-ill children that required life-support decisions in France. A convenience purposive sample of seven parents was recruited in Paris. Five principal themes emerged as significant from these interviews: (1) a need for more information; (2) physicians should be responsible for life-support decisions; (3) the childs concerns and wishes need to be better heard; (4) maternal guilt; and (5) physicians require better training in parent communication. These findings raise important issues for clinical practice and further research in France.

A description of stressors and coping strategies among parents of critically ill children—a preliminary study

The purpose of this preliminary study was to describe (1) perceived stressors and (2) coping strategies among parents of critically ill children. Stress and coping within this population has been subjected to little research. The research that has been reported is predominantly quantitative. The validity of this research is unclear. Five parents of children in a pediatric intensive care unit (PICU) setting were interviewed. They were asked to describe the principal sources of stress (stressors) they encountered and how they dealt with these (coping strategies). The interviews were content analysed. Five categories of stressors were identified. These included parental role conflict, concern for child, environment, friends, and childs siblings. Five categories of coping strategies were identified. These included things you think about, actions directed toward other people, drawing on support from others, things you do, and things you draw on from the environment. The findings of this study have highlighted deficiencies within the existing literature on stress and coping within this population. There is a need for further qualitative research in this area. This will foster the development of a better understanding of the experience of parents for caregivers and provide a foundation for further research.

What we know (and do not know) about raising children with complex continuing care needs.

ventilators and nutrition systems allow many children to survive diseases and injuries previously considered fatal. Most are cared for in their homes, where they are cherished members of their families. These children have complex continuing care needs that stem from multi-organ system involvement and cognitive and/or developmental problems. Incidence and prevalence rates are unknown because different terms are used to classify this small but growing pediatric population. Each of us has conducted research with these families in Canada, the US and UK respectively. Although these countries have different models of health and social service provision, our findings are similar. Our combined findings corroborate those of other researchers, indicating that radically new forms of childhood, parenthood and family life have been created, but are poorly understood. We know that these children commonly receive sub-optimal long-term care because they ‘fall between the cracks’ due to ambiguous categories, exclusionary criteria or service gaps. Nevertheless, most parents emphasize the important benefits that they derive from raising them and the enhancements they make to family life. However, daily life is extremely constrained also by extraordinary physical, psychological, social and financial challenges. EDITORIAL

Revisiting Goffman’s Stigma: the social experience of families with children requiring mechanical ventilation at home

This article argues for a sociologically grounded theoretical orientation for the study of selected health phenomena. Erving Goffman’s theory of stigma provides a framework for better understanding the social dimension of the lives of disabled children and their families. First, the principal tenets of this theory are reviewed. Then, the findings from a study of the moral experience of families with children requiring mechanical ventilation at home are re-examined in light of Goffman’s Stigma. This analysis highlights how a sociological framework can help advance our understanding of medical problems as social problems and shed light on socialization processes that can help resolve the discrediting, isolation and distress lived by disabled children and their families.

The interpretation of systematic reviews with meta-analyses: an objective or subjective process?

BackgroundDiscrepancies between the conclusions of different meta-analyses (quantitative syntheses of systematic reviews) are often ascribed to methodological differences. The objective of this study was to determine the discordance in interpretations when meta-analysts are presented with identical data.MethodsWe searched the literature for all randomized clinical trials (RCT) and review articles on the efficacy of intravenous magnesium in the early post-myocardial infarction period. We organized the articles chronologically and grouped them in packages. The first package included the first RCT, and a summary of the review articles published prior to first RCT. The second package contained the second and third RCT, a meta-analysis based on the data, and a summary of all review articles published prior to the third RCT. Similar packages were created for the 5th RCT, 10th RCT, 20th RCT and 23rd RCT (all articles). We presented the packages one at a time to eight different reviewers and asked them to answer three clinical questions after each package based solely on the information provided. The clinical questions included whether 1) they believed magnesium is now proven beneficial, 2) they believed magnesium will eventually be proven to be beneficial, and 3) they would recommend its use at this time.ResultsThere was considerable disagreement among the reviewers for each package, and for each question. The discrepancies increased when the heterogeneity of the data increased. In addition, some reviewers became more sceptical of the effectiveness of magnesium over time, and some reviewers became less sceptical.ConclusionThe interpretation of the results of systematic reviews with meta-analyses includes a subjective component that can lead to discordant conclusions that are independent of the methodology used to obtain or analyse the data.