Parental involvement in decision-making about their child\u27s health care at the hospital

Aim: To explore parents\u27 experiences on parental involvement in decision-making about their child\u27s health care at the hospital and to identify how health professionals can improve parental involvement. Design: An explorative descriptive qualitative study within a constructivist research paradigm. Methods: Individual semistructured interviews were conducted with a purposive sample of 12 parents. Qualitative content analysis was performed. Results: This study gives unique insight into how parental involvement in children\u27s healthcare decisions influence parents\u27 ability to cope with the parental role at the hospital. The results showed that parents\u27 competence and perceived influence and control over their child\u27s health care appeared to affect how they mastered their role of involvement in decision-making. Individually tailored and respectful facilitation of parental involvement in these decisions by health professionals seemed to improve parents\u27 influence, control and ability to cope with the parental role. Nurses should thus strengthen parents\u27 sense of coherence enhancing the quality of health care

Health professionals\u27 involvement of parents in decision-making in interprofessional practice at the hospital

Health professionals have the responsibility of involving parents in decision-making regarding children\u27s healthcare. This is to ensure that healthcare is customised to meet children\u27s and families\u27 needs and preferences. There is inadequate knowledge about health professionals\u27 role in involving parents in these decisions in interprofessional practice in hospital settings. The aim of this study was to explore health professionals\u27 construction of the phenomenon of parental involvement in decision-making about children\u27s healthcare at the hospital and to identify how parental involvement can be improved. This explorative, descriptive qualitative study within a constructivist research paradigm selected a purposive sample of 12 health professionals who participated in individual semi-structured interviews. This qualitative data was used to construct a description of this phenomenon. The health professionals described ethical dilemmas and challenges related to parental involvement in decision-making while also providing technically safe, justifiable healthcare. Individual health professionals\u27 involvement of parents in decision-making and the intra- and interprofessional collaboration between health professionals seemed to be of great importance to increase parents\u27 active involvement in the co-production of children\u27s healthcare. Further research is required to confirm the findings for generalisation

How health professionals facilitate parents\u27 involvement in decision-making at the hospital: A parental perspective

2017, The Author(s) 2017. In many western countries, parents have a legal right to influence and be involved in decision-making (DM) surrounding their children\u27s healthcare. This ensures that the healthcare is customized as far as possible to meet the children\u27s and families\u27 needs and preferences. However, parental involvement in such DM is not sufficiently implemented and the parental role during hospitalizations has become demanding. More knowledge is required to inform health professionals (HPs) about how to improve parental involvement in DM from a health-promoting perspective. The aims of this study were to explore parents\u27 experiences of how HPs facilitate their involvement in the DM surrounding their child\u27s healthcare and to identify how HPs can improve parental involvement at the hospital. This was an explorative, descriptive qualitative study within a constructivist research paradigm, comprising a purposive sample of 12 parents participating in individual semi-structured interviews. Qualitative content analysis was performed. The findings showed that HPs\u27 sensitivity to parents\u27 capacity, resources and needs was essential in order to facilitate the latter\u27s involvement in DM. HPs\u27 sensitivity also seemed to influence the quality of communication and the HP-parent relationship. Moreover, these factors appeared to affect parents\u27 coping ability during their children\u27s hospitalization

TTC7A mutations disrupt intestinal epithelial apicobasal polarity

Multiple intestinal atresia (MIA) is a rare cause of bowel obstruction that is sometimes associated with a combined immunodeficiency (CID), leading to increased susceptibility to infections. The factors underlying this rare disease are poorly understood. We characterized the immunological and intestinal features of 6 unrelated MIA-CID patients. All patients displayed a profound, generalized lymphocytopenia, with few lymphocytes present in the lymph nodes. The thymus was hypoplastic and exhibited an abnormal distribution of epithelial cells. Patients also had profound disruption of the epithelial barrier along the entire gastrointestinal tract. Using linkage analysis and whole-exome sequencing, we identified 10 mutations in tetratricopeptide repeat domain–7A (TTC7A), all of which potentially abrogate TTC7A expression. Intestinal organoid cultures from patient biopsies displayed an inversion of apicobasal polarity of the epithelial cells that was normalized by pharmacological inhibition of Rho kinase. Our data indicate that TTC7A deficiency results in increased Rho kinase activity, which disrupts polarity, growth, and differentiation of intestinal epithelial cells, and which impairs immune cell homeostasis, thereby promoting MIA-CID development