Quality of life of parents of children on home parenteral nutrition

Satisfaction in Different Life Domains in Children Receiving Home Parenteral Nutrition and Their Families

“…Good QOL does not mean that patients, siblings, and parents do not experience distress and constraints because previous studies have demonstrated that these do occur in families enduring daily HPN. 17,20,23 Healthcare professionals should be aware of these problems and offer the necessary support to families providing this demanding type of care for their children.…”

“…Wong et al gave a general health questionnaire and a questionnaire developed for the British Artificial Nutrition Survey to 11 parents of children with chronic intestinal failure requiring HPN and to a control group of 11 parents of aged-matched healthy children. 23 The general health questionnaire showed that 7 of the 11 parents with children on HPN exceeded the threshold for psychiatric morbidity. There was a significant deterioration from before to after the child's diagnosis for social life, family life, sexual life, and work for these parents.…”

The Gut Microbiome in Patients with Intestinal Failure: Current Evidence and Implications for Clinical Practice

“…During the first years of life, the gut is gradually colonized, with genetics, environmental factors, diet, and the development of the immune system determining the large extent of compositional variation among individuals . The gut microbiome becomes relatively stable in adulthood, with its intraindividual variation being lower than the differences seen between different subjects . Bacteria belonging to Firmicutes and Bacteroidetes phyla dominate the gut and, to a lesser extent, species from Verrucomicrobia, Proteobacteria, and Actinobacteria (Figure ) …”

Impact of Short Bowel Syndrome on Quality of Life and Family: The Patient's Perspective

“…Many of them feel frustrated, annoyed, stressed, and have problems in sleeping. 10 Meaningful child health outcomes include not only condition-specific symptoms but also broader health concerns, such as physical, emotional, social, and school functioning. Our team previously analyzed caregivers' perception of the effect of AGIR on the lives of their child with SBS and themselves.…”

“…9 Other authors studied the quality of life of parents of children on home PN and described a significant deterioration for either social life, family life, sex life, or work in comparison with controls. 10 Our team previously analyzed caregivers' perception of the effect of autologous gastrointestinal reconstruction (AGIR) on the lives of their child with SBS and themselves, 11 using a modified version of O'Neill et al 12 questionnaire. The study concluded that AGIR improved the physical wellbeing of the children.…”