Eating difficulties in girls with Rett syndrome compared with other developmental disabilities
Nutrition & Dietetics; feeding difficulties; Rett syndrome; trajectory; characteristics; feeding skills; irregular breathing problems
Rett syndrome arises from a mutation on the X chromosome and occurs with prevalence in the general population in 1:10,000 women. Its major nutritional consequences require that health providers recognize early signs of eating difficulties and slowing of growth parameters, Retrospective record review of 44 girls, in two equal-sized groups matched by age, showed that the Rett syndrome group was significantly different, with lower body weights, more respiratory difficulties, more gastrointestinal symptoms interfering with eating, more swallowing problems, less self-feeding, and lower texture tolerance for chewy and crunchy foods compared with the developmental disability group. Microcephaly was noted for half of the Rett, syndrome group compared with seven in the developmental disability group. Parents expressed concern about their child's difficulties in eating; eight of the Rett syndrome girls and 13 of the girls in the developmental disability group were reported to have a poor appetite. Distinctive features of Rett syndrome consistent with those in the literature were documented reasonably well in the nutrition assessment records. Detailed food intake information was analyzed for food texture characteristics to recognize early eating and texture tolerance problems. Recommendations were offered for conducting a thorough nutrition assessment of Rett syndrome patients, including analysis of the texture of consumed foods. Additional recommendations for improving nutrition services to those with Rett syndrome and other developmental disabilities include ruling out microcephaly, early identification of eating difficulties, with modifications in food texture as appropriate, and self-feeding goals.
Isaacs J S; Murdock A; Lane J; Percy A K
Journal of the American Dietetic Association
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1053/jada.2003.50026" target="_blank" rel="noreferrer noopener">10.1053/jada.2003.50026</a>
Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)
mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation.
Thienprayoon R; Lane J; Grossoehme D
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.147</a>