Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups

© 2015, The Author(s). Background: Patient-centered health care for children with inborn errors of metabolism (IEM) and their families is important and requires an understanding of patient experiences, needs, and priorities. IEM-specific patient groups have emerged as important voices within these rare disease communities and are uniquely positioned to contribute to this understanding. We conducted qualitative interviews with IEM patient group representatives to increase understanding of patient and family experiences, needs, and priorities and inform patient-centered research and care. Methods: We developed a sampling frame of patient groups representing IEM disease communities from Canada, the United States, and United Kingdom. With consent, we interviewed participants to explore their views on experiences, needs, and outcomes that are most important to children with IEM and their families. We analyzed the data using a qualitative descriptive approach to identify key themes and sub-themes. Results: We interviewed 18 organizational representatives between February 28 and September 17, 2014, representing 16 IEMs and/or disease categories. Twelve participants voluntarily self-identified as parents and/or were themselves patients. Three key themes emerged from the coded data: managing the uncertainty associated with raising and caring for a child with a rare disease; challenges associated with the affected child’s life transitions, and; the collective struggle for improved outcomes and interventions that rare disease communities navigate. Conclusion: Health care providers can support children with IEM and their families by acknowledging and reducing uncertainty, supporting families through children’s life transitions, and contributing to rare disease communities’ progress toward improved interventions, experiences, and outcomes.The study was partially funded by the Rare Disease Foundation (RDF). In-kind support was provided by the Canadian Inherited Metabolic Diseases Research Network (CIMDRN) which is funded by the Canadian Institutes of Health Research (CIHR, grant TR3-119197) and administered by the University of Ottawa

Rearing the Child Who is Technology Dependent: Perceptions of Parents and Home Care Nurses

ISSUES AND PURPOSE. Most children who are dependent on technology for survival live with their families at home. This study explores the perceptions of parents and home care nurses regarding rearing the technology-dependent child. DESIGN AND METHODS. In this qualitative study, interviews were conducted with 16 parents whose child is technology dependent and 15 registered nurses who provided home care. RESULTS. Rearing the child who is technology dependent is similar to but different from raising other children. Parental communication and negotiation of child-rearing expectations with home care nurses is essential. PRACTICE IMPLICATIONS. Improved collaboration and communication between parents and nurses may reduce parental stress and enhance development for children who are dependent on technology

The Society of Behavioral Sleep Medicine (SBSM) COVID-19 Task Force: Objectives and Summary Recommendations for Managing Sleep during a Pandemic

As a response to clinical observations that the pervasive stress and social/environmental disruptions from the 2020 COVID-19 pandemic have also impacted sleep, the Society of Behavioral Sleep Medicine (SBSM) convened the COVID-19 Task Force with goals to identify and disseminate information that could be useful in addressing sleep concerns during this crisis. Participants Members of the SBSM COVID-19 Task Force. Results/Conclusions Herein is a summary of the resources developed by the SBSM COVID-19 Task force, which includes links to online materials developed for use by providers and patients, as well as brief descriptions of key recommendations by the Task Force for specific sleep conditions (e.g., acute insomnia, nightmares) and vulnerable populations (e.g., parents, essential/healthcare workers, older adults).12 month embargo; published online: 13 June 2020This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]