Research graph
References from Filling the gaps: Information sources and needs of patients with intestinal failure and their caregivers. Local targets link to admitted publications; unresolved targets remain external evidence.
Impact on caregivers of adult patients receiving parenteral support for short-bowel syndrome with intestinal failure: A multinational, cross-sectional survey
10.1002/jpen.2248 · 2022 · External reference
Carrying the Burden: Informal Care Requirements by Caregivers of Children with Intestinal Failure Receiving Home Parenteral Nutrition
10.1016/j.jpeds.2022.05.049 · 2022 · External reference
10.1002/ncp.11008
10.1002/ncp.11008 · External reference
Health information—seeking behavior
10.1177/1049732307305199 · 2007 · External reference
Uncertainty in chronic illness
10.1891/0739-6686.17.1.269 · 1999 · External reference
Health Information Seeking as a Coping Strategy to Reduce Alzheimer’s Caregivers’ Stress
10.1080/10410236.2020.1824665 · 2022 · External reference
Assessing the significance of health information seeking in chronic condition management
10.1016/j.pec.2017.03.012 · 2017 · External reference
Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases
2022 · External reference
A scoping review of health literacy in rare disorders: key issues and research directions
10.1186/s13023-024-03332-5 · 2024 · External reference
Improving Health Information for Rare Disease Patients and Caregivers: A Survey of Preferences for Health Information Seeking Channels and Formats
10.1080/15323269.2023.2194808 · 2023 · External reference
Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review
2025 · External reference
Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community
10.2196/41610 · 2023 · External reference
Unresolved reference
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Exploring Informational Needs of Parents of Children with Intestinal Failure: A Thematic Analysis
2021 · External reference
Caregiver Decision-making in Pediatric Intestinal Failure
10.1097/mpg.0000000000002979 · 2021 · External reference
Short bowel syndrome–associated intestinal failure patient experience: A mixed-method study leveraging an online patient community
10.1002/ncp.70002 · 2025 · External reference
A scoping review of health literacy in rare disorders: key issues and research directions
10.1186/s13023-024-03332-5 · 2024 · External reference
Health Information Seeking and Its Achievements in Patients With Chronic Disease
10.1016/j.nurpra.2021.12.024 · 2022 · External reference
How clinician-patient communication affects trust in health information sources: Temporal trends from a national cross-sectional survey
10.1371/journal.pone.0247583 · 2021 · External reference
Communication and Cybercoping: Coping With Chronic Illness Through Communicative Action in Online Support Networks
10.1080/10810730.2013.864724 · 2014 · External reference
Cyber-support: an analysis of online self-help forums (online self-help forums in bipolar disorder)
10.3109/08039488.2012.700734 · 2013 · External reference
The effect of computer-mediated social support in online communities on patient empowerment and doctor-patient communication
10.1080/10410236.2011.567449 · 2012 · External reference
How do online patient support communities affect the experience of inflammatory bowel disease? An online survey
10.1177/2042533313478004 · 2013 · External reference
Prevalence of Health Misinformation on Social Media: Systematic Review
10.2196/17187 · 2021 · External reference
Patient and family social media use surrounding a novel treatment for a rare genetic disease: a qualitative interview study
10.1038/s41436-020-0890-6 · 2020 · External reference
Better Understand Rare Disease Patients’ Needs by Analyzing Social Media Data – a Case Study of Cystic Fibrosis
10.1109/bibm52615.2021.9669842 · 2021 · External reference
Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases
2024 · External reference
Access to Information Cited in National Organization for Rare Disorders Reports
10.1001/jamanetworkopen.2025.11758 · 2025 · External reference
Open to the public: paywalls and the public rationale for open access medical research publishing
10.1186/s40900-020-0182-y · 2020 · External reference
Lay summaries of open access journal articles: engaging with the general public on medical research
10.1087/20140303 · 2014 · External reference
The Importance of Lay Summaries for Improving Science Communication
10.1093/abm/kaad027 · 2023 · External reference
Value of Developing Plain Language Summaries of Scientific and Clinical Articles: A Survey of Patients and Physicians
10.1177/2168479017738723 · 2018 · External reference
Intestinal failure in adults: Recommendations from the ESPEN expert groups
10.1016/j.clnu.2018.07.036 · 2018 · External reference
Unresolved reference
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Unresolved reference
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Knowledge of chronic intestinal failure among US gastroenterologists: Cause for concern and learning opportunity
10.1002/jpen.2283 · 2022 · External reference
Unresolved reference
External reference
Chronic illness: the process of integration
10.1111/j.1365-2702.2007.02244.x · 2008 · External reference
Self-management approaches for people with chronic conditions: a review
10.1016/s0738-3991(02)00032-0 · 2002 · External reference
Written educational materials for families of chronically ill children
10.1111/j.1745-7599.2007.00254.x · 2007 · External reference
Integrated Digital Patient Education at the Bedside for Patients with Chronic Conditions: Observational Study
10.2196/22947 · 2020 · External reference
Evidence Suggesting That a Chronic Disease Self-Management Program Can Improve Health Status While Reducing Hospitalization: A Randomized Trial
10.1097/00005650-199901000-00003 · 1999 · External reference
Patients’ perspectives on digital health tools
10.1016/j.pecinn.2023.100171 · 2023 · External reference
Stress, Anxiety, Depression and Health-Related Quality of Life in Caregivers of Children with Intestinal Failure on Parenteral Nutrition: A Cross-sectional Survey Study
2022 · External reference
Overview of Physical, Neurocognitive, and Psychosocial Outcomes in Pediatric Intestinal Failure and Transplantation
10.1007/s11894-022-00848-3 · 2022 · External reference
Caregiver perspectives on barriers and facilitators to pediatric intestinal failure quality of life
2025 · External reference
Tracking Anxiety in Chronic Intestinal Failure: The Role of Time in Healing
10.3390/healthcare13192503 · 2025 · External reference
Clinical, social, and economic impacts of home parenteral nutrition dependence in short bowel syndrome
2014 · External reference
Identifying patients with benign chronic intestinal failure on home parenteral nutrition in whom a psychological support intervention may improve quality of life
10.1016/j.clnesp.2020.12.026 · 2021 · External reference
Designing and delivering facilitated storytelling interventions for chronic disease self-management: a scoping review
10.1186/s12913-016-1474-7 · 2016 · External reference
Social support is associated with fewer reported symptoms and decreased treatment burden in adults with cystic fibrosis
10.1016/j.jcf.2019.01.013 · 2019 · External reference
Perceived Social Support and Psychological Well-Being in Patients with Chronic Diseases
2023 · External reference
Prevalence of depression and anxiety, and their relationship to social support among patients and family caregivers of rare bone diseases
10.1186/s13023-022-02611-3 · 2023 · External reference
Quality of Life in Six Words: An Arts- and Narrative-Based Approach for Centering Patient Voices in a Health Care Education Session
2022 · External reference
Characteristics of chronic intestinal failure in the USA based on analysis of claims data
10.1002/jpen.2426 · 2022 · External reference
Survey of healthcare professionals’ experiences of care delivery in patients with chronic intestinal failure: ATLAS of Variance
10.1016/j.clnesp.2023.01.017 · 2023 · External reference
Management of short-bowel syndrome: A survey of unmet educational needs among healthcare providers
10.1002/jpen.2388 · 2022 · External reference
Role of Health Literacy in Health-Related Information-Seeking Behavior Online: Cross-sectional Study
10.2196/14088 · 2021 · External reference
Determinants of Consumer eHealth Information Seeking Behavior
2015 · External reference
