ArticleHealth expectations : an international journal of public participation in health care and health policy2020
The challenges of caring for children who require complex medical care at home: 'The go between for everyone is the parent and as the parent that's an awful lot of responsibility'.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07102433 (CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions), which is not on this map. Cited by 71 papers, 5 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions: Establishing a Multisectoral Collaboration and Conceptual Framework to Advance Evidence and Practice.
Who cites it
71 citing papers in PubMed, 5 syntheses or guidelines pooled it, 150 citations in OpenAlex.
- Disruptions to safety and adaptations experienced by parents and caregivers who administered prescribed medicines to children at home: a systematic review using a framework synthesis.Frontiers in health services · 2026Pooled it
- Care of Infants and Children with Tracheostomies: An Official American Thoracic Society Clinical Practice Guideline.American journal of respiratory and critical care medicine · 2025Guideline
- Family Caregivers' Experiences of Services for Children With Medical Complexity: A Systematic Review and Qualitative Evidence Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Case Management for Enhancing Wellbeing, Resilience, and Quality of Life in Caregivers of Children and Adolescents With Chronic Illnesses and Disabilities: A Systematic Review and Meta-Analysis.Nursing & health sciences · 2025Pooled it
- A Systematic Review of Methods Used by Pediatric Cost-Utility Analyses to Include Family Spillover Effects.PharmacoEconomics · 2024Pooled it
- The impact of the Indiana Complex Care Coordination Collaborative (IC4) on caregivers of children with complex medical conditions.BMC pediatrics · 2026Article
- Telehealth by Home Monitoring and Video Consultation for Children With Cystic Fibrosis: Qualitative and Quantitative Study.JMIR formative research · 2026Article
- "What's in It for the Kid?": An Approach for the Bedside Ethicist.Children (Basel, Switzerland) · 2026Article
- Time poverty of families of children with 22q11DS: a healthcare professional perspective.BMC pediatrics · 2026Article
- "It's just us": Families' experiences with temporary tube feeding.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2026Article
- Coping Strategies and Sense of Care Among Parents of Children Affected by Sturge-Weber Syndrome: A Cross-Sectional Study.Nursing reports (Pavia, Italy) · 2026Article
- Towards an Integrated Framework for Health Surveillance Systems: A Systematic Literature Review of Design Components and Implementation Challenges.Health science reports · 2026Review
- Early Impact of a Co-Designed Playgroup for Children With Medical Complexity: A Mixed Methods Pilot Study.Journal of patient experience · 2026Article
- The relationship between health literacy and satisfaction with medical care in parents of children with chronic gastrointestinal diseases.Frontiers in public health · 2026Article
- Clinical Dietitians' Perspectives on Nutritional Management in Children's Palliative Care: A Qualitative Study.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2025Article
- Associations Between Care Environments and Environmental Modifications in the Daily Living Settings of Children with Medical Complexity.Nursing reports (Pavia, Italy) · 2025Article
- Out of Sync? Rare Genetic Disease and the Chronopolitics of Care.Sociology of health & illness · 2025Article
- Factors influencing the family management of children with atopic dermatitis: an integrative review.Child health nursing research · 2025Article
- The Impact of COronaVIrus Disease of 2019 Pandemic on Home Health Nursing Availability in Pediatric Patients After Tracheostomy Placement.Pediatric pulmonology · 2025Article
- Mapping Perceived Impact, Facilitators and Barriers of Cystic Fibrosis Management in Children and Adolescents: A Qualitative Study From the Parents' Perspective.Scandinavian journal of caring sciences · 2025Article
11 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
backgroundIncreasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.
methodsWe conducted a thematic analysis of eleven in-depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life.
resultsWe identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life-threatening), co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. DISCUSSION: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health-care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.