ArticleBMJ paediatrics open2023
Understanding parents' experiences of care for children with medical complexity in England: a qualitative study.
Article in BMJ paediatrics open, 2023. 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 12 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
12 citing papers in PubMed, 2 syntheses or guidelines pooled it, 27 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
- 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
- Caregiver Perspectives on Implementation of Discharge Plans for Children With Medical Complexity.Hospital pediatrics · 2026Article
- Unseen, Unrelenting, and Uncertain: Caregiver-Identified Targets For Pediatric Palliative Care.Journal of pain and symptom management · 2026Article
- "Rolling the Boulder Up the Hill": A Qualitative Study of Parents' Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs.The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres · 2026Article
- Parents' experiences of condition management in children born with esophageal atresia-tracheoesophageal fistula during their early childhood.Orphanet journal of rare diseases · 2026Article
- Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study.Children (Basel, Switzerland) · 2026Article
- Parents' experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study.BMC palliative care · 2025Article
- Qualitative evaluation of a hospital-inpatient service for children with medical complexity.BMJ paediatrics open · 2025Article
- Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses.Journal of patient-reported outcomes · 2025Article
- Amplifying voices: The transformative power of voice and voice economy.African journal of disability · 2025Article
- Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure.BMC palliative care · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 2 institutions in 2 countries.
Funding
Abstract
objectivesTo understand parents' experiences of receiving care for their child with medical complexity.
designQualitative semi-structured interviews with parents of children with medical complexities across England analysed using reflexive thematic analysis.
resultsTwenty parents from four hospital sites in England took part in the study, a total of 17 interviews were completed, 3 joint and 14 single parent interviews. Four themes were developed: parents feel abandoned; continuity of care (made up of three subthemes); equipment barriers; and charities fill the gaps.
conclusionsThe perceived quality of healthcare provided to this population was found to be inconsistent, positive examples referred to continuity of care; communication, clinical management and long-lasting relationships. However, many experienced challenges when receiving care for their children; many of these challenges have been highlighted over the past two to three decades but despite the children's needs becoming more complex, little progress appears to have been made. Parents were seen as adopting significant additional roles beyond being a parent, but they still find themselves left without support across all areas. These families require more structured support. Policy makers and commissioners need to prioritise the needs of families to enable health and social care services to provide the support required.
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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.