Parents' process of recognition and response to clinical deterioration of their children with medical complexity at home: A grounded theory

AimTo develop a trigger tool for parents and lay caregivers of children with medical complexity (CMC) at home and to validate its content.DesignThis was a multi‐method study, using qualitative data, a Delphi method and a concept mapping approach.MethodsA three‐round electronic Delphi was performed from December 2021 to April 2022 with a panel of 23 expert parents and 30 healthcare providers, supplemented by a preliminary qualitative exploration of children's signs of deterioration and three consensus meetings to develop the PArents' Trigger Tool for Children with Medical Complexity (PAT‐CMC). Cognitive interviews with parents were performed to assess the comprehensiveness and comprehensibility of the tool. The COREQ checklist, the COSMIN guidelines and the CREDES guidelines guided the reporting respectively of the qualitative study, the development and content validity of the trigger tool and the Delphi study.ResultsThe PAT‐CMC was developed and its content validated to recognize clinical deterioration at home. The tool consists of 7 main clusters of items: Breathing, Heart, Devices, Behaviour, Neuro‐Muscular, Nutrition/Hydration and Other Concerns. A total of 23 triggers of deterioration were included and related to two recommendations for escalation of care, using a traffic light coding system.ConclusionPriority indicators of clinical deterioration of CMC were identified and integrated into a validated trigger tool designed for parents or other lay caregivers at home, to recognize signs of acute severe illness and initiate healthcare interventions.ImpactThe PAT‐CMC was developed to guide families in recognizing signs of deterioration in CMC and has potential for initiating an early escalation of care. This tool may also be useful to support education provided by healthcare providers to families before hospital discharge.Patient or Public ContributionParents of CMC were directly involved in the selection of relevant indicators of children's clinical deterioration and the development of the trigger tool. They were not involved in the design, conducting, reporting or dissemination plans of this research.

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Signs and symptoms of serious illness in infants aged up to 6 months: rapid review of clinical guidelines

Maramba,

Lim,

Menzies

et al. 2024

bmjpo

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BackgroundThere is a need to empower parents and carers of young infants to recognise signs of serious illness and to act on these appropriately. Compiling the signs and symptoms of serious illness in infants found in clinical guidelines will support the evidence-based update of the 30+-year-old content of the Baby Check App to empower parents and carers.ObjectiveTo systematically review clinical guidelines for signs and symptoms related to serious illness in infants aged 6 months and below.MethodsA rapid review was carried out by searching PubMed, CINAHL, NICE, Cochrane and Embase for clinical guidelines reporting signs and symptoms of serious illness in young infants. The time period was restricted from 2018 to 2023. Only guidelines published in English were included.ResultsFourteen clinical guidelines from 2307 retrieved articles were reviewed. Sixty signs and symptoms indicative of serious illness in infants were identified from the clinical guidelines. The guidelines originated from the UK (n=9, 65%), Italy (n=1, 7%), South Africa (n=1, 7%), Switzerland (n=1, 7%), USA (n=1, 7%), UK and USA (n=1, 7%). The 10 most frequent signs and symptoms were decreased consciousness, tachypnoea, looks seriously unwell to a health professional, high fever, central cyanosis, apnoea, seizures, frequent vomiting, non-blanching rash and noisy breathing.ConclusionsKnowledge of the most frequently occurring signs and symptoms that were found in the reviewed guidelines will contribute to the update of the content of the Baby Check App. This will ensure that guidance for parents and carers is consistent with the current evidence base.

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Parents' process of recognition and response to clinical deterioration of their children with medical complexity at home: A grounded theory

Cited by 5 publications

References 60 publications

Self-management education for children with epilepsy and their caregivers. A scoping review

Self-management education for children with epilepsy and their caregivers. A scoping review

Parents' Trigger Tool for Children with Medical Complexity – PAT‐CMC: Development of a recognition tool for clinical deterioration at home

Signs and symptoms of serious illness in infants aged up to 6 months: rapid review of clinical guidelines

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