Family Activation Study
Research type
Research Study
Full title
Development of a Paediatric Rapid Response Family Activation Application at a tertiary healthcare organisation.
IRAS ID
314465
Contact name
Nicola Taylor
Contact email
Sponsor organisation
Nottingham University Hospital
Duration of Study in the UK
0 years, 6 months, 26 days
Research summary
"Research Summary"
At least 85% of unplanned admissions to children and young people (CYP) critical care wards are associated with clinical deterioration. Evidence from the USA and Australia suggests that CYP and their families play an integral part in the recognition of deterioration. It is intuitive to think that families (parents/carers) have knowledge of the patient and their norms, and may sense whether the patient’s clinical condition is deteriorating. This has been well documented in paediatric deterioration where parents and carers recognised signs that the patient was deteriorating before healthcare-staff. This is especially true for CYP with complex health needs that have altered normal physiology, where subtle changes are hard for the healthcare worker to detect. At NCH the Paediatric Critical Care Outreach Team (PCCOT) supports the reduction of avoidable harm through earlier recognition and treatment of the deteriorating child, acting as a welcome conduit between the multi-professional teams, helping ensure CYP get the right care, at the right time and in the right place. This positions PCCOT well to respond to families who call for help as part of family activation.
In view of the important role families can play in contributing to the early recognition of their child’s clinical deterioration, this study aims to develop a mechanism by which a family member (parents/carers) can escalate their concerns directly to PCCOT. We aim to develop a family activation online application (app) to achieve this purpose. The objective is to enable a rapid response to family concerns and initiate timely rescue interventions as required. The aim is not to bypass, or stifle, normal communication pathways, but to add a safety net for those times when communication has broken down and family feel that their concerns have not been heard.
"Summary of results"
Study Plain English Summary What is the problem?
For children and young people admitted to the hospital, delays in noticing and providing appropriate treatment in circumstances their condition worsens can sometimes result in harm. Parents/ carers can often realise changes in the child's condition before healthcare professionals (HCP). To reduce the risk of undesirable results and promote early treatment, having a process in place allowing families to raise concerns is part of including families in the delivery and planning of care for the patient. Options for parents/carers to raise concerns regarding their child's clinical condition remain limited to direct verbal communication, which may prevent those with communication challenges from raising their concerns. To address this problem we developed a digital multi-lingual web-based application (app) that families/carers can use to raise their concerns directly to the emergency medical team looking after the child (1).
What we did
The study was conducted at one hospital site to design and develop the app together with parents/ carers and healthcare professionals. Evidence from previous research studies (2) informed interview and focus group questions with participants. Participant recruitment targeted underserved communities for multi-lingual functionality. Data was analysed using qualitative content analysis.
What did we observe?
Thirty parents/carers (n=16) and HCPs (n=14) participated in the study. Three themes were generated from the data analysis; (i) Relational considerations; communication, professional and parental attributes, and collaborative working, (ii) Technology considerations; app content, usage and outcomes, and (iii) Individual and environmental considerations; parental and professional elements, and workload. A family activation app prototype was developed to allow parents/ carers to raise concerns to the children's emergency care team.
The app provides an approach to paediatric family-activated rapid response that acknowledges cultural aspects and preferences, ensuring that parents/ carers can communicate in a manner that aligns with their cultural background and communication abilities, thereby enhancing the quality of care delivered.
1. Marufu, T.C., Taylor, N., Fox, S.C., Boardman, R. and Manning, J.C. (2023). Paediatric family activation rapid response (FARR) in tertiary healthcare organisations: Protocol for an online, multi-lingual, application (app) intervention development study. BMC Pediatr 23, 297. https://scanmail.trustwave.com/?c=261&d=x6es5iYGAfhwcyQEjlj_0dxkVXl0J6WvzF-MMyS4GA&u=https%3a%2f%2fclick%2epstmrk%2eit%2f3ts%2fdoi%2eorg%252F10%2e1186%252Fs12887-023-04123-w7%2e%2fNBTI%2fgJu2AQ%2fAQ%2f91f883eb-8099-4feb-bf15-646bc10175f1%2f2%2fWHB5j2TLXX2. Cresham Fox, S., Taylor, N., Marufu, T. C., Hendron, E., & Manning, J. C. (2023). Paediatric family activated rapid response interventions; qualitative systematic review. Intensive & critical care nursing, 75, 103363. https://scanmail.trustwave.com/?c=261&d=x6es5iYGAfhwcyQEjlj_0dxkVXl0J6WvzAyOMXa6QA&u=https%3a%2f%2fclick%2epstmrk%2eit%2f3ts%2fdoi%2eorg%252F10%2e1016%252Fj%2eiccn%2e2022%2e103363%2fNBTI%2fgJu2AQ%2fAQ%2f91f883eb-8099-4feb-bf15-646bc10175f1%2f3%2fVLom-ZA4zY
REC name
Wales REC 2
REC reference
22/WA/0174
Date of REC Opinion
15 Jun 2022
REC opinion
Favourable Opinion