Acceptability of a Parental Early Warning Tool: Outcomes from a Feasibility Study of Parental Home Monitoring and Assessment

Abstract

Aim: to explore the feasibility and acceptability of a Congenital Heart Assessment Tool (CHAT) as part of a home monitoring programme (HMP) for parents going home with their infant between stage 1 & 2 surgery for complex CHD. Background: HMPs were developed to encourage early recognition of deterioration in infants at risk of potentially life threatening events between stage 1 & 2. In this study, the HMP was compared with the CHAT, a traffic light system enabling assessment of the infant’s condition through individualised parameters. Method: A mixed methods approach including: data collected at four time points: at discharge [T0]; 2 weeks after [T1], 8 weeks after [T2] & after stage 2 surgery [T3] using self-report tools, interviews & daily diaries. Parents were recruited between August 2013 & February 2015 & randomised to either Gp A: HMP & CHAT; Gp B: CHAT or Gp C: standard discharge care. Results: 13 mothers, 4 fathers of 13 infants consented (A =5; B =4; C =4). The time period T0 to T3 ranged from 62-228 days; all infants survived stage 1 & 2 of surgery. The qualitative data set included 38 interviews. Four themes emerged regarding the CHAT: prepared parents for the signs to look for at home; easy to use; increased parental confidence & gave them reassurance to call for advice when something was different. Themes emerging regarding the HMP: parents felt daily wt. were not needed; the scales were ‘a hindrance more than helpful’, SpO2 was more reassuring. Gp C parents described normalisation of going home & recognition that the HMP may have made them more reliant & anxious. Only 2 diaries were completed; CHAT amber triggers (n=7 occasions, no admissions); red triggers & drop in SpO2 (n=1, 1 local hospital readmission); calls to ward staff (n=13); other contact with HCP (n=7) no contacts were cardiac in origin. Conclusions: The CHAT gave parents confidence regarding changes in their infant’s condition. No early admissions for stage 2 based on trigger of CHAT or HMP