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Children and young people's versus parents' responses in an English national inpatient survey
Dougal S Hargreaves1,2, Steve Sizmur3, Jacqueline Pitchforth1
1Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK.
Insights
Including children and young people (CYP) in patient experience surveys is feasible. Their input provides unique insights, particularly on safety and involvement, that parents may not report.
Area of Science:
- Healthcare research
- Pediatric health services research
- Patient experience measurement
Background:
- Children and young people's (CYP) perspectives are often excluded from healthcare surveys.
- Existing patient experience surveys may not fully capture the nuances of pediatric hospital admissions.
Purpose of the Study:
- To assess the feasibility of measuring the healthcare experiences of children and young people (aged 8-15 years) during hospital admissions.
- To determine the additional value of CYP-reported data compared to parent/carer reports.
Main Methods:
- Cross-sectional analysis of national survey data from inpatients aged 8-15 years.
- Survey data collected from CYP, parents/carers, or jointly.
- Statistical analysis included intraclass correlations (ICCs) for response concordance and multilevel logistic regression.
Main Results:
- The CYP section of the survey was completed independently by 57.8% of participants.
- Reasonable agreement between CYP and parent responses for pain relief and overall experience.
- Lower agreement on communication quality; CYP reported lower rates of feeling safe, involvement, and privacy compared to parents.
Conclusions:
- Incorporating children and young people (aged 8-15) into patient experience surveys is feasible.
- CYP-reported data offers valuable, distinct information beyond parental perspectives.
- This approach enhances the understanding of pediatric patient experiences in healthcare settings.
Objective:
Despite growing interest in children and young people's (CYP) perspectives on healthcare, they continue to be excluded from many patient experience surveys. This study investigated the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission.
Design:
Cross-sectional analysis of national survey data.
Setting:
Inpatients aged 8-15 years in eligible National Health Service hospitals, July-September 2014.
Participants:
6204 parents/carers completed the parent section of the survey. The CYP section of the survey was completed by CYP themselves (n=3592), parents (n=849) or jointly (n=1763).
Main Outcome Measures:
Pain relief, involvement, quality of staff communication, perceived safety, ward environment, overall experience.
Analyses:
Single-measures intraclass correlations (ICCs) were used to assess the concordance between CYP and parent responses about the same inpatient episode. Multilevel logistic regression models, adjusted for individual characteristics, were used to compare the odds of positive responses when the CYP section of the survey was completed by parents, by CYP themselves or jointly.
Results:
The CYP section of the survey was completed independently by 57.8% of CYP. Agreement between CYP and parent responses was reasonably good for pain relief (ICC=0.61 (95% CI 0.58 to 0.63)) and overall experience (ICC=0.70 (95% CI 0.68 to 0.72)), but much lower for questions comparing professionals' communication with CYP and with their parents (ICC range=0.28 (95% CI 0.24 to 0.32) to 0.51 (95% CI 0.47 to 0.54)). In the regression models, CYP were significantly less likely than parents to report feeling safe (adjusted OR (AOR)=0.54 (95% CI 0.38 to 0.76)), involvement in decisions (AOR=0.66 (95% CI 0.46 to 0.94)) or adequate privacy (AOR=0.68 (95% CI 0.52 to 0.89)).
Conclusions:
Including CYP (8-15 years) in patient experience surveys is feasible and enhances what is known from parents' responses.