Aims Patients‘ perspectives are essential to understanding the quality of healthcare services. Despite the importance of children and young people’s (CYP) experience of healthcare, they have traditionally been excluded from many patient experience surveys. This study aimed to investigate the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission.
Methods The English CYP Inpatient and Day Case Survey 2014 (n=6204) has a parent section, and a CYP section which can be completed by CYP (8–15 years), parents, or jointly. The proportion of CYP who answered independently in each clinical and socio-demographic group was analysed. Single-measures intraclass correlations (ICCs) were used to assess the concordance between CYP and parent responses about the same inpatient episode. Multi-level 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 (8–11 years 52·1%; 12–15 years 63·1%). Despite good overall concordance between CYP and parent responses for pain relief (ICC=0·61 [95%CI 0·58–0·63]) and overall experience (ICC=0·70 [0·68–0·72]), responses differed in up to 23·5% of cases. Concordance was lower for questions comparing professionals’ communication with CYP and with their parents (ICC range=0·28 [0·24–0·32] to 0·51 [0·47–0·54]). In the regression models, CYP were significantly less likely than parents to report feeling safe (AOR=0·54 [0·38–0·76]), involvement in decisions (AOR=0·66 [0·46–0·94]), or adequate privacy (AOR=0·68 [0·52–0·89]).
Conclusion Including CYP in patient experience surveys is feasible, enhances what is known from parents’ responses, and has potential to improve the quality and patient-centeredness of paediatric care.
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