Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting

Wray, Jo; Hobden, Sylvie; Knibbs, Sarah; Oldham, Geralyn

doi:10.1136/archdischild-2017-313032

Cited by 24 publications

(20 citation statements)

References 7 publications

(3 reference statements)

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“…Patient experience survey programs are necessary for monitoring quality of care, and they can provide meaningful and valuable information for quality improvement initiatives (2)(3)(4). Most patient experience surveys administered routinely in hospitals are restricted to adults, such as the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) in the US, the National Health Service Patient Survey Programme (NPSP) in the UK, and the Chinese Patient Experience Questionnaire (CPEQ) survey in China (5)(6)(7)(8). Standardized questionnaires and methods used to measure children's experience in hospitals in different cultural contexts have been less investigated historically (9,10).…”

Section: Introductionmentioning

confidence: 99%

Reliability and validity of an instrument to assess pediatric inpatients’ experience of care in China

Hu¹,

Yuan²,

Ren³

et al. 2021

Transl Pediatr

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Background: The Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) is a standard instrument to measure pediatric inpatients' experience of care. Currently, no Chinese version of the Child HCAHPS exists for Chinese patients. Therefore, this study aimed to create a Chinese version of the Child HCAHPS and investigate its validity and reliability in a Chinese setting.Methods: Using the approach recommended in guidelines from the Agency for Healthcare Research and Quality for translating HCAHPS surveys, we produced a Chinese version of the Child HCAHPS. A twomonth field test with seven hospitals across five provinces in China was performed to assess its validity.Construct validity was assessed using confirmatory factor analysis. We evaluated convergent validity by factor loading, average variance extracted (AVE), and construct reliability (CR). Cronbach's alpha and corrected item-total correlation (CITC) were used to reflect hospital-level unit reliabilities for the survey's item composites. The correlation of the measure score with the overall rating was calculated to evaluate criterion validity.Results: An overall response rate of 63% was achieved, and 2,258 respondents completed the questionnaire.Confirmatory factor analysis showed a comparative fit index (CFI) of 0.905, a non-normed fix index of 0.886, and a root mean square error of approximation (RMSEA) of 0.089. Most items had factor loadings over 0.7. Cronbach's alpha coefficient on the overall level was 0.981, and all measures' CITC exceeded 0.6, demonstrating good to excellent hospital-level reliability of the composite and single-item measures. All composite measures had good to excellent internal consistency reliability (0.716 to 0.994). Item-to-composite correlation ranged from 0.510 to 0.997. Composite-to-composite correlations ranged from 0.488 to 0.997.According to the survey result, for all the 18 composite or single-item measures, mean top-box scores ranged from 56% ("Involving teens in care") to 87% ("Informed in Emergency Room"). Conclusions:The Chinese version of the Child HCAHPS demonstrated acceptable validity and reliability.The application of this tool can help benchmark ongoing healthcare improvement initiatives in China.

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Section: Introductionmentioning

confidence: 99%

Reliability and validity of an instrument to assess pediatric inpatients’ experience of care in China

Hu¹,

Yuan²,

Ren³

et al. 2021

Transl Pediatr

View full text Add to dashboard Cite

show abstract

“…However, it must be specified that the inquired matters are also important for children, hence, they should also be involved in this study. 26…”

Section: Discussionmentioning

confidence: 99%

“…18,42 Other validated questionnaires were aimed at both inpatients and outpatients, regardless of their diagnoses. 26,27 Such questionnaires can give many children the possibility to express their opinions and may access many individuals, which is a positive aspect from an equality perspective.…”

Section: Discussionmentioning

confidence: 99%

“…There were also questions focusing on how the results from the questionnaires (including the NPE) were employed (Q4). The predetermined answers were based on previous literature, 26 the areas in the NPE, 28 the UNCRC 2 and relevant Swedish laws. 4,5,36 Multiple answers were possible.…”

Section: Survey Developmentmentioning

confidence: 99%

“…19 One way of involving children is to systematically inquire about their experience, PREM's gather information on patients' experiences while they receive care. 20 Several instruments for PREM aimed at children have been developed, among others, in the Netherlands, 21 the United Kingdom, [22][23][24][25][26] Sweden, 27 Australia and New Zealand. 18 However, how they are The survey is conducted every 2 years.…”

Section: Introductionmentioning

confidence: 99%

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How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross‐sectional study

Nordlind

Sundqvist

Anderzén‐Carlsson

et al. 2021

Health Expectations

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Background: In January 2020, the United Nations Convention on the Rights of the Child was incorporated into Swedish law. According to Swedish regulations, patients are to be given the opportunity to participate in quality improvement. Sometimes, the patients are children who have the right to be heard on matters concerning them, such as their experience of a hospital visit.Objective: This study aimed to describe how Swedish paediatric departments facilitate children's voices on their healthcare experiences and how their perspectives are taken into account in quality improvement work.Methods: This study has a descriptive cross-sectional design. Data were collected using a study-specific survey sent by e-mail to all the heads of the paediatric departments in Sweden, with both inpatient and outpatient care. The response rate was 74% (28 of 38 departments). Results:The results demonstrated a variation in questionnaires used and to whom they were targeted; less than half of the participating departments reported having had questionnaires aimed at children. The results also indicated a major variation in other working methods used to allow children to voice their experiences in Swedish paediatric departments. The results indicate that the national co-ordination in facilitating the children's rights to be heard on their experiences in healthcare organisations can be improved. Conclusion:Further research is required to ascertain which method is the most practically effective in paediatric departments, in what way children prefer to be heard regarding their experience of and perspectives on healthcare, and what questions need to be asked. A validated national patient-reported experience measure developed with and aimed at children could provide them with equal

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Eliciting the experiences of the adolescent-parent dyad following critical care admission: a pilot study

et al. 2018

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Critically ill adolescents are usually treated on intensive care units optimised for much older adults or younger children. The way they access and experience health services may be very different to most adolescent service users, and existing quality criteria may not apply to them. The objectives of this pilot study were, firstly, to determine whether adolescents and their families were able to articulate their experiences of their critical care admission and secondly, to identify the factors that are important to them during their intensive care unit (ICU) or high dependency unit (HDU) stay. Participants were 14–17 year olds who had previously had an emergency admission to an adult or paediatric ICU/HDU in one of four UK hospitals (two adult, two paediatric) and their parents. Semi-structured interviews were conducted with eight mother-adolescent dyads and one mother. Interviews were transcribed and analysed using framework analysis.Conclusion: The main reported determinant of high-quality care was the quality of interaction with staff. The significance of these interactions and their environment depended on adolescents’ awareness of their surroundings, which was often limited in ICU and changed significantly over the course of their illness. Qualitative interview methodology would be difficult to scale up for this group. What is known • Critically ill adolescents are usually treated on intensive care units optimised for older adults or younger children.• The way they access and experience health services may be different to most adolescent patients; existing quality criteria may not apply. What is new • Reported determinants of high-quality care were age-appropriateness of the environment, respectfulness and friendliness of staff, communication and inclusion in healthcare decisions.• The significance of these depended on adolescents’ awareness of their surroundings, which was often limited and changed over the course of their illness.

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Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting

Abstract: The new PREMs will provide children and young people receiving care in specialist paediatric hospitals with the opportunity to provide feedback on their experience. Sustainability and ensuring that feedback results in improvements need to be addressed in future work.

Cited by 24 publications

References 7 publications

Reliability and validity of an instrument to assess pediatric inpatients’ experience of care in China

Reliability and validity of an instrument to assess pediatric inpatients’ experience of care in China

How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross‐sectional study

Eliciting the experiences of the adolescent-parent dyad following critical care admission: a pilot study

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