To Örebro University

BACKGROUND: Using Patient Reported Experience Measures (PREM) is one way of assessing children's perspectives in identifying areas for improvement in paediatric care. The generic questionnaire Children and Young People - Patient Reported Experience Measure (CYP-PREM) has been adapted to the Swedish paediatric healthcare context to enable children to evaluate their care on issues important to them.

AIM: The aim of the study was to pilot the Swedish versions of the CYP-PREM questionnaire in paediatric care. METHODS: This pilot study used a descriptive cross-sectional design. Children aged 8-16 years were included when discharged from an inpatient ward or after an outpatient visit. The participating children were asked to complete two questionnaires: Swedish CYP-PREM (Swe-CYP-PREM) appropriate for their inpatient or outpatient visit and the age of the child, and a study-specific questionnaire to evaluate the children's opinions of the Swe-CYP-PREM.

FINDINGS: Out of the 319 invited children, 296 agreed to participate, of whom 189 children submitted the questionnaires, resulting in a response rate of 59.5 %. The Swe-CYP-PREM was well accepted by the target population and considered to provide good data completeness and few response errors. The Swe-CYP-PREM captured a range of experiences from children's healthcare visits, with predominantly positive responses. In the open-ended question about what was good or bad about the visit, 66 children had provided comments, which added value to the closed questions in the questionnaire.

CONCLUSION: The Swe-CYP-PREM can be used in clinical practice to enable children to voice their experiences after a healthcare visit.

BACKGROUND: There is no national, validated, generic patient-reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross-sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires.

AIM: The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context.

DESIGN: An exploratory sequential mixed-method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire.

PARTICIPANTS: A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8-16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid-Sweden region between October 2020 and June 2022.

RESULTS: The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3-10 questions in each of the different versions of the questionnaire.

CONCLUSION: The study has resulted in six face- and content-validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries.

PATIENT OR PUBLIC CONTRIBUTION: Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study.

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 opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit.