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

Abstract

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

Political representatives' experiences of child participation in decision‐making processes: A qualitative interview study

“…These results are similar to results in a study by Ozer et al (2020), who found that there were many methods and forums in use for participation, and they varied depending on the organization and its purpose. Nordlind et al (2021) found, in a study about how paediatric departments in Sweden facilitate giving children a voice in their experiences of healthcare, that there is no one and only possible systematic, coordinated way to collect children's opinions-at least not thus far. Nordlind et al (2021) suggest a validated national patient-reported experience measure to be developed with and aimed at children, which could provide them with equal opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit.…”

“…Thus, we found that a variety of methods are being used and that more could be done to ensure that children can be heard. The study of Nordlind et al (2021) found that national coordination can be improved, a finding that could be applied to municipal organization as well. Participation involves access to the process and actual impact from the children's input (Checkoway & Gutierrez, 2006).…”

MyHospitalVoice – a digital tool co-created with children and adolescents that captures patient-reported experience measures: a study protocol

“…Thus, providing them with a tool to make their voices heard represents a way to secure these rights and put them more in focus. Patient-reported experience measures (PREMs) are a valuable method for systematically incorporating the voices and participation of children and adolescents into the healthcare system [3]. PREMs are questionnaires that systematically measure the patient experience, providing patients with the opportunity to express their views on their encounter with the hospital and healthcare professionals [4].…”

Children's and young people's experiences of expressing their views and having them heard in health care: A deductive qualitative content analysis

“…Despite the reported benefits of being included in healthcare decision‐making (Bjønness et al., 2020; David et al., 2018; Miller & Jawad, 2019) and children's capacity and desire to have a voice in their care (Coyne & Gallagher, 2011; Foster et al., 2022; Kilkelly & Donnelly, 2006; Viksveen et al., 2022), children are still routinely excluded (Coyne et al., 2014; Kilkelly & Donnelly, 2011; Lundberg et al., 2021; O'Connor et al., 2021). Additionally, children's views are often excluded from service evaluations, even when the views of their parents are taken into consideration (Nordlind et al., 2022; Schalkers et al., 2016; Starlight Children's Foundation, 2021).…”