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


| INTRODUCTION
Sweden was one of the first nations to ratify the United Nations Convention on the Rights of the Child (UNCRC). 1,2 In January 2020, the UNCRC was incorporated into Swedish law. 3 According to the convention, every child has the right to be heard on all matters concerning them. 2 In Swedish health care, any person under the age of 18 years is considered to be a child, which is in line with UNCRC. 2 Health and medical care quality can be defined according to the requirements and goals that apply to health and medical care established in law and other regulations. 4 An example of these laws is the Patient Safety Act. 5 According to this Swedish law, patients are to be given the opportunity to participate in quality improvement. 4 Sometimes the patient is a child who has the right to be heard over matters concerning them, such as their experience during a hospital visit. Children should be allowed to give their views on their experience of healthcare, using patient-reported outcome and patientreported experience measures (PREM), as well as methods of involving them with increasing maturity and capacity, in the policy/planning process for the services they utilize. 6 According to the Swedish government, public sector actors should establish a dialogue with children. Moreover, responsible decision-makers must consider how decisions affect children. Adopting a children's perspective influences attitudes, knowledge and working procedures. 7 Although children's perspectives on healthcare are important, according to 'Council of Europe' children are rarely consulted on their views on these matters. 6 In Swedish healthcare, children's best interest does not tend to be considered sufficiently in all decisions concerning them. Specifically, instruments for achieving UNCRC values are lacking in paediatric care. 8 This study focuses on how paediatric departments offer children the opportunity to voice out their experiences, and the purposes for which these experiences are used.

| Background
The Swedish healthcare system holds an explicit public commitment to ensure the health of all citizens; the responsibility for health and medical care lies within 21 regions. A great number of publicly and privately owned health and medical care facilities can be found; however, they are generally publicly funded and all health and medical care for children is free of charge. The Swedish paediatric departments are located at both county and university hospital levels.
Highly specialized paediatric care is provided at six among the seven public university hospitals, which are located in some of Sweden's largest cities. Paediatric departments are either included in the hospital or located in a separate children's hospital (n = 3) in which, generally, one or several paediatric departments are included.
Usually, at the county hospitals, there are both a neonatal ward and an in-patient ward for older children, organized under one department. Even though subspecialisations exist, the care of seriously ill children is often provided in close collaboration with the university hospitals' paediatric departments. 9 According to the Swedish National Board of Health and Welfare's regulations and general guidelines, patients' perspectives on care are an important source providing useful information, which allows to constantly improve the quality of healthcare services.
Requirements are in place for healthcare regarding the implementation of self-monitoring by systematic follow-ups and evaluations to ensure the services' high quality. Self-monitoring, which enables national comparisons, also includes supervising that healthcare is conducted in accordance with the processes and routines that are a component of the departments' management system. Received reports, complaints and perspectives from the patients and their relatives must be compiled and analysed to view trends that indicate areas for improvement. 4 Children's perspectives on the elements defining quality in healthcare are not always the same as those expressed by parents. 10 It is important to listen to children's own opinions in research as well as regarding their experiences and, thus, professionals need to employ measures allowing children's perceptions and their perspectives in clinical practice to be considered. 11,12 There are different theoretical models for children's participation and influence. [13][14][15] Existing literature on children's participation presents, among others, Shier's model for enhancing children's participation in decision-making. [16][17][18] This model can be used as a tool for individuals, teams and organisations working with children and help them to explore aspects of the participation process, which can serve as a first stage to develop children's participation frameworks in an organisation. The model is based on five levels depending on the amount of participation being offered (see Figure 1). 15 Ensuring that children become involved in quality improvement work certainly presents a challenge. 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 NORDLIND ET AL. Emotional support; Experienced accessibility; Continuity and coordination; and Overall Impression. In paediatric care, the NPE is addressed to custodians and to children aged 15 years and onwards.
The survey is conducted every 2 years. 28 There are alternatives other than PREMs to allow children to voice out their experiences in healthcare. Advisory councils, including patients, can be utilized in improving the quality of healthcare and safety 29 and to make this improvement more patient-centred. 30 Groot et al. 31 suggested that patient councils that include and engage children could contribute to their voices not only being heard but also acted upon. However, this engagement requires the organisation to modify its agenda according to the children's perspectives. Another alternative may be to involve children in the development of clinical guidelines and patients' information. 19,32 Other methods for children's participation consist of allowing them to share their experiences through creative arts-based methods or approaches, such as for example photovoice, by writing letters to the management, and going online or engaging in face-to-face interviews. These methods can provide concrete improvements significant to children. 33 In summary, there is a lack of knowledge of the extent to which Additionally, it is important to explore how paediatric departments involve children in quality improvement work.

| 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.

| Study design
This study has a descriptive cross-sectional design. 34 Data were collected with a study-specific survey, which the participants answered electronically. A link to the survey was sent via e-mail to all heads of paediatric departments in Sweden, which offered both inand outpatient care (n = 39), in December 2019. All departments were publicly funded. If considered more appropriate, the heads of the departments could allow a coworker to respond to the survey.
Two reminders were sent out in January 2020, a few weeks apart, to obtain the highest coverage possible. Subsequently, those who had not responded after two reminders were contacted and offered the opportunity to answer the survey by telephone. 34,35 The answers from one respondent were excluded since the criterion of being a paediatric department with both in-and outpatient care was not met.

| Survey development
The study-specific survey (available within the Supporting Informa- The main focus of the survey was to determine whether the paediatric departments used any PREM questionnaires or other sources to promote giving a voice to children regarding their healthcare experiences. If so, how such information was used on an organisation level was investigated. Furthermore, the respondents were asked whether the paediatric departments used other questionnaires in addition to the NPE and whether these questionnaires were aimed at children, custodians or both (Q3).
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  In a question based on Shier's model of participation (Q12), the respondents were asked to grade the children's participation in quality improvement work at the paediatric department from one (very low) to five (very high), based on their ages and maturity levels. 15 The respondents were also asked if obstacles were observed in considering children's perspectives in the clinical quality improvement work, and if so, to describe this in their own words (Q13).
The survey finally included two questions regarding children's participation in their care and if the respondents experienced any challenges for such participation (Q10-11). These questions' results will be reported elsewhere.
The study-specific survey was piloted with six participants, who had a similar managerial assignment as the intended respondents but

| Data analyses
The analysis of the quantitative data was conducted by using descriptive statistics. The variables were expressed in the form of exact numbers and proportions expressed as percentages. 34 However, the answering alternatives were on a nominal or ordinal scale level.
Crosstabulations were used to describe other techniques of involving children to participate in the quality improvement work, depending on the type of hospital. The Statistical Package for the Social Sciences 37 was used to analyse the data. The statistical significance was assumed at p-value less than .05. 34 Open answers were analysed by two of the researchers (A. N. and A. A-C), guided by the method described by Burnard, to categorize and codify the qualitative data. 38 All open answers were compiled into one document and categorized in a matrix. Colour-marking was used to clarify the meaningful words and sentences. The categories covered aspects from more than one open question but were similar to those in the studyspecific survey. For example, all text regarding the methods the respondents described to capture children's perspectives on their care in techniques, other than questionnaires, were compiled in the matrix regardless of which question the answer was provided in. In the next step, text related to various survey themes were summarized and translated into English. Then a summarized text illustrating the main content of the free-text responses was written. To validate the analysis process, every step was documented in the matrix to retract and observe the original open answers.

| Ethical considerations
The research was conducted per national requirements and con-     Seven departments reported having a children's council. This was more common for universities (5/11) than county hospitals (2/17).
The respondents described how they worked with the children's councils to involve patients in quality improvement, and for example, consulted a reference group with children before making decisions.

| Implementing a children's rights perspective
The departments were equipped with action plans for considering a children's rights perspective and had contact with children in, for

| Opportunities and obstacles using children's perspectives in clinical quality improvement work
Most of the respondents who employed the results from the questionnaires (including the NPE) for quality improvement (22/28), reported using perspectives on the needs and requests of different patient groups (n = 20). Meanwhile, other areas were reported to be utilized to a lesser degree (see Table 2).
Some of the respondents stated that children's participation in quality improvement could be improved and more systematic. Thirteen respondents (46%) rated that the paediatric department had a low to a very low degree of consideration of children's perspectives in their quality improvement work (see Figure 4).

| DISCUSSION
This study aimed to describe how paediatric departments in Sweden promoted giving a voice to children on their healthcare experiences.
The results from our study demonstrated that a variety of questionnaires were used targeting different respondents. the paediatric departments. However, it must be specified that the inquired matters are also important for children, hence, they should also be involved in this study. 26

| Strengths and limitations
A strength of this cross-sectional study was that the survey contained both closed and open-ended questions. 35 The respondents had the opportunity to complete open answers in all questions. Some respondents had provided detailed descriptions and explanations for their answers, while others had solely answered the closed questions.
However, the data collection method was limited as it did not provide the opportunity to ask follow-up questions to gain in-depth knowledge. The respondent could attach the questionnaires used; however, only a few were submitted.
The perception is that the respondents spent varying amounts of time answering the survey, which indicates that the results could have been more comprehensive. The study was also limited since the departments in the children's hospitals had the lowest response rates. The response rate might have been affected by the outbreak of the coronavirus pandemic in Sweden due to work overload among the participants.
Despite these limitations, considering all the paediatric departments within the inclusion criteria had been offered the opportunity to participate, the eligible sample was 38 and the actual sample was 28 (74%), which is sufficiently sized. 35 Another strength of the study was the general degree of competence of the group designing the study-specific survey developed in collaboration with representatives from the SALAR. The cooperation with SALAR, a national authority, may have contributed to the relatively high response rate. If considered more appropriate, the heads of the departments could allow a coworker to respond to the survey. This, as well as the fact that the survey was answered electronically, may also have contributed to the relatively high response rate.

| Conclusion
The study's results indicate that the national co-ordination to facilitate the exercise of children's rights and their opinion being heard regarding their experience in healthcare can be improved.
The Swedish laws regarding patients' participation and children's rights are clear; however, it is the responsibility of each region and the heads of departments as to how these laws are implemented.
This study does not provide answers on how children experience opportunities allowing their voice to be heard and their perspectives on healthcare to be expressed. It would be interesting to hear children's perspectives on the methods of participation in the quality improvement work in healthcare systems. It would also be interesting knowing which method is considered the most effective for the paediatric departments to include the children's perspectives in quality improvement processes.
A validated national PREM developed with and aimed at children is one way to give them equal opportunities in giving their opinion on their experiences in healthcare, regardless of their diagnosis or which paediatric department they visit.
Thereafter, it is of crucial importance as to how the results can be implemented. The study-specific survey was developed in collaboration with representatives from SALAR, the authority that is responsible for the national patient survey.