Children's rights as law in Sweden–every health‐care encounter needs to meet the child's needs

Abstract Background In 2020, the United Nations Convention on the Rights of the Child (UNCRC) became law in Sweden. This puts extra demands on Swedish health care for children in need. This study aimed to investigate children's experiences and paediatric nurses' experiences of caring in accordance with the UNCRC. Methods Interviews were conducted in 2019 with 10 children and 13 nurses at a paediatric clinic in western Sweden. Child and nurse data were analysed separately with qualitative content analysis. The results are presented as a synthesis of the combined analysis of both data sets. Results Children did not always meet health‐care professionals with the necessary competence to care for them, and they were not always cared for in a child‐friendly environment. Even though nurses in paediatric care had the competence necessary to meet children's rights in health care, organizational issues made it challenging. Providing health care in accordance with the UNCRC principles required time and competence. Sufficient time to help children participate in their care and ensure that they feel secure was considered necessary—regardless of the health‐care context. Conclusion Health‐care encounters without the necessary time or competence can affect children and future encounters negatively. Instruments to safeguard children's rights in health care need to be developed and implemented, such as a documentation system to make children's rights visible and/or UNCRC certification. Implementation of UNCRC principles in all health‐care situations for children as standardized care requires competence, involvement, strong leadership and economic support. Children's voices in research can assist in guiding care.


| BACKG ROU N D
Children are entitled to the highest attainable health and the best possible health care when required. 1 The majority of children and adolescents in Sweden encounter health-care services at some point in childhood, during periods of ill health or during routine childhood check-ups and immunizations. An ill child will require investigation and possible intervention, requiring various common medical investigations, such as needle-related procedures, which can cause fear and pain. 2 Fear and pain often intensify when children do not understand what is happening. [3][4][5][6][7][8] For children living with a long-term illness where repeated hospital visits and procedures are common, fear and pain are part of the child's everyday life. 4,9,10 Negative experiences of such procedures may affect the perspectives and experiences of the child during future health-care encounters. 11 The United Nations Convention on the Rights of the Child (UNCRC) 1 was formulated in 1989 to safeguard the rights of children and young people, and as of 1 January 2020, it became Swedish law. 12 This law aims to highlight children's rights and that these rights are considered in proceedings concerning children. The UNCRC consists of 54 articles, four of those articles are general principles which are helpful to interpret the rest of the convention (see Table 1).
Of Sweden's approximately 10.2 million inhabitants, 13 just over two million are under the age of 18, 14 an age limit that separates children from adults. 1 The rights of children in need of health care are regulated through various laws such as the Health Care Act, 15 the Patient Act 16 and now the UNCRC. 1 Children are a vulnerable group and even more so when in need of health care. Human rights should be taken into account in every situation where children are in need of health care, at all levels including primary care, emergency care and in paediatric specialist care. Nurses caring for children need specific knowledge 17 to maximize the benefits of care that can differ from caring for an adult. Parents and family play an important role in caring for children and in particular, providing security for the child. There is always a risk that children's needs and wishes are based on an adult's perspective of what is best for the child when the child is exposed to health care, 18 also referred to as the adult having a child perspective. 19 Young children's voices are often missing in research but should be heard. 2,20 The UNCRC becoming law in Sweden requires that nurses meet possible extra demands on health care when providing care for children. In order to gain an understanding of the difficulties that can arise in meeting the requirements of the UNCRC and how best address eventual difficulties, both children and nurses voices need to be heard. Therefore, the aim of this study was to investigate children and nurses in paediatric care experiences of caring in accordance with the UNCRC.

| ME THOD
The following table (Table 2) describes the research questions, based on the general articles from the UNCRC, 1 which guided this study.

| Study design
This study had a qualitative, inductive design. It involves the synergy of separate analyses of interviews with children and nurses at a paediatric clinic in West Sweden during 2019.

| Settings
Child patients involved in the study came from across several paediatric areas: an outpatient department, an inpatient care unit, a daycare unit and an emergency room.

| Participants
Eleven children were interviewed during April-May and September-October 2019. Two nurses working at the paediatric clinic asked a convenient sample of children and their parents, during appointments or on the phone, about participating in the study. Both parents and children were provided with verbal and written information-the written information had separate versions for parents and children. The parents also provided consent to the researcher to contact them for further information. The inclusion criteria were children between the ages of 4-7 years with adequate verbal skills to undertake an interview. All children had experienced medical procedures such as needle or other invasive procedures. Parents gave written consent to participate in the study, and children gave their verbal assent-those with the developmental ability to sign their name for assent did so. The participating children were patients at the paediatric clinic for different medical conditions such as cancer, kidney disease, gastrostomy and vasculitis. In the data analysis, each child interview was named 'C1', 'C2', etc More detailed information is presented in Table 3.

Article 2
Children shall be protected against all forms of discrimination Article 3 The best interest of the child shall be the primary concern in all actions concerning children Article 6 Children's inherent right to life, survival and development

Article 12
Children's rights to express their views, and their rights to have their views given due weight in accordance with their age and maturity TA B L E 1 General principles of the UNCRC 1

| Data collection
Ten interviews, lasting for 9-17 minutes with an average duration of 12 minutes, were included in the analysis. Ten interviews took place at the hospital, and one took place in one of the children's homes. One of the interviews was excluded from analysis due to the child changing their mind about participation. The interviewer, conducting every interview, was a nurse with master's degree and extensive experience in talking to children. To make the children feel comfortable and secure, parents were present during the interviews. This also facilitated establishing contact with the children. 2 The interviewer began by playing with and talking to the children to make them comfortable with the interviewer. 2 The parents present during the interviews provided a bridge between the interviewer and the children by helping their children understand the questions and sometimes explaining the children's answers to provide a deeper understanding. 20,21 Parents were allowed to interact with their children and the interviewer, by giving clues and examples, or clarifying the children's statements. 20 Focus was on the child throughout the process, and information from parents was not included in the analysis.
Questions based on Table 2 were asked in a way that children understood and complemented with follow-up questions such as 'tell me more' and 'what happened then?'

| Settings
Nurses at three paediatric primary health-care units, a paediatric inpatient unit and a paediatric day-care unit were included.

| Participants
Thirteen nurses were included in the study and interviewed during

| Data collection
Interviews took place at the nurses' workplaces in order to maximize opportunities for the nurses to participate and to minimize interference with the daily work in the units. This meant that the nurses were interviewed together with colleagues from the same unit; see Table 4. Group interviews provide possibilities for interaction and deepened discussion from different viewpoints, and this is considered a viable method to reach the participants' experiences of a specific subject. 22 All interviews were facilitated by the same researcher, and questions asked were based on

| Data analysis
Interviews with children and nurses were audio-recorded, identity removed and then transcribed verbatim. Both child and nurse data were analysed inductively with a qualitative content analysis. 23 Initially, the interviews were read several times to gain a deeper understanding of the At home 1 content of data. Narrations that concerned the study aim were first highlighted and secondly condensed to codes. In step 3, codes were freely sorted into categories based on content. In the fourth step, through discussions in the research group, subcategories were formed that described the content of the data. In step 5, through discussion within the research group, subcategories were merged to form generic categories.
Steps 1-5 were performed for each data set separately. When those steps of analysis were made, a complementary step as described by Darcy et al 21 followed, whereby a synthesis based on combined analysis of both subcategories and generic categories from both the children's data and nurses' data was made. Similarities and differences in children's data and nurses' data were sought, and in discussion with the research group, the synthesis of both groups of data resulted in a synergy of combined subcategories, generic categories and one main category (see Figure 1).

| Ethical considerations
The four ethical principles of respect for autonomy, beneficence, non-maleficence and justice in accordance with the Helsinki Declaration were considered during the research process. 24 The study received ethical approval by the Regional Ethical Review Board was assured as well as the children's right and parents' right to withdraw their consent during the study.

| Every health-care encounter needs to meet the child's needs
Attending health-care services as a child, or providing health care to children as a professional, is a process experienced to take considerable time. Sufficient time was needed to make children participate and feel secure. Children's experiences of time-consuming visits in health care also had to be considered while planning care for children. Children needed to meet health-care professionals with special competence in every health-care meeting. All in all, according to nurses, this is needed to be considered even from organizational level to keep children feeling secure and participating in their health-care encounters.

| It takes the time it takes
Both children and nurses pointed out that providing and experi-

| Children need to feel secure
Children actively participating in their own care were only found possible if the children were well-informed and felt secure. Nurses found parents as an important partner in achieving this goal. Nurses considered children's viewpoints when providing health care, but in spite of this children can experience discomfort or even restraint while undergoing care procedures.

Children need to be given opportunities to express themselves
Children need to be given opportunities to express themselves. It Children were encouraged to express their thoughts and wishes on aspects of care, but medical procedures had to be followed through anyway. One nurse explained how to be honest with a child before such a procedure; 'Yes, we know that you don '

| Discussion of the method
This is a small but insightful study. The study was performed before the UNCRC became law in Sweden, as even small, qualitative studies can help us guide and plan. 20 The study includes data from interviews with children and group interviews with nurses. Collecting data from more Hearing children talk about health-care experiences is not common in research, and making their voices heard is essential to increase understanding of how to implement UNCRC values in health care.
Interviewing children can be difficult, and using parents to help was found valuable to make the children feel safe and to establish contact with them. 21 The child was the focus, not the adult. Even so, parents provided an important bridge between the researcher and these young children. The research group has extensive experiences of interviewing children; even so, it is a challenging task. It was sometimes a short window of attention we had from the attending children and challenging to keep the focus on the subject for the interviews. With some children, playing during the interview was necessary to keep them interested in interaction with the researcher. 2,21,27 However, it is sometimes difficult to balance the focus on interview questions and playing with the child. Children associate rapidly, and to make them willing to interact with the researcher, who was unknown to them, it was important to be compliant to their choice of topic.
Our ambition was to have focus group interviews with mixed groups of nurses from the various departments as focus groups may offer possibilities for common reflection and discussion on the research questions. 22 Due to difficulties in recruiting enough nurses for focus group interviews, interviews were conducted in smaller groups and in each separate clinic or department. The number of participants in each group and the local settings were chosen in consultation with the nurses in order not to interrupt clinical practice. In smaller groups, each person could easily make one's voice heard and it was fairer for the group moderator to handle. 22 The groups got quite homogeneous, though there were members from the same unit and with similar backgrounds. McLafferty 27 has found that homogeneous groups often work better than heterogeneous groups.
Children in the study were patients at a paediatric clinic, and this was where they experienced many health-care-related issues.

| Discussion of results
Every care encounter needs to meet the child's needs to achieve the  Participation is not about the child wanting to participate in all care or giving consent to all efforts, but to try to find solutions that work as well as involving children to a great extent. 34 Dialogue with the child is essential to encourage child participation in care. Interviews with children show that a trustful relationship with health-care professionals is important 35 and that they want the possibility to influence their care. 32

| Children need to feel secure
Children need their parents to keep them well informed and to feel secure when receiving health care. 16,29 According to Article 9, 1 children shall not be separated from their parents. While caring for children, we also care for their parents. However, there is always a risk that children's needs can be overshadowed by parents' needs or opinions and pose a risk to Article 3. A child-centred perspective gives children a voice when receiving health care. The individual child is considered as the central subject but in close relation with and dependent on its family. In this way, autonomy and the child's competence are supported. 36 With this in mind, self-efficacy, as described by Banduras 37 as trust in one's abilities to cope with a specific task in one particular situa-

ACK N OWLED G EM ENTS
The authors would like to thank the children and the nurses who participated in this study. The funding to conduct this study was obtained from Sparbank Foundation, Sweden, and from University of Borås, Sweden.

CO N FLI C T O F I NTE R E S T
None.

AUTH O R CO NTR I B UTI O N S
KK and LD designed the study. SS, KK and LD collected and analysed the data and prepared the manuscript.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data are available on request.