Any decision-making process should be based on clear information about what is known and what can be expected both in terms of the process itself and the roles of different stakeholders involved. In health care, informing children can help them understand their situation, overcome possible fears and anxiety surrounding treatments and generally empower them. Information is also a pre-requisite for meaningful participation and is applicable to all children, independently of their age, background or health status. 

Some children face additional challenges or barriers to being included in decision-making processes, for example, children with a disability, children experiencing mental health problems or a specific health condition, young children, as well as children from vulnerable groups. Therefore, targeted and appropriate support should be provided on a case-by-case basis, to enable the equal exercise of children’s right to participate.

Children should be provided with appropriate and necessary information to enable them to acquire competence for making decisions, to weigh the aim, methods involved, necessity and usefulness of a proposed treatment or intervention against its risks and the discomfort or pain it will cause.  Information, communication and education should also enable children and families to play active roles in achieving, protecting and sustaining their own health.

A sensitive issue sometimes is whether and how to talk to children about serious consequences. One may be tempted to avoid mentioning possible fatal outcomes, pain, risks of disability, etc. This requires an assessment of children's maturity in receiving this type of information and their capacity to express their opinion on the subject, as well as a thorough evaluation on the timing and best way to communicate, but it should not be assumed that such serious subjects should be avoided with children. The giving of information actively helps many children to cope with even the most difficult of circumstances, and the absence of information may exacerbate fear and distress. Information to children about serious consequences should always be given carefully and psychological support should be offered to children and their families throughout the information process.

Information should be given about the following aspects:

 The specific situation the child is going through, such as information about a new illness, developments of a chronic or other long-term illness or planned hospitalisation experience;

 Type of treatments and duration, benefits to the child and related risks or possible effects (i.e. what could go wrong, cause problems or make the child worse); 

 Any alternatives to treatment that are suitable to the child;

 Any additional needs that may influence the choice of treatment;

 What might happen if the child does not receive the proposed treatment;

 Which health care professionals they will meet, who they are, and what their role is;

 Children’s right to be informed throughout the process, to ask questions, express their views and how they will be involved in the decision-making process. 

 Children’s rights concerning their participation in paediatric research and clinical trials, where applicable.

The information provided by health care professionals must be sufficiently clear and suitably worded, for example, professionals should avoid the use of medical jargon and include terms that the child can understand. Conversely, if the language used is too childish, the child may feel patronised, so the right balance is important. Sometimes it may be necessary to give information in stages that can be understood and absorbed, and it may be useful to repeat the same information at different times and stages or to complement verbal information with written information where possible and appropriate. 

Child-friendly information materials can be used to support the communication and mutual understanding of children, parents and health care professionals. It also helps children to reflect on the information they received orally and to identify questions for a follow-up conversation with the health care professionals. Child-friendly materials may cover any of the topics listed above and can be developed with a participatory methodology to be better adapted to children’s needs and understanding. Possible formats of child-friendly information material include brochures and leaflets, videos, information accessible through social media, specific websites or applications, games and other. Professionals may also use dolls or toys for “pretending” or simulating. 

In any case, it is important that health care professionals who interact with the child make sure they coordinate among themselves to avoid giving potentially contradictory information or repeating the same information too many times.

USEFUL RESOURCES

Examples of child friendly charters and information on children’s right to be informed and heard (suggestions):  

GOOD PRACTICES

Examples of child friendly information about consent:

Consent to medical research

Consent to medical research

Consent to medical research – Taking part in research – How might your medical data and samples be useful for researchers (in different languages – active link) - University Hospital of Vaud canton in Lausanne, Switzerland) 
Video

Video

(in French only - active link)

What is consent and why am I being asked for it?

What is consent and why am I being asked for it?

Great Ormond Street Children’s Hospital – NHS – UK  - 

Using innovative child-friendly format

“My Clinical Trial Center” – a serious game / app

“My Clinical Trial Center” – a serious game / app

“My Clinical Trial Center” is a digital game with an educational purpose. It aims to explain to children in a fun way what clinical trials are, how they work and why they are so important to developing medicines suitable for children. 
The game is extremely informative: game-players will learn about clinical trials, study protocols, informed consent and assent in children, phases and procedures of clinical trials, data collection, and pharmacovigilance. It can be downloaded in Play Store and Apple Store. The game is currently in English. The game was developed with a participatory methodology by the TEDDY KIDS (KIDS Bari and Albania young) members and received approval of the International Children's Advisory Network (iCAN). 

Facilitating direct online communication between children and professionals

eHealth as an aid for facilitating and supporting self-management in families with long-term childhood illness – development, evaluation and implementation in clinical practice

Since 2018, research has been conducted within the eChildHealth research program, funded by Forte until 2025, with the aim to develop safe and satisfactory child-centered care with the support of e-health. The research follows the Medical Research Council's framework for developing, evaluating, and implementing complex interventions in healthcare.

The overall goals are:

  • 1) to push the boundaries of current knowledge about clinical efficacy and cost-effectiveness for e-health as a tool for promoting and assisting self-care for children with long-term illness and their families.
  • 2) to build a sustainable multidisciplinary environment for the development, evaluation, and implementation of e-health in support of self-care for children and their families.

The research program includes several clinical studies in pediatric care with the aim of strengthening and developing safe and satisfactory child-centered care with the support of e-health. But also, studies of implementation, technical development, health economics, and cultural actors. Subprojects are conducted in Sweden, Denmark, and Ethiopia. The focus is on complex, long-term, and costly challenges in pediatric care.

In Sweden, this applies, for example, to surgery for children born with malformations of the gastrointestinal tract and/or with heart defects, children born prematurely, and children with cancer. The technology being studied is an application in an e-tablet where parents and staff communicate via chat, photo, text message, film, and repeated reports about the child's condition. The goal is to give the child and the family security and support at home and reduce the family's need for travel and return visits to the hospital. In Denmark, it is being investigated how a mobile application can be used as an aid for the early identification of cerebral palsy in children and how e-health can be used as a tool for intravenous treatment at home for children and young people with acute or long-term illness. Ethiopia is investigating whether text message reminders are an effective strategy to increase adherence to treatment for young people living with HIV.

The end-users, (the parents, or the children/adolescents, as well as the professional caregivers) participate throughout the research process. The project includes three phases: development, evaluation, and implementation. Both validated and reliable questionnaires, as well as qualitative interviews, are used for data collection. The research is conducted by a multidisciplinary research team in health sciences, medicine, economics, technology, and social sciences, which work together on common research issues. Computer technology expertise analyses the conditions for using IT in healthcare; health economic evaluations are made in parallel with the clinical studies; and the challenges that arise as a result of e-health changing the relationships between children, families, and professional actors, are studied in the basis of cultural perspectives and implementation research.

 See also: eHealth in Paediatric Oncology — Lund University - Sweden 

Removing barriers to child participation

Linguistic cultural mediation services

Linguistic cultural mediation services

Progetto Intercultura: Re-organising services at hospital level to respond to the needs and rights of migrant children - Meyer University Children’s Hospital, Florence, Italy

 Facts, figures and trends

In a national and regional context of increasing immigration, the Meyer University Children’s Hospital attempts to respond to the health needs of migrant children and their families not only in a treatment perspective, but also through the provision of health promotion services in a holistic perspective. The services provided aim to guarantee adequate information about the services, as well as guarantee access, appropriate use and participation in all services provided.

In 2008, 209 children of foreign national were hospitalised, out of 19,480 children. In addition, 385 accessed the out-patients’ clinics and 115 access the emergency department, out of a total of 500 and 104.088, respectively. Most of these children were of Albanian, Romanian, Chinese, Moroccan, Peruvian, Iraqi and Algerian origin.

 Background information and specific services for migrant children

The new Meyer University Children’s Hospital has a capacity of 200 beds (including 50 beds for day hospital), 7 operating rooms, 9 diagnostic rooms and 5,000 square meters green areas.

One of the most important services focusing on migrant children’s healthcare is the cultural and linguistic mediation. From the 2004, the hospital joined the Progetto Intercultura (Intercultural Project) of the Tuscany HPH Network with the aim to support migrant children and their families in order to:

  • Facilitate the communication between service users and health staff ;
  • Guarantee as best as possible, access to all services provided by the hospital;
  • Facilitate the work of hospital staff , which also due to different International Development Cooperation protocols, is increasingly in contact with patients from different backgrounds.

The hospital ensures cultural and language mediation in different languages, including Albanian, Arabic, Chinese, Romanian, Somali, French, English, Spanish, Polish, Czech, Slovak, Macedonian, Serbo- Croatian, German and Philippine. An interpretation service is also available via telephone, which is used especially in cases of emergency. This service is available from Monday to Saturday between 8 a.m. and 8 p.m.. Presently, this service is being mostly used in the emergency service, in-patient departments and in the day-hospital.

In 2008 the following languages were the most frequently used: Romanian, Arabic, Russian, Chinese, English, Iraqi and Macedonian.

Following the needs of the hospital and upon suggestion from the hospital staff , the SOS Intercultural Team was also activated. This group is composed of 22 professionals working in the hospital with language competence in 10 different languages: Albanian, Arabic, Bulgarian, French, English, Iranian, Romanian, Spanish, German and Hungarian. This team does not substitute the formal cultural and language mediation services, but provides an emergency substitute, face-to-face or by telephone.

The hospital has also provided other services for migrant children, which will be indicated in the achievements section below.

 Description of practice

Timeframe and actors:

The Progetto Intercultura started in April 2004 and is still operational; whilst it has been developed and improved throughout its existence. The main actors involved are health and administrative staff as an operative, motivated, trained and voluntary part of the project; the hospital management by being committed to contribute to a cultural change within the hospital; and civil society organisations (i.e. the agency for language and cultural mediation). 

Aims and objectives:

The project aims to re-orient the hospital services in a culturally sensitive way; to receive and treat all children who arrive at the hospital appropriately through the respect of their cultural and religious and other social backgrounds; and to prevent and overcome discrimination against migrant children in accessing and understanding hospital services.

Target group:

Migrant children and their families.

Precondition needed for export:

a proactive hospital management and a motivated staff. All staff should be properly trained and have a high-level language competence, in order to be a real asset in cultural mediation.

 Achievements and lessons learned

  • to ensure the respect for the spiritual and cultural dimensions of health, the hospital undertook: the dissemination of the contacts of the religious entities present in the region in all departments and services; ratification of a protocol between the hospital and religious communities to ensure the necessary religious assistance to the patients of migrant background; and preparation of ‘Intercultural’ Calendars in 2006 and 2007, which were disseminated in every department and service to increase awareness of the main religious events. The hospital also provides ‘free and flexible’ menus, which are translated into different languages. The aim is to guarantee, as much as possible, the respect of the different cultural and social eating habits.
  • although one of the aims of the Progetto Intercultura was the increased access of migrant children to healthcare services, there has been no assessment to evaluate the extent to which improvement has been achieved.
  • in 2005 and 2006 the hospital promoted a training course entitled ‘At the Meyer Hospital we want them in one thousand colours’, with the aim to increase cultural awareness amongst hospital staff. The two-day training (total of 16 hours) was attended by over sixty percent of both health and administrative staff.
  • in 2008, 24 migrant children (out of 108) were provided home care services. The interesting fact is that all foreign children were of Albanian nationality. This may indicate that children and families of Albanian origin are more integrated into Italian society and therefore have more information of the services available and how to request them. If this is the case, the hospital should promote actions to ensure that other populations of migrant or ethnic minority background have more information and access to different healthcare services.
  • the hospital has signed and approved a Charter of Children’s Rights in Hospital. This demonstrates the hospital’s commitment to ensure the respect, protection and realisation of children’s rights in hospital.
  • it is also possible to say that other hospital policies and characteristics of the hospital are contributing to the realisation of children’s rights in hospital: the new and innovative hospital infrastructure has guaranteed a new arrangement of spaces, playgrounds, education
  • spaces and common spaces adequate to children’s needs and
  • an upgrade of rooms, with the availability of single and double rooms with private bathrooms, as well as, the possibility for parents to stay in children’s rooms during hospitalisation.
  • regarding hospital forms and information material, the hospital has produced: Frequently Asked Questions (FAQs) Guides to communication with foreign patients for both the administrative office that receives patients and the emergency department; information material about informed consent and the preparation of patients in the radiology department; and the publication of a booklet entitled ‘What is Tuberculosis?’, which has been translated into 8 languages and distributed in hospital departments, services and schools. At present, the hospital is also preparing for publication the production of an information leaflet to be translated into 8 languages on the Newborn Screening Programme undertaken by the hospital at regional level for the diagnosis of genetic and rare diseases. The leaflet will be distributed to parents at the time of birth.
  • for the care of pain, the hospital has information in Italian, Albanian, Romanian, Arabic, Chinese, English, French and Spanish.
  • with the aim to contribute to the protection from all forms of violence against children and the elimination of traditional practices harmful to the health of children, in collaboration with a local cinema school, the Health Promotion Programme designed and prepared a short movie on FGM. On a first occasion, the movie was presented in the hospital to an audience of approximately 100 people, to whom the DVD was freely distributed. The DVD has also been sent to national and international partners, local libraries and, in partnership with the local government, distributed to all local educational institutions.
  • the strongest point of the project is the motivation of health staff. On the other hand, one of the weakest points has been the lack of strong commitment by the hospital management.

 Conclusion

Within the framework of the Progetto Intercultural, the Meyer University Children’s Hospital has promoted a number of initiatives aimed at improving both the access and the quality of healthcare given to migrant children. The project is seen by the responsible staff as of major importance, however there has been no systematic evaluation of the project. There have also been some organisational challenges, including the opening of the new hospital at the end of 2007 and the change of the Hospital’s management structure. Despite this, the project is ongoing. 

 Ensuring the right of migrant children to health care: The response of hospitals and health services

Facilitating direct online communication between children and professionals

eHealth as an aid for facilitating and supporting self-management in families with long-term childhood illness – development, evaluation and implementation in clinical practice

Since 2018, research has been conducted within the eChildHealth research program, funded by Forte until 2025, with the aim to develop safe and satisfactory child-centered care with the support of e-health. The research follows the Medical Research Council's framework for developing, evaluating, and implementing complex interventions in healthcare.

The overall goals are:

  • 1) to push the boundaries of current knowledge about clinical efficacy and cost-effectiveness for e-health as a tool for promoting and assisting self-care for children with long-term illness and their families.
  • 2) to build a sustainable multidisciplinary environment for the development, evaluation, and implementation of e-health in support of self-care for children and their families.

The research program includes several clinical studies in pediatric care with the aim of strengthening and developing safe and satisfactory child-centered care with the support of e-health. But also, studies of implementation, technical development, health economics, and cultural actors. Subprojects are conducted in Sweden, Denmark, and Ethiopia. The focus is on complex, long-term, and costly challenges in pediatric care.

In Sweden, this applies, for example, to surgery for children born with malformations of the gastrointestinal tract and/or with heart defects, children born prematurely, and children with cancer. The technology being studied is an application in an e-tablet where parents and staff communicate via chat, photo, text message, film, and repeated reports about the child's condition. The goal is to give the child and the family security and support at home and reduce the family's need for travel and return visits to the hospital. In Denmark, it is being investigated how a mobile application can be used as an aid for the early identification of cerebral palsy in children and how e-health can be used as a tool for intravenous treatment at home for children and young people with acute or long-term illness. Ethiopia is investigating whether text message reminders are an effective strategy to increase adherence to treatment for young people living with HIV.

The end-users, (the parents, or the children/adolescents, as well as the professional caregivers) participate throughout the research process. The project includes three phases: development, evaluation, and implementation. Both validated and reliable questionnaires, as well as qualitative interviews, are used for data collection. The research is conducted by a multidisciplinary research team in health sciences, medicine, economics, technology, and social sciences, which work together on common research issues. Computer technology expertise analyses the conditions for using IT in healthcare; health economic evaluations are made in parallel with the clinical studies; and the challenges that arise as a result of e-health changing the relationships between children, families, and professional actors, are studied in the basis of cultural perspectives and implementation research.

 eHealth as an aid for facilitating and supporting self-management in families with long-term childhood illness – development, evaluation and implementation in clinical practice

 See also: eHealth in Paediatric Oncology — Lund University - Sweden