Purpose

The purpose of this paper is to inform professionals working with children and their families about the guidelines entitled “child friendly health care” that were recently produced by the Council of Europe and endorsed by the ministers of 47 European nations attending the 9th Council of Europe Conference of Health Ministers in Lisbon, 29–30 September 2011.

The intention of the guidelines is to embed the values contained within the United Nations Convention on the Rights of the Child (UNCRC) and other relevant charters in a practical model of service delivery that drives learning and improvement at all levels—from policy and planning, via service organisation to individual clinical practice.

This child friendly health care approach combines the core principles of UNCRC with systems thinking and evidence, to produce a practical framework that is outcome orientated and requirement driven, but based on “journeys” that children and families experience in order to drive the improvements in safety, experience and outcomes.

It is intended that the values contained within UNCRC will drive value in services for children and families. However, to achieve this aspiration, all professional groups involved with families will first need to understand and then adopt and adapt the child friendly health care approach in their own practices, as well as in their approach to improving their services.

Council of Europe

The Council of Europe (CoE) was founded in 1949, following the Second World War. The CoE was established to defend human rights, parliamentary democracy and the rule of the law, as well as to promote a European identity based on shared values across different cultures. It started as a cooperation between 10 nations, but now covers 47 Europen nations, which have a collective population of 200 million children.

Building a Europe for and with Children

Building a Europe for and with Children is a CoE strategy that was implemented in 2005. The program’s main objective is to assist the decision makers and stakeholders involved in the design and implementation of national strategies for the protection of children’s rights and the prevention of violence against children.

The 2009–2011 strategyFootnote 1 considered that vulnerable children should be a priority issue, particularly focusing on children:

  • without parents,

  • with disabilities,

  • in situations of or at risk of poverty and social exclusion.

Building a Europe for and with Children has several other programs including Children in Social Care, Children’s Participation, Child Friendly Justice and Child Friendly Health Care.

Change fuels the need for a shared approach

All health care systems in Europe are currently facing similar challenges. The epidemiology of childhood conditions is changing; current systems are not achieving all their expected outcomes and there are often unacceptable variations in the quality and outcomes of services for children and families. Rising costs of health care are a constant concern, particularly in times of economic austerity. Achieving significant “added value” is often difficult without a shared approach across all sectors involved in the planning, delivery and improvement of services.

The changing epidemiology of morbidity in childhood

Across Europe, the epidemiology of childhood conditions is changing. Admissions to hospital for acute infectious disease are declining, but more children are surviving with significant degrees of disability arising from improvements in neonatal care and specialist care for conditions that would previously have been fatal.

At a societal level, there are significant increases in the prevalence of obesity, mental health conditions and health-related lifestyle problems such as substance misuse and sexually transmitted diseases. Not all nations are equally affected by these, but increases in health inequalities are apparent both within and between nations.

The challenges facing services

Service response has lagged behind this changing epidemiology. The “new morbidities” require interventions, care and support from a number of different professional groups simultaneously; the multiprofessional team has to come together around the family and deliver a service in the community setting rather than in hospital.

This transition of service delivery is occurring at different rates in different places. As a consequence of this, there are unacceptable variations in both access to and outcomes of services for children and families. This is furthermore compounded at times by limited access to some of the professional groups required, due to poor workforce planning, recruitment or retention.

Unlike the situation in clinical research, there are relatively few systematic health service research data providing information on how services should be delivered—e.g. quality–cost comparisons for different service structures—nor is there a robust evidence base concerning how services should be measured in order to identify where improvement is needed.

Child friendly health care

Since publication of the United Nations Convention on the Rights of the Child, many organisations have adopted and adapted the articles for specific use. Examples include the United Nations Fund for Children (UNICEF) and the International Save the Children Alliance, Save the Children, European Association for Children in Hospital (EACH), Child-Friendly Healthcare Initiative (CFHI) and the Baby Friendly Hospital Initiative (UNICEF).

Although the rights of children are well established, they have not been translated into a comprehensive model to guide policy making, planning and delivery of services across different sectors. The “child friendly health care approach” is a rights-based approach that focuses on improving the health and health outcomes of all children and families.

The UN Convention on the Rights of the Child includes the right to both health and the right to health care. Specifically, article 24 states: “States Parties recognise the right of the child to the enjoyment of the highest attainable standard of health and facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services”.

Therefore, the right to the highest attainable standard of health (the right to health) includes the right of access to health care (the right to health care) and, as such, involves all the systems and services (which constitute a wider spectrum than health services alone) that contribute to both health and health care.

Children have a right to good health in their own right, and promoting the health and wellbeing of children and young people brings benefits to society as a whole: because the antecedents of adult ill-health are often established in childhood (life course epidemiology) and because healthy, happy adults are both more able to care for their own children and provide for an increasingly ageing population.

Multiple factors contribute to the health of a society

There is more to generating health in society than just providing excellent health services. Health is promoted over time, through a process of increasing exposure to positive health determinants throughout childhood, including nutrition, a loving family, a safe environment, access to education and many other elements. This health-promoting approach should be complemented by a health-protection approach aimed at decreasing exposure to negative determinants or potential health hazards, e.g. illegal drugs, poor air quality and exploitation or abuse.

However, access to excellent health services is important both for acute illness or injury and where a child has a long-term condition. Health services for children can be extremely complex, ranging from neonatal intensive care or sophisticated specialist care, such as heart–lung transplantation; to immunisation and screening programmes (e.g. newborn blood spot or hearing screening); through to community-based interventions to improve mental health, such as anti-bullying and emotional literacy programmes. Services thus need to address the management of a condition, the impact on the child, the consequences for the family and community-based determinants.

The importance of other, non-health agencies contributions to the health of children cannot be understated: health-promoting schools; social care organisations (supporting vulnerable families and investigating child abuse concerns); voluntary sector support of families where there is a long-term condition (or disability); the approach of the criminal justice system to crime and social disorder and access to housing in safe communities all play their essential parts.

The basic premise is that children have the right to high-quality healthcare, that services should be designed around the needs of both children and their families and that all parts necessary to achieve a good outcome are in place and working well together. Services and organisations must therefore have the commitment and capacity to work together and meet the changing needs of future generations; they must evolve through a process of learning that is based on quality improvement and innovation.

This rights-based model of care should ensure that the right children receive the right care at the right time; delivered in the right place by the right people in the right way—all at the right cost. The intention is to achieve the right experience and outcomes with the resources available, in effect, to achieve values for children driving value in services.

The child friendly health care approach

The child friendly health care approach constitutes an integrated conceptual and operational framework that fully respects children’s rights and health requirements, therefore underpinning all models, strategies and programmes relating to children and families. The child friendly health care approach is therefore a model relevant to the planning, delivery and improvement of all services for children and families that contribute to their health and wellbeing. It is universally applicable; from the policy-making level through to working with individual children and their families. The model integrates strategies to improve health and wellbeing with strategies to tackle problems when they occur.

The aim of the child friendly health care approach is to integrate the relevant rights of children (with respect to health and health care) into a practical framework that drives learning, cultural change and consequent improvement in all services contributing to the health and wellbeing of children. The importance of good coordination (at one point in time) and continuity (over a period of time) of care, based on an integrated and multidisciplinary approach (sometimes referred to as a “continuum of care”) should not be underestimated. This extends across the traditional boundaries of primary, secondary and tertiary health care organisations to involve health, education, social care and justice systems, whether these be in the public, private or voluntary sectors. The child friendly health care approach should be applicable at the levels of policy/planning development and service delivery, and at the level of individual children and families.

The model focuses on service provision based around the “journeys” that children and families take through health services, a group of journeys being called a “pathway”. The intention is to ensure a safe service (with no unintended consequences) that provides a good experience and better outcomes than the traditional organisation and workings of services. Fundamental to this model are the teams of professionals providing the component parts of the pathway, who actively collaborate to create a network of services that are committed to continuous quality improvement. Continuous quality improvement requires the active engagement (participation) of the users of services, the providers of services and those who fund services to innovate and evaluate the way services are provided.

The rights on which the child friendly health care approach is based

Analysis of the articles contained within the UN Convention on the Rights of the Child reveals five guiding principles particularly relevant to child friendly health care. These are:

Participation

Meaningful participation is central to human rights and democracy. Children are often denied this right due to the cultural belief that they are “immature” and therefore “unable” to participate in decision making related to their own health. Furthermore, ascertainment of user views is an integral part of the process of service evaluation and improvement, as well as of priority setting at policy-making levels.

Promotion

The promotion of health and resilience is essential to the achievement of better health, wellbeing and quality of life. The alignment of healthy lifestyles and positive determinants of health with the contribution health services make to restoring health is essential. True synergy between lifestyles, determinants and services requires that policy makers and major stakeholders create alignments between different policies or departments; that the private sector promotes healthy choices and that the health services promote and implement programmes based on the best available evidence.

Protection

Health protection is essential to avoid harm caused by exposure to hazards or to determinants that have a negative impact on health. Hazards appear in many forms, including environmental, social, economic or political. Children require protection from all forms of abuse and maltreatment, including a negative emotional environment, either at home or in their communities. Protection would also include the patient safety agenda, which intends to prevent harm from adverse events and errors occurring through contact with services.

Prevention

Preventing the development of conditions, or their progression, and the resulting disabilities is a central ethos for the provision of all services. Prevention should be combined with promotion and protection strategies, in order to detect treatable conditions early enough to improve long-term outcomes. Prevention activities are performed at different levels:

  • primary level: aims to avoid the development of a disease/condition, e.g. through vaccination, and to prevent a problem before it occurs;

  • secondary level: attempts to diagnose and treat an existing disease in its early stages before it results in significant morbidity, e.g. postnatal metabolic screening;

  • tertiary level: aims to reduce the negative impact of an established disease/condition by restoring function and reducing disease-related complications such as disability;

  • quaternary level: aims to mitigate or avoid the consequences of unintended harm caused by contact with a health system.

Provision

High-quality health care should improve health, reduce inequalities and create a sustainable system with the resources available. To achieve these three ideals, health care needs to be well organised, to ensure that all the necessary parts are in place and working well together for an individual child and their family. This requires a high level of cooperation and collaboration between those planning, providing and, where appropriate, regulating services. Creation of competent teams working collaboratively within integrated structures has been shown to improve safety, satisfaction with services and outcomes. Services contributing to the health and wellbeing of children should be seen as a whole system, which is designed around families and ensures they receive effective interventions in a timely and cost-effective way; which drives learning, competence and continuous quality improvement. Services that combine these five principles and achieve this goal this would be considered “child friendly”.

A description of the child friendly health care approach

The World Health Organisation (WHO) defines a health system as “all organisations, people and actions whose primary intent is to promote, restore or maintain health”. Its purpose is to “improve health and health equity in ways that are responsive, financially fair and make the best use of available resources”. It continues “systems thinking has huge and untapped potential, first in deciphering the complexity of an entire health system, and then in applying this understanding to design and evaluate interventions that improve health and health equity. It can open powerful pathways to identifying and resolving health system challenges”.

Systems thinking is therefore the process of understanding how the components of a system interact and influence one another within the system. In nature, examples of systems thinking include ecosystems in which various elements, such as air, water, movement, plants and animals, work together to either survive or perish. In organisations, evidence, people, information, structures and processes work together to achieve their stated purpose, thereby creating a sustainable system.

Every system has its “principles” for how it operates and makes decisions. These principles bind individuals, teams and organisations in terms of how they work together. Services for children and families should have a very clear purpose—to improve health, reduce inequalities and be sustainable within the scope of the resources available. Secondly, the pathway should be driven by sound principles—participation, promotion and protection. Thirdly, the services should be based on the best possible evidence—i.e. what should be done, by whom, where and when.

Some of the complexity within children’s services is due to the necessity of simultaneously considering multiple factors when assessing and responding to children’s needs, including the child’s condition, the condition’s impact on everyday life, the consequences for the family and their lifestyles and the determinants within the community. Individual lifestyles, determinants of health and health services are interdependent, and the added value of systems thinking is generation of alignment and synergy between these various elements, to create a system that is effective, efficient and equitable at all times.

In its simplest form, a pathway consists of four components: prevention, recognition and assessment, with subsequent access to a range of interventions. In Fig. 1, the triangle on the left represents the needs of the child, the family and the community; the triangle on the right represents outcomes measured by effectiveness, efficiency and equity. Primary prevention can be achieved through promotion or protection; recognition may be through a process of screening or responding promptly to concerns; assessment not only focuses on the potential condition, but also on the impact on the child, the strengths and weaknesses of the family and, where appropriate, the resources within their community. These resources may include access to health-related services. Interventions may range from medical and surgical to educational and social, depending on the assessment of needs.

Fig. 1
figure 1

Illustrating the four components parts of a pathway of care for a short-term condition

Full size image

This simple model of a four-component pathway can be expanded to more complex systems depending on their requirements, for example by expanding the model into cyclical review and transition pathways (Fig. 2). Here, the initial pathway is identical to the previously described pathway for a short-term condition, covering prevention through to diagnosis and initial treatment. Where the condition persists or creates additional permanent morbidities—for example hearing impairment following meningococcal septicaemia or cerebral palsy following neonatal intensive care—there is a cyclical review process which should offer proactive care, once again preventing, recognising, assessing and intervening for the conditions which are secondary to the primary problem. With reference to the aforementioned examples, these problems could include language or behavioural difficulties in a child with a hearing impairment, or contractures and hip dislocation in a child with cerebral palsy.

Fig. 2
figure 2

Diagram illustrating the combination of initial, review and transition pathways to meet needs and achieve outcomes for a long-term condition

Full size image

The transition pathway may be back to normality for a child following successful surgery for a congenital cardiac abnormality, or likely cure following chemotherapy for leukaemia. But for a lifelong condition there will be a transition pathway into adult services, for example in the case of diabetes (see example box) or attention deficit hyperactivity disorder (ADHD). The final transition may be into palliative or end-of-life care, if no more therapeutic options are available.

Evidence

Quantitative evidence, such as cost–benefit analyses, systematic reviews, randomised controlled trials and that available from peer-reviewed literature should be combined with quantitative or qualitative evidence derived from local services—for example on costs, user experience or outcomes—to inform of local priorities. In the absence of relevant evidence, decisions should be made based on values and principles.

Implementation of child friendly approaches

The principles for implementation of child friendly approaches are based on the WHO corporate strategy, which highlights four important aspects in relationship to services for children, young people and their families:

  • addressing inequities and facilitating the respect, protection and fulfilment of human rights;

  • taking a life course approach that recognises the continuum from birth, through childhood and adolescence, and into adulthood;

  • adopting a utilitarian public health approach, i.e. one focusing on major health issues that challenge populations as a whole and addressing the weakest points in services with effective, relevant interventions;

  • integrated learning, i.e. the continuous evaluation of services should be an integral part of service delivery, rather than being considered an “added extra”.

Fulfilment of human rights

The child friendly health care approach is an approach derived from the key principles contained within the UN Convention on the Rights of the Child, which itself is derived from fundamental human rights. Equitable access to quality health care is reinforced in Article 3 of the Oviedo Convention, which states:

“The aim is to ensure equitable access to health care in accordance with the person’s health needs. ‘Health care’ means the services offering diagnostic, preventive, therapeutic and rehabilitative interventions, designed to maintain or improve a person’s state of health or alleviate a person’s suffering. This care must be of a fitting standard in the light of scientific progress and be subject to a continuous quality assessment. In this context, “equitable” means first and foremost the absence of unjustified discrimination. Although not synonymous with absolute equality, equitable access implies effectively obtaining a satisfactory degree of care of a reasonable quality.”

Life course approach

The creation of health and wellbeing is a complex process that happens over many years and has been conceptualised in many different models. The terms quality of life, happiness and success could be substituted for health and wellbeing. The model adopted by child friendly health care is based on the concepts behind life course epidemiology, which propose that exposure to positive determinants of health promote quality and duration of life, whereas exposures to negative determinants of health reduce both quality and duration of life. Salutogenesis is therefore the process of creating health and wellbeing; pathogenesis is process of development of disease or medical condition.

Public health approaches and intersectoral action

Public health approaches are essentially utilitarian, ensuring that the greatest good is achieved for the greatest number of individuals, within the scope of the resources available. This approach balances primary prevention—by tackling determinants of health—with secondary and tertiary strategies largely provided within a health service. Influencing determinants of health that lie outside of the exclusive jurisdiction of the health sector requires the health sector to engage with other sectors of government and society. Intersectoral action refers to health outcome-influencing actions taken by sectors outside the health sector, usually in collaboration with the health sector.

Integrated learning

Child friendly health care should be seen as an example of an integrated learning system. This approach integrates purpose, principles and evidence into a practical approach based on pathways, which continually promotes quality and improvement of services. Three component parts are essential for creating this virtuous cycle of continuous quality improvement and learning:

  1. I.

    clarity of purpose and principles;

  2. II.

    a pathway-based delivery framework;

  3. III.

    a system which promotes innovation, learning and improvement.

Implementation requires adoption and, where necessary, adaptation of this approach by all the agencies, organisations and professional groups contributing to services for children and families. It is particularly important to achieve alignment and synergy between:

  1. I.

    policy makers from different sectors;

  2. II.

    commissioners, providers and regulators of services;

  3. III.

    health, education and social care organisations;

  4. IV.

    families, communities and local services.

It is essential to integrate a culture of learning and improvement into service delivery. Each agency should have a similar approach to the choice of evidence-based interventions, priority setting, maintaining staff competence, working in teams and continuous quality improvement.

Application and advantages of the child friendly health care approach

Users

Service users are primarily concerned about easy access, timeliness, good outcomes and their own experience of services. By ensuring all parts are in place and working well together, the child friendly health care approach ensures these expectations are met. The approach recognises that health is not distributed equitably, so there is an emphasis on improving equity for vulnerable groups and reducing variations in health outcomes, which, in turn, leads to reduction of health inequities and improves social solidarity.

Professionals/providers

Professionals are primarily concerned that their competence is put to best use and is maintained through professional development, thus ensuring the effectiveness of services. The child friendly health care approach puts evidence and competence of practitioners high on the agenda and links measurement, feedback and learning into a virtuous cycle of continuous quality improvement; which should reduce unnecessary variations and provide opportunities for ongoing learning. Innovation and improvement should be an integral part of service delivery and should enable financial flows to follow the evidence-based service delivery within a pathway.

Policy makers/planners

Policy makers are concerned that resources are used wisely, that financial flows are optimal, services are safe and that there is no unnecessary wastage in the system. The child friendly health care approach drives efficient, equitable and effective use of resources by examining the whole system: patients are put at the centre of service design, and integrated learning and improvement increases value for money, reduces the likelihood of harm and avoids waste.

Implementing the child friendly health care approach

Intentions and priorities

The intention is to create a synergistic, coherent strategy that integrates the relevant principles and creates mutually reinforcing virtuous cycles of learning to generate continuous improvement. The priorities for implementation will vary considerably between and within different nations, services and teams, as well as between individuals. Therefore, implementation first requires adoption and then, where necessary, adaptation of the approach by all the agencies, organisations and professional groups contributing to services for children and families.

Policy and planning

In order for comprehensive children’s services to come together and share the same purpose and principles to support the delivery of services, government departments, national organisations and other stakeholders should be able to develop integrated policy and planning tools that lead towards locally applicable good practice models.

 

Service delivery

Organisations and institutions delivering services should work collaboratively to ensure that there is both coordination and continuity between the component parts of a pathway. Each service needs to understand their specific contribution to the care pathway and attempt to optimise their component parts based on best evidence and delivery by competent teams in the right place, at the right time.

 

Individual children and families

Children, young people and families should be fully involved in decision making within health care systems. This involvement depends on their level of understanding and maturity, but the individuals should feel competent in the relevant health issues in their lives.

 

The promotion of a child friendly health care approach would require all member states to recognise the importance of children’s rights—at all times and in all settings. Three levels of promotion would be required:

  1. I.

    promotion of children’s rights;

  2. II.

    promotion of the principles applicable to children’s health services;

  3. III.

    promotion of the child friendly health care approach, which integrates the principles into a practical model for service planning, delivery and improvement.

The success of child friendly health care will depend on an alignment of motivation, thinking and action at the three different levels, i.e. policy making, service planning and individual care.

In line with the WHO “Health in All Policies” approach, government organisations and other relevant stakeholders contributing to the health and wellbeing of children should work together and strive to continually improve the quality of their services—particularly their safety—the outcomes thereof and the experience/satisfaction of the users.

Policy makers should endorse the child friendly health care approach and adapt it into policies, service planning and practice, in order to drive improved effectiveness, efficiency, safety and equity within health care services. This process should be coupled to the development of relevant measures to monitor implementation.

Professionals should promote effective participation of children in improving their own health, taking part in decision making related to their care, planning health care activities and evaluating the results, according to their age and maturity.

Member states should exchange practices and experience, and promote international cooperation in the field of child friendly health care.

Synopsis and aide mémoire—the 5-4-3-2-1 approach

In order to help embed the key concepts of the child friendly health care approach into practice, a simple mnemonic has been derived based on 5-4-3-2-1: five principles, four component parts to the pathways, three pathway stages, two driving forces and one purpose—to improve children’s services.

Five principles

1. Participation

  1. a)

    individual decision making

  1. b)

    service improvement through feedback

  2. c)

    priority setting

2. Promotion

  1. a)

    all children

  2. b)

    vulnerable children

  3. c)

    children using health services

3. Protection

  1. a)

    all children

  2. b)

    vulnerable children

  3. c)

    children using health services

4. Prevention

  1. a)

    primary through promotion/protection

  2. b)

    secondary/tertiary—proactive care preventing complications or other disabilities

  3. c)

    quaternary—preventing services harming children

5. Provision

  1. a)

    journeys, pathways, networks

  2. b)

    evidence-based, competent practitioners, right place, right time

  3. c)

    measurement, feedback, action and learning

Four pathway components

1. Prevention

  1. a)

    primary, secondary and tertiary

  2. b)

    promotion, protection and education

  3. c)

    lifestyle, physical, socioeconomic

2. Identification

  1. a)

    screening

  2. b)

    surveillance

  3. c)

    awareness

3. Assessment

  1. a)

    child, family, community

  2. b)

    condition, lifestyles, determinants

  3. c)

    evidence

4. Interventions

  1. a)

    medical, surgical, psychiatric

  2. b)

    education, social care, criminal justice

  3. c)

    family, community, society

Three pathway stages

1. Initial

  1. a)

    considering the condition

  2. b)

    its impact on the child

  3. c)

    the consequences for the family and community-based interventions to tackle lifestyles and determinants of health

2. Review

  1. a)

    considering the condition

  2. b)

    its impact on the child

  3. c)

    the consequences for the family and community-based interventions to tackle lifestyles and determinants of health

3. Transition

  1. a)

    considering the condition

  2. b)

    its impact on the child

  3. c)

    the consequences for the family and community-based interventions to tackle lifestyles and determinants of health

Two driving forces

1. Alignment

  1. a)

    policy makers, service providers, users

  2. b)

    health, education, social care

  3. c)

    public, private, community sectors

2. Measures, feedback, action

  1. a)

    measures that matter and motivate

  2. b)

    analysis, feedback, reflection

  3. c)

    action innovation, evaluation and learning

One goal—improvement!

1. Improvement in outcomes and impact

  1. a)

    health

  2. b)

    inequalities

  3. c)

    sustainability

Practical conclusion

Ultimately, the purpose of implementing children’s rights in health care is to drive improvements in outcomes (create better health, reduce avoidable conditions) and reduce existing health inequities. The child friendly health care approach simultaneously improves the safety of services and patient satisfaction, as well as ensuring wise use of resources, improvements in value for money and sustainability. This is achieved by examining the system as a whole, putting patients at the centre of service design and integrated learning. The intention is that Government Health Departments engage with professional organisations and patient groups to consider the child friendly approach and then adopt and adapt the framework according to local circumstances.