Dr Rhian Croke
10.6.24
What does a Children’s Rights Approach (CRA) mean in the context of health services? In short, it means that every policymaker or practitioner working in health services should consider children’s rights in all their decisions and actions. It means giving consideration to all the rights set out in the United Nations Convention on the Rights of the Child (UNCRC) in health service planning and delivery.
However, integrating children’s rights into decision-making and implementation, seeing children as rights holders and ensuring their rights are met, takes a long time to embed in health services.
In this blog I will consider a CRA to health services, and offer some reflections and conclusions from my research with a Welsh Health Board on its efforts to implement a CRA (i).
Embedding children’s rights
A review of the literature confirms that health authorities across Europe are struggling to embed a CRA. One Health Board in Wales has sought to embed children’s rights, taking the admirable step of making a high-level commitment to children’s rights, through: the adoption of a Children’s Rights Charter; establishing a high-level strategy group for children; and electing a champion for children to work with the Head of Nursing to lead on this work.
However, high-level adoption of a Children’s Rights Charter and senior level commitment cannot be just symbolic. On examination of the Health Board’s work, it became evident that children’s rights were not being systematically embedded into health care decision-making and children were not put at the forefront of developments. There was an absence of children’s rights impact assessments of policy or budgets to inform decision making.
As one Senior Health Manager outlined:
‘Although we have a Children’s Rights Charter it is not fully embedded into all policy statements/documents.’
The approach to embedding children’s rights in health care was also not well coordinated. It was evident that children’s rights were seen as the remit of paediatrics/acute hospital-based children’s services, and not the responsibility of everyone across all health services, e.g., therapy services, primary care, general surgery, ENT, orthopaedics, radiology etc. There were also insufficient numbers of staff trained in child health and children’s rights to ensure that children and their rights were central to decision-making.
While children’s rights training was available, this was only being delivered to nursing staff. It was clear that much work needed to be done to strengthen the capacity of all health care professionals and managers to understand how to put the UNCRC into practice. A range of health professionals who participated in my research asked for mandatory children’s rights training. As one Senior Manager communicated strongly:
‘There should be mandatory children’s rights awareness training and updates for all staff including the Executive Board.’
Equality and non-discrimination
With regards to equality and non-discrimination to children, the literature is quite clear that children face discrimination as a social group as well as multiple and intersecting discrimination as members of different groups of children. This affects their ability to access their right to the highest attainable standard of health and health care (Article 24 of the UNCRC) (ii). It also critically affects their access to medicines and essential services that can both sustain and prolong life.
In the context of the Health Board case study, while there was senior level commitment to children’s rights and some children’s rights training, it is concerning that the research revealed that some children were being treated unfairly and discriminated against by professionals on a range of different grounds, e.g. age, gender, race, disability.
There were also concerns that services should be better developed that were children-friendly and age appropriate and took into full consideration each child’s individual needs. As some young people communicated:
‘I had to fight for drs to diagnose and believe condition CFS ME… they mostly talk to the person you come with’.
‘Treated unfairly because of my behavior. Learning needs.’ It was also not clear what proportion of health expenditure was allocated to children, to help assess whether children are being discriminated against or not, as a group, in health care budgetary decision-making. What has become increasingly evident, is that adult services often get priority and therefore a more significant allocation of spend. This point has been made very recently in relation to child health, with RCPCH Wales, sharing evidence that children are waiting disproportionately longer than adults for health services, arguing that spending is skewed against the young. Similarly, this issue was identified by Mind Cymru in an earlier report that children are waiting longer for mental health services.
Participation
The literature is clear that children are often excluded from, and powerless to influence decisions that affect them in the health care context. This is set against evidence that children want to be included in health care decisions, they don’t want to be patronized and want information in advance, in a language that they can understand.
Evidence also confirms the importance of ensuring a child’s right to be heard to reduce conflict between caregivers, professionals and the child, and to improve the quality of services and children’s own protection and self-esteem, and this has a positive impact on health care treatments and outcomes.
My evaluation of the Health Board was positive for the most part, children trusted and perceived health professionals to be friendly, they also believed that the health professionals listened to them and gave them the chance to ask questions. However, many children did not understand what health professionals were saying to them and some children believed they could have been better included in the medical decisions. It was also clear from the evaluation that younger children were scared and nervous and wanted to be given information in advance of appointments and procedures and wanted more opportunities for play and child-friendly facilities. The following quotes reflect some of the children’s concerns:
‘Make it less formal. Ensure you understand. Ask me what I think is wrong’.
‘When visiting the doctor, I get scared the reason why I get scared is because I worry what they gonna do’.
With regards to children’s participation in the monitoring and evaluation of health services by the Health Board, it was very positive that mechanisms had been created to support child patient feedback, however this was primarily in-patient or acute services. It was also positive that the Health Board had established a youth board to advise on the monitoring and evaluation of health services from a young person’s perspective. In particular, there was evidence of a successful process of the young people doing a ‘15 Steps Challenge’, an evaluation of what can be improved on hospital wards from a young person’s perspective. However, this youth board is not supported by core funding, so is not embedded or integrated into the system of reporting to senior health directorate decision-making.
Empowering the child
To be able to access and exercise their rights, children need to be empowered through education, information, provision of resources to support their capacity to claim those rights. The UN Committee on the Rights of the Child communicates the importance of health promotion information that is child friendly and appropriate. The health board had adopted innovative methods to communicate with children via video journeys through health services, and education in schools. Children’s Rights Charter leaflets were displayed in health service delivery points, but primarily in acute services.
There were, however, concerns that there was insufficient information on rights for children with learning or cognitive impairment or other disabilities. There were also concerns that materials should be adapted to the language needs of different ethnic groups and more child-friendly materials should be made available. As one Senior Manager communicated:
‘Not all ethnic minority or special needs are catered for and few ‘child friendly versions of documents outside of acute services.’
The principle of empowerment recognises the importance of the evolving capacities of the child and their right to control their health and body and to make decisions and choices. The wider literature, however, raises concerns that health professionals generally demonstrate traditional, paternalistic and welfare orientated conceptualizations of the relationship between the professional and the child. They tend to see children as in need of protection, which often denies their voice and agency, and results in the professional determining what is in a child’s best interests without always giving consideration to the child’s views. The wider research also suggests that health professionals are more likely to decide that a child is competent to make decisions about their health care, if the child’s decision conforms to their own ideas of what is in the child’s best interests.
The quote below from a child in the Health Board evaluation captures the overarching findings from the literature rather well, conveying how important it is to empower children in the health care context:
‘I didn’t know that I had the right to information in health or the right to have my say. I though the doctor’s word was final.’
It was also apparent that a number of children’s rights were not being respected in children’s interaction with health services, e.g. rights to privacy and to consent, and it was also clear children did not know how to make complaints.
Accountability to children
All health service professionals must be accountable to children, including through effective monitoring of services against children’s rights standards, performance indicators that include children’s rights, codes of professional practice rooted in children’s rights and sanctions for unsatisfactory performance, child friendly complaints systems. From a review of the literature, it is evident that health care practice accountability is multi-layered, complex and fragmented and incredibly difficult for children to navigate.
It was clear from my evaluation of the Health Board that although a high-level commitment had been made to children’s rights, they needed to do more to monitor if children’s rights were being respected, protected and fulfilled across health services. One Senior Manager in the Health Board communicated that ‘they were not aware of any monitoring’.
The Head of Nursing, however, reported that she had successfully managed to secure a Health Board commitment to children’s rights performance indicators in all nursing staff’s job descriptions (albeit not other health professionals). This, it is hoped, would make nursing staff more accountable to children’s rights in their day-to-day work.
There was limited independent advocacy or access to external advice or legal representation for children wanting to challenge the Health Board. And although there was a complaints system, it was evident that children were not aware of it, and it was not child friendly. All children should be able to access a child-friendly complaints mechanism, so they are able to claim their rights and hold authorities to account.
Final reflections
The reflections in this blog are intended to generate thinking on what it means to adopt a CRA to health services practice. I hope these reflections on some of the positives, as well as the less satisfactory aspects of a Health Board’s efforts to implement a CRA, will help other health authorities consider what they could be doing to support the implementation of children’s rights.
This case study emphasises in particular, that senior level commitment to children’s rights has to be backed up with a sufficient level of human and financial resources and systems in place to prioritize and fully embed a CRA.
Endnotes
i) This blog is drawn from Dr Rhian Croke’s PhD thesis that gives a detailed analysis of a Children’s Rights Approach to Health Services – using one Health Board as a case study. The field research was conducted in 2019-2020, so it is possible that there have been changes in practice by the Health Board since this time.
Together (Scottish Alliance for Children's Rights) 