Babies, children and young people's experience of healthcare

Why the committee made the recommendations

The committee were aware, based on their own knowledge and experience, that safeguarding is an important consideration that applies to all aspects of healthcare services, and so made an overarching recommendation to state this. Similarly, the committee were aware that it is necessary for all services to make reasonable adjustments as required by legislation in order to meet the needs of disabled babies, children and young people, and so made an overarching recommendation to state this.

Based on stakeholder feedback, the committee added an overarching recommendation to clarify the rights of children and young people to make decisions about their healthcare and to consent to treatment.

There was evidence from a number of reviews: that all discussion, support and information need to be suitable for the age, developmental stage and level of understanding for an individual child or young person; that, as children develop and mature, their healthcare needs and preferences change; and that determining needs and preferences is not a static one-off decision.

As a number of recommendations throughout the guideline relate to the use of digital resources, the committee clarified that alternative methods should be available as access to these digital resources is not universal.

How the recommendations might affect practice

The recommendations are in line with current practice and should have little impact on resources, but may mean extra time is needed to revisit needs and preferences on a regular basis, or to provide alternatives to online information.

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Why the committee made the recommendations

There was good evidence that children and young people like healthcare professionals to communicate in a friendly, compassionate and respectful manner, reading behavioural cues, giving them sufficient time, listening to them and getting to know them on a personal level.

There was good evidence that different methods of communication should be used when appropriate, and this includes using verbal and non-verbal communication, and identifying the best way to communicate for individuals, particularly those who have additional communication needs.

The committee were also aware of the need for healthcare professionals to ensure that different methods of communication are used if necessary to meet the requirement of the Mental Capacity Act 2005 that a person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been tried.

How the recommendations might affect practice

Healthcare professionals might need more time to communicate with children and young people and this could mean some consultation times are longer, which would create a resource impact for the NHS. Additional help to communicate may be needed (for example, use of foreign language or sign language interpreters) and that may also have a resource impact for the NHS.

Ensuring that all staff are competent to communicate effectively might also need additional time and resources for training and skill development.

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Why the committee made the recommendations

There was good evidence from the systematic literature review on the preferred sources of information, with in person face-to-face information provided by a healthcare professional one of the preferred and most trusted forms of information. The evidence showed that healthcare professionals should provide information clearly in a way that is easy for children and young people to understand, and that it is important that healthcare professionals consider when and how to deliver information, as sufficient information needs to be provided, but this should not be overwhelming. The evidence also showed that children and young people, and the parents of babies and young children, want information in a variety of formats, including written materials, websites and smartphone applications and any other digital sources, and that these sources should be clear and easy to understand and relevant.

There was evidence that children and young people would want their parents or carers to have information tailored to their condition and needs in order to provide support and look after them.

There was evidence that whatever the format, information should be age- and developmentally appropriate, and should be available in different versions (for example, easy-read versions) and languages to allow as many people to access it as possible.

The evidence from the focus and reference groups and some limited evidence from the national surveys reinforced the systematic literature review evidence, showing that the quantity of information should not be overwhelming, and that there is a need for clear, understandable verbal and written information.

How the recommendations might affect practice

The recommendations may mean additional time and resources are needed to deliver and produce information in suitable formats (for example leaflets, websites, apps) in partnership with children and young people. However, it was acknowledged that many services are already using a variety of alternative ways of proving information to children or young people and the overall resource impact in this area will be modest.

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Why the committee made the recommendations

There was evidence from the systematic literature review, focus and reference groups and from the national surveys that most children and young people want to be involved in making shared decisions about their healthcare, but that the level of preferred involvement may vary between different children, on different occasions and may change as children get older.

The committee were also aware of the requirement of the Mental Capacity Act 2005 that a person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been taken without success. Healthcare professionals therefore need to tailor their approach to discussions (with advice from other specialists or those who know the person well if necessary) to ensure this.

There was some evidence on children and young people's preferences for how the shared decision-making process should be undertaken, for example by starting discussions as soon as possible, making sure information is presented clearly, tailoring its complexity, providing it at a suitable pace and using decision aids if they are available.

The committee also used their knowledge and experience to make additional recommendations to adhere to these principles when making shared decisions with parents and carers on behalf of babies and young children.

How the recommendations might affect practice

Additional time may be needed to carry out meaningful discussions around shared decision making. Ensuring that all staff are competent to implement shared decision making effectively might also need additional time and resources for training and skill development.

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Why the committee made the recommendations

There was limited evidence that decision aids improve knowledge about risks and benefits and reduce decisional conflict, but as there was insufficient evidence to allow the committee to give advice on their use, a recommendation for research was made on risks and benefits. There was some evidence from the focus and reference groups that children and young people vary in their views about how much information they like to receive on risks. Based on this evidence, and on their knowledge and experience, the committee made recommendations on the best ways to discuss risk and benefits with children and young people, including pacing this information, having discussions without parents and carers, and ensuring understanding.

How the recommendations might affect practice

The recommendations might mean additional time and resources are needed to help children, young people and the parents or carers of babies and young children understand the risks and benefits of healthcare decisions. Ensuring that all staff are competent to discuss risks and benefits effectively might also need additional time and resources for training and skill development.

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Why the committee made the recommendations

No evidence relating to consent was found, but the committee discussed that children and young people have the legal right to consent to, or refuse, treatment as set out in UK law and the UN Convention on the Rights of the Child. These rights are dependent on their age and competence and as the committee agreed it was such an important principle, they included these details in an overarching recommendation at the beginning of the guideline.

The committee used their experience and expertise to make recommendations on how children and young people could be best supported to make decisions on consent. The committee also used their knowledge and experience of how differences of opinion over consent, assent or refusal of treatment should be approached. This could include involving other healthcare professionals, but the committee also recognised that the child, young person, parents or carers should be offered support so that they did not feel outnumbered in discussions.

There was some low-quality evidence on privacy and confidentiality, which showed that children are aware of the risks to anonymity and privacy with digital information applications, but that they also recognised that in some cases, it was valuable to share information (for example, with parents, or to allow peer-to-peer support). The committee therefore also used their experience and expertise on best practice at maintaining privacy (particularly when using digital or virtual methods for consultations, or with children or young people who needed additional support to communicate without their parents or carers), discussing private and confidential information with children and young people, and the sharing of information with parents or carers.

How the recommendations might affect practice

There are already examples of good practice across the NHS concerning consent, privacy and confidentiality, and these recommendations are designed to increase consistency throughout the NHS. Implementing these recommendations might mean extra time is needed for healthcare professionals to discuss and explain issues surrounding consent, privacy and confidentiality with children and young people. There may also be a need to consider the environment in which healthcare is delivered to provide privacy and ensure confidentiality.

Return to recommendations

Why the committee made the recommendations

There was evidence that children and young people want to be able to express their opinions independently from their parents, but they also value their parent or carers' presence or support. There was evidence that the extent of support they want varies depending on the circumstances and the child or young person, and that it should be discussed between parents or carers and their children. The committee were aware from their knowledge and experience that certain groups of children and young people did not have parents or carers to support them, and that it is particularly important that these children and young people should be offered alternative support.

How the recommendations might affect practice

The recommendations are in line with current practice and should have little impact on resources, but may need extra time to have these discussions, and to see children with their parents or carers and separately.

Return to recommendations

Why the committee made the recommendations

There was evidence that children and young people have differing preferences for the support they wish to receive from healthcare professionals, so this should be personalised based on their preferences at any time (as these preferences can change depending on different factors). There was also evidence around needing to build a trusting relationship. Based on their knowledge and experience, the committee agreed that it was essential that healthcare professionals support children and young people's rights and advocate for them where necessary. There was also evidence that children and young people appreciate support to identify and use coping techniques, and to be advised on other sources of support.

How the recommendations might affect practice

Additional time may be needed to build trust, discuss and provide the support according to the preferences and needs of children and young people.

Return to recommendations

Why the committee made the recommendations

There was evidence from the systematic literature review and the focus and reference groups for strategies that would enable children and young people to advocate for themselves with respect to their healthcare and related decisions. This includes providing time, space and adequate information.

There was evidence that some children and young people felt as though healthcare professionals have a preconceived idea of their ability and motivation to engage with healthcare decisions. This often results in missed opportunities to encourage vulnerable children and young people to engage in their care and advocate for their choices.

The evidence also showed that engaging children and young people in feedback, service design and other activities could improve and facilitate their self-advocacy skills.

Based on the evidence and their knowledge and experience, the committee identified approaches to empower children to advocate for themselves.

How the recommendations might affect practice

Additional time may be needed to discuss and provide the adequate support to children and young people so they can be empowered to advocate for themselves.

Return to recommendations

Why the committee made the recommendations

The recommendations reflect current UK legislation in respect of access to independent advocates in certain situations for children and young people. Based on their knowledge and experience, the committee recognised the potential benefits to children and young people of independent advocacy in wider healthcare situations, not currently covered by the legislation. These benefits include support to understand healthcare processes and procedures, to express views and opinions, and with decision making.

There was evidence from an expert witness and the focus and reference groups that eligible children and young people may have limited knowledge about independent advocacy services. Therefore, they should be provided with this information and supported throughout the process.

There was evidence from the expert witness and the focus and reference groups about the role of independent advocates, which involves supporting children and young people in decisions about their healthcare and that, in order to be most effective, independent advocates should take time to build a trusting and confidential relationship with children and young people.

As there was no evidence from the systematic review of the literature for this review, the committee made a recommendation for research on independent advocacy.

How the recommendations might affect practice

The recommendations on access to an independent advocate are in line with current UK legislation, with little additional impact on resources. However, the suggested expansion of this service to children and young people who are not adequately represented by parent and carers may lead to an increase in the number of independent advocates needed by NHS services, which will need an increased level of funding. There may be an increased amount of time for healthcare professionals to facilitate this use of independent advocates.

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Why the committee made the recommendations

The qualitative and quantitative evidence identified 4 aspects of healthcare that were important to children and young people but which were not covered in other evidence reviews. These were food, pain-related anxiety, staff uniforms and healthcare clothing, and religious, cultural and spiritual support. Based on their expertise and experience, the committee made additional recommendations on these topics. The committee agreed that the recommendations on religious support related to maintaining usual activities, and therefore they placed this recommendation in that section of the guideline.

As there was limited quantitative evidence on the elements of healthcare that matter most to babies, children and young people to create a positive experience of healthcare, the committee made a recommendation for research on improving healthcare experience.

How the recommendations might affect practice

The recommendations reflect best practice and may reduce variation in practice.

Return to recommendations

Why the committee made the recommendations

There was some evidence that children and young people are keen to contribute to the design of healthcare services, and appreciate the opportunity to do so. There was also evidence that the children and young people recognise there could be practical difficulties with involvement (for example, time, travel, number of events, and content not being age- or developmentally appropriate). There was evidence that ways to obtain feedback should be age- and developmentally appropriate. There was evidence that children and young people want their views to be taken seriously, and that they appreciate being told how their input had changed practice.

The committee and stakeholders identified that there may be particular groups who may be less likely to be involved in the design of healthcare services and so recommended that the views of these groups should be actively sought. However, the list is not exhaustive and other groups may be identified according to local circumstances or demographics.

How the recommendations might affect practice

There are already examples of good practice across the NHS, but practice is inconsistent. These recommendations aim to standardise how children, young people, parents and carers should be involved in the design of services, to encourage more consistent practice across the whole NHS.

Implementing this across the NHS might mean increased resources are needed to develop the tools, identify participants, aid involvement, and evaluate and feedback the results.

Return to recommendations

Why the committee made the recommendations

There was some evidence from the focus and reference groups that children and young people are keen to provide feedback, that they are willing to use a variety of methods to do this, and that surveys should be quick and easy to complete. The evidence also showed that children and young people prefer giving their feedback at or towards the end of treatment but based on their knowledge and experience, the committee agreed this should be at various points in treatment. There was a very small amount of evidence from the national surveys on the problems children and young people had had using complaints systems. The committee also used their own knowledge and experience on helping people give feedback to optimise responses.

The committee and stakeholders identified that there may be particular groups who may be less likely to be involved in providing feedback on healthcare services and so recommended that the views of these groups should be actively sought. However, the list is not exhaustive and other groups may be identified according to local circumstances or demographics.

As there was very limited evidence from the systematic review of the literature on measuring children and young people's experience, the committee made a recommendation for research on measuring experience.

How the recommendations might affect practice

Experience may already be measured in a number of different ways across the NHS and these recommendations will increase measurement of experience, reinforce best practice and make practice more consistent.

Implementing this across the NHS might mean more resources are needed to co-produce the tools, identify participants, aid involvement and evaluate and feedback the results.

Return to recommendations

Why the committee made the recommendations

There was some evidence from young people about their preferences, and from parents of babies in neonatal units, and the committee agreed that all babies and young children (represented by their parents), children and young people, should be able to express views about the preferences for place of care. The committee used this and their own knowledge and experience to agree how settings should be appropriate, comfortable, welcoming and acceptable to the people who need to use them. There was evidence that young people prefer their care environment to be age-appropriate, and that they may feel uncomfortable in paediatric settings aimed at young children. There was also evidence that they like to be able to meet visitors in an appropriate space, to have areas for recreation facilities, to have adequate signs, and for there not to be too much noise. They also expressed wanting to feel safe in healthcare environments.

There was evidence from parents or carers of babies about the need for privacy, comfortable furniture and furnishings, and facilities so they have the option to stay with their babies. Although there was no evidence about privacy for children and young people, the committee agreed that offering privacy is important, based on their knowledge and experience.

How the recommendations might affect practice

The recommendations aim to make best practice more consistent across the NHS. Some changes to improve the healthcare environment might be easy to make, but changing or redesigning healthcare environments can be an expensive process, and some of the recommendations could need considerable resources to implement.

Return to recommendations

Why the committee made the recommendations

Based on their knowledge and experience, the committee made recommendations on the importance of determining what usual activities were important to children and young people, and making adjustments to allow these to continue. The committee agreed that providing support to continue with usual activities would need to be personalised to account for different needs, preferences and developmental stages. The committee recognised the benefits to the wellbeing of children and young people of continuing with usual activities, which may include a reduction in boredom, anxiety and distress. There was evidence that some children prefer to receive help with personal care from their family, as would happen if the child were at home. There was also evidence that children and young people want to continue with social activities and keeping in touch with their friends. There was no evidence from the systematic literature review specifically about Wi-Fi access but the committee agreed that the ability to instantly contact friends was a part of everyday life for most children and young people and this was reinforced by evidence from the focus and reference groups and the national surveys.

The evidence on educational support reinforced the committee's experience that maintaining educational provision and liaison with education services is very important.

There was evidence that some children and young people found religious or spiritual support or beliefs helpful when they were unwell. Other aspects from this evidence are reflected in the recommendations on improving healthcare experience, where this evidence is described in more detail.

How the recommendations might affect practice

The recommendations aim to reduce variation in practice across the NHS, and might mean extra staff time or changes in practice are needed to implement them.

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Why the committee made the recommendations

There was evidence from the systematic review of the literature about factors that could be barriers for children and young people to access health services. This included factors relating to practical aspects of accessing healthcare such as location and timing of appointments, as well as trust and relationships with healthcare professionals and lack of knowledge about when to access healthcare, and what services to access. The focus and reference groups also provided evidence about the perceived barriers and these included fear and embarrassment, being too busy to access healthcare or not wanting to miss out on school or social activities, and being aware of the capacity issues within the NHS. The committee then used this evidence to make recommendations designed to overcome these barriers. The evidence from the national surveys also identified that certain groups of children and young people may need additional help and support to access and navigate the health system.

How the recommendations might affect practice

Additional resources may be needed to promote and deliver accessible and flexible services.

Return to recommendations

Why the committee made the recommendations

There was good evidence that children and young people prefer to see the same healthcare professionals whenever possible, and that this promotes improved engagement and continuity of care. The committee were aware that children and young people prefer to be able to contact their healthcare professionals or teams directly.

There was good evidence that children and young people do not want to have to repeat their healthcare history on multiple occasions, and that good and timely communication between healthcare professionals, services, and children and young people and the parents or carers of babies and young children could help with this. There was also some evidence for the use of different methods to help improve communication and continuity of care, and in particular the use of electronic health records.

How the recommendations might affect practice

There are some electronic and paper methods to improve communication already in use, including electronic health records. Implementing more integrated systems to share information with and between healthcare professionals, other services and children and young people or the parents and carers of babies and young children will have resource implications for the NHS. In addition, there may be a need for improved administration support to help with the sharing of information, which will also have some resource implications.

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