Healthcare professionals should involve children and young people in decisions about their healthcare in ways that are appropriate to their maturity and understanding. Some children and young people will be able to give informed consent themselves, some will be able to contribute to the discussion, and others may not be able to be involved at all. For more information, see NICE's information on making decisions about your care.
A parent or carer, who has parental responsibility for a child (as defined by the Children's Act 1989), will have a key role to play in planning and making decisions about their child's health and care, particularly when they are young. As children grow older and develop the maturity and understanding to make decisions for themselves, that role will diminish, particularly if the child wants it to. Where relevant, parents and carers should be given information and support to enable them to do this, as set out in the NHS Constitution and summarised in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding that should be used alongside this guidance.
1.9 Maintaining usual activities
1.9.1
Give children and young people ongoing opportunities to identify aspects of their lives that are important to them (for example, physical, social and recreational activities, schooling and education, their developmental, cultural and emotional needs).
1.9.2
Discuss with children and young people, particularly those with ongoing health needs:
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how their health condition and their healthcare will impact on their ability to engage in usual activities
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what their expectations and goals may be for their future involvement in usual activities, and how they can be helped achieve them.
1.9.3
Ensure that babies, children and young people are able to continue with their usual activities of daily life with minimal disruption while receiving healthcare and, when clinically appropriate, make reasonable adjustments to their environment to support this (for example, providing a quiet space for studying).
1.9.4
In an inpatient setting, ensure free internet access over Wi-Fi, and that any Wi-Fi codes or passwords are freely available so that children and young people can maintain their usual contacts and networks.
1.9.5
Advise children and young people that use of social media or technology (for example, phones, noisy computer games) must not compromise the privacy or the environment of other people.
1.9.6
Recognise that the wishes and needs of each baby, child and young person to engage in the activities they have identified as important to them will vary between individuals and over time. Integrate these needs into the delivery of healthcare.
1.9.7
Make sure that the baby, child or young person's usual support networks (for example, parents and carers, siblings, partners and friends) can be involved in maintaining activities of daily living (for example, changing nappies, washing, getting dressed, eating) and other usual activities.
1.9.8
Ensure coordination between healthcare, education and social care to maintain an individual's usual activities, including education and learning. This could include education support roles, Early Help or making adjustments such as scheduling treatment appointments around school commitments.
1.9.9
Help children and young people to use cultural, spiritual or religious beliefs that they find helpful in their lives as a source of support if they wish. This could include facilitating religious activities such as prayer time, or letting them know about chaplaincy services or other religious support available.
Terms used in this guideline
This section defines terms that have been used in a particular way for this guideline. For other definitions, see the NICE glossary.
Accessible
Something (for example, a service or information format) designed in a way so that people who have a disability or impairment are able to use it with a similar level of time, effort and skill needed as someone who does not.
Assent
Agreement given by a child or young person to a course of action or procedure, when they are not legally empowered to give consent.
Consent
Agreement (which can be verbal, non-verbal or written) to a course of action or procedure, after a discussion of the risks and benefits, when they are legally empowered to give consent.
Containment holding
Placing both hands firmly but gently on a baby and holding the position very still, to provide reassurance and comfort.
Cultural sensitivity
Knowledge, awareness and respect for other people's cultural background, identity and differences, without making assumptions about them.
Focus and reference groups
A series of focus and reference groups with children and young people were held to obtain their views and opinions. These views and opinions were considered by the committee as part of their review of the evidence.
National surveys
A review of recent national surveys of children and young people's views on healthcare was carried out. The findings of these surveys were considered by the committee as part of their review of the evidence.
Non-judgemental
Not criticising or demonstrating a negative attitude about another person's feelings or actions, based on personal opinions or personal biases.
Parents or carers
Parents or carers refers to the primary caregivers for a baby or child at any given time. This can include birth or adoptive parents with parental responsibility, other members of the extended family who provide care such as siblings, grandparents, aunts and uncles, others nominated by the parents, or legal guardians. For looked-after children or those who lack mental capacity, it can also include those acting instead of parents such as a social worker, key worker, foster carers or guardians. It does not refer to nurses, healthcare assistants or other healthcare professionals who are acting in their professional capacity.
Positive touch
Human touch that aims to give babies the experience of touch that is not for a clinical purpose, but is given tenderly, lovingly and gently, and that which responds to and does not ignore their behaviour.
Usual activities
Activities that form part of a baby, child or young person's daily life and which may be disrupted by illness or the need to access healthcare services. This may include activities of daily living (bathing, showering, eating), interactions with family and friends, social and emotional development, education and schooling, sports, hobbies and interests, social activities and use of social media.