Partnering with children and their families may require different approaches to partnering solely with adults.
Why does this standard need special consideration by health service organisations that provide care for children?
Partnering with children and their families may require different approaches to partnering solely with adults because:
- Children are more dependent than adults
- Children have more possible developmental states
- There is greater variability in children’s capacity to be involved in partnerships.
The delivery of care across the age and developmental spectrum for children has many implications for health service delivery, development of health literacy, child–family interaction, and the systems used for gathering and acting on feedback. Children and their families have a vital role to play, not only in making (or assisting the child to make) decisions about the health care needed for the child, but also in providing ongoing care to the child during and following their stay in hospital.
Engaging children and their families in the child’s care can present challenges to the workforce because of the child’s:
- Level of maturity and capacity to understand
- Previous experiences of health care
- Personality and behavioural characteristics
- Cultural background
- Primary language (and that of their family)
- Illness, injury or condition
- Needs and wants versus those of their family.
In addition, all states and territories have different legislative provisions on informed consent based on age, which inform local policy.
Criterion: Partnering with patients in their own care
Systems that are based on partnering with patients in their own care are used to support the delivery of care. Patients are partners in their own care to the extent that they choose.
Healthcare rights and informed consent
The Charter on the Rights of Children and Young People in Healthcare Services in Australia (the Charter) was developed to specifically cover the rights of children when receiving health care.7 The Charter outlines 11 rights aimed at ensuring that the care provided to children is appropriate and acceptable. Three key principles underpin the Charter:
- The primary consideration should be the child’s best interests
- All children are to be listened to and taken seriously
- The family is recognised as the fundamental decision-making unit in a child’s life.7
To improve the care provided to children, health service organisations may consider adopting the Charter. This would include:
- Allocating responsibility for implementation of the Charter to a senior individual or committee
- Building the requirements of the Charter into the organisation’s safety and quality systems, and processes of care for children
- Displaying the Charter in areas within the organisation frequented by children, such as paediatric units or play areas
- Providing accessible copies of the Charter in formats that meet community needs, especially for those with limited capacity to read and comprehend complex written text
- Providing education about the Charter to new members of the workforce responsible for providing care for children
- Using the Charter as the basis for discussions between clinicians and children about care planning and treatment
- Using play-based techniques when appropriate
- Adding specific questions relating to the Charter to consumer experience surveys.
Children may not have the legal or developmental capability to consent. Therefore, policies for consent could consider:
- Criteria for determining whether a child is competent and can provide consent, and the family’s role in providing consent
- The circumstances in which it is the right of a mature child to refuse treatment
- The roles and responsibilities of clinicians when obtaining consent from children
- The processes to follow and language to use when obtaining consent
- Legislative requirements and the legal constraints on children providing consent at different ages, and how they vary across states and territories
- Requirements for documenting consent obtained from a child
- The family’s role in providing consent
- Engagement and participation of families, legal guardians, consumer advocates and other support group representatives in developing the health service organisation’s systems and processes for obtaining consent
- Issues arising when the parents of a child are separated, or there are court orders in place
- Issues when there is a dispute between the parents or family and the child about treatment
- The role of informed assent from children
- The inclusion of children in health-related research.
Clinicians should understand their roles and responsibilities for obtaining informed consent from children, and have the education and training required to perform their role. These roles and responsibilities include:
- Understanding the legal and ethical obligations concerning clinical decision-making and obtaining consent
- Using age-appropriate strategies for engaging with children, and providing information about the benefits and risks of care
- Meeting obligations for confidentiality of clinical decisions in ways that take into account legal, moral, religious and ethical issues.
Sharing decisions and planning care
When care is to be provided to children, it is usually the family that gives consent. However, to reduce the risk of aggression and fright, the child must assent (agree) to the care. This requires the child to understand the condition and its treatment at a level appropriate to their maturity. Obtaining assent requires careful communication, and may include17:
- Supporting the child to understand their condition in a way that is appropriate to their developmental age
- Talking with the child and explaining what can be expected during their care
- Using clinical judgement and experience to assess the child’s understanding of their condition and the care they can expect to receive, and how they respond to this information
- Seeking agreement from the child to the care that is planned
- Giving serious consideration to the child’s view
- Informing the child whenever care is to be delivered without assent, or against the child’s preferences.
As children become adolescents, they should be allowed to take greater responsibility for determining their health care so that they move towards becoming the primary decision-maker.
As with informed consent, obtaining assent should be an iterative and interactive process in which information, goals and preferences are shared, and joint decisions are made.17
Criterion: Health Literacy
Health service organisations communicate with consumers in a way that supports effective partnerships.
Communication that supports effective partnerships
To support shared decision making that includes children and their families, policies, procedures and protocols for communicating and engaging with children and their families should be based on principles that:
- Are appropriate to the child’s age and developmental stage
- Build trust between the child and their family and clinicians
- Promote active listening and discussion about care preferences
- Provide timely information about treatment options, risks and the expected outcomes
- Include support from interpreters and other appropriate language services
- Enable, support and accept decision-making by the child and their family
- Include systems and processes to gain consent to share information with schools and other service providers to meet the child’s ongoing care needs
- Use interpreter services when necessary, and ensure that children themselves are not used as interpreters.
Children and their families should receive information about their health care that takes into account their level of health literacy. This information may relate to:
- Details about the benefts, risks and complications of diferent treatment options, including the administration and efects of diferent medicines and treatments
- Explanations of procedures or tests
- Infection prevention and control measures, such as the use of gowns or masks, hand sanitiser and handwashing techniques
- Education, advice and instructions for children and their families and any third-party providers about self-care and the management of risk factors
- Information on the long-term efects of treatment and medicines.
Health service organisations could use, identify or develop age-appropriate tools and resources to use when communicating with children and their families about the child’s health care. Examples include:
- Providing information on what to expect before admission
- Using play-based approaches, perhaps including dolls and teddies, when providing information to children
- Breaking down information into smaller elements and sharing those elements over time
- Playing instructional or demonstrative videos and using apps to explain planned treatments or procedures that might take place in hospital
- Using play therapy, music therapy and diversionary techniques to support children during procedures
- Using distraction rooms or professionals trained in distraction techniques
- Providing a picture dictionary of medical terms with simple definitions of diseases, instruments and medicines.
Criterion: Partnering with consumers in organisational design and governance
Consumers are partners in the design and governance of the organisation.
Partnerships in healthcare governance planning, design, measurement and evaluation
Consumer partnerships should aim to be representative of the community served by the health service organisation, especially those consumers who may be vulnerable or difficult to engage, such as children. It is important that there is appropriate engagement and consultation with children and their families on systems and processes that affect them and the care they receive.
Health service organisations may consider having a governance structure that:
- Effectively engages children and their families
- Has representation from children and their families to assist with the development, quality improvement and review of health services provided to children across the health service – for example, in emergency departments, mental health units and imaging units
- Includes mechanisms to maximise engagement with children, including one-of events, feedback through social media, and ongoing participation on boards and committees
- Includes the views of children and their families when planning new facilities or redesigning existing ones
- Reviews membership and terms of reference of committees and governing bodies to ensure that children and young people are represented
- Identifies local community or advocacy groups representing children, and engages them in discussions about consumer engagement strategies
- Consults with children and families to get feedback informally through discussions in waiting areas, at the bedside during clinical handover or as part of discharge procedures
- Creates a ‘critical friends’ group for paediatric-specific units or wards made up of past paediatric service users and their families.
Health service organisations could consider incorporating the views of children into training and education programs by:
- Inviting consumers with experience of caring for children or their families to speak to the workforce
- Displaying messages or artwork about a child’s experience of care in training and education materials
- Sharing with the workforce the results of child consumer feedback surveys, focus group sessions and interviews
- With appropriate consent, filming children talking about what is important to them in health care, and using these videos to educate the workforce.