The importance of shared decision-making in paediatric care
Shared decision-making (SDM) is a collaborative approach to healthcare that involves patients, families, and healthcare professionals working together to make informed decisions. This partnership is particularly important when caring for children and young people (CYP), as it ensures their values, preferences and goals are central to the decision-making process.
The National Health Service (NHS) constitution for England and key UK consultations, such as ‘No decision about me without me’, have emphasized the need for SDM in healthcare. The National Institute for Health and Care Excellence (NICE) has also published guidance on the topic, highlighting the benefits of this approach.
Research shows that when SDM is done well, it can reduce decisional conflict, improve knowledge, and enhance patient satisfaction. For CYP, it is crucial to consider issues such as safeguarding, consent, and the role of parents or carers when including SDM within a care pathway. Developing autonomy is a key component of the transition process before transfer to adult services.
Barriers to shared decision-making in practice
Despite the clear benefits and policy emphasis on SDM, CYP and their parents/carers are still not always involved in healthcare decision-making. This can be due to a range of barriers, including:
- Preconceived ideas about CYP’s abilities: Healthcare professionals may make assumptions about a child or young person’s capacity to express their views and opinions, particularly if they have communication difficulties or disabilities.
- Power dynamics: The roles of parents or carers can sometimes create barriers that reduce the scope for CYP to express their wishes and feelings.
- Lack of education and support: CYP and families may not have the knowledge or confidence to actively participate in decision-making.
- Time pressures: Shorter consultation times can make it challenging for healthcare teams to engage CYP and families in meaningful discussions.
To overcome these barriers, healthcare teams need access to practical tools and resources that empower CYP and families to be actively involved in their care.
Practical tools to support shared decision-making
The Ready Steady Go (RSG)-TIER Collaborative has developed a range of resources to help healthcare teams implement SDM in their practice. These include:
Ask 3 Questions
The ‘Ask 3 Questions’ tool provides a simple framework for CYP and families to engage in discussions with healthcare professionals. The three key questions are:
- What are my choices?
- What is good and bad about each choice?
- How do I get support to help me make a decision that is right for me?
Encouraging CYP and families to ask these questions helps ensure they receive the information they need to make informed decisions about their care.
‘Making a decision together’ record of discussion
This resource provides a structured way for healthcare teams to document the decision-making process and the agreed next steps. By recording the options discussed, resources used, and the final decision, it helps ensure transparency and good record-keeping.
SDM Q9+1 tool
The SDM Q9+1 is a validated measure that can be used to assess patient and family satisfaction and engagement with the shared decision-making process. It includes an additional question designed to gather feedback on the usefulness of the information provided.
These tools can be adapted for use across a range of healthcare settings and clinical conditions, empowering CYP and families to be active partners in their care.
Co-producing resources with patients and families
To ensure healthcare resources are truly tailored to the needs of CYP and families, the RSG-TIER Collaborative has adopted a co-production approach. This involves working closely with patients, carers, and healthcare professionals to design, develop, and implement tools and interventions.
For example, the ‘Making a decision together: Dialysis choices’ resource was co-produced by a UK-wide multidisciplinary team that included CYP, parents/carers, and healthcare professionals. This collaboration ensured the final product was accessible, informative, and truly responsive to the needs of the target audience.
By involving patients and families throughout the development process, co-production can transform healthcare resources from something done to patients, to something done with patients. This can lead to better quality information and more empowered and engaged patients.
Empowering children and young people to advocate for themselves
In addition to providing practical tools, healthcare teams can also empower CYP to advocate for themselves and their needs. This might involve:
- Creating a flexible and interactive environment that encourages CYP to express their views.
- Ensuring healthcare professionals have an awareness of each child or young person’s preferred method of communication.
- Validating CYP’s opinions and involving them in service design and improvement.
- Providing education and support to help CYP develop the skills and confidence to participate in decision-making.
By embedding these approaches, healthcare teams can help CYP develop the autonomy and self-advocacy skills they need to play an active role in their care, both now and in the future.
The role of digital tools in shared decision-making
The increasing availability of patient portals, where families can access their own medical records, may also help facilitate SDM. While there are valid concerns around safeguarding and potential increases in patient anxiety, early research suggests that patients can have positive and empowering experiences when using these tools.
Similarly, digital resources like videos and animations can be a valuable addition to traditional written information. These formats may be particularly helpful for families with low literacy levels or language barriers, though more research is needed on their effectiveness.
Measuring the impact of shared decision-making
To ensure SDM is being implemented effectively, healthcare teams should regularly evaluate their practice. The SDM Q9+1 tool is one way to gather feedback from patients and families on the quality of the decision-making process and the usefulness of the information provided.
Documenting the decision-making process, including the options discussed and the final agreed plan, is also important for audit and transparency purposes. This can help healthcare teams identify areas for improvement and ensure they are meeting the needs of the families they serve.
Conclusion
Shared decision-making is an essential component of high-quality paediatric care. By providing practical tools, empowering CYP to advocate for themselves, and co-producing resources with patients and families, healthcare teams can help ensure that children, young people, and their families are active partners in making informed choices about their care.
To learn more about shared decision-making and access the RSG-TIER Collaborative resources mentioned in this article, visit https://www.stanleyparkhigh.co.uk/.
