Consumer Enablement Guide

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Children and Young People

The principles, strategies and approaches used to support consumer enablement apply to children and young people, as well as their parents, carers or guardians.

Children

Many children have chronic diseases and conditions that require long-term management, such as allergies, asthma, diabetes, epilepsy, cerebral palsy, cystic fibrosis and cancer.1

Poor management of these conditions can have a significant impact on the social, psychological, educational and physical development of a child. It can also affect the wellbeing of the parents and other family members.1

The NSW Strategic Plan for Children and Young People aims to empower children to be involved in decisions that affect them.2

To do this, you can encourage children to:

  • learn about their chronic condition
  • be involved when you are discussing their health and treatment with their parents
  • ask questions about their health
  • take an active role in managing their condition, such as monitoring their symptoms, telling their parents when something changes, and knowing when to take their medications.

Although they cannot give legal consent, a child is an expert in how they feel and how their condition affects their life. Their involvement and preferences should be valued and considered. A child’s level of involvement will vary depending on:

  • their age and ability to consent
  • their cognitive development stage
  • their individual maturity and circumstances
  • the nature and complexity of their condition, treatment or procedure.

When working with children, you can use teach-back to check if the child remembers and understands what you have said.3

Teach-back can be used with people of all ages and levels of enablement. It involves:

  • explaining one concept or option
  • asking them to explain it back to you
  • clarifying if necessary until they understand
  • moving onto the next concept or option.

The Sydney Children’s Hospitals Network and ACI Paediatric Network also have useful resources for working with children and their parents.

Teenagers and young adults

Adolescence is a critical time for building enablement and reinforcing positive and healthy behaviours. The health and social behaviours of a young person is a strong predictor of how they will behave later in life, and the attitudes and beliefs developing during this time can be difficult to change.4

As children get older and have more experience managing their conditions, they should become more involved in their healthcare. In most circumstances, parents can make decisions about their child’s healthcare until they are 18 years old, however in NSW there are some medical decisions a young person can make from the age of 14.5

Young people also need to transition from child to adult health services, usually between the ages of 16 and 18. A smooth transition and positive experience at this time can build trust, self-confidence and knowledge. This increases their ability to self-manage their condition, access healthcare services, work with health professionals and make healthy choices in their adult life.

Making the transition

There are seven key principles for transitioning young people from paediatric to adult healthcare.

  1. A systematic and formalised transition process
  2. Early preparation
  3. Identification of a transition coordinator or facilitator
  4. Good communication
  5. Individual transition plan
  6. Empower, engage and enable young people to self-manage
  7. Follow-up and evaluation.6

Conversations about the transition to adult healthcare services should start early, so young people and their parents have plenty of time to feel prepared and comfortable with the changes. Parents are the experts in their child’s health and the most important source of knowledge and skills for managing their condition. During this transition, they pass on this knowledge to their child.

Transition takes time. Clinicians and parents should start to bring up the topic of transition with young people in early adolescence, so they are well prepared by the time they move to adult health services.

ACI Transition Care Network

The transition period can be hard for parents, as their role changes from managing their child’s health to supporting and advising. Having control over their child’s healthcare can often help them manage worry and stress, so letting go can be difficult.

It is a good idea for young people to have a transition plan, which should be developed with their parents, teachers, doctors and other health professionals.7 The plan can outline their goals for integrating their health with everything else in their life, such as education, career, independent living and relationships.

When developing the plan, the young person will need to consider their strengths, weaknesses, skills, support needs, talents, interests and preferences. They can then work out how they will develop the knowledge and skills they need to achieve their goals.

Trapeze is free service by the Sydney Children’s Hospitals Network that helps young people transition from a children’s hospital to adult healthcare services. ACI also has a Transition Care Network and resources to help you deliver transition care services.

Transition care is not just about managing challenges, it is also about the young person’s growth and ability to gain independence and control over their life and health. Remember to highlight the positives, celebrate milestones and reward steps towards self-management of their condition.

How to work with young people

Young people should be encouraged to take an active role in conversations and decisions about their healthcare as soon as they are able. This will help them develop:

  • high health literacy
  • confidence to manage their condition and navigate the health system
  • self-care, communication, assertiveness, self-advocacy and decision-making skills
  • the ability to maintain health behaviours in their adult life.

The Sydney Children’s Hospitals Network, NSW Youth Health Framework 2017-24 and Young Australians: Their Health and Wellbeing 2011 may be helpful when working with young people.8 9

Strategies

The following strategies and approaches may also be useful when working with teenagers and young adults.

Person-centred care

Ask questions about what else is going on in their life that might be affecting their physical or mental health, such as family, friends and school. You may also like to talk about what affects their motivation or ability to access healthcare and manage their condition.

Open communication and trust

Young people often have questions but do not want to be the one to raise sensitive issues, especially in front of their parents. You can help by communicating sensitive issues proactively and providing information they may be afraid to ask about.

Remind them it is ok to ask you about anything that could affect their health. This support will help them understand their options and the risks associated with behaviours, so they can make informed choices. Topics you may like to discuss include the following.

  • How recreational drugs and alcohol could affect their condition. For example: What increases seizure risks for epilepsy? How does smoking tobacco or cannabis affect asthma? How do medications interact with recreational drugs and alcohol?
  • Diet and nutrition. For example: What are the risks of skipping meals or binging on cake?
  • Physical changes, sexual health and contraception.
  • Mental health or emotional wellbeing. Many young people experience depression, anxiety and irritability and may have problems with impulse control and anger management, but are afraid to ask for help.
  • How their condition has affected their family. For example: How is everyone coping and would family counselling help?
  • How a creative outlet can help manage stress, emotion and pain, such as journaling, painting or music.

As teenagers we want to have control and independence, but chronic disease makes us so much more reliant on our parents.

Health literacy

Health literacy is how well individuals can access, understand and apply health information, so they can make good decisions about their health. All young people need to develop high health literacy, so they can manage their health and wellbeing throughout their lives.

For children and young people, the primary source of healthcare information is usually their general practitioner, paediatrician or specialist. They may also learn from peer support networks with people who share a similar health condition or experience.

Many young people can ask, search for and understand online health information quite confidently, but they often do not have the skills to critically evaluate the information and work out if it is credible.14 These skills are important for developing health literacy and supporting enablement.

You can develop these skills in young people, by providing them with credible information, or discussing information they have accessed. This education should:

  • combine knowledge and empowerment
  • be collaborative and interactive
  • draw on personal experience
  • examine health issues in a broader social context
  • develop skills for analysing, communicating and applying health information.

You can also use techniques like teach-back to reinforce understanding, recommend health education, encourage them to ask questions about what they have read or heard, and encourage their involvement in peer support groups.3

Psychological support

Adolescence is the most common life stage for mental health disorders to develop.11 Mental health issues account for the highest burden of disease for Australians aged 12-24 years old.12 Young people with physical health problems are more likely to have behavioural or psychological problems, often due to the extra challenges they face in their life.13

They are also at greater risk of:

  • isolation
  • bullying
  • discrimination
  • low self-esteem
  • learning difficulties.

These can trigger anxiety, depressive disorders and inappropriate responses to stress. Psychological distress caused by the impact of chronic disease on a person’s life is often more profound in young people than older people.14

To help young people stay mentally healthy, you can:

  • ask about their psychological wellbeing
  • recommend or refer them to support services
  • recognise that their needs may change over time
  • promote positive coping behaviours
  • recommend or refer support for their family, who may benefit from support and coping strategies for their carer or supporter role.

The following support services may be helpful.

Peer support

Support from people with a similar condition or experience can help young people with:

  • social and emotional development
  • psychological wellbeing
  • motivation to achieve their goals
  • access to positive role models
  • practical advice for managing their condition
  • understanding they may not get from family and friends
  • social networks and activities that them feel normal
  • avoiding social isolation and withdrawal.

Young people are generally very comfortable using apps and online platforms. For many young people, chatting online feels more natural than face-to-face communication, and online peer support can reduce anxiety about saying the wrong thing or being judged by their appearance.

As young people get better at managing their health condition and navigating the healthcare system, they can also consider becoming a mentor or peer support leader. Studies have shown that peer support leaders are more empowered, have higher self-esteem and are more motivated to manage their own health.15 16 17

Securing a paid peer worker role can also provide long-term employment stability and income, by giving young people access to education and training. This can be particularly empowering for people whose condition limits their employment opportunities.

The following peer support programs may be helpful.

Shared decision making

Introducing young people to shared decision making is an important part of preparing them for the transition to adult healthcare services. It involves the clinician, young person and their families, carers and guardians making health decisions together.

Using shared decision making shows the young person that caring for their health is a partnership, which normalises the process. Over time, young people should become more involved in decisions and you should consider their preferences, making sure they understand the risks and benefits of decisions.

Health coaching

Health coaching can be very effective for young people, helping them:

  • develop and achieve their goals
  • create healthy habits
  • find and maintain motivation
  • identify their strengths and weaknesses
  • develop strategies that draw on strengths and overcome challenges
  • develop personal accountability
  • increase knowledge of their condition
  • access appropriate services
  • increase self-confidence and empowerment.

Formal, unscripted and responsive coaching is often best when the person is young. As their confidence, health literacy and self-management skills improve over time, shorter and scripted coaching sessions or the use of apps may be sufficient.

Brandon’s story

My parents have always been extra protective of me because of my disability. Letting me take more control of my health as I’ve gotten older has been difficult for them. They’re amazing and I love them, but they’ve hovered over me my whole life which has been hard.

Now I’m 18, I’ve moved out with a friend. It’s fantastic and I’m really enjoying my freedom, but it’s harder to look after my condition on my own. I eat more takeaway food now, I’m always forgetting to take my medication and there’s nobody to drive me to appointments if I’m running late and miss the bus.

I know my health is worse than before, but my freedom is really important to me, so I’ve started to work on strategies to improve my diet and time management.

References

  1. Australian Institute of Health and Welfare. Selected chronic diseases among Australia’s children. Bulletin no. 29. AIHW cat. no. AUS 62. Canberra: AIHW; 2005.
  2. NSW Government: Office of the Advocate for Children and Young People.NSW Strategic Plan for Children and Young People. Strawberry Hills, NSW: ACYP; 2016.
  3. North Western Melbourne Primary Health Network. Teach back - a technique for clear communication. 2015.
  4. Muir K, Mullan K, Powell A, et al. State of Australia’s young people: a report on the social, economic, health and family lives of young people. Canberra: Department of Education, Employment and Workplace Relations and the Social Policy Research Centre, University of New South Wales; 2009.
  5. Minors (Property and Contracts) Act 1970 (NSW).
  6. Lin M, Ursula M. Sansom-Daly UM, Wakefield CE, et al. Health literacy in adolescents and young adults: perspectives from Australian cancer survivors. Journal of Adolescent and Young Adult Oncology 2017;6(1):150-58.
  7. ACI, The Sydney Children’s Hospitals Network. Key principles for transitioning young people from paediatric to adult healthcare. Chatswood: ACI; 2014.
  8. Raising Children Network (Australia). Transition plans for adulthood: teenagers with additional needs. Raising Children Network (Australia); 2018.
  9. NSW Health. NSW Youth Health Framework 2017-24 PD2017_019. North Sydney: NSW Health; 2017.
  10. Australian Institute of Health and Welfare. Young Australians: their health and wellbeing 2011. Cat. no. PHE 140. Canberra: AIHW; 2011.
  11. Giedd JN, Keshavan M, Paus T. Why do many psychiatric disorders emerge during adolescence? Nature Reviews Neuroscience 2008;9(12):947
  12. Australian Institute of Health and Welfare. Australian Burden of Disease Study: Impact and causes of illness and death in Australia 2011. Canberra: AIHW 2016.
  13. Department of Health. Adolescent mental health problems, health-related quality of life and health-risk behaviour. Canberra: Department of Health; 2000.
  14. Taylor A, Chittleborough C, Gill T et al. Consensus Statement on Chronic Disease and Psychological Distress. The Assessment of the Determinants and Epidemiology of Psychological Distress (ADEPD) Study. Discipline of Psychiatry, University of Adelaide. January 2009.
  15. Repper J, Carter T. A review of the literature on peer support in mental health services. Journal of Mental Health. 2011;20(4):392-411.
  16. Gillard S, Holley J. Peer workers in mental health services: literature overview. Advances in Psychiatric Treatment 2014;20(4):286-92.
  17. Chronic Illness Alliance. Peer Support for Chronic and Complex Conditions [Literature Review]. Camberwell, Victoria: Chronic Illness Alliance; 2011.

Resources