Principle 3 - Empower, encourage and enable young people to self-manage

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Teaching a young person to self-manage requires a process that is carefully planned, adolescent friendly and developmentally appropriate.

Increase responsibility for decision making gradually. Discuss the transition process and provide formal documentation covering details of:

  • clinical care
  • their transition assessment and goals.

Be sure to involve their carer if the young person has complex needs or will be unable to manage their care independently.

Assess the young person’s needs

Consider using HEEADSSS assessment to enable holistic person-centred care. The HEEADSSS assessment is a screening tool for conducting a comprehensive psychosocial history and health-risk assessment with a young person.

Enabling young people to self manage

Person-centred care

  • Assess capacity for healthcare decision making
  • Assess baseline health knowledge
  • Self-management needs identified, supported and coached
  • Use of assessment tools, like HEEADSSS
  • Specific condition-related transition groups
  • Individual plan developed for education
  • Knowing who to contact when things aren’t going to plan

To keep it current

  • Regular follow up, monitoring and evaluation
  • Ongoing assessment when required
  • Review when change occurs

Empower the young person

Encourage the young person and carers to increase their health literacy, education and self-management skills.

  • Explore the health condition or service specific information that is available for the young person.
  • Youth Action NSW has a health literacy site, Ask for Health. This web-based resource is created by health professionals and young people for young people.
  • Do you encourage young people to develop their self-management skills? The transition readiness checklist is available to assist these discussions.

You need to show young people how we can do all this by ourselves. Jayden M, 19, who lives with a chronic condition*

Where it may not be possible to develop these skills with the young person, ensure their carer is involved in planning and information sharing. Ensuring that carers have the support and tools they need during transition is important. There are fact sheets for carers in the resources section.

Measures

System and service measures

  • Health coaching programs and self-management tools are available to encourage independence.
  • Condition-specific education transition groups are available.
  • Tools like HEEADSS and transition readiness checklist are used.

Patient and consumer measures

  • Pre- and post-health education surveys on knowledge, confidence and readiness are conducted.
  • Relevant clinical outcome measures are recorded.
  • Clinic or appointment attendance are recorded.
  • Patient-reported measures are collected.

Resources

In addition, each local health district has:

From the Chronic Illness Peer Support (ChIPS) "Become a more confident public speaker" workshop.

References

  • Binks JA, Barden WS, Burke TA, et al. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil. 2007 Aug;88(8):1064-73. DOI: 10.1016/j.apmr.2007.04.018
  • Bomba F, Herrmann-Garitz C, Schmidt J, et al. An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme. Health Soc Care Community. 2017;25(2):652-66. DOI: 10.1111/hsc.12356
  • Clarizia NA, Chahal N, Manlhiot C, et al. Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can J Cardiol. 2009 Sep;25(9):e317-22. DOI: 10.1016/s0828-282x(09)70145-x
  • Lugasi T, Achille M, Stevenson M. Patients' perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health. 2011 May;48(5):429-40. DOI: 10.1016/j.jadohealth.2010.10.016
  • O'Sullivan-Oliveira J, Fernandes SM, Borges LF, et al. Transition of pediatric patients to adult care: an analysis of provider perceptions across discipline and role. Pediatr Nurs. 2014 May-Jun;40(3):113-20, 42.
  • Pinzon J, Harvey J, Society CP, et al. Care of adolescents with chronic conditions. Paediatr Child Health. 2006;11(1):43-8. DOI: 10.1093/pch/11.1.43
  • Suris JC, Akre C. Key elements for, and indicators of, a successful transition: an international Delphi study. J Adolesc Health. 2015 Jun;56(6):612-8. DOI: 10.1016/j.jadohealth.2015.02.007
  • Viner R. Barriers and good practice in transition from paediatric to adult care. J R Soc Med. 2001;94 Suppl 40(Suppl 40):2-4.
  • Whitfield EP, Fredericks EM, Eder SJ, et al. Transition readiness in pediatric patients with inflammatory bowel disease: patient survey of self-management skills. J Pediatr Gastroenterol Nutr. 2015;60(1):36-41. DOI: 10.1097/mpg.0000000000000555

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