Supporting adolescents with a life-limiting illness
Adolescence is a time of transition from dependence to relative independence, characterised by rapid physical growth and cognitive and psychological maturation. Life-limiting illness may impact significantly on the ‘work’ of adolescence by its effect on body image, mobility, decision-making, sexuality and peer interactions.
Adolescents can reason and conceptualise abstract ideas, and they express their grief in similar ways to adults. However, notions of omnipotence and immortality during this phase of development can make death hard to accept. Adolescents may become oppositional and impulsive, and engage in risk-taking behaviour. Questions may also focus on spiritual issues.
Adolescents benefit from the support of their parents, yet continue to need contact with and support from their peers, where the challenge is to appear normal. The developmental changes of adolescence continue despite life-limiting illness, and it is important to maximise independence (where possible), autonomy, social contact and daily functioning. The heightened awareness of body image and concerns around physical attractiveness may make physical differences, such as scars and hair loss, particularly devastating for adolescents. For practical tips that may be useful when working with adolescent patients, see Practical suggestions for working with adolescents in palliative care.
Work on building rapport with the patient and finding out what they like to talk about (this can be a prerequisite before they are willing to talk about their symptoms or how they are feeling).
Respect patient confidentiality and inform the adolescent of their right to confidentiality.
Dedicate a portion of the consultation to seeing the adolescent alone.
Respect their need for physical privacy.
Seek the adolescent’s perspectives about their illness and goals of care.
Provide honest responses to questions.
Modify treatment regimens to facilitate mobility and independence whenever possible.
Consider the impact of possible treatment on physical appearance.
Allow options and choices if possible.
Encourage school participation and socialising with peers (eg camps, parties).
Enlist peer support groups if possible (eg CanTeen).
Adolescents often prefer to be cared for at home and this should be accommodated if possible. If they require inpatient care, some adolescents prefer to be in a paediatric hospital or hospice, where they have established relationships with staff, while older or more mature adolescents may prefer to be in an adult hospital or palliative care unit because it better meets their needs.
Adolescents may have been ill since childhood, and the illness may accompany them into adult life. The transition to adult health services is discussed in Care during the transition from adolescence to adulthood.