Table 2

Informational needs for the patient and caregiver

ThemePatient needCaregiver need
Disease-specific content
  • naming the diagnosis

  • typical symptoms

  • typical prognosis

  • therapeutic options

  • effects of medications

  • research being conducted

  • basic pathophysiology

  • symptoms to look out for

  • mental effects on the patient

  • available therapies

Individualised content
  • what to do to improve/maintain quality of life

  • what not to do (things detrimental to their quality of life)

  • planning for trips away from home

  • acquiring supplemental oxygen and insurance coverage

  • success stories of patients who have surpassed prognostic timelines

  • how to manage medications

  • managing supplemental oxygen (how to get it, how it should be used, how to encourage appropriate use)

  • when to be concerned about patient symptoms, disease progression

  • managing patients’ and their own expectations

  • preventing exposure to infection

  • how to decrease stress and tension between themselves and patient