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Table 3 Framework for consumer portal

From: Developing a web-based information resource for palliative care: an action-research inspired approach

Categories Content To Cover
About Palliative Care What is palliative care? Terminal illness Precious time Maximising opportunities in life FAQ
  Who provides palliative care? Health care team Eg. pastoral care, family as the key unit provider
  How do you access palliative care? Self referral GP Hospital physician Community services Specialist PC services
  When does palliative care begin? When required
  When can I ask about pain relief and symptom control? When do you discuss palliative care and supportive issues?
Navigating the Health Care System Palliative care and the health care system Feeling abandoned? Move from the acute serviced orientation Home or Hospital ?
  Talking to your doctor Hints and strategies
  Talking with other health care professionals Hints and strategies
  Complementary therapies Types Benefits autions
  Unhappy with the health care system? Patient rights Avenues for mediation
Receiving palliative care Planning for the time you have What we know about dealing with a life limiting diagnosis
  Managing your symptoms Fatigue Frustration Pain Difficulty breathing
  Managing your life Living with uncertainty Have your affairs in order
  What to expect when you are dying Fears, pain, reaction and behaviours of others
  Creating your memory Healing old wounds Leaving a message Giving treasures to be treasured
  What others have done Stories & Obituaries
Caring for someone receiving palliative care Being a caregiver The role/Rights/Support Resources
  Understanding your situation Physical and psychological demands Personal loss & growth Dealing with different coping strategies Need for a break
  Creating memories Events/Diary/Photos The stories of other caregivers
  Obtain important information Deciding what is important
  Physical aspects of caring Bed comfort/Nutrition Medications/Hygiene
  Recognising and managing symptoms Fatigue/Pain Lack of appetite or urinary control
Caring for someone who is receiving palliative care cont'd When death occurs What to expect when the one you are caring for is dying Letting go What to do when someone dies Caring for the body after death