ELPIDA Course - English

Problems with communication are often given as a significant reason why palliative care provision for people with ID is more difficult. Communication problems affect a range of issues pertinent to optimal palliative care provision, including assessment of pain and other symptoms, emotional support, truth disclosure, or consent to care and treatment (1:36-39).

The following are important in ensuring good communication: 

• Recognising the fact that many people with ID need more time to understand information, cannot manage too much information at once and need repetition of information 
• Supplementing verbal and written information with clear words and pictures to promote understanding 
• Tailoring communication styles to the specific needs of the person 
• Helping people with ID to understand their situation as much as they want to, in a way that is suited to their communication needs

Amanda Cresswell, who has ID, talks about what it was like for her when her mum died of a brain tumour, and when she herself was diagnosed with cancer (4):

ACTIVITIES:

• Have you talked to your child/sibling/client about the end of life?
• What do you think is the most important to talk about? Why?
• What do you think is the best way of preparing your child/ sibling/client for someone they love to die?
• Make a plan for how you want to talk with your child/sibling/client about life ending and death.