Table 3 Common core information needs of carers
Category of need | Examples of information and/or skills required |
|---|---|
A description of palliative care | An explanation of palliative care, what it is, who it is for, what services are available and what to expect when caring for someone with palliative care needs? |
Information on the condition, prognosis and treatment. | Specific information on the illness, recognition of common symptoms and their management. Likely prognosis. Symptoms and how to manage these such as fatigue, nausea, wound care, skin care, general care. |
Medication and pain management | Knowledge of how to assess and manage pain; types of medication; dosage and possible side effects; giving injections / using syringe drivers. |
Personal care/hygiene | General information on bathing, dressing, manual handling, continence/bowel management, fatigue, breathlessness. |
Specialist equipment | The availability and use of specialist equipment such as hoists, oxygen, catheters etc. |
Locally available professional supports | Information on locally available supports such as respite, sitting services, helplines, emergency contacts. |
Emergency supports | Recognising and responding to an emergency, what to do, who to contact. How to communicate with healthcare professionals. |
Nutrition | Dietary advice, feeding techniques, how to prevent dehydration. |
Carer anxiety / confidence | Clarification about caring role and what is expected of you, reassurance around medication provision, frequently asked questions, decision making, communicating with your loved one, support materials (covering social, emotional, spiritual or physical care), emphasis on self-care, socialising when you are a carer, positive aspects of caring. |