Decision Making and Future Planning for Children With Complex Illness

Inclusion Criteria

• •Their child must be between 28 days and 18 years old
• •Their child must have a LLI within categories 2-4 (Association for Children with Life-threatening and Terminal Conditions and their Families, 2004) (see page 8)
• •Child must be under the care of a consultant at either of the two NHS Trusts included in the study
• •The parent must be aware of the child's LLI diagnosis
• •Participants must speak English. This is both due to resource constraints and due to the sensitive topic such that difficulties in translating questions sensitively may cause greater distress to participants.
• •Children will be classed as participants if their parent is a participant and consents to their child's medical notes being accessed.
• •For children to participate in the interview component of the study, they must be over the age of 7 years and cognitively able to provide their own assent (or consent, if over 16 years old)
• •Parents must have agreed to the child's participation if they are under 16 years old
• •Participants must speak English or be able to communicate in some way using alternative or augmentative communication.
• •Significant others must have been identified by the eligible child and/or parents as being important in their decision making and future planning
• •Participants must speak English
• •Participants must be over the age of 7 years and provide their own assent alongside parental consent (if under 16 years old) or provide consent if they are over the age of 16 years (in the case of a friend or sibling being nominated as a 'significant other').