Table 2.

Inter-related domains and themes—symptoms, concerns, and care priorities (n = 106)

Themes	Pursuing normality	Physical	Spiritual/existential	Emotional/psychological	Social	Practical
Subthemes	Not knowing any different	Pain	Life unlived	Awareness of difference	Loneliness and isolation	Minimising hospital stays—preventing unplanned admissions, timely discharge
	Regaining normality	Other symptoms, e.g., seizures, infection, breathing difficulties, nausea, and vomiting	Religious beliefs and needs	Need to meet others the same	Access to social support	Service provision and availability, e.g., 24/7 care at home, access to respite, care continuity and co-ordination, and facilities
	Adjusting to a new normal	Management of symptoms	Hopes for and uncertainty about the future	Control and independence,	Communication and decision making (including building trust and respect, managing discord, managing goals, and expectations)	Burden and logistics of care
		Medical interventions, e.g., minor procedures, surgery, feeding tube insertion, and blood tests	Living a full life	Protecting family members	Balancing needs of family	Information needs
		Eating and drinking	Determination to overcome condition	Emotions, e.g., worry and anger sadness	Employment, housing, and financial concerns	Changing needs
		Sleep, fatigue, and tiredness	Meaning of life	Memory making and wishes	Access to technology and social media	Advance care planning
		Changes in physical appearance		Loss of self-confidence	Enjoying usual childhood activities, e.g., hobbies, play, school, and friendships	Transitions (care settings, change of school, child and adult services)
				Impact on family life	Restrictions on day-to-day life	Access to equipment
				Psychological and emotional support
				Memory making and wishes
				Privacy and dignity