Table 2.

Main themes & subthemes, supported in observations ± interviews

Themes	Sub-themes	Caring activities	Supported in observation	Supported in interviews
Provision of care towards patient self-care and prevention of complications	Family caregivers assistance in activities of daily living	Bathing	✓	✓
		Grooming	✓	✓
		Feeding	✓	✓
		Toileting	✓	✓
		Transfers	✓	✓
		Use of wheelchair	✓	✓
		Socialisation	✓	–
		Help with behaviour management (exercise and diet)	✓	✓
		Help with medical procedures	–	✓
		Promotion in self-care	✓	✓
	Family caregivers assistance towards prevention of complications	Aspiration	–	✓
		Dehydration	–	✓
		Constipation	–	✓
		Moisture lesions	–	✓
		Pressure ulcers	✓	✓
		Ankyloses	–	✓
		Wandering	✓	✓
		Falls	✓	✓
Perceived needs	Knowledge	Prevention of complications	–	✓
		Medicines management	✓	✓
		Management of challenging behaviour	–	✓
		Access to professional support and services	✓	✓
		Understanding process and signs of disease progression and dying	✓	✓
	Practical	Aspiration of secretions	–	✓
		Transfer techniques	✓	✓
		Techniques to prevent pressure ulcers, aspiration and ankyloses	✓	✓
Unknown needs	Prevention of complications	Aspiration, ankyloses, dehydration, constipation and moisture lesions	✓	–
	Knowledge	Disease progression	–	✓
		Signs and symptoms complications	✓	✓
		Medicines and side effects	✓	✓
		Empowerment of patient’s self-care	✓	–
		Access to professional support and services	✓	✓
Family caregivers’ own physical and emotional impairments	Physical	Skeletal muscle health	✓	✓
		Cardiac health	–	✓
	Emotional	Depression	–	✓
		Relationship difficulties	–	✓
Balancing limited time	Caring of other family members	Grand-children, father, brother and husband	–	✓
	Providing income	Raising cattle	–	✓
		Farming	–	✓
	Domestic activities	Preparation of meals	–	✓
		Shopping	–	✓
		Financial management	–	✓
		Washing and ironing clothes	✓	✓
		Cleaning	✓	✓

Legend: subthemes ordered according to the predominance of observations and participant quotes