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 | ✓ | ✓ |