Twenty studies were included in the review (1,456 caregivers in total). There were 13 quantitative (cross-sectional/descriptive studies) and seven qualitative studies.
Caregiver psychological distress (seven quantitative studies): The evidence was mixed, and no firm conclusions could be drawn on the impact of caregiving on psychological outcomes.
Burden of care (four qualitative studies): There were reports of caregiver burden in respect of the multiple roles that caregivers had to adopt, and in particular the difficulty of having to be on alert though the night. One study reported caregiving as a positive experience.
Perceived adequacy of professional support (two quantitative studies, five qualitative studies): Lack of information on the disease trajectory and symptom management was reported as a concern in two qualitative and one quantitative study. Knowledge of, and access to, support services was considered to be a problem (three qualitative studies, one quantitative study). Reluctance to access services was reported in two qualitative studies and one quantitative study. Care support by a specialist nurse was considered to be a positive factor (one qualitative study).