The major themes identified shed much light on the experiences of caregivers and patients, and their attitudes are quite informative in the context of a terminal illness affecting the brain.
Losing a loved one brings on grief and other complex feelings, but caregivers of people with terminal diseases may experience similar emotions well before the person passes away.
Candy et al. [ 16] included 11 randomized controlled trials with 1,836 caregivers of terminal stage patients who received support interventions for the caring of the dependent person, emotional support, and/or tools to deal with it.
Caregivers are excluded if the caregiver or dementia patient: (1) has a terminal illness with life expectancy less than 6-months; (2) is in active treatment for cancer; or (3) had greater than 3 acute medical hospitalizations in the past year; or (4) is currently involved in another clinical trial of psychosocial or educational support.
Driven by this research interest, Laura developed her final thesis in Interaction Design at CIID around palliative care and terminal illness, co-designing an alternative and symbolic patient journey with the staff, patients and caregivers of an hospice in Rome, Italy.
We discovered that the patients and caregivers interviewed often felt it necessary, particularly when faced with a terminal disease of the brain, to emphasize the importance of mental functioning, orientation and cognition in their definitions of quality of life.
The sub-process of " coming to terms" with their situation has also been described in a study of persons with advanced disease and their family caregivers as a way of negotiating and coping with a terminal prognosis [ 22].
The meaning and processes of hope have been studied across a variety of health and illness experiences, including individuals living with a terminal illness [ 23, 24], caregivers of persons living with chronic illness [ 3], caregivers of persons living with dementia [ 25, 26], bereaved caregivers [ 27] and individuals living with HIV/AIDS [ 28].
Two weeks later, my father received a terminal diagnosis; hospice caregivers were now on duty around the clock.
Instead of building a new terminal, Oakland is doing a $200 million facelift of an existing terminal.
