Abstract
M.A.
Primary malignant brain tumours (PMBTs) are devastating diagnoses that result in the
swift deterioration of neurological functioning. The life expectancy of the patient
from the time of diagnosis is between three and 12 months. This illness trajectory is
characterised by loss of functional abilities such as walking, talking and writing;
increasing cognitive impairments such as loss of executive functioning, speech
difficulties and problems with comprehension; and the presence of neuropsychiatric
symptoms such as depression, anxiety, apathy and aggression. Since treatment is
primarily palliative rather than curative, family members and specifically spouses are
required to care for PMBT patients in the home setting. The daily challenges of caring
for a spouse with a PMBT have a significant impact on the emotional functioning of
the caregiver.
Although other studies have examined the experiences of various family members of
PMBT patients, this research is the first phenomenological study, which investigates
the emotional experiences in particular, with a focus on female spouses of PMBT
patients. Other studies have also failed to describe the experience of caregivers
throughout the entire course of the illness trajectory, that is, from pre-diagnostic
symptoms, until the time of death.
Therefore, this study attempts to enter the life-world of female spouses of PMBT
patients in order to describe their emotional experiences from the time that prediagnostic
symptoms manifested, throughout the disease trajectory, and until the
death of the patient. A descriptive phenomenological method of enquiry was chosen
to achieve this end. Three female spouses of PMBT patients were sourced and
interviewed for the purposes of this study. Their husbands had passed away from a
PMBT approximately three years prior. Open-ended interviews were conducted in
order to elicit their emotional experiences during their husbands’ illness trajectory.
The interviews were transcribed verbatim with the inclusion of non-verbal cues where
relevant. This data was then analysed using a sequential phenomenological approach.
Common themes were integrated to form the essential structure of a female spouse’s
emotional experience of her husband’s PMBT illness. These themes were also
discussed in conjunction with the literature review to support their validity. The
themes that emerged fell within four distinct time periods. The period before
diagnosis, at diagnosis, during the course of the illness and at the time of death.
Themes that emerged during the research interview were found to be pertinent and
were also discussed.