| Identity and Role Change |
Qualitative 21 Quantitative 7 |
ICs quickly become enmeshed with the patient and lose a sense of their own identity. The patient's ongoing loss of cognitive function and unique personality leads to dominance of the IC's role and loss of reciprocity in the relationship. This, too, impacts ICs' sense of identity.
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| Isolation |
Qualitative 10 Quantitative 2 |
ICs become rapidly isolated as patients' cognitive and personality changes lead to a deterioration in the IC-patient relationship. Isolation increases over time. Isolation and loneliness are exacerbated when medical professionals avoid discussing how the disease impacts the family and the IC-patient relationship.
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| Responsibility and Guilt |
Qualitative 18 Quantitative 6 |
Responsibilities of ICs of brain tumor patients are greater than those of other cancer patient ICs due to patients' significant limitations. Paradoxical experience of complete responsibility for patient yet feeling complete powerlessness. ICs experience guilt when they acknowledge their own limitations and needs; as a result, their self-care appears to be extraordinarily poor.
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| Death |
Qualitative 16 Quantitative 3 |
Death anxiety is experienced as “existential crisis” for ICs. Loss of personality and cognitive capacity are experienced as ongoing and repeated “mini-deaths.” Medical professionals are generally avoidant of EOL discussions, while ICs desire information to manage expectations.
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| Growth, Meaning and Purpose |
Qualitative 17 Quantitative 7 |
ICs experience feelings of increased closeness, love, and admiration for the patient. Providing care allows ICs to derive meaning, purpose, and personal growth from their experience. Providing care is seen as an opportunity to reframe priorities and values, and to find inner strength and courage.
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| Spirituality and Religion |
Qualitative 12 Quantitative 7 |
Spirituality and religion facilitate coping and meaning-making and are sources of comfort, hope, optimism and strength. Attention to spiritual and religious beliefs are identified as a critical unmet need among ICs. Spirituality and religion are often evoked when asking, “Why did this happen?”
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