Conference abstract
Information needs of neuro-oncology patients and their caregivers: a pilot study
Olga Khryshchuk
BACKGROUND: Patients with primary brain tumors (PBT) often have acute depression, anxiety and complications of social adaptation. The goal of this study was to examine difficulties and information needs of patients with PBT and their caregivers during diagnostic and treatment period.
METHODS: Thirteen in-depth interviews were conducted with convenience sample of nine patients and four caregivers who were under treatment in the Kyiv “Feofaniya” clinic in October 2011 – April 2012. Convenience strategy was used because of poor availability of the target group. Data collection was stopped when saturation was achieved.
RESULTS: PBT patients and their caregivers need information about diagnosis and prognosis, while uncertainty about the future is increased due to a long diagnostic period and delayed contacts with neuro-oncology professionals. In making decision, patients rely on the doctors, which confirms the paternalistic relationships. Most patients avoid talking about their feelings with the family and tend to deny the change of roles in the family due to illness. Those who consider chances of recovery as high express need for psychological support, but those who are emotionally suppressed and scared, don’t want to discuss their state with professionals. Caregivers also experience increased responsibility and fear about the future. Possibly, religious patients have lower information needs and willingness to discuss the disease and its treatment with the doctor.
CONCLUSIONS: During the diagnostics patients face problems of uncertainty regarding the diagnosis, the availability of appropriate health professional, and the treatment strategy. Communication with doctor and quality of information provided to the patient is important as well as professional psychological support for patients and their caregivers. Limitations of the study include poor sample strategy, all participants were recruited from a single clinic, which is not the typical for Ukraine, there was no possibility to suggest help when such need was expressed by the respondents.
KEY WORDS: patient, caregiver, primary brain tumors, information needs.
Abstract (pdf) in English and Ukrainian
