• J Palliat Med · Jan 2014

    Hidden patients: the relatives of patients in need of palliative care.

    • Gergana Foreva and Radost Assenova.
    • General Practice Section, Medical University Plovdiv , Plovdiv, Bulgaria .
    • J Palliat Med. 2014 Jan 1;17(1):56-61.

    BackgroundWhen identifying patients for palliative care, medical specialists find it necessary to disclose "hidden" patients: the patient's relatives. The issue has been discussed sporadically in Bulgaria; the present study was part of a larger investigation that examined the opinion of medical specialists, patients, and their relatives.MethodThe study protocol was explained to participants who gave written informed consent. Patients (n=211) were followed up on by their general practitioners (GPs) (n=42) during one year. All relatives were invited, and 173 (82%) agreed and participated. A questionnaire created by the authors was used. The data were analyzed by frequency distribution (descriptive statistics) and nonparametric tests (Pearson's χ(2)) and statistically processed using SPSS 17.0 (SPSS Inc., Chicago, IL).ResultsRelatives providing care were predominantly women, two-thirds over 60 years of age. There was a one-to-one ratio between caregivers for oncological and nononcological patients. The duration of care was more than one year in 53% of cases. Most relatives reported their loved ones found physical suffering "very hard to bear" (53%), while approximately 17% could not assess the extent of psychological suffering. The vast majority stated that they had difficulties in providing care, and 68% had financial problems in that respect.ConclusionIncluding relatives as users and part of the palliative care team has been discussed in the literature. In Bulgaria, participation is solely due to the lack of organized services for palliative care. Relatives participate in activities that are performed by trained staff in countries with developed palliative care; these activities, along with negative emotional experiences and economic difficulties, overburden these caregiving relatives significantly.

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