Nursing care for individuals with Creutzfeldt-Jakob disease from the perspective of a nursing model and nurses: a case study

Abstract

BackgroundCreutzfeldt-Jakob disease (CJD) is a progressive, contagious, and rare fatal neurodegenerative disease of the central nervous system. Its annual worldwide incidence is approximately 1-2 cases per one million, with no known nursing care and medical treatment. Thus, sharing of experiences is important.AimThis study aimed to examine the nursing care for three patients diagnosed with CJD in line with the Model of Living and to discuss nurses' experiences of providing care.Study designThis study used both the retrospective design and case study methods. It included three patients diagnosed with CJD who were hospitalized in the neurology ward of a university hospital in Istanbul between 2018 and 2023 and 11 nurses involved in the care of these patients. Data were collected from health records and through semistructured interviews. The health records of the patients were retrospectively analyzed and the data were systematically analyzed in line with the Model of Living. Data obtained from the face-to-face interviews with the nurses were analyzed using Malterud's systematic text condensation method.ResultsPatient care was handled specifically according to the patients' admission and discharge status, in line with the Model of Living. From the qualitative data obtained in the case study, six main themes and eight subthemes were identified within the scope of the Strengths, Weaknesses, Opportunities and Threats analysis of nursing care experiences. The main themes were professional knowledge and experience, corporate support, lack of knowledge, emotional and physical difficulties, coping with difficulties, professional visibility, individual differences and coping with rare diseases.ConclusionsThe greatest emotional difficulty of nurses was the fear of infecting/transmitting the disease.While caring for patients with CJD, nurses experienced fear of contamination and could not answer the questions of the patient's relatives because of the uncertainty in the prognosis, potentially causing stress in them.Relevance to clinical practiceThis study nurses may guide training modules or structured care recommendations on caring for patients with CJD.Clinical trial numberNot applicable.