Loneliness during protective isolation in patients with haematological malignancies: a three-dimensional conceptual model

Abstract

Background: Patients with haematological malignancies are often nursed in protective isolation for hematopoietic stem cell transplantation, in order to prevent hospital-acquired infections. During protective isolation, patients may experience stress, anxiety, anger, depression, insomnia and loneliness. Loneliness, although a relevant determinant of poor health and quality of life, is under-conceptualized and measured. From a meta-synthesis of qualitative research on the lived experience of patients in protective isolation a conceptual model of loneliness was generated including 3 dimensions: suffering (+), relationship with oneself (-), problems in the relationship with others (+). The purpose of this study is to use these findings to develop a tool able to assess loneliness in haematological isolated patients. Material and methods: Following the European Guidelines of the Statistical System the conceptual model of loneliness, as a consequence of isolation, was used to develop the items for the questionnaire., Two focus-groups were conducted with 10 experts who systematically evaluated the indicators of patients' loneliness with a structured form in order to verify face validity. The experts included nurses, haematologists, psychologists, and a former patient. Results: Items for "suffering" refer to boredom, burden of loneliness, powerlessness, amplification of fears, feeling imprisoned, restriction in movement, distress, suffering orders, lack of privacy, helplessness. Items for "relationship with oneself" refer to being focused on oneself, cognitive reappraisal, attribution of meaning to isolation, inner growth, self-esteem. Items for "problems in the relationship with others" refer to loss of touch and closeness, fear of abandonment, lack of comprehension, lack of someone to talk to, danger in the contact with others, feeling cut off from the world. Conclusions: Patients in protective isolation suffer because of loneliness, lack of freedom and total distress. They need to relate with themselves to cope with being isolated. This happens when patients regulate their emotion and their own attitude to adapt to hospitalization. This adaptation is necessary for fostering hope and implies a search for meaning, associated with what patients perceive as protective. Patients try to remain open to the outside world thanks to the relationships with others, and to maintain reciprocal support.