2 T He D Evelopment of a M Odel of D Ignity in I Llness B Ased on Q Ualitative I Nterviews with S Eriously

Background While knowledge on factors affecting personal dignity of patients nearing death is quite substantial, far less is known about how patients living with a serious disease understand dignity. Objective To develop a conceptual model of dignity that illuminates the process by which serious illness can undermine patients’ dignity, and that is applicable to a wide patient population. Design Qualitative interview study. Participants 34 Patients with either cancer, early stage dementia, or a severe chronic illness were selected from an extensive cohort study into advance directives. Method Indepth interviews were carried out exploring the experiences of seriously ill patients with regard to their personal dignity. The interview transcripts were analyzed using thematic analysis and a conceptual model was constructed based on the resulting themes. Results We developed a two-step dignity model of illness. According to this model, illness related conditions do not affect patients’ dignity directly but indirectly by affecting the way patients perceive themselves. We identified three components shaping self-perception: (a) the individual self: the subjective experiences and internally held qualities of the patient; (b) the relational self: the self within reciprocal interaction with others; and, (c) the societal self: the self as a social object in the eyes of others. Conclusions The merits of the model are two-folded. First, it offers an organizing framework for further research into patients’ dignity. Secondly, the model can serve to facilitate care for seriously ill patients in practice by providing insight into illness and dignity at the level of the individual patient where intervention can be effectively targeted. Published as: Isis E. van Gennip, H. Roeline W. Pasman, Mariska G. Oosterveld-Vlug, Dick L. Willems, Bregje D. Onwuteaka-Philipsen. (2013). The development of a model of dignity in illness based on qualitative interviews with seriously ill patients. International Journal of Nursing Studies, 50, 1080-1089.