Deciphering Unwritten Rules Patients, relatives and nurses in palliative cancer care

Sammanfattning: This thesis focuses on palliative cancer care in acute care hospitals and home care settings. The overall aim was to generate a grounded theory explaining the latent patterns of behavior of patients, relatives and nurses. The thesis includes one population-based study with cross-sectional design and four classic grounded theory studies.Study I was conducted in two acute care hospitals. In this 5-year follow-up study, the proportion of hospitalized palliative cancer patients had decreased. The patients were older with more symptoms and care needs per patient. In both years, the most common symptoms were pain and deterioration and the most common cancer sites were prostate and colorectal. The results showed that associations between symptoms, care needs and cancer site were mostly weak.In study II, striving for emotional survival emerged as the pattern of behavior through which nurses in acute care hospitals deal with their main concern, the risk of being emotionally overloaded. Striving for emotional survival involves emotional shielding, emotional processing and emotional postponing. In study III, doing good care emerged as the pattern of behavior through which nurses in home care deal with their main concern, their desire to give good care. Doing good care involves three different caring behaviors: anticipatory caring, momentary caring and stagnated caring.     In study IV, living on hold emerged as the pattern of behavior through which patients and relatives deal with their main concern, being put on hold. Living on hold involves three modes: fighting, adjusting and surrendering.The overall theory, deciphering unwritten rules, explains how patients, relatives and nurses are dealing with the uncertainty of how to act and behave.   Deciphering unwritten rules involves figuring out, deliberating, maneuvering and evaluating.In conclusion, this thesis demonstrates the complexities of palliative cancer care and the importance of knowledge, resources and counseling. Patients should be cared for at the right care level according to their care needs and the care focus should be on treating symptoms irrespective of the diagnosis. The palliative care approach therefore needs to be implemented in all caring contexts with dying people.