Table 5.
Emerging themes and illustrative quotations emerging from the open question
| Themes | Quotations |
|---|---|
Gratitude:
|
“I am grateful for early palliative care [gratitude to EPC model] that is helping me not to suffer and accompanying me, humanly and spiritually, in everything, especially in the awareness of what I am experiencing, step by step.” (002‐P‐030) |
| “I really have to thank the doctors and nurses who take care of me. They are my angels [gratitude to EPC team].” (002‐P‐045) | |
| “Something I'd like to say is thank you (…) to my wife [gratitude to caregivers], who gave me a great support.” (002‐P‐010) | |
| Spreading awareness on EPC | “It is essential to spread the culture of early palliative care [spreading awareness on EPC] that is now denied to most people.” (002‐C‐035) |
| “I wish this model could be taken as an example in other hospitals as well (…) [spreading awareness on EPC]. It is important, because oncology alone is not enough. When I realize that I am sick and I feel pain, every day, with no relief, it is as if I wish I could die. I am more prone to death itself than to life: EPC allows you to understand that it doesn't matter if you live one year or two or three years. You can live with quality. And this is missing. And I would like that even those who don't understand the importance of what has been done in this ambulatory could, eventually, understand it, and they could recognize the importance it deserves, on par with or beyond oncology [spreading awareness on EPC]. Because oncology is everywhere nowadays. I can be cured anywhere. But if it's not combined with this type of cure, it makes no sense. Oncology is pain, without EPC.” (002‐P‐003) | |
| “I want to tell everyone, even those who will come after me, that this unit is our salvation [spreading awareness on EPC].” (002‐P‐011) | |
| Positive thoughts and messages of hope | “I feel I'm lucky, compared with those who suddenly die, because I have had the chance to close, in my remaining time, several pending matters, which I would have continued to neglect if the disease had not hit me [positive thoughts].” (002‐P‐030) “These complementary treatments help me in increasing the hope to live a decent life [messages of hope].” (002‐P‐054) |
At the end of each quotation, the ID of the participant is reported: the first three numbers indicate the unit (001 for the Hematology Unit, Azienda Ospedaliero Universitaria Policlinico, University of Modena and Reggio Emilia Azienda Ospedaliera of Modena and 002 for the Oncology and Palliative Care Unit, Civil Hospital Carpi), the letter indicates patient (P) or caregiver (C), and the last three numbers indicate the recruitment progressive number).
Abbreviation: EPC, early palliative care.