Table 3.
Emerging themes and illustrative quotations referred to the present
| Themes | Quotations |
|---|---|
Symptom resolution (first perceived effect):
|
“Now the pain is much better [symptoms resolution].” (002‐P‐039) |
| “Pain immediately eased [symptoms management].” (002‐P‐039) | |
| “This care solved his pain within a few days, and everything improved [symptoms resolution].” (002‐C‐037) | |
| “Palliative team's mantra ‘You must not have pain’ is something that fills my soul [appreciation and endorsement].” (002‐P‐026) | |
| “They solved my problem in two days. Two days [speed].” (002‐P‐004) | |
| “Early palliative care allowed me to have my life back [return to a normal life].” (002‐P‐008) | |
| “It brought me back from death to life [return to a normal life ‐ metaphor].” (002‐P‐017). | |
| “I can enjoy life more, I started doing the things I could no longer do: walking, walking with my dog, seeing people, live [return to a normal life].” (002‐P‐039) | |
| I can enjoy life more, I started doing the things I could no longer do: walking, walking with my dog, seeing people, live [return to a normal life].” (002‐P‐039) | |
| allowing me to resume work, travel, relationships [return to a normal life] (…). I can enjoy life more, I started doing the things I could no longer do: walking, walking with my dog, seeing people, live [return to a normal life].” (002‐P‐039) | |
| “…and I feel now able to live a normal life, with relationships [return to a normal life]. My quality of life has changed.” (002‐P‐035) | |
| “He was more willing to smile, he was more friendly, he had positive thoughts [return to a normal life].” (002‐C‐037) | |
Empowerment (second perceived effect) raising from:
|
“They talk to me, listen to me [active and open listening] and explain things to me, whereas no one explained to me what was happening, during my earlier experience. (002‐P‐050) |
| “Sincerity. Sincerity. Because this is very important, at least it's what I need [sincerity].” (002‐P‐026) | |
| “They did not make me feel either abandoned to myself nor alone with bad thoughts [support], that have been always tightly tied with my pain and suffering.” (002‐P‐047) | |
Empowerment (second perceived effect) that led to:
|
“(…) but they allowed me, through precise and exhaustive explanations, to get a knowledge and the full awareness [awareness] of my symptoms and my state of health, in general.” (002‐P‐030) |
| “Especially, I was able to talk to the EPC physician and confidently decide to stop the chemotherapy [awareness/enhanced problem‐solving skills].” (002‐P‐044) | |
| “Early palliative care allowed me to make the most delicate decisions [enhanced problem‐solving skills]; for example, when I decided to stop cancer therapies, because they were no longer effective [enhanced problem‐solving skills].” (002‐P‐022) | |
| “Especially, I was able to talk to the EPC physician and confidently decide to stop the chemotherapy [awareness/enhanced problem‐solving skills].” (002‐P‐044) | |
| “I know I have a terminal disease, but now I feel more peaceful [improved coping].” (002‐P‐040). | |
| “Now, with no pain, I am less worried. I feel stronger because I think I will be able to face what life has in store for me [improved coping].” (002‐P‐046) | |
|
Components of EPC:
|
“I am happy with the EPC unit, they are very professional, very competent in everything: psychological aspects, more practical issues, everything [holistic/multidisciplinary approach].” (002‐P‐013) |
| “It is not only the drug therapy, but the attempt in supporting me and my needs in any possible ways [holistic/multidisciplinary approach].” (002‐P‐002) | |
| “It is not only the intravenous infusions that helped me [holistic/multidisciplinary approach.” (002‐P‐008) | |
| “What pushed me toward this cure is that they talk to my healthy part [person‐centered].” (002‐P‐026) | |
| “I fully trust doctors at the EPC unit, because they know how to talk to the healthy part of myself [person‐centered].” (002‐P‐043) | |
| They talk to me, they listen to me, and they explain everything to me [person‐centered], whereas, no one explained to me what was happening, during my earlier experience.” (002‐P‐050) | |
| Above all, I feel peaceful, because I know that there are people who take care of me and will not abandon me [person‐centered].” (002‐P‐045) | |
| “The luck is that a beautiful, almost familiar environment has been created [environment].” (002‐P‐004) | |
| “I love the doctor and the nurse, because they make me feel at home [environment]. (002‐P‐050) | |
| “By thinking that I always see the kind and smiling faces welcoming me [environment], when I go to the EPC unit, means a lot. (002‐P‐045) | |
| “…but it was also the environment that made me feel good [environment].” (002‐P‐008) | |
| “I expected a sense of unavoidability inside [the EPC clinic], but after a few visits, I was very surprised by the spontaneity with which the patients talked about their problems. They also began to consider them with greater detachment and even with a certain form of lightness [environment created by other patients]!” (001‐C‐010) | |
| “Here you gain back all the desire to live, because we prepare dinners together, we laugh together, we together overcome the difficulties we face [environment created by other patients], because if, today, I feel sad, all of them take care of me, for example by phone calls. It's definitively amazing. It's a sort of a new community, someone call it sangha [environment created by other patients].” (002‐P‐003) | |
| Caregivers more focused on the end of life | “Early palliative care is the only way to accompany the patient and his family in a relation of truth and awareness, helping to approach the idea of death and death itself, without anguish and denial; my wife was released from pain and I had the chance to prepare myself to say goodbye to my beloved, to say and to do the things, I considered and felt were important to say and to do with her [caregivers more focused on the end of life].” (002‐C‐035) |
| “The way allows you to come to the end of life with serenity and dignity [caregivers more focused on the end of life].” (002‐C‐033) | |
Need of EPC:
|
“I would call this care, the care for life [need of EPC].” (002‐P‐035) |
| “A person, beyond the physical problems that the disease entails, enters a tunnel of fear and insecurity. In this sense, I believe that the early palliative care is fundamental, on various levels [need of EPC].” (002‐C‐001) | |
| “Early palliative care is fundamental as a complement to standard therapy [need of EPC with standard care].” (001‐C‐012) | |
| “Without detracting from the undisputed validity of everything that is important and that I have done, early palliative care is undoubtedly a lifesaver [need of EPC with standard care].” (002‐P‐014) | |
| “Chemotherapy and cancer therapy are good, but without this part of care, in my opinion, they are not useful. This part of care has an incredible relevance [need of EPC with standard care].” (002‐P‐002) | |
| “While chemotherapy helped, serious problems came out, but the early palliative care immediately allowed my husband to feel better, without pain, and to help him to lead a normal and peaceful life. The more time goes by and the more I understand that they are necessary [need of EPC with standard care].” (002‐C‐037) | |
| “I am convinced that the patient under oncological treatment, who has the opportunity to have concomitant palliative care, may experience a sort of oncological treatment at its maximal effectiveness [need of EPC with standard care].” (002‐P‐030) | |
| “I often say that oncology, radiotherapy… they are all important for this disease, but without ePSC they are meaningless [need of EPC with standard care], because if I'm sick and the oncologist gives me chemotherapy, I'm even worse, and I can't see the immediate benefit.” (002‐P‐003) | |
| “(…) an alternative to relentless treatments [need of EPC without standard care]” (002‐C‐021) | |
| “To me early palliative care is fundamental (…). Now, I am no longer undergoing cancer treatments because they made me feel bad [need of EPC without standard care]. Now I'm quiet.” (002‐P‐050) | |
| “Early palliative cares were a salvation, a light. (…) Above all, I was able to talk to the doctor and, calmly, decide to suspend the chemotherapy. While taking such a decision, being aware and confident that such a team will keep taking care of my clinical problems and of myself, as a person, was, truly, a salvation [need of EPC without standard care].” (002‐P‐044) |
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.