Giving voice to those who are living with advanced prostate cancer, family members who give daily assistance and the multidisciplinary team that cares for them has been the primary goal of the study “Living, assisting and caring for the person with carcinoma prostate with metastasis” carried out by the ISTUD Foundation between October 2016 and July 2017 and presented at the XIX AIOM Congress.
100 are the narratives collected through which it was possible to correlate the different points of view of these three protagonists of the care path, analyzing their meanings, expectations, goals, values and revealing those that are the convergence points and those where there isn’t. This listening, analysis and comparison exercise of different perspectives is a powerful tool for gathering organizational information. In fact, narrative research allows you to identify multiple intervention spaces that work on three different levels: care relationship, organization of services, and planning of the paths.
Analyzing the main findings of the study, receiving communication of a cancer diagnosis was a highly traumatic moment with emotional implications relevant to the entire family nucleus, especially in cases where caregivers, mostly wives, had tumor experiences breast or uterus, then indirectly revive the manifestation of disease and therapies. This is the phase, along with the period immediately after prostate surgery, the most emotional moment for both patients and relatives, where the establishment of trust and good care relationship can make a difference.
“Under these conditions, it is not so much to say what you have and what you don’t have but to listen to the patient. Young people are much more mechanical, yes, no, maybe, pim pum pam…. “
It is the need for hope, one of the topics that has emerged more vividly from the stories, especially those who have had a relationship with their own cold carers, unattractive to personal, relational and human aspects, in some cases traumatizing. It is precisely those who have been deprived of the hope that they have used narrative as a cry of complaint and exhortation for clinicians to shift attention from illness to the sick person.
“The patient needs to have relationships with doctors. The healthcare company does what? It takes people who run a protocol… “
How many times are the expectations of carers different from those of the caregivers? Investing in time devoted to dialogue between a doctor, a patient and other healthcare professionals to get to know the mutual point of view can be the cheapest and most efficient way to get better care, align your expectations and help to reduce costs.
One aspect that has emerged strongly from the study is the sexuality one, an area that, from the stories of patients and family members, is not always appropriately addressed in the phase preceding the surgery. Patients point to unclear or inadequate information that, in many cases, has led them to take abusive and sometimes misleading truncated or different sexuality. This topic, which concerns not only patients who have been diagnosed at a young age, is transversal to most people who have participated in the study and, for many of them, is still unresolved in search of solutions.
“On the subject of sexuality I was informed partially at the time of the intervention. I asked that I would suspend this hormonal drug with the hope that I could still live a bit like that. “
The active involvement of patients in decision-making related to managing their own disease results in better outcome and a reduction in medical expenses. Starting from narratives, a protected place where issues sometimes difficult to detect to your carer may arise, to rethink or design the organization of information and training services on the subject of sexuality.
The study has also been made available on all the activities that make people feel good, which allow coping to handle such an imminent situation as oncology. Analyzing the texts is primarily taking care of their grandchildren along with gardening, reading, socializing out of the home to benefit people with cancer. Turning to tomorrow, a size not easy for those with an advanced stage cancer, both patients and family members have expressed the desire to travel or to realize a concrete project.
“In future go to see a game with my son and my nephew”; “I would like to see Paris or the Nordic countries”
These elements, which are often unknown to the team and are considered to be irrelevant to care goals, have a lot of importance for people who are telling and should be an indication to take into account in defining what are the care strategies in a perspective of genuine personalization of the care.
The study, presented at the XIX AIOM congress, as well as providing new real-life data on the experience and care of people living with prostate cancer, has allowed us to reflect on the use of narration as a tool to design concrete organizational interventions and real to all actors in the care process.