When I started my dialysis’ treatments, I never thought about how important would be the role of a social worker in my life. Thanks to the support I had, I understood that my life didn’t need to be limited, and I found out I even could travel.
To be able to achieve my personal and family goals gave me another perspective. That even encourage me to be a little bit bold, because I pushed myself on a journey around the world with my family, something that now is naturally not possible.
The social worker at my clinic organized everything. On the other hand, the social workers who I came across always helped me clarify my doubts and some themes related to practical aspects such as, the social rights and benefits that assist us, as well as more complex ones like the family environment support.
Because I always felt supported and guided by my social workers, I decided to ask some questions so you may know what their work is all about. Dra Marta Olim has invited me several times for live streamings at Diaverum covering various subjects. Today was me who challenge her to share her knowledge with us.
Filipe – What is the importance and the function of a social worker in the life of a CKD patient?
Marta Olim – The social worker is someone who focus absolutely on the human being, in his potential and, with a comprehensive and mutual commitment relationship, tries to help somebody who’s in a fragile living condition.
At the Diaverum clinics, a social worker is part of the interdisciplinary team of care services. Has as a mission to support each patient with kidney failure, who is going through hemodialysis treatment and his family by leading them to integrate the disease, and the treatment, in the most positive way. The social worker helps them deal with the modifications provoked by the new life condition, promoting the physical, psychic and emotional integrity.
Filipe – Given your experience, which are the main aspects of the disease that demand a psychosocial assistance?
Marta Olim – It is an unpredictable disease and also a little intermittent, in the sense that suddenly a person is confronted with an unpredicted intercurrence which can disorganize the person’s life, causing some psycho-emotional instability. Given those circumstances, a person might think that could be hard to program, and perform projects, and that can lead to some insecurity in managing the daily life.
This feeling of little control on your day-to-day might easily origin humour changes, stress, and ambivalence in what you want to feel or live.
All of this can take more challenging outlines to the person who’s living this type of situation, even because other problems may occur and enhance the difficulties that a person has in adjusting to the disease/treatment, which in turn, can cause problems in the adaptation of the new reality.
At this time, the person needs to benefit from a follow-up provided by a social worker who is going to put the disease “where it belongs”, and help that patient assuming a better position in this new life condition.
The social worker is also going to support in the decision making, which needs to be conscious and informed, and will activate the resources, and social responses that will better adjust to that person’s needs.
Filipe – How does the relation between social worker-patient grows throughout treatments?
Marta Olim – I think that you establish a relationship of commitment and mutual understanding, where both parts engage in a social changing process.
As in any path you do with someone, you go through different phases, while the main goal is never to lose the confidence in the process, despite the progress and withdrawals.
Filipe – Which are the kidney failure patient’s main concerns?
Marta Olim – The disease interrupts the projects of the patient’s life. One of the concerns is the management of their expectations and the expectations of others.
Will I be able to work? Will I overcome the treatments without losing autonomy/functionality? Will I be able to follow my family in their projects? Will I be able to go out on vacations?
There’s a world of questions, doubts, and uncertainties that concern these people.
The disease’s unpredictability reinforces those doubts about what might be each one’s future.
They also face fear, a persistent fear of aggravating their condition of becoming more dependent or even dying.
Filipe – How can a social worker contribute to change the patient life’s perspective?
Marta Olim – Each person will have their adjustment and overcoming strategies regarding the way they manage their life.
There is a principle where we must stand: the person is not the disease! The person is the main responsible in the way how it will experience treatment.
CKD patients must understand, and feel that they is much more than the disease and ask themselves where they want to put the illness in their lives, and how much space does it deserves.
Those reflections are fundamental to redefine their life’s project.
The social worker is someone close to the person who’s getting treatment, reinforcing continuously, their skills and potential in a manner that the patient handles this new life condition in the most positive way. The social worker helps rediscover inner resources, encourages and guides the patient when taking responsible and informed decisions to live a fulfilling life.
Some occasions, we complement this work with external resources, with community articulations, where we engage external resources with the goal of minimizing the disease’s impact and improve the personal life’s condition.
Filipe – The patients need their freedom to do their plans, travelling, for example, but some times they face a super protective family. Which is your advice for the patient’s relatives to change that mindset?
Marta Olim – That is also a difficult moment for the family.
It is a moment of crisis and a test for the relatives. I usually say, the kidney hurts on everyone.
According to the disease’s evolution and prognosis, the family is going to need to readjust to this new condition of a very demanding life, which, inevitably will shake the structure and will give new meanings and representations.
A lot of families assume a super protector behavior, which may call into question the patient’s autonomy. Others might feel more guilty, or some ambiguity in care (I’m doing everything right?), and difficulty while delegating the continuity of care.
As social workers, we also interfere and follow up the families, because they have different needs from the patients. In this intervention, we have to deliver the security and the needed support that the families deserve, and help them overcame their challenges. There is no better or worst advice, but a deep work with the families to respond to their real necessities.
About Marta Olim
Marta Olim is a Social Worker since 2002. Her path begins at Santa Cruz Hospital in the Nephrology and Internal Medicine Service. Also worked in the Surgery and Pediatric Cardiology services, at the same Hospita as well as at Centro Hospitalar Lisboa Ocidental (CHLO) Urgency.
Master in Social Service, Marta Olim specialized in Family and Couple Therapy, with thesis about kidney disease, more specifically, the disease’s impact on Self and Family. Today works as Social Work Department Manager and Head of Social Responsibility and Communications at Diaverum Portugal.