Honest conversation is a universal tool that is key to understanding each other and receiving support from the other person that is appropriate to our needs. However, it turns out that we do not always find it easy to use this skill. Open communication is a particular challenge for carers of chronically ill people. Breaking down these barriers is encouraged by people who know them from their own experience. One of them is singer Natalia Kukulska, who for years cared for her sick grandmother. The results of a recent survey carried out as part of the Nutricia Foundation's education campaign showed what carers and their loved ones perceive as the biggest barriers to effective communication, supporting the carer and why they find talking difficult.
"I can't run out of strength".
Survey results[1] conducted as part of the campaign 'Medical Nutrition - Your Meals in the Fight Against Illness' shows that almost half of the carers happened to decline the care assistance offered. The most common reason cited by 31% respondents was a reluctance to be seen as weak.
- My beloved grandmother became very seriously ill in the last years of her life. At some point, really, my whole life was tailored to her needs. I acted bit by bit as housekeeper, nanny, psychologist, hospital orderly and dietician. At times, I was tired beyond my strength, which sometimes made me impatient. It was difficult for me to admit it, to talk about how I was feeling and to get support from others. I wanted to do everything myself. I felt that I owed it to my grandmother, that I had to be 100 per cent there for her, I couldn't run out of strength - confesses singer Natalia Kukulska.
She also admits that opening up to talk and being able to express her emotions and needs would make it easier for her and her loved ones to get through these moments. - Today, richer by this difficult experience, I know how important it is to open up to the help of others. Dialogue, conversation, listening to each other's needs - this is something we can do every day, every moment.
Communication in illness - let's not do it on the run
So why is conversation something that many people find difficult, fearful, unable to open up or avoid? The survey shows that the biggest obstacles to communication between carers and their loved ones are: tiredness of the situation (declared by 48% respondents) and lack of understanding on their part (indicated by 40% respondents). - It is a paradoxical situation. In conversation, we are afraid of being misunderstood, and only she - mature, authentic - is able to help avoid it. Discussing a problematic situation and needs can only be beneficial, even if the conversation itself is not always pleasant. Most interestingly, the stakeholders themselves know this. According to the 62% carers surveyed, carving out more time for conversation can improve this communication and its effectiveness. The value of conversation is therefore known, but we still find it hard to mobilise for it - says Adrianna Sobol, a psycho-oncologist from the Medical University of Warsaw.
It also highlights the importance of ensuring freedom and trust during difficult conversations. In fact, the survey results showed that as many as a quarter of carers confessed to feeling uncomfortable during these conversations. The expert advises to prepare properly for the conversation. In her opinion, a common mistake is to take on such a demanding task suddenly, on the run, while doing other things, sometimes one of the parties is surprised that the topic is being broached. An important conversation should be arranged some time in advance, with a special time set aside so that everyone has a chance to think about their needs, possibilities and emotions in peace.
Let's talk about everything
Honorata Kołodziejczyk, a nurse caring for enteral nutrition patients at home, points out that the conversation should cover a variety of topics. The exchange of experiences, ideas and solutions heard can always benefit the life of the patient and their carer. Examples include ensuring that the patient receives adequate nutrition. This is a demanding and time-consuming task. One in three people surveyed (34%) prepares meals for the sick person on a daily basis. Sometimes, however, despite the great efforts of the carer, the home menu is not able to cover all the nutritional requirements of the illness or the person simply cannot eat enough. Here again, it is worthwhile to talk to both the sick person and the doctor about what causes these problems and how they can be dealt with.
One possible solution is the use of medical nutrition. Caregivers whose clients benefited from nutritional supplements observed a positive impact of such support on the condition of the patient - their clients reported feeling less tired (45%) and the weight gain or maintenance that is so important, especially in oncological diseases (44%). 44% carers also noted an improved sense of wellbeing in the patient. - In my work I visit the homes of people who are on enteral nutrition, so talking to patients and carers is a daily occurrence for me. Many families initially shy away from implementing such nutritional support. However, over time, they themselves admit that if they could turn back time, they would have decided much sooner. We are often afraid of what is new and unknown, and as the study shows, even 21% carers were not aware of the existence of medical nutrition at all. It is therefore worth asking around, looking for reliable information, stories of others in a similar situation. Younger, internet savvy people who know where to look for reliable knowledge (e.g. in the media of educational or patient organisations) can be involved. From a simple conversation about an article you have read, you can arrive at solutions that improve the comfort of both the patient and the carer - explains the nurse.
Information on medical nutrition and advice for carers can be found on www.zywieniemedyczne.pl and on its profile Nutricia Foundation on Facebook.
The campaign is organised by the Nutricia Foundation. One of the Campaign's Partners is the Institute for Patients' Rights and Health Education.
[1] Survey "Caregivers of neurologically ill, oncologically ill and elderly 2020" conducted on behalf of the Nutricia Foundation between 19.03-27.05.2020 by SW RESEARCH agency using online interviews (CAWI). Representative sample by age, gender, size of locality, n=500. The research sample was selected to represent 3 groups of respondents: caregivers or relatives of people with oncological diseases N=139, caregivers or relatives of people with neurological diseases N=152, caregivers or relatives of elderly people N=209.