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The role of relatives needs to be highlighted in cancer care

Photo of woman
Marlene Malmström. Photo: Åsa Hansdotter

Although patient influence in healthcare has gradually started to increase, the role of the patient's next of kin is still very limited. Despite the fact that the disease affects the whole family, public healthcare often does not utilise the patient's relatives as a resource.

A lot has happened in cancer care since Marlene Malmström started working in surgery many years ago. At that time, pretty much all the focus was on medical treatment and on saving as many patients as possible. Now, the healthcare system increasingly sees the person behind the diagnosis and shows an interest in the patient's experience of the entire disease process. Nevertheless, public healthcare still has a long way to go, as the patient's relatives are often still largely invisible.Even if you only get cancer in one organ, the whole person is affected by the disease, as well as their family. This is why it has been important in my research to examine how the patient and their relatives experience the entire process, to enable us, in public healthcare, to treat them in the right way", says Marlene Malmström.

She has chosen to research two essentially quite different cancer diagnoses: oesophageal cancer, which is uncommon but causes significant symptoms and has a low survival rate, and breast cancer, which in contrast has many patients but a high survival rate. The support should function regardless of what type of cancer diagnosis you have, which is why her research takes the patient's own experiences, and the family's needs, as its starting point.

Most of them manage well with the support they receive. But there are patients who have additional needs, which must be discovered so that the right resources can be engaged in time. We should not aim to give everything to everyone, but instead to personalise the support – which is good from a health economics perspective as well."

Marlene Malmström uses a model that applies systematic screening to identify patients with a greater need for support during their rehabilitation. On the basis of this model, she subsequently created an evidence-based decision-making support template for nurses in breast cancer care. But the rehabilitation process for cancer patients needs to be reviewed as well, she found. The advice that patients receive is mainly aimed at treatment and the medical aspects. A broader focus is required, including the whole person, and planning for recovery needs to start earlier. 

In addition, we need to increase the collaboration between various research disciplines. What is needed is a holistic perspective on the patient – not only in the clinical setting but also in the research community. The patients do not want to be seen in a fragmented way; they expect us to take a holistic approach to their disease process. They do not want to get to the next treatment unit and realise that the staff there have no idea what has been said and done previously."

Still today, public healthcare often does not make the most of patients' relatives as a resource. Letters summoning cancer patients to hospital visits encourage them to bring someone with them, but the patients' next of kin need to be involved to a much greater extent.

Patients sometimes say they feel like villains because their loved ones do everything in their power to support them, but still feel inadequate. Roles change when someone falls ill, and relatives need to get the right information and be supported in their new role.

In general, healthcare staff do not have sufficient knowledge about the family's major role. It is a combination of culture and tradition that persists, but it is also due to structural problems in the healthcare organisation. It is not unusual for cancer patients' next of kin to be put on sick leave themselves, because it is such a strain to support a relative with cancer. Within public healthcare, we need to get better at offering help to the rest of the family when someone gets a cancer diagnosis", says Marlene Malmström.

Relatives can feel guilty because they are suffering too but feel they have no right to talk about themselves when someone else actually has cancer. So it is incredibly important that we get better at seeing the disease in a broader perspective in which relatives also have a natural place", she concludes.

 

 

 

 

 

 

 

Advice to people with a family member who has cancer

•  For many people, a good way of starting to manage the new situation is by getting more information about the disease.•  You can be of great support by being present at the patient's side, to listen, show consideration, accompany them to doctor's visits, etc.

•  Help the patient to keep in touch with everyday "ordinary" life, by maintaining certain routines and habits.•  Finding out about a life-threatening diagnosis often sets off a life crisis. Sometimes the people in a family can fall out of sync in this process – it helps to be aware of this.
•  Ask other people around you to help with practical things.
•  Don't forget your own needs. It is not unusual to feel inadequate and to feel guilty for thinking of your own needs. Ask at the hospital about patient associations and groups for patients' relatives if you need to talk to someone in a similar situation.

Source: Allt om cancer, Swedish Cancer Society

Marlene Malmström

Position: Registered nurse and Research, Development and Training (FoUU) manager in the field of surgery and gastroenterology at Skåne University Hospital, and researcher at the Department of Health Sciences and Palliative Development Centre

Recent Achievement: Was awarded the LMK Foundation’s 2018 Prize for Medicine for her research on the perspective of patients and their relatives on the cancer process.