LUMC develops the Family Box: support for family members of heart patients.

Family members of heart patients want to support their loved ones in recovery and reduce the risk of future heart problems. But they often don't know how. "Is it safe for my husband to exercise again, or should he still be cautious?" Partners and other family members will soon get answers to such questions in the Family Box from LUMC.

The Family Box is scientifically supported by various Medical Delta researchers, including the research of Medical Delta PhD candidate Julian Houwen (Healthy Society in Medical Delta: lifestyle & prevention). This article was previously published on the LUMC website.

"A heart attack makes a big impact on the entire family," says Veronica Janssen, associate professor and psychologist for Cardiovascular Diseases at LUMC, and one of the Program Leaders of the Medical Delta Program ‘Owning your health’. "Sometimes it's the partner who called 112. They say: 'I saw everything. My husband was unconscious and I thought he was dying.' The partner still wakes up in the middle of the night thinking: is he still breathing? But rarely are partners asked: 'Hey, how are you doing?' The focus is primarily on the patient. Partners often feel they are not adequately informed about how to act, for example, when their husband measures high blood pressure at home."

Patients with a chronic condition, such as heart disease, usually spend only a short time in the hospital. They are at home for the majority of the time. However, healthcare providers currently focus primarily on the patient, rather than on the home front. According to Janssen, the impact of a heart attack on the family and other informal caregivers deserves more attention. "It's not just emotionally challenging. The caregiver in a family suddenly has to manage the household on their own, while also juggling their own job, taking the children to school, and bringing the partner to rehabilitation."

Improving lifestyle

According to cardiologist and Medical Delta professor Douwe Atsma, we need to involve the family more in the care of patients. Not only because a heart attack is a significant event, but also because family members play an important role in improving lifestyle. "About 80% of heart diseases are caused by an unhealthy lifestyle. Eating well, exercising enough, not smoking—all of this happens within the family context. They eat the same meals in the evening and may even share a cigarette afterward. As a doctor, I tell my patient to live a healthier life, but think about how difficult that is. When someone returns home from the hospital, they face the same living situation and often slip back into old habits."

Family members are eager to help reduce the risk of further heart problems, as Julian Houwen, a PhD student in Design and Medical Delta doctoral candidate at LUMC and TU Delft, hears in all the conversations he has with patients and their families. However, they often don’t know how to help. "For example, partners wonder if they’re being too controlling when they say, 'No, you can’t have those fries!' Right now, there is no place where caregivers can easily ask these kinds of questions. That’s why we’re developing the Family Box. This is a platform where the entire family receives support with care and lifestyle throughout the disease trajectory."

Objective measurements

The Family Box is an extension of The Box: a package with various devices for conducting home measurements. With The Box – which has been around for over ten years – patients can measure their blood pressure, take an ECG, or consult their doctor via a digital consultation. Atsma explains: "For cardiovascular diseases, blood pressure must not be too high. I explain to my patients that they can influence their blood pressure through a healthy lifestyle. When they eat healthy meals, get enough steps, and sleep on time, they will see their measurements improve. Through their smartphone, those measurements are sent to the Medical Service Centre at LUMC. If the blood pressure remains too high for an extended period, we contact the patient."

“The patients I have spoken to all have such a box in their home,” says PhD student Houwen. “Partners say they really enjoy being involved in the measurements. One patient, for example, mentioned that every evening around 8 p.m., before watching TV, he measures his blood pressure. His partner always watches along. It’s their moment to reflect on their health and lifestyle as a family. The measurements give the family an objective insight into how things are going. It provides reassurance. If the blood pressure is good, they think: I don’t need to worry for now.”

Support for the family

According to psychologist Janssen, the objectivity of measurements is important because overprotection can also be a risk for heart patients. Partners may say, "Take it easy, what if something happens?" This concern is well-meaning, but patients may feel restricted in their daily activities because of it. Janssen explains: "At the same time, partners are often the first to notice when something is wrong with the patient. 'As soon as she comes in, I can tell,' said one partner. 'She looks pale, she’s tired. Then I ask if she has chest pain, and she says, ‘No, I’m fine.’ Caregivers look for something objective in these situations to know whether they should intervene or not. It is important that the hospital supports and trains them better so they can learn how to monitor the patient’s health and when to take action."

“The Family Box is designed to help caregivers with this,” Atsma adds. “The existing Box is patient-focused and aims to educate patients about their condition and healthy lifestyle. With the Family Box, we extend that support to the family. The family also needs to understand what high blood pressure means and when to be concerned. Can someone with a slight pain still walk alone in the woods, or is that life-threatening? With the Family Box, the whole family can learn what heart disease really is and how to manage it healthily in daily life. They can also work on their own lifestyle to become healthier together with the patient.”

Needs of patients and caregivers

For the development of the Family Box, PhD student Houwen has already spoken with many patients and caregivers. According to him, the Family Box must meet their daily needs. "I had them fill out a 'patient journey' on paper, from the hospital admission to the follow-up care. I then asked questions such as: 'Where are you in life right now, and what challenges are you facing? Where have you missed support? How can we help you better?' Only when we understand the care needs of patients and caregivers can we develop a suitable digital platform together with them. Of course, e-health is about smart interventions, but the technology is just the implementation of the underlying care concept."

Conversations with patients and caregivers reveal that they do receive valuable support after the heart attack: at the rehabilitation center from the physiotherapist and rehabilitation doctor, and during outpatient visits with the nurse specialist. However, outside these moments, they experience uncertainty because they are responsible for their own recovery. Atsma: "Of course, patients can still ask me questions during the digital consultation, but ultimately, the patient is responsible for maintaining a healthy lifestyle. E-health can provide support in this regard."

‘Teachable moment’ 

Atsma is convinced that the Family Box will help patients and their families make healthy choices: serving more vegetables, quitting smoking, taking more walks. It's a win-win situation. "If the household members of the patient have an unhealthy lifestyle themselves, the Family Box is also good for their own health. Family members motivate each other and possibly even people outside the household. In this way, we are promoting the prevention of cardiovascular diseases within a broader social network." According to psychologist Janssen, an illness is a ‘teachable moment’ that is not yet sufficiently utilized in healthcare. "A heart attack is a significant event, but it’s also a great opportunity for the family to start living healthier."

The goal is to provide the Family Box to the first heart patients at LUMC starting in 2025.