STORIES FROM THE FAMILIES OF CHILDREN WITH A SERIOUS ILLNESS AND THE TEAMS THAT CARE FOR THEM
Day in a Life
What technology looks like in children’s palliative care over the course of a day
Over six months, we spoke with nine families and 10 clinicians across seven countries about how technology shapes children's palliative care. To bring their accounts together, we follow two composites: a mother and a clinician through a single day. The quotes come from many different parents and clinicians, not from these two people. You can open each moment to read what the wider research found.
Adaora
Mother. Caring for her son at home.
Dr. Priya
Palliative care physician. Community team.
Before the day starts
6:42
ADAORA
Family member
She is awake before her son. Something about his breathing sounded different overnight. She has been searching YouTube and online forums, trying to work out whether it is something to worry about.
“It’s hard to know for families when something is natural or if it’s something that they need medical support.”
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Emotional support and being alone with worry
Families described the early hours of the morning, when symptoms shift and no clinical team is available, as some of the most difficult of the week. Many turn first to general search and video sites because those are the ones that are open. Several spoke about the value of peer connection with other families who have been through similar experiences, and the difficulty of finding it.
"I needed mental support. Having someone to talk to who understood what I was going through made a big difference."
Family member
“Video calls for parental support groups [enable] parents with children with rare disease to connect if they live far away.”
Children’s palliative care provider
OPPORTUNITY AREA
How might emotional and peer support be made more accessible to families at the moments they most need it, including outside clinical hours?
DR. PRIYA
Children's palliative care provider
Dr. Priya is on the bus, reading WhatsApp messages from families who came in overnight. Four to triage before the day begins. A feeding tube. A pain question. One that mostly needed acknowledgment.
How might out-of-hours communication between families and clinical teams be made safer, more sustainable for clinicians and integrated with the rest of care?
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Communication with families between visits
Clinicians described overnight and out-of-hours contact from families as a regular part of the work. Much of it happens over WhatsApp and similar tools because they are what families already use. Not all of it is medical; some is reassurance, some is practical, some is the small interventions that keep care moving.
“Often we talk face to face. Sometimes we use WhatsApp to send messages and try to just be there for the family.”
Children's palliative care provider
OPPORTUNITY AREA
“Crisis lines are often not for medical crisis moments but are used for key moments like getting a feeding tube back in place that enable someone to carry on living the way they want.”
Mid-morning
10:15
ADAORA
Family member
The feeding pump alarm has gone off again. She works through the manual, then turns to Google, then YouTube, then the hotline.
“It would be helpful to have an app instead of written manuals, or video to walk through troubleshooting that you can watch. When technology fails, it can cause disruptions in care.”
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Support to use medical devices at home
Families described learning to use ventilators, feeding pumps, oxygen concentrators and suction machines mostly on their own. They turned to Google and YouTube when written manuals were not enough, and to their care teams when something more was needed. Step-by-step video, an accessible app rather than a long booklet and reliable out-of-hours support were the most commonly named needs.
“We used several medical devices to care for my child. At first, it was overwhelming to learn how to use all of them, but over time, I became more confident. I also used Google and YouTube whenever I needed help setting up the medical equipment.”Family member
OPPORTUNITY AREA
How might we create a place that has tips, video and instructions for different medical devices so that families are more confidently able to use these at home and seek support when needed?
DR. PRIYA
Children's palliative care provider
Between home visits, Dr. Priya is looking for a patient note saved in a shared Google sheet. It is the sixth time this week.
“We use Google Sheets to take notes, and then it’s put together for the patient. If we had a place for this, that would really help.”
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Patient notes
Clinicians across four countries described capturing patient information in whatever tool was at hand: Google Sheets, WhatsApp threads, free apps with uncertain futures and paper. Several were open to AI-assisted note-taking, with careful design given the sensitivity of the conversations involved.
“We use the Vula app, as we are an NGO. The hospitals get it for free. It’s a secure platform like WhatsApp where all docs, patients and X-rays are kept safe.”Children's palliative care provider
“AI - it’s a very hot topic right now, but it has to be used very carefully. We think that it could help clinicians to do note-taking.”Children's palliative care provider
OPPORTUNITY AREA
How might a service or tool be created to help support children's palliative care providers with capturing patient notes in an efficient and effective way that will work in multiple contexts?
Afternoon
14:30
ADAORA
Family member
A new specialist has joined her son’s team. She gives the full history again, from the start. It is the eleventh time this year. Her older daughter is at the kitchen table doing homework, half-listening.
“One of the most important aspects would be [to] find ways to use technology to share information amongst healthcare providers. Specialists rely on families to provide them with information. If there was shared access to information, there would be fewer errors.”
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Sharing information between families and providers
Families repeatedly described having to retell their child’s full history to each new clinician they encountered because shared records were incomplete or absent. The consequences ranged from frustration to medication errors. Families and clinicians alike named a single, accessible care record as one of the most useful things to build.
“Finding a way electronically to share healthcare documents, tests, consults and care plans amongst different specialists and agencies would be helpful. It would be even better if families and caregivers had full access to these documents as well, as they are often the ones sharing the information back to the various clinical teams.”Family member
OPPORTUNITY AREA
How might we create a shared, family-accessible record that travels with the child across providers and reduces the burden on families to act as the connective tissue between teams?
DR. PRIYA
Children's palliative care provider
A video consultation with a family three hours away. The child uses his eye-gaze device to spell out a word for his mother, who reads it aloud to Dr. Priya. He chooses a number on the pain scale. Behind him, a monitor beeps. Dr. Priya notes it but lets it be; the numbers are fine and the child is the one speaking.
“Telehealth has been a way to get support when you don’t have access to a hospital, or you can’t get there for a variety of reasons.”
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Reaching families through telehealth
Telehealth was named as a meaningful extension of clinical reach, particularly for families who could not easily travel to a hospital or hospice. Clinicians used video consultations to assess symptoms, support families practically and reduce travel time. The most striking moments inside these calls were often the ones where assistive technology let a child speak for themselves. Eye-gaze devices, communication apps and simpler tools (collectively known as ‘AAC’ or augmentative and alternative communication) allowed children to express pain, preferences and emotions they could not otherwise share.
“Telehealth has been a way to get support when you don’t have access to a hospital or you can’t get there for a variety of reasons.”Family member
“Now we use video calls as it helps us to assess the situation and helps us to physically assess the patient and it saves us time.”
Children's palliative care provider
“Communication devices helped us to know when our child was in pain and be able to know where the pain was coming from due to the ability to communicate with us through these devices. These devices used eye gaze and touch chat.”
Family member
OPPORTUNITY AREA
How might telehealth and assistive technology be designed and supported together, so that clinicians can reach more families and children can participate more fully in their own care?
Evening
19:00
ADAORA
Family member
Her son is settled. His older sister joins them on the bed, and the three watch his favourite show together on her phone. The break in the day matters to all of them.
“Playing with my child (using simple games and apps) helped lift my child’s spirits, and mine.”
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Technology and a child’s quality of life
Alongside the clinical uses of technology, families spoke about everyday devices and apps that supported their child’s enjoyment of life: games, shows, music and video calls with relatives. These are not peripheral to palliative care. They are part of what makes a day a good day for the child and for the family around them.
“I used YouTube to play short videos for my daughter while she was eating, which helped distract her and make mealtime more enjoyable.”Family member
OPPORTUNITY AREA
How might technology that supports children’s play, connection and enjoyment be more deliberately considered as part of palliative care, alongside clinical tools?
DR. PRIYA
Children's palliative care provider
From her kitchen table, Dr. Priya opens up her laptop to develop the next module of a nine-month online course in children’s palliative care. This program format fits around clinical work for junior doctors on her team.
“Conducting training in the virtual space and to help run the sessions in other countries. AI can help with training also — can help you role-play a difficult conversation .”
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Training, education and learning at work
Online courses, recorded webinars and remote mentoring were widely valued by clinicians, both as learners and as teachers. Specialised training in children’s palliative care is scarce in many places, and digital tools have allowed senior clinicians to develop material, supervise juniors and share expertise across borders that would not otherwise be possible.
“They have now developed a nine-month online course. This has been incredible, as it’s helping interested professionals get started online, and we will also do some face-to-face training. It’s great that it’s online, and they are able to do it in their own time; they also have webinars.”
Children's palliative care provider
OPPORTUNITY AREA
How might online training and continuing education in children’s palliative care be expanded, made more affordable and adapted for different healthcare contexts?
Late
23:48
ADAORA
Family member
Awake since 4 a.m. She turns to ChatGPT with a question she has not asked anyone else: What does end-of-life breathing look like?
“The reality is that parents are going to be using AI, so we need it to be reliable. They will put in symptoms and ask what to do or what does end of life look like.”
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Using AI to support care at home
Families described turning to general-purpose AI tools, such as ChatGPT, when they needed information late at night or wanted to ask a question they were not comfortable asking elsewhere. Clinicians acknowledged that this is already happening and raised the question of how to make the information families find more trustworthy and safer to act on.
OPPORTUNITY AREA
How might trustworthy AI tools be developed and signposted for families, so that the information they find early in the morning is safer, more accurate and more personalised to their child’s context?
DR. PRIYA
Children's palliative care provider
Her phone buzzes again, another WhatsApp from a family. She answers because there is rarely anyone else who can.
“Technology is helpful, but it’s not the main thing in children’s palliative care. It is helpful for improving the quality of life for children and families.”
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What technology is, and is not, for children’s palliative care
Across the interviews, clinicians returned to a shared view: technology in children’s palliative care is most valuable when it supports the human relationships at the heart of the work instead of replacing them. The most useful tools were those that saved time, extended reach or improved the quality of life of children and families. The least useful were those that added burden without changing outcomes.
OPPORTUNITY AREA
How might the field collectively prioritise technologies that strengthen relationships, extend the reach of small teams, and improve children’s quality of life, while remaining cautious about tools that add complexity without clear benefit?
Read more about the research underlying this narrative
Day in the Life came from listening to families, providers, technologists and innovators talk about their experiences.