Charity supports use of telehealth technology in the care of critically-ill children

ACT, which campaigns for the development of children's palliative care services, has developed an information sheet aimed at healthcare professionals challenged with providing care for children and families in remote areas.

Telehealth empowers individuals experiencing life-limiting illnesses, as well as their familes and carers, through the provision of clear lines of real-time communication

The document states: “There is a good case for telehealth being used to complement existing children’s palliative care services for families that live remotely or at a distance from specialist services. Telehealth can enable them to have more choice over how and where they receive their care. If telehealth can be accessed from home it could be an effective mechanism to enhance optimal care to most, if not all, life-limited babies, children and young people, as well as their families, regardless of where they live.”

While there is not yet much concrete evidence regarding the impact of telehealth in support of children’s palliative care services in the UK, the guide states that pilot studies are beginning to be rolled out, with published literature already being seen in Australia, Canada and the USA.

The report says: “The dynamic nature of symptoms related to children’s palliative care means that children and families need to report symptoms as they are happening, rather than waiting until a health professional visits. Despite the face that many families wish their child to remain at home and in their own community, they are often unsure of who to contact and how when they need support.

“Telehealth empowers individuals experiencing life-limiting illnesses, as well as their famiies and carers, through the provision of clear lines of real-time communication. It predominately involves healthcare interventions delivered by specialist staff, often in hospitals, to remote locations including families’ homes. As such, telehealth acts as a bridge between the patient and the specialist centre and is set to enhance, rather than undermine, local care and support.

If telehealth can be accessed from home it could be an effective mechanism to enhance optimal care to most, if not all, life-limited babies, children and young people, as well as their families, regardless of where they live

“For professionals, being able to see, as well as talk to, patients and their families is often preferable to using the phone. Capturng non-verbal communications and using the camera as a diagnostic tool can make a significant difference to clinical outcomes and the quality of care offered to children.”

A case study included in the guidance tells the story of four-year-old cancer sufferer, John, whose family was provided with telehealth technology in the last months of his life. It states: “After gaining the consent of the parents, a laptop unit was installed in the home and training was given to all users. John adjusted very quickly to talking to his nurse on the screen and the clinical team found this to be a very effective tool for the delivery of remote services when and where they were needed.

Telehealth acts as a bridge between the patient and the specialist centre and is set to enhance, rather than undermine, local care and support

“John died at home in the arms of his mother a few hours after the team visited him for the last time. The housecall was prompted following a scheduled telehealth session where it was clear John was at the end of his life. It was this call that made such a big difference and enabled John to experience a good quality of death – something that would have been more difficult without being able to establish the telehealth link. Returning the telehealth unit shortly after John’s death, his mother wanted to stress that it was the effective link through the telehealth technology, which made her feel safe at home.”

ACT is now calling for the wider promotion of telehealth as a viable mechanism to support 24-hour care and support for children with complex health conditions, particularly where they are at the end of their life.

A spokesman said: “There are estimated to be 23,500 life-threatened or life-limited children in the UK and half of these will have substantial palliative care needs at some point.

“It is estimated that around 80,000 to 100,000 family members and carers provide 24-hour care and support for a child, many of whom have very complex healthcare needs and disabilities.

“Embedding new communication technologies and associated practices may enhance the provision of children’s palliative care and supports continuous symptom assessment, review and control. It may also support better access to specialist advice.”