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Brain injury education for families

By Dr Caroline Malone, Consultant Clinical Neuropsychologist at Priory Highbank Centre in Bury.

Involving and educating families is a very important part of healthcare, and in my experience at Highbank, it is imperative in the care journey that we provide.

We care for patients with progressive neurological conditions (PNCs) and acquired brain injuries (ABIs). Our patients range from being mobile and more independent to those who are in various degrees of prolonged disorders of consciousness (PDOC), or in vegetative states. In some cases, this means that families are the key point of contact for patients’ healthcare decisions.

As well as employing a dedicated family liaison officer, Highbank has developed and delivered our brain injury education for families (BIEF) initiative, which has been running at Highbank for a number of years. 

The programme was developed in consultation with the families of our patients. Delivered by our interdisciplinary team, the education programme covers a variety of topics, and is open to those family members who wish to attend.

The 2017/2018 programme included sessions on:

  • Introduction to brain injury
  • Respiratory care
  • Splinting
  • Functional activity
  • Promoting psychological wellbeing
  • Cognitive assessment
  • Infection control
  • Posture management and seating
  • Normal movement
  • Paroxysmal sympathetic hyperactivity (PSH) and dystonia management
  • Mental capacity assessment

How was the 2017/2018 initiative run?

Before the last series of sessions took place, families were invited to an initial meeting to discuss ground rules and to develop the programme with topics of their choice. It was important that the sessions being asked for could be delivered by our team, and that they were within their specialist areas.

Ground rules included:

  • Confidentiality
  • Sessions should be used for educational purposes and not to discuss individual patient care

Families were supported to only share the information that they felt comfortable and safe to do so. The sessions proved particularly useful in terms of peer support; families who had been on their journey for a long time were able to share experiences with families who were less familiar with brain injury.

To encourage attendance, our family liaison officer sent reminders to all the families, and left fliers in our dedicated family room. 

The sessions lasted for approximately an hour and took place one evening, every two weeks. They were informal but with a didactic element. 

We’ve received feedback from family members that they found the sessions enjoyable and informative.

Future directions

The biggest challenge to running such an initiative has always been attendance. In order to make it as useful as possible for our families, they were asked to decide upon the topics.

We plan to continue to grow and evolve our BIEF programme and work with families to put together a programme best suited to their needs.

Enquiries and Referrals

For further information on Priory services offered to the NHS, including rehabilitation-focused treatment programmes for those living with a brain injury, please call our dedicated 24/7 customer service centre on 0800 090 1356. Alternatively, click here to submit an enquiry form

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