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Further information for those providing support to carers

The responsibility of being a carer can negatively impact their health and functioning, and leave most carers with information and support needs of their own.

Helping carers to adjust to and understand the changing needs of their relative with psychosis can improve their wellbeing and impact how the relative with psychosis feels. Treatment guidance (e.g National Institute for Health and Care Excellence) and best practice guidance recommend the provision of active support carers.

In accordance with NICE Guidance there is a minimum standard expectation that carer focused support programmes are offered as early as possible to all carers. There are structured family interventions that are recommended by NICE as part of the overall care for the person who may be experiencing psychosis; however there are also specific support mechanisms for the carer that should be considered:

  • Emotional support – Different strategies focusing on individual and group based carer support have been evaluated, and some work better for people than others. At an absolute minimum, all identified carers should be provided with updated information on local carer support groups, and support and crisis helplines.
  • Group psychoeducational and support interventions – group sessions helping with explanations of psychosis, care in crisis moments, sharing stories and finding support by understanding that they are not alone has seen great gains in those who have used it.
  • Individual psychoeducational interventions – for a variety of reasons, a carer might be unable to attend group based psychoeducation programmes so individual sessions might be helpful. The content of the session can be tailored to the family circumstances.
  • Mindfulness and ‘third wave’ approaches – In a move away from the traditional therapy focus on content of thoughts, the third wave interventions target an individual’s thinking styles, and how they relate to their thoughts. Evidence on mindfulness is growing and should be considered.
  • Self-help, guided and digital interventions – The interventions are typically packaged as being cost effective, less demanding of clinician resources, and can offer opportunities for online social networking. They also afford carers a greater degree of flexibility in when they want to engage with the intervention.
  • Relapse prevention – working together with clinicians to develop a relapse (crisis) plan can help the patient with their recovery and a carer’s understanding about the ways in which they might be able to help (e.g. spotting early signs, what they can do, who can they contact, etc).
  • Self-care: Sleep – during stressful situations, it is highly documented that sleep patterns can be disrupted, leading to adverse effects and impacting quality of life. Methods to help manage sleep patterns and improve sleep quality can positively impact overall caregiving experiences.


Finally, it is equally important for staff supporting carers to also consider their own support and supervision needs. Staff can often be left feeling somewhat helpless or frustrated about not being able to offer a ‘solution’, which can consequently affect the staff members’ ability to engage with carers. Ensuring staff are also accessing the right level of support for their own carer support work is important.

Dr Juliana Onwumere, Senior Lecturer in Clinical Psychology at Kings College London has written a report on the support available to carers and its effectiveness, on behalf of the Early Intervention in Psychosis Clinical Reference Group; from which this above advice has been extracted.

The importance of seeking feedback from carers about their experience of a carer focused intervention would be important as part of efforts to improve the quality of the initiative and helping the service to be responsive where possible, to the presenting needs of carers.