Mental health & wellbeing in Advanced Illness Network (MAIN)

MAIN will bring together academics, clinicians, service managers, patient and carer representatives and policy-leads to advance a research agenda to improve mental wellbeing for people approaching end-of-life, and their caregivers, across the UK.

Despite over 750,000 people dying each year in the UK (approx. 550,000 in England, 60,000 in Scotland, 36,000 in Wales, and 17,000 in Northern Ireland), mental health support for those approaching end-of-life is limited.  The lack of support extends to both the person dying, and those close to them such as family and friends. Access to psychological, psychosocial, and spiritual support to optimise mental health and wellbeing is an essential component of palliative care. Yet, evidence on effective psychological and psychosocial support in the context of deteriorating physical health is fragmented and lacks visibility.  Consequently, there is little accessible evidence to guide best practice in relation to supporting people with emotional and existential distress due to advanced illness.   

Network Objectives:

  1. To bring academics from multiple disciplines and institutions together with stakeholders from the NHS and third sector, and people with lived experience to prioritise key areas for future research on psychological, psychosocial, and spiritual care for people impacted by an advanced or terminal illness, including caregivers  
  2. To deliver 10 webinars focused on mental health and wellbeing for people impacted by advanced progressive illness
  3. To progress research funding opportunities on mental health and wellbeing towards end-of-life
  4. To host two in-person full day hybrid networking events
  5. To promote knowledge exchange on mental health and wellbeing towards the end of life via social media and a digital platform
  6. To identify policy levers for better mental health and wellbeing support for people impacted by advanced progressive illness
  7. To develop a plan for network sustainability beyond the initial 2-year funded period

Intended Impact:

Our network will accelerate the development and implementation of evidence-based interventions to support the mental health and wellbeing of people with advanced illness, and their caregivers. NHS and third sector partners can use this evidence to inform service development, training, and clinical practice to improve psychosocial assessment and support; and to help people manage the psychological and existential concerns that come with a progressive illness.  Academics working across disciplines and institutions, will work collaboratively, with research users, to develop ambitious new research proposals, to address unmet psychological support needs of different groups such as parents of terminally ill children, older adults with dementia approaching end of life, and address the palliative care needs of people with existing mental ill health.  Early career researchers will benefit from the strengthening of interdisciplinary and inter-organisational relationships ensuring that their research is relevant and impactful.  Policy-leads will draw on the latest evidence to inform national policy and plans regarding mental health and palliative care.    

Funded by the Marie Curie Organisation.