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Mental health needs of parents and carers who have children with intellectual disabilities

The mental health and wellbeing needs of parents and carers who have children with intellectual disabilities: A systematic review of the evidence

What we are doing:

We are conducting a review of the literature to explore the mental health and wellbeing needs of caregivers, for example parents and other family, or informal carers, who look after a child with an intellectual disability (ID). For the purposes of our review we are using the term ‘child’ to refer to both those under the age of 18 years and adults who may still be being cared for at home.

Why we are doing it:

From co-production work with our Patient and Public Involvement group, we understand that family caregivers who support a child, or relative, with ID find it difficult to access support for their own mental health and wellbeing needs. The Sustainability and Transformation Plans (STPs) across the East Midlands highlight that ID are key priorities in terms of: (1) an increasing population; (2) the fragmented nature of service provision; and (3) high levels of vulnerability. The emphasis within the STPs to live within the STPs on enabling people with ID to live in the least restrictive settings and ideally within the community means that ensure good mental health and wellbeing for family caregivers is crucial.

What the benefits will be:

The aims of the review are fourfold: 

  • Identify the mental health and wellbeing needs of family caregivers of people with ID
  • Identify if there are any interventions which have been evaluated in relation to the mental health and wellbeing needs of this population
  • Highlight the gaps in the current evidence base to inform future grant applications
  • To provide a basis for starting conversations across stakeholder groups to explore areas for service development

Who we are working with:

Our partners on this project include:

  • School of Health Science, University of Nottingham
  • Nottinghamshire Healthcare NHS Trust
  • NHS Nottingham City Clinical Commissioning Group

Study lead:

Name: Dr Nicola Wright

Role: Assistant Professor in Mental Health

Organisation: School of Health Sciences, University of Nottingham


Nicola Wright,