Experts call for more support for parents of children with genetic learning disabilities

March 10, 2020

Parents of children with genetic conditions that cause learning disabilities are at risk of mental health problems, suggests new research published today in the British Journal of Psychiatry. The teams behind the study have called for greater support for parents whose child receives a genetic diagnosis for their learning disability.

As many as one in 20 families worldwide is thought to include a child with a learning disability, but little is known about how this affects the parents' mental health and wellbeing. Although some parents experience depression and anxiety, it is not clear why some are at greater risk than others.

Professor Claire Hughes from the University of Cambridge Centre for Family Research, said: "It's important that we understand why some parents are at greater risk of mental health problems than others. If a parent experiences long-term mental health problems, this could have a knock-on effect on the whole family, affecting partner relationships, the wellbeing of their child with disability, and the experiences of siblings. That's why interventions are often more successful when they are designed to help parents in order to help children."

To address this question, Professor Hughes assembled an interdisciplinary team of researchers from the Universities of Cambridge and Birmingham to analyse information from 888 families taking part in the IMAGINE-ID study - a UK-wide project examining the links between genetic diagnoses, learning disabilities and mental health. Parents were asked to rate their everyday feelings and the nature and impact of their child's difficulties, as well as to provide information about their family's social circumstances.

One parent who participated in IMAGINE-ID said that professionals tended to focus on the child's needs and did not consider the wider needs of families: "It's very much about getting support for your child. At no point were we ever offered any mental health support, even though we have such a massive role to play in bringing up our children. We need support as well."

The study data shows that rates of negative symptoms such as worry, anxiety and stress were much higher in the IMAGINE-ID group of parents than in the general population of parents. Mothers in the IMAGINE-ID study - who were more likely to be the main caregiver - were particularly affected. Contrary to evidence from previous studies, social factors did not predict a parent's risk of low mood and stress: more important were the type of genetic disorder that affected their child, their child's physical and medical needs, and their child's behaviour.

For the first time, the researchers were able to demonstrate that the cause of a child's disabilities is one factor that predicts the emotional wellbeing of parents. A subgroup of genetic disorders is caused by short missing or duplicated sections of DNA (known as 'copy number variants'). Parents within this subgroup reported that their child's difficulties had a high level of impact on family life as well as restricting their child's activities and friendships, and these impacts were the source of their own distress.

The researchers say there could be a number of explanations for these findings, varying from the complex effects of chromosomal differences on children's development through to the availability of support for these families. They have called for more multi-disciplinary, family-focused research to determine how genetic diagnoses are linked to parents' mental health, so that support for families can be improved in future.

Dr Kate Baker, lead author of the research paper, based at the MRC Cognition and Brain Sciences Unit, University of Cambridge, said: "These results suggest that we need to start looking at genetic diagnoses as useful not just for predicting a child's needs and informing the support that they might receive, but also for predicting the broader impact that the diagnosis will have on their family."

Francesca Wicks, former research coordinator for IMAGINE-ID and now Family Support and Information Officer for Unique, the rare chromosome and single gene disorder support charity, said: "It's clear that not enough care and support is being offered to parents before, during and after their child's diagnosis. The help and support offered by organisations such as Unique is incredibly valuable, but much more needs to be done within health and statutory services. Many of the families I have met have expressed feelings of anxiety and depression over the years, which is why we have produced our Carers Wellbeing guide."
-end-
The IMAGINE-ID study is funded by the UK Medical Research Council and Medical Research Foundation.

Reference

Baker, K et al. Childhood intellectual disability and parents' mental health: integrating social, psychological and genetic influences. BJPsych; 11 March 2020; DOI: 10.1192/bjp.2020.38

University of Cambridge

Related Mental Health Articles from Brightsurf:

Mental health strained by disaster
A new study found that suicide rates increase during all types of disasters -- including severe storms, floods, hurricanes and ice storms -- with the largest overall increase occurring two years after a disaster.

The mental health impact of pandemics for front line health care staff
New research shows the impact that pandemics have on the mental health of front-line health care staff.

World Mental Health Day -- CACTUS releases report of largest researcher mental health survey
On the occasion of 'World Mental Health Day' 2020, CACTUS, a global scientific communications company, has released a global survey on mental health, wellbeing and fulfilment in academia.

Mental illness, mental health care use among police officers
A survey study of Texas police officers examines how common mental illness and mental health care use are in a large urban department.

COVID-19 outbreak and mental health
The use of online platforms to guide effective consumption of information, facilitate social support and continue mental health care delivery during the COVID-19 pandemic is discussed in this Viewpoint.

COVID-19 may have consequences for mental health
The COVID-19 pandemic appears to be adversely affecting mental health among hospitalised patients, the healthcare professionals treating them and the general population.

Mental health outcomes among health care workers during COVID-19 pandemic in Italy
Symptoms of posttraumatic stress disorder, depression, anxiety and insomnia among health care workers in Italy during the COVID-19 pandemic are reported in this observational study.

Mental ill health 'substantial health concern' among police, finds international study
Mental health issues among police officers are a 'substantial health concern,' with around 1 in 4 potentially drinking at hazardous levels and around 1 in 7 meeting the criteria for post traumatic stress disorder and depression, finds a pooled data analysis of the available international evidence, published online in Occupational & Environmental Medicine.

Examining health insurance nondiscrimination policies with mental health among gender minority individuals
A large private health insurance database was used to examine the association between between health insurance nondiscrimination policies and mental health outcomes for gender minority individuals.

Mental health care for adolescents
Researchers examined changes over time in the kinds of mental health problems for which adolescents in the United States received care and where they got that care in this survey study with findings that should be interpreted within the context of several limitations including self-reported information.

Read More: Mental Health News and Mental Health Current Events
Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.