Recognising the risks to parent carers' mental health
October 3, 2023
‘I feel like I’m running on empty’ – Parent Carer
If you’re a parent carer and have ever struggled mentally (and felt like you’re the only one) then this article will summarise some of the evidence that shows you are not alone.
This article isn’t intended to suggest that caring for your disabled child is a burden without positives. Parents love their child and often gain great joy and comfort from their children, whatever their needs. However, sometimes parent carers can struggle with poorer mental health, for a whole host of reasons, and then feel like they’re failing as a parent. Please be assured that this is not the case.
The reasons for the greater risk to parent carer mental health can be complex and varied. Families often experience numerous pressures, such as difficulties accessing good quality, appropriate supportin a timely manner (Stanford et al., 2020). There can also be other practical challenges (e.g. poverty, appropriate housing) (Resch et al., 2010), relationship difficulties (Hartley et al., 2010) as well as struggling with the demands of caring and work.
Several studies have suggested that parents of children with learning and developmental disabilities (e.g., autism) (LDD) can struggle with their mental health. One study suggested that mothers of children with LDD are about 1.5 times more likely than other mothers to experience depression (Singer, 2006), and similarly 1.4 times more likely than other mothers to have high levels of psychological symptoms indicative of mental health problems (Emerson, 2003). Fathers (Emerson et al., 2010) and siblings can also be negatively affected. Other emotions identified by parent carers include anger, grief or helplessness (Griffin, 2021).
I hope by illustrating these studies we can recognise that it’s often the environment that negatively affects us – such as fighting for services, little or no time for ourselves or social isolation. If we know we are not the only ones we can challenge any self-criticism at times of struggle and recognise the importance of reaching out to others in a similar situation.
What can help?
While some factors may be difficult to change there can be useful strategies that help support families.
Connect with others in a similar situation
Parent carers often report that finding other parents in a similar situation is beneficial. Finding those who ‘get it’ can stop us feeling isolated and alone as sometimes accessing ‘mainstream’ playschemes and playgrounds can be difficult. Furthermore, if our child is at a special school or regularly in hospital we miss out on those ‘school-gate’ moments that can forge community.
I will look at isolation in more details in my next article and share ideas of how to connect. A good place to start is via local charities (for carers or disabled children) or even online where there are special needs forums and closed Facebook groups (e.g.,ContactFB group).
Take a break
Some families manage to access respite orshort breaksthrough their Local Authority. You will need to apply and sometimes there is a long wait and limited support. However, if you can it’s worth giving it a go. Even knowing that you can get 2 or 3 days of playscheme for your child over a holiday can help give you a little bit of time to yourself. And your child can enjoy sometime away from the family home which, in turn, increases their independence. A word of advice – try not to use this time to clean the house or do boring chores, instead make sure you do something special for you (e.g., meet up with a friend, go somewhere you can’t normally go with children, lie in the bath reading a magazine).
Empower yourself
Parent carers often notice that as they become more skilled and gain greater knowledge (e.g. of the law, SEND policies and where to seek support for Education Health and Care Plans (EHCP)) they become more confident in themselves. This new competence can feel good and make us realise that we can support our child. It can also help us realise that the problem is often external, i.e. others not following the law or failing to engage in good practice), which in turns makes us realise that it’s not our fault if we find things difficult.
It can take time to gain this new found confidence, and at times it can be exhausting to be in constant ‘warrior’ mode.
‘Fighting for the EHCP (Education Health and Care Plan) that period of time, those two years, I think has put a lot of strain on myself, like I really got very sick, stressed… it was a really, really difficult time.’ – Parent Carer
However, there are organisations that can help you along the way such as:
The Council for Disabled Children
Disabled Children’s Partnership
Other organisations are listed onAffinity Hub.
In this article we’ve looked at some of the challenges that parent carers face to their own mental health. However, that is only one side of the story and in the next article we will look at the positives that parents identify.