Parent carers can find that having a child with additional needs or disability can have a significant impact on their emotional health.
We interviewed Joanna Griffin, a Chartered Counselling Psychologist and mother of a disabled son, who has been researching the impact on parents of children with additional needs or disabilities to find out more about how things are and what can be helpful for parents.
How did you become interested in researching parent carer mental health?
I qualified as a Chartered Counselling Psychologist in 2005 and mental health has always been an interest of mine. I’m fascinated by emotions and what they tell us about our life and being human. My interest in parent carer mental health began when my eldest son was born and, over time, gathered several diagnoses including cerebral palsy, learning disability and autism.
I was interested personally and professionally at my own responses and those of other parent carers who I met in various situations (through work and in special needs groups). There were many of us in difficult situations but nowhere to talk about these experiences.
Despite having many professionals in our lives no one was attentive to our emotional wellbeing. I became increasingly curious (and frustrated) which led me to start my Doctoral research into Emotional wellbeing in Parents of Children with a learning and/or developmental disability.
Why is there so little discussion and focus on the mental health of parents looking after neurodiverse learners or those with disabilities or mental health needs?
Good question and I wish I knew the answer. I’m unsure whether it’s because of a lack of awareness, a resistance to discuss a potentially difficult topic, reluctance to raise the issue because there are so few services offering support or there may be other more complex reasons.
When I started my research I suddenly had access to an academic library and found hundreds of studies highlighting the emotional impact on parents of disabled children – in particular increased anxiety and depression (especially when a child displays behaviours that challenge) as well as positive gains. The research is there and I’m not sure why so little of it has filtered through to practice and parents themselves.
I’m hoping to make research more accessible through my Doctoral products (including a book on this topic) as well as a project in which I’m involved, the Tizard Family Carer Research Alliance, established by the Challenging Behaviour Foundation and the Tizard Centre, University of Kent. The group brings together researchers and family carers to work together to co-produce better research. If any family carers would like to be involved they can find out more here.
What can parents do to protect themselves from these risks?
Finding your community who support and understand you and your situation is key. For many, this includes other special needs parents, but not always. Positive others who are empathetic, make adjustments and connect with you are important.
Finding special needs groups, online or face to face can help reduce isolation.
Sometimes there are increased demands on your time and resources which can lead to stress and burnout. Short breaks may be able to help, although obviously this is particularly challenging in the current Covid-19 climate.
If you can’t access respite then try make some time for yourself at home. Even 10 minutes peace and quiet with a cup of tea, chat with a friend or doing an activity that you enjoy and gives life a sense of meaning can help you regain the sense of balance we all need. This isn’t a luxury, it’s a vital part of our caring routine.
The practical and emotional aspects of wellbeing for parent carers can be intertwined so ensuring you are receiving the help you’re entitled to – such as benefits, legal advice – can help. There are charity helplines who can advise and support you in these areas. There are times when you may need to speak to a professional to get support – this may be your GP, paediatrician or a counsellor. In some areas there are counselling services connected to the Child Development Clinic or Child and Adolescent Mental Health Services (CAMHS). You can also find organisations and private practitioners who offer emotional support to parent carers at http://www.affinityhub.uk. (NB: there will be a charge for the private counsellors).
Do you think there is enough support available to parents? If not, what support should be available?
Quite simply, no.
There are a lot of charities doing great work and little pockets of good support in certain areas but it is very inconsistent, sporadic and even when support is received it feels temporary as if it could be taken away at any point. This is very de-stabilising for parents and adds to the ongoing sense of anxiety and being ‘on edge’ that many parent carers report. Disabled people and their families have been disproportionately affected by austerity.
Ideally support should address the emotional and practical needs of parents simultaneously. So having access to good advice from experts about, say behavioural strategies, speech and language or occupational therapy at the same time as emotional support would be ideal.
If services were better coordinated, flexible and responsive to parents’ needs it would save so much wasted time and energy. Support while waiting for diagnosis as well as at the point of diagnosis is severely lacking. Ideally support empowers parents so that they feel they have some sense of control to counter the helplessness that we often experience. Services need to respond to the specific needs of the family and child rather than feel they are given text book or off the shelf interventions or responses. Person-centred approaches build trust with families and are thereby experienced as supportive rather than adding to the stressors.
What would you change if you could change the system? How would it look?
Along with ensuring that guidelines, laws and policies were adhered to across the board to support parents (which they are not always) I have some specific wishes, outlined below:
I strongly believe some sort of emotional support should be available for parent carers at various points along the disability journey. This would include at diagnosis but many parents indicate that they would like to access emotional support, as and when, over a longer period of time. So when things change, as they will inevitably as your child grows and develops, you can seek timely support as necessary. What the support looks like will vary according to what parents need – groups, 1:1 support, integrated within other services, telephone or online help and advice.
Encouraging parents to re-connect with something that gives purpose and meaning in life can greatly improve wellbeing. Our own lives and personal development shouldn’t stop because we become a parent or a carer. They may be put on hold for a while but that shouldn’t be permanent.
Compassion and Understanding
I wish the whole system, including services and society, could develop greater compassion and understanding.
Prejudice and stigma are still rife and negatively impact all aspects of life.
We can help advocate for greater acceptance, inclusion and accessibility but sometimes ‘the fight’ takes its toll.
Reducing pressures on parents in other ways (i.e. school homework, work pressures) would help them free up a bit more time for themselves and their child.
I would also like to remove parental guilt which seems prevalent. It isn’t warranted and it really doesn’t help parent carer wellbeing. We’re all doing our best in an imperfect system there is no need to add guilt to our mental load.
Your work has highlighted benefits parents have gained from supporting their children, how would you describe these?
We learn about ourselves and life from our children. In research studies and in my own discussions with parents they commonly report having learnt to:
– connect with their child in new and powerful ways that has changed their outlook on the world
– accept uncertainty and realise that no one’s life is ‘picture perfect’
– celebrate achievements, however small, delayed or different they may be in the eyes of other parents
– put life into perspective and see what is really important
– develop closer and more loving relationships across the whole family – advocate to make life better for their child and others.
Is there anything else that you would like to add?
Thank you for making contact and your interest in parent carer mental health. Raising awareness is the first important step in supporting one another and helping parent carers realise they are not alone.
There are more tips on looking after your emotional wellbeing at: www.affinityhub.uk/6/wellbeing