Parent Carer Trauma

Parents and Carers of disabled children can be at risk of poorer mental health due to the demands and stresses of their role, for example, fighting for services and a lack of sleep. What is not always recognised is that some parents may also be experiencing trauma.

In this article, Dr Joanna Griffin, a parent carer and Counselling Psychologist, discusses trauma, where you can get support, and the Parent Carer Trauma Working Group.

Types of trauma

Research suggests that parent carers can experience traumatic events. These events may be:

• Major events – Big T trauma
• An accumulation of smaller events – Small t trauma
• Ongoing traumas

What causes this trauma may be different for different people.

Cumulative trauma can have a negative impact on our day-to-day lives and how we feel about ourselves.  However, it is not always recognised, and parent carers do not always receive appropriate referrals for support.

How trauma might present itself

Signs of trauma can include:

• Stress, anxiety and feeling ‘on edge’ – ‘hyperarousal’
• Reliving aspects of the traumatic experience and feeling like it is happening in the present moment – ‘flashbacks’
• Feeling numb, spaced out or detached from things going on around you – ‘dissociation’
• Sleep problems, including insomnia due to not being able to ‘switch off’ or nightmares that wake you up.

Examples of experiences that may be traumatic for parent carers

• Medical history –  being asked to repeat a traumatic medical history in each new medical appointment and having to give detailed information over and over again. The parent may appear tearful or somewhat detached and it may not be obvious to the listener that the parent’s behaviour is a survival response to repeated re-telling of past traumas.
• Managing services – Many parents become battle-weary due to the constant ‘fight’ for services and respite, plus negotiating complex appeal systems and multiple agencies. Sometimes the hard-fought-for service requires great effort to maintain on the part of the already exhausted parent.  This can lead to despair, hopelessness, and a sense of “giving up”.
• Abuse – Parent carers whose child has been abused in an institution (e.g. Winterbourne View) who were not offered professional help or an opportunity to collaborate with staff.
• Bonding and detachment – Some parents can feel traumatised by a struggle to attune to their child. Some struggle to bond with their premature baby if the baby needs to be in an incubator and is hospitalised for long periods as a neonate. Some feel emotionally and practically detached from their baby and ashamed that medical professionals seem to have a closer bond. Some parents have feared bonding in case their baby dies. The ensuing guilt around these types of responses can be overwhelming. A child with complex needs who does not respond in expected ways can leave parents doubting their parenting capacities and even their ability to love their child.

Parent Carer Trauma Working Group

Building on their personal and professional experience, a number of parent carer professionals established a Parent Carer Trauma Working Group to consider these issues further. The group has published a discussion paper on trauma and parents of children with Special Educational Needs and Disabilities, for professionals and parent carers.

The paper is a working document capturing key points discussed at the Parent Carer Trauma Working Group during 2022-24. The working group was established by a network of people who believed that parent carer trauma was often unrecognised, by both parents and professionals, and that it may be more nuanced in its presentation than previously realised.

The group brought together professionals, many of whom are also parent carers with lived experience of trauma, with considerable experience to discuss what parent carer trauma looks like and how we can best support those experiencing it.

The video explains further and you can download the paper by clicking on the yellow box below:

The Parent Carer Trauma Working Group wish to encourage discussion around this important topic. We hope that this will help parent carers seek the support they need and raise awareness amongst professionals to identify when a parent is traumatised and make appropriate referrals for support.  Furthermore, services must ensure that they do not re-traumatise parents by the nature of their interactions with families.

You can find further information about the Trauma Working Group here: Affinityhub – Trauma

Support

If you have been affected by any of the topics raised in this article, it may help to contact your GP to discuss NHS Mental Health support available to you. 

Other organisations that can help: 

• The WellChild Family Tree The WellChild Family Tree is a
  community of families in the UK with children who have complex medical needs; Connecting parents and carers to share experiences, advice, mutual support, and friendship.
• Samaritans – Whatever you’re going through, a Samaritan will face it with you! They’re open for you 24 hours a day, 365 days a year.
• BACP – an online therapist directory to search for a counsellor or psychotherapist by location, services, or specialisms.
• Mind – have a Helpline you can call to discuss mental health matters. The helpline is open 9 am to 6 pm, Monday to Friday.
• Birth Trauma Association – lists counsellors and therapists with specialist knowledge of trauma related to birth.
• Together for Short Lives – have a helpline that you can call and leave a message. They will call you back within 48 hours.
• Rainbow Trust– has expert family support workers who support the whole family.
• Respond– provides therapy and specialist support services to people with learning disabilities, autism or both who have experienced abuse, violence or trauma.

You can sign up to receive quarterly newsletters from the Affinity Hub on Parent Carer Wellbeing, including updates on the Parent Carer Trauma Working Group work, here.

If you have any comments, ideas, or suggestions about this article please contact us at [email protected]

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