Trauma and parent carers

Imagine you're the primary care giver of a child with additional needs – perhaps complex medical conditions, physical difficulties, learning and developmental disabilities, or neurodiversity. You have to adapt to the additional stressors in your life, and navigate systems around your child (education, health and social care). Maybe you face stigma and discrimination, as well as experiencing blame or not being believed when you raise concerns regarding your child (Clements & Aiello, 2022). So perhaps you might expect to be at greater risk of poorer mental and physical health. What is not always acknowledged, though, is that you may also be experiencing trauma.

Parent carers may experience both major 'Big T' trauma events, and cumulative 'small t' traumas. If we focus solely on 'Big T' trauma, the case for trauma-informed support for parent carers may be missed. 

What can trigger parent carer trauma?

• Inaccessible services: parent carers can become battle weary due to the constant 'fight' for respite, and negotiating across complex appeal systems and multiple agencies, which may lead to despair, hopelessness and a sense of 'giving up';
• Attending the same hospital, or similar, where birth trauma happened and bad news was delivered;
• Anxious uncertainty about child's prognosis/diagnosis whilst on long waiting lists;
• Witnessing their child's invasive medical procedures or distressing physical symptoms;
• Trauma memories being triggered by having to repeat difficult histories;
• Displaying severe behaviours that challenge (e.g., child-to-parent violence);
• Being isolated or losing contact with friends and support networks;
• Experiencing inquiries into institutional abuse, e.g. in Margaret Flynn's serious case review of the Winterbourne View Hospital, she noted cases of families being threatened with the improper use of mental health legislation;
• Seemingly small incidents (such as a report being lost) which can take on heightened sense of 'risk'.

Given the link between trauma and poorer mental health, parent carers must receive support for trauma in a timely and appropriate manner. This is a group who report more symptoms of mental health problems (Rydzewska et al., 2021), are at increased risk of stress, anxiety, distress and depression (Singer, 2006), and report other difficult emotions such as guilt, helplessness and hopelessness, a sense of loss, envy of other families and exhaustion (Griffin, 2021). 

Truly trauma-informed services would recognise the need all of this creates for the whole family to be given time and attention – 'the support that they want and need when they are ready (not what and when suits the system) to reduce feelings of helplessness' (Emerson, 2019).

And yet, we would argue, there is a knowledge-gap, and a lack of awareness around support options. So through networks developed via the lead author's website, we convened a Parent Carer Trauma Working group. As professionals, many of whom are also parent carers, we produced 'Parent Carer Trauma: A discussion paper on trauma and parents of children with Special Educational Needs and Disabilities (Parent Carers)'. 

Here, we summarise some of the key points.

A life of trauma

Trauma can occur as early as pre-conception genetic screening, when a scan reveals a life limiting condition or diagnosis, or at birth or when a diagnosis is made. 'Parents frequently described the delivery of bad news as being catastrophic' (Emerson, 2019). 

Trauma can also be experienced at the point of significant milestones which may be missed or delayed, transitions (to secondary school or to adulthood), or changes to behaviour or health of child. It can also occur during medical procedures, with one parent carer commenting:

'I've seen my daughter have a lumber puncture without any anaesthetic and they literally held her down, it was a room full of doctors and they held her down like an animal and they shoved a syringe in her spine. I swear nobody wants to ever see anybody have that happen to them, but for a parent to see that to a five-year-old child, you know, that's brutal.'

Parents describe being constantly 'on edge' over long periods of time. Symptoms may include increased anxiety and hypervigilance (and this may be justified if their child is at risk, for example of having life threatening seizures).

In addition, parents may experience 'affiliate stigma' – prejudice or discrimination through their association with their disabled child. 'Psychological weathering' (cumulative burden of stressors often experienced by minority groups) may have relevance to this group and the ongoing impact over time.

Distress can be expressed in many ways, including through anger. This may be turned inward (blaming themselves) or outward (onto organisations and professionals). Parents may become labelled as 'difficult' and lose trust, making continued contact with professionals challenging. Some parents also report that anger is motivating to keep up 'the fight' for scarce resources; however, this can be exhausting to maintain over time. 

A significant concern that looms large for many parent carers is 'who will look after my child when I am dead?'. George Bonanno's work on trauma identifies hope about the future as one of the three key tenets of the 'flexibility mindset' needed to manage trauma effectively (along with confidence in our ability to cope and willingness to think about a threat as a challenge). For some parent carers, this does not seem possible. 

Diagnostic definitions

Current diagnostic definitions do not always fully capture the experience of parent carers. For example, parents may meet only some of the criteria for Post-Traumatic Stress Disorder, and their traumatic experiences may be ongoing.

There are, however, a range of possible definitions that may be relevant to parent carers. In their study, Blackman et al. (2022) use the term 'complex trauma' to capture the experiences of families that have children and adults who have a learning disability and/or are autistic.  Although complex trauma is often used in relation to early developmental trauma, it can also include being in a threatening situation (in adulthood) from which you cannot escape. 

The Diagnostic and Statistical Manual (DSMV) does not currently distinguish complex trauma from Post-traumatic Stress Disorder; however, the 11^th version of the International Classification of Diseases (WHO, 2018) does. ICD11 defines complex trauma as arising after exposure to an event or series of events of an extremely threatening or horrific nature, most commonly prolonged or repetitive events from which escape is difficult or impossible (for example, torture, slavery, prolonged domestic violence, repeated childhood sexual or physical abuse).

'Prolonged Duress Stress Disorder', which Marsh (2003) proposes only differs from PTSD with regard to the absence of a 'traumatic event', may describe some parent carers' profiles. It has been noted to be caused by long term care for a relative (Scott, 2013). In particular, the cumulative and ongoing nature of stressors may fit with the carer cohort. 

There's also vicarious trauma – the process of change resulting from empathetic engagement with trauma survivors may apply to witnessing your child's suffering.

Tension between parent experiences and parent 'blame'

A key concern regarding diagnoses, identified by the Working Group, was the danger of locating the 'problem' within the parent, rather than the context in which they find themselves. Often trauma responses are an understandable response to an often difficult and traumatising environment (e.g., social withdrawal, hypervigilance). 

The Power Threat Meaning Framework is relevant here, and we agree with Lucy Johnstone in The Psychologist (September 2022) – 'the horrific abuses in many people's lives' cannot be relegated to 'triggers' which people 'would have coped with had they not been biologically "vulnerable"'. Unfortunately, the demonisation of disabled people is still current in our society. Discrimination may add to the traumatic experience, such as ableism in the form of microaggressions or lack of reasonable adjustments. 

'Parent carer blame', evidenced in many social services, can exacerbate the difficulties families are already experiencing. Professionals can play a key role in mitigating this by encouraging the development of a self-compassionate stance, shown to be beneficial for parent carers (Neff & Faso, 2015).

Support options for parent carers

So, what can help parent carers who are experiencing trauma? 

A crucial starting point is for services to ensure they do not traumatise parent carers in the way that support is offered, presented and managed. An understanding, empathic professional in the lives of families can mean the world to families in a sometimes hostile environment.

In terms of self-support, parent carers can often identify potential solutions themselves, and it's important that these positive strengths-based skills are recognised and nurtured. Furthermore, connecting with other parent carers is consistently shown to be supportive – both helping, and being helped by, others in a similar situation. 

Parent carers find positive others (e.g. partners, family, friends) helpful – but when the people around them aren't supportive it can become an additional source of distress (Griffin & Gore, 2023). This is true of professionals too. To be considered positive, other people need to provide sensitive, non-judgemental and compassionate support. Peer support can also develop a sense of belonging. These relationships can be described as providing 'social capital', shown to be a protective factor against mental health problems.

As for professional support, the NICE guidelines on post-traumatic stress disorder refer to Trauma-Focused CBT and Eye Movement and Desensitisation Reprocessing (EMDR) treatments for trauma. While these can be useful for parent carers it may be worth considering the 'complex needs' in the guidelines, including the recommendation to build in extra time to develop trust with the person, and to take into account the safety and stability of the person's personal circumstances (for example their housing situation) and how this might affect engagement with and success of treatment.

Your second author, Jane Steeples, is an NHS Counsellor, and has blogged about using EMDR with parent carers here. These experiences highlight broader issues with professional support for this group, which we will turn to now.  

Trauma-trained professionals

Given the possibility of the greater prevalence of trauma in parent carers, professionals supporting this group should be trauma-trained and work in trauma-informed ways. Sadly, medical professionals can often exacerbate an already traumatic situation. One parent's 'worst part' of their baby's complex birth was the Consultant's words, indicating that their lives would never be the same again. The 'second worst' was being stopped in a corridor on their way home and asked to sign a Do Not Resuscitate form.

Awareness of the context of special education needs and disability 

Parent carers have many demands on them, and the landscape can change rapidly. Short-term support for parent carers, such as IAPT or CBT, can be helpful for some. But we've had reports of parents being discharged part-way through their allotted number of sessions because they missed a session when their child was in hospital due to illness or for major surgery. The parent then felt retraumatised as a 'hopeless case' that no one could help. 

Indeed, Blackman et al.'s (2022) paper states: 'Short-term intervention, such as solution focused cognitive behavioural therapy…was often not appropriate for the enduring anxieties and stress experienced by families. Such approaches are generally manualised, and parents stated that they did not experience their specific difficulties being listen to and addressed' (p.73). Furthermore, the additional pressures such approaches can bring – such as CBT 'homework' – can add to the already overwhelming emotional load the parent is carrying. 

Another key characteristic of the experiences of parent carers is the gradual accumulation of 'small t' traumas with little time to recover and recharge before the next blow occurs. It might be a period of sleep deprivation, or a beloved Personal Assistant leaving. There's no time to process and make sense of the bad thing that just happened – the more pressing need is getting on with another day, when your child might be unwell, dysregulated, or sent home from school. This is important for the EMDR approach, because the memory is stored in its raw form. Hypervigilance is common. There is simply not enough time to physiologically relax from a chronic state of alert before their child returns home. Many parents fight hard for respite but struggle to enjoy it once it arrives. After a few years, this state of prolonged duress often manifests as exhaustion.

Flexibility 

All of this leads us to our final ask for professional support: flexibility. Parent carers we speak with benefit most not from a particular modality or framework; rather, it is the ability of the professional to adapt to the parent/families' needs and have an understanding of their context. 

For example, it helps if therapists have an understanding of the social model of disability and some awareness of the complex systems parents need to negotiate. This helps to move away from pathologising individuals by recognising the discriminations and microaggressions routinely experienced by disabled people and their families, sometimes by the very systems they have come to rely upon. 

But it's also about flexibility around the practicalities. Some appointments may be cancelled at short notice, and without regular childcare support, no parent can fully benefit from interventions. EMDR, for example, can work relatively quickly, but parent carers sometimes need longer than the recommended 8-12 sessions in order to circumvent the regular disruptions in attendance, caused by lack of childcare, school refusals, multiple appointments and regular 'crises'. 

Psychological professionals need to be flexible and willing to roll with these disruptions, whilst working collaboratively with parents to ascertain whether or not 'now' is the right time for their interventions. The first phase may focus on developing resources and stabilisation before directly addressing trauma. Many parents benefit from reconnecting to long forgotten skills, or positive parenting experiences.

Examples of good practice

We are keen to map out services available to support parent carers who are experiencing/have experienced trauma. If your service support this client group and you'd like to be listed on www.affinityhub.uk please contact via the website. 

We'll end by signposting to two organisations doing work in this area.

Respond is a national charity with the mission to reduce the impact of trauma in the lives of autistic people and people with learning disabilities. Respond provides psychotherapy for autistic children and adults and people with learning disabilities who have experienced trauma, abuse and their families. There's also advocacy, training, consultancy, supervision and reflective practice, all within a trauma-informed approach, drawing mainly on psychodynamic and systemic principles. Their training is co-produced with families, and uses four films which stemmed from a collaborative study to find out how the system traumatises families who access services.

LAPIS hosts training on topics related to disability. They've worked with groups and audiences at schools, conferences, psychotherapy training institutions and the workplace. They also offer weekly and bespoke mindful movement classes for anyone affected by disability and health conditions and their family members.

Conclusion

Parent carers are at greater risk of poorer mental health and may also be experiencing trauma.  Ensuring that this is recognised by those supporting parents, and timely and appropriate referrals for support are made, is key. 

• Dr Joanna Griffin is a Counselling Psychologist, parent carer and Assistant Professor at the University of Warwick. She is author of Day by Day: Emotional Wellbeing in Parents of Disabled Children
• Jane Steeples, NHS Parent Counsellor & Specialist Psychotherapist, MBACP (Snr Accred).

References

Blackman, N., Vlachakis, K. & Anne, A. (2022). Brief report on six clinical cases of trauma in families that have children and adults who have a learning disability and/or are autistic, Tizard Learning Disability Review, 27, 2, 69-77.

Bonanno, G.A. (2021). The End of Trauma: How the new science of resilience is changing how we think about PTSD. Hachette Book Group: New York

Clements, L. & Aiello, A.L. (2022) Institutionalising Parent Carer Blame.

Emerson, A. (2019). 'Room of Gloom': Reconceptualising Mothers of Children with Disabilities as Experiencing Trauma. Journal of Loss and Trauma.

Griffin, J. (2021). Day by Day: Emotional Wellbeing in Parents of Disabled Children, UK: Free Association Books.

Griffin, J., & Gore, N. (2023). 'Different things at different times': Wellbeing strategies and processes identified by parents of children who have an intellectual disability or who are autistic, or both. Journal of Applied Research in Intellectual Disabilities, 1– 8. 

Marsh, C. (2003). A Psycho-Physiological comparison of Post-Traumatic and Prolonged Duress Stress Disorders. Behavioural and Cognitive Psychotherapy. 31, 109-112.

Neff, K. D., & Faso, D. J. (2015). Self-compassion and well-being in parents of children with Autism. Mindfulness, 6(4), 938–947. 

Rydzewska, E., Dunn, K., Cooper, S. A., & Kinnear, D. (2021). Mental ill‐health in mothers of people with intellectual disabilities compared with mothers of typically developing people: a systematic review and meta‐analysis. Journal of Intellectual Disability Research, 65(6), 501-534.

Scott, M. J. (2013). Prolonged duress stress disorder. CBT for Common Trauma Responses. SAGE Publications Ltd.

Singer, G. H. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111, 155-169.