Parents and carers of disabled children can be at risk of poorer mental health due to the demands and stresses of their role. These run from fighting for services and a lack of sleep.
What is not always recognised is that some parents may also be experiencing trauma.
While there is no single definition of trauma, there are some common elements.
A parent may appear tearful or somewhat detached and it may not be obvious that this is a survival response
The government’s definition of trauma-informed practice draws on the internationally recognised definition developed by the US-based Substance Abuse and Mental Health Services Administration: “Trauma results from an event, series of events, or set of circumstances that is experienced by an individual as harmful or life threatening.
“While unique to the individual, generally the experience of trauma can cause lasting adverse effects, limiting the ability to function and achieve mental, physical, social, emotional or spiritual wellbeing.”
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 events.
What causes trauma can vary between people.
Cumulative trauma can have a negative impact on day-to-day lives and how people feel about themselves. However, this is not always recognised, and parent carers do not always receive appropriate referrals for support.
Trauma might present in different ways. Signs include:
- Hyperarousal: stress, anxiety and feeling on edge
- Flashbacks: reliving aspects of the traumatic experience and feeling like it is happening in the present moment
- Dissociation: feeling numb, spaced out or detached from things going on around you
- Sleep problems: these include insomnia resulting from not being able to switch off or nightmares that wake a person up.
Experiences that can be traumatic for parent carers include:
- Medical history: being asked to repeat a traumatic medical history at each new clinical 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 this 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, a hard-fought-for service requires great effort to maintain on the part of an already exhausted parent. This can lead to despair, hopelessness and a sense of giving up
- Abuse: parent carers whose son or daughter has been abused in an institution and who were not offered professional help or an opportunity to work with support staff regarding care and support
- Bonding and detachment: some parents struggle to bond with a premature baby if the newborn needs to be in an incubator or hospitalised for long periods. Some feel emotionally and practically detached and ashamed that medical professionals seem to have a closer bond.
Building on their personal and professional experience, a number of parent carer professionals recently established a parent carer trauma working group to consider these issues further.
The group, in which I am involved, brings together professionals, many of whom are also parent carers with lived experience of trauma. We have considerable experience in discussing what parent carer trauma looks like and how we can best support those experiencing it.
The group published a discussion paper (available on affinityhub.uk) this year on trauma and parents of children with special educational needs and disabilities for professionals and parent carers.
Our network believes parent carer trauma is often unrecognised by both parents and professionals and it may be more nuanced in its presentation than realised.
This article was originally published by the WellChild charity
Dr Joanna Griffin is a parent carer, psychologist and Affinity Hub founder
