During the COVID-19 pandemic many parents of disabled children (parent carers) saw their already limited support networks completely disappear. It has exacerbated existing problems and highlighted the impact of cuts on care packages, structural inequalities and the discrimination that disabled people and their families experience.
Even before the pandemic there were increased risks to parent carers’ wellbeing.1 A report by Contact, a charity for families with disabled children, states that social, emotional and financial isolation causes almost three-quarters (72%) of families with disabled children to experience poor mental health.2
Parent carers may feel angry, guilty, helpless, confused and jealous of families who do not face this challenge. The fight for services can take its toll, leading to caregiver burnout, and parents are often fearful of what the future holds for their child.3
There is also a growing literature on the potential positive aspects of parenting a disabled child, given the right circumstances and when appropriate support is in place. These responses include increased meaning or sense of purpose. Parents may report having grown as a person, gaining a new perspective and appreciation for what is really important in life. In this article, I share anonymised experiences of parent carers, with their permission.
Theory versus lived experience
Even though I had worked in the NHS and other settings, including with adults with autism, when my own son received the diagnoses of cerebral palsy, a learning disability and autism, I was completely unprepared. I could not believe how unhelpful certain services were and how poorly they were co-ordinated. Suddenly my eyes were opened to stigma and discrimination. I was also surprised by the lack of acknowledgment of the emotional impact on the family as a whole among the plethora of professionals who appeared in our life.
For the past few years I have been undertaking doctoral research into emotional wellbeing in parent carers, exploring how, despite the additional pressures, parents are managing to support their own wellbeing. I specifically focus on parents of children with a learning and/or developmental disability, but many of the reflections here may have relevance across disabilities.
In my research, I developed seven dimensions that support emotional wellbeing in parent carers, some of which I explore in this article. I use the mnemonic SPECTRA to represent them:
S. Having a Sense of purpose and meaning
P. Connecting to Positive others
E. Feeling Empowered
C. Our relationship with our Child and gaining insight into their perspective
T. Finding, and protecting, ‘Time that is mine’
R. Engaging in ways to Replenish and recalibrate (a Swiss army knife of self-care)
A. Awareness of our emotions and the human condition.
‘If you have a child with additional needs, your mental load is higher than a family who has a typically developing child. It’s just that you worry more about more things and there’s just more load, so then, when other things happen, they have more of an impact. It’s like my cup is already full. You have to allow a little bit of capacity. It’s a bit like you know you are going to get a tax bill, so you really should put some time aside each month, some money aside each month. If you wait ‘til the end and you suddenly get a massive tax bill you won’t be prepared, so it’s like I have to build into my time the possibility of things happening, issues with [my son], so there’s a buffer.’
Emotional wellbeing is a term that is both simple and complex. Most people have some understanding of what it means to them, but there is also a broad literature attempting to define it. One image used to illustrate wellbeing as an ongoing, dynamic process is a see-saw.4 I prefer to use an analogy of weighing scales instead, as this allows for the ‘spare capacity’ identified as helpful by some parent carers interviewed for my research, including the one quoted above.
Parent carers’ emotional responses are complex and can vary day by day. Professionals can help by framing these emotions as an understandable reaction to an unexpected, and sometimes overwhelming, situation. The analogy of grief is commonly used in the academic (and parent) literature on parent carers’ experiences, although it is also critiqued as perpetuating a negative narrative around disability. And rather than a singular ‘event’ to grieve over, there may be many moments throughout a child’s life that disrupt the family unit and require adjustment. Models of loss that encapsulate the complexity and oscillating nature of emotional responses may be of greater relevance to this client group than Kübler-Ross’s five stages of denial, anger, bargaining, depression and acceptance,5 such as the dual process of loss and restoration.6
‘I needed counselling at the very beginning to get me past the shock. And then I think I needed it again, because after you come to terms with what’s happened, there are other feelings that you need to make sense of.’
I think it is important to handle the grief analogy with care, for a number of reasons. Parents and professionals may expect a linear pathway that leads to an endpoint, not realising that the process is often more uncertain and unstable. Events can continue to disrupt the life of the family in an ongoing emotional rollercoaster. We love, and are grateful for, our child. Yet this means that, when terms connected to grief are used, it can layer on guilt, which parent carers commonly describe as detrimental to their wellbeing. We still need to do all the jobs involved in having a disabled child, our parenting and caring roles continue, so there can be little time to reflect on our emotions.
Although some parents do relate to the grieving analogy, it may be a loss of employment, spontaneity or independence that is ‘mourned’, rather than the ‘imagined’ child per se. And, in direct opposition to the grieving analogy, there are many parents who do not identify with grief or loss at all. Professionals need to remain open to the individual’s experience.
Considering the high levels of stress parent carers report, it is unsurprising that different theories of coping are commonly applied to this client group. Distinctions are often made between emotion-focused and problem-focused coping, but this can be overly simplified. In fact, attempts to categorise coping are fraught with difficulties. A review by Skinner and colleagues7 found that no two studies included the same set of categories. They comment that coping is not ‘a specific behaviour that can be unequivocally observed or a particular belief that can be reliably reported. Rather it is an organisational construct used to encompass the myriad actions individuals use to deal with stressful experiences.’
Denial is often seen as a negative coping strategy, but it may be beneficial in some circumstances. In my research, some parents found denial helpful in the early days as it allowed them to continue in their day-to-day activities without becoming overwhelmed. Venting can also be portrayed as an unhelpful emotion-focused coping strategy for escalating negative mood.7 However, several of the parent carers I spoke to found venting a supportive strategy, particularly in safe, non-judgmental spaces such as with other parent carers. This was especially helpful in dealing with situations that could not be changed.
To make sense of lived experience in a way that is functionally useful may require acknowledgment that coping is contextual. In a study on chronic illness,8 the authors comment that ‘avoidance of thinking about the future was not used as a way for participants to hide from their problems, as “avoidant coping” is often depicted in the popular stress/coping literature; rather it was a way of directly and consciously addressing the task of adaptation.’
This connects with findings that psychological flexibility supports emotional wellbeing. Kashdan and Rottenberg9 warn that ‘we should be wary of simple, universal strategies’, and refute the idea that some strategies (such as cognitive reappraisal) are always better than others (such as suppression).
Trauma and growth
Many parent carers will have been through a traumatic experience such as witnessing the fragility of life or our loved ones experiencing invasive medical interventions.
‘I’ve seen my daughter have a lumbar 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 happen to a five year old, you know, that’s brutal.’
Day to day, cumulative, small ‘t’ traumas, such as seeing your child struggle, can also take their toll. Even receiving a diagnosis for your child can be experienced as catastrophic by some parents, although others may find it a relief. As Emerson10 comments: ‘Professionals seeking to support disabled children must recognise the potential of diagnosis or health crises to be traumatic for the parents, and this must shape the service that they deliver.’
Trauma-informed ways of working can lessen the negative impact of services. There are two main requisites:
- the need for physical, psychological and emotional safety through trustworthiness and transparency
- opportunities to build a sense of control and empowerment through choice, collaboration and equality.
Where there is trauma there may also, over time, be the potential for growth,11 although that is never guaranteed. Earlier pain is not removed; rather, it morphs into something more manageable or even transformative.
My research identified a process reported by parent carers that I have named ‘reorienting’. The process of reframing, when our mental model of the world becomes challenged and does not work in a new situation, involves deconstructing, rebuilding or adapting in some way. This was relevant to parents in my research, who described a common phenomenon of changing, and changed, values, thoughts, emotions and behaviours, in line with a new life path, wider awareness of the world and their family’s place in it. They had to leave behind fixed, unhelpful views in order to respond, in a balanced and flexible way, to the new environment.
The term ‘reorienting’, used by a parent carer, integrates the physical sense of being in another world and the cognitive shifts experienced, as well as describing the depth and all-encompassing nature of their journey. Parents report changes in life perspective as well as in how they parent their child.
‘I don’t even try and shoot for normal anymore. I don’t think I ever could even if I wanted to, but I used to try and aim for it and then fall short of it, and that would be a bad mental loop, whereas [now] I’m much more accepting.’
The published literature touches on this phenomenon, but there were differences of opinion as to whether participants’ experience of change was a cognitive shift of perspective or deeply transformative (and everything in between). Reorienting provides a way of representing the full spectrum of ways of understanding the process. It is also relational – the process is supported by connection with positive others, both direct and indirect, including disability and neurodiversity activism, advocacy and representation.
‘It’s just so disorientating when you have a disabled child that you can never find your footing, so you’ve kind of got to get this collective balance.’
One parent carer described how the reorienting process had occurred before the birth of her child. As a strong advocate for the social model of disability (which highlights that, while an impairment can be a challenge, it is the environment that is disabling, not the diagnosis itself), she said: ‘I didn’t see her birth and her disability as a disaster.’
These findings suggest that, if society were more inclusive, accessible and positive towards disability, there would be less of a need for the reorienting process.
The role of counselling
As the practical and emotional aspects of wellbeing are often deeply intertwined for parent carers, having a counsellor who understands the context is important.
‘[The general counselling] was quite helpful, but then in the same breath, it wasn’t, because the counsellor didn’t clearly understand what it’s like to have a child with a disability and you can talk about it until you’re blue in the face but it doesn’t change it, it’s still the situation, it’s still there… and support is less and less.’
Many parents welcome advice or strategies alongside the counselling role that may require a certain level of expertise – for example, around behavioural strategies or an understanding of sensory overload. Flexibility about frequency of attendance is also crucial – some parents were discharged part-way through their allotted number of sessions with their local IAPT service because they missed a session when their child was in hospital. It can sometimes be useful to refer parents on to other services to get the appropriate advice.
Because of the potential strain on the relationship between the parents, couples counselling can be useful at certain times. This can include discussions about each parent’s own upbringing and parenting style, to raise awareness of any tensions between them.
A final finding of my research was a strong desire among parents to help others, particularly other parent carers. In the process of embracing their own child’s difference, parents can develop greater tolerance and empathy in general. They also gain new skills and expertise, although they are rarely asked to collaborate with services, organisations or research more widely. This can be disempowering and negatively affect their wellbeing.
‘Until teams do co-production properly, meaningfully, not just “let’s ask a few parents what they think”, but actually employ parents as consultants within a service to advise, then it will never change.’
Working with parent carers can ensure services are family centred and focus on outcomes that are meaningful to them, which, in turn, supports the wellbeing of the whole family.
This desire among parent carers to help others may be directed towards helping themselves. Counsellors can remind carers of the need to take care of their own emotional wellbeing day to day, not only in times of crisis.
The therapeutic support I received when my son was younger was helpful as it was offered flexibly over a longer period, rather than just at the point of diagnosis. At times, though, it felt like the emotional support existed in a silo. It would have been preferable if all of the professionals who were involved in our life had some basic empathy skills. There appears to be an urgent need, more widely, for training in active listening skills, emotional literacy, sensitivity and the confidence to have difficult conversations. If more appropriate discussions happened in the initial stages of contact with families, it might mean that referral on to specialist emotional support services would not always be necessary.
My own journey has reflected many of the findings in the research, including a need to make meaning of my experience and the recognition that, by helping others, I have also supported my own wellbeing. A key factor that supports parent carers is knowing that they are not alone.
Next in this issue
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2. Forgotten families: the impact of isolation on families with disabled children across the UK. London: Contact; 2011. bit.ly/3iUvvuE
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