Supporting parent carers

We imagine our children before they are born, yet nothing fully prepares us for the realities of parenthood. Any parent takes time to adapt, and the path may be filled with greater obstacles if our child is disabled. When my son was born I thought that being a psychologist would help me understand not only his complex needs but also the system in which we suddenly became embroiled. Unfortunately, I'm not sure it was necessarily the case. It may have even added to the pressure I placed on myself to manage the many conflicting demands.   

I was also surprised at how, despite the plethora of professionals who appeared in our life, there was little acknowledgement of the emotional impact on the family as a whole. This is echoed by other parents I've spoken to and I'm unsure whether this is due to a lack of awareness, fear of raising a potentially difficult topic or something else.

I'm now researching emotional wellbeing in parent carers, bringing together my personal and professional experience. The charity Contact, for families with disabled children, say that in the UK there are around 1 million disabled children under the age of 16, which equates to one child in 20. They suggest that '72 per cent of families with disabled children experience mental ill health such as anxiety, depression or breakdown due to isolation'.  

My research focuses on parents of children with a learning and/or developmental disability, but many of the reflections below may have relevance across disabilities. By sharing an overview of the spectrum of parental emotional responses, I hope to raise awareness of the needs of parent carers. I also consider how the socio-political landscape affects parent wellbeing, and finish by illustrating different types of support. 

Charmolypi [Greek] – happiness and sadness intermingled

Parent carers' emotional responses are complex, varied, and – like their child – unique. Yet there are common experiences. Many identify a negative impact on their wellbeing (Totsika et al., 2011) including psychological distress (Keenan et al., 2016), stress, depression and chronic sorrow (Roos, 2002). They may be in denial (which might help get through the early years, but can become problematic), feel angry, helpless, confused, jealous of non-disabled families and commonly fearful of what the future holds for their child (Griffin, 2019). Parents can feel guilt over their struggle to adhere to a daily therapy programme, their use of respite services, and the impact on the wider family. 'Genetic guilt' can also be a factor for some. 

The emotional process is often compared to grieving, and many parents will experience the famous five stages – denial, anger, bargaining, depression and acceptance. Yet there are subtle and tangible differences. Love and gratitude are to the fore, so our grief, where present, lingers like a shadow in the background. Caught up in the busyness of caring there is little time to acknowledge difficult emotions, so a grief-that-cannot-be-named may be processed (or not) in private. 

Another contrast is that rather than a singular 'event' there may be many throughout a child's life that disrupt the family unit and require adjustment; what Paul Langridge has called 'little deaths'. However, it may be a loss of control, spontaneity or independence that is mourned rather than the 'imagined' child per se. In my experience having to leave my job (and, as it felt at the time, my profession) in the NHS because of the challenges co-ordinating appointments (ironically within the NHS), my son's therapy demands and his vulnerability to recurrent illnesses added to a sense of life being irreparably altered. And in direct opposition to the grieving analogy are the many parents who do not identify with grief or loss. This is powerfully expressed in the 'Wouldn't change a thing' campaign to challenge negative perceptions of Down Syndrome.  

With this in mind, professionals need to avoid making assumptions about parental responses to their child's diagnosis and remain open to the individual's experience. Parents may report having grown as a person, learning to put life into perspective and appreciate what is really important with a new sense of purpose. Developing greater expertise and awareness, becoming more solution focused and confident in their ability to not only support their child, but also help others in a similar situation. 

'I've found the key to him [his son]' – Parent Carer Father

Relationships (new and old) may gain greater significance, in particular with those who truly understand the new circumstances families find themselves in. Parents experience enormous pride and joy in the child's achievements, however comparatively small, delayed or different they may seem to others. We learn to see the absurdities of certain social norms and embrace diversity. Some parents even recognise they share the same traits or diagnoses as their child, thereby developing greater self-understanding (and often greater understanding of their child).

[I gained] 'the confidence as a parent to pick and choose my battles so instead of choosing battles that society was telling me were really important, I could focus more on his emotional need… Rather than making him like a parrot to say hello when he meets people.' – Parent Carer Mother

Notions of positive or negative responses may be too simplistic as both can happen simultaneously: adaptation is not necessarily the 'absence of stress or other negative feelings' (Hastings & Taunt, 2002). Emotional responses can vary day-to-day and professionals can help by framing these dialectical and oscillating emotions as an understandable reaction to an unexpected situation. 

Trauma and growth

Many parents will have experienced trauma: seeing their child go through invasive medical interventions, a difficult birth, behaviours that challenge or even day-to-day cumulative traumas and may show evidence of post-traumatic stress. Emerson (2019) says that 'UK services are not designed to support traumatized parents, and health practice may serve to compound distress.' Every experience of contact is potentially retraumatising and the quality of the interaction, requiring understanding and sensitivity, of utmost importance.

Furthermore, carers often report poorer physical, as well as mental, health (https://bringingustogether.org.uk/parent-carer-health-the-impact-of-the-caring-role/; Cantwell et al., 2014). 

But where there is trauma there may also, over time, be the potential for growth (Cadell et al., 2014). This is rarely linear or smooth; the post-traumatic growth model suggests that earlier pain is not removed, it just morphs into something more manageable or even transformative.  Yet this growth may remain contingent on issues beyond our control, such as a failed short breaks service that was our only means of respite, unmet needs in school or medical issues:  

'each time my son has a seizure a little part of me dies' – Parent Carer Mother

Support

Amanda Batten, Chief Executive of Contact, comments: 'The feeling of being alone can start right from diagnosis, when families are often left to come to terms with it on their own. And then there's less chance of social interaction at baby groups, or at the school gates. We know that families are stronger when they have a network of support from other families in a similar situation.' Indeed, Scope state that 41 per cent of parents of disabled children aged 0-5 weren't offered any emotional support during their child's diagnosis. They have established a new service called 'Navigate' to support parents at or around the time their child receives a diagnosis.

So what form can such support take?

Counselling

Counselling can provide space for parents to make sense of their response, which may involve shock but can also be a relief if they've long suspected a diagnosis. Several of the parents I interviewed felt that being able to access ad-hoc counselling over a longer period of time would be useful as the child and their needs inevitably develop and change. Such services are sporadic, however, and parents end up self-funding through independent practitioners or the very few charities or non-profit organisations that offer this specialist support [see Box 1 below on Lapis].

ACT and mindfulness

Acceptance and Commitment Therapy (ACT) and mindfulness (e.g. Reid et al., 2016) can provide strategies that not only benefit parent carer wellbeing but also positively impact on those around them, including their child. Offering a new perspective alongside greater self-compassion can empower parents to build on their existing strengths. [see Box 2 below for more information on ACT workshops]

Context and Community

Greater awareness of our internal responses can function alongside another dominant part of parent carers' lives – the need to fight for services and support, both locally and nationally.

'Only 4% of parent carers feel they get the right support to safely care for their disabled child' – Disabled Children's Partnership

There has been significant parent-led activism in recent months, including taking the government to court over cuts to Special Educational Needs and Disability (SEND) budgets and the Disabled Children's Partnership's #Giveitback campaign. Families with a disabled child have been disproportionately affected by austerity and poverty negatively impacts all areas of life. It is pertinent that the British Psychological Society has made poverty its policy priority for 2020.  

Wellbeing entails societal as well as personal elements. Scope reports that 87 per cent of parent carers have felt judged by members of the public. Inclusion and accessibility are vital and may help explain why other special needs parents or groups become so valuable to parent carers. They help to positively re-frame their experience as well as reduce isolation.

Many parents reflect on the importance of creating something useful out of their experiences, particularly helping other parent carers and becoming disability advocates. This resonates with the values-led focus of ACT and aspects of post-traumatic growth that we are 'meaning-making beings'. Worryingly, though, if all our interaction with the world is through the lens of a 'warrior parent', it may contribute to caregiver burnout.  

Social media can play an important role in the lives of parent carers. Connecting with others 'in the same boat' offers the chance to troubleshoot problems as well as providing general camaraderie. However, it can also expose parents to some emotive and disparate viewpoints; even shaming parents if they voice their struggles. Parents need a safe, non-judgemental space to process their emotional responses before being able to engage with these different perspectives. Professionals can educate themselves on where to signpost parents and what they might encounter. To advise parents to stay away from social media is unrealistic. Simple tips like turning off notifications on their phone can help parents cope with a constant stream of messages and avoid feeling overwhelmed, particularly at times when they feel most vulnerable. 

Society – we are in this together

The practical and emotional struggles for families with a disabled child can often be deeply intertwined. They are more at risk of financial and practical difficulties (i.e. housing), relationship breakdown and unemployment. Families may also experience associate stigma and discrimination, all of which can lead to a pile-up of demands that would test the personal resources of any individual. 

Multi-disciplinary support in the community (i.e. schools or other services) can combine emotional and practical support. [see Box 3 on Cardiff and the Vale Health Board and Box 4 on Special School–based family support].For example, setting up parent groups and providing advice on issues such as benefits or Education Health and Care Plans. When my son's primary special school took control of his transition to secondary school – weekly visits to the new school during the summer term, full handover to teachers, visual timetables and social stories – I felt immense relief, as though we were being 'held' by the system. It helped my son, the school and ultimately my own emotional wellbeing.

This shared responsibility may help assuage Parent Carers' fears for the future:

[I am] 'hoping against all hope (and not feeling much hope really at all for it), that by the time I do fall down dead, that he [son] will be somewhere where he's happy, content and there's enough people and enough commitment to his future care and the future care of others that he will have a lovely rest of life and it won't be any stress to him.' - Parent Carer Father

The support parents require, in parallel to the emotions they experience, can be complex. Part of the process, as I found out myself, is acknowledgment that an array of different emotional responses is understandable as well as having the chance to safely share these experiences. Hopefully greater awareness of the breadth and depth of the impact of having a disabled child can help services be flexible and responsive to their needs. 

Joanna Griffin is a Counselling Psychologist, Parent Carer and Founder of www.affinityhub.uk which signposts to emotional support for parents of disabled children. She is a Doctoral Candidate at Metanoia Institute/Middlesex University researching emotional wellbeing in parent carers. 

'In collaboration with Lapis (see box 1) we are organising a conference on Parent Carer Wellbeing in Autumn 2020 as well as a CPD event for professionals supporting this group of clients. To find out more please email [email protected].'

References

Cadell, S. et al. (2014). Posttraumatic Growth in Parents Caring for a Child with a Life-Limiting Illness: A Structural Equation Model, American Journal of Orthopsychiatry, 84(2), 123-133.

Cantwell, J., Muldoon, O.T. & Gallagher, S. (2014). Social support and mastery influence the association between stress and poor physical health in parents caring for children with developmental disabilities, Research in Developmental Disabilities, 35 (2014), 2215-2223.

Emerson, A. (2019). 'Room of Gloom': Reconceptualising Mothers of Children with Disabilities as Experiencing Trauma. Journal of Loss and Trauma, DOI: 10.1080/15325024.2019.1658946

Griffin, J. (2019). A report into the Emotional impact of parenting a disabled child. March 2019, Researchgate, DOI: 10.13140/RG.2.2.15565.08169 (also on www.affinityhub.uk)

Hastings, R.P. & Taunt, H.M. (2002). Positive perceptions in Families of Children with Developmental Disabilities, American Journal on Mental Retardation, 107(2), 119.

Keenan, B.M., Newman, L.K., Gray, K.M. & Rinehard, N.J. (2016). Parents of Children with ASD Experience More Psychological Distress, Parenting Stress and Attachment-Related Anxiety, Journal of Autism and Developmental Disorder, (46), 9.

Langridge, P. (2002). Reduction of chronic sorrow: a health promotion role for children's community nurses? Journal of Child Health Care, Vol 6(3) 157-170.

Reid, C., Gill, F., Gore, N. & Brady, S. (2016). New ways of seeing and being: Evaluating an acceptance and mindfulness group for parents of young people with intellectual disabilities who display challenging behaviour, Journal of Intellectual Disabilities, 20(1), 5-17.

Roos, S. (2002). Chronic Sorrow: A Living Loss, New York: Routledge.

Totsika, V., Hastings, R.P., Emerson, E. et al. (2011). A population-based investigation of behavioural and emotional problems and maternal mental health: associations with autism spectrum disorder and intellectual disability, The Journal of Child Psychology and Psychiatry, 52:1 (2011), pp.91-99.

Box 1: Non-profit organisation – Lapis

London Accessible Psychotherapy Independent Service (LAPIS) is a non-profit organisation offering psychotherapy services to anyone affected by disability, their carers and family, including individual counselling and psychotherapy, mindfulness classes and groupwork. 

Therapy is always open-ended and low-cost, where the client decides how much to pay so no-one is turned away due to issues of affordability. 

The training and experience of our staff in a wide range of disabilities – physical disabilities, health conditions, learning disabilities and autism – have led to a unique service. LAPIS offers placements for trainee counselling psychologists and psychotherapists, welcoming those who are themselves affected by disability.

www.theLAPIS.co.uk

Dr Lisa Greenspan, Counselling Psychologist

Box 2: Acceptance and Commitment Therapy Workshops

Carers of children and young people whose behaviour is deemed as challenging experience high levels of stress. In an attempt to promote greater resilience in the carers they are working with, and to ensure the integrity of interventions provided within a CAMHS LD service, two clinicians run workshops for carers based on the principles of Acceptance and Commitment Therapy (ACT) developed by Dr Nick Gore at the Tizard Centre, University of Kent. 

ACT places the emphasis on willingness and acceptance and promotes greater psychological flexibility. It also helps people identify their core values and make choices that help them build the life they want to live. These principles can be very helpful when faced with challenging situations that have lasting effect and no immediate solution. 

During the workshops, clinicians share a range of tools with the participants to help them learn a new way of responding to difficult situations, clarify their values and make choices that help them move towards them. This has implications for the development of an intervention that promotes carers' well-being and may also offer an important contribution to the wider implementation of Positive Behaviour Support (PBS) framework with caregivers. 

Gina Skourti, Behaviour Analyst
Dr Lisa Brosh, Clinical Psychologist

Box 3: Cardiff & The Vale Health Board, Early Years Service

The service was originally set up to offer the Portage intervention to children (0-3). Through this intervention, the child advisors developed relationships with families over a significant period of time. This enabled parents to open up about the complex emotions they were experiencing. However, over time, it was acknowledged that parents required a space for themselves with a trained professional. There was also a need to counteract a highly medicalised setting where parents and their children experienced a lack of control and a sense of being 'done to' rather than 'being with'. These gaps and needs were filtered through to the head of service and a successful bid for funding to the Individual Care Fund (ICF) was made for a full-time parent counsellor embedded within the team. 

'The referral pathway is still being developed however we are keen for parents and carers to be able to feel in control through self-referral. We are trying to have a presence at education 'stay and plays' so parents can refer themselves in a more organic and informal way as well as introducing counselling as an option at initial contact with the service to offer a more holistic approach.'

Dr Emma Johnston – Service Lead, Clinical Psychologist

Alice Horton – Psychological Therapist, Trainee Counselling Psychologist

Box 4: Special school-based counsellor

Special needs schools benefit from a bespoke family support provision. By recognising the value in offering therapeutic input for parents and siblings who have a disabled child in their family, the school community is well placed to support resilience and emotional well-being. This in turn promotes the well-being of their child. 

One example of this is our special needs primary school, where provision has grown throughout the years in response to the families' needs. The team currently includes; two Arts Therapists (Drama and Music), two Child Psychotherapists, two family support workers, an early intervention co-ordinator and a school nurse. 

Throughout term time, families are invited to attend weekly family arts therapy sessions, weekly / fortnightly individual psychotherapy sessions for parents, half termly group psychotherapy sessions for parents, regular parent coffee mornings and siblings drama groups in the school holidays. Ad hoc support is offered when families need support to access external services or interventions to support behaviour that challenges within the home.

The sessions / provisions are funded by the school. Parents can self-refer or sessions are recommended to parents when concerns have been highlighted in meetings (e.g. annual reviews / multidisciplinary team meetings / family support meetings).

Jessica Ellinor – Head of Therapies and Family Support Service, Drama and Movement Therapist