‘This is your job but this is our life.’ – Parent Carer
Paper by Joanna Griffin, Counselling Psychologist, Dr Emma Johnston, Clinical Psychologist, Jane Steeples, Psychotherapeutic Counsellor
Parents of children who have special education needs or disabilities (SEND) or additional learning needs (ALN) parent carers commonly report both a positive and negative impact on their own emotional wellbeing. This guidance is for professionals working in the Health, Education and Social Care fields and focuses on how you can support emotional wellbeing in parent carers as part of your role as well as acknowledging that parental wellbeing has a key influence on child wellbeing. An important aspect of support is gaining a fuller understanding of the family’s perspective and context as well as recognising the complex emotions they may be experiencing.
Undoubtedly being a parent carer can bring additional stressors into the life of the family. Some of these are due to the child’s impairment itself but the majority are in relation to the context in which families suddenly find themselves. Families will generally have more services and professionals in their lives with the aim of bringing extra support and expertise. At times, though, this also has the potential to create more conflict, invasion of privacy, feelings of vulnerability and judgement.
‘the thing about parents of disabled children is that we can't hide our vulnerability, we're so vulnerable, because professionals are constantly wanting to know what our child had for breakfast and wanting to know how they are going to the toilet’ – Parent Carer
The charity Contact, for families with disabled children, say that in the UK there are around one 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’. The practical challenges and stress of caring for a disabled child sometimes cause difficulties in the network around the parent, including tensions with friends or within families.
Along with a potentially negative impact on relationships and practical issues, such as finances or housing, families can also experience stigma and discrimination in society. Further, parents often report poorer physical, as well as mental, health. The practical and emotional struggles for families with a disabled child are often deeply intertwined, which can lead to a pile-up of demands that would test the personal resources of any individual. Despite the emotional impact on the parent the focus for many professionals is solely on the child.
Although many parents have positive relationships with professionals, some families report that the way members of the public, professionals and services interact with them can be damaging. This includes experiences of:
- Being undervalued and excluded from discussions and activities central to their child’s life
- Feeling judged, criticised, mistrusted or patronised
- Being perceived as difficult or challenging
Alternatively, some families have had an absence of support due to a variety of reasons or errors which then results in crisis point being reached.
Read the paper