“You don’t even know if you’re aware of what’s happening unless you are in it”: the experiences of parent carers of disabled children as multi-service users

Healthwatch Shropshire funded the Parent and Carer Council to undertake research on the needs of parent carers of disabled children, as multi-service users and to what extent they experienced care integration.

There were two stages of research. Stage 1 was a qualitative study, using thematic analysis; eight mothers of children with disabilities living within Shropshire Local Authority area took part in individual semi-structured interviews. Themes drawn from this data were used to develop a mixed methods questionnaire for Stage 2, which 59 parents completed. 

 Three themes emerged from Stage 1: 

• The Child in Context explored inclusion and exclusion, and the acceptance and normalisation of disability, as well as considering the child within the context of the mother’s care and beyond it; 
• Managing Outcomes explored the parent carers’ co-operation and conflict with service providers. Whilst examples of both good and poor practice were cited, communication and empathy was found at times to be lacking. 
• The Impact on the Parent Carer explored maternal identity and emotional impact, and it was found that parents often viewed themselves as experts on their child, but that the “fight” to obtain services also had a direct and indirect impact on their self-image. 

Quantitative data showed that on average the children currently access 6.9 services each, the range being from 1 (low) to 24 (high), and have accessed on average approximately 10 services in the past, range 1 to 28. Children had a range of areas of disability, and those children who accessed the support of a social worker on average had more areas of disability than those that did not. The most used services were the GP, Royal Shrewsbury Hospital, Paediatrician, Child Development Centre, Health Visitor and Speech and Language Therapist. 

Two themes from Stage 1, Managing Outcomes and the Impact on the Parent Carer were explored further. It was discovered that, despite many positive comments about service providers, many parent carers felt professionals lacked empathy and did not understand their lives; additionally, many parent carers felt that they were not believed by professionals and at times felt patronised. Parent carers made suggestions relating to support, communication and meetings as areas for improvement. Times of transition in the child’s life were highlighted as particularly stressful for child and parent carer. 

One of the more distressing aspects of the accounts is the number of times parents feel that they are not believed by the professionals. They want professionals to “witness” their child’s behaviour; they feel they have to “convince” professionals that they need help and that they are judged. Often they state they are not “listened to”. So parents are not just set aside from other parents and subject to discrimination from the ‘outside’ (neuro-typical) world, but they also feel they are then subjected to judgement within the system that should be there to support them. This feeling of being judged inevitably impacts on their self-image and at times makes them feel belittled, and, at other times, combatant. 

In particular, there are challenges around the transition of young people into the world of adult services, where there is rightly an increased focus on disabled individuals having their own voice; however, it is recognised in legislation that family carers do continue to have an important role. More work needs to be done on developing adult services’ understanding of the role of family carers have in decision making, which is recognised and supported by the Mental Capacity Act, the Children and Families Act and the Care Act. 

Transition is also a time when the co-ordination of services can become even more of a challenge, particularly in relation to health services. The role of the GP can at this point become central to the delivery of co-ordinated care and the maintenance of good health. Developing a positive relationship with GPs from an early age is important for families of children with disabilities so that good health can be maintained into adulthood. While in this research GPs were identified as a service that was most frequently used by the families participating, it is not clear in what capacity, and if that is related to the young person’s care or the care of the family carer.