A new study has underlined the need for parents of children with epilepsy to be provided with more support to help them cope with the stress their situation can cause.
Led by Boston Children’s Hospital in the US, the research aimed to evaluate the potential benefits of a support intervention for 46 parents of children with epilepsy and other neurological conditions.
The results, which are published in the Journal of Neuroscience Nursing, indicate that the number of people involved in the study was too small to form any conclusions about the effectiveness of the programme, but that it nevertheless uncovered several key findings about the nature of the situation parents face, which could inform future research and approaches to treatment.
Families of children with epilepsy and other neurological conditions often experience feelings of uncertainty and stress, which in some cases can cause parents to doubt their own care-giving skills, leading to anxiety and depression. This, in turn, can have an impact on the child, creating a risk of behavioural problems.
The situation is exacerbated by the fact that, unlike many chronic health issues, neurological conditions are unpredictable and often have no warning signs before acute events. In addition, the significant risk of associated psychological conditions produces an additional burden and can lead to social isolation.
According to the researchers, it is very important that medical professionals are aware of these unique concerns and difficulties, and that they do all they can to provide tailored support.
The study concludes: “Parents of children with neurological conditions often struggle to manage a constant feeling of uncertainty in their daily lives. Nurses possess the knowledge and expertise necessary to identify the psychosocial needs of these parents and provide education and support as needed.
“Future research should focus on designing interventions to meet the needs of these families and develop strategies to help improve the quality of life for both the parent and child living with a neurological condition.”
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