How the COVID-19 pandemic has compounded parents’ feelings of uncertainty and anxiety

Isolation and loneliness are all too familiar feelings when caring for a child with a life-threatening or terminal illness, but the COVID-19 pandemic has further compounded parents’ feelings of uncertainty and anxiety. Fear of their child or themselves contracting the virus, changes and delays to appointments and treatment, and greater social isolation than ever, have combined to pile yet more pressure on many parents.

Hearing that your child has a life-threatening or terminal illness is one of the most stressful and traumatic experiences that a parent can have. Many will experience feelings of anxiety, distress, depression or even trauma. We highlighted this in our January 2020 report, Parents Matter: The impact on parents’ mental health when a child has a life-threatening illness. But at that time, no one could have predicted the impact of COVID-19 and what it would mean for these parents.

Our new briefing, Feeling Forgotten: Parental mental health concerns exacerbated by the COVID-19 pandemic whilst caring for a seriously ill child, sets out the findings from two surveys with families receiving our support during this time. It presents parents’ experiences, and explains how we have swiftly adapted our service delivery in an ever-changing situation. Supporting parents to manage their emotions and the stress of their situation will be central to Rainbow Trust’s continued response.

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