25th June 2020 • Emma Cooper
Together for Short Lives has published the results of a new study, revealing that most families caring for a child with a life-limiting condition have felt even more isolated and alone during the coronavirus pandemic.
The SHARE study, in collaboration with Martin House Research Centre and the University of Southampton, was completed by parents, with the majority (77%) being completed by mothers. Around 82% of those families who took part in the study were also being supported by their local children’s hospice.
The study revealed:
- 98% are worried about the virus, and 98% are worried about their child’s health if they get the virus.
- 93% have felt isolated during the pandemic, and 57% said isolation has brought up negative memories.
- 89% think their child should be isolated from everyone except immediate family during the pandemic and some families have not left the house at all during the outbreak.
- 95% are fearful that their child will catch the virus from their parent.
- 93% fear their child’s treatment will be cancelled or delayed and this has been the experience for some families who have lost vital therapies for their child and had planned procedures cancelled.
- 59% had struggled to get nursing support during the pandemic, and 66% struggling with in-home care. 86% had experienced difficulties accessing therapies like physio for their child.
- 95% are worried about nurses or carers coming into their own home and are having to make difficult decisions that involve weighing up the risks and benefits of allowing people into the home.
One family taking part in the study said:
‘We are exhausted. My partner and I are doing a job that usually takes a whole team of people. Our relationship with each other has deteriorated. My child is bored, upset and confused. He is in pain as his surgery has been delayed and he cannot have his usual therapy. His learning has stopped and he has regressed without the 1:1 he usually has. My other children have had to stay indoors due to shielding my life limited child. They are generally coping well but have some emotionally challenging days.’
Calling for support
In response to their findings, Together for Short Lives has called on the government to continue to provide support for isolated families of seriously ill children, who will understandably be anxious about ending shielding. As it currently stands, the government will be advising the following for people who are shielding from 6th July:
- you may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing.
- you no longer need to observe social distancing with other members of your household.
- in line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance.
Andy Fletcher, CEO for Together for Short Lives said,
‘Coronavirus has changed all of our lives, and families caring for a seriously ill child feel more alone than ever.’
‘Lockdown has been so tough, and many families will understandably be nervous about ending shielding. The SHARE study mirrors Together for Short Lives’ experience of what families have told us via our helpline and family support services during the pandemic.’
‘We are deeply worried about the long-term impact on children and families’ wellbeing and mental health. It’s vital that these vulnerable children and families get all the support they need, from government, the NHS and other vital services. In particular, we must do all we can to make sure children’s hospices can continue to provide lifeline care.’
The SHARE study is still open to families caring for seriously ill children until 30th June 2020 and the parent survey can be accessed here.