A new study from the Martin House Research Centre, Together for Short Lives, and the University of Southampton reveals that most families caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the Coronavirus pandemic, with some parents describing that they feel like a ‘forgotten group’.

“COVID-19 has made an already difficult, isolating situation considerably harder.”

In response, UK children’s palliative care charity, Together for Short Lives has called on the government to urgently provide additional guidance for isolated families of seriously ill children who need to continue shielding and to begin to restart urgent local education, health and care services. The charity also urges the public during this year’s Children’s Hospice Week to support their local children’s hospice, which can help families to feel less isolated through the vital care they offer.

Feelings of isolation were heightened for several reasons, including the need to shield their child at home, worries about carers coming into their home and the loss of some of their formal and informal support.

‘We have been abiding by the shielding letter and have not left our home not even for a walk for three months now. As you can imagine this has been incredibly difficult for us.’

Early findings from an ongoing piece of research, called the SHARE study, into the impact of the virus on families caring for seriously ill children, are released in Children’s Hospice Week (22-28 June 2020), a campaign led by UK charity Together for Short Lives. Children’s Hospice Week is a UK campaign to raise awareness of the needs of seriously ill children and the lifeline children’s hospices that they rely on.

The SHARE study is a collaboration between The Martin House Research Centre, Together for Short Lives, and the University of Southampton. The survey was completed by parents, with the majority (77%) completed by mothers. Around 82% of families taking part are supported by their local children’s hospice. So far, 44 parents have taken part.

For families caring for seriously ill children, feelings of isolation and loneliness are already very common, but the coronavirus pandemic has intensified this. Many parents, exhausted after months of providing 24/7 care for their child at home, will carry on shielding their child and family long after social distancing ends. The SHARE study reveals negative impacts on the wellbeing of the seriously ill child, the parent and other family members. Parents reporting getting few breaks from caring and no ability to engage in activities that have previously helped them to cope, such as going out for a walk, to the shops, or seeing friends.

‘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 physiotherapy, hydrotherapy and rebound 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.’

Although some parents reported positive impacts such as spending more time together as a family and life slowing down, most parents reported feeling physically and emotionally exhausted. And parents’ worries and fears about the virus combined with uncertainty about what will happen next as they continue to shield their child at home, are also impacting on their wellbeing.

‘We have always known that even the common cold could cause our child a hospital stay and ventilation. This virus has heightened our fear to another level altogether, despite the government advice that it does not appear to affect many children.’

Some of the SHARE study’s key findings are:

• 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.

Families caring for seriously ill children with complex conditions and often requiring 24/7 care need lifeline support and care from an array of health and social care agencies. And, as they will carry on shielding long after lockdown has lifted, it’s vital that they get the right support. In the study, we asked families what additional support they need. 50 per cent said they need more support from community nursing or health visitors, 50 per cent from their GP, 66 per cent from their child’s hospital or specialist and 61 per cent needed more support from their children’s hospice. Importantly, parents told us that guidance about shielding and information that is specific to their child is needed to help them make decisions about what to do next.

‘It feels like the shielded are the forgotten group. The rest of the world is going back to normal, but we won’t be for some time.’

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 carry on shielding long after social distancing ends. 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 the 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 pandemic has hit hospices hard financially and that’s why our Children’s Hospice Week campaign is so important this year – it is vital that we pull together to protect the lifeline care that children’s hospices provide for vulnerable families today, tomorrow and long into the future.”

The UK Government also has an important role to play in helping families of seriously ill children to feel less isolated. Together for Short Lives, in partnership with a coalition of other charities are calling on ministers to:

• Deliver additional guidance on government plans for those required to shield for longer
• Clearly setting out the education, health and social care support that families of seriously ill children are entitled to during the pandemic
• Working to restart the education, health and social care services that vulnerable children and families rely on as quickly and as safely as possible.

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: https://www.isurvey.soton.ac.uk/37377

The Martin House Research Centre, Together for Short Lives, and the University of Southampton will publish the full findings later in the year.