CRO No. 297192 | Charity No. 6632
© February 2020
Our summary findings are included in the summary report here.
Children in Hospital Ireland first carried out research into the non-medical costs of having a child in hospital in 2004. In 2019, we decided to carry this out again to re-fresh our findings and also to add a qualitative element to the study. In 2004, the survey was paper based and relied on parents completing it while they were in hospital with their child. In 2019 most of the surveys were completed on-line by parents of children who had been in hospital in the previous 18 months. This survey also interviewed social workers, NGOs working with patients' families and also parents themselves. This gave us some very rich and insightful personal stories and perspectives on the issues.
The strongest call for change in the area of supporting parents and families, comes from the EACH Charter, Article 3(1) and 3(2) which state that 'accommodation should be offered to all parents and they should be helped and encouraged to stay' and that 'parents should not need to incur additional costs or suffer loss of income'. The charter gives recognition not only to the additional costs involved when your child is in hospital but also the loss of income which at least one parent will often experience due to having to decrease or give up work entirely.
Our study looked at the expenses which were incurred such as parking, accommodation, food and travel and also at the sometimes hidden costs of childcare for other children at home, expenses related to items such as additional laundry, gifts for family caring for other children and day trips and treats for the sick child and for siblings. We also asked parents about any loss of income as a result of having a child in hospital and also how they had managed to cover the additional costs. Finally, we also asked parents about the psycho social impact of having a sick child and whether they had accessed medical or counselling support themselves as a result.
Our summary findings are included in the summary report here. We are now working on developing an advocacy strategy to promote our findings to policy makers and to lobby for changes to be made.
We hope that other EACH member organisations might also consider adding to this knowledge and we would encourage other countries to share their stories with us.
The EACH Charter provides us with a strong basis for advocating for children, young people and their families and we intend to use this to help support our work.
71% worried ‘fairly often’ or ‘very often’ about their finances
58% said they had seen a ‘strong negative impact ‘or an ‘extreme negative impact’ on their financial well-being
Being so far from Dublin and on my own, means that
I don’t see my [other] kids for weeks
It can cost parents €108 per day in non-medical costs
Higher levels of impact recorded in those in lower-income brackets
The €60 each per week it would cost [for counselling] is not realistic for us at this time
89% of families travelled by private car to hospital. Most cited the reason for this as the difficulty of bringing a sick child on public transport. For some, the journey to hospital involved three hours travelling each way.
While not the biggest financial concern, it is one of the biggest sources of frustration.
Discrepancies in charges between different hospitals – varying concessions which some parents may not even know about or know how to access.
94% of parents have stayed overnight.
Charges for hospital-provided parents’ accommodation vary from €18 to €30 per night.
Charges for accommodation provided by voluntary groups range from €0 to €10 per night. However, there is only a limited supply of such accommodation.
10% of families had to stay at a hotel.
Only one parent can stay in a child’s room in a hospital, the other parent would have to find accommodation
Parents cannot stay in room if child is in intensive care, which means they must find accommodation elsewhere.
An average of €47 spent by a parent for one day in hospital.
Hospital canteens do not have flexible opening hours.
Parents of children in isolation cannot use shared kitchen areas – increasing their costs.
81% of respondents had other children at home.
28% of parents relied on paid childminding/crèche services for children at home.
25% relied on their partner to mind other children (which meant that this parent could not be readily available to support the parent staying with the child the hospital).
34% relied on other family members to mind other children.
Additional costs for other children of, on average, €41 per week as a result of having a child in hospital (outings and activities).
21% of parents had sought mental health support as a result of having a child in hospital.
24% said that they could not afford to access counselling or similar form
78% had lost income as a result of having a child in hospital.
19% said they had given up work to look after their child.
11% had reduced their hours.
13% were taking a temporary leave of absence.
16% had used up much or all of their annual leave.
Those on higher incomes were more likely to successfully access the non means-tested schemes
51% found applying for state support was ‘very difficult’. Issues included:
The difficulties varied according to geographic region.
Those that did access support from a patient group found it invaluable at a time of crisis. This charitable support included:
24% borrowed money from friends or family to pay hospital-related bills.
13% took out loans.
17% incurred debt through overdrafts and using credit cards.
37% used their personal savings to deal with their expenses.
‘You kind of know [your child] is getting the help they need and that you’re doing everything to get them sorted out medically. So because of that, in a way, the money is the biggest stress. It’s the money that has you thinking "how am I going to do this, how am I going to do that" . . . your part in it is making sure the money is there for them to get what they need . . . the more difficult thing to manage is making sure we have the money day to day to look after all the other costs we have when we’re up at the hospital’.
‘[Parents are] already paying for their place back home. They’re paying for accommodation in Dublin and mortgage or rent back home … We’re asking families to live in two places’
'[My partner] wasn’t in a good headspace; he was on high alert all the time and wasn’t able to perform to the best of his ability. The stress for him of having to stay in [work] to support us when really all he wanted was to be with us.'
‘Parents should not need to incur additional costs or suffer loss of income.’
Article 3 states that, in all actions taken by public and private authorities, ‘the best interests of the child shall be a primary consideration’. Article 18 says that families are entitled to state support in fulfilling their duties towards their children.
This Policy Framework says that the state intends to ensure that parents are ‘equipped and supported to raise their families, to play their role as their children’s primary carers, to promote the best possible outcomes for their children and to meet all challenges that may arise’.
Research conducted between July and December 2019:
CHI wishes to express its gratitude to all those who helped in the undertaking of this study.
It acknowledges with thanks the contribution made by the more than 300 parents who completed its survey and the input of the parents, social workers and NGO staff members who took part in interviews. It greatly appreciates the co-operation of CHI at Crumlin, CHI at Temple Street, and Sligo University Hospital in facilitating the study and the valuable assistance of the many charities which helped to distribute the survey questionnaire.
Our thanks and appreciation also to Andrew Daly, Researcher at Children in Hospital Ireland.