Quantifying the costs of hospital admission for families of children with a febrile illness in the North East of England

Introduction

A child’s hospitalisation has broad consequences for the whole family. Not only is it a situational stressor, it can cause a significant financial and emotional impact on the family system with high levels of parental anxiety.1

Parents are encouraged to stay with and be involved in their child’s care while in hospital.2 This leads to significant disruption of day-to-day life with parents or carers needing to balance work and care obligations at home and in hospital, plus other social commitments.3 These adjustments can generate additional out-of-pocket costs. In the UK the out-of-pocket costs to families only concern non-medical costs, unlike the USA where hospitalisation includes both medical and non-medical costs. Non-medical out-of-pocket costs are the directs costs associated with, for example food, travel, childcare and loss of earnings. Excluded from these costs are expenses such as fees for medical services and medication.4 Although these costs to families are recognised, they are under researched and largely invisible.5

Previous studies from the USA estimated the average non-medical out-of-pocket costs range between US$97 and US$125 per day of a child’s hospitalisation.4 6 It is difficult to compare the US costs to the UK costs, due to differences in healthcare systems and funding. In the US families are required to cover medical costs, unlike the UK which has universal health coverage. Most literature on out-of-pocket costs originate from the USA and include both medical and non-medical costs. Literature from countries with universal healthcare is sparse. If the admission of a family member incurred high medical and non-medical out-of-pocket costs other children were more likely to have unmet health needs.7 In paediatric cancer, an economic evaluation review demonstrated non-medical costs can range between 0.2% and 283% of their families’ annual income.8 Additionally, 77%–94% of childhood cancer patients’ parents report work disruptions3 9 and in 42% of families a parent had to quit their job because of their child’s illness.9

Following current global events including Brexit, the UK entered a cost-of-living crisis in late 2021, throwing millions of families into poverty.10 The North East of England11 has the second highest rate of child poverty in England,12 with 25.9% of families living in low-income families.13 High levels of socioeconomic deprivation have been associated with increased emergency department attendance and admission in children.14 15

Febrile illness is one of the most common causes of paediatric emergency department (PED) attendance and subsequent hospitalisation16 17 and, the most common complication for immunocompromised children.18 19 Febrile children often require additional tests to exclude serious illnesses and are admitted for empiric antibiotic treatment awaiting results.

This study aimed to assess the non-medical out-of-pockets costs of a febrile child’s admission.

Methods

Results

Recruitment and demographic data

Participants of 83 families completed the survey (figure 1), with a 97% completeness rate. Most surveys were completed by parents/carers (N=73, 88%). The majority of main carers in-hospital were mothers (N=70, 84.3%). The median age of the children was 7 years (IQR 3–11), and half were admitted for >2 days (N=44, 53%, table 1).

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Figure 1

Geographical distribution of participants completing the survey (N=76). Seven participants did not provide their partial postcode.

Table 1

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Participant demographics, stratified by group

79 participants (95.2%) reported non-medical out-of-pocket costs. Nearly all participants had costs for transport (N=75, 90.4%) or food and drinks (N=71, 85.5%, figure 2). An overview of all costs is reported in table 2.

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Figure 2

Proportion of non-medical out-of-pocket costs incurred by participants, stratified by cost category.

Table 2

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Non-medical out-of-pocket costs in £ by costs category and by group

Childcare costs

While only 23 participants (27.7%) reported childcare costs, this was perceived as difficult and expensive to organise.

I have two younger children and had to arrange a last-minute babysitter overnight for them as I am a single parent. (participant 43)

This was reflected in the proportionate costs incurred (figure 3), per day median £38.75 (IQR £11.04–£71.88).

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Figure 3

Boxplot of costs per day in £ by costs category.

Loss of earnings

Loss of earnings contributed significantly to the total costs families faced (figure 4). 44.6% of participants (N=37) reported costs, which amounted to a median £81.67 (IQR £37.71–£138.33) per day.

Partner [is] self-employed and has lost £300 per day. He’s tried to work as much as he can through this, but our loss is around £600. (participant 36)

Most often income was lost by the parent in-hospital (N=32, 38.6%) and included not just financial losses but also loss of opportunities and clients if services could not be delivered.

My husband is self-employed and cancelled a few jobs to be here [in hospital]. (participant 67)

I am still struggling to get work back to normal again and lost clients. (participant 42)

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Figure 4

Boxplots of total admission costs per day for all participants, including and excluding loss of earnings.

Total costs and financial impact

All costs combined, total admission costs were median £221 (IQR £61.50–£695). Per day, this amounted to median £56.25 (IQR £32.10–£157.25) (figure 4).

One participant provided an exemplary breakdown:

27 days hospital so far. £18 per day parking = £486. Petrol = £50 over 3 admissions, as we are from another town. Food/snacks approx. £10 per day (and that’s bringing our own in too as hospitals are expensive) = £270. So around £800! Plus annual leave or pay loss which is around £75 per day. (participant 15)

Ten participants (12%) required additional support, and 19 participants (22.9%) subjectively reported financial hardship directly caused by this hospitalisation.

Our final question was to ask families if there were any unexpected costs that we did not ask about. 14 (16.9%) participants responded and most stated that costs for entertainment, while not a necessity, were important to their child’s well-being:

I’ve spent more money on things like drinks, snacks and entertainment on tablets to keep my child settled. (participant 43)

Discussion

Our results demonstrate hospitalisation for paediatric febrile illness incurs significant costs for families. These costs have a knock-on effect on the wider family network.7

Two studies4 6 investigating non-medical out-of-pocket costs in general paediatric populations reported median total costs around US$450. This is higher than our reported total costs, but both studies included accommodation costs, had longer length of in-hospital stays, and covered larger geographical areas. Two studies on family costs in intensive care,21 22 reported daily costs of €30–57 per day, in line with our data. Little published UK data is available on this topic and results of studies from the USA are not easily extrapolated to the UK setting, due to significant differences in healthcare systems and the funding thereof. While median £56.25 per day may not seem a high cost, this needs to be understood in the context of the UK weekly average household expenditure from the 2021 Census which is £528.80.23 This means that a week’s admission (£393.75) would cost approximately three-quarters of the entire week average household expenditure.

Most families incurred travel and food costs. Our region has relatively poor public transport for rural communities, mandating car travel and incurring significant petrol and parking costs. 15% of households live in fuel poverty, approximately 1 million citizens, compared with a 12% England average.24 Our centre does not provide meals for resident parents, except breastfeeding mothers. Unable to leave, parents are required to buy food in-hospital or take-aways, limited and expensive options.

Although only incurred by a quarter of participants, childcare accounted for a significant proportion of total costs. In the UK, childcare is expensive and availability limited.25 Organising emergency childcare can be difficult, especially in single-parent households or for children with special needs. Admissions might leave other children in the household unable to attend school or enrichment activities, negatively impacting development.26

Crucially, nearly 50% reported loss of earnings, and one in five reported subjectively that hospitalisation directly caused financial hardship:

Due to current cost of living situation we are currently living pay-to-pay. The extra cost of this visit was something we could have done without as we had to use money for our rent due to it not being an expense we expected. (participant 56)

Lower-income households are financially more vulnerable and disproportionally affected.27 The impact on purchasing power is felt more strongly than for higher-income families. In our region this is even more pressing with average weekly earnings only 65.2%–88.7% of the England average, 21.9% of children live in absolute low-income families (vs 15.6% in England) and 29.4% live in the 20% most deprived deciles.13

While the hospital system is not expected to finance out-of-pocket costs incurred by families, there is an ethical obligation to minimise these costs and signpost to supportive services. Social prescribing link workers are employed in the UK to improve links between hospital and social care and ensure families-in-need access all the aid and benefits available to them.28

The 30% of all UK children29 living in poverty experience worse health outcomes than their peers.30 In 11 constituencies in the North of England over 45% of children live in poverty.24 Obesity, asthma, dental caries and bacterial infection in infants31 32 are associated with a disadvantaged background and increase the likelihood of unplanned admissions. In England, children from the most deprived areas account for fewer GP or outpatient consultations and more PED visits and unscheduled admissions compared with the least deprived children.31 33

No parent or child should go hungry. Resident parents/carers have little choice in relation to food provision while their child is in hospital. They often rely on more expensive retail outlets which can result in additional financial stress, skipping meals and eating less healthily.24 Due to the cost-of-living crisis, increasing wage gaps and lower subsistence benefits levels, the right of access to accessible and adequate food is under pressure, particularly for the vulnerable, such as the sick (and their carers), the elderly and those in poverty.34 In September 2022, 27.8% of households in the North East of England were experiencing food insecurity, up from 15.2% in April 2022, and compared with the 18.4% England average.24 This is the cornerstone to Sophie’s legacy (https://www.sophieslegacy.co.uk/parentstobefed), a charity supporting resident parents to be fed. An internal quality improvement project of Sophie’s legacy within our hospital showed 96% of parents (N=319) receiving a lunch and hot meal voucher, felt this reduced financial strain:

This has made a huge difference to me and my child, as I’ve been able to stay and help support my child on their most difficult days as I’m not hungry and able to give better support. This has also ensured that I have not had to go into debt to afford to eat whilst my child is staying in hospital and I cannot work.35

Consideration of parents’ circumstances at discharge is vital. We need to be asking if families have sufficient food, fuel and money for travel on discharge, as often children require ongoing care including medication, rehabilitation and follow-up appointments with further costs. One of the most challenging costs is hospital parking. Although unavoidable and capped, this is still significant (£18 a day). A policy supporting admissions could include carpark fee waivers or food and fuel vouchers.

In the era of family-centred care, there is little awareness of non-medical out-of-pocket costs and its impact, despite paediatric services relying on high family involvement.2 6 Greater social disadvantage leads to greater health impacts,32 and policies could be tailored with a focus on proportionate universalism, in which services are available to everyone but scaled to the level of need of the individual family.32 It is vital support is available to those at risk of poverty and not only those in poverty. We need to prioritise financial support for acute admissions to reduce health inequalities and disproportionate impact that ‘out-of-pocket’ costs have on families from disadvantaged backgrounds.32

Conclusion

Hospital admissions for febrile illness, can be expensive and lead to financial hardship for families. There is a role for hospitals to help mitigate this. Supporting policies should be universal but proportionate, as the impact of these costs disproportionally affect lower-income households. Further work on an (inter)national level would allow for comparison across countries, identify differences in policies and differences in the financial costs of hospitalisation for families.