Table 3.
Qualitative findings from remaining open questions
| Questions and themes | CYA (N) | Parents (N) |
|---|---|---|
| Hospital: I worry the hospital is no longer a safe place during the virus outbreak | ||
| May come into contact with infected patients/staff/visitors | 21 | 37 |
| Most likely to catch the virus at the hospital | 15 | 37 |
| No social distancing with people not following hygiene rules | - | 26 |
| Confident that my hospital is taking measures | 5 | 6 |
| Not confident that hospitals are taking measures | 4 | 2 |
| Avoid going to the hospital unless necessary | 4 | - |
| Worry I may pass on the virus to vulnerable people | 2 | - |
| Positive aspects: I have experienced some positive things to come out of the virus outbreak | ||
| Spending time with family/better relationships with family members | 37 | 80 |
| Community coming together | 12 | 22 |
| Changes in the wider society | 4 | 11 |
| Appreciating simple things | 1 | 8 |
| Mood: In relation to the virus outbreak, my mood or behaviour has changed, if so in what way? | ||
| Mood amongst CYAs and parents—self report | ||
| Frustrated/less motivation | 35 | 41 |
| More stress and anxiety | 12 | 52 |
| More relaxed | 6 | 16 |
| Depressed/low mood | - | 12 |
| Tired of juggling many responsibilities | - | 11 |
| Motivated | 1 | - |
| Mood amongst CYAs—parental report | ||
| Bored/frustrated | - | 28 |
| Missing friends | - | 22 |
| Enjoying positive aspects/adjusting well | - | 15 |
| Stressed/anxious | - | 11 |
| Depression/low mood | - | 9 |
| Change of eating habits | 2 | |
| Information: Where do you get information on the virus and what other information may you need? | ||
| Source of information | ||
| Media | 48 | 83 |
| NHS (hospital team/website/GP) | 27 | 53 |
| Government (daily briefings, government website, letters and texts) | 25 | 53 |
| Charities | 8 | 31 |
| Social media | 14 | 14 |
| Internet—not specified | 5 | 19 |
| Family members and friends | 14 | 6 |
| Conduct own research/WHO/CDC | 5 | 8 |
| Workplace/school | 2 | 7 |
| Additional information required | ||
| More information on shielding | 4 | 7 |
| How virus effects children with CKD | - | 6 |
| Targeted information from hospital | - | 4 |
| Statistics of COVID-19 on children with CKD | - | 1 |
| Length of time lockdown is expected | 2 | - |
| Advice on those waiting for a transplant | 2 | - |
| Advice tailored to kidney patients | 1 | - |
| Efficacy of masks | 1 | - |
| Help available (financial; shopping) | - | - |
| Decision making: How do you make decisions about looking after yourself/your child in relation to the virus? | ||
| Common sense | 32 | 53 |
| Deciding to shield | 20 | 26 |
| Hospital team/NHS | 9 | 32 |
| Government | 6 | 27 |
| Own knowledge/family and friends | 12 | 19 |
| Decisions are child-led | - | 7 |
| I do not make decisions | 1 | - |
| Social media | 1 | - |
| News | - | 1 |
| Charities | - | 1 |
| Support: What additional support would you like? | ||
| No additional support required | 39 | 53 |
| More relevant information/more guidelines for those shielding | 12 | 13 |
| Mental health support | 7 | 10 |
| Support from hospital | 6 | 7 |
| Assistance to adjust to life after lockdown | 1 | 8 |
| Financial/employment/education | 4 | 4 |
| How to keep the child safe | - | 8 |
| Access to literature and relevant data | - | 8 |
| More appointment remotely/access to medication | 2 | 3 |
| Positive news/general reassurance | 1 | 4 |
| Support with home schooling | - | 4 |
| Availability of food delivery slots | 1 | 2 |
| Reassurance about the safety of hospitals | 2 | 2 |
| Testing of family members/PPE at home | 2 | 2 |
Thematic content analysis distilled the themes. Numbers do not necessary correspond with the numbers of respondents or number of questions as quotes were often broken down and categorised under a number of different themes
N = number of quotes