Going home: coping with the transition between hospital and home

Most parents are anxious going home for the first time after a lengthy  stay in the hospital

Within the hospital, families are wrapped in a cocoon of care. They feel safe, supported and never alone. The transition home can feel overwhelming, and  parents often feel lost, frightened and uncertain, as the safety net of constant medical support falls away. Parenting is about giving children roots and wings; however, at this moment, it is parents who need the stability of roots and the confidence to take flight. The first time going home shifts the responsibilities from the hospital to them, and that can feel overwhelming. Parents often experience significant anxiety when returning home, driven by fears of managing complex care without medical supervision, preventing infection, recognising emergencies, and coping emotionally with the responsibility of their child’s ongoing treatment. You are not alone and the things parents / caregivers fear the first time they transition between the hospital and home in between treatments are very real. 

- Parents worry about medical emergencies at home — missing signs of complications such as fever, infection, or bleeding, or not knowing when something is urgent enough to return to hospital. They fear doing something wrong that could harm their child.

- Parents worry about hygiene, food safety, cleanliness and the possible risk of infection.  You might worry that your home is not safe enough, or about being exposed to germs from siblings, visitors, or in public spaces. 

- When at home for the first time with your child diagnosed with cancer, you will need to manage treatment and care. You might worry that you will give the medication incorrectly (wrong dose, wrong time), and might feel unsure of how to handle medical equipment, e.g. ports, feeding tubes, etc.  Managing side effects like nausea, pain, or fatigue might also be a new and unknown experience.

- You will feel a loss of immediate professional support and might feel alone and unsure without nurses and doctors nearby to give you instant reassurance when something seems wrong. Chemotherapy and other cancer treatments can alter a child’s sense of taste and smell, making familiar foods unappealing or different in flavour. These changes can have a direct impact on appetite, food preferences, and overall nutritional intake. It is normal for parents to be concerned about nutrition and whether the child is getting better. 

- Most parents experience emotional and psychological distress when they feel that they are not coping as a parent. They fear guilt or self-doubt and  constantly worry that they might miss something. Parents experience anxiety about the future of their child and whether the child will survive and be okay.

- Having a child diagnosed with cancer disrupts the normal family life and parents constantly need to manage the siblings and their exposure to the new routine and questions from the community. 

- Parents worry about their work and household responsibilities and how to balance life. Financial stress is an ongoing concern and can have a negative influence on the family and marriage. 

Practical ways parents / caregivers can cope

That transition from the “hospital cocoon” to home can be made much less overwhelming with the right practical support in place. The key is to replace uncertainty with structure, access, and reassurance.Effective transition home requires structured discharge planning, accessible support, practical tools, and early follow-up. By combining clear clinical guidance with psychosocial reassurance, families can move from fear and uncertainty to confidence and capability in caring for their child at home.

- Ask for clear discharge preparation before leaving hospital. Ask the medical team for a simple, written care plan (not just verbal instructions) that will include medication schedule (with times and dosages), warning signs (e.g. fever thresholds, when to return immediately) and emergency contact numbers. Ensure that this care plan is easily accessible, either in a notebook or a device and do a teach-back repeating the care plan to the medical team to ensure that you understand it correctly. 

- Ask for a clear safety plan for the first 48 hours at home.  Ask the medical team to explain to you what a normal behaviour or symptom is and what would be abnormal enough to worry about.   Remember that you will feel uncertainty. Ask what support will be available should you need help. 

- In the hospital you had 24/7 access to support. Ask for a reliable contact person and ensure that you have a contact number available.  Remember that no question is too small and when in doubt, rather call the treatment team or person appointed to support you.

- Use Tips [from parents who have been through the journey] to help keep your child well at home. (See below). You can print this out or involve the siblings to make a little poster to put up in your house for everyone to be reminded of what is expected and to inform visitors. Avoid overwhelming detail and keep information simple.  Visible information [tips]  about hygiene and infection control, food safety and nutrition and how to manage side effects like pain, nausea, fatigue will help your family and friends to be alert. 

- Ensure that you have the following available: a thermometer (critical for fever monitoring), hand sanitiser and easy-to-understand instruction leaflet. This will give you a sense of readiness and control from day one. Do not forget comfort items for the child. 

- Develop medication management tools that will help you like pillboxes, printed or digital medication charts, alarm reminders on phones, and colour-coding or simplifying where possible. Apps are available to organise tasks, medications, appointments, and routines, specifically for medication reminders, symptom tracking, care schedules, and grocery or meal planning. Household apps can be adapted for households with patients to coordinate who does what and when. Health and Wellness Support Apps are more clinical, combining home care with patient monitoring like symptom tracking, appointment reminders and direct communication with health professionals. 

- Work closely with the psychosocial team who will prepare you for the transition. Be honest about the feelings you experience and accept guidance and help. Reach out to parent support groups – peer assurance is powerful and can help you during the transition phase. 

- Some childhood cancer foundations and other support organisations have either a home-away-from-home (HAFH) programme or a step-down facility. These accommodation facilities are usually close to the hospital for high-risk patients.  Transport support is available for a quick return if needed, and this reduces the fear of being too far away.

- REMEMBER: You don’t have to do this perfectly, YOU ARE NOT ALONE and if you are unsure, rather call the hospital, a trusted member of the support group or a trusted confidant—someone you can turn to for reassurance, guidance, and emotional support when you feel uncertain or anxious. 

Tips to help keep your child well at home [From parents who have been through the journey].

You can print this out or involve the siblings to make a little poster to put up in your house for everyone to be reminded and to inform visitors.

Remember that the treatment process reduces your child’s immunity and ability to fight off germs. This is an essential part of treatment, but it makes your child more likely to get sick, so here is how you can help:

- Washing hands or using a hand sanitizer to reduce the spread of germs. 

- Regularly clean any toys that your child plays with.

- Do not allow anyone who has a snotty nose, runny tummy, chickenpox, shingles, mumps, or measles to visit your child. It could delay your child’s treatment if they get sick. 

- When your child’s blood counts are low, limit visitors to one or two healthy people at a time and avoid very young children visiting at all.

- Avoid all take away foods and reheated food. If possible, only allow your child to eat freshly made home food.

- Use clean knives/forks/spoons for your child. Avoid sharing utensils or food.

- Avoid all pets that are kept in cages (especially birds and reptiles) and limit contact with other pets. Do not let pets sleep on your child’s bed or in your child’s room.

- Do not smoke near your child or in the house.

- If your child has a fever over 38ºC / 100.4ºF, phone the ward and speak to the sister in charge to get instructions. If the temperature is not reduced, please phone the ward again and then bring your child in.

- Do not give your child any over-the-counter / homeopathic medicines or supplements unless cleared with your paediatric oncologist. These can interfere with the treatment process and reduce its effectiveness.

Read more

- CHOC Childhood Cancer Foundation SA. 2020. Going home [p 61]. https://choc.org.za/wp-content/uploads/choc-parent-handbook.pdf

- KidsHealth Hauora Taitamariki. n.d. Frequently Asked Questions About Care For Your Child With Cancer At Home. https://www.kidshealth.org.nz/childhood-cancer/frequently-asked-questions-about-care-for-your-child-with-cancer-at-home

- Children’s Hospital Association. 2022. Promoting Safe Hospital-to-Home Transitions. Best practices for improving hospital-to-home family or caregiver written discharge instructions to reduce potential medical complications. https://www.childrenshospitals.org/content/quality/report/promoting-safe-hospital-to-home-transitions

- St. Jude Care & Treatment. n.d. Transition Oncology Program. The Transition Oncology Program (TOP) offers you and your family support and guidance during this time of transition off treatment. https://www.stjude.org/care-treatment/patient-families/childhood-cancer-survivors/transition-oncology-program.html

-Irish Cancer Society. n.d. Life at home during treatment. https://www.cancer.ie/childrens-cancer/treating-childrens-cancer/life-at-home-during-treatment

Peer review

- Cassandra S Prather, et al. 2025. Caregiver Perceptions of the Transition From Hospital to Home for Children With Cancer. Pediatric Blood & Cancer. https://onlinelibrary.wiley.com/doi/10.1002/pbc.32067

- Sophie Ronan, et al. 2020. Parents' experiences of transition from hospital to home of a child with complex health needs: A systematic literature review. Journal of Clinical Nursing. https://onlinelibrary.wiley.com/doi/10.1111/jocn.15396

- Thais Maia Teixeira Vieira, et al. 2025. Educational-Care Needs for Hospital–Home Transition of Children With Hematological Cancer. Nursing Research and Practice. https://onlinelibrary.wiley.com/doi/10.1155/nrp/4551422

- Josefine Tang Rǿrbech, et al. 2025. Siblings lived experiences of transitions between hospital and home in paediatric oncology: A qualitative study. European Journal of Oncology Nursing. https://www.sciencedirect.com/science/article/pii/S1462388925000778#:~:text=This%20study%20aims%20to%20explore,paediatric%20oncology%20centre%20and%20home.

- Sara Raquel Kuntz, et al. 2021. First transition from hospital care to home care for children with cancer: guidelines of the multi-professional team. Research Escola Anna Nery 25(2)2021.  https://www.scielo.br/j/ean/a/Z4RhCYkM69Tbw7v7GwkbKwj/?format=pdf&lang=en#:~:text=Objective%3A%20To%20describe%20the%20guidelines,children%20with%20cancer%20from%20the

Apps

There are many apps available to support families navigating the childhood cancer journey, but not every app will suit every situation. Different types of apps serve different needs:

- Caregiver or Home Care Apps help family members or informal caregivers organise medications, appointments, daily routines, and care tasks. 

- Household Management Apps focus on everyday responsibilities such as cleaning, grocery shopping, bill payments, and meal planning. 

- Health & Wellness Support Apps offer more clinical features, including symptom tracking, patient monitoring, appointment reminders, and sometimes direct communication with healthcare professionals. 

- Care Coordination Apps are designed for more complex or long-term care, helping to manage multiple aspects of chronic or serious illness. 

Below are some examples of apps you can download from the Google Play Store or Apple App Store, depending on your device.

- CHOC Childhood Cancer Guide. 2025. Google Play Store. https://play.google.com/store/apps/details?id=com.entelect.chocApp&hl=en-US

- Phoenix Children’s Hospital. 2020. Our Journey with Cancer. App Store. https://apps.apple.com/ie/app/our-journey-with-cancer/id1487121075

- Family Wall: Family Organizer: https://www.familywall.com

- Sawera Health Foundation. (2025). Sawera app [Mobile application]. Google Play Store. https://play.google.com/store/apps/details?hl=en_NZ&id=ch.SHF.Sawera&utm

- 4baseCare. (2024). OncoBuddy [Mobile application]. https://play.google.com/store/apps/details?hl=en_ZA&id=com.oncobuddy.app&utm

- ZenOnco.io. (2024). ZenOnco Cancer Care [Mobile application]. https://apkpure.com/zenonco-cancer-care/com.zenonco.cancer?utm