【A Must-Read for Families Accompanying Hospitalized Children】Challenges and Tips When Your Child is Hospitalized

Did you know that when a child is hospitalized, parents are often required to stay overnight with them?

Among families with children who are frequently hospitalized or have disabilities, this is known as "accompanied hospitalization," and it has become a significant issue.

I've mentioned it as an "issue," but why is accompanying a child during hospitalization considered a problem?

The reason is that the environment for parents during accompanied hospitalization is extremely harsh.

In this article, I will introduce the challenging environment that has become a problem and how families who have experienced accompanied hospitalization manage to overcome it, based on my own experiences.

1. What is the Issue with Accompanied Hospitalization for Children?

When a child is hospitalized, parents are almost forcibly required to accompany them, but their freedom and comfort are not considered, which forms the core of the accompanied hospitalization issue.

Reference: Just had to endure... Days accompanying a sick son｜NHK

Parents have virtually no freedom. Expressions like "no human rights" are even seen on social media.

1-1. The "House Arrest" State Created by Accompanied Hospitalization

When a child is hospitalized, parents basically cannot leave the hospital room.

This is because leaving a child alone in the hospital room could lead to unforeseen incidents.

There is a risk of the child climbing over the bed rails and falling or pulling out an IV.

Moreover, the child's condition could suddenly change.

In the case of children with disabilities, they might not be able to press the nurse call button even if they feel unwell.

In such situations, can a parent leave their child's side?

Parents literally have to provide constant care, creating a "house arrest" state for the parents.

Even when going to the restroom, parents must consider the child's condition and timing.

Basic activities like buying food or taking a shower are not freely possible.

Parents rush to do these things when the child is napping or when their condition and mood are stable.

Even when away from the hospital room, parents constantly worry about their child's condition, never truly relaxing.

1-2. Inadequate Meals

Parents often cannot have proper meals.

While children receive hospital meals, there are none for the parents. Many who have experienced accompanied hospitalization seem to rely on the hospital's convenience store.

Reference: Survey on the Living Conditions of Families Accompanying Hospitalized Children 2022｜Certified NPO Keep Smiling

Eating convenience store rice balls, bread, or bento almost daily naturally leads to nutritional imbalances.

This can cause some to fall ill.

Physical strength gradually depletes, and not being able to choose satisfying meals can also sap one's spirit.

As mentioned earlier, going shopping is difficult, so skipping meals is not uncommon.

When shopping opportunities are missed, some manage with long-lasting snacks, retort foods, or instant foods they brought with them.

1-3. Poor Sleeping Conditions

At bedtime, parents sleep with their child in a pediatric bed.

Some hospitals provide simple beds, but they all share the common issue of being narrow sleeping spaces where even turning over is difficult.

Depending on one's body type, some may not even be able to stretch their legs.

Parents worry about waking the child with the creaking of the bed, are disturbed by the monitor's light, or are awakened by the nurse's flashlight during night rounds, making it hard to get a good night's sleep.

1-4. Other Issues with Accompanied Hospitalization

There are many other challenges, such as limited shower times, days when showers can't be used due to reservation systems, and hygiene issues.

In addition to the costs of meals, laundry, refrigerators, and TVs, working while accompanying a child is difficult, leading to economic concerns.

The longer the hospitalization, the greater the burden on the parents.

Furthermore, the situation worsened during the COVID-19 pandemic.

For example, restrictions such as prohibiting the change of accompanying persons or visits by anyone other than the accompanying person made life even more challenging.

This is the reality of the accompanied hospitalization issue. Even though refusing to accompany is currently difficult, families must find ways to get through it.

2. How to Overcome the Issues of Accompanied Hospitalization?

2-1. Things to Confirm Before Accompanied Hospitalization

While it's unfortunately not possible to solve all the current issues, preparation can somewhat improve comfort.

First, it's a good idea to understand the hospital's facilities, rules, and available support.

Since facilities and rules vary by hospital, if possible, confirm the following to prevent overpacking or underpacking when preparing your belongings.

・Are there any items available for loan or provided as supplies (hairdryer, electric kettle, etc.)?
・When can the shower be used, and what are the usage times, frequency, and rules?
・Is it possible to change the accompanying person?
・How far are visits allowed (only relatives, friends also allowed, etc.)?
・Can you receive deliveries?

Additionally, reading blogs or articles about accompanied hospitalization to visualize the actual lifestyle can also be helpful in preparation.

2-2. Essential Items for Accompanied Hospitalization

Let's also introduce how those who have experienced accompanied hospitalization manage to overcome it.

The site "Tsukisoi Oendan" allows you to view reviews posted by those who have experienced accompanied hospitalization.

Reference: Tsukisoi Oendan｜Certified NPO Keep Smiling

There is a thread where people post "useful items to have during accompanied hospitalization," and here are some excerpts.

・Extension cord
・Mattress
・Skincare products
・Laundry items like foldable hangers and laundry nets
・Non-perishable food items like instant and canned foods
・Pocket Wi-Fi, tablets, and other items for entertainment

Many ideas for using camping gear and dollar store items are posted, and I found some of them quite insightful.

For more details, please check the site below.

Reference: Please share "useful items to have during accompanied hospitalization"!｜Tsukisoi Oendan

3. Is Insurance Applicable for Accompanied Hospitalization?

When undertaking accompanied hospitalization, you may need to bear more costs than expected.

If insurance can be applied, it is possible to reduce the out-of-pocket expenses.

For expenses incurred during accompanied hospitalization, if the child is enrolled in medical insurance under their name, the insurance is applicable.

However, if the parent is enrolled in medical insurance under their name, the insurance does not cover accompanied hospitalization, so caution is needed.

If the child's hospitalization period is extended, the out-of-pocket expenses tend to increase.

Additionally, if you take time off work to accompany the child, your income may decrease.

Therefore, it is also recommended to consider enrolling in mutual aid or private medical insurance under the child's name.

4. Introducing Organizations Supporting Families of Children Requiring Accompanied Hospitalization!

The certified NPO Keep Smiling, which operates the "Tsukisoi Oendan," is also involved in initiatives to support accompanied hospitalization for children.

One such initiative is the "Accompaniment Life Support Pack."

Reference: [Expanded from April 2022] Free "Accompaniment Life Support Pack" for families accompanying children in long-term hospitalization!｜Certified NPO Keep Smiling

For those expecting a hospitalization of more than two weeks, they provide a free package of food, daily necessities, and hygiene products.

Additionally, they have activities like "Meal de Smiling," where meals are prepared by professional chefs and nutritionists, and they regularly conduct and publish surveys on the realities of accompanied hospitalization, making proposals.

Recently, in response to a survey on accompanied hospitalization conducted by the Ministry of Health, Labor and Welfare, which ended with a response rate of only 1.4%, they quickly captured dissatisfaction from those with experience in accompanied hospitalization and conducted their own survey.

Reference: To seek a place to review the accompaniment system and consider specific countermeasures, we have launched the "Survey on the Living Conditions of Families Accompanying Hospitalized Children 2022," gathering voices from 1,000 people nationwide｜Certified NPO Keep Smiling

The total number of questionnaires collected from those with experience in accompanied hospitalization was over 3,600, indicating a high level of interest in this issue.

5. Conclusion

Seeing your child hospitalized due to illness or injury and undergoing treatment is painful in itself.

There are painful and difficult treatments, and parents supporting them nearby also bear some burden.

In addition to this, the harsh living environment and inability to recover from fatigue lead to the severe aspect of the accompanied hospitalization issue, where both mind and body are pushed to the limit.

While accompanied hospitalization is officially "at the parent's request," in reality, it is almost mandatory, and resolving this situation immediately seems difficult.

Reference: "Mental Strain" of Harsh Accompanied Hospitalization for Children, Why Aren't Parents' Voices Reaching the Government? Ministry of Health's Survey Ends with Only 1% Response Rate? Support Still Lags｜47NEWS

For now, we can only explore ways to make the situation more comfortable through self-help efforts, but let's also rely on the support of organizations, family, and hospital staff to somehow get through until discharge.

When feeling lonely, try searching "#accompaniedhospitalization" on social media. Just knowing that others are also experiencing accompanied hospitalization might lighten your heart.

Ayumi introduces communities for parents with children requiring medical care in the following article, so please take a look.

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