Pediatric Nurses’ Experiences of Caring for Children with Genetic and Congenital Disorders in a Resource-Constrained Healthcare Setting: A Qualitative Study

Imagine a pediatric nurse as a Captain of a tiny, high-stakes rescue boat. Their mission? To steer children with tricky, birth-related health puzzles (like genetic glitches or congenital disorders) through stormy seas toward safety. Now, picture this rescue boat not in a high-tech harbor, but in a resource-scarce port in Peshawar, Pakistan, where the boat is leaking, the map is blurry, and the crew is exhausted.

This paper is a deep dive into the lived experiences of 12 of these brave Captains (nurses) who work in a big teaching hospital there. They didn't just fill out a checklist; they sat down for deep, heart-to-heart chats with researchers to share what it really feels like to do this job.

Here is the story of their journey, broken down into five big waves they have to ride.

1. The Heavy Backpack of Feelings

The first thing the nurses shared is that their jobs come with a massive emotional backpack. It's not just "sadness"; it's a heavy mix of heartache, anxiety about the kids' futures, and a special kind of tiredness called "compassion fatigue."

One nurse described it like this: "These kids can't even hold their heads up sometimes. You feel pain in your heart." Another admitted, "Even after my shift ends, I lie awake wondering how they will survive like this forever."

It's like carrying a heavy stone in your pocket all day. But here's the twist: the backpack also holds tiny, glowing gems of joy. When a child takes a small step forward or improves just a little, the nurses feel a surge of pride. "You feel proud when a child improves a little. Even small progress gives happiness," said one nurse. The paper suggests this mix of deep sorrow and deep purpose is a constant tug-of-war in their hearts.

2. The Silent Language and the Scared Parents

Next, the nurses face a communication maze. Many of the children they care for cannot talk. They can't say, "My tummy hurts" or "I'm scared." The nurses have to become detectives, reading tiny clues like facial expressions, tears, or the pitch of a cry to guess what's wrong.

"We guess from facial expressions or crying. They cannot tell what hurts," explained one nurse. They use soft voices, gentle touches, and toys to calm the kids down during scary procedures like feeding tubes or suctioning.

But the maze gets bigger when they talk to the parents. Parents are often terrified, overwhelmed, and sometimes believe these conditions are just "fate" or a test from God. The nurses have to be patient translators, explaining complex medical stuff over and over again in simple, gentle words. "Parents are already scared... we explain many times in a soft way," noted a nurse. It's a delicate dance of listening, reassuring, and trying to build trust without breaking the family's spirit.

3. The Leaking Boat: Not Enough Gear or Hands

Now, let's talk about the boat itself. The paper paints a picture of a severely under-equipped ship. The nurses often find themselves waiting for a single suction machine to be shared between two patients. "Sometimes we wait for one suction machine for two patients. It delays treatment," one nurse said.

It's like trying to bake a giant cake with only one spoon and no oven. There aren't enough child-sized wheelchairs, feeding pumps, or monitoring devices.

Then there's the crew. The ratio of nurses to patients is high, meaning one nurse is often juggling many kids at once. "We cannot give proper time to each child because one nurse handles many patients," shared another. Worse, there are no extra hands to help lift or position the kids. The nurses have to do the heavy lifting, the feeding, and the cleaning all by themselves. This leads to moral distress—a feeling of frustration and helplessness because they know what the kids need, but the boat just doesn't have the gear or the crew to give it.

4. Learning by Doing (The "On-the-Job" School)

Here is a surprising part of the story: Most of these nurses didn't learn their special skills in a classroom. They learned by watching the older, more experienced nurses and doctors.

"We were directly posted. Most of our abilities we learnt by witnessing the elders," said one nurse. They figured out how to feed kids through tubes, manage seizures, and calm anxious parents just by being there and trying.

But the paper suggests this "learn-as-you-go" method has a gap. While they are great at the practical stuff, they feel they are missing the theoretical map. They want formal training on genetics, how to talk to special-needs kids, and how to counsel parents. "One training session a month would help us improve care a lot," they suggested. The paper indicates that without this formal education, they are flying by the seat of their pants, even though they are incredibly dedicated.

5. The Slow Climb to Acceptance

Finally, the nurses watch the families go on a journey. At first, parents are in shock and denial. They might cry silently or refuse to accept that their child has a lifelong condition. Some even have unrealistic hopes for a quick cure.

But, the nurses act as guides. Through consistent, gentle support, many parents slowly move from denial to active participation. They start helping with feeding, positioning, and comforting their children. "When we educate them slowly, they start helping us with feeding, positioning, and comfort," a nurse observed. The paper suggests that when nurses treat families with respect and empathy, the families cope better and the whole team works together more smoothly.

What the Paper Does NOT Say

It's important to know what this story doesn't claim. The paper does not say that these problems are solved, nor does it suggest that the current system is working perfectly. It explicitly rules out the idea that nurses are just "doing their job" without feeling the deep emotional toll; the data shows they are suffering from stress and burnout. It also does not claim that the findings apply to every single hospital in the world; this is a specific look at one hospital in Pakistan, and the authors admit we don't know if the same story plays out in private hospitals or rural villages.

The Bottom Line

This paper suggests that pediatric nurses in resource-limited settings are incredibly resilient heroes who are doing their best with very little. They are carrying heavy emotional loads, solving communication puzzles, and fixing equipment shortages all at once.

The authors propose that to help these Captains steer their boats safely, we need to fix the boat (give them better equipment and more staff), train the crew (offer formal education on genetics and counseling), and support the hearts (provide psychological support so they don't burn out). Until then, these nurses will keep navigating the stormy seas, finding small moments of joy in the chaos, and holding the line for the children who need them most.