Needs of Formal Caregivers for Older Adults with Home Enteral Tube Feeding in China: A Qualitative Study

In many parts of the world, including China, the majority of older adults who need daily assistance remain in their own homes rather than moving into nursing facilities. This reality creates a unique challenge for those who are unable to swallow food safely. When the natural path from mouth to stomach is blocked or too dangerous to use, doctors insert a thin, flexible tube directly into the stomach through the nose. This tube allows liquid nutrition to flow straight into the body, keeping the person alive and healthy. While this medical intervention is life-saving, it turns the home into a place where complex medical tasks must be performed every day. The people responsible for these tasks are often paid caregivers, not family members. They are the ones who must mix the food, push it through the tube, and watch for signs that the tube is clogged or that the patient is in distress.

A recent study set out to understand the daily lives of these paid caregivers in Beijing. The researchers wanted to know what it feels like to be the person in charge of a stranger's life-sustaining tube, what skills they have learned, and what they need to do their job safely. By listening to the stories of fourteen paid caregivers, along with three community health workers and three hospital professionals, the team uncovered a system where these workers often feel isolated and under-supported. The findings suggest that while these caregivers are dedicated, they are frequently forced to learn by trial and error, relying on fragmented advice and the experiences of other caregivers rather than a clear, professional training system.

The study, conducted over the summer of 2025, involved in-depth conversations with people who had been caring for older adults with feeding tubes for at least one year. The researchers found that the path to learning how to manage these tubes is rarely a straight line. Instead of receiving a comprehensive, step-by-step course, most caregivers learned through brief demonstrations in busy hospitals. A nurse might show them how to push the food through once, or explain the basics while the patient is being discharged, but there is rarely time for a full lesson. One caregiver described the experience as simply copying what the nurses did, noting that the hospital staff were too busy to give detailed instructions. Once they returned home, the learning process continued through a patchwork of peer advice. Caregivers would chat with neighbors or other workers who managed similar cases, sharing tips on how to handle problems. If a tube got clogged, they might learn from a colleague to use a specific liquid to clear it, or they might invent their own method, such as using a sieve to filter out food particles that could cause blockages.

This reliance on informal learning creates significant risks. The study revealed that many caregivers lack confidence in their ability to handle complications. They expressed deep anxiety when patients vomited or coughed, unsure if these were normal reactions or signs of a dangerous blockage. Some admitted to making risky decisions, such as trying to feed a patient a small amount of solid food because the patient seemed to want to eat, even though this could cause choking or damage the tube. Others struggled with the mechanics of the equipment, unsure how to set the speed on feeding pumps or how to properly secure the tube so it wouldn't slip out. The gap in knowledge was so wide that some caregivers attempted to replace the tubes themselves when they could not find a doctor, a task that requires medical training and carries a high risk of injury.

The barriers to getting professional help are often practical and overwhelming. When a tube needs to be changed, which happens regularly, caregivers face a maze of logistical hurdles. In many cases, the elderly person is bedridden and cannot easily be moved. Getting them to a hospital might require calling an ambulance, which is expensive and difficult to schedule, or waiting for a family member to finish work to drive them. Community health centers, which are supposed to be the local source of care, often lack the equipment or the staff to perform these procedures. As a result, the responsibility falls entirely on the caregiver, who must decide whether to wait in fear or attempt a dangerous procedure alone. Even when they try to find help through online services, the quality of the care they receive can be inconsistent, with some providers arriving with poor-quality equipment.

Beyond the physical challenges, the emotional toll on these workers is profound. The study highlighted a deep sense of loneliness. These caregivers spend their entire day inside a home, often with a patient who is bedridden and unable to communicate. They have little social interaction and no one to talk to about their fears or frustrations. One caregiver described the feeling of being trapped, unable to leave the house even for fresh air because the patient cannot be left alone. This isolation leads to a heavy mental burden, where the caregiver feels they are the only line of defense for the patient's life. They crave emotional support and a chance to rest, but the system offers them little respite. They want to learn more, but they cannot attend long training sessions because they cannot leave their patients. They need information that fits into their busy, confined lives, such as short videos they can watch while working or live-streamed lessons they can listen to while cooking.

The researchers concluded that the current system leaves these essential workers in a vulnerable position. The connection between the hospital, the community, and the family is broken, leaving the caregiver to navigate complex medical needs without a safety net. The study suggests that to improve the quality of care and the safety of the patients, the training model must change. Instead of one-time instructions, caregivers need ongoing, standardized support that is easy to access. This includes a network where hospitals and community centers work together to provide regular check-ins, clear guidance on nutrition, and reliable services for tube replacement. Furthermore, the emotional and social needs of the caregivers must be addressed. By providing psychological support, creating opportunities for rest, and recognizing their professional role, the system can help these workers feel less isolated and more capable. The goal is to build a structure where the person caring for the tube is not left alone to figure it out, but is supported by a team that ensures both the patient and the caregiver can thrive.