Ventilator-Assisted Living©

Spring 2000, Vol. 14, No. 1

ISSN 1066-534X

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Read selected articles from this issue ...

Home Care and Mechanical Ventilation for Children in Thailand
Aroonwan Preutthipan, MD, FCCP, Bangkok, Thailand

Finding a Ventilator in Sri Lanka
M. Hafiz Issadeen, Dharga Town, Sri Lanka

Oxygen is NOT for Hypoventilation in Neuromuscular Disease
E.A. Oppenheimer, MD, FCCP, Los Angeles, California

New Equipment, Masks, and Aids

Ventilator-Dependent Child Abandoned: Reactions

Potpourri: Noninvasive nasal ventilation in children with CCHS, study at Emery University;
The 1999 Buyer's Guide online;
www.VentWorld.com - ventilator equipment, information, news, event;
www.pierrerobin.org - for parents with children who have PRS


Home Care and Mechanical Ventilation for Children in Thailand

Aroonwan Preutthipan, MD, FCCP

In Thailand, the respiratory home care program for mechanically ventilated children was formally established at Ramathibodi Hospital in Bangkok in 1995. Before then, almost all ventilator-dependent children had to remain in the hospital for months or even years. Only a few children who had strong family support could be discharged home.

Our program has been organized with cooperation between the pediatric pulmonology and pediatric nursing divisions. The multidisciplinary team involved in the case management and case monitoring includes pediatric pulmonologists, respiratory nurses, ambulatory (visiting) nurses, and a secretary to coordinate equipment.

There are four pediatric pulmonologists (including myself) and four fellows in the division. Our responsibilities are to select suitable patients for home ventilation, provide medical treatment, find and select appropriate equipment, and plan for discharge and follow-up care. The hardest work for us is when we have a child whose medical condition is suitable for home care, but whose family lacks financial resources. As the leaders of the team, we spend a lot of time seeking possible financial support for them.

Respiratory therapists do not exist in Thailand. On our team, respiratory nurses take on that role. Their main responsibility is training the caregivers, a very hard job because the caregivers are not health professionals and do not have any previous knowledge about respiratory care. In addition, our nurses have to prepare all necessary equipment, such as suction, resuscitation bag, oxygen device, etc. They also carry beepers 24 hours a day so that whenever any problem occurs the family can call for help.

The ambulatory nurses (similar to visiting nurses or home health care nurses in the USA) are also instrumental to the program. They regularly visit the patient at home. After the child is discharged home, the ambulatory nurses contact the family by phone and visit the patient at home once or twice a week. They assess the capabilities of the caregivers, give feedback, and notify the hospital team of problems.

Since there is no medical equipment company that can provide a comprehensive set of respiratory home care equipment, our secretary is responsible for contacting sales representatives from different companies and asking for the necessary equipment. Her job is to collect all information on available equipment in the country and abroad, coordinate with equipment vendors, negotiate the price, and keep in touch with the families by phone, mail, or e-mail.

The organization of home care in Thailand differs from that in other countries in many ways. All expenses are directly borne by the family. Less expensive but safe mechanical ventilators are frequently used. Parents and relatives are the primary caregivers. The multidisciplinary team and the cooperation of the family are imperative for successful home care for mechanically ventilated children.

The major obstacle for home discharge is the lack of available funding. In Thailand, home care expenses are not covered by the government or insurance. The cost of equipment, supplies, and caregivers must be met by the family themselves. A number of patients whose conditions are suitable for home care still have to undergo long-term hospitalization unnecessarily because of the lack of family resources. The feasibility of home care depends very much on the family's resources and their ability to cope with ensuing problems.

Because the cost of home care is directly charged to the family, the caregivers almost always are non-medical professionals. Home care nurses are not practical in Thailand since the cost is too expensive for ordinary families. Generally, parents, relatives, or nannies are trained as primary caregivers of the child.

One advantage is the extended family setting most common in Thai society. With two or three generations living together in the same house, one family member is selected as the caregiver. Experience has taught us that the level of the caregiver's education is not as important as dedication. Training these devoted caregivers is another key to the success of our program.

Conventional home mechanical ventilators in Western countries are not generally available in Thailand. Some are obtainable but too expensive. Some patients are lucky enough to receive home mechanical ventilators donated by charitable organizations and well-to-do people in society. Most ventilator manufacturers do not have sales representatives in Thailand so that obtaining service after the sale is difficult. The choice of ventilator is determined mostly by the price and safety. We are obligated to adapt and use ventilators manufactured for other purposes for home use.

Most of the mechanical ventilators we use in the home do not have internal batteries, and we have modified an automobile battery and connected it to an adapter changing DC electric current to AC current. This battery can be used in case the electricity is shut down while the patient is being ventilated.

The first case in our home care program was a 15-year-old girl with poliomyelitis. She was the first case we tried using BiPAP® invasively via tracheostomy. She had been using BiPAP® in the hospital comfortably for more than one year before the Rotary Club donated BiPAP® for her use at home. We selected BiPAP® because the patient was satisfied with this ventilator and because the price was only half of the other conventional home ventilators. The sales representative in Thailand was helpful, and we trusted that service after the sale would be provided.

After the first case, we then tried BiPAP® on a 3-1/2-year-old boy with CCHS. We did not try to use a nasal mask because the boy also has mental retardation and could not cooperate. The parents were trained to connect BiPAP® to the tracheostomy when the child fell asleep, but because BiPAP® does not have enough alarms, we recommended that the family use a pulse oximeter at night for monitoring instead. The father was the primary caregiver for this child; the mother worked for a telephone organization which covered parts of the home care expenses. The child has used BiPAP® at night for more than four years now, and no serious complications have occurred.

From 1995 until now, there are 12 children on long-term ventilation discharged home under our supervision. Causes of ventilator dependence include congenital heart diseases, CCHS, SMA, diaphragmatic paralysis, congenital absence of hemidiaphragm, lung hypoplasia, poliomyelitis, sensorimotor neuropathy, and obstructive sleep apnea. Eight children have tracheostomies; four use noninvasive ventilation via nasal masks.

BiPAP® and CPAP units (Respironics Inc., Pittsburgh, Pennsylvania, USA) are the most common equipment we have been using. In our experience, these devices are effective in both non-invasive and invasive mechanical ventilation. They are durable and, more importantly, less expensive. In using these devices at home, no complications have occurred so far. Many of the children have shown remarkable improvement in their medical conditions and psychosocial development after discharge.

Home care for mechanically ventilated children will continue to grow in this region. Patient survival increases as a result of advanced technological life support in the hospital. More patients will survive acute life-threatening respiratory illnesses, thereby increasing the need for long-term ventilatory support. We hope that through our program this type of high technology home care will be made possible throughout the country in the future.

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