The Pennsylvania Ventilator Assisted Children's Home Program (VACHP) has grown from an enrollment of two patients in 1979 to more than 225 patients per year and has served more than 900 patients over its 30-year history. It is a statewide program that coordinates the care of children at home on mechanical ventilation and advocates for the support of families in the community. Respite funds are offered to families so that they may enjoy a reprieve from daily care on a regular basis. Professional training is provided to the nurses and therapists who practice in the home. Three expert teams, composed of advance practice nurses and social workers, divide a patient census of 240 patients across the state.
The mission is to provide the following:
- Guidelines and education regarding the transition of the child with chronic respiratory failure (CRF) from hospital to home;
- General oversight of the home care plan, including assurance of funding for adequate nursing care;
- Coordination of the child's multidisciplinary care;
- Advocacy for services and funding to meet the child's healthcare, developmental, and educational needs;
- Counseling and psychological support of the family, and advocacy for their basic social needs;
- Education of nurses, therapists, and physicians in the management of children with CRF at home.
The numbers of infants, children, and adolescents requiring prolonged mechanical ventilation at home continues to increase as advances in the care of critically ill infants and children evolve (Downes et al., 2007). By extrapolating the number of children in Pennsylvania who are at home on mechanical ventilation, an estimated 4,300 children in the United States are managed at home on mechanical ventilation (Downes & Boroughs, 2008). This home management is a dynamic process that requires communication among all caregivers, both professional and lay, with periodic collaborative reviews of treatment and care plans that will ensure that all goals for the patient are being met. Successful discharge of ventilator-dependent children from hospital to home can be traced to a smooth, collaborative effort by a skilled team of physicians, nurses, social workers, therapists, and family members (Lewarski & Gay, 2007). It is remarkable that most families are [then] left on their own to procure community resources. Parents must assume the complex roles of caregiver, advocate, activist, educator, and case manager who all give rise to extraordinary physical, emotional, and financial strains (Carnevale et al., 2006). To support parents in these roles and help them to develop a sense of hope and competence, attention must be directed to the family's strengths and goals. A strengthen perspective creates a partnership designed to shape life beyond problems and focus on family's abilities, capacities, and aspirations (Weick, et al., 2006).
Despite frequent overwhelming challenges, most families are able to maintain a safe and enriching life for the child if they are supported in the home by a multidisciplinary team (MDT); however, the constancy of care may lead to an array of negative effects on a family including fear, frustration, fatigue, isolation, and depression as they struggle to coordinate and provide the care of the child on their own. The same need for advocacy, coordination of care, and communication the family experienced in the hospital is equally important to the family in the community. This need is demonstrated by the case of T.C. and her need for VACHP's care coordination.
T.C. was the eighth child born to her parents and was delivered at 29 weeks gestation, weighing less than 2 pounds. T.C. required intubation and mechanical ventilation, and was diagnosed with myleomeningocele with Arnold-Chiari Type II malformation and hydrocephalus. During T.C.'s almost 2-year hospital stay her parents visited often, but had difficulty learning her care in order to be able to manage her at home. Further complicating the training during this time, T.C.'s mother gave birth to their ninth child. Eventually, both parents completed the training program and took T.C. home just before her second birthday.
At the time of discharge from the hospital, T.C. received 20 hours of positive pressure ventilation per day and was fed through a gastrostomy tube. Unfortunately, her father lost his job, and T.C.'s mother developed chronic asthma and was unable to work. T.C.'s family faced mounting financial challenges in caring for their nine children. They relied upon government assistance for housing, food stamps, and medical assistance.
VACHP became involved with T.C. when her family moved to Pennsylvania when she was 6 years old. T.C.'s new primary care pediatrician discovered that the family urgently needed a coordinated plan of care in the community. He outlined the following issues:
- Questionable compliance with medical treatments at home;
- Lack of communication by the family with healthcare providers, the medical supply company, the nursing agency, and the educational system;
- Multiple missed appointments;
- Lack of a therapy and educational program;
- Escalating negative behaviors by the siblings including truancy, delinquency, teen pregnancy, and substance abuse.
A VACHP team, consisting of a registered nurse and social worker, made a preliminary visit to the home as a first step in developing a coordinated plan of care. Once the healthcare, developmental, psychosocial, and educational needs were identified and prioritized by the pediatrician, nurse, and social worker, an MDT joined forces to develop a streamlined, patient-centered plan of care. The MDT included all the stakeholders, both professional and family.
MDT Healthcare Interventions
T.C.'s home nursing chart contained no recent physician orders or nursing notes that reflected T.C.'s current health status. There was no home care nurse present at the time of VACHP's visit. T.C. had not visited a pulmonary specialist for more than a year and she missed several appointments with her pediatrician. Although the family reported that T.C. was using the ventilator at night, the respiratory equipment was covered in dust and the ventilator had no tubing attached. Boxes of unopened supplies were packed away in her room. The MDT prioritized the necessary healthcare interventions:
- Contact the medical supply company to determine current physician orders for ventilator settings and request an evaluation of patient compliance.
- Contact the primary care physician and the pulmonologist to discuss T.C.'s medical status and determine the medical treatment plan.
- Schedule new appointments and have VACHP staff accompany T.C. and her parents to the appointments.
- Contact the nursing agency and request a supervisory home visit.
- Help the family select a reliable medical supply and respiratory service company who would monitor the operation of the ventilator, the child's respiratory status, and equipment needs.
MDT Respiratory Therapy Interventions
The new respiratory therapist arrived at the home to assess the equipment and respiratory treatment needs of T.C. and to confirm that the environment was safe for the necessary equipment. The home assessment included obtaining a patient history from the caregivers, checking ventilator settings and weaning protocols, identifying equipment and supplies currently in the home, and reviewing the physician's orders. The therapist determined the quantities of monthly supplies needed. A review of insurance coverage allowed the therapist to finalize the plan of care and present it to the parents. The results of the home assessment, visit, and proposed plans were communicated to the MDT. The MDT prioritized the necessary respiratory therapy interventions:
- Evaluate clinical competency of the caregivers, including administration of aerosol therapy, suctioning technique, use of resuscitation bag, emergency procedures, operation of ventilator, and clinical assessment.
- Obtain prescriptions and medical authorization for equipment and supplies.
- Schedule delivery and set up of equipment and training for family and nurses.
- Visit monthly to deliver supplies, monitor function and use of equipment, and perform respiratory assessment of T.C.
- Maintain phone contact as necessary.
MDT Psychosocial Interventions
The psychosocial assessment identified health and welfare needs in the areas of housing, employment, sibling issues, parenting skills, and healthcare. The family relied on government assistance for housing, food stamps, and medical assistance. The home was old and in need of major repairs and cleaning. The family was in arrears with the utility companies and had not applied for assistance programs offered by the companies. Five of T.C.'s older siblings exhibited escalating negative behaviors including truancy, delinquency, teen pregnancy, and substance abuse. It seemed that both parents were overwhelmed with providing consistent parenting and age appropriate activities to the children and caring for T.C.'s developmental special needs. Both parents were unemployed except for intermittent work for the father. T.C.'s mother had chronic asthma that led to hospitalization and permanent unemployment. The parents did not receive regular or preventive medical care. The MDT prioritized the necessary psychosocial interventions:
- Contact the local housing authority to assist with home repairs.
- Investigate job training and resume coaching opportunities for the father and make referral to CareerLink Services.
- Obtain financial assistance grants from community charitable and religious organizations.
- Partner with the Child Protective Services to provide the family with counseling, support services in the home, and behavior management therapy for the children.
- Refer mother for asthma prevention education and supply list of primary physicians to the family.
MDT Educational Interventions
T.C. had not received educational services since her homebound early intervention ceased. The primary care physician and previous therapists believed that T.C. would benefit more from center-based education than a homebound program. She was registered to start school; however, her family decided it would be easier to receive homebound educational services. These services were never scheduled by the family. The MDT prioritized the necessary educational interventions:
- Meet jointly with the Child Protective Services social worker and the family to discuss the benefits of a center-based program, the supports necessary for a successful educational plan, and the possible challenges the family may face in addressing her educational needs.
- Contact the school district and request Child Protective Services to assist with school registration.
- Support the family's efforts to arrange transportation for T.C. to and from school.
MDT Developmental Interventions
During the home visit, the VACHP team discovered that T.C. spent most of her time in her high chair. This limited her mobility and provided little stimulation. She had received no therapies since age 2 and the family could not recall at what age T.C. reached developmental milestones. The MDT prioritized the necessary developmental interventions:
- Discuss with the parents the importance of providing T.C. with appropriate toys and activities and interaction with other children.
- Assure that physical, occupational, and speech therapies are included in the developmental plan once school is initiated.
- Confirm that Child Protective Services continue to monitor the family's progress in meeting T.C.'s developmental needs.
Ultimately, at age 7, the physicians determined that T.C. was ready to be liberated from mechanical ventilation, and her tracheostomy tube was successfully removed. Respiratory therapy services evaluated her pulmonary status weekly during home visits the following month. At the end of the month, with mechanical ventilation no longer required, the nursing agency and respiratory company closed the case. Child Protective Services remained in place to monitor and assess the family's progress during the following year. The following fall, T.C. was enrolled in a center-based educational program where she received therapies. In a short period of time, T.C. began to ambulate and enjoyed a rapid progression of her motor and language skills. T.C.'s father entered a job-training program and her mother received preventive care for her asthma. Their financial status improved with the help of assistance programs. The family was assisted in enrolling in a budget program with the gas and electric companies. Eventually, the family moved to a newer home located near family members who could offer support.
A single professional discipline could not have succeeded in supporting T.C. and her family in a manner that would result in a safe home environment and an enriching lifestyle for the family. The collaboration of a professional team was needed to meet the complicated needs of the family. In the case of T.C., the collaboration between the MDT and the family led to a successful plan of care and a mutual sense of accomplishment.
VACHP acknowledgments: John J. Downes, MD, Medical Director; Lisa Gagen, MSW, Social Worker; Gwen Harcar, LSW, Social Worker; Debbie Heinecke, MSN, Nurse Coordinator; Zoe Ann Kinney, BSN, Nurse Coordinator; Kelly Rice, MSW, Social Worker.
PRO2 Respiratory Services: Mary Brawner, BA, RRT.
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