Early Feeding Intervention: Transitioning From Acute Care to Early Intervention Nolan and Terrence are 4-month-old twins referred for an outpatient modified barium swallow. Their family’s experience after discharge from the hospital offers a compelling example of the critical nature of communication between acute-care clinicians and community-based clinicians when working with families transitioning from acute care to early intervention services. The ... Features
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Features  |   June 01, 2010
Early Feeding Intervention: Transitioning From Acute Care to Early Intervention
Author Notes
  • Kelly VanDahm, MS, CCC-SLP, is a speech-language pathologist at Cardon Children’s Medical Center in Mesa, Ariz. Contact her at kvandahm@hotmail.com.
    Kelly VanDahm, MS, CCC-SLP, is a speech-language pathologist at Cardon Children’s Medical Center in Mesa, Ariz. Contact her at kvandahm@hotmail.com.×
Article Information
Swallowing, Dysphagia & Feeding Disorders / Special Populations / Early Identification & Intervention / Features
Features   |   June 01, 2010
Early Feeding Intervention: Transitioning From Acute Care to Early Intervention
The ASHA Leader, June 2010, Vol. 15, 12-14. doi:10.1044/leader.FTR1.15072010.12
The ASHA Leader, June 2010, Vol. 15, 12-14. doi:10.1044/leader.FTR1.15072010.12
Nolan and Terrence are 4-month-old twins referred for an outpatient modified barium swallow. Their family’s experience after discharge from the hospital offers a compelling example of the critical nature of communication between acute-care clinicians and community-based clinicians when working with families transitioning from acute care to early intervention services.
The twins’ mom had been concerned about their eating since taking them home from the hospital. She reported that they coughed during and after feedings, had constant underlying congestion, and occasionally refused to eat. After multiple emergency room and urgent care visits, the boys’ pediatrician referred them for swallow studies. During the study, the speech-language pathologist observed that Nolan had difficulty getting his head into a midline position and had atypical skull-shape molding. Terrence was less restricted, but the beginning phases of head-shape changes were obvious. The results of the swallow study confirmed silent aspiration for both infants. Each baby, however, required a different thickness consistency for safe oral intake. Outpatient feeding therapy, a physical therapy evaluation, and a pediatric gastro-intestinal consult were recommended.
The pediatrician referred the infants for feeding therapy only. At the first feeding therapy appointment, it was clear that the twins’ mom was struggling—with different recipes for consistencies, continued emesis, intermittent food refusal, and Nolan’s limited cervical mobility. She reported high stress levels, lack of sleep, and anxiety about inadvertently feeding the boys the wrong formula. She also was upset by the physician’s refusal to refer to pediatric gastroenterology or physical therapy.
The outpatient SLP was in a unique position to support this family. She helped the mom transition to a more practical feeding routine and helped advocate for the addition of physical therapy and pediatric gastroenterology services. With these additional services, the boys demonstrated improved reflux management and age-appropriate physical movement—changes that helped improve the quality of feedings and supported the success of feeding therapy interventions.
Feeding problems within the pediatric population are well documented. The incidence of feeding issues among typically developing children ranges from 25% to 40% and has been shown to rise to as high as 85% among children with developmental disabilities (Bernard-Bonnin, 2006; Manikam & Perman, 2000). Medical histories among children with feeding difficulties often include prematurity, recurrent respiratory infections, bronchiolitis and pneumonias, reflux, failure to thrive, cerebral palsy, and tracheostomy (Field, Garland, & Williams, 2003; Rogers, 2004; Rudolph, 1994; Thoyre, 2007). Many of these underlying issues can result in an acute onset of a feeding disorder or later development of feeding difficulties.
When a child is hospitalized and receives a diagnosis of dysphagia, aspiration, or feeding disorder, the family must take a new direction. Family mealtime routines or usual foods may no longer be appropriate or safe for a child with a feeding disorder. Families may need to make changes to schedules, habits, and choices to accommodate their child’s needs. SLPs play a critical role in working with these children and their families before and after discharge from acute care as they support the family’s adjustment, implement recommendations, and monitor the child’s progress.
Role of Acute-Care Clinicians
In an acute-care setting, children with feeding difficulties receive clinical evaluations of feeding and swallowing that may vary greatly depending on the medical stability of the child. A bedside evaluation is used routinely to monitor progress and medical changes. When aspiration is suspected, a modified barium swallow study (MBS) or fiberoptic endoscopic evaluation of swallowing (FEES) is completed. It is important to note that these evaluations have a dual purpose: to identify or negate the presence of penetration or aspiration, and to identify an appropriate means of intervention to support safer feeding.
The evaluation results and the subsequent recommendations by the acute-care clinicians form the foundation for home follow-up. Typically an interdisciplinary team evaluates and provides therapeutic interventions to support the child’s progress. The team may include the child’s physician to monitor overall health status, a dietitian to help the family with the child’s nutritional needs, an SLP to address feeding and swallowing issues, and an occupational therapist to address sensory and fine motor issues. The recommendations may include new feeding techniques and meal preparation methods that families will need to adopt, such as feeding the child in a different position or using specific utensils or systems.
While the child is hospitalized, the family can turn to the members of the interdisciplinary team and the nursing staff for support and education and, when indicated, to provide recommended interventions. Predictably, discharge to home can be overwhelming for the family, who are then without this on-site support.
Parents receive a great deal of information in the hospital, especially in the days or hours prior to discharge. They may learn about the disease process, diagnoses and terminology, instructions for post-discharge care, follow-up appointments, medication administration, and more. Many parents are able to verbalize and demonstrate competence in using these new techniques and interventions during the acute phase; once home, however, without interdisciplinary professional support and relief, information can be forgotten or confused and parents can become anxious and stressed.
Acute-care clinicians can help ease the family’s transition by considering the following strategies:
  • Talk with the family to determine what types of support are available and also what limitations need to be considered. Single parenthood, limited income, multiple caregivers, work schedule restrictions, and transportation needs all can affect the family’s ability to follow discharge recommendations.

  • Provide information about the family’s resources and barriers to the other members of the inter-disciplinary acute-care team to facilitate a more functional discharge plan that has more potential for success.

  • Provide the family with written instructions and discharge documentation that can be given to follow-up clinicians, who will then have direct access to acute-care reports about concerns, plans of care, and discharge recommendations.

  • Give families contact information for the acute-care clinician for any questions they may have, or provide contact information to the community-based clinicians for further discussion.

Role of Community-Based Clinicians
For clinicians who assume the therapeutic care of these children upon discharge, a thorough review of discharge summaries is critical to a successful transition. As often as possible, clinicians should encourage parents to obtain and refer to written discharge summaries from physicians, specialists, and inpatient therapists. Even with written recommendations and instructions, parents will benefit from careful guidance.
The community-based clinician who is assuming care needs to:
  • Understand what information was provided to the parents and what information the parents recall or believe to be true.

  • Help parents work through feelings of guilt and denial while supporting the role of the family and emphasizing the need to carry out the recommendations.

  • Collaborate with parents to create an appropriate care plan and an Individualized Family Service Plan (IFSP) for preschoolers or an Individualized Education Program (IEP) for school-aged children.

  • Facilitate communication with the medical team (Kane Miller, 2009) by sharing information with the acute-care clinician, especially if the child remains medically fragile.

Bridging the Gap for Early Intervention
In the face of budget cutbacks for intervention services provided by state agencies, many parents may experience a delay in service provision or receive fewer services than recommended. Early intervention (EI) and community-based clinicians will need to be creative and collaborate with schools, outpatient clinics, specialists, and other local services to find creative ways to provide access to needed services (Lefton-Greif & Arvedson, 2008). Clinicians have several options for families facing delays: guiding them to outpatient clinics for services until home-based services are available; providing information about university clinics that may offer sliding fee schedules; working with physical or occupational therapists who are providing services to provide supportive feeding therapy; or providing group intervention. Facilitating family follow-through with home programs and specialist appointments also is critical to supporting progress for these children.
The SLP working in an EI program may serve as a case manager; in a recent poll of dysphagia treatment providers, it was common for SLPs to function as case managers for families of children with feeding issues (Barkmeier-Kraemer, 2009). Encouraging parents to go to appointments, coordinating the information flow, and helping parents to process specialists’ information are vital to supporting the child’s progress. Direct communication among professionals helps avoid conflicting information. In an informal poll of parents regarding discussion of potential developmental delays, parents described communication between professionals conducted through parents as more confusing and frustrating than direct communication between professionals (Sices, Egbert, & Mercer, 2009).
Many families have difficulty recognizing the key role of medical stability in facilitating progress. Children who are sick or recovering may need a pause in related treatments until their health improves. SLPs in EI must have a good understanding of medical diagnoses so they can help parents recognize medical stability, changes that may interrupt therapies, and the need for further medical evaluation. Progress in feeding treatment can be difficult when an underlying medical issue changes or needs further resolution.
Emotional Support for Families
Even with written documentation and in-home support from clinicians, many parents remain confused and overwhelmed. As families realize the extent of their child’s needs, many parents feel isolated and believe that they are the only ones who can feed their child safely (Dahl, 1987; Dahl & Sundelin, 1987, 1992). Clinicians who recognize the strain on the entire family will be in a better position to provide a more appropriate plan of care; encouraging open communication with the family aids the treatment process.
In Arizona, a few mothers of children with feeding disorders decided to work together to support other parents. They created P.O.P.S.I.C.L.E. (Parent Organized Partnerships Supporting Infants and Children Learning to Eat), with the mission to provide “help and hope when children struggle to eat.” The organization provides education using the interdisciplinary expertise of feeding and swallowing experts across the nation. Equally important is a second goal: to offer support, encouragement, and a “buddy system” for other parents throughout the United States. Parents can talk to another parent who has gone through the process in an effort to alleviate feelings of isolation and gain from the experiences of other parents.
The transition from an acute dysphagia diagnosis to early intervention can be a difficult process. But clinicians in both settings—community-based early intervention and acute care—who are well-versed in medical terminology, diagnoses, and collaborative work with other clinicians and specialists within their community can optimally support both the family and the child as they incorporate new challenges and routines into their daily lives.
References
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June 2010
Volume 15, Issue 7