AAC Services for Children in Inpatient Medical Settings

Jessica Gormley

12/19/2017 10:48 PM

Many children with severe communication disabilities rely on alternative and augmentative communication (AAC) strategies (i.e., any method of communication other than oral speech) to communicate with health care personnel during inpatient hospital stays. However, frequent communication breakdowns with staff and limited access to communication supports place these children at increased risk for negative experiences and poor health outcomes (Blackstone, Beukelman, & Yorkston, 2015; Zubow & Hurtig, 2013). Individuals with complex communication needs are at three times more risk of experiencing preventable adverse medical events when in the hospital (Bartlett, 2008). Examples of such events range from adverse medication reactions, patient falls, and pressure ulcers (Hurtig & Alper, 2016).  

During a recent investigation, Zubow and Hurtig (2013) reported that a third of conscious adults and children in intensive care units at a large tertiary health care system (a) were unable to access a nurse call system to request assistance and (b) could not speak due to mechanical intubation. The authors only included individuals who were AAC or assistive technology (AT) candidates for the first time. Patients who required AAC support prior to the inpatient stay and individuals who sustained a recent stroke or traumatic brain injury were excluded (Zubow & Hurtig, 2013). Therefore, it is reasonable to infer that one third represents a low estimate of all individuals who experience severe communication challenges in the hospital setting.
In addition to limited access to AAC/AT tools in the hospital, time constraints and limited staff communicative competence also have been identified as barriers to supporting the communication needs and participation of children with complex communication needs and their families in hospitals (Gormley & Light, 2017; Hemsley & Balandin, 2014). In a recent online focus group of speech-language pathologists (SLPs) who provided services within inpatient rehabilitation facilities, participants reported that time constraints limited the quality and quantity of services addressing communication needs (Gormley & Light, 2017). Examples included short lengths of hospital stays for patients, high productivity expectations for providers, and limited time for providers to program, trial, and customize AAC systems (Gormley & Light, 2017). Further complicating the situation, many health care professionals, including SLPs who are often regarded as “leaders” of AAC teams, report minimal training in pre-service AAC training (Burns et al., 2017; Costigan & Light, 2010) and/or in-service AAC training (Gormley & Light, 2017).
 
Family-Centered AAC Services to Improve Child and Family Outcomes in Medical Settings

Pediatric hospitals are mandated to provide services that meet the unique needs of all patients, including those with a severe communication disability (Commission of Accreditation of Rehabilitation Facilities, 2016; The Joint Commission, 2010). To achieve this mandate, pediatric hospitals should incorporate best practice recommendations of delivering family-centered services when caring for a child with complex medical and communication needs (Commission of Accreditation of Rehabilitation Facilities, 2016; Cox et al., 2017; King, Teplicky, King, & Rosenbaum, 2004; The Joint Commission, 2010). Family-centered services are comprised of a set of attitudes that assume (a) parents are experts of their children and desire the best for their children, (b) each family is unique, and (c) optimal child and family functioning occurs within a supportive community context (King et al., 2004a). These assumptions translate to practice when professionals consider families’ strengths and needs, treat families with dignity and respect, provide information to families to allow for informed decisions about their child’s care, and partner with families to share decision-making power (King et al., 2004; King, King, & Rosenbaum, 2004; Dunst, 2002). Unfortunately, these assumptions may not consistently be implemented in practice (King, Williams, & Goldberg, 2017). As King, and colleagues (2017, p.2) aptly stated, “despite widespread endorsement of family-centered care, the needs of parents of children with disabilities can be overshadowed by a focus on direct services for the child.” 

In health care settings, such as pediatric hospitals, past investigations suggest that implementation of family-centered services contributes to increased parental satisfaction with rehabilitation services and increased psychosocial outcomes of both parents and children (King, King, Rosenbaum, 1996; King, Law, King, & Rosenbaum, 1998; Rosenbaum et al., 1998). To promote implementation of family-centered AAC practices, Mandak, O’Neill, Light, and Fosco (2017) presented a framework that can support providers to deliver these essential services. This framework as well as general practice suggestions for AAC providers in medical settings can be found in the next post of this collection. 

AAC Supports and Resources within Inpatient Medical Settings

Despite the many barriers to implementing AAC services, a growing body of research suggests that use of AAC supports can improve the experiences of children with complex communication needs and their families in medical settings (Costello, Santiago, & Blackstone, 2015). An inpatient hospital stay can be a frightening for an individual of any age; however, “children are not small adults” (Costello et al., 2015, p. 190) and they experience stress differently than adults. As such, children can benefit from (a) health care providers who understand how children experience illness, pain, and hospitalization in various developmental stages (Costello et al. 2015) and (b) access to communication supports that aid in both comprehension and expression of these developmentally appropriate concepts. 

Gaynard and colleagues (1990) recommended that, to reduce child stress in hospital settings, health care providers should use strategies to support (a) the child’s sense of control and (b) the child’s developmentally-appropriate and active participation in daily care. Offering high- or low-tech AAC supports to children with complex communication needs within the hospital setting may be one way to increase the child’s sense of control and age-appropriate, active participation in their stay by providing a means to solicit attention and/or comfort, express medical and physical needs, communicate emotional states and pain, ask questions, and accept or decline medical procedures (Costello, Patak, & Pritchard, 2010). The final post of this collection outlines recommendations and available AAC resources that can be used to support children with complex communication needs, their families, and health care providers within the inpatient environment.
 
References:
Bartlett, G., Blais, R., Tamblyn, R., Clermont, R.J., & MacGibbon, B. (2008). Impact of patient communication problems on the risk of preventable adverse events in acute care settings. Canadian Medical Association Journal, 179, 1555-1562. 

Blackstone, S.W., Beukelman, D.R., & Yorkston, K.M. (eds.). (2015). Patient-provider communication: Roles for speech-language pathologists and other health care professionals. San Diego, CA: Plural Publishing Inc.

Burns, M., Baylor, C., & Yorkston, K. (2017). Patient-provider communication training for dysarthria: Lessons learned from student trainees. Seminars in Speech & Language Disorders, 38, 229-238. 

Commission of Accreditation of Rehabilitation Facilities. (2016). 2016 health care rehabilitation Program descriptions. CARF International. Retrieved October 17, 2017, from: http://www.carf.org/ Programs/Health care

Costello, J.M., Patak, L., & Pritchard, J. (2010). Communication vulnerable patients in the pediatric ICU: Enhancing care through augmentative and alternative communication. Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach, 3, 289-301.

Costello, J.M., Santiago, R.M., & Blackstone, S.W. (2015). Pediatric acute and intensive care in hospitals. In S.W. Blackstone, D.R. Beukelman, & K.M. Yorkston (Eds.), Patient provider communication: Roles of speech-language pathologists and other health care providers (pp. 187–224). San Diego, CA: Plural Publishing Inc.

Costigan, A., & Light, J. (2010). Effect of Seated Position on Upper-Extremity Access to Augmentative Communication for Children With Cerebral Palsy: Preliminary Investigation. American Journal of Occupational Therapy, 64, 596–604. 

Cox, E.D., Jacobsen, G.C., Rajamanickam, V.P., Carayon, P., Kelly, M.M., Wetterneck, T.B., Rathouz, P.J., & Brown, R.L. (2017). A family-centered rounds checklist, family engagement, and patient safety: A randomized trial. Pediatrics, 139, early online.

Dunst, C. (2002). Family-centered practices: Birth through high school. The Journal of Special Education, 36, 141-149.

Gaynard, J., Wolfer, J., Goldberger, R., Thompson, L., Redburn, L., & Laidley, L. (1990). Psychosocial care of children in hospitals: A clinical practice manual from the ACCH child life research project. The Association for Care of Children’s Health. Maryland.

Gormley, J. , & Light, J. (2017, November). Complex communication needs in inpatient rehabilitation: Perspectives from online focus groups of SLPs. Poster presented at the Annual Conference of the American Speech-Language Hearing Association, Los Angeles, CA.

Hemsley, B., & Balandin, S. (2014). A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: Informing new translational research. Augmentative and Alternative Communication, 30, 329-343.
 
Hurtig, R.R., & Alper, R.M. (2016, November).  The impact of communication barriers on adverse events in hospitalized patients. Paper presented at the Annual Conference of the American Speech-Language Hearing Association, Philadelphia, PA.
 
The Joint Commission. (2010). Advancing effective communication, cultural competence, and
patient and family centered care: A roadmap for hospitals. Oakbrook Terrace, IL: The Joint Commission. Retrieved from http://www.jointcommissio.org/... RoadmapforHospitalsfinalversion 727.pdf

 King, S., King, G., & Rosenbaum, P. (1996). Interpersonal aspects of care-giving and client outcomes: A review of the literature. Ambulatory Child Health, 2, 151-160.

King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service delivery to children with chronic conditions and their families: Development of a refined measure of processes of care (MPOC-20). Children’s Health Care, 33, 35-57.

King, G., Law, M., King, S., & Rosenbaum, P. (1998). Parents’ and service providers’ perceptions of the family-centeredness of children’s rehabilitation services. Physical and Occupational Therapy in Pediatrics, 18, 21-40.

King, S., Teplicky, R., King, G., & Rosenbaum, P. (2004). Family-centered service for children with cerebral palsy and their families: A review of the literature. Seminars in Pediatric Neurology, 11, 78-86.

King, G., Williams, L., & Goldberg, S.H. (2017). Family-oriented services in pediatric rehabilitation: A scoping review and framework to promote parent and family wellness. Child: Care, Health, and Development, 43, 334-347.

Mandak, K., O’Neill, T., Light, J., & Fosco, G. M. (2017). Bridging the gap from values to actions: a family systems framework for family-centered AAC services. Augmentative and Alternative Communication, 33, 32-41.

Rosenbaum, P., King, S., Law, M., King, G., & Evans, J. (1998). Family-centered service: A conceptual framework and research review. Physical and Occupational Therapy in Pediatrics, 18, 1-20.

Zubow, L., & Hurtig, R. (2013). A demographic study of AAC/AT needs in hospitalized patients. Perspectives in AAC, 22, 79-90.

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