Family-Centered AAC Services in Inpatient Medical Settings

Jessica Gormley

12/22/2017 7:15 PM

As mentioned in the previous post (https://communicationmatrix.org/Community/Posts/Content/11853), pediatric hospitals are mandated by a variety of accrediting organizations to deliver services that meet the unique communication needs of all patients; thus, clinicians are implored to use the 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 AAC Services

Practitioners who implement family-centered services assume that (a) parents are experts of their children. (b) parents seek the best for their children, (c) each family is unique, and (d) optimal child outcomes emerge within a supportive community context (King et al., 2004). When these assumptions are upheld, practitioners can then deliver the core principles of family-centered services outlined in King and colleagues (2004):

• shared decision-making power among parents and providers,
• parent-provider collaboration and partnership,
• a strengths-based approach to service provision,
• information sharing on the child’s condition and treatment options,
• mutual respect,
• supportive acceptance of family choices, and
• family empowerment.

In pediatric health care settings, 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). In a variety of settings, these services are also linked to increased perceptions of family self-efficacy, increased family empowerment, and improved child behavior and functional outcomes (Dunst, Trivette, & Hamby, 2007). Unfortunately, these practices may not be consistently implemented in pediatric rehabilitation (King, Williams, & Goldberg, 2017) or in AAC service delivery (e.g., Mandak & Light, 2017). Often, a child-focused approach or clinician-directed approach to services are implemented with the needs of the family “overshadowed” (King et al., 2017).

Family-Centered AAC Tools and Clinical Practice Suggestions:

To promote the 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. Within this article, practitioners can learn more about family-centered services as well as AAC assessment and intervention tools that support family-centered clinical practices. A streamlined view of these principles, tools, and clinical practices can be found by clicking the following link: http://aac.psu.edu/wp-content/uploads/2016/11/ASHA2016_FamilySystemsFramework_MandakONeillLight.pdf. 

For up-to-date research alerts in the area of family-centered AAC research, feel free to check out the “Family-Centered AAC Research” facebook page at https://www.facebook.com/familycenteredAAC/

Family-Centered AAC Services in Inpatient Medical Settings:

The Family System and Inpatient Medical Settings:

To deliver effective family-centered services and evaluate communication effectiveness within a healthcare environment, one must first recognize the child as a single element within a broader family context. As such, family systems theorists propose wholism, or the concept that the family can only be fully understood when viewed as a “complex, integrated whole” (Minuchin, 1988, p.8). When any element of the family is considered out of its context (e.g., focusing solely on a child’s communication with a health care provider without simultaneously considering the parent’s role in the communication process) an “incomplete picture” that cannot give adequate information for care may result (Minuchin, 1985). Furthermore, due to the complexity and interconnected nature of the family system, interdependence, or the inextricable link of family members within the broad family system (Minuchin, 1985), suggests that a change experienced by one family member reverberates throughout the entire system and subsequently affects all members (Minuchin, 1985). 

Within a family system, individuals are affected by the dynamic interplay of personal relationships, or subsystems (e.g., child-parent; Minuchin, 1985). Within each subsystem, interactional patterns among family members which form bidirectional feedback loops of behaviors emerge during communicative exchanges over time. (Minuchin, 1985). However, Minuchin (1985) also indicated that identification of such communicative patterns may be a helpful first step in a therapeutic setting to serve as a “point of entry” for future intervention.  

Clinical Example: A young child who recently sustained a traumatic brain injury and is no longer is able to communicate using speech may vocalize “ba ba” to indicate he needs to use the bathroom. However, his mother does not understand this vocalization and instead offers the child a ball. The child then starts screaming in frustration and hits the ball which, in turn, the mother yells “Why can’t you just talk! I don’t know what you want!” In future interactions, this pattern of negative verbalizations and challenging behavior may continually emerge when the pair experiences communication breakdowns. A speech-language pathologist may recognize the negative communicative pattern emerging between the young child and his mother and offer the child an AAC system comprised of pictures of items within the room, including “bathroom.” Now the child can point to the picture when he says “ba ba” and the mother can recognize this communicative act as a request to use the bathroom, thus breaking the cycle and improving the communicative exchange. 

When considering a child’s participation within the rehabilitation experience, service providers and researchers alike must move towards better understanding the factors within health care that affect the entire family unit and not solely focus on the child. Just as the child is a single element within a complex family system; a family is a single element that is embedded within a set of larger systems such as a health care or education system (Bronfenbrenner, 1979). Factors such as social policies governing relational networks (e.g., hospital staffing) and socio-cultural beliefs also drastically affect individuals in the family system and health care system (Bronfenbrenner & Ceci, 1994). A child must be considered within this broad, complex, interconnected, and dynamic context (Bronfenbrenner & Ceci, 1994), first starting with the family system and extending to the larger health care context (Minuchian, 1985; King et al., 2004).
 
For a brief outline of a variety of systemic factors affecting the delivery of services to individuals with complex communication needs in the inpatient rehabilitation setting, check out: https://rerc-aac.psu.edu/wp-content/uploads/2017/11/Gormley_Online-Focus-Group-AAC-and-Inpatient-Rehab_ASHA2017_.pdf

Parents as “Interpreters”

Although, the relational dynamics among all involved parties – children, families, and providers – critically impact the rehabilitation experience as well as family and child outcomes (Dunst, Trivette, & Hamby, 2007; King et al., 2017), these dynamics are not well understood when a child with complex communication needs is involved (Hemsley & Balandin, 2014). However, qualitative evidence has emerged that parents often serve as “interpreters” of their child’s communicative acts in the hospital setting when the child has a severe communication disability (e.g., Hemsley, Kuek, Bastock, Scarinci, & Davidson, 2013). When parents assume this role in the hospital setting, they can support health care providers to more effectively and efficiently communicate with the child. 

Clinical Example: When a nurse is attempting to feed a two-year-old girl with cerebral palsy, the girl’s mother may educate the nurse that when her daughter vocalizes, looks away, and extends her arm forward, this is a signal for “stop.” With this new knowledge, the nurse can pause before placing additional food into the child’s mouth and reduce the child’s discomfort during feeding. In this example, the nurse including the mother in the feeding session, acknowledging the child’s mother as an expert of the child, and respecting the child’s nonverbal communicative act is a demonstration of a family-centered AAC service (Mandak, O’Neill, Light, & Fosco, 2017).

Key Research Findings:

• Family-centered services are key to effective AAC service delivery (Mandak, O’Neill, Light, & Fosco, 2017).
• Families must be informed of the AAC process (Parette et al., 2000), set shared goals with AAC professionals (Cress, 2004), be treated with dignity and respect, and participate in information sharing tasks for informed decision making (Mandak et al., 2017)
• Family-professional partnership is essential to balance present and future AAC needs (Beukelman & McNaughton, 2010) which is can be especially critical for discharge planning and connecting families to resources following discharge from the hospital. Parents are accurate and thorough observers of their children, although they may not communicate their observations as professionals do; thus, creation of parent-professional alliances are vital to delivering AAC services to young children (Cress, 2004).

Recommendations:

• Participate in shared goal setting activities and determine the family’s expectations of an AAC system in the hospital and home early in the stay (Cress, 20
• Directly ask family members to be part of therapy sessions within the hospital to (a) identify communicative strengths within the family unit, (b) identify communicative patterns within the family that could be improved in future intervention, and (c) inform the vocabulary selection process
• Involve the family during decision-making within the inpatient stay and when preparing for discharge (Beukelman & Ray, 2010)
  

References:

Beukelman, D., & Ray., P. (2010). Communication supports in pediatric rehabilitation. Journal of Pediatric Rehabilitation: An Interdisciplinary Approach, 3, 279-288

Bronfenbrenner, U. (1979). The ecology of human development: Experiments in nature and design. Cambridge, MA: Harvard University Press

Bronfenbrenner, U., & Ceci, S. (1994). Nature-nurture reconceptualized: a bioecological model.Psychological Review, 101, 568-586.

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

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.

Cress, C. J. (2004). Augmentative and alternative communication and language: Understanding and responding to parents' perspectives. Topics in language disorders, 24, 51-61.

Dunst, C.J., Trivette, C.M., & Hamby, D.W. (2007). Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13. 370-378.

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. 

Hemsley, B., Kuek, M., Bastock, K., Scarinci, N., & Davidson, B. (2013). Parents and children with cerebral palsy discuss communication needs in hospital. Developmental Rehabilitation, 16, 363-374. 

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, 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., & Light, J. (2017). Family-centered services for children with ASD and limited speech: The experiences of parents and speech-language pathologists. Journal of Autism and Developmental Disorders. Advanced Online Publication.

Mandak, K., O’Neill, T., Light, J. (2016, November). Bridging the gap from values to actions: A family systems framework for family-centered AAC early-intervention services. Poster presented at the Annual Conference of the American Speech-Language Hearing Association, Philadelphia, PA.

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.

McNaughton, D., & Beukelman, D. (2010). Transition strategies for adolescents and young adults who use AAC. Baltimore, MD: Paul H. Brooks.

Minuchin, P. (1985). Families and individual development: Provocations from the field of family therapy. Child Development, 56, 289-302.

Minuchin, P. (1988). Relationships within the family: A systems perspective on development. In Hinde, R.A. & Stevenson-Hinde, J. (Eds.), Relationships within families: Mutual influences (p. 7-26). Oxford: Clarendon.

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.

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