A Family Systems Approach to AAC Service-Delivery in the Inpatient Setting: Recommendations for Speech-Language Pathologists

Abstract

Purpose:

Family-centered care is necessary to deliver high-quality health care services. It is especially critical that family members are included in augmentative and alternative communication (AAC) service provision in the inpatient setting. AAC can be overwhelming to families and requires accommodations to effectively integrate into daily communicative interactions. Currently, there is minimal guidance for family-centered care by speech-language pathologists working with children with limited functional speech in the inpatient pediatric setting. The purpose of this clinical focus article is to apply principles from family systems theory to the inpatient pediatric setting to guide effective family-centered clinical practice and improve outcomes.

Method:

This paper describes a family systems framework to guide the development and use of supports to families during the extended hospitalization of a child with limited speech who may benefit from AAC in the inpatient rehabilitation setting. Two case studies are used to illustrate the application of a family systems approach in the pediatric inpatient setting.

Results:

Recommendations are provided for the inclusion of primary caregivers in service-delivery by speech-language pathologists in the inpatient hospital context. Clinical implications and future directions are discussed.

Conclusion:

The hospitalization of a child who uses AAC can be a stressful experience for the entire family system. By using a family systems framework, SLPs may improve AAC service-delivery outcomes by working collaboratively with family members and offering supports for both AAC implementation and general well-being. SLPs may also benefit from this approach to AAC service-delivery as families may be more actively engaged in sessions, leading to increased uptake of intervention strategies and AAC.

A significant increase in the number of children with complex health care needs hospitalized in the United States has been observed, with an average increase of 19.4% per year observed across a 14-year period (Burns et al., 2010). The hospitalization of a child can be an extremely stressful experience for families leading not only to deleterious immediate and long-term effects on a child’s physical, cognitive, and psychosocial health (post-intensive care syndrome – pediatrics [PICS-peds], Herrup et al., 2017) but also on the same domains in their family members (post-intensive care syndrome – family [PICS-family], Huggins et al., 2016). Children with developmental delays, neurodevelopmental disorders, and genetic syndromes are considered to have complex health care needs because specialized care is often needed; however, children with acquired disorders such a traumatic brain injury may also be seen for complex health care needs in the inpatient setting. These children are at substantial risk for severely limited speech and language delays; they frequently benefit from augmentative and alternative communication supports (AAC; Beukelman & Light, 2020).

AAC encompasses all nonspeech methods of communication including manual signs, picture symbols, photographs, or speech output devices (ASHA, 2016). AAC is critical for expressive and receptive language as well as for participation in society, healthcare, and education (Beukelman & Light, 2020). Children with complex health conditions often experience prolonged hospital stays that range from a few days (Sahiledengle et al., 2020) to several months at a time (Gormley & Light, 2021) with many children re-hospitalized over their lifetime. Children with limited functional speech who benefit from AAC may be at increased risk of experiencing preventable adverse events in health care that may be detrimental to their health, development, and well-being (Bartlett et al., 2008).

Individuals with limited speech experience substantial challenges communicating their needs effectively to health care providers in medical settings, such as the pediatric inpatient setting (Hemsley et al., 2001). This may be particularly problematic for children who use aided AAC as they may not be able to successfully convey their wants and needs or express themselves when they are in pain or discomfort. Additionally, many inpatient nurses and speech-language pathologists (SLPs) report insufficient training in assistive technology supports, such as AAC, to assist effective communication for those with limited speech (Gormley & Light, 2019; Simmons et al., 2021). Consequently, when young children with limited functional speech are hospitalized, caregivers reportedly feel the need to step in and communicate their child’s needs to professionals, such as SLPs (Phua et al., 2005). This can add to the stress experienced by families and inadvertently position the child as a passive participant in health care interactions. Consequently, when the child is a passive participant in medical encounters important information regarding their state of wellbeing may be lost as they are unable to share if they are in pain or discomfort. This could lead to adverse outcomes and challenges selecting appropriate treatment methods quickly. Additionally, if the child is not an active participant in conversations, they may be missing valuable opportunities to build language skills and self-advocacy skills. Yet, if given access to effective aided AAC, children are able to engage in necessary health care interactions (e.g., express pain or discomfort; understand healthcare directions). Critically, children with limited speech in the hospital should be provided with appropriate aided AAC to increase safety, well-being, and family communication.

SLPs play an important role in communication in the inpatient setting for these children with limited functional speech (ASHA, n.d.). The hospital can be a stressful and scary place for these children and their families and SLPs play an important role in providing access to communication supports, such as aided AAC (e.g., communication passport, rating scale, low-tech communication board, high-tech speech output system), as well as supporting continued use of any current AAC systems used prior to hospitalization (Santiago, 2024). As part of this role, SLPs in the inpatient setting may need to introduce aided and unaided AAC to the children and their family members and also educate other professionals (e.g., nurses) on strategies to support communication (e.g., expectant delay, model AAC). When hospitalized, children often have one caregiver residing with them in the inpatient setting for the duration of their stay.

Children with limited functional speech do not exist in a silo, but instead interact with many family members who play key roles in communication, development, and overall health. Of note, primary caregivers often feel under-supported in the inpatient setting (Berry et al., 2013) and report higher levels of dissatisfaction and increased stress (Phua et al., 2005). Additionally, caregivers of children who benefit from AAC report negative emotions during a child’s inpatient stay such as fear for their child’s safety, anxiety, pressure to provide nursing care, increased financial costs, and guilt over leaving their child’s side (Hemsley et al., 2013; Kuo et al., 2012). These factors may increase stress for caregivers which may in turn increase child anxiety and reduce overall family satisfaction (Camur & Karabudak, 2020). Caregiver-child interactions in the hospital are an important contributing factor towards child health and adjustment to treatment over time (Berger & Font, 2005); it is critical that family members are included in all AAC services to best support the child’s overall health and enrich parent-child behavioral interactions. Family-centered service-delivery offers an effective approach for including family members.

Family-centered service delivery includes practices and beliefs that regard and treat families with respect, promote inclusion, establish a basis for effective collaboration, and empower families (Dunst & Espe-Sherwindt, 2016). Family-centered services are individualized to the family, provide information for family members to make informed decisions, involve collaboration with family members, and deliver appropriate resources and supports to optimize outcomes (Dunst, 2002). Implementation of family-centered practice has been shown to improve child outcomes, empower parents/caregivers, enhance self-efficacy, and increase positive well-being in the family unit (Dunst et al., 2007). Despite discussion about family-centered service delivery in AAC (Cress, 2004) there has been a lack of recommendations tailored to support SLPs in the inpatient setting. Yet, for children with a variety of health conditions, effective family-centered care has been associated with lower emergency room visits, more stable child health, and lower severity of child difficulties (Kuo et al., 2012). Family-centered care also has impacts on professionals. For example, professionals report increased job satisfaction, and reduced stress and burnout (Park et al., 2018). Guidelines should be developed to improve service delivery outcomes within this context for the benefit of both health care providers as well as family members.

Although family-centered care is recognized as the standard of pediatric health care services (Kuo et al., 2012), SLPs working in the hospital context report many barriers to the provision of effective AAC family-centered care. Barriers include insufficient time, resources, training in AAC, lack of supportive communication access policies, and logistical issues coordinating caregiver-provider interactions throughout the hospital stay (Dickens et al., 2011; Gormley & Light, 2019). Furthermore, SLPs reportedly struggle with sharing general information with families because they think that families already know much of the information (Dickens et al., 2011; Gormley & Light, 2019). SLPs should be given the knowledge, tools, and strategies to overcome these barriers, protect against acting solely on assumptions, and provide truly family-centered care for improved child outcomes (Dunst et al., 2007).

Family systems theory provides guidance on how to deliver and enhance family-centered care in the hospital context. Limited guidance exists for the provision of effective family centered AAC services by SLPs in the inpatient context. This paper aims to address this gap by providing recommendations for the inclusion of caregivers in the provision of AAC services in the inpatient hospital context. Specifically, the goals of this paper are to: (1) describe and apply a family systems model to AAC service-delivery for children and their families in the inpatient setting; (2) provide evidence-based recommendations for SLPs to use to include caregivers and promote carryover into the home setting upon discharge, and (3) describe two case studies that illustrate the experience of individuals with limited functional speech and their family members in the hospital setting.

The Child in Context: Introduction to a Family Systems Model

Family systems theory (Minuchin, 1985) provides a theoretical framework that holds much promise for enhancing current family-centered care in the inpatient setting, particularly for supporting families of children who require AAC. While its roots are in family therapy (Minuchin, 1985), application of a family systems approach has recently advanced into other areas including theoretical models relevant to general AAC service-delivery (e.g., Coburn et al., 2021; Mandak et al., 2017). Mandak and colleagues (2017) provided a general framework for using key family systems principles (i.e., adaptation, wholism, homeostasis, and subsystems) to guide AAC family-centered care within an ecological framework with the child at the center. Coburn et al. (2021) proposed the implementation of self-created genograms when providing family-centered care from a family systems approach within an ecological framework. This technique encourages the person who uses AAC to draw a diagram that illustrates their family-systems. The current paper extends this prior work by applying family systems principles specifically to the pediatric inpatient context.

By definition, the family system consists of all individuals who decide to spend their lives together, whether bound by blood or marriage or not (Hanson & Lynch, 2013). Although the family system encompasses a wide family network (e.g., grandparents, siblings, aunts, etc.), the focus of much of the literature on family-centered health care services remains on outcomes related to pediatric patients and their parents (i.e., primary caregivers) thus the focus of this paper will present relevant research and clinical implications related to supporting these two key groups. Per family systems theory, the family is a closely intertwined dynamic system whose members are interdependent (Minuchin, 1985) meaning that changes affecting any member, such as the hospitalization of a child, will reverberate throughout the interconnected system and consequently affect all other family members in the system.

Families are increasingly diverse, and it is important that SLPs are prepared to understand and address the unique needs of each family system (Trost, 1990; Hanson & Lynch, 2013). Family systems theory provides a framework in which to do this. The family systems framework is made up of dynamic and interactive relationships amongst members (i.e., subsystems; McHale & Sullivan, 2008) that are impacted by principles that affect these relationships. This paper will focus on three subsystems within the family system framework and how they apply to children who use AAC and their families. The three subsystems include: (a) the co-parenting subsystem (i.e., the relationship between primary caregivers if more than one caregiver is within the family unit), (b) parent-child subsystem (i.e., primary caregiver-child relationship), and (c) extended family subsystem (e.g., aunt-child or grandparent-child relationship). See Figure 1 for an illustration. The concepts and impact of (a) adaptation (i.e., adjustment to change), (b) co-parenting (i.e., primary caregiving relationship if more than one caregiver is in the family system), (c) wholism (i.e., the family unit functions as an interconnected whole, where changes in one part of the system impact the entire system) and (d) family stress will be explored in this paper (see Table 1 for definitions). Implications for family-centered service provision will be discussed for each of these concepts (see Table 2 for a summary). Finally, family systems principles will be exemplified by two case examples used to illustrate recommendations for SLPs.

Figure 1. Family Subsystems Illustration.

Note. P1=parent/caregiver one, P2=parent/caregiver 2, C=child, SLP=speech-language pathologist, AAC= augmentative and alternative communication system. The interconnecting arrows represent the dynamic relationships between and within the subsystems. The permeable circles represent each subsystems interaction and distance from the home (i.e., primary family system)

Table 1.

Definitions of Family Systems Concepts

Concept	Definition	Hospital Context
Subsystem	Relationships with other members in the family system (McHale & Sullivan, 2008). Major subsystems addressed in this paper include:  Co-parenting subsystem (parent-parent)  Parent-child subsystem (parent-child)  Extended family subsystem (aunt-child)	Subsystem relationships may change in response to hospitalization of a child. Health care professionals, such as SLPs, may enter the extended family subsystem over time. Parent-child subsystem may predominantly be a single parent at a time.
Co-parenting	Division of labor, support, family management, and childrearing approach between parents who are responsible for jointly raising a child (Feinberg, 2003)	Co-parenting may look different in the hospital context due to the external demands of work and hospital regulations which allow only a single parent to stay. SLPs may need to adapt service-delivery to support co-parenting demands.
Adaptation	The capacity of a family system to change and re-establish equilibrium in response to external stimuli in order to continue functioning in a state of balance (Kim & Rose, 2014)	The family system is disrupted in location, routine, and communication patterns within the hospital context. Adaptation is crucial to family well-being.

Table 2.

Recommendations for Family-Centered Care in the Hospital Setting

Concept	Family-Centered Care	Strategies for Implementation
Subsystems	• Identify the family members and parents	• Informal interview • Social Networks Inventory (Blackstone & Hunt-Berg, 2012)
Family stress	• Serve the family as a whole not just the child with limited speech • Educate and empower parents • Establish common goals for service-delivery • Identify achievable activities for parents	• Provide informational handouts (King et al., 2017) • Train communication partners (Kent-Walsh et al., 2015) • Involve parents in goal-setting and give them roles in service-delivery (Lammi & Law, 2003)
Adaptation	• Support the family during hospitalization • Coordinate care with other disciplines • Check in on family well-being	• Utilize perspective taking (Blatt et al., 2010; Calvard et al., 2023) • Show compassion (Perez-Bret, et al., 2016) • Utilize active listening and structured questioning (LAFF; Mandak et al., 2020)
Co-parenting	• Work with the family unit to include co-parents • Ask co-parents what they need to be successful	• Provide telemedicine (Hyder & Razzak, 2020) • Give positive feedback • Create family-friendly progress and education notes in the electronic health record • Encourage family access to and use of the electronic health record

Family Subsystems

Dynamic and interactive relationships, called subsystems form amongst members of the family system (McHale & Sullivan, 2008). Subsystems can include: (a) the co-parenting subsystem, which typically consists of the relationship between the child’s primary caregivers, but may include other important adults who play a caregiving role in the home such as grandparents in a multigenerational home; (b) the parent-child subsystem, which describes the relationships between parents/caregivers and the child; and (c) the extended family subsystem, which is inclusive of those who play a role in caregiving but do not necessarily reside in the home with the child and may interact less frequently with the child than the co-parenting subsystem. Examples of extended family members include grandparents, aunts, uncles, close family friends, and neighbors. This is especially important to consider since, in the case of the hospitalization of a child, it is possible that extended family members may temporarily reside in the home and take on additional parenting responsibilities to support the co-parenting subsystem (e.g., driving siblings to/from school).

During a hospitalization, the entire family system is disrupted, pushed outside of the home environment, and forced to adapt their daily routines, communication, and interactions to the hospital setting. These changes can result in heightened care burdens as caregivers are forced to take time away from work and the home to stay by their child’s side (Kuo et al., 2012; Hemsley et al., 2013). Furthermore, hospital regulations typically limit the number of overnight guests with the child, meaning that only one parent may stay in the child’s room at a time (e.g., CHOP, 2022). This separation of the co-parenting subsystem (if more than one caregiver exists within the family unit) and parent-child subsystem may have detrimental implications for co-parenting, child outcomes, and overall family well-being (Clarke-Stewart et al., 2000). Primary caregivers are challenged to maintain effective lines of communication as joint decisions may need to be made about the child’s health care. The caregiver able to stay in the hospital with the child may experience fatigue, emotional burnout, and may be faced with having to make emergency healthcare decisions in isolation. Caregviers may also take turns staying in the hospital, resulting in regular transitions in their lives and contributing to burnout and fatigue. For the co-parent unable to stay in the hospital with the child, there may be challenges due to co-parent separation, accommodation costs, increased stress, and transportation access to get to the hospital.

During hospitalization, the communication interactions of the child with limited functional speech may look vastly different from those at home in the family system with most interactions led by hospital staff and reduced interaction with peers and broader family members. For example, Damario, is a 12-year-old boy with muscular dystrophy who uses an eye gaze device to communicate in his classrooms with teachers and peers and after school activities with peers and with his younger siblings and his grandmother. He is highly susceptible to upper respiratory infections requiring frequent and extended hospitalizations in the ICU. The hospital is a 1.5 -hour drive from his house and his grandmother and siblings need to stay at home due to job and school responsibilities. Instead of interacting with his peers, siblings, and grandmother, Damario must interact with hospital staff rotating into his room on 12-hour shifts, is not able to interact with other peers due to infection control protocols, and the staff does not reliably know how to setup his equipment leaving most interactions constrained to yes-no questions.

Children, like Damario, may experience substantial parts of their day interacting with a range of professionals including SLPs, occupational therapists, and nurses (Gormley & Light, 2021, Gormley et al., 2024) or they may spend substantial time in isolation with limited adult interactions due to adherence to infection control precautions or providers completing care activities elsewhere (Gormley et al., 2018). Limited quantitative data exists to describe the communicative interactions between a child and their health care providers during a hospital stay. Prior observational research has shown that a child with limited functional speech may interact with over twenty-five unique health care professionals during the dayshift in less than two weeks and that these healthcare professionals tend to dominate communicative interactions with the child and family (Gormley & Light, 2021). Health care providers such as nursing staff have also been found to dominate interactions with young adults who use AAC (Gormley et al., 2024) and children without communication disabilities (Shin & White-Traut, 2004). Recurring or extended hospital stays may result in health care professionals entering the extended family subsystem, especially as professionals gain familiarity with the child over time. Hence, SLPs may enter the extended family subsystem of the child who uses AAC, which emphasizes the importance of adequate training in family-centered AAC service-delivery.

Implications for Service Delivery: Identify Subsystems

In alignment with family systems theory, it is recommended that SLPs engage in discussions with family members and the child who uses AAC to understand the family system and subsystems to collaboratively determine priorities for intervention. Specifically, SLPs should identify (1) the primary caregiving adults in the child’s life, and (2) the family members who live in the home (permanently or temporarily) as families may not follow the conventional family structure and members other than parents or primary caregivers may play important roles in caregiving (e.g., grandparent).

The Social Networks Inventory (Blackstone & Hunt-Berg, 2012) is a structured assessment tool designed to identify and analyze the communication partners, methods, and environments of people who use AAC to support personalized AAC intervention planning. This can be completed collaboratively by an SLPs, people who use AAC, and their care partners to map family members and their respective responsibilities, roles, and perceived needs (Mandak et al., 2017). Working in collaboration with family members to identify the family unit naturally lends itself to family-centered service-delivery in the healthcare setting and inclusion of key communication partners in AAC support. Furthermore, the child’s family members and friends (i.e., social network), can be a source of strength, support, and resilience during stressful events, such as illness and hospitalization (Unger & Powell, 1980; Ell, 1996). If family members are unavailable when SLPs are completing initial assessments or treatment sessions, they could consult the electronic health record (EHR) to identify key family members and connect with families either by phone or electronically (e.g., email, patient portals) to intentionally gather this valuable information. This is a necessary first step towards delivering family-centered services as this helps providers to map the family subsystems, identify primary caregivers as points of contact, and begin collaboration with family members.

Interdependence of Family Subsystems: Wholism

Per family systems theory, one cannot understand an individual family member in isolation without consideration of the “whole;” hence the family should be conceptualized as a whole during each inpatient stay, and SLPs should strive to understand all the dynamic relationships between family members. Family subsystems are interdependent whereby any change for the child will impact the whole family unit (i.e., wholism). Consideration of the family unit may support increased quality of care by ensuring that health care services are culturally appropriate, align with family values, and designed to effectively promote change. Ignoring the impact of a child’s hospitalization on family members may lead to misunderstandings regarding why a family might end treatment early, fail to follow through, or be resistant to interventions. The family unit is an invaluable therapeutic resource for SLPs to ensure continuation of care beyond sessions.

Hospital stays can be a traumatic, emotional, and frightening experience for the child and family incurring an incredible amount of stress for the child patient and their family system (Boyd & Hunsberger, 1998; Phua et al., 2005). A child’s health needs can cause perceived changes to the family’s co-parenting subsystem as caregivers navigate the authority and decision-making structure of health care systems. Strategies should be developed by SLPs to include and support the family unit (i.e., primary caregivers and child) during prolonged hospitalization. SLPs should consider family wellbeing to effectively set healthcare priorities and effect change through intervention with all family members. It is essential that all interventions for the child are family-centered and inclusive of all subsystems (Mandak et al., 2017). Intervention for the child with limited functional speech should not be provided in a silo because any change for the child will alter the whole family unit.

Implications for Service Delivery: Educate and Empower Families

Caregivers spend more time with their child than SLPs and other professionals and it is important that they are equipped with the tools necessary to best support their child’s communication and health. As such, it is recommended that SLPs identify common goals, determine simple and achievable roles for caregivers, educate caregivers, and provide training (King et al., 2017). Inclusion of primary caregivers in service-delivery has the benefit of reduced parental stress (Thullen & Bonsall, 2017) and, due to the interdependent nature of the family, this parental stress reduction may also lessen child stress. In acknowledgement of the ripple effect to other subsystems resulting from the hospitalization of a child, it is recommended that service-delivery target holistic family system interventions and be targeted both to the caregivers and the child with limited speech and complex health care needs.

SLPs should consider working closely with families to identify meaningful goals and achievable activities for caregivers. Evidence indicates that caregivers express increased satisfaction with service-delivery when they are involved in identification of goals for the child (Lammi & Law, 2003). High levels of caregiver participation and knowledge have also been shown to be associated with increased satisfaction with service-delivery (Shao et al., 2021). SLPs can achieve this participation by collaboratively identifying roles for caregivers in service delivery, meaningful goals and achievable activities for the child and caregivers, and preferred content and foci of the caregiver trainings provided. Furthermore, it is suggested that SLPs work together with families to identify feasible activities for caregivers to complete successfully. In the case of a young child learning to use an AAC system in the hospital the caregiver could be taught one or more evidence-based intervention strategies, including: (a) model AAC; (b) pause and provide an expectant delay for at least five seconds and (c) respond all communication attempts by the child. These are evidence-based steps that have successfully been implemented in prior communication partner training research with both caregivers and professionals (e.g., Douglas et al., 2022). It may be necessary to collaborate with the caregiver to determine how many strategies they feel comfortable learning and implementing each session. SLPs may also need to identify which caregivers perform what roles in the family to determine who to include in activities and training.

Part of the role of the SLP is to provide family education as part of service-delivery to ensure caregivers are knowledgeable about their child’s healthcare and communication needs. One way to do this is to explain the rationale behind intervention decisions and create opportunities for caregivers to ask questions (e.g., pause and ask “what questions do you have so far?”). Research suggests that patients and families prefer the use of videos, plain simple language and avoid jargon, and educational online resources when receiving information in the medical context (Pal et al., 2024). SLPs could do this by providing caregivers with information sheets (e.g., AAC information sheets from online sources), video recordings from sessions, and online resources tailored for families or the general public. For an example of open-access materials relevant to AAC in the hospital context see www.patientprovidercommunication.org. See Table 2 for additional resources. This may be particularly helpful when a caregiver is unable to be present during intervention sessions as it helps to keep all family members informed. Training communication partners of AAC users is a highly effective evidence-based practice to support family members and now can be effectively offered in multiple formats (e.g., tele-health, face-to-face; Hao et al., 2021; Kent-Walsh et al., 2015). It is essential that SLPs tailor the topics and format of the training to meet the child and family system’s unique needs. For example, caregivers may need training on the operation of their child’s high-tech speech output AAC system if this is novel and introduced in the hospital setting. Additionally, caregivers may benefit from trainings on ways to offer choices to children with limited speech. SLPs may consider approaching caregivers as adult learners, considering their prior knowledge, life experiences, values, and beliefs when mediating interventions (Hurtubise & Carpenter, 2017).

Homeostasis and Adaptation

Two key concepts of family systems theory are (1) homeostasis and (2) adaptation. Homeostasis refers to the self-regulated, stable state of a family, maintained through routines and rules established by the family members. In families of children with disabilities and complex healthcare needs, this involves defining and adapting roles and routines to meet the child’s (and family’s) unique requirements. Family adaptation refers to the process of change in a family system that may come about due to circumstances that require a system to develop and maintain a new state of homeostasis or balance to meet the changing contextual demands (e.g., hospitalization of a member; Kim & Rose, 2014). When a young child is in and out of the hospital for much of their childhood, the family system and its subsystems are forced to accommodate and adapt to the hospital setting to maintain balance. Accommodation and adaptation of the family system when a child is hospitalized may be influenced by factors such as resources (e.g., financial, AAC system, environmental stimulation), work flexibility and schedule, childcare, time flexibility, integration of healthcare professionals, and health decision-making (Maul & Singer, 2009).

For example, when the child requires AAC resources to support communication there may be a burden on the caregiver to support the child’s navigation of the hospital setting and healthcare interactions (Phua et al., 2005) that is not present in the home setting. As a result, caregivers may sacrifice job demands in order to be by their child’s side, which necessitates adaptation in family routines and finances. The family system may need to re-organize and adapt to the change over time between the home environment, the hospital, and back to the home. The child subsystem may also need to adapt to the inpatient environment. The child may spend increased periods of time with healthcare providers who are not trained in AAC and may experience communication breakdowns which may increase fear and frustration. Consequently, the child may adapt their chosen communication modality and use challenging behaviors to express pain, fear, discomfort, or boredom when the AAC is not available, which may negatively impact provider-child interactions (Gormley & Light, 2021). Increased stress on the parent-child subsystem may reverberate into parent-child interactions. For example, for families with more than one caregiver, the absence of one caregiver may influence the relationships between the child and that caregiver as well as that with the other caregiver (if there is one). The co-parenting subsystem may also experience increased stress, worry, and financial concerns due to hospitalization of the child. Caregivers may need to shift roles and responsibilities to accommodate the absence of the caregiver spending their time at the child’s bedside. Therefore, it is hypothesized that these factors necessitate adaptation on the part of all subsystems to continue to support the family system in a healthy and positive manner during hospitalization.

Implications for Service Delivery: Support Family Adaptation

The family system in the inpatient setting is in the midst of adaptation. Family-centered service delivery should acknowledge and support this ongoing change. Importantly, SLPs can support the family during hospitalization by coordinating interdisciplinary care, monitoring family well-being, and taking steps to ease caregiver burdens such as planning steps to accommodate family adaptation as this may make for smoother transitions to the hospital.

Family adaptation to the hospital setting can be a challenging time as the family system attempts to reestablish equilibrium. SLPs may find it beneficial to proactively plan steps with caregivers to increase their successful adaptation. SLPs may want to talk with families to map out their goals for intervention during the hospitalization and, when there are siblings in the home, caregivers may be encouraged to reach out to extended family members to support them. Additionally, it may be beneficial for caregiver engagement in treatment if a communication plan is proactively determined to include a co-parent or other loved one in care and trainings. SLPs may also remind caregivers to take care of themselves and spend special time with siblings outside the hospital to support the family well-being and adaptation so that the family system is ready for treatment and learning during sessions.

Of note, the healthcare environment offers a ready context for interdisciplinary collaboration. In the inpatient setting, the child who may benefit from AAC and their family usually engage with many professionals during each hospital stay. SLPs can help to coordinate care across disciplines as much as possible to support the family system. For example, SLPs can educate nursing staff and physicians on strategies to support child communication using AAC. This may also ease caregiver burdens and stress and facilitate adaptation.

Another strategy that SLPs can use to support family adaptation is to complete well-being check-ins by asking questions of family members to determine their state of being (e.g., stressed, overwhelmed). Well-being check-ins may be helpful to complete in collaboration with a social worker. Additionally, the entire family unit may be experiencing turmoil during the hospitalization of a child and caregiver may be in shock if child hospitalization was unexpected. Alternatively, they may appear disengaged for a number of reasons. For example, if they are veterans of child hospitalization, have experienced a lack of family-centered care in the past, or are feeling overwhelmed. It is crucial that all professionals, including SLPs, are respectful and supportive of caregiver to enhance child health outcomes. SLPs can add check-in questions to interactions with caregiver to see how they are coping and if they have any questions. Active listening skills (e.g., Listen, Ask, Focus, and find a First step; see Mandak et al., 2020) can be helpful to structure the interaction. The LAFF strategy is an active listening strategy that was developed by Mandak and colleagues (2020) and has been successfully implemented with preservice SLPs as a technique to improve family-centered practice. A benefit is that this may provide insight into the well-being of the family system and realize areas of need. For example, a caregiver in the hospital may infrequently leave their child’s side and may be in need of a safe space to express their fatigue or take a few minutes to themselves. When possible, SLPs can give caregiver opportunities to take short breaks to refresh and be ready to learn.

Perspective-taking, a concept that comes from the family therapy literature, may be a helpful strategy to facilitate well-being check-ins and offer appropriate support to families. Perspective-taking is defined as the process of imagining an experience from another person’s viewpoint (Batson et al., 1997); this entails showing concern for the individual, educating oneself about the situations experienced by another, or sharing information about these experiences with others (e.g., educating other professionals; Calvard et al., 2023). Evidence has shown that perspective-taking by providers improves health care interactions (Calvard et al., 2023) and increases satisfaction in encounters (Blatt et al., 2010). SLPs should attempt to learn about what families are going through and offer compassion to better understand the experience of the family system. Compassion should be integral to service-delivery by health care providers (Perez-Bret et al., 2016). The use of perspective-taking and compassion may lead to the implementation of supportive family-centered care.

Families may experience further adaptation upon discharge from prolonged hospital stays. Research has found that caregivers continue to experience elevated stress levels post-hospitalization and report challenges with family functioning and adaptation several months later (Board & Ryan-Wenger, 2002). SLPs can support positive family adaptation upon discharge by facilitating family-centered team meetings to establish a plan for home transition of care. This is particularly important when it comes to ensuring that caregivers are comfortable utilizing and operating aided AAC to communicate effectively with their child. Hospital-based SLPs can also support this process by collaborating with case management to identify home-based, school-based, or outpatient SLPs to support the child and family upon discharge. Once providers are identified, hospital-based SLPs should provide recommendations and plans with the new therapists, if the family has given permission, to support the coordination of care, especially if the new provider does not have access to the patient’s EHR.

Co-parenting

Co-parenting refers to how parental figures relate to each other in joint childrearing (Feinberg, 2003). According to Feinberg (2003), this involves support (e.g., mutual respect and acknowledgment), division of labor, family management (e.g., resolution of conflict, family rules), and agreement on childrearing (e.g., safety, education, discipline). The co-parenting subsystem collaboratively guides and shapes the family unit and is integral to the child’s adjustment and development. Traditionally, co-parents are the child’s biological mother and father; however, co-parents may refer to any caregivers that work together in the service of childrearing (Feinberg, 2003). It is also important to acknowledge that, in the case of families with one parent or caregiver, co-parenting may not be applicable. Extended hospital stays may disrupt or separate the co-parenting team and consequently impact the rest of the subsystems in the family unit (Clarke-Stewart et al., 2000). For example, it is possible that only one parent is present during healthcare encounters in the hospital due to work schedules and hospital policy. As a result, that parent may end up responsible for day-to-day care decisions that may leave the other parent less aware of what is going on daily. Consequently, this may have repercussions on the co-parenting unit and may subsequently impact the family system.

Evidence has shown that in families with a child with a developmental disability more supportive co-parenting relationships were associated with lower stress levels (Thullen & Bonsall, 2017). Therefore, parents should be provided with support and intervention to establish supportive and positive co-parenting relationships. SLPs should understand the importance of addressing and including all co-parents in the child’s care to enhance child outcomes and reduce parental stress. Evidence indicates that stronger, more cohesive co-parenting relationships lead to better health outcomes for the child (Thullen & Bonsall, 2017).

Implications for Service Delivery: Facilitate Effective Co-parenting

Strong co-parenting is associated with supportive child-rearing in the family unit (Ippolito et al., 2010). In the inpatient hospital setting, this may be especially important for children with limited functional speech. SLPs should encourage caregivers and strive to work with the family to facilitate effective co-parenting during AAC implementation. Following identification of members of the parent-child subsystem, SLPs can problem-solve with caregivers to identify techniques that meet co-parenting needs.

One strategy that may be helpful for the inclusion of all co-parents is the utilization of videoconferencing technologies. Approximately 75% of hospitals in the United States can connect with patients via telemedicine (Hyder & Razzak, 2020). Due to the COVID-19 pandemic many SLPs are now experienced and familiar with telemedicine practices. In the event that only one parent in a co-parenting system can attend, it may be helpful to offer hybrid service-delivery so that the other co-parent may be able to videoconference into sessions and services and be included. Alternatively, another strategy is to include the co-parent in the session via speaker phone. The introduction of aided AAC may be particularly overwhelming for caregivers and video conferencing, or a phone call allows for both co-parents to become familiar with intervention services, ask questions, and offer support to their partner from a distance.

Another strategy that may help co-parenting is for the provider to share written recommendations and key points from the session with caregivers so that they can refer to notes rather than needing to remember everything that is discussed. Notes may help keep the absent co-parent involved and support home carryover practices. Additionally, family members present could voice record the interaction on a phone and play the recording for the co-parent. This ensures that nothing is missed in the notetaking and could make the absent person feel like they were in the room. Each family may benefit from different supports, and it is recommended that SLPs ask families what would best support them (e.g., handwritten notes, electronic notes, videos). In many cases, a shareable EHR with notes written in family-friendly language may be a sufficient supportive resource to share information with families consistently. However, not all families may understand how to access their patient portal in the EHR. SLPs can ask about the family’s familiarity with this process and, if the family has never accessed this tool, a referral to case management or social workers would be beneficial to assist the family in this process.

Application of Family-Centered Services to Two Case Examples

This section describes the application of family-centered services to two case studies of children with limited speech and complex healthcare needs in the hospital setting (i.e., Rose and Carlos). These case examples are used to illustrate family-centered care across different ages, diagnosis, and family system make-up. Note that these case examples are based on examples drawn from prior observational research by Gormley and colleagues (see Gormley et al., 2024 and Gormley & Light, 2021); however, several fictional additions were made to the cases to protect the privacy of these families and to better illustrate a family systems approach. As no human subjects were involved in this project the study was not subject to an institutional review board process.

Example 1: Rose

Rose (pseudonym) is a young 24-month-old Caucasian female with a primary diagnosis of failure to thrive and a history of prematurity. Her family spoke English in the home. She has spent much of her life in and out of the inpatient hospital setting due to her healthcare needs. Rose primarily communicates multimodally through unaided AAC including gestures, facial expressions, vocalizations, and sign approximations. When not in the hospital, she receives early intervention SLP services in the home and is beginning to learn to use graphic symbols on picture cards and a speech-generating app to make choices. She does not yet have a dedicated aided AAC system; however, her family would like to continue to explore options in the hospital. Her primary caregivers were her mother (Susan) and father (Brian) who were married and employed full-time. Due to Rose’s prolonged hospitalization Susan had taken extended leave from work to stay overnight with Rose in the hospital. Susan’s mother, Judith, assisted the family and switched with Susan to stay overnight as needed.

Identify Subsystems

The SLP working with Rose in the inpatient hospital setting conducted an informal interview with Susan during the first session to gain an understanding of Rose’s family system.

Educate and Empower Caregivers

At the start of Rose’s services, the SLP consulted with Susan and Brian to determine meaningful and family-centered goals for intervention. The SLP discovered that Susan and Brian were struggling to understand Rose’s communication. Additionally, they were concerned about her restrictive eating. These concerns were used by her SLP to design intervention goals. During service-delivery Susan was trained in the use of adaptive feeding utensils and given tips to support Rose’s engagement with and exploration of new foods in collaboration with the SLP and occupational therapy team. Aided AAC was introduced and training was provided to caregivers (e.g., turning device on/off, finding vocabulary, modeling). Specifically, Susan was taught to model communication for Rose using her aided AAC system and then always respond to any communicative acts (i.e., ‘model and respond’). To include Brian, Rose’s SLP shared brief session notes via the EHR system about feeding therapy and AAC intervention strategies used in sessions. Rose’s SLP was careful to write her session notes in family-friendly terms to support Brian’s comprehension of the notes. Additionally, the SLP recorded a short video clip of herself using ‘model and respond’ with Rose during a session as quick reference guide for both caregivers which was stored on Rose’s iPad.

Support Family Adaptation to the Hospital

Susan was overwhelmed, stressed, and fatigued during Rose’s hospitalization. She infrequently left Rose’s side even to meet her basic needs such as going to the bathroom or purchasing food. Rose’s SLP used perspective-taking to understand Susan’s experience and concluded that Susan was likely under a lot of strain. Consequently, Rose’s SLP used active listening and structured questioning to ask Susan “what would support you right now?” She learned that Susan wanted a five-minute break to purchase a coffee from the cafeteria. The SLP was then able to provide support to the family by enabling Susan to take a short break and be in a better state for learning upon her return to the session. The SLP then shared this information with nursing staff who were then able to provide Susan with opportunities for self-care. This reduced Susan’s reported stress and improved her reported satisfaction and observed participation, thus enabling her to engage in higher quality interactions with her daughter to support her recovery and communication.

Facilitate Effective Co-parenting

Brian had used up all of his leave from work and was unable to attend Rose’s intervention sessions in person during her hospitalization. He was concerned about missing out on important information and shared this with Susan. At the next session when Rose’s SLP checked in with Susan about her well-being she shared Brian’s dilemma. The SLP then collaborated with case management to locate a used tablet to videoconference Brian into sessions dependent upon his availability. This supported co-parenting and Susan reported increased feelings of support during sessions.

Example 2: Carlos

Carlos (pseudonym) is a 20-year-old Latino male with diagnoses of autism spectrum disorder, seizure disorder, aspiration pneumonia, and tracheostomy with a ventilator. His family spoke both Spanish and English at home. He primarily communicated using a high-tech AAC speech-generating device, gestures, and vocalizations to communicate. His father, Sergio, took time off work to stay with him during his hospitalization. Carlos’s mother passed away when he was 11 years old. His grandmother (Patricia) and aunt (Cindy) joined him in co-parenting supporting his father with parenting tasks and often took Carlos to appointments.

Identify Subsystems

Carlos’s SLP used the Social Networks Inventory (Blackstone & Hurt-Berg, 2012) to determine Carlos’s social circles and family subsystems. The results of the inventory highlighted the important relationships of Carlos’ father, grandmother, and aunt in the co-parenting system and also identified additional communication partners that would need to be supported in the hospital and outside of the hospital prior to his discharge.

Educate and Empower Caregivers

Carlos’s father Sergio took time off from his full-time job to stay in the hospital with Carlos and as such he was present in most sessions and encounters. Patricia and Cindy took Sergio’s place as needed to support his work schedule. At the start of services, Carlos, Sergio, Patricia, and Cindy were consulted by the SLP to determine meaningful and family-centered goals for intervention. His SLP learned that Carlos wanted to be able to better communicate with his family members using his AAC system in the hospital, as well as to be able to share his preferences with health care providers (e.g., express when he wanted the TV turned on and which channel). Sergio, Patricia, and Cindy agreed with these goals and worked with the SLP, and collaborators from respiratory therapy, nursing staff, occupational therapy, physical therapy, and child life specialists to set achievable activities for the family unit. All members of the team were able to contribute to routines to embed consistent communication opportunities and hospital-related vocabulary onto his device. The SLP also taught Carlos how to navigate between page sets on his high-tech AAC system, programming novel messages (e.g., I would like to rest), and express social messages with family members (e.g., I love you) during sessions.

In sessions, the SLP worked with Carlos and Sergio to program personal communication messages into his AAC system in both English and Spanish. During these sessions, the SLP trained Sergio on the programming steps required for Carlos’s AAC system. A short informational video recording was made during sessions to share with family members via the EHR patient portal application.

Support Family Adaptation to the Hospital

Sergio felt guilty and stressed about leaving Carlos’s side for work. Patricia and Cindy felt worried about Carlos’s health and were anxious about transportation and accommodation costs. The SLP noticed that Carlos’s family members were often quiet in sessions and used perspective-taking to imagine the family’s point of view and concluded that the silence may be due to a cultural influence or they may feel stressed or overburdened. Following this, Carlos’s SLP used structured questioning to ask caregivers “how are you coping right now?” and learned that that they were overwhelmed. The SLP felt compassion and collaborated with social work and family counseling services to support Carlos’s caregivers. Furthermore, the SLP recommended that caregivers take short breaks as needed and collaborated with child life specialists to coordinate scheduled opportunities for these breaks to occur while child life specialists remained at bedside.

Facilitate Effective Co-parenting

All members of Carlos’ co-parenting system were worried about missing information and recommendations during intervention sessions. Cindy also had many questions for the SLP about Carlos’s transition to the home upon discharge. Carlos’s SLP used telemedicine to organize an interdisciplinary team conference for Carlos’s caregivers to work together to plan his discharge transition. In addition, the SLP created a detailed summary checklist of strategies for use by Carlos and his family system following discharge. Furthermore, the SLP referred Carlos to continue outpatient SLP services focused on AAC upon discharge and, after obtaining Sergio’s written permission, scheduled a phone conversation with the new outpatient SLP to share updates, progress, his current plan of care, and cloud-based copy of Carlos’s AAC user. With the written checklist, videos, and care coordination meeting in place, all co-parents felt more comfortable and confident using the AAC system at home and collaborating with the new outpatient SLP.

Discussion

Although family-centered care is critical to best practice (Kuo et al., 2012), it has been lacking in AAC service-delivery in the medical setting. Therefore, there is a need for recommendations to support SLPs with this implementation. To address this, the current paper drew from family therapy literature to inform how SLPs might apply family-centered care in the hospital setting with children who use AAC and their families. Family systems concepts were used to describe key recommendations for practice by SLPs working with family members in the healthcare environment (see Table 2). Family-centered care has been noted as an essential component of best practice in pediatric health care in the hospital (Kuo et al., 2012) and is especially important when it comes to AAC (Mandak et al., 2017). Effective family-centered care is paramount to patient health outcomes and has been associated with decreased stress, increased patient satisfaction, and overall improvements in health and well-being (Dunst & Espe-Sherwindt, 2016). The family unit in equilibrium is a ready source of support, protection, and nurture across the lifetime that has the potential to substantially improve health outcomes (Barnes et al., 2020; Berger & Font, 2015). With pediatric hospitalization on the rise in the United States there is an increased likelihood that SLPs in the healthcare setting will serve young children with limited speech who may benefit from AAC. Therefore, it is imperative that SLPs are equipped with the necessary tools to provide the highest quality of family-centered care (e.g., key interview questions, techniques to map family systems).

To provide the highest standard of care, SLPs should identify the child’s primary caregivers, learn about family goals, and provide the family system with tailored information and training to best support child outcomes. SLPs can also support the well-being of the family system by attempting to understand the family’s experience of hospitalization, offer individualized supports as needed, and connect family members to other sources of support available in the hospital (e.g., counselors, case management, social work, child life specialists) and beyond (e.g., outpatient or school AAC providers). Family support will vary for each family and may range from offering caregivers a short break to incorporating telemedicine into sessions to include co-parents who may not be able to be present. Primary caregivers are an asset to service-delivery because they are experts in their child’s needs and communication modalities (Marshall & Goldbart, 2008) and are excellent resources for continued care upon discharge. By including and supporting the family system, SLPs can also build rapport with caregivers that may improve intervention to make sure priorities and recommendations align with family priorities and values. Increases in the family’s intervention acceptance and uptake upon discharge may also be observed as a result

Failure to provide effective family-centered services could have consequences for both the child who may benefit from AAC as well as the family system. This is of particular concern for children who rely on AAC to be understood. Primary caregivers have reported negative emotions and frustration when they were not included in AAC service delivery and when communication from professionals is poor (Moorcraft et al., 2019). Furthermore, caregivers have reportedly struggled to effectively use their child’s AAC system to support communication when they have lacked support and training (Moorcraft et al., 2019). For the provision of AAC services it is particularly important that SLPs provide effective family-centered care as this may minimize the risk of AAC abandonment over time.

Although this paper has focused on the role of the SLP it is important to note that SLPs in the hospital setting often work within an interdisciplinary team themselves and are not the only providers interacting with the family. There are many burdens on families in the inpatient setting and for some families it essential that the SLP refer families to appropriate social supports (e.g., psychology, social worker) as needed. Furthermore, while this paper proposes some recommendations for family-centered care in the inpatient setting, there is still much work to be done to move the field forward and develop evidence-based practices to support effective family-centered inpatient AAC services.

Future Directions

Limited guidance exists to guide SLPs in AAC service delivery for children with significant healthcare needs during prolonged hospitalizations. Prior evidence indicates that the experiences of family-centered care are often dissimilar for families and SLPs. Mandak and Light (2018) discovered that families reported lower frequencies of family-centered care occurrences than was reported by SLPs. This discrepancy is concerning as it implies that there is a disconnect between the experiences of families and the perceptions of service-delivery by SLPs. Future research is needed to better understand the family experience in the hospital context, and to design and implement family-centered interventions in the hospital setting to improve outcomes. To address this, several approaches are needed. First, research is needed to better understand the needs and preferences of families of children who use AAC in the hospital to bridge this gap. Specifically, qualitative research is needed in the pediatric inpatient setting to capture the perceptions and experiences of both families and SLPs more comprehensively to determine priorities for service-delivery interventions. It is essential that the voices of those directly involved are heard to develop appropriate interventions and services. As much as possible, the voices of children, adolescents, and young adults who benefit from AAC should also be heard and included in considerations for service-delivery in the hospital setting.

Second, research is needed to determine methods of family-centered service-delivery currently used by SLPs in hospitals and to determine the effectiveness of these services by SLPs to evaluate best-practices for implementation. For example, a focus group approach that includes SLPs and caregivers and aims to co-design resources and approaches to support the implementation of effective family-centered care may be a beneficial first step towards improved service-delivery in the healthcare setting. The recommendations provided in this paper may lay the groundwork for this next step. Furthermore, it is recommended that the implementation of these co-designed resources is explored to determine effectiveness and make changes as needed so that resources and approaches are best suited to the environment and family systems.

Third, research that implements and evaluates communication partner trainings is recommended to support both health care professionals and SLPs use of family-centered techniques during service-delivery. Communication partner training has been shown to be highly effective across a range of settings and partners, including caregivers and healthcare providers (e.g., Douglas et al., 2022; Kent-Walsh et al., 2010; Gormley et al., 2023). Partner training research has successfully been implemented in-person, online, and via a mobile app with positive outcomes seen for both partners and people who use AAC. Hence, partner training may be an efficient tool to train SLPss in the implementation of strategies, such as teaching caregivers to model AAC, or steps to determine members of a family system. Furthermore, SLPs could design short mobile partner trainings to share with caregivers to support carryover of techniques outside of sessions. The implementation of short mobile partner trainings may be a particularly promising approach for the busy and stressful healthcare setting and warrants future research (Gormley et al., 2023).

Conclusion

The hospitalization of a family member is highly stressful for the entire family system, particularly when it entails the hospitalization of children who use aided and unaided AAC. Family-centered care has the potential to ease the burden on families and increase family well-being and satisfaction with healthcare care. PSLPs should strive to include family members in service-delivery where possible, seek to understand caregiver burdens, and offer supports to ease caregiver strain during the hospitalization of a child with limited functional speech. There is a need for future research to determine effective evidence-based strategies for family-centered care of AAC users during extended hospitalization.

Learning Outcomes.

1. Describe the key principles of a family systems model in the hospital setting

2. List at least three ways that SLPs working in hospital settings can implement family-centered practice when working with individuals who require AAC

3. Explain the benefits of using a family systems approach to service-delivery when working with pediatric patients who benefit from AAC

Data availability statement:

There is no dataset to accompany this manuscript.