Supporting the Circle Apraxia Kids Webinar May 2018 FINAL ... · “Supporting the Circle: Families, Friends, and Functional Outcomes,” Presented by Heather Rusiewicz, PhD, CCC‐SLP,

“Supporting the Circle: Families, Friends, and Functional Outcomes,” Presented by Heather Rusiewicz, PhD, CCC‐SLP, Sponsored by: Apraxia Kids

Supporting the Circle: Families, Friends,

Functional Outcomes

Heather Leavy Rusiewicz, Ph.D., CCC-SLP

Associate Professor and Program Director of Speech Production Clinic

Department of Speech-Language PathologyDuquesne University

Pittsburgh PA

https://www.iconspng.com/image/97180/happy-family-circle-small-prismatic

Disclosures

Financial Disclosure: Dr. Rusiewicz is an Instructor for the 2018 Apraxia Kids Intensive Training Institute and a past recipient of a Childhood Apraxia of Speech Association of North America (CASANA) Research Grant. Dr. Rusieiwcz also completed a webinar for CASANA, “Manual Mimicry: Using Gestures to Cue Speech Targets” in 2016.

Non-Financial Disclosure: Dr. Rusiewicz conducted the “iPads for Kids with Apraxia Pilot Program” study initiated by the CASANA”. She was an invited speaker for the 2015 Childhood Apraxia of Speech.

Dr. Rusiewicz also co-conducted a study of the impact of CASANA’s Intensive Training Institute in 2014, “Impact and Perceived Benefits of a Problem-Based Learning Workshop for Continuing Education in Speech-Language Pathology: A Pilot Study” .

Learning outcomes

As a result of this webinar, participants will be able to:

Describe the four pillars of person/family-centered care.

Identify ways to assess and target functional outcomes for individuals with childhood apraxia of speech (CAS).

Develop at least three strategies to incorporate and/or advocate for person/family-centered care into the clinical management of CAS.


Agenda

1. Understanding person/family-centered care (will refer to as FCC throughout), the differences, the strengths, the challenges, the details

2. Exploring experiences and functional outcomes related to childhood apraxia of speech

3. Applying person/family-centered care into practice

4. Measuring and targeting functional outcomes

5. Q & A

1. Understanding person/family-centered care: The differences, the

strengths, the challenges, the details

Don’t we all care about our patients and their

families?Of course…….

https://i2.wp.com/adventuresofalabornurse.com/wp-content/uploads/2014/05/picture2.jpg?w=428


….yet, the systematic construction and adherence to family centered care practices is in its infancy in SLP.

• Transitioning from “parent involvement” to “family centered” (Crais, 1991)

• “Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice.” (Kuo, Houtrow, Arango, Kuhlthau, Simmons, & Neff, 2012, p. 297).

“Family-centered care is a way of caring for children and their families within health services which ensures

that care is planned around the whole family, not just the individual child/person, and in which all the family members are recognized as

care recipients” (Shields, Pratt, & Hunter, 2006, p. 1318)

www.vision.org/visionmedia/ethics-and-morality/ethics-family-centered-home/3520.aspx

The family acts as the “main educator, supporter, and shaper of each person”

(Bamm & Rosnenbaum, 2008, p. 1618).


We all have a lot to learn.Unifying the needs, cultural considerations, feedback, concerns, expectations, and experiences of the patient and their families combined with the expertise, experiences, and empathy of the

clinician can lead to optimal outcomes.

Family centered care and functional outcomes propelled by Apraxia Kids from its conception. Truly a model for other practice areas, though demonstrates the exacerbated call for family centered practice for individuals with CAS.

40+ year history of Family-Centered Care

• Post WWII until second half of 20th century, gradual shift to welcome families in the hospital setting, especially for children

• 1987: Surgeon General, Dr. Everett Koop, advocated for “family-centered, community-based, coordinated care for children with special health care needs and their families”

• 2006: Institute for Family-Centered Care and Institute for Healthcare Improvement worked together to create initiatives to promote patient-/family-centered care

• Past 10+ years: integration to research, practice, higher education, and now emerging in the treatment of CAS and other speech sound disorders (SSDs)


Transitioning to a Family Centered Care Paradigm

(Beatson, 2006)

Medical

Child-Focused

Family-Focused

Family-Centered

Family Centered Care rooted in these core beliefs

1. Families are considered experts in what helps and hurts them.

2. Families are indispensable, invaluable partners for policy makers, helping professionals, and advocates.

3. Families are not called, or treated as, dependent clients. Helping professionals and policy makers view families as equals, as citizens, with whom they collaborate, and whom they empower.

4. Family-centered policies and practices... promote family-to-family and community-based systems of care and mutual support.

(Briar-Lawson, Lawson, Hennon, Jones, 2001, pp. 185-186) https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcQy73kQbXkSpKztw4FneqjH8ZjwV4dyegGETX_vSc_wZxjwbVzz6A

Benefits of Family-Centered Care

• Improved health and well being

• Increased satisfaction with care

• Facilitate generalization outside of the therapy room

• Promote functional intervention goals

• Stronger alliance with caregivers and family

• Increased consistency of implemented strategies in and out of therapy setting

(American Academy of Pediatrics, 2012; Crais, 1991; Kuhlthau et al., 2011)


Challenges of Implementing FCC

• Political factors at a macro level

• Conceptual factors-comfort of the professionals

• Financial factors

• Attitudinal factors-individual and cultural differences in level of acceptance of FCC model

Benefits of FCC in SLP

Washington and colleagues (2012) determined that perceptions of positive outcomes and experiences related to intervention for speech and language goals were linked to not only the clinician’s competence, but also their relationship and rapport with the child and the family (p. 230), based on a cohort of 67 preschool aged Canadian children.

https://i0.wp.com/www.thrifturban.org.uk/wp-content/uploads/2014/09/tick.jpg

Not so fast…also see….

• Pappas, N. W., McAllister, L., & McLeod, S. (2015). Parental beliefs and experiences regarding involvement in intervention for their child with speech sound disorder. Child Language Teaching and Therapy.


“Whilst they appreciated being asked for their opinion regarding intervention goals

and activities, the parents had a preference for the therapist to take the

lead” (Pappas et al., 2016, p. 223).Seven parents of six preschool-aged children with mild-moderate

SSDs were interviewed at three time points during 4-6 weeks intervention in Queensland, Australia.

--------------Interviewer: “Would you like it to be a partnership?”

Respondent: “ Well, I don’t see how it can be a partnership when you’re dealing with professional people. It’s their job, you can’t tell them what to do. You can’t take your car to the

mechanic and be a partner with the mechanic, can you?”

“Parents have firm conceptions of their roles as advocates for their children but

are less certain about adopting an intervener role when their child shows

difficulties developing speech and language…evidence…indicates that some

parents’ conception of role changes as they work alongside the SLT.”

(Davies, Marshall, Brown, & Goldbart, 2017, p.183)

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Institute for Patient and Family Centered Care

http://www.ipfcc.org/index.html


2. Exploring experiences and functional outcomes related to childhood apraxia of speech

http://journeyofhealth.org/

Functional outcomes and experiences of individuals with CAS and their families:

My eye opening exchange

Personal experience paving my professional path

https://herbaldispatch.com/wp-content/uploads/2016/04/mota-lollipops-3.jpg

Experiences of individuals with CAS and their families: Personal reports

• Audio Clip #1


Experiences of individuals with CAS and their families: Empirical Findings

• Miron (2012) interviewed eleven parents regarding their adaptation to their children’s diagnosis of CAS and examined the parent’s decision-making process for seeking therapy services and their subsequent interactions with speech-language pathologists in a sample of eight children.

• Parents reported that open communication between SLPs and families was key for a positive therapy experience and that misinformation, misdiagnosis, and “inadequate therapy services” (pp. 105-106) led to negative experiences

Experiences of adults with CAS and their families: Empirical Findings

• McCormack et al. (2012) interviewed two young men with a history of CAS, ages 17 and 23 years, and their mothers (McCormack, et al., 2012) about their experiences as related to CAS.

• Three themes (i.e., knowing that a speech disorder was present, acknowledgment of the challenges that were associated with their SSD, and acting to address the challenges of associated with their SSD) emerged for both the individuals with a history of CAS and their mothers.

• These authors suggested “a need to support families as well as individuals in SLT intervention” and to recognize caregivers’ “feelings of guilt, isolation, and fatigue”

Experiences of children with SSDs and their families: Empirical Findings

• McCormack, McLeod, McAllister, and Harrison (2010) analyzed interview transcripts from caregivers as well as interviews and drawings from four to five year olds regarding their “experience with living with childhood speech impairment” (p. 379).

• Emergent themes:• Speaking

• Listening

• Being frustrated


Rusiewicz, Maize, & Ptakowski(2017)

“Parental experiences and perceptions related to childhood apraxia of speech:

Focus on functional implications”

A mixed qualitative/quantitative design was used to study the responses of 40 parents.

The participants completed two Likert-scale questionnaires and responded to four phenomenological questions about their own experiences and perceptions of their children’s (ages 3-16 years) experiences regarding living with CAS

Quantitative Results

Questionnaire data indicated that in addition to parents reporting concern about their children’s speech production, they also consistently expressed that CAS affected their children’s every day activities and social interactions.


Rusiewicz et al. Recent Research

Qualitative Results

Four key themes emerged from the parents’ qualitative responses:

(1) concerns about their children’s intelligibility

(2) challenges with peer relationships

(3) reliance on parent to be the child’s “voice”

(4) emotional responses such as frustration.


Friendships and New Social Situations

• Parents commonly reflected on the impact of CAS on their child’s social interactions, especially with peers and novel communication contexts.

• Parents reported more concerns about peers understanding their children relative to adults.

• Next steps, incorporating these and other experiences within a Family Centered Care paradigm.

• Within your personal context, how might you incorporate peers and social situations into intervention and functional goals/objectives for children with CAS?


Functional Focus: Friends and Social Circle

• Small groups

• Support and intervention outside of traditional therapy setting

• Novel conversational partners

• Role play activities

• Social language in core vocabulary

• Peer/Sibling-mediated therapy

Stay, Play, Talk: Peer Mediated Intervention (PMI)

• English, Shafer, Goldstein, & Kaczmerek (1997) – originated for preschoolers with an autism spectrum disorder.

• Stay (i.e., cues for the peer to remain with your assigned “buddy” with a communication challenges)

• Play (i.e., interact and play with your “buddy”)

• Talk (i.e., talk to you buddy about what you are doing together) may result in increased comfort and enjoyment for children with CAS in peer-based social situations.

One may also anticipate gains in other speech and language objectives related to social skills (e.g., initiations, length of spontaneous utterances, self-monitoring of speech production, etc.).

3. Applying person/family-centered care into practice

https://sensecorp.com/blog/transformation/improving-customer-experience-starts-with-mapping-the-customer-journey


Remember that SLPs are Communication

Specialists……certainly for clients, but also for their

families, and others in their circle.

The expertise SLPs have to support and facilitate communication can and should be

applied to interactions with patients and others in their circle to strengthen

relationships and lead to optimized care. https://thedadnetwork.co.uk/wp-content/uploads/2016/11/group-of-kids-talking-clipart-clipart-panda-free-clipart-images-ahmXvQ-clipart.jpeg

Listen, listen, listen…Be present.Be open.

Be positive and patient.

https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcQe9CI8uzpwKIIeclGRZGxniHIVrc7TV2V3Vy4l8QSDbPwvNs7O

Stephen Covey, Author of Seven Habits of Highly Effective People

Optimal Outcomes

Family Centered Care

Competent, Effective, Evidence-

Based Care


Institute for Patient and Family Centered Care

http://www.ipfcc.org/index.html

Principle 1: Respect and Dignity

“Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.”

Parent reflections regarding Respect and Dignity

• Audio Clip #2


Respect and Dignity in Action

• Scheduled time to communicate and LISTEN to families, initial evaluation and during intervention.

• Create interview questions focused on patient and family experiences and expectations, in addition to traditional case history forms (e.g., Tell me about an experience when your child was able to communicate something new to another family member; Are there interactions/situations that are particularly important for your child to be confident and communicative in?)

• Modifying goals, changing treatment intensity, discharge plans, etc.

• Mutual respect comes with relationships.

• How might you do a better and more systematic job with listening to and honoring “patient and family perspectives and choices”?

Principle 2: Information Sharing

“Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete and accurate information in order to effectively participate in care and decision-making.”

Parent reflections on Information Sharing

• Audio Clip #3

• Audio Clip #4


Information Sharing in Action

• We often share information in written form with some verbal exchange (perhaps), FCC highlights the need to increased education of families with dedicated time.

• The information we share is likely unbiased, accurate, and useful--- but is it also affirming?• To affirm- “to offer (someone) emotional support or

encouragement.”• It is especially important to affirm our clients with CAS and

their families…..

• How might you do a better and more systematic job with sharing information that is useful and affirming?

Principle 3: Participation

“Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.”

Parent Reflections on Participation

• Audio Clip #5


Participation in Action

• As SLPs: Do not just expect participation, encourage it and scaffold it.

• Parents of children with CAS, frequently reported they are the “interpreters” for their children, they infrequently reported that they provided their children with strategies to support their communication and even more infrequently reported educating others about the nature of CAS (Rusiewicz et al., 2017).

Participation in Action

• Empower parents, siblings, and families by actively educating and involving during intervention (certainly in early intervention, but also beyond) and assure their understanding.

• When possible, consider integrating parents as interventionists, go beyond the “take-home tasks”.

• How might you do a better and more systematic job with encouraging and scaffolding family involvement?

In preparation (Rusiewicz):

• Modification a family-focused framework, like that employed by Yaruss, Coleman, and Hammer (2006) with young children who stutter and their families for children with CAS.• First two to four sessions of intervention centered on parent

counseling and education, followed by three sessions of parent-implemented strategies.

• Strategies are to be provided with a variety of clinician supports, including feedback via a wireless ear bud/microphone system.

• The objective of the next one to two sessions is to review the strategies with the parents and any other family members that may be implementing the strategies outside of the treatment environment.


Principle 4: Collaboration

“Patients, families, health care practitioners, and health care leaders collaborate in policy and program development, implementation and evaluation; in research; in facility design; and in professional education, as well as in the delivery of care.”

Collaboration in Action

• Again, this is an area that Apraxia Kids has embraced and supported from day one.

• Tenets of family centered care goes beyond the isolated family

• Families and professionals work together to promote and work toward changes at a macro-level, institutional, government, etc.

Beyond the Child: Caregiver

Considerations

https://kinges.pwcs.edu/departments/esol_team_k-5/e_s_o_l_resources_for_parents


Caregiver Wellbeing and CAS

• Caregiver stress is studied in other areas of health care, including communication disorders.

• Caregiver wellbeing is less often studied for parents of children with SSDs.

• Giving parents and other caregivers a voice about their own experience allows for increased educational opportunities, alignment of expectations with reasonable and feasible therapeutic goals, parent involvement in and out of the therapy room, and the possibility to identify when parental stressors interfere with their own well-being and the progress of their child.

• Valuing and understanding the experiences of parents raising children with SSDs is an important next step in fully implementing Family Centered Care in SLP.

Parent reflection on caregiver wellbeing

• Audio Clip #6

Parent support in action

• Empathize with parents’ stressors and apprehension related to caregiving and their child’s diagnosis of CAS and communication concerns and provide recommendations/resources for professional support, if possible.

• Create digital and/or face-to-face support networks for family members (Apraxia Kids does this so well!!)

• Focusing on the circle, not just the client will encourage parent support too


4. Measuring and targeting functional outcomes for individuals

with CAS

https://www.pickthebrain.com/blog/how-to-focus-when-you-work-from-home/

Outcome Measurement

• Essential for evidence-based practice

• “The ultimate goal of therapy is to improve an individual's functional outcomes” https://www.asha.org/policy/SP2016-00343/

• International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY) provides a useful and universal framework for focusing on objectives and outcomes that “go beyond the phoneme”Activities and Participation

Functional outcomes


“The lack of participation level measures is surprising, since after the late 1990s (1996–1997) at least three outcome measures were developed that focus on measuring change from a broader social

perspective and could be used with preschool children with speech and language disorders. These measures are American-Speech-Language- Hearing

Association National Outcome Measure System (Pre-K NOMS), Therapy Outcome Measures

(TOMs) and FOCUS” (Kearney et al., 2015, p. 257)

Functional outcomes are described by Campbell (1997), p. 387) as “those communication behaviors acquired

during the treatment process that increase a child’s level of independence in real-life

communicative situations” (p. 387).

Parent Perceptions about Functional Outcomes

• Audio Clip #7


Assessment Tools

Socialization Scale- Vineland Adaptive Behaviour Scales–Second Edition

• Socialization Portion of Instrument Assesses• Interpersonal Relationships

• Play and Leisure Time

• Coping Skills

• Dale and Hayden (2013) used this tool to assess change in functional outcomes for four preschool aged children with CAS who received PROMPT therapy


SPeech Impact Now/Later (SPIN/SPIL; Rusiewicz, Ptakowski, & Maize, 2017)

1. I am concerned with my child's production of speech sounds.

2. My child currently makes frequent speech errors (75% or more of the time).

3. My child currently avoids social situations.

4. My child currently avoids saying specific words.

5. My child currently avoids speaking in certain situations.

6. My child is understood by family members and friends.

7. My child currently is understood by strangers.

8. My child currently is embarrassed by his/her speech.

9. M y child currently has difficulty making friends.

10. My child's speech currently prevents him/her from participating in daily activities, events or social situations.

Setting Functional Treatment Goals

http://1.bp.blogspot.com/-IsdT42VppWM/Veq_fTP5ZQI/AAAAAAAAG4Y/k8XUUOJX7vE/s1600/Goal%2BSet%2BTarget.jpg

https://www.asha.org/uploadedFiles/ICF-Speech-Sound-Disorder.pdf


What are person-/family-centered goals?

“Goals identified by the client, in partnership with the clinician and family, that allow participation in meaningful activities and roles”

What target family centered functional goals?

• “To maximize outcomes that lead to functional improvements that are important to the individual

• To optimize the individual’s potential to participate in meaningful activities

• To facilitate a partnership that ensures the individual and family have a voice in the care received and outcomes achieved

• To demonstrate to the payers the value of skilled services”

Traditional Functional Treatment Objectives

Traditional: Casey will use the accurate number of syllables in multisyllabic (2-4) words.

Functional: Casey will use the accurate number of syllables in multisyllabic (2-4) words when playing with Pokémon characters with his friend.



Traditional: Casey will produce fricative + vowel combinations with 85% accuracy.

Functional: Casey will produce with fricative + vowel 85% accuracy when saying the names of her siblings (Sam, Sarah), babysitter (Shea), and others in her family and friend circle.


Traditional: Casey will produce natural variation in prosodic intonation in 8 out of 10 multiword utterances.

Functional: Casey will produce natural variation in prosodic intonation in 8 out of 10 multiword utterances during show and tell and calendar/circle time in her preschool.

Summary

Shift of focus for practitioners and families

Programmatic changes needed in higher education

Relationships are the core of Family Centered Care

Remember the circle—care for the circle

Peers and social situations are imperative

Functional goals necessitate non-traditional methods


5. Q & AHeather Leavy Rusiewicz, Ph.D., CCC-SLP

[email protected]/SpeechandGestureLab

http://www.thinking-minds.net/change-mindset-asking-right-questions/

Documents

Supporting the Circle Apraxia Kids Webinar May 2018 FINAL ... · “Supporting the Circle: Families, Friends, and Functional Outcomes,” Presented by Heather Rusiewicz, PhD, CCC‐SLP,