Jana Childes M.S., CCC-SLP Speech-Language Pathologist, Instructor OHSU Northwest Clinic for Voice and Swallowing

Transcription

1 Jana Childes M.S., CCC-SLP Speech-Language Pathologist, Instructor OHSU Northwest Clinic for Voice and Swallowing

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4 1. Persons who regain functional speech after head and neck cancer surgery aren t interested in using computer technology for communication. 2. Speech generating devices are really expensive and are only useful to people who have no other way to communicate. 3. Only AAC specialists really know how to incorporate AAC goals into a communication treatment plan. 4

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6 Participants: 10 adult patients who were non-speaking following head and neck cancer surgery Procedure: Patients were provided a speech generating device (SGD) until they were able to vocalize or were discharged DynaMyte 3100 or MessageMate Methods: Observation, interviews, questionnaires, and clinical record review 6

7 MessageMate DynaMyte

8 Observations of communication methods, content, SGD use, and communication quality Writing and nonverbal methods were most common More than one method of communication was used during 94% of communicative interactions 8

9 Patients initiated 63% of communicative interactions involving the SGD Most SGD constructed messages were completed independently Preference for SGD Poor device position or malfunction Staff time constraints Limited staff familiarity with SGDs Preference for writing Benefits of SGD use Barriers to SGD use 9

10 Participants: 21 postoperative head and neck cancer patients Procedure: Patients received an SGD on POD#1, which remained with them until they were able to speak or were discharged Springboard SGD Methods: Data collection regarding device use, functionality, and technology related issues was completed on POD

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12 Summary of findings: Patients demonstrated improved abilities to use the SGD over the first 4 post-operative days Participants demonstrated satisfaction with the SGD during their hospitalization Messages were understood by the unit clerks over the call system Difficulty with device position and access in the ICU Patients requested that the device include more than one communication modality (i.e., method for novel message creation) 12

13 Single case study illustrating the AAC intervention for a patient who had undergone total laryngectomy and total glossectomy Described the grief response related to loss of verbal communication and the challenges of AAC intervention in relation to the grieving process 13

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15 Augmentative and Alternative Communication (AAC): Augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. People with severe speech or language problems rely on AAC to supplement existing speech or replace speech that is not functional. 15

16 Speech Generating Device (SGD): Any electronic communication system that provides speech output of the user s message. Voice output may be digitized or synthesized. Dedicated SGD: Systems designed specifically for communication (e.g., Dynavox Maestro, Lightwriter) Integrated SGD: Multifunctional with specialized software that allows them to act as a speech generating device (e.g., laptop computer with speech generating software). 16

17 I will discuss several products based on my clinical and research experience. I am not an employee of, nor do I have any financial relationship with any of the companies or products discussed today. 17

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19 1. Getting Ready Phase 2. Immediate Post-Surgical Phase 3. Speech Restorative Phase 4. Long-term AAC

20 Pre-operative counseling about the upcoming changes to communication, breathing, and swallowing is critical! Prepare for a period of speechlessness Communication rehabilitation is an ongoing process that will evolve over time 20

21 Communication Needs Assessment Native language Literacy Vision and Hearing Handwriting Computer skills

22 Gain attention Request tangible objects Communicate pain Request care (e.g., assistance to bathroom) Ask questions Participate in care planning Express novel information Social Interaction

23 Pilot study to explore the communication needs of nonspeaking hospitalized head and neck cancer patients Participants: 11 patients and 8 RNs Methods: Survey of each patient s perspective of: Overall communication difficulty Difficult topics to communicate Individuals with whom the patients had difficulty communicating 23

24 Patient report of communication strategies used during hospitalization: Writing and mouthing words most common 36% reported using more than one communication method 82% of patients reported experiencing an inability to communicate at some point in the hospitalization 24

25 Communication Needs: Most important: information about pain, breathing problems and need for suction, and bathroom Communication about psychosocial needs was next most important Fear, loneliness, grief, request to contact family member Social Communication 25

26 Effective Communication is Critical Time of significant anxiety and loss of control Effective Communication Facilitates: Participation in self-care and decision making Interaction with support systems Adaptation and community reintroduction

27 Investigation of anxiety, coping strategies, and coping behaviors of 75 patients undergoing head and neck cancer surgery Anxiety score on the day prior to surgery was comparable to that of persons admitted to a psychiatric facility for acute anxiety reaction Self-care preceded reduction in anxiety during the postoperative hospitalization

28 No longer considered to be simply a patient s right, effective communication is now accepted as an essential component of quality of care and patient safety. Only when messages are negotiated until the information is correctly understood by both parties can communication be considered effective Critical throughout the care continuum from admission through discharge 28

29 Beyond pen, paper, and communication boards

30 Communication Options Handwriting, gestures, and facial expression Low-technology communication aides Text to speech systems Educate patients and communication partners regarding strategies to facilitate communication

31 Talking Photo Album - Ablenet Go Talk Button Attainment Company Go Talk 9 Attainment Company ipad2 -Apple

32 Multiple text to speech applications for the ipod touch, iphone, ipad, and Android platforms Price ranges from free to very expensive Advantages: Portable, good quality voice, can create new messages and retrieve stored messages Disadvantages: Small screen, limited volume (may be improved somewhat with external speaker), requires precise fine motor movements

33 Most patients will use multiple communication methods Not the time to introduce new technology use familiar devices Help patients and family members manage their expectations Identify communication methods that can transfer easily from the hospital to a rehabilitation facility or home 33

34 Focus on developing functional verbal communication Ongoing evaluation of communicative effectiveness Where are the gaps? Could an AAC method fill in the gap?

35 Consider the following communication needs: Home: size, location, roles/responsibilities Telephone use Employment (type of work, environment, etc) Social Activities: clubs, organizations, volunteer work, religious activities, family gatherings Community: transportation, shopping, medical appointments Travel

36 When verbal communication is not possible or no longer functional May consider a dedicated or integrated communication system

37 1. Bridge the gap between surgery and functional speech. 2. Facilitate optimal communication rehabilitation. 3. Maintain functional communication in the event of a change in medical status, additional surgery or radiation, etc.

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39 Support group for individual laryngectomee survivors of larynx and other throat cancers Founded in 1996 with the goal to provide support and information about life after laryngectomy surgery from persons who have experienced it. 39

40 Total Laryngectomy: A surgical procedure for treatment of laryngeal/pharyngeal cancer wherein the entire laryngeal mechanism, from the hyoid bone to the upper rings of the trachea, are ablated. Requires separation of the respiratory and upper aerodigestive tract, and creation of a permanent tracheostoma for respiration. 40

41 Electrolarynx Voice Prosthesis Images courtesy of InHealth Technologies 41

42 Phase 1: Identify the communication methods and information related to the communicative effectiveness of persons who have undergone a total laryngectomy Phase 2: Learn about the experiences of persons who have undergone a total laryngectomy and use a speech generating device (SGD) as either a primary or secondary communication method 42

43 251 Participants Gender: 189 males 60 females Age: 39 years 95 years Mean: 66 years Years Post-Op: 0-57 years Mean 7.75 years Employment: Employed: 48 persons Unemployed: 200 persons 43

44 Radiation Chemotherapy Tongue Surgery Other oral surgery 62 Reconstruction 44

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46 Esophageal Speech Electrolarynx Voice Prosthesis Writing SGD Other Communication Method 46

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49 The Communication Effectiveness Survey Measures functional changes in communication Rating of perceived communicative effectiveness in 8 different communication situations 1 = not at all effective 4 = very effective 49

50 Conversing at a distance Conversing in the car Conversing when upset or angry Conversing in a noisy environment Conversing with stranger- telephone Conversing with familiar person - telephone Conversing with strangers - quiet place Conversing at home = Not effective at all, 4 = Very effective 50

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52 Participants: 26 persons who indicated that they use a speech generating device on the general Web Whispers survey Invited to complete a 13-item questionnaire related to their experience using a SGD. Goal: To gather qualitative data in regard to each individual s experience using a SGD, whether as a primary or secondary method of communication 52

53 Time Frame 15% 8% 23% Immediately after surgery Within 6 months after surgery 15% 6+ months after surgery 39% Difficulty with alaryngeal speech Change in speaking demands 53

54 Frequency Percentage Several times each day 58% A few times each week 14% Rarely 21% Other 7% 54

55 Training 13% 6% 44% 12% 25% Product Salesperson Speech-Language Pathologist Owner's manual I did not receive training Other 55

56 82 year-old female Communication methods: SGD and handwriting SGD: Dynavox Pros: very portable, voice quality and pronunciation are good, volume is adjustable Cons: aesthetics ( it is a device and looks like a device ), limited voice inflection, takes a while to become active, difficulty with touch screen 56

57 70 year-old male Communication methods: Electrolarynx, SGD SGD: Desktop computer with Etriloquist text to speech software Pros: Messages are easy to retrieve, volume is okay, easy to use on the telephone Cons: Stationary, programming is time consuming due to difficulty with typing and spelling 57

58 Female Communication Methods: Electrolarynx, TTY and relay service for telephone calls SGD: TTY Pros: Allows me to make important phone calls, relay operators are courteous and friendly Cons: Occasionally the person who answers will hang up because they don t understand the relay process 58

59 62 year-old male Communication Methods: SGD, handwriting SGD: Talking typewriter Pros: Voice quality is adequate, portable, good battery life, more efficient than handwriting Cons: Too big to fit in your pocket, intonation is awkward, programming is time consuming 59

60 59 year-old male Communication Methods: Alaryngeal voice, SGD SGD: ipad with Locabulary Pros: very portable, good battery life, easy to program, volume, free Cons: none 60

61 Many alaryngeal speakers experience communication situations where they feel that their verbal communication is ineffective Persons who have undergone a total laryngectomy are using computer technology for communication Speech generating technology can be a useful tool to fill in the gaps. 61

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63 Functional communication for AAC users depends on knowledge and skill in four interrelated areas Linguistic Competence Operational Competence Social Competence Strategic Competence 63

64 Mastery of both the native language and the linguistic code of the AAC system. Capturing the mental dictionary Message creation and organization Personalizing messages 64

65 Patient: Mrs. J is a 60-year-old female Communication Impairment: Dysarthria secondary to a partial glossectomy, flap reconstruction, and previous radiation. Communication Methods: Speech, SGD SGD: She recently received an ipad2 with Proloquo2go from her granddaughter. She has added a few personalized messages and organized them alphabetically. 65

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67 1. Discuss situations where she has had difficulty being understood 2. Formulate lists of messages used in these situations 3. Determine how best to label each message 4. Page organization 67

68 Refers to the technical skill required to operate the system Evaluate the skill level of each patient Technical skills include: on/off, launching speech generating program/app, adjusting volume, pressing speak, clearing messages, etc. Navigation between stored and novel messages, as well as between message pages 68

69 Patient: Mr. H. is a 71 year-old male Communication Impairment: Anarthria and aphonia secondary to total laryngectomy and total glossectomy Communication Methods: Handwriting, SGD SGD: Dynavox Maestro 69

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71 Began with the basics Novel message creation with word prediction Navigation between free typing and phrases Program message pages and buttons Review often and provide opportunity for practice 71

72 Refers to the social rules of communication Initiating, maintaining, and terminating interactions Turn taking Expression of wants/needs, social closeness, and information transfer 72

73 Patient: Mrs. E is a 68 year-old female Communication Impairment: Aphonia secondary to permanent tracheostomy dependence SGD: Lightwriter SL40 73

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75 Began with observation of use in conversation Education regarding components of conversation Practice initiating, maintaining, and terminating conversation Homework Reviewed practice conversations Practice facilitated increased comfort and confidence 75

76 Refers to the compensatory strategies required to communicate effectively in various communicative situations Transition between speech and SGD Clarification strategies 76

77 Patient: Mr. M. is a 73-year-old male Communication Impairment: Aphonia secondary to total laryngectomy. Communication Methods: Electrolarynx, SGD SGD: ipod Touch with Speak It 77

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79 Programmed specific vocabulary related to ordering auto parts Revisited the 3 strikes rule Began to wear his EL around his neck for easier transition between EL and ipod Pt. to show screen to his communication partner if background noise prevented them from hearing the speech output 79

80 Private pay vs. Medicare or insurance funding On funding applications, emphasize the medical and safety implications of being unable to communicate verbally Encourage patients and families to discuss communication technology options prior to purchase For patients with limited funding options, look into programs through the American Cancer Society, Easter Seals, or your state s public utility or telecommunications programs 80

81 The patient's current communication approaches do not permit him to convey the type and complexity of information required to independently complete his activities of daily living. He needs a method that would allow him to quickly communicate information about his medical status in the event of an emergency. He is currently unable to contact emergency services if an emergency occurred while he was by himself (either at home or in the community). 81

82 She needs a communication method that would allow her to quickly and efficiently describe medical symptoms and changes in medical status. Inability to do so could result in delay of medical care provision. His current communication method, handwriting, limits him to face to face communication with only literate, English speaking communication partners. 82

83 Many alaryngeal speakers will experience communicative contexts where they feel their speech is ineffective. Persons who have had a total laryngectomy are using technology for communication. AAC is a critical component of communication rehabilitation for head and neck cancer patients. 83

84 Thank you to my colleagues: Andrew Palmer Dr. Donna Graville Dr. Melanie Fried-Oken And especially to the members of Web Whispers for their support of this project 84

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86 Speak It (Future Apps, Inc.) $1.99 Locabulary (Red Mountain Labs, Inc) free Proloquo2go (Assistive Ware BV) $ Assistive Chat (Chee Ng) $

87 Speak It To Me (Industry Dynamics) free ispeech (ispeech, inc.) free Text to Speech Plus (Zakia Mahzabin) $0.99 Verbally ipad only free Etriloquist text to speech for PC 87

88 MessageMate DynaMyte 3100, Dynavox Maestro Springboard Lightwriter SL40 ipod, ipad2, iphone Go Talk Button, Go Talk 9 Talking Photo Album 88

89 Beukelman, D.R., Garrett, K.L., & Yorkston, K.M. (2007). Augmentative Communication Strategies for Adults with Acute or Chronic Medical Conditions. Baltimore, Maryland: Paul H. Brookes Publishing Company. Donovan, N.J., Kendall, D.L., Young, M.E., & Rosenbeck, J.C. (2008). The communicative effectiveness survey: preliminary evidence of construct validity. American Journal of Speech-Language Pathology, 17, Dropkin M. J. (2001) Anxiety, coping strategies, and coping behaviors in patients undergoing head and neck cancer surgery. Cancer Nursing, 24(2), Fox, L.E. & Rau, M.T. (2001). Augmentative and alternative communication for adults following glossectomy and laryngectomy surgery. Augmentative and Alternative Communication, 17,

90 Happ, M.B., Roesch, T.K., & Happ, S.H. (2005). Patient communication following head and neck cancer surgery: a pilot study using electronic speech-generating devices. Oncology Nursing Forum, 32(6), Light, J. (1989). Toward a definition of communicative competence for individuals using augmentative and alternative communication systems. Augmentative and Alternative Communication, 5(2), Rodriguez, C. & Blischak, D.M. (2010). Communication needs of nonspeaking hospitalized postoperative patients with head and neck cancer. Applied Nursing Research, 23, Rodriguez, C. & Rowe, M. (2010). Use of a speech-generating device for hospitalized postoperative patients with head and neck cancer experiencing speechlessness. Oncology Nursing Forum, 37(2), The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission,