Keywords:
Aphasia - Patient centered care - Collaborative research teams - Mixed Methods
Learner Outcomes: As a result of this activity, the reader will be able to (1) discuss means for collaborating
with people with aphasia, their families, clinicians and researchers in the research
process; (2) discuss facilitating strategies for increased patient partner involvement
and interaction in research teams; (3) discuss facilitating strategies for increased
patient partner communication in research teams.
Researcher-initiated investigations often have little or no input from the groups
who will be affected by the results of the research. Hinckley et al[1] stated that patient-centered research encompasses the consumers' (i.e., patient,
family, caregivers) perspectives in shared decision-making. Patient-centered care
in clinical practice incorporates the patient's viewpoint as a priority in all decision-making.
Patient-centered care focuses on (1) the patient as an individual; (2) patients are
granted a voice in decision-making and not solely by clinicians and researchers; and
(3) decision-making becomes a shared responsibility.[1] Patient-centered care incorporates evidence-based practice in that it involves patient
engagement and patient perspectives at the forefront of care and research. In addition,
Mitchel et al[2] stated that patient-centered care is the “gold standard” of quality care.
Orgas[3] affirmed that more quantitative and qualitative research is needed to document what
works best for implementing patient-partners and a patient-centered care approach
into the research environment. This approach emphasizes that patients have a right
to decision-making in research that affects them and also that research is a shared
responsibility between researchers and patients.[1] Involving patients with a patient-centered approach in the entire research process
has become mainstream in clinical fields such as medicine.[4]
[5]
[6] Turnbull et al[5] indicated that patient involvement in research is a collaborative process among
patients and researchers throughout the entire research endeavor.
The patient-partner research trend was noted in the United Kingdom by researchers
in the British Medical Journal (BMJ)'s Editorials and Education and Debate sections in 1999 [volume 319(7212)] when they
pioneered a thematic issue on this topic. Smith (BMJ editor) stated, “More sensibly, there are three ways in which doctors may consult
with patients. In the paternalistic model, the doctor decides what to do. In the informed
model, the patient decides after the doctor explains the options. This theme issue
of the BMJ celebrates and explores a middle way: the shared model, where doctor and patient
decide together what action to take.”[7] For example, Wilson[8] stated that, “… it has long been accepted that a person with a particular condition
can play an important, and sometimes a leading, part in their own care and in the
management of their disease….” The BMJ now requires a patient and public involvement statement in all of its publications.
Goodare and Lockwood[9] stated that, “The implications for medical journals are clear. Besides insisting
on informed consent from trial participants, they should set new standards for consumer
consultation at all stages of clinical research submitted for publication.” Vat et
al[10] affirmed that patient-partners are crucial in helping, designing, and managing research
projects.
Vat et al[10] also believed that patient-partners can be engaged at all levels of therapeutic
care and research. Once considered as individuals who had research performed on them,
patients are now included in the entire research process including design, development
of research, planning, and dissemination of results.[11]
Turnbull et al[5] outlined five levels of patient-partner research participation. These levels can
also be applied to patient-centered clinical therapy. Level 1 reflects minimal involvement
with no decision-making; levels 2 and 3 reflect family members becoming involved as
advisory board members and occasionally as reviewers or consultants; level 4 is where
patient-partners act as on-going consultants; level 5 is where patient-partners act
as co-researchers; and level 6 is where the researchers serve as ongoing consultants
to the patient-partner researchers.
Similar to Turnbull et al,[5] Singler et al[11] provided four models of patient engagement including patients as advisory board
members, as steering committee members, and as co-investigators. Singer et al's[11] levels of patient involvement include (1) patients as subjects; (2) patients as
consultants; (3) patients as advisors; and (4) patients as researchers.
Smith et al[6] identified numerous instances where patient-partners in research served merely as
tokens to the other end of the spectrum where patient-partners are valued with full
empowerment and involvement. When patients or others who will be affected by research
are incorporated into planning, prioritizing, and/or preparing research methods or
activities (i.e., patients as co-investigators), several potential benefits can be
achieved.[4]
[5]
[9]
[12]
[13]
[14]
[15] A review of several studies of patient-centered care programs and individuals with
aphasia follows; please note that most of these care programs do not fully embrace
patient-centered care and their limitations are noted.
Patient-Centered Care Programs and Aphasia
Patient-Centered Care Programs and Aphasia
The patient-centered care approach revolves around the two key principles of patient
rights and patient voices. The patient-centered approach to research incorporates
these aspects. It is this integration into research that has been problematic for
some researchers, that is, patient-centered research is patient driven and not researcher
driven.[1] In addition, patient-centered research is clinically focused on patient outcomes.
Hence, a review of patient-centered care will provide background for the types of
research and communication strategies to use with individuals with aphasia in patient-centered
research.
Stroke and aphasia are some of the leading contributors to adult disabilities.[16] Stroke survivors experience long-term difficulties at many points in their recovery
and rehabilitation. These difficulties may include memory loss, cognitive impairments,
communication difficulties (in any or all modes), social isolation despair, inability
to carry out activities of daily living, and other issues.[16] A common complaint among individuals with aphasia and their family members/caregivers
is that after short-term therapy is finished, the individual with aphasia and their
family/caregivers feel that they are abandoned.[1]
Nayeri et al[16] found that patient-centered care programs were more effective than traditional programs
with family members being more adherent to rehabilitation programs. Better health
outcomes were reported for those who participated in the family and patient-centered
care program, e.g., fewer instances of pneumonia, respiratory infections, reduced
bedsores, motor dysfunctions, urinary tract infections, and stroke recurrence. The
bridge between patient-centered clinical practice and researching individuals with
aphasia still needs to be conducted.
Moffatt et al[17] developed an electronic daily planner using an approach involving active patient
participation for individuals with aphasia. Their plan was to develop technology that
could be easily used and adopted by individuals with aphasia and support activities
of daily living after discharge from a hospital and/or therapy. The study of Moffatt
et al[17] provides a minimal person-centered care approach. Although Moffatt et al's[17] intent was to assist individuals with aphasia, the participatory design was still
researcher directed as the authors consulted with only one individual with aphasia
in identifying areas where technology could be put to use. Hence, patient-centered
research should incorporate the voices of multiple individuals with aphasia.
It has been documented that individuals with aphasia after a stroke are more prone
to social isolation.[18]
[19]
[20] Individuals with aphasia may also experience reduced quality of interactions, less
contact with others, and diminished communication opportunities. All communications
with individuals with aphasia need to be aphasia-friendly, accessible, and understandable.
Reduced abilities to communicate may lead to increased instances of social isolation.
Buhr et al[18] developed an aphasia-friendly social networking application for individuals with
aphasia and their family members. They utilized a model that emphasized active participation
and action. The participatory action model addresses issues pertinent to the stakeholders:
in this case, individuals with aphasia. Buhr et al[18] gained insight into developing their social networking application. Buhr et al[18] found that their web application, AphasiaWeb, was successful in assisting individuals
with aphasia interact with friends, share experiences, and share their identity. Even
individuals with low linguistic ability were able to access the AphasiaWeb application
through the use of photographic posts. Buhr et al[18] addressed patient-centered therapy through consulting with individuals with aphasia.
Both the approaches used by both Moffatt et al[17] and Buhr et al[18] (according to the levels proposed by Singler et al[11]) are at Singler et al's second level and Turnbull et al's[5] levels 2 and 3 in patient-partner research, i.e., demonstrating only minimal involvement
with patients[5] as research consultants only. These studies represent only basic levels of patient
participation[4]
[11] and patient-partner research engagement.[21]
[22]
[23]
[24]
[25]
[26] Other levels include collaboration in the evaluation of treatment programs, participation
in data collection, and offering guidance, and the involvement includes participation
as co-researchers in the investigation.[23]
[24]
Harmon et al[19] incorporated some aspects of patient-partner therapy through the use of social validation
and client interviews (i.e., patient voices). Their social validation approach stresses
the importance of speech treatments for the “direct consumer” (i.e., the individual
with aphasia). The first level of social validation is where goals are important to
consumers (i.e., patient driven). Collaborative identification is crucial. Another
step was that Harmon et al[19] asked patient-partners what therapy techniques were deemed suitable (i.e., to give
the patient choices in their therapy). Harmon et al[19] also provided choice of techniques to patient-partners for use during intervention.
The features, lacking by Harmon et al,[19] were to allow the patient-partners to participate in data collection and offer feedback
and guidance in forthcoming therapy plans. Consequently, patient rights through patient
involvement were missing.
Ross et al[25] developed an aphasia-accessible yoga class for individuals with aphasia. Ross et
al[25] found the following barriers to implementing this patient-centered approach to developing
a communicatively accessible group activity: (1) lack of collaboration with key stakeholders;
(2) lack of aphasia awareness with yoga instructors; (3) non–aphasia-friendly advertising;
(4) limited support from yoga providers; and (5) limited knowledge of aphasia and
stroke from the yoga instructors, that is, the complex communication requirements
of working with individuals with aphasia. By making communication accessible, Ross
et al[25] made the point of moving beyond a clinician-directed approach to a client-directed
approach, the key element behind person-centered therapy. While applauding their[25] efforts at incorporating patient voices, their study lacked patient involvement
other than as research participants. In conclusion, the participatory action model
is, in essence, a patient-centered approach to solving clinical problems, but its
implementation must be complete by having individuals with aphasia as co-investigators.
When patient-partners experience a communication disability like aphasia, there are
special challenges to address in the preparation, training, and collaboration processes.[26] Perhaps the first and most obvious challenge is the communication issue itself.[27] All aspects of communication must be done in an aphasia-friendly and accessible
manner, from the initial invitation to collaborate to training formats, and the processes
used to support conversation and collaboration.
Vat et al[10] believed that patient-partners can be engaged at all levels of therapeutic care
and research. Once considered as individuals who had research performed on them, patients
are now included in the entire research process including design, development of research,
planning, and dissemination of results.[11] Smith[7] stated that, “Over the last decade, projects involving patient-partners in research
have varied from mere tokenism and undervaluation to full involvement and empowerment
of patient participants—the former, a subject of criticism, and the latter, promoted
as an ideal.”
When patients or others who will be affected by research are incorporated into planning,
prioritizing, and/or preparing research methods or activities (i.e., patients as co-investigators),
several potential benefits can be achieved. Research activities are typically initiated
by the researcher, with often little or only indirect input from the groups who will
be affected by the results of such research. Potential benefits can be achieved when
involving patient-partners: (1) enhanced quality and relevance of the research[12]; (2) increased research relevance to family members[5]; (3) formulating research questions[10]; more attuned research questions[15]; (4) enhanced application of findings to practice[15]; (5) minimization of logistical problems[5]; (6) measurement and outcome measure selections[4]; (7) increased/improved recruitment and retention (i.e., less attrition) of research
participants[14]
[15]; and (8) balancing potential biases stemming from investigator-initiated research.[13]
Recommended practices for incorporating patient-partners in research, based on the
current literature, include the following: (1) patient-partners and researchers should
be prepared beforehand in separate meetings, so that both can approach a joint dialogue
with better understanding of research processes. Overcoming communication barriers
is essential.[28]
[29]
[30] (2) Advance training to prepare researchers and patients should be done with both
groups together. Accessibility and active participation in the research process enhance
patient-partner continuation in the project.[18]
[19]
[20] (3) Ongoing relationship between informed researchers and patient-partner groups
is one of the most consistently agreed upon recommendations.[1] (5) Ongoing relationships can be accomplished through regular meetings, workshops,
or conferences, where patient-partners and researchers come together to discuss research
needs and concerns.[31]
[32]
[33]
[34] In summary, Hinckley et al[1] stated that, “Person-centeredness in clinical practice incorporates the values of
clients into a shared decision making approach. The values of person-centeredness
can be extended into the realm of research when the views of consumers toward relevant
and important research topics are sought”.
Appreciative Inquiry
Making communication accessible can be endeavored through the use of appreciative
inquiry (AI). Tools such as supported conversation[27] and applying evidence-based approaches for aphasia-friendly written materials[28]
[29]
[30] are other examples. Graphic supports, alternative response modes, and video are
also critical elements to engagement.[31]
AI is based on the following principles: (1) “discovery”—a focus on what is going
well; (2) “dream”—envisioning an ideal future; (3) “design”—identify what we can do
to move to that future; (4) “actions”—creating specific action steps; and (5) implementation.[32] AI is a process for enhancing discussions moving through phases: (1) discovery (i.e.,
exploring the issues of aphasia, patient-partners in research, and collaboration among
patient-partners and researchers); (2) dreaming (i.e., what could happen and what
is going well); (3) design (i.e., planning); (4) action (i.e., how do we get there);
and (5) implementation. AI is a means by which everyone can participate in meaningful
discussions where best practices and valuable experiences are shared and interpreted.[32] AI shifts the focus from problems to discovering what works well within a community
or organization. It comes from a bottom-up approach framework.[35]
[36]
[37]
[38] Schmied et al[39] stated that, “Appreciative inquiry is a transformative approach to change which
focuses on collaboration and identifying and working with the positive aspects of
organizations, or communities, rather than the problems.” Resulting communication
issues may involve cognitive and language impairments, despair from social isolation,
difficulties with activities of daily living, and other problems.[16] The examples are few, however, and our knowledge on strategies, tools, and techniques
will need to expand.
Despite the communication challenges, people with aphasia can be collaborators, co-developers,
and co-researchers given appropriate supports. These levels of participation vary
in their degree of involvement and participation. The first level is to serve as an
advisor, giving recommendations and guidance. People with aphasia have successfully
acted as advisors on research projects and functioned in a research advisory group.[21]
[22] People with aphasia can also act as collaborators in the evaluation of a treatment
program[31] or stroke and disability Web sites[23] (i.e., actively participating in collection of information and offering guidance).
People with aphasia have also participated as co-researchers by sharing their experiences
and perceptions on return to work[32] or on therapy discharge[24] and offering ideas on research questions and research design. As a final example,
people with aphasia have collaborated with researchers to identify their own priorities
for research.[1]
[36] These examples demonstrate that people with aphasia can participate at every level
of research.
Aims
We wished to address the issue of aphasia research and patient-partners with aphasia
and how patient-partners have typically been neglected in the research process.
The main purpose of this project was to describe methods that were applied in preparing
researchers, clinicians, and patient-partners to successfully collaborate on research
teams.
Our aim was to describe practices of embracing patient-partners in research through
a conference designed to bring patient-partners and researchers together using a process
of AI. Specifically, the AI process will be addressed qualitatively (e.g., observations
and transcripts) and quantitatively (e.g., webinar survey and conference rating survey)
with all participants from the project. Therefore, the specific research aims posed
were as follows:
-
Clinicians and researchers will successfully develop collaborative research teams
with patient-partners utilizing the AI process during pre-conference, conference,
and post-conference events.
-
Patient-partners (i.e., individuals with aphasia, spouses, family, and/or caregivers)
will successfully develop collaborative research teams with clinicians and researchers
utilizing the AI process during pre-conference, conference, and post-conference events.
METHODS
Participants
Project Building Research Initiatives by Developing Group Effort (BRIDGE) included stakeholder participation from people with aphasia, their family members,
aphasia clinicians, and aphasia researchers in a research conference. The conference
included a total of 109 participants with 38 males, 71 females, 63 patient-partners,
23 researchers, and 23 clinicians.
This project abided by the university's IRB policies of informed consent. All participants
were informed of all aspects of the project. All participation was voluntary with
everyone's complete participation. The authors report no conflict of interest (see
Conflict of Interest statement).
Conference Participation
Project BRIDGE entailed three phases: a three-part self-study webinar; an in-person 2-day conference;
and follow-up webinar conversations (i.e., to facilitate the group projects). The
three-phase experience focused on initiating patient-partner research teams. Phases
included pre-conference webinars (65 clinicians and researchers and 81 patient-partners),
a live conference (58 patient-partners and 44 clinicians and researchers), and follow-up
conference calls after the live conference (33 participants with 3 members for each
of the 11 teams consisting of at least one clinician, one researcher, and one patient-partner).
Follow-up conference call participants did not include all conference attendees as
logistically this would not have been possible. Therefore, a representation of all
groups was present for the follow-up conference calls.
Phase 1: Webinars
Webinar Purpose
The purpose of the webinars was to prepare the participants (researchers, clinicians,
and patient-partners, i.e., individuals with aphasia and their family members) for
participation as a research team member at the conference. To develop collaborative
research teams, a series of three webinars were developed for both researchers/clinicians
and patient-partners (i.e., for a total of six webinars).[40]
[41] All attendees were required to view the webinars prior to participating in the conference.
The three patient-partner webinars and researcher/clinician webinars were developed
to parallel each other in terms of content. However, the patient-partner–based webinars
were more general.
Patient-Partner and Researcher Webinars
Patient-partner webinar topics included (1) what is research; (2) what do we know
about aphasia research; and (3) how can you contribute to research. The researcher-based
webinars were more detailed: (1) how involving patient-partners benefits research;
(2) how to involve patient-partners in research—general models and approaches; and
(3) tools and strategies for involving people with aphasia (monolingual and bilingual).
All webinars were completed in 1 hour or less and included the following format of
an outline to introduce the lesson topics, content, and webinar satisfaction survey
questions. All conference participants completed all required webinars prior to attending
the conference (see [Table 1]).
Table 1
Patient-partner and Researcher Webinar Topics
|
Patient-partner webinars
|
Purpose
|
Researcher webinars
|
Purpose
|
|
1. What is research?
|
1. Identify three steps of research
2. Know the meaning of “collaborative research”
3. Discuss different ways for consumers and researchers to collaborate
4. List at least two questions one could ask a researcher
|
1. How involving patient-partners benefits research
|
1. Define collaborative research
2. List levels of consumer participation in research
3. Discuss potential benefits and barriers of collaborating with consumers in research
|
|
2. What do we know about aphasia research?
|
1. Overview of best practice guidelines for aphasia:
a. Assessment
b. Education and counseling
c. Treatment
|
2. How to involve patient-partners in research: general models and approaches
|
1. Discuss role expectations for patient-partners
2. Identify three critical principles of plain language and aphasia-friendly materials
3. List three techniques for ensuring success with a patient advisory group
|
|
3. How can you contribute to research?
|
1. Discuss roles patient-partners can participate in research.
2. List at least two questions one could talk about research
|
3. Tools and strategies for involving people with aphasia (monolingual and bilingual)
|
1. Explore and discuss available materials that can help researchers support the inclusion
of people with aphasia
2. Explore and discuss materials that can help researchers support the inclusion of
culturally and linguistically diverse individuals with aphasia (e.g., see Communication Disorders in Spanish Speakers: Theoretical, Research, and Clinical Aspects
[48])
|
Webinar Surveys
The webinars were publicly available online before the conference and all participants
were asked to complete a webinar satisfaction survey for each webinar. Each webinar
survey contained four to six questions with a 5-point Likert scale response option.
Each webinar survey included one question about the overall quality of the webinar
(“Overall, how would you rate this webinar?), where 1 = poor and 5 = excellent. Please
see [Table 2] for overall mean quality ratings for each webinar. The remaining webinar survey
questions were specific to the content of each webinar, and asked the participant
to rate their comprehension of topics addressed in the webinar, on a scale where 1 = don't
understand it at all and 5 = completely understand. [Table 2] also shows the overall mean comprehension ratings for each of the webinars.
Table 2
Ratings of the Webinars by Conference Participants
|
Online webinars
|
Total number of respondents
|
Response rate (responses/total participants)
|
Mean content comprehension
(scale = 1 to 5;
5 = completely)
|
Mean quality rating
(scale = 1 to 5;
5 = excellent)
|
|
Researcher webinars
|
|
1. How involving patient-partners benefits researchers?
|
64
|
64/102 = 62.74%
|
4.48
|
4.61
|
|
2. How to involve patient-partners in research: general models and approaches?
|
47
|
47/102 = 46.07%
|
3.85
|
4.68
|
|
3. Tools and strategies for involving people (monolingual and bilingual) with aphasia
in research
|
35
|
35/102 = 34.31%
|
3.96
|
4.21
|
|
Patient-partner webinars
|
|
1. What is research? How do you get involved?
|
76
|
76/102 = 74.5%
|
4.45
|
4.57
|
|
2. What do we know from aphasia research?
|
81
|
81/102=79.41%
|
4.08
|
4.50
|
|
3. How can you contribute to research?
|
64
|
64/102=62.74%
|
3.98
|
4.54
|
Phase 2: In-Person Conference
We conducted a 2-day conference which was designed based on an AI approach, incorporating
the four phases of discovery, dream, design, and actions.[32]
Conference outcomes were measured by completing evaluation forms (see [Table 3]). Eight questions were developed and rated using a 1- to 5-point Likert scale (1
being poor and 5 being excellent) regarding conference satisfaction.
Table 3
Patient-Centered Outcomes Research Institute (PCORI) Conference Ratings
|
Questions
|
Overall (mean; 1–5 point scale)
|
|
1. The process facilitated the creation of research teams.
|
4.38
|
|
2. The breaks were the right amount of time.
|
3.63
|
|
3. The meeting space was accessible.
|
4.44
|
|
4. Given the purpose of the meeting, there was the right number of speakers.
|
4.15
|
|
5. Overall, the language used during the conference was aphasia friendly.
|
3.74
|
|
6. By the end of the conference, I believed that our team could make a contribution
to research.
|
4.60
|
|
7. It was important to do the webinars in advance of the meeting.
|
3.99
|
|
8. There were enough communication supports at the conference.
|
3.94
|
The discovery portion of the conference was addressed through a keynote presentation
on “what is going well in collaborative research in aphasia.” A second keynote presentation
addressed the “dream” of “what would it be like if aphasia research was collaborative?”
During the afternoon of the first day, all conference attendees “shopped” and “shared”
research ideas and settled into research teams based on interest. From the end of
the first day through the entire second day of the conference, each team created a
research question and a set of action steps including people, activities, and estimated
dates. The groups were moderated by the invited speakers and the principal investigator
and the co-principal investigator (both authors) who circled the rooms and group.
Richardson et al[42] introduced the patient intervention comparison outcome (PICO) system to guide clinical research questions using evidence-based medicine (EBM).
Patient was later modified to become population.[43] The PICO framework (population, intervention, comparison, outcome) was used to help research
teams generate measurable and attainable research questions.
Appreciative Inquiry
AI is a process for enhancing discussions while moving through groups into four phases.
Essential phases include the following: (1) plan exploration (Discovery phase)—exploring
the issues of aphasia, patient-partners in research, and collaboration among patient-partners
and researchers; (2) plan discussion: what is occurring and what is occurring well
(Dream phase); (3) plan formulation and design (Design phase); (4) plan course of
actions; and (5) implementation. All conference participant language was audio recorded,
transcribed, and analyzed (e.g., from the conference transcripts, conference calls,
and email communications).
Phase 3: Follow-up Conference Calls
Two follow-up conference calls with each research team occurred from 4 to 7 months
after the conference and 3 months apart from each other. The purpose of the calls
was twofold (i.e., to further each teams' research progress and to monitor participant
engagement). Participants on the call included one to two members from each participant
types (individual with aphasia, caregiver, researcher, and clinician). Hence, each
team typically had between four to six team members on a call.
The conference calls were scheduled for 2-hour blocks with half of the teams (teams
1–6) participating in a morning call and the second half of the teams (teams 7–11)
participating in an afternoon call. The researchers participated in all the calls.
The conference calls were audio recorded and transcribed. Calls lasted approximately
2 hours each. Structure and format were kept identical as possible among the morning
and afternoon calls and across the different time periods (call 1 at 4 months vs.
call 2 at 7 months). The calls were structured around each team's “objectives, updates,
roadblocks, and suggestions.” The topic distributions occurred as a result of the
participants' input. Suggestions took the form of action steps to take. All on the
conference call were able to offer suggestions. The researchers then summarized the
suggestions for the teams to act upon.
Rater Reliability
From the transcriptions, the researchers developed four general categories through
coding of the responses: (1) roles and responsibilities; (2) goals, actions, and timelines;
(3) communication techniques; (4) research-specific issues. Iterative categorization
was used. This is where investigators perform the following steps in data coding:
(1) data reduction (simplify the data); (2) data display (organize the data); and
(3) data verification (the data are interpreted for plausibility).[41]
[44] Each of the steps was followed by the researchers collaboratively.
Coding or indexing the individual comments was tabulated manually. The two researchers
met and discussed and agreed upon the coded themes over four sessions (i.e., 4 hours
in total) until 100% consensus was achieved for each of the steps 1 to 3. Each rater
had performed intra-rater agreement. Reconciliation of items was achieved through
discussion and consensual agreement. The researchers matched sentences to the identified
general categories (1, roles and responsibilities; 2, goals, actions, and timelines;
3, communication techniques; and 4, research-specific issues) when indexing all the
individual comments.[45] Individuals with aphasia participated in every conference call. Equal representation
from all the groups was sought (i.e., individuals with aphasia, patient-partners,
researchers, and clinicians) for when the conference calls occurred.
RESULTS
Phase 1: Webinar Development
All webinars were verified for content validity by a review of experts in the fields
of aphasia, patient-partner teams, and/or multiculturalism. The reviews were conducted
prior to the conference to confirm content validity. Experts included seven researchers,
one clinician, and six individuals with aphasia and/or their partners. The review
and rating questions inquired about difficulty of the material, understanding of the
material, and/or appropriateness of the material. The reviewers were asked the following
questions in their appraisal: (1) Does the content address the objectives stated at
the beginning of the webinar? (2) Is the content appropriate for the audience? (3)
Is the content clearly communicated? (4) Considering the objectives, is there any
information that is missing? (5) Other comments you have about the webinar. The webinars
were modified based on the suggestions from the reviewers. Overall, the reviewers
rated the webinars as “very good” to “excellent” in quality (average rating for all
webinars was 4.52). Comprehension ratings were obtained for both patient participants
and researchers (average rating for all content comprehension was 4.37).
Phase 2: Conference Outcomes
At the end of the 2-day conference, 11 research teams were formed. The conference
attendees included 33 people with aphasia, 25 family members, 18 clinicians, and 26
researchers. There were a total of 102 participants at the live conference (excluding
student communication assistants and speakers). Participants came from across the
United States. Conference participants were divided into 11 teams with each team represented
by individuals with aphasia, family members, researchers, and clinicians. The 11 research
teams that were developed consisted of (1) identity after aphasia; (2) caregiver training;
(3) stories of recovery; (4) recovery trajectory; (5) yoga; (6) telepractice; (7)
naming treatment; (8) what happens in the long term; (9) life participation approach;
(10) strategies for quality intervention; and (11) educating stakeholders.
There were a total of 79 completed conference evaluation forms that were returned
at the end of the conference. In one instance, the evaluation form was completed by
one couple (the combined views of a person with aphasia and his/her family member).
Please note that all family members at the conference were spouses. Of the remaining
78 evaluations, 16 were from clinicians, 17 were from family members, 25 were from
individuals with aphasia, 17 were from researchers, and 3 were from speakers. Individuals
with aphasia represented the full range of severity (from mild to severe disability).
All clinicians worked in medical settings with individuals with aphasia and their
patient-partners. All researchers were university based and aphasiologists. Conference
ratings ranged from 3.63 to 4.60 on a five-point scale of satisfaction (i.e., 1 being
very unsatisfied to 5 being very satisfied). See [Table 3] regarding the overall conference ratings.
Each team included at least one researcher, one clinician, and at least one person
with aphasia and/or family member. Each research team generated a completely formed
research question along with several action steps to take in the immediate few months
after the conference. [Table 4] includes the research topics and research questions.
Table 4
Research Topics and Research Questions
|
Research Topics
|
Research Question
|
|
1. Identity after aphasia
|
Does starting a life coaching program before rehabilitation discharge improve self-esteem,
communication interaction, and quality of life?
|
|
2. Caregiver training
|
What is the best format of co-survivor support at each phase of the aphasia journey?
|
|
3. Stories of recovery or stories of aphasia
|
Do clinicians who receive training in personal narrative methods have a larger impact
than untrained clinicians on communication and quality-of-life measures in patients
who have aphasia due to stroke?
|
|
4. Recovery trajectory
|
What is the effect of video documentation on recovery trajectory during the first
year for persons with aphasia and their caregivers' perceptions of recovery compared
with usual care?
|
|
5. Yoga
|
In people with aphasia and co-survivors, will 8 weeks, twice per week, 90 minutes
per session of aphasia-friendly yoga demonstrate benefits on quantitative and qualitative
measures of stress, pain management, and relationship mutuality?
|
|
6. Telepractice
|
Do people with aphasia report increased scores on the Patient Specific Functions Scale
following aphasia-friendly YouTube vs. clinician-directed training with selected applications
and technology?
|
|
7. Naming treatment
|
Are RTMS or other brain stimulation approaches more effective than traditional word-finding
therapy for improving word-finding?
|
|
8. What happens in the long term for patients with aphasia (friendship)
|
How does aphasia affect maintenance and development of friendship over time?
|
|
9. Life participation approach
|
What do people with aphasia experience at and post-discharge from acute care using
survey methodologies and semistructured interviews?
|
|
10. Strategies for quality of life interventions
|
What are our themes that define thriving in PWA and what are the strategies they are
using to support/achieve that?
|
|
11. Educating stakeholders
|
Does video module training improve stakeholders' understanding of comfort with aphasia?
|
Phase 3: Follow-up Conference Calls and Communications
The first conference call revealed that most of the conversations centered on roles
and responsibilities (32%) and communication techniques (32%). The second conference
call revealed a change in conversations: research-specific issues (30%); roles and
responsibilities (27%); and goals, actions, and timelines (24%). See [Tables 5] and [6] for these results.
Table 5
First team member conference call
|
Category (percentage of responses)
|
Examples
|
|
1. Roles and responsibilities
(32/100 = 32%)
|
• Composition of team is critical
• Importance of having an “accountability partner”
• Match/Assign key players for particular agenda items/assignments
• Give permission to other team members to help move team forward (relates to “accountability
partners”)
• Be clear on roles and tasks
• Role changes: PWA entering clinic bldg. as a “researcher” instead of “just a client”
• Role recommendations: how to be a leader of a multi-stakeholder research group
|
|
2. Goals, actions, and timelines
(23/100 = 23%)
|
• Action list should include video
• Frequency of meetings in beginning vs. later in process?
• Set the schedule right away
• Set small deadlines
• Connect research to local people/support group
|
|
3. Communication techniques
(32/100 = 32%)
|
• Best practices for video documentation and communication
• Consistent email organization/template—introduce initially, then use consistently
• Options for posting videos, such as private Facebook group or other easily accessible
online location
• Videoconference resources
• Frequent communication
• Send out short video clip updates
• Sharebox or Dropbox folder
|
|
4. Research-specific issues
(13/100 = 13%)
|
• Evolution of question
• How to complete literature review
• Evolution of different types of projects: projects starting from a blank slate,
projects that were already started
|
Table 6
Second Team Member Conference Call
|
Category (percentage of responses)
|
Examples
|
|
1. Roles and responsibilities
(27/100 = 27%)
|
• Worked with the concept of caregivers and information that is needed by caregivers
and persons with aphasia throughout the continuum of care
• Worked on the IRB application
• Behind the scenes work, making collaborative connections with a specialist
|
|
2. Goals, actions, and timelines
(24/100 = 24%)
|
• Made progress on the timeline for the literature review
• Made progress on team coaching this summer
• Put together (as a team) a survey for SLPs trying to determine the speech-language
pathologists' role in assessing and/or managing friendship with their clients with
aphasia
• A.E. stepped up to be the leader
• More planning at the conference before the team left as to roles and responsibilities
|
|
3. Communication techniques
(19/100 = 19%)
|
• Trouble connecting with team members
• Trying to stay in good communication with everybody
• Put the essence of all meetings in a video
• Communicating via e-mail
• Did not plan in how to stay in contact
|
|
4. Research-specific issues
(30/100 = 30%)
|
• Recognize JK, now who's on this call, who has done a fabulous job of doing some
literature search and getting back to her research skills that she had before a stroke
• Work through research ideas and narrow down ideas
• Looking at some bigger grants to start the study
• Examining literature and finding the right research question
|
Appreciative Inquiry
AI was documented from the conference transcripts and two follow-up call transcripts.
Project BRIDGE followed AI steps as patient-partners, researchers, and clinicians
completed the webinars and attended the conference (discovery phase), envisioned the
future by attending and participating in the conference (dream phase), designed the
research studies together in collaboration among all participants (design phase),
and created specific action steps to be completed and also began implementation of
those steps (e.g., participating in the conference and conference calls).[45]
[46]
[47]
DISCUSSION
Initial immediate outcomes suggested that the methods used (webinar preparation, small
group work, and aphasia-friendly principles) supported the creation of the 11 collaborative
research teams for all participants. The first research question stated that researchers
and clinicians would be able to form collaborative research teams with patient-partners
(i.e., individuals with aphasia, spouses, family, and caregivers). By the culmination
of the project, 11 research teams with all groups had formed and continued to work
as teams throughout the entire project cycle. Data from the webinars, conference outcomes,
follow-up calls, and AI transcripts indicate moderately high ratings with the webinar
trainings and moderately high to very high conference ratings. Comments obtained from
the follow-up calls indicated continued support and effort for the research team goals
and support for patient-partners.
The second research aim stated that patient-partners (i.e., individuals with aphasia,
spouses, family, and caregivers) would be able to form collaborative research teams
with researchers and clinicians. The patient-partners demonstrated considerable effort
and determination during the webinar trainings with almost 80% completing all three
webinars. Some issues from the conference indicated that communication and conference
supports needed further enhancing. However, overall patient-partners appeared highly
engaged and satisfied with the conference as indicated by their comments obtained
in the follow-up call transcripts. Patient-partners were highly engaged before, during,
and after the conference (hence, the entire project).
Webinar Outcomes
Project BRIDGE utilized three pre-conference self-study webinars for researchers,
clinicians, and patient-partners. The webinars were completed by 65 clinicians and
researchers and 81 patient-partners. [Table 3] documents greater attendance for the patient-partners and less attrition over the
three webinars when compared with researcher and clinician attendance. The webinar
attendance rates were as follows: (1) researcher and clinician Webinar 1: 64; Webinar
2: 47; and Webinar 3: 35 and (2) patient-partner Webinar 1: 76; Webinar 2: 81; and
Webinar 3: 64. These results seem to support continued support for webinar engagement
among the patient-partners; however, the researchers and clinicians demonstrated an
attrition rate of approximately 45%. Time commitments, other work obligations, and/or
decreased interest may have contributed to lower participation among the researchers
for pre-conference training. However, 55% of the researchers and clinicians completed
all three webinar trainings. Eighty-five per cent of all patient-partners completed
all three webinar trainings. Satisfaction with the webinar trainings was consistent
among both groups. Webinar satisfaction ranged from 3.96 to 4.68 (out of a 1–5 point
scale with 1 for low and 5 for excellent) for the researchers and clinicians and from
3.98 to 4.57 for patient-partners. Webinar participation was highly successful for
patient-partners, while it was modestly successful for researchers and clinicians.
Webinar satisfaction was high for both groups.
Conference Outcomes
Conference ratings were not broken down by participant group (researcher/clinician;
patient-partners) as all participants had joined the resultant 11 research teams.
Very high ratings (>4.0 on the five-point scale) were achieved for 4/8 (50%) of the
questions (i.e., (1) facilitation of research teams; (2) accessible meeting space;
(3) right number of speakers; (4) teams making a contribution to research). Moderately
high ratings (3.0–3.9) were achieved for the remaining ratings ((1) break time; (2)
language was aphasia friendly; and (3) webinar training; communication supports at
the conference). Immediate outcomes suggest that language at the conference was not
as “aphasia-friendly” as desired. Speakers, researchers, and clinicians tended to
speak too fast as continual reminders were noted for all speakers to be mindful of
their rate of speech. Communication issues were also noted by a slightly lower rating
(i.e., 3.94/5.0) on not having enough communication supports for individuals with
aphasia. Future efforts need to address and incorporate enhanced communication for
individuals with aphasia. Overall, all participants seemed generally satisfied with
the conference outcomes.
Follow-up Conference Calls
Suggestions for success were gathered from the research teams and the patient-partner
teams from the conference call follow-up meeting transcripts. The suggestions were
categorized by the authors (see “Methods” section under the “Follow-up Conference
Calls and Communication” subheading) into two broad groupings (i.e., communication
and participation).
Suggestions for patient-partner communication included (1) having short conversations
instead of long conversations; (2) having scheduled conversations; (3) having more
frequent conversations; (4) having conversations that included videos (e.g., Zoom);
and (5) developing a social network page such as Facebook for ease of access to information
at any time. These comments were made so that people with aphasia felt included and
for the research teams to use video clips instead of sending long e-mails.
The participation category included the following suggestions: (1) having small and
short-term deadlines; hence, the use of established deadlines was deemed to be important
with both short- and long-term timelines; (2) for future reference, to invite members
from local aphasia groups for enhanced participation; and (3) to offer some type of
compensation for patient-partner teams (other than monetary). These steps are meant
to increase patient-partners empowerment.[5] Patient-partner empowerment allows for individuals with aphasia and their family
members to take action and achieve what they desire, allows for advocacy, and creates
a voice for those with aphasia.[5]
A possibility to the change in teams communicating more effectively may have been
due to less technical guidance and mentoring was needed during the second meeting.
This was predicted for the first call since all groups were still forming, communicating,
and beginning to organize their research efforts. It was expected that continued communication
would alleviate, and conversations would focus more on research issues.
For the second conference call, discussion focused more on research-specific issues
(30%), while roles and responsibilities (27%) and goals, actions, and timelines (24%)
still dominated group concerns. Comparing the discussion results from the first to
second conference calls, communication techniques and communication issues were less
talked about. One interpretation is that the change was due to the conversation shifting
focus to conversing more about the research projects. It appeared that the teams were
completing their research responsibilities and were functioning as cohesive teams
in accomplishing their tasks and goals. Research-specific issues increased from 14%
of the comments up to 30% of the comments between the two conference calls. Roles
and responsibilities and goals, actions, and timelines remained similar (i.e., high
percentages) to the first and second conference calls.
Appreciative Inquiry
Illustrative examples of AI can be found in the conference participants' language.
For example, one patient-partner stated at the beginning of the conference the following
which illustrates aspects of discovery and dreaming, “Thank you. Those of you that
know us know we wear this on our sleeve (i.e., living with aphasia). The more we know,
the better our lives become. Let's all work together and make this successful. Thank
you!” Another statement of discovery comes from an individual with aphasia, “I had
a stroke five years ago. I could not spell aphasia; I did not know what ‘is’ was.
Everyone knows what cancer, or a stroke is. The population does not know what aphasia
is.” A planning statement is found when the patient-partner stated, “I am a family
member. The difference is in the successes and what seems to work. You talk about
collaboration, exercise, nutrition, and all disciplines coming together to share their
knowledge.” Another example of planning involving education about aphasia was said
when the person with aphasia detailed, “I had a global stroke eighteen months ago.
I want to be a motivational speaker. How do I do that?” During the conference among
the 11 established research teams, 236 pertinent research questions were generated
and narrowed down to 11 specific questions. Hence, it can be stated that design and
action phases were generated.
Managing Challenges
Challenges from this project were many. Although many of the challenges may not have
been achieved, project BRIDGE may have identified key issues for future research teams
to address (i.e., persons with aphasia, patient-partners, clinicians, and researchers).
The time that the patient-partners, clinicians, and also the researchers contributed
to the project conclusions was notable, that is, all parties contributed significantly
time wise to the project outcomes.
It appeared that participants at the BRIDGE conference were committed to advancing
a larger outcome. Perceptions of research and what researchers attempted to accomplish
were an understood project challenge for all conference participants. It seemed that
the patient-partners initially did not have complete conceptions of clinical research.
However, later comments from the patient-partners indicated that this challenge was
recognized and at least attended. For example, one individual with aphasia was excited
about joining the conference calls and participating. One researcher was noted to
have said, “So she's really excited (referring to the person with aphasia). I think
for me one of the most exciting next steps is that she is coming here as a researcher
and not a participant.”
The communication gap (for individuals with aphasia, the clinicians, and researchers)
among all the participants was another challenge that was prevalent from the beginning.
However, near the end of the project, it appeared that this challenge had been recognized
and attempts were being made by the group to address better communication issues.
One researcher stated during the first conference call regarding communication issues,
“I think it's so critical that people with aphasia feel included, I think it might
be very helpful if the team leads occasionally send out really short video clips to
keep us all updated rather than these really long emails.”
In response, one of the individuals with aphasia stated,
“Hey, I want to say that, what C. said is really helpful because I was so overwhelmed
with the text the length of this email, and I had to get help to understand this email
and this is new technology for me after the stroke, and I have a difficult time with
this but if a video would really help me. So, thanks C. for suggesting that.”
From the second conference call, one of the researchers reported on their team how
communication with patient-partners had improved since the first conference call.
She stated that,
And one of the things that I guess we can call it a win for our team has been sort
of in communication within our team members… but one of the suggestions made by several
of our team members was to do a video summary sort of for those meetings especially
because emails are challenging for some of our team members.
In addition, improvement in communication appeared to have improved by the dramatic
decrease in comments related to communication issues on the second conference call
(i.e., from 32 comments down to 17). By directly focusing on the challenge, the conference
participants seemed able to alleviate some of the communication concerns or at minimum
bring forth strategies for future communication issues.
A third challenge was establishing concord as a group. Addressing this challenge was
noted over the conference and was also noticed with the two follow-up meetings via
the conference calls. Some individuals with aphasia served as group spoke-persons
for reporting to the other teams at the conference. In addition, one participant's
husband later mentioned that she definitely wanted to be a part of the research team.
Achieving favorable agreement and concurrence was observed by a researcher on the
second conference call when she very enthusiastically stated, “I'm E. and I'm from
Team Friendship and I'm the researcher from this team and we've made some good progress
since our last check-in.” One could hear the pride in her voice by being able to join
the group and speaking for them as a group. Cooperrider and Whitney's[38]
[46] definition of destiny was defined by completing the group tasks. It is noted that
the teams continued to meet throughout the project timelines and completed all tasks.
Group cohesion appeared to be more evident toward the end of the conference by the
increased focus on the research questions and participation in their team's research
endeavors (i.e., up from 14 to 33 comments). The teams appeared more focused on completion
of the research projects.
It appears that patient-partners of project BRIDGE were able to participate across
Singer et al's[11] highest level of patient involvement, that is, patients as researchers and Turnbull
et al's[5] level 5 designation as co-researchers. Although the project's grant funding ended,
it is anticipated that the established research teams will continue in further research
efforts.
In conclusion, it can be stated that all of the aforementioned challenges still persist.
It is upon all those involved (persons with aphasia, partners, clinicians, and researchers)
to continue to address these challenges. Future projects will need to address these
continued issues.
Conclusion
The aim was to prepare the participants (researchers, clinicians, and patient-partners,
i.e., individuals with aphasia and their family members) for participation as research
team members. At the end of the 2-day conference, 11 research teams were formed. Each
team included at least one researcher, one clinician, and at least one person with
aphasia and/or family member. Each research team generated a completely formed research
question along with several action steps to take in the immediate few months after
the conference. All research teams achieved Turnbull et al's[5] level 5, i.e., patient-partners act as co-researchers. It is hoped that the researchers
and clinicians serve as ongoing consultants to the patient-partners (level 6). Challenges
continued to exist after the conference and follow-up calls; for example, completion
of the research projects by the 11 research teams will continue. Research takes time
with diverse teams such as this effort focusing on patient-partners. One remedy is
that the authors must continue their communication with the teams for completion.
In conclusion, all the research questions that were formed by the teams came initially
from the patient-partners. All clinicians and researchers facilitated the patient-partners
throughout the entire process. Student assistants participated in the conference as
“communication assistants” to those individuals with aphasia who needed help in communicating
their ideas. Additional means of communicating were broached and enacted (e.g., using
short videos instead of long email communications). Hence, this project seems to have
accomplished the overall aims, i.e., to actively involve individuals with aphasia
in the research process as full research team members. Researchers, clinicians, and
individuals with aphasia and their family fully formed research teams.
Including patient-partners into research priorities and planning has been accomplished
across a variety of health domains in the United States, but this was the first organized
national effort, in the United States, to support the inclusion of people with aphasia
and their families as active partners in the research process. Consequently, it is
anticipated that future aphasia researchers also engage patient-partner teams in their
research process for enhanced research practices. This is only the beginning, and
more effort is required. It is hoped that the momentum for patient-partner–based research
continues.
