Aphasiology

ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/paph20

Developing person-centred goal setting resources

with and for people with aphasia: a multi-phase
qualitative study

Amanda Elston, Rebecca Barnden, Deborah Hersh, Erin Godecke, Dominique

A. Cadilhac, Natasha A. Lannin, Ian Kneebone & Nadine E. Andrew

To cite this article: Amanda Elston, Rebecca Barnden, Deborah Hersh, Erin Godecke, Dominique
A. Cadilhac, Natasha A. Lannin, Ian Kneebone & Nadine E. Andrew (2022) Developing person-
centred goal setting resources with and for people with aphasia: a multi-phase qualitative study,
Aphasiology, 36:7, 761-780, DOI: 10.1080/02687038.2021.1907294

To link to this article: https://doi.org/10.1080/02687038.2021.1907294

Published online: 10 Jun 2021.

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APHASIOLOGY
2022, VOL. 36, NO. 7, 761–780
https://doi.org/10.1080/02687038.2021.1907294

ARTICLE

Developing person-centred goal setting resources with and

for people with aphasia: a multi-phase qualitative study
Amanda Elston a,b, Rebecca Barnden a,b, Deborah Hersh c,d, Erin Godecke c,e,f
,
Dominique A. Cadilhac e,f,g, Natasha A. Lannin g,h,i, Ian Kneebone f,j
and Nadine E. Andrew a,b,e
a
Department of Medicine, Peninsula Clinical School, Central Clinical School, Monash University, Frankston,
VIC, Australia; bAllied Health Department, Peninsula Health, Frankston, VIC, Australia; cSchool of Medical and
Health Sciences, Speech Pathology, Edith Cowan University and Sir Charles Gairdner Hospital, Perth,
Australia; dSchool of Allied Health Science and Practice, Adelaide University, Australia; eCentre of Research
Excellence in Stroke Rehabilitation and Brain Recovery, Florey Institute of Neuroscience and Mental Health,
Melbourne, VIC, Australia; fCentre of Research Excellence in Aphasia Rehabilitation and Recovery, La Trobe
University, Melbourne, VIC, Australia; gDepartment of Neuroscience, Central Clinical School, Monash
University, Melbourne, VIC, Australia; hAlfred Health (Allied Health), Melbourne, VIC, Australia; iSchool of
Allied Health (Occupational Therapy), La Trobe University, Melbourne, VIC Australia; jDiscipline of Clinical
Psychology, Graduate School of Health, University of Technology Sydney, Ultimo, NSW, Australia

ABSTRACT ARTICLE HISTORY

Introduction: Stroke patients with aphasia are often excluded from Received 6 May 2020
person-centred goal setting as part of their clinical care, despite a Accepted 16 March 2021
recommendation for person-centred goal setting in national clinical KEYWORDS
guidelines. aphasia; stroke; goal setting;
Aim: To develop and field test an aphasia supplement to a person- person-centred;
centred goal setting package for stroke to better meet the needs of interdisciplinary
patients with aphasia.
Methods: A multi-phase, qualitative study design was employed
building on prior work in a non-aphasia stroke population. Initial
materials, including clinician training, were developed into an apha­
sia goal setting supplement with input from an expert working
group. In phase one, feedback was sought from consumers with
aphasia (n=5) on the layout and format of the patient-facing com­
ponents. In phase two, six clinicians from one Australian healthcare
network (occupational therapy: n=2, physiotherapy: n=1 and
speech pathology: n=3) were observed using the goal setting pack­
age with eight inpatients with aphasia (2 mild, 3 moderate, 3
severe). In phase three, post field testing feedback was sought
from clinicians (n=5) and patients with aphasia (n=3). Content
analysis of interview data was carried out.
Results: The consumer feedback session in phase one indicated
that the supplement layout was helpful for including people with
aphasia to participate actively in person-centred goal setting.
Adaptations were made for the aphasia supplement including lan­
guage, graphic, and format changes based on the feedback. During
the field testing in phase two, 18 person-centred goals were set
with eight patients with aphasia (median two goals) and included:

CONTACT Nadine E. Andrew nadine.andrew@monash.edu Department of Medicine, Peninsula Clinical School,

Central Clinical School, Monash University, Peninsula Health, PO Box 52 Frankston, Victoria 3199, Australia
© 2021 Informa UK Limited, trading as Taylor & Francis Group
762 A. ELSTON ET AL.

secondary prevention (8%), functional recovery (31%), community

participation (28%), everyday activities (28%), and environment
(6%). Based on observations by members of the research team
during field testing, clinicians across the multidisciplinary team
were able to facilitate goal setting effectively. In phase three, clin­
icians and patients reported the supplement was useful to facilitate
person-centred goal setting for people with aphasia.Conclusion:
The aphasia supplement for the goal setting package was appro­
priate in meeting the needs of patients with aphasia after stroke
and encouraged person-centred goal setting across multiple recov­
ery areas.
Conclusion: The aphasia supplement for the goal setting package
was appropriate in meeting the needs of patients with aphasia after
stroke and encouraged person-centred goal setting across multiple
recovery areas..

Introduction
Aphasia is an acquired language disorder that can occur as a consequence of stroke
(Fridriksson et al., 2018). Aphasia varies between people and can affect an individual’s
understanding and/or expression of written and/or verbal communication. Approximately
25–40% of survivors of stroke have aphasia, the majority of whom also suffer a range of
other disabilities such as dysphagia, vision loss, cognitive impairment, and/or hemiparesis
or hemiplegia (Code & Petheram, 2011; Deloitte Access Economics, 2017; Flowers et al.,
2013; O’Halloran et al., 2009). Given the heterogeneity in presentations, people with aphasia
(PWA) have a range of recovery goals (Berg et al., 2017; Worrall et al., 2011). Many of these
goals are indirectly related to communication such as those related to secondary preven­
tion of stroke, physical recovery, community access, and participation.
Person-centred goal setting is recognised as an effective method of improving patient
outcomes and is recommended in international clinical guidelines (Bovend’Eerdt et al.,
2009; Heart and Stroke Foundation, 2019; Royal College of Physicians, 2016; Stroke
Foundation, 2019). There is an acknowledged need for person-centred approaches in
stroke recovery to ensure that rehabilitation and recovery assistance aligns with the needs
and wants of PWA (Brown et al., 2012; Hersh, Sherratt et al., 2012; Wallace et al., 2017). In
person-centred approaches, the clinician explains and supports the process of goal
setting but the patient has full ownership over the identification of goals that are
important to them, and how they will be framed. When using a person-centred goal-
setting approach, strategies to achieve patient stated goals are discussed collaboratively
between the patient, family, and clinician. However, this often does not occur within
stroke rehabilitation (Lloyd et al., 2018). Furthermore, evidence suggests that PWA are
frequently excluded from the goal setting process altogether (Hersh, Worrall, et al., 2012a;
Plant et al., 2016; Scobbie et al., 2013).
When PWA are involved in goal setting, it is often therapist controlled or led
(Conneeley, 2004; Leach et al., 2010; Plant & Tyson, 2018). Therapist controlled goal
setting involves a process with limited collaboration between clinicians, patients and
family members; is impairment focused and has little consideration of pre-morbid func­
tioning (Leach et al., 2010). Therapist led goal setting risks the clinician imposing goals on
 APHASIOLOGY 763

the patient. These latter approaches to goal setting are likely to disempower patients by
not considering their individual circumstances or aspirations.
Goal setting collaboratively with PWA has been recognised as one of four priority areas
for implementation in poststroke aphasia management (Shrubsole et al., 2018). The
process of person-centred goal setting requires meaningful input from the patient; there­
fore, additional clinician time and resources are often required in order for PWA to
participate fully. A current barrier to implementation is the lack of appropriate resources
which facilitate a truly person-centred approach to goal setting (Shrubsole et al., 2019).
PWA are likely to have goals across all aspects of functioning and, as such, all members of
the interdisciplinary team should have access to resources and training to support goal
setting with this group. Clinicians’ communication skills are central to assisting in the
development of person-centred goals (Cameron et al., 2018). Using alternative means of
communication such as gesture, drawing, writing, use of augmentative and alternative
communication devices, aphasia-friendly materials, communication aids, and images; can
support successful communication with PWA (Stroke Foundation, 2019). Aphasia-friendly
formatting incorporates design guidelines to provide information which is more acces­
sible to those with language impairment (Rose et al., 2011; T. Rose et al., 2003). The use of
aphasia-friendly formatting has been shown to increase consumer health information
knowledge in PWA by approximately 30% (Worrall et al., 2005). However, to the research
team’s knowledge there are no standardised and structured approaches available to
support PWA to set comprehensive person-centred goals.
The work described in this paper builds on a prior pilot project involving a menu-based
approach to person-centred goal setting designed to underpin an intervention using
personalised electronic health messages to support recovery after stroke (iVerVe,
ACTRN12618001519246) (Cadilhac et al., 2018). The final package described below is
currently being used to support the iVerVe messaging intervention in a fully powered
multicentre trial to support transition to home following stroke (Cadilhac et al., 2020,
2018) (ReCAPS ACTRN12618001468213). The menu-based approach to goal setting was
operationalised into a comprehensive standardised goal setting in stroke package (hen­
ceforth referred to as the base package). The base package was developed with input
from a national expert working group that included senior academics and clinicians with
expertise in goal setting, as well as consumers and consisted of:

(1) Resource A: an updated version of the iVerVe goal setting in stroke menu consisting
of 34 sub-categories under five broad categories aligned with the International
Classification of Functioning (ICF) categories of: health/body function, activities and
participation, and environment (Andrew et al., 2016) with the addition of
a secondary prevention category given the relevance after stroke to reduce stroke
risk. Following working group and consumer feedback these were renamed to:
your health, mind and body, everyday activities, out and about, and healthcare and
support.
(2) Resource B: a clinician manual with a section linked to each of the 34 menu items
containing: guideline summaries; common goal examples; goal metrics based on
the Specific Measurable Attainable Relevant Time-related (SMART) Goal Evaluation
Method (Bowman et al., 2015); evidence-based strategies to work towards goal
764 A. ELSTON ET AL.

attainment; and worked examples of how to convert a patient-stated goal into

a well-defined goal.
(3) Resource C: clinician goal recording templates based on Goal Attainment Scale
(Hurn et al., 2006) methodology to measure progress towards goal attainment.
(4) Resource D: a consumer goal summary sheet on which the patient’s five chosen
goals and accompanying information were listed on a single A4 page. Information
included the patient-stated goal, the patient’s goal reworded into a well-defined
goal, strategies to achieve the goal, the timeframe for when the goal should be
achieved, and the level of importance as rated by the patient.
(5) Resource E: clinician goal setting in stroke training package. A three-hour training
session which introduced clinicians to the components of the base package and
included: education on person-centred care; goal setting, including current evi­
dence and clinical guideline recommendations; an explanation of the base package
resources and videos and role play exercises with worked examples.

Despite the utility of the base package in a general stroke population, it was noted by the
developers that it did not meet the needs of PWA. Therefore, the aim of this study was to
develop and field test an “aphasia supplement” to extend the utility of the base package
for use with PWA.

Methods
A multi-phased study design using qualitative methods in the form of semi-structured
interviews, focus groups and observations, was conducted. The study comprised three
phases:

(1) Development: the development of the aphasia resources including consumer

feedback
(2) Observations: observations of clinicians using the resources
(3) End user feedback: clinician focus group post field-testing and interviews with PWA

Feedback was sought before and during each stage and adaptations made to meet the
needs of PWA and clinical staff. This study was reviewed and approved by the Peninsula
Health Human Research Ethics Committee (LRR/17/PH/8).
All phases of this study were conducted at Peninsula Health. Peninsula Health is
a public healthcare network servicing the people of the Mornington Peninsula in
Victoria, Australia. It consists of two acute hospitals, three inpatient subacute units, and
a range of community health facilities. During the study, patients were recruited from
community health and an inpatient subacute unit. Clinicians were recruited from two
subacute units. One subacute unit was a stroke-specific rehabilitation unit while the other
was a split general rehabilitation/geriatric evaluation and management ward.
Rehabilitation care in Australia is care with the intention to improve the functioning of
a patient (Australian Institue of Health and Welfare, 2020). Rehabilitation units are often
physically separate to acute hospitals and within Australia 10% of rehabilitation units are
stroke-specific wards (Stroke Foundation, 2018). The majority of stroke patients in reha­
bilitation units receive care from doctors, nurses, physiotherapists, occupational
 APHASIOLOGY 765

Table 1. Application of design recommendations for Resource 1 (Menu).

Numbers and Language Numbers written as figures
43 item menu with single concepts
Menu Flesch-Kincaid grade level 1.2
Font style and size Arial
Size ranged from 14 to 22, with the larger sizing being used for headings
Size 100 used for yes/no board
Layout A3 version
A4 Flip style version
A4 Portrait version
1.5 line spacing
Blank spacing around text sections
Single goal per patient summary sheet
Graphics 38 photographs and 5 graphics over the 43 menu items
All graphics labelled
All images were sourced through commercially free to use channels
(most through https://www.pexels.com/royalty-free-images/)

therapists, speech pathologists, dietitians, social workers, and allied health assistants.
Some Australian rehabilitation units have access to neuropsychologists (50%) and diver­
sional therapists (12%) (Stroke Foundation, 2018). The median length of stay for stroke
survivors in Australian rehabilitation wards is 22 days (Stroke Foundation, 2018).

Phase 1: development
A working group consisting of 15 academics and clinicians with expertise in goal setting,
process evaluation, health service research, aphasia research and implementation science
was set up to determine how the aspects of the base package could be adapted to meet
the needs of PWA. All authors of this paper, except AE, were members of the expert
working group. The team agreed the resources which would benefit from being modified
were Resource A: the menu, Resource B: the manual, Resource D: the patient summary
sheet, and Resource E: the training package. These resources were selected for modifica­
tion as they all had a direct impact on how clinicians set goals with PWA. They were either
patient-facing and required aphasia-friendly formatting (e.g., the menu) or they were used
to improve clinician skills in working with PWA (e.g., the training package).
Literature on goal setting with PWA was reviewed by AE, including how goal setting
sessions were conducted, the resources used to support goal setting, the level of involve­
ment from PWA and the goal review processes (Rose et al., 2011; Rosewilliam et al., 2011;
Worrall et al., 2011). This literature review provided the foundation for informing the
design of the goal setting sessions, development of resources, strategies to support
research involvement of PWA and the goal review processes including outcome mea­
sures. Guiding principles for developing aphasia-friendly materials (Rose et al., 2011, 2012)
were used as the framework for developing the first iteration of resources reviewed by
PWA in their feedback session: Resource A (the menu) and Resource D (the patient
summary sheet) of the aphasia supplement (Table 1). The guidelines for best practice
printed education materials include design recommendations for numbers, language,
layout (font size, font type, line spacing and white space), and graphics. It is recom­
mended that information for PWA be no higher than grade six level (Eames et al., 2003;
Worrall et al., 2006) and for the general population to be no higher than grade eight
766 A. ELSTON ET AL.

Figure 1. Resource D patient summary sheet.

(South Australian Health, 2013). The readability level for all printed resources (Resource A,
B and D) was measured using the Flesch-Kincaid readability formula. The Flesch-Kincaid
readability formula is a commonly used tool which calculates the grade level expected of
the reader in order to comprehend the written information (Jindal & MacDermid, 2017).
Resource A (the menu); the base package 34 sub-item menu was translated into a 43
sub-item aphasia-friendly menu under the same five categories: your health, mind and
body, everyday activities, out and about, and healthcare and support. This involved
separating items that contained multiple concepts into single concepts. For example,
“attending to one’s hygiene, dressing, and eating” which was one item on the base menu
was reworked into four items: shower, toilet, dressing, and eating. Graphics were used for
abstract concepts where a photograph was too broad to support comprehension; for
example, “Health information” the graphic was of the standard information symbol. All
images were sourced through commercially free to use channels via https://www.pexels.
com/royalty-free-images. The base menu’s overarching five categories were redesigned
into a contents page for the aphasia menu. Three pictorial versions of Resource A (menu)
all using the same 43 items were developed to alter the document length: an A3 version
(two menu pages), a flip style version with six items to a page (one title page, eight menu
pages), and a portrait version with nine items to a page (one title page, six menu pages).
Resource B (the manual) was developed as a supplement to the manual in the base
package. The aphasia manual supplement provided aphasia specific information on: types
of communication impairment, specific ways to support different communication impair­
ment, general communication strategies, an example script on introducing the abstract
concept of goal setting, and tips on troubleshooting common difficulties. The aphasia
manual supplement was designed to be used alongside the base manual when complet­
ing goal setting with PWA. The aphasia manual supplement also included information on
how the clinician can integrate the Shared, Monitored, Accessible, Relevant, Transparent,
Evolving and Relationship-centred (SMARTER) method to support person-centred goal
setting for people with aphasia (Hersh, Worrall et al., 2012).
Resource D (patient summary sheet): although the base package patient summary
sheet was designed for consumers, it was heavily reliant on reading comprehension
 APHASIOLOGY 767

and visually distracting for people with receptive aphasia. An aphasia-friendly version
of Resource D was developed to include one goal to a page. The patient stated goal
was highlighted to preserve the patient’s wording. The patient summary sheet
continued to have all the information that the previous version included. Two
versions of the patient summary sheet were created, a “dot point” and a “circle”
style (Figure 1).
Following development of initial drafts of the aphasia-friendly resources by the work­
ing group, feedback was sought on the patient-facing aspects from PWA. Outpatients at
Peninsula Health who attend a social aphasia group were invited to attend a consumer
feedback session. All consumers (n = 7) were informed of the date scheduled for the
consumer feedback session, informed of the purpose of the session and that attendance
was voluntary. Consent was implied by face-to-face attendance at the scheduled con­
sumer feedback session. Four males and one female with an age range of 48 to 76 years
old participated in the one-hour consumer feedback session. One consumer spoke English
as a second language; English was the first language for all other consumers. Participants’
receptive aphasia severity ranged from mild to moderately severe and expressive aphasia
from mild to severe. The level of aphasia severity was informally assessed by the treating
speech pathologist, the speech pathologists who attended the consumer feedback ses­
sion, and the project coordinator (AE), individually, with 100% agreement. Time since
stroke onset ranged from one to six years.
The consumer feedback session was conducted for one hour with the first and
last 20 minutes spent in group discussion and the remainder of time spent indivi­
dually with support from a facilitator. The focus group methodology outlined by
Breen (2006) was followed. The combination of group and individual break-away
feedback was chosen to support the generation of ideas and provide a safe space
for PWA to share and compare experiences. Each consumer was supported to
participate by one-to-one contact with a healthcare professional or hospital volun­
teer. Group time was semi-structured; the consumers provided feedback on their
previous goal setting experience/s as well as on the layout, structure and potential
usefulness of the aphasia-friendly goal setting resources that had been developed.
Individual break-away time was also semi-structured with all facilitators supporting
the PWA to go through Resource A (the menu; three different versions) and
Resource D (the patient summary sheet; two different versions). Handwritten
notes were taken by researchers, treating clinicians and the hospital volunteer.
These notes were collated by the project coordinator (AE) and entered into NVivo
(QSR International, 2020) for analysis.

Table 2. Characteristics of clinicians participating in the focus group.

Goal setting experience with
Occupation Clinician role Years working in allied health communication impaired patients
Speech Pathologist Senior >5 Yes
Speech Pathologist Junior <5 Yes
Occupational Therapist Senior <5 Yes
Occupational Therapist Senior >5 Yes
Physiotherapist Senior >5 Yes
768 A. ELSTON ET AL.

Phase 2: observations
Following incorporation of consumers’ feedback into the aphasia supplement, the apha­
sia-friendly goal setting resources were field tested in the two Peninsula Health inpatient
rehabilitation units. Clinical staff working in either of the two rehabilitation wards who
were regularly involved in providing discharge care planning for patients with stroke were
recruited by the project coordinator (AE) via email invitation. Fourteen staff across seven
professions (occupational therapy, speech pathology, physiotherapy, dietetics, social
work, nursing, and medical) were invited and seven clinicians provided written informed
consent prior to participation in this study. Participating clinicians held junior and senior
roles in occupational therapy, speech pathology, and physiotherapy. Senior clinicians
were defined as those who provided supervision as part of their role.
All seven clinician participants had previously attended base package training and
were familiar with goal setting clinically. For the aphasia supplement training (Resource E)
the education session was updated to include reasons for including PWA in goal setting,
communication support strategies and an explanation of the updated resources
(Resource A, B, and D) and how to use them. Role play exercises were updated to include
communication goals. Post-training, each clinician was provided with a hard copy and
digital copy of resources A-D and had access to the project coordinator (AE) for clinical
support.
Following training, clinicians were asked to use the aphasia goal setting package as
part of their routine clinical practice with PWA. Members of the research team (AE & RB)
performed observations of the clinical goal setting process when used with PWA. Detailed
notes were taken using a purposefully developed observation recording template with 25
predefined categories (Supplemental Table 1). Some categories were specific to the
resources being used while others were more general such as the duration of the goal-
setting session. Four clinicians were observed once and two clinicians were observed on
two occasions each making a total of eight observations. One clinician attended training,
however, transferred off the stroke ward and did not participate in any of the observed
goal setting sessions.

Phase 3: end user feedback

After completion of the observation period participating staff were invited to attend
a focus group to discuss their experience with using the goal setting package and to
provide feedback on how the package could be improved and integrated into practice.
Five of the seven clinicians participated in the focus group (Table 2). Two clinicians did not
participate in the focus group because they had left Peninsula Health. The focus group
was led by AE with notes taken by RB and NA. Questions were developed with reference
to the Theoretical Domains Framework (TDF) (Cane et al., 2012). This provided
a comprehensive guide to help identify design issues and perceived enablers and barriers
that would assist with future implementation of the package in healthcare settings (Atkins
et al., 2017; Cane et al., 2012; Francis et al., 2012).
Patients of clinicians who had been observed (N = 8) were invited to participate in one-
on-one interviews with the project coordinator (AE). Three of the eight observed patients
participated in the interviews (Table 3). Of the patients not interviewed: two were re-
Table 3. Characteristics of patients with aphasia who participated in goal setting.
Expressive Receptive Apraxia of Cognitive- Vision Hearing Primary
Gender Age Aphasia Aphasia Dysarthria Dysphonia speech communication Aids Aids language Consented to interview
Male 82 Mild-mod Mild-mod Mild - Mild - Yes Yes English Yes
Male 90 Mild-mod Mod - - Mod-severe - Yes - English Readmitted to acute
Male 58 - Mild - Mod - Mod Yes - English Readmitted to acute
Male 87 Mild-mod Mild-mod Mild-mod - Mild Severe Yes - English Lost to follow up
Female 76 Mild - Mild - - Mild-mod Yes Yes English Yes
Female 76 Severe Mod-severe - - Severe - Yes - English Lost to follow up
Female 68 Severe Mod - - Mild-mod - Yes - English Discharged out of
catchment
Female 45 Severe Mild-mod - - Severe - - - English Yes
APHASIOLOGY
769
770 A. ELSTON ET AL.

admitted to an acute inpatient hospital, one was discharged out of catchment, and two
were lost to follow-up post-discharge. Of the patients interviewed two were female and
one was male with aphasia severity ranging from mild to severe. During the interview
they provided feedback on their experience of using the package and any suggestions for
refinement. The patient consent form was written in aphasia-friendly language and was
explained to the patient by the project coordinator (AE) face-to-face using multiple
communication modalities. Capacity to consent was assessed by asking the PWA six
yes/no questions about the study.

Data analysis
Descriptive statistics were used to describe characteristics of clinician and patient parti­
cipants. Data were obtained from all observations and focus groups and were subjected
to inductive and summative content analysis (Hsieh & Shannon, 2005). Detailed notes
were recorded in hard copy for the consumer feedback, observations, clinician focus
group, and interviews with PWA. The clinician focus group and interviews with PWA
were audio recorded. These were then coded in NVivo by AE and RB to identify major
themes and subthemes. NVivo is a computer analysis software package used for qualita­
tive and mixed-methods research which is used to manage non-numerical or unstruc­
tured data and support the examination of relationships in the data (QSR International,
2020). All content analysis coding was independently performed by two researchers (AE &
RB) and where there was discrepancy a third researcher (NA) was consulted.

Results
Phase 1: development
Approximately half of the consumers did not know what a goal was, despite all having
goals previously set in hospital. None felt their previous goal setting experience in
hospital was person-centred, saying it was either therapist controlled or therapist led.
Consumers were mixed in their response to how much control they would have liked
when setting goals in hospital. One consumer said “goals given for me and I was able to
work with it and it certainly helped me“ (PWA1). Another consumer said “options choose . . .
yes, no . . . speaking is really hard . . . had other goals” (PWA2).
During the consumer feedback session most (3 of 5) consumers found the abstract
concepts of Resource A (the menu) difficult to understand. A lot of pictures were taken
literally instead of the intended broad topic. For example, one of the menu items is titled
“other activities.” It was intended as an activities-based item that is not covered by the
other everyday activity options. The original menu has “other activities e.g., writing,
reading a book, music, craft.” To simplify the item within the aphasia supplement it was
titled „other activities“ with a picture of knitting. One consumer said “I don’t knit” (PWA4),
and another consumer said “Knitting? Want other options bowling, darts, dancing, then
knitting” (PWA5). Some consumers had suggestions for how to improve this item picture;
all giving options of what they would choose and different from the next person.
Consultation within the research team resulted in the tool having an empty space,
allowing the item to be individualised.
 APHASIOLOGY 771

The consumers identified which items from Resource A they wanted changed through
language changes, graphic changes, or both. Eighteen of the 43 menu items were
changed after the consumer feedback session (Supplemental Table 2). Some feedback
was specific; for example, for the “support group” item which was a picture of two hands
holding, a consumer said “should people sitting” and gestured around the room (PWA5);
indicating that the graphic should show people sitting together as they were in the
feedback session. Other feedback indicated they did not like the item, leaving possible
changes up to the research team. For example, for the item “mood”, which was a picture of
a man visibly upset, a consumer said “not the best” (PWA3) implying the graphic should be
happier to indicate what you’re aiming for. The elements not mentioned in the feedback
session were presumed to be workable for goal setting purposes.
The consumers all agreed that the language in Resource A was appropriate. One said
“not much writing, good” (PWA5). The contents page of the menu displaying the five main
categories was unclear to all of the consumers. They were not sure if the categories were
additional goal choices or headings. Due to this confusion the contents page was
removed from Resource A. Three of the five consumers liked the A3 version (Appendix
A) “convenient all in front of you” (PWA2); however, one consumer said it was “too much”
(PWA5). Two of the five consumers liked the landscape flip style version (Appendix B). Four
of the five consumers indicated a strong preference against the portrait style. Following
this feedback, the portrait style was removed.
All consumers used Resource A to set their own priority goals, and all felt the menu was
helpful. Most said they would have liked it during their hospital admission and one
consumer said he would like to have it available to him now as an outpatient. Most said
Resource A was a good memory prompt: “good to help not forget” (PWA5). One consumer
felt the resource would be helpful beyond the stroke population “not a stroke . . . but . . .
can still use this?” (PWA1)

Phase 2: observations
The A3 version of Resource A (the menu) and Resource B (the manual) were used in five of
the eight observations. The goal setting session took on average 38 minutes (range
20–55 minutes) to set an average of two goals (range 0–4). An interim review of
Resource A and D was performed after the first two observations. It was noted that
patients with aphasia required support to prioritise their goals and clinicians were having
difficulty assisting the patient in converting their patient stated goal into a SMART goal. To
address these limitations a metrics page was created as an addition to Resource A (the
menu) to guide discussion on what goal attainment looked like for the patient. The
metrics are based on the SMART Goal Evaluation Method which is a standardised measure
of clinical usefulness of developed goals (Bowman et al., 2015). A level of importance page
was also created as an additional page to Resource A (the menu) to support the prioritisa­
tion of goals. The level of importance page is designed around the Australian traffic light
system of green: top priority goal, orange: medium priority goal, and red: low priority goal.
These additions were introduced into field testing for all subsequent sessions.
A total of 88 goals were selected for level of importance rating and 22 items were
then selected to be developed further into a SMART goal (Figure 2). In cases where
similar goals were selected (e.g., exercise and moving) they were merged into one
772 A. ELSTON ET AL.

Goal items selected and set

0 1 2 3 4 5 6 7 8 9

Blood pressure
Diabetes
Healthy eating
Exercise
Medication
Cholestrol
Drink less alcohol
Change weight
Quit smoking
Moving
Falls
Bladder and bowels
Pain
Tired
Mood
Memory
Swallowing
Communication
Seeing
Shower
Toilet
Dressing
Eating
Gardening
Technology
Cooking
Housework
Washing
Money
Reading
Other activities
Public transport
Driving
Work
Leisure
Relationships
Healthcare decisions
Health information
Preventing stroke
Life after stroke
Support groups
Health professionals
Home help

Selected for level of importance rating Selected for primary goal

Figure 2. Proportion of goals selected (N = 88) and set (N = 22) in each menu item NB: Goals set
includes merged subitems creating one goal.
SMART goal to minimise duplication and to streamline the process. This resulted in
a total of 18 goals being set during the eight observations across the five menu
categories (Figure 3). One goal setting session was terminated with no goals set despite
using the aphasia supplement. The clinician attempted many communication repairs
 APHASIOLOGY 773

Goal area
35%

30%

25%

20%

15%

10%

5%

0%

Your Health Mind and Body Everyday Activities Out and About Healthcare and Support

Figure 3. Proportion of goals set in each broad menu category, N = 18.

during the session including swapping from the A3 to the flip style of Resource A (the
menu), covering options to limit visual distractions, asking yes/no questions, and re-
explaining the purpose and process of goal setting. Ten priority areas were selected;
however, the clinician was unable to support the PWA to establish a goal for any area.
The clinician felt that this session was unsuccessful due to the person’s lack of insight
and distractibility in the session.

Phase 3: end user feedback

Clinician focus group
In the clinician focus group most clinicians reported they preferred Resource A (the menu)
in the A3 style over the flip style saying that it was easier to explain that the patient should
pick five options from all those available. Clinicians acknowledged that goal setting is an
abstract concept which is difficult to understand for patients with communication and/or
cognitive impairment. A patient introduction page (Appendix C) was suggested to assist
in explaining the concept of goal setting to patients: “to support that conversation with
someone with communication impairment” (C1). The new menu pages were acknowledged
to be useful to the clinicians. “I found [the metrics page] helpful to guide me to make sure all
aspects were included in the goal” (C1).
All clinicians reported benefiting from Resource B (the manual) either “to fill out the
documentation in the right way” (C2) or “working out what sort of parameters you might
need to include in that particular goal” (C1). The trouble shooting section and the example
script in Resource B (the manual) was mentioned as being “really helpful if we were having
any difficulties with [PWA], we can quickly open the manual and you know where to go for
a good strategy” (C3). The clinicians requested that the aphasia supplement be embedded
into the base package manual.
774 A. ELSTON ET AL.

The additional resources were useful in supporting goal setting with patients with
aphasia. Resources identified by the clinicians as most useful were the level of importance
page (Resource A: menu), metric page (Resource A: menu), summary page (Resource D),
and using a whiteboard during sessions. It was unanimously agreed by the clinicians to
only use the dot point summary page; “the bullet points seem to be a lot more ordered and
simple” (C2).
To improve Resource E (training package), all clinicians suggested inclusion of a goal-
setting video session between a clinician and a patient with aphasia in the goal setting
training. Therefore, a session between a researcher (AE) and a patient with aphasia was
recorded as a training resource. This 26-minute resource includes: the patient choosing
items from the menu; the patient prioritising his top six goals; a collaborative discussion
to convert the patient stated goal into a SMART goal; documentation of the SMART goal;
strategies on how to work towards goal attainment; and the timeframe for the goals.
Most clinicians discussed the importance of making goals visual to the patient and to
the team; and providing a quality handover: “goal setting . . . it’s only wasted if we don’t
hand it over to the next team to work towards that goal” (C2). It was stated that individual
comprehensive care plans should be guided by the goals that the patients identify. All
clinicians said the aphasia resource was useful in supporting goal setting with patients
with aphasia, and additionally reported finding it useful with cognitively impaired
patients: “Some of my patients were quite cognitively impaired, which did impact on how
[the aphasia package] was used but certainly thought it was more effective than not using
that version” (C3). Another said: “The aphasia supplement allowed the inclusion of patients
who otherwise would have been excluded from goal setting” (C2). A barrier identified was
the time required for training and goal setting: “Complex patients, aphasic patients, they
just take more time and work” (C2). Despite these barriers, the clinicians acknowledged
they would like to have the package implemented as part of usual practice.

Interviews with PWA

Three patient interviews were conducted (see Table 1 and 3). In the one-on-one inter­
views with PWA there was an even split between liking the two menu versions; the flip
style and the A3 format (Resource A). One patient used the A3 format in the goal setting
session, as chosen by the clinician, however when shown the flip style format said she
would have preferred that one “because . . . it’s not so cluttered” (P5) and it would support
her reading comprehension deficit more “I can’t read for very much . . . long” (P5). However,
even though P5 would have preferred the flip style, she wanted both options available to
other patients, acknowledging that some patients would prefer the A3 style; “but to have
[the A3] as well would be beneficial . . . which type you are . . . some people” (P5). The images
were appropriate for the intended items they were representing and were seen as
supportive for the patients’ communication impairment: “the images are a major focusing”
(P1). All were able to understand the pictures and words. The resources within the
package were all discussed during the patient interviews.
During the interviews with PWA no suggestions for improvement were identified for
any of the images, words, or more broadly the resources. “Without [the menu] you’ve got
no discussion point” (P1) and “that was good I really yeah great” (P8). In the interviews with
PWA, Resource D (summary sheet, see Figure 1) was recognised as a useful memory
 APHASIOLOGY 775

prompt; “I don’t remember all the details . . . so without the summary copies then it becomes
a discussion now and an hour later some other time it disappears” (P1). The patients
reported the level of importance page was helpful; “this part great” (P5).
No-one from the patient interviews felt their goal setting session was therapist con­
trolled. One patient said the session was person-centred “I was in charge” (P5), while the
other two felt it was therapist led “ha half and half” (P8), “bi it’s a bit of both” (P1). However,
when asked if they would have preferred more control they stated “no no, that was
enough, that was good” (P8). One patient discussed the timing of the goal setting during
her hospital admission. She said “the goal . . . episode um seemed to me to be too soon” (P5),
“I still was still coug . . . too confused about . . . um . . . having the stroke” (P5). When asked if
she would have preferred to select the time to complete goal setting, she said “I don’t
know because really . . . um they’re here now and they are set and um it’s wonderful” (P5).
One patient mentioned the importance of revising goals allowing for an opportunity to
update them as required; “the ah goal setting will of course change over time” (P1). All PWA
felt the rehabilitation team were working on supporting their individual goal attainment.
One patient identified limited clinician time as an issue “not not to ta enough time” (P8)
and “they don’t even turn up half the time” (P8). All patients found the goal setting session
helpful; “very much . . . very much oh I very . . . I I ah yes” (P8) and had positive impressions of
the goal setting session; “I’m glad I’ve done it because it made me focus” (P5).

Discussion
A multi-phased qualitative approach was used to develop new resources for use along­
side a recently developed goal setting package for stroke to facilitate person-centred goal
setting with patients who have aphasia. When used in conjunction with the previously
developed goal setting package, patients with aphasia were able to set their own goals
across a range of areas. Importantly, when using the package, clinicians from different
allied health backgrounds were able to facilitate patients with aphasia to set goals across
multiple domains. This addresses the recommendations of Stevens et al. (2013) that goal-
setting resources should be usable by all members of the interdisciplinary team. Having
this interdisciplinary perspective meant that a broad range of goals were set across all
domains of the ICF with only two of the 18 goals set being communication based. The
package allowed for the inclusion of patients who, without the aphasia supplement,
would likely have been excluded from person-centred goal setting.
The new aphasia supplement enhanced the patients’ perceived level of involvement in
person-centred goal setting. The consumers who participated in the feedback session
prior to the development of the aphasia supplement reported that their goal setting
experience as an inpatient was therapist controlled or therapist led. None felt it was
person-centred. Patients who participated in goal setting using the aphasia supplement
package felt their goal setting experience was person-centred or therapist led. None felt
that it was therapist controlled. Berg et al. (2016) concluded that there is a need for
greater emphasis on how to involve people with severe aphasia in goal setting. Three of
the eight observations in this study included patients with severe aphasia (expressive +/ –
receptive). All three were able to complete goal setting collaboratively with the clinician
as observed by the researchers. Consistent with findings from other researchers, the
presence of cognitive impairments, in particular lack of insight, limited the ability for
776 A. ELSTON ET AL.

one of the participants in the current study to complete the goal setting session (Leach
et al., 2010). Additional resources or techniques may be required to better support
patients with cognitive deficits to set goals.
A main identified barrier to goal setting with patients with aphasia in the literature was
the additional time required to set goals (Hersh, Worrall et al., 2012). Participants in the
clinician focus group similarly identified additional time as a key barrier to implementa­
tion of person-centred goal setting in this population. In field testing of the base package
goal setting sessions with stroke patients without aphasia took between 30–60 minutes to
set an average of four goals (range 3–5). The results from the current study showed that
the time taken to complete the whole goal setting session including completing the
summary sheet was the same but with fewer goals set [average of two goals (range 0–4)].
Despite fewer goals being set it could be argued that one or two person-centred SMART
goals are more useful than a greater number of therapist controlled goals and more
empowering for the patient (Hersh, Sherratt et al., 2012).
Strengths of the current study were that a multi-phased development approach was
used whereby feedback from clinicians and consumers was incorporated throughout the
process. The aphasia supplement provided a much-needed resource to further enhance
person-centred care following stroke with positive feedback from consumers. As clinician
participants already had experience with the general stroke package, the aphasia supple­
ment was easily integrated into goal setting practice by clinicians rather than if they had
needed to learn a completely separate approach. This has potential to lead to better
integration and uptake of the goal setting process.
Limitations include that the study was conducted at only two sites within a single
health network using a small convenience sample. This may have impacted on the ability
to generalise the results more broadly. However, the overall feedback was consistent
between participant groups. To address the acknowledged limitation of the sampling
bias, this goal setting package is currently being tested in a large randomised controlled
trial and further feedback will be obtained as part of the trial’s process evaluation
(ACTRN12618001468213). Another limitation is that the package is only available in
English and was developed only with survivors of stroke. Further work is required to
determine the applicability of the resource beyond patients with stroke and other
language groups in a larger multisite study.
The aphasia supplement developed in this study supported patients with aphasia
to set their own, personally meaningful goals. Research to date has not universally
included people with aphasia in goal setting trials, and therefore use of our aphasia
supplement should now enable broader research questions to be answered, such as
whether the ability to set broader functional and participation-based goals translates
to changed therapy approaches and improved outcomes for patients with aphasia.
This aphasia supplement also has the potential to allow patients with aphasia to
become active participants in their care decisions. For this potential to be realised,
however, active implementation of the supplement into clinical goal setting pro­
cesses is now required.
 APHASIOLOGY 777

Acknowledgments
We thank Renee Stolwyk and Kelsie Herrmann for their assistance in the pre-study working group.
We also acknowledge Peninsula Health for supporting the field testing component of the study.

Disclosure statement
The authors declare that there is no conflict of interest.

Funding
This study was supported by a National Health and Medical Research Council (NHMRC) clinical
stipend from the Centre for Research Excellence Stroke Rehabilitation and Recovery.The following
authors received research fellowship support from the NHMRC: DAC (1154273) and NEA (1072053).
The following authors received fellowship support from the National Heart Foundation of Australia:
NAL (102055); National Health and Medical Research Council [1072053 (NEA), 1154273 (DAC),
Clinical stipend from the Centre for Research Excellence 1077898];.

ORCID
Amanda Elston http://orcid.org/0000-0003-3319-5839
Rebecca Barnden http://orcid.org/0000-0002-7076-4853
Deborah Hersh http://orcid.org/0000-0003-2466-0225
Erin Godecke http://orcid.org/0000-0002-7210-1295
Dominique A. Cadilhac http://orcid.org/0000-0001-8162-682X
Natasha A. Lannin http://orcid.org/0000-0002-2066-8345
Ian Kneebone http://orcid.org/0000-0003-3324-7264
Nadine E. Andrew http://orcid.org/0000-0002-4846-2840

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