Best Practice in Post-Stroke Aphasia Services According to People with Lived Experience. A Modified Nominal Group Technique Study

Figures & data

Table 1. Participant Characteristics (n=23)

	People with aphasia (n=13)	Significant others (n=10)
Age
< 65 years	7	8
≥ 65 years	6	2
Sex
Male	9	1
Female	4	9
Geographical remoteness area
Major city	8	5
Inner or outer regional	5	5
Employment status
Working	2	4
Not working	5	6
Not working due to aphasia	6	n/a
Education level*
Secondary school	4	6
Bachelor’s degree	6	2
Post-graduate degree	3	1
Indigenous status
Aboriginal and/or Torres Strait Islander	0	0
Neither	13	10
Self-reported aphasia severity
Mild-moderate	9	n/a
Severe	4	n/a
Aphasia Severity (per Aphasia Severity Rating Scale; Goodglass et al., 2001)
Mild (rating of 3 or 4)	6	n/a
Moderate (rating of 2)	4	n/a
Severe (rating of 1)	3	n/a
Time since onset of aphasia
< 12 months	4	n/a
≥ 12 months	9	n/a
Primary language
English	13	10
Seeing speech-language pathologist currently#
Yes	8	n/a
No	4	n/a
Relationship to participant with aphasia
Family	n/a	9
Friend	n/a	1

* missing data for n=1 significant other

#missing data for n=1 person with aphasia

Table 2. Relevance and Comprehensibility of Existing Best Practice Recommendations and Suggested Changes.

Recommendations	Agreement ratings		Suggested changes
	Relevant	Comprehensible
(1) All patients with brain damage or progressive brain disease should be screened for communication deficits.	100%	61%	Define: “screened”. Specify: who conducts screening, areas to be screened, timing of screening.
(2) People with suspected communication deficits should be assessed by a qualified professional. Assessment should extend beyond the use of screening measures to determine the nature, severity, and personal consequences of the suspected communication deficit.	100%	70%	Define: “screening measures”, “suspected communication deficit”. Specify: the qualified professional. Add: assessment should include impacts on family and friends.
(3) People with aphasia should receive information regarding aphasia, etiologies of aphasia (e.g., stroke) and options for treatment. This applies throughout all stages of health care from acute to chronic stages.	100%	70%	Add: other etiologies of aphasia as examples; information should be provided in aphasia friendly format and in multiple modalities. Specify: provide information early.
(4) No one with aphasia should be discharged from services without some means of communicating his or her needs and wishes (e.g., using AAC, supports, trained partners) or a documented plan for how and when this will be achieved.	100%	65%	Define: “AAC”, “discharged from services”.
(5) People with aphasia should be offered intensive and individualised aphasia therapy designed to have a meaningful impact on communication and life. This intervention should be designed and delivered under the supervision of a qualified professional. Intervention might consist of impairment-oriented therapy, compensatory training, conversation therapy, functional/participation-oriented therapy, environmental intervention and/or training in communication supports or AAC. Modes of delivery might include individual therapy, group therapy, telerehabilitation and/or computer assisted treatment. Individuals with aphasia due to stable (e.g., stroke) as well as progressive forms of brain damage benefit from intervention. Individuals with aphasia due to stroke and other static forms of brain damage can benefit from intervention in both acute and chronic recovery phases.	91%	57%	Reduce length Define: “qualified professional”, “stable brain damage”, “meaningful”. Add: reference to self-management options, how long treatment should last, carer training, how people with aphasia should be involved in goal setting.
(6) Communication partner training should be provided to improve communication of the person with aphasia.	100%	87%	Define: “Communication partner training”, “communication partners”. Specify: who delivers the training and when. Add: “to improve communication between the person with aphasia and family members”.
(7) Families or caregivers of people with aphasia should be included in the rehabilitation process. Families and caregivers should receive education and support regarding the causes and consequences of aphasia. Families and caregivers should learn to communicate with the person with aphasia.	100%	87%	Change: “should learn” to “should be taught how to”. Define: “education”. Add: “friends”.
(8) Services for people with aphasia should be culturally appropriate and personally relevant.	97%	74%	Specify: who provides this service. Define: “culturally appropriate”, “personally relevant”. Add: examples of services.
(9) All health and social care providers working with people with aphasia across the continuum of care (i.e., acute care to end-of-life) should be educated about aphasia and trained to support communication in aphasia.	100%	100%	No suggested changes.
(10) Information intended for use by people with aphasia should be available in aphasia-friendly/communicatively accessible formats.	100%	70%	Add: multiple individualised versions are needed. Define: “communicatively accessible”.

Table 3. People with aphasia: Themes across groups in response to the nominal question “Are there any other recommendations that are essential for aphasia services?”

Themes	Categories	Ranked Priority
		All areas	Metropolitan areas	Regional areas
(1) There should be increased awareness about: what aphasia is, the impacts of aphasia, and how to communicate with a person with aphasia.	Awareness about aphasia should be raised. Education about how to communicate with a person with aphasia is needed. Health professionals should use the word “aphasia”.	#1	#6	#1
(2) People with aphasia should receive a coordinated, comprehensive, consistent approach to care.	People with aphasia need multi-disciplinary care. Practice guidelines should be tailored to the stage of recovery. Continuity of care is important. Therapy should be offered in multiple modes. Therapy should include numeracy and activities of daily living requiring use of numbers. Aphasia services should be appropriately resourced.	#2	#2	#3
(3) People with aphasia should receive training, support, and access to technology for communication. Health professionals should be trained to use technology to support communication.	People with aphasia and health professionals should be trained to use technology to support communication. People with aphasia want accessible technology. People with aphasia want financial support and access to technology for communication.	#2	#1	#4
(4) People with aphasia should receive social support. This includes support to maintain existing relationships and opportunities to socialise and make new friends.	Having social support and knowing how to maintain friendships is important. People with aphasia need opportunities for socialisation.	#3	#7	#2
(5) People with aphasia and their families should be offered psychological support. This includes support with depression, grief, loss, and coping, as well as opportunities to build confidence.	Talking about depression and getting help with grief and loss is important for people with aphasia and their families. Help with coping and managing frustrations is important to people with aphasia and their families. People with aphasia need help to build confidence.	#4	#3	#5
(6) People with aphasia should be supported to build the skills needed to self-manage their recovery and re-integrate within their community.	People with aphasia want to learn to self-manage their recovery with periodic ongoing support from speech-language pathologists. Community re-integration is important for building confidence and self-management.	#5	#4	#5
(7) People with aphasia should receive information about their prognosis and factors that influence recovery.	People with aphasia want information about prognosis. People with aphasia want information about factors that influence recovery.	#6	#5	#3

Table 4. Significant Others: Themes across groups in response to the nominal question “Are there any other recommendations that are essential for aphasia services?”

Themes	Categories	Ranked Priority
		All areas	Metropolitan areas	Regional areas
(1) Aphasia services should be person- and family-centred. People with aphasia and their families should be involved in all stages of rehabilitation and have easy access to personalised communication resources.	Families want information provided in acute care. People with aphasia need easy access to personalised communication resources. Aphasia services should be person- and family-centred.	#1	#1	#3
(2) People with aphasia, their carers, and family members should be offered psychological support. They should be provided with information about available services, including counselling.	Carers and family members need to know where to access support. Carers and family members need social and psychological support. People with aphasia need psychological support	#2	#4	#1
(3) People with aphasia, their carers, and family members should be offered social support. They should be provided with information about available services including conversation and peer support groups.	People with aphasia and their family members need peer support. People with aphasia should receive information about the impact of aphasia on relationships. People with aphasia should be connected with conversation and social support opportunities.	#2	#4	#1
(4) People with aphasia and their families should receive a coordinated, comprehensive, consistent approach to care.	A coordinated and comprehensive approach to aphasia care is important. People with aphasia and their families need a clear plan for transitions in care. People with aphasia should have access to an advocate. Continuity of care is important.	#3	#2	#3
(5) People with aphasia and their families need information about their prognosis and recovery. Information about recovery should be informed by assessment at regular timepoints.	People with aphasia and their families need information about their prognosis. People with aphasia should be assessed at regular timepoints and the findings should be provided to them and their families so they can track and understand their recovery.	#4	#3	#4
(6) Awareness of aphasia should be raised in the general public and with people living with aphasia.	Awareness of aphasia and its impacts should be raised amongst the general public and with people living with aphasia.	#4	#5	#2

Figure 1. People with aphasia (n=13): perspectives of participating in research via Zoom.

Figure 2. Significant others (n=10): perspectives of participating in research via Zoom.

Goodglass, H., Kaplan, E., & Barresi, B. (2001). The Assessment of Aphasia and Related Disorders. Lippincott Williams & Wilkins.

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