The validation of aphasia united best practice recommendations with people with aphasia and their caregivers in Vietnam: a nominal group technique study

Figures & data

Table 1. Participant characteristics (n = 28).

Characteristics	People with aphasia (n = 11) n (%)	Caregivers (n = 17) n (%)
Age
<60 years	6 (54.5)	13 (76.5)
≥60 years	5 (45.5)	4 (23.5)
Sex
Male	9 (81.8)	6 (35.3)
Female	2 (18.2)	11 (64.7)
Geographical remoteness
Metropolitan	9 (81.8)	7 (41.1)
Provincial	2 (18.2)	10 (58.8)
Employment status
Working	1 (9.1)	6 (35.3)
Not working	10 (90.9)	11 (64.7)
Education level
Did not attend school	0 (0)	1 (5.9)
Grade 1–5	3 (27.3)	2 (11.8)
Grade 6–9	2 (18.1)	2 (11.8)
Grade 10–12	3 (27.3)	5 (29.4)
College/University	3 (27.3)	7 (41.2)
Aphasia severity
Mild	3 (27.3)	-
Moderate	6 (54.5)	-
Severe	2 (18.1)	-
Time post onset of aphasia
<12 months	6 (54.5)	-
≥12 months	5 (45.5)	-
Main language
Vietnamese	11 (100)	16 (94.1)
Other	0 (0)	1 (5.9) Chinese
Time as caregiver
<1 month	-	3 (17.7)
1–12 months	-	12 (70.6)
>12 months	-	2 (11.8)
Relationship to person with aphasia
Spouse Child*	-	7 (41.2) 4 (23.5)
Parent* Sibling*	-	2 (11.8) 4 (23.5)

*Including in-laws.

Table 2. Relevance and comprehensibility of existing best practice recommendations and suggested changes.

Aphasia United Best Practice Recommendations (Simmons-Mackie et al., 2017)	Agreement ratings				Suggested changes
	Relevant		Comprehensible
	People with aphasia	Caregivers	People with aphasia	Caregivers
(1) All patients with brain damage or progressive brain disease should be screened for communication deficits.	100%	88%	100%	94%	CG. Relevance: Some caregivers worried that screening all patients would waste already finite clinical resources and place unnecessary burden on patients.
(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%	94%	100%	71%	PWA. Specify: “qualified professional” with “speech and language therapist”. CG. Replace “lượng giá” (assessment) with “khám” (examination). CG. Relevance: One caregiver believed extensive evaluation was unnecessary for mild aphasia, because communication impairment might improve on its own as the brain heals.
(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%	88%	100%	100%	CG. Relevance: Some caregivers cautioned against giving the person with aphasia information, so as not to worry them unnecessarily. CG. Relevance: Some caregivers felt the medical doctor would explain this or alternatively, that no explanation was needed as language might improve on its own.
(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%	100%	47%	PWA and CG. Define: using AAC, supports. PWA and CG. Change: “no one” to “all people” and “without” to “have” to make recommendation easier to understand. CG. Relevance: Change wording to include: “depending on the patient’s condition at discharge” because some people with mild aphasia might not need this CG. Relevance: Change wording to include “depending on caregivers’ agreement with the proposed approach” because family members should be involved in and agree on methods for treatment. CG. Relevance: Change to “means of communication should be provided at time of discharge to facilitate care for the patient when they return home”. Remove “or a documented plan … ” to ensure means of communication is provided before discharge, without wasting time at further appointments and to reduce travel time.
(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. (a) 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. (b) Modes of delivery might include individual therapy, group therapy, telerehabilitation and/or computer assisted treatment. (c) Individuals with aphasia due to stable (e.g., stroke) as well as progressive forms of brain damage benefit from intervention. (d) Individuals with aphasia due to stroke and other static forms of brain damage can benefit from intervention in both acute and chronic recovery phases.	100%	94%	100%	94%	PWA. Specify: Change “qualified professional” to “speech and language therapist”. CG. Relevance: Some caregivers felt that intensive treatment is needed only when there is a persistent aphasia or the person is completely unable to communicate. CG. Comprehensibility: The words should be easier to understand and more concise.
(6) Communication partner training should be provided to improve communication of the person with aphasia.	100%	100%	100%	35%	PWA and CG. Define: communication partner. CG. Comprehensibility: Change “đối tác giao tiếp” (Communication partner) to: “đối tượng giao tiếp” (people who communicate with); or “người thân giao tiếp” (communication relatives/family members/caregivers) CG. Comprehensibility: Rewrite in a sentence: “Communication partners need to be trained to improve the communication of the person with aphasia” OR “Training for communication partners is necessary to make communication easier for people with aphasia”
(7) Families or caregivers of people with aphasia should be included in the rehabilitation process. (a) Families and caregivers should receive education and support regarding the causes and consequences of aphasia. (b) Families and caregivers should learn to communicate with the person with aphasia.	100%	100%	100%	94%	CG. Change “bao gồm” (include) to “đưa vào” (*include – same word in English, but different in the Vietnamese translation)
(8) Services for people with aphasia should be culturally appropriate and personally relevant.	100%	100%	100%	88%	CG. Should explain specifically about “services” or change “dịch vụ” (services) to: “dịch vụ phục hồi chức năng” (rehabilitation services) OR “những gì cung cấp” (things provided)
(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%	100%	100%	PWA. Define: health and social care providers.
(10) Information intended for use by people with aphasia should be available in aphasia-friendly/communicatively accessible formats.	100%	100%	100%	71%	PWA. Add: examples of aphasia friendly formats e.g., large font size, pictures, bold keywords. CG. Replace “định dạng” (format) to “hình thức” (*format – same word in English but different in the Vietnamese translation); Replace “thân thiện với mất ngôn ngữ/dễ tiếp cận về mặt giao tiếp” (aphasia-friendly/communicatively accessible) to “dễ hiểu với người mất ngôn ngữ” (easy to understand for people with aphasia)

Key: PWA=People with aphasia; CG=Caregivers.

Table 3. Combined themes across groups in response to the nominal question, “Are there any other recommendations that you think are necessary or need to be added?”.

Themes	Categories	People with Aphasia			Caregivers
		Ranking	Summed priority score	Summed frequency of voting	Ranking	Summed priority score		Summed frequency of voting
(1) Access – People with aphasia should have easy access to speech and language therapy services and information about aphasia	People with aphasia should have access to speech and language therapy services located close to or at their home (at district service level) Both home-based and remote (telehealth) speech and language therapy services should be offered to people with aphasia People with aphasia should receive information about aphasia People with aphasia should have access to resources for communication practice at home The number of speech and language therapists should be sufficient to meet therapy needs of people with aphasia (increased numbers needed)	#1	34	15	#2	35		7
(2) Psychological and Social Support – People with aphasia should receive psychological services and social support	People with aphasia should receive referral to professional psychological services as a routine part of service Professional psychological support should address mental health needs for people with aphasia (e.g., self-esteem and confidence) to improve community reintegration People with aphasia need social support from family	#3	6	5	#1	43		7
(3) Community Awareness and Support – There should be increased community awareness and supports for people with aphasia and their caregivers	Increased community awareness about aphasia is needed to improve community support for people with aphasia and their caregivers Communities should receive education about aphasia	#4	1	1	#5	11		4
Themes identified by people with aphasia group only
(4) Meaningful and Relevant Treatment – People with aphasia should receive treatment based on individual patient needs so that treatment is meaningful and relevant to their home and community life	People with aphasia should receive ongoing assessment of their communication needs People with aphasia should be offered group therapy Treatment for people with aphasia should be meaningful/relevant to a patient’s needs for home and community life, for example: provision of resources to assist communication with children treatment to enable return to work or meaningful activities	#2	25	12	-	-		-
Themes identified by caregivers only
(5) Support for Caregivers – Caregivers should also receive services and training so they can assist the recovery of the person with aphasia	Caregivers should be provided with information and training to support communication and therapy, for example: information about how to create communication aids training in how to practise communication at home with people with aphasia Professional psychological services should also be offered to caregivers to help them understand and address their own mental health needs in order to better support the person with aphasia Group therapy sessions should also be offered to caregivers so they can share their experiences	-	-	-	#3	27		5
(6) Early and Frequent Treatment – People with aphasia should receive speech and language treatment early and frequently	Speech and language therapy should be intiated as soon as possible (at the same time as physiotherapy) Speech and language therapy shuuld be frequent and of appropriate duration – an average of 3 times per week, with a duration of at least 45 minutes/therapy session	-	-	-	#4	15		4

Simmons-Mackie, N., Worrall, L., Murray, L. L., Enderby, P., Rose, M. L., Paek, E. J., & Klippi, A. (2017). The top ten: Best practice recommendations for aphasia. Aphasiology, 31(2), 131–151. https://doi.org/10.1080/02687038.2016.1180662

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