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

ABSTRACT

Background

Speech and language therapy is a relatively new profession in Vietnam and to date, 79 individuals have graduated from Master and Bachelor programs. For the few therapists working with adult populations, clinical guidance tailored to the Vietnamese context is limited. The Aphasia United Best Practice Recommendations were developed to provide multi-national guidance for the management of post-stroke aphasia and have been translated into 29 languages, including Vietnamese. To date however, their applicability to low-middle income countries with emerging speech and language services such as Vietnam has not been explored.

Aims

To determine the relevance, comprehensibility, and comprehensiveness of the Aphasia United Best Practice Recommendations to people with aphasia and caregivers in Vietnam.

Methods and Procedures

People with aphasia and their caregivers participated in focus groups, utilising the nominal group technique. Participants were recruited from four hospitals in Ho Chi Minh City. Participants with aphasia were sampled for severity of aphasia, age, sex, time-post onset, geographic location, employment status, and relationship. Participants reviewed the recommendations, rated relevance and comprehensibility (clarity), and made suggestions for improvement. Participants assessed the comprehensiveness of the recommendations and additional items were generated and prioritised. Data were analysed using descriptive statistics and qualitative content analysis.

Outcomes and Results

People with aphasia (n = 11) and caregivers (n = 17) participated in one of nine focus groups. People with aphasia rated all recommendations as relevant. Levels of agreement varied for caregivers and fell < 85% for one recommendation only (Recommendation 4 – relating to the need for all people with aphasia to have some means of communication prior to discharge). Both participant groups suggested changes to content and wording to reflect the context and culture of Vietnam. Three common themes within the newly proposed recommendations were identified across both participants with aphasia and caregiver groups: (1) easier access to speech and language therapy services and information about aphasia, (2) the need for psychological and social support for people with aphasia and (3) the need for increased community awareness and supports for people with aphasia and their caregivers.

Conclusions and Implications

The Aphasia United Best Practice Recommendations were perceived to be relevant, however new recommendations reflecting the unique cultural, economic and healthcare environment of Vietnam were identified. Recommendations relating to access to services and community-based rehabilitation were prioritised, supporting the need for continued growth and advocacy for the speech and language therapy profession in Vietnam.

KEYWORDS:

• Stroke
• aphasia
• people with aphasia
• caregivers
• best practice recommendations

Introduction

There is a growing body of literature describing substantial disparities in incidence and outcomes of stroke between low-middle income nations and countries with higher socioeconomic status. Low-middle income nations have a high burden of stroke, globally accounting for approximately 52% of prevalent strokes, 71% of stroke-related deaths and 78% of disability-adjusted-life-years lost (Feigin et al., 2014). In contrast, higher-income nations have lower reported incidence and severity of stroke and better functional outcomes (Avan et al., 2019). In Vietnam, a lower-middle income nation (World Bank, 2024), stroke is the leading cause of death and disability (Carr et al., 2018). It is estimated that there are over 150,000 new cases of stroke annually (Yamanashi et al., 2016), with approximately 1.5 million people living with the consequences of stroke in their daily life (Le et al., 2016). Those people who survive a stroke, often experience severe sequelae including aphasia. Given that incidence of aphasia post-stroke is estimated at 20–38% (De Cock et al., 2020; Dickey et al., 2010; Engelter et al., 2006; Flowers et al., 2013; Kyrozis et al., 2009; Pedersen et al., 2004; Stipancic et al., 2019), 30,000 to 57,000 individuals in Vietnam will experience aphasia each year.

In Vietnam, speech and language therapy is a relatively newly emerging profession. While other allied health professions such as physiotherapy and social work have been practiced widely and are well known in Vietnam (Hayashi, 2010; Oanh, 2002), until recently, speech and language therapy has not been recognised as a distinct profession. Historically, limited speech and language therapy services have instead been provided by medical doctors, nurses, physiotherapists and other professionals within their own daily practice (McAllister et al., 2010). Atherton et al. (2020) describe the growth of speech and language therapy services in the Vietnamese healthcare system as “adhoc” in nature, developing primarily as a result of international speech and language therapists visiting as part of surgical teams (e.g., for cleft palate) or non-government/religious organisations providing aid. Over time, in order to develop more sustainable service delivery, visiting speech and language therapists began to train local professionals with knowledge and skills in speech and language therapy, leading to the current environment, in which services are provided by a myriad of professionals, with limited training and supervision specific to speech and language therapy (Atherton et al., 2020).

With international support, the first Vietnamese certified training in speech and language therapy commenced in 2010, and in 2012, 18 individuals graduated from a two-year course at the Pham Ngoc Thach University of Medicine at Ho Chi Minh City (McAllister et al., 2013). These 18 graduates became Vietnam’s first speech and language therapists with formal training across the full scope of speech and language therapy practice. The Ministry of Health of Vietnam (2014) recognised speech and language therapy as a profession through the “National Plan of Rehabilitation Development for the period 2014–2020”, setting a target of 100% of rehabilitation departments with training content related to professional titles, including speech and language therapy. However, growth in numbers of speech and language therapists has been slow. A US AID report to assess the status of current speech and language therapy training and services in Vietnam in 2016 estimated that were less than 100 speech and language therapists who had received broad-based training with extensive clinical supervision from certified speech and language therapists (Eitel et al., 2017). Of these 100, the large majority worked in hospitals or medical facilities in major cities. Of note, in both health and education environments, the majority of speech and language therapy services focused on children and there were limited services for adults following stroke or head injury (Eitel et al., 2017). Currently, there is one university offering a Master’s degree in speech and language therapy (University of Medicine and Pharmacy at Ho Chi Minh City commenced 2019), and 3 universities offering formal training through Bachelor degrees for speech and language therapy (University of Medicine and Pharmacy at Ho Chi Minh City commenced 2022, Da Nang University of Medical Technology and Pharmacy commenced 2018, and Haiduong Medical Technical University commenced 2021). At time of publication a total of 79 individuals had graduated across Masters and Bachelor university programs in Vietnam. Thus while numbers of speech and language therapists continue to grow, there remains very limited personnel in the field of speech and language therapy for adults with communication and cognitive disorders of neurological origin in Vietnam.

A key challenge for health professionals, such as speech and language therapists working in stroke rehabilitation in low-middle income nations is identifying how evidence-based interventions can be translated into practice in local, low-resourced settings (Gururaj et al., 2022). Best practice or clinical practice guidelines provide a clear framework for evidence-based decision making and have been shown to improve patient outcomes and enhance service quality while optimising efficient use of available resources (Grimshaw & Russell, 1993; Hubbard et al., 2012). In their study comparing priorities of over 600 healthcare professionals for implementing research evidence within stroke rehabilitation across high, upper-middle and lower-middle income nations, Gururaj et al. (2022) identified implementation of clinical practice guidelines as the highest rated priority for lower-middle income nations. They recommended the urgent necessity for the development of clinical practice guidelines in stroke rehabilitation specific to low-middle income countries, and taking into account the cultural, economic and geographical constraints within lower-resourced services. Because development of national or local guidelines can be a lengthy, resource-heavy process, they suggested research contextualising existing guidelines might be more feasible to assist low-middle income nations to improve services and adhere to best practice (Gururaj et al., 2022). Similarly, Bernhardt et al. (2020) have issued a call to action to adapt and contextualise best practice or clinical guidelines based on local needs for low-resource settings to improve implementation of evidence-based interventions.

In June 2020, the Vietnamese Ministry of Health issued a guideline on speech and language therapy for stroke patients, which provided some guidance relevant to the management of aphasia (Vietnam Ministry of Health, 2020). The guidelines covered the role of speech and language therapists, interdisciplinary coordination, assessment processes, goal setting, intervention and discharge for patients after stroke. As such, they represent an important document for informing and growing evidence-based practice of aphasia management in Vietnam. However, systematic reviews on the quality of guidelines relating to management of aphasia within stroke rehabilitation have highlighted the need for aphasia specific guidelines, finding that many stroke guidelines lack detailed and rigourously designed recommendations specific to aphasia services (Rohde et al., 2013; Shrubsole et al., 2016). To address this need, in 2017, Aphasia United, an international body dedicated to supporting the provision of high-quality aphasia services, developed a set of best practice recommendations for aphasia management, intended to be evidenced based, trustworthy, internationally applicable and user-friendly (Simmons-Mackie et al., 2017) (see Supplementary File 1). Initially, ten best practice recommendations were developed by an expert panel based on the review and thematic synthesis of published research evidence, national clinical guidelines and evidence websites. Recommendations were then further refined and agreed on using a multi-national consensus process with a group of 500 professional aphasia experts worldwide (Simmons-Mackie et al., 2017). The recommendations have been translated into more than 20 languages around the world, including Vietnamese (see Supplementary File 1). The content of these recommendations addresses aspects related to aphasia management such as screening and assessment of communication deficits, intensive and individualised aphasia therapy, use of communication aids, and conversation partner training (Simmons-Mackie et al., 2017). Until recently the best practice recommendations lacked input from people with lived experience of aphasia. They were recently validated with 13 individuals with aphasia and 10 caregivers in Australia (Wallace et al., 2017). However, given potential cultural and economic differences between Australian and Vietnam populations, including the differences in stroke and aphasia care outlined above (limitations in resources and infrastructure and the relatively recent introduction of speech and language therapy as a profession), it is not known if the recommendations are appropriate and useful to people with aphasia and their families/caregivers in the Vietnamese context. Therefore, we conducted this study to determine if the existing Aphasia United Best Practice Recommendations were considered to be relevant, comprehensible (i.e., clear/able to be understood), and comprehensive (i.e., not missing essential recommendations) by people with aphasia and their caregivers in Vietnam, a low-middle income country with emerging speech and language therapy and aphasia services.

Methods and procedures

Study design

Focus groups were conducted between December 2020 and April 2021, using a modified nominal group technique. The nominal group technique uses a structured process to guide group interaction to generate and rank ideas, with the aim of gaining group consensus (Delbecq et al., 1975; Harvey & Holmes, 2012). This technique has been successfully used with people with aphasia and their significant others (Wallace et al., 2017, 2023). As per our previous research using the same methodology (Wallace et al., 2017; data collection period June 2020 to July 2021), we modified the nominal group technique process to include assessment of the current Aphasia United Best Practice Recommendations and to generate and rank new best practice recommendations. Ethical approval was obtained from the University of Medicine and Pharmacy at Ho Chi Min City ethics committee (approval numbers: 626/HĐĐĐ-DHYD and 700/HĐĐĐ-DHYD).

Participants

Eligibility criteria

Participants were people with aphasia from stroke and their caregivers. The inclusion criteria for people with aphasia were: (a) over 18 years of age; (b) diagnosed with post-stroke aphasia; and (c) able to participate in a focus group (with communication support) as determined by the lead investigators. Caregivers were defined as anyone aged over 18 years who regularly communicated with or assisted the person with aphasia. This included spouses and other family members (e.g., brother, daughter), or friends and personal care attendants (paid carers). Caregivers were nominated by the participants with aphasia and there were no other eligibility criteria for inclusion. Exclusion criteria for both participant groups were people with self-reported cognitive, sensory, neurological, and/or mental health impairments (e.g., dementia, decreased vision, hearing loss, Parkinson’s disease, severe depression, etc.) which would prevent participation in a group discussion.

Sampling and recruitment

Participants with aphasia were purposively sampled for: age (<65 years; ≥ 65 years), sex (male; female), geographical remoteness (major city; provinces), employment status (working; not working); level of education (grade 1–5; grade 6–9; grade 10–12; college/university); aphasia severity (mild-moderate; severe), time since onset of aphasia (<12 months; ≥12 months) and language (Vietnamese; other). Caregivers were sampled for variation in age (<65 years; ≥ 65 years), sex (male; female), geographical remoteness (major city; regional); employment status (working; not working); level of education (grade 1–5; grade 6–9; grade 10–12; college/university; time as caregiver (<12 months; ≥12 months) and language (Vietnamese; other). Participants were recruited through four hospitals in Ho Chi Minh City: Cho Ray Hospital, An Binh Hospital, Orthopaedic and Rehabilitation Hospital – Ho Chi Minh City, and HCMC Hospital for Rehabilitation – Professional diseases.

Procedures

Data were collected by the first authors DHT and PDNT, who at the time, were in their final year of post-graduate degrees in speech and language therapy in Vietnam. DHT is a physiotherapist with 3 years of experience working in stroke and rehabilitation services. PDNT is a medical doctor with 16 years of experience working in stroke and rehabilitation services. Authors DHT and PDNT received regular supervision and support from senior author SJW via videoconferencing with the assistance of a translator.

Data collection

Procedures were consistent with our previous study conducted in Australia (Wallace et al., 2017) as outlined below. All research activities and materials were presented in the Vietnamese language. Information about the study was provided both verbally and in writing and written materials for participants with aphasia were designed using aphasia-friendly principles (e.g., including pictorial supports) (Rose et al., 2012). Consent was obtained only after participants were provided with a clear explanation of the study and the advantages and disadvantages of participation. Aphasia severity was rated by the first and second authors using the Aphasia Severity Rating Scale (Simmons-Mackie et al., 2018).

Separate focus groups were held for people with aphasia and caregivers. All focus groups were conducted in person. This research was conducted during the COVID-19 pandemic and data collection was suspended for periods of time as required, to adhere with COVID-19 restrictions. Each group was limited to 5 participants to allow sufficient time and resources to support participation. For individuals with aphasia, participation in groups was supported through use of multi-modal communication (e.g., gesture, drawing, writing) to help participants understand and convey ideas; use of yes/no and multiple-choice questions, provision of extra response time; and verification of participant responses in real-time by group facilitators (Dalemans et al., 2009).

Within each group the same modified nominal group technique was used:

1. The 10 best practice recommendations were presented one at a time. Participants with aphasia viewed the “aphasia friendly” version of the recommendations and caregivers viewed the standard version (see Supplementary File 1). Participants took turns answering two questions: “Do you agree with the recommendation?” (relevance); “Is the wording clear?” (comprehensibility).

2. The nominal question was then presented to the group: “Are there any other recommendations that you think are necessary or need to be added?” (comprehensiveness). Participants offered one response at a time until no new responses were generated. The responses were recorded by the group facilitator, on large sheets of paper.

3. Each participant individually ranked their top three new recommendations from the list.

Data analysis

The relevance and comprehensibility of the existing recommendations were determined quantitatively by percentage agreement. Qualitative data in response to the two questions asked to participants about relevance and comprehensibility included comments about the existing recommendations and suggested amendments or changes to wording recorded as facilitator fieldnotes. Verbatim quotes were transcribed in response to the nominal question to generate new suggested recommendations (comprehensiveness). The relative importance of prioritised new recommendations was determined quantitatively, by assigning a point value to participants’ rankings (i.e., #1, #2 and #3 were assigned three, two and one points, respectively). These points were summed in real time within groups to produce a prioritised list. Following the focus groups, the prioritised list of recommendations from each group were analysed using qualitative content analysis (Graneheim & Lundman, 2004) enabling comparison across groups. Content analysis was performed by the first and second author with input from all co-authors. Similar recommendations were grouped into categories and further organised into larger themes. Based on the method outlined by McMillan et al. (2014), a secondary analysis, involving calculation of the sum of scores and ranked priority, was conducted.

Results

A total of 28 people (11 people with aphasia and 17 caregivers) participated in one of nine focus groups (Group 1: 5 participants with aphasia, Groups 2&3: 3 participants with aphasia, Group 4: 4 caregivers, Groups 5–7: 3 caregivers, Groups 8&9: 2 caregivers). Participants with aphasia were 7 males and 2 females, and caregivers included 7 spouses, and 10 other family members (parents, children or siblings of the person with aphasia). Variation was achieved for all sampling variables except language of participants with aphasia. No potential participants were excluded based on exclusion criteria. One person declined to participate because of unavailability for focus groups. Participant demographics are presented in Table 1. This study pre-dated the DESCRIBE standards for reporting of participants in aphasia studies (Wallace, Isaacs, et al., 2023) and therefore not all recommended characteristics are reported.

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.

Relevance and comprehensibility of the best practice recommendations

There was 100% agreement amongst participants with aphasia that the Aphasia United Best Practice Recommendations were relevant and comprehensible (clear). Minor suggestions were made to change wording to increase clarity, e.g., changing “qualified professional” to “speech and language therapist”, defining “AAC” and “supports”, and providing examples of “aphasia friendly formatting”. There was greater variability in caregiver ratings. For 9 of the 10 best practice recommendations caregivers had greater than 85% agreement ratings on the relevancy of the recommendation, but for Recommendation 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, there was only an agreement rating of 65%. Caregivers expressed their view that this recommendation might not be relevant for individuals with only a mild aphasia, who might not need continued services/support for communication and therefore shouldn’t waste clinical resources. Caregivers also described their belief that if they needed it, individuals should all receive means of communication at time of discharge. They reported that they were not satisfied with a “documented plan” to be included as an alternative, because this was seen as wasting time and resources on travel and attendance at additional appointments after discharge.

For comprehensibility (clarity), caregiver agreement ratings were less than 85% for 4 of the 10 best practice recommendations (Recommendations 2, 4, 6 and 10). Recommendation 4 (as above) and 6: communication partner training should be provided to improve communication of the person with aphasia both had agreement ratings of less than 50%, with scores of 47% and 35% respectively. For Recommendation 4, caregivers were unfamiliar with the terms “AAC” and wanted “supports” to be defined more clearly. They also suggested rewording the recommendation so that instead of reading, “No one with aphasia should be discharged from services without … ” it reads “All people with aphasia should be discharged from services with … ” With respect to Recommendation 6, caregivers were not familiar with the term or concept of “communication partner training” and wanted the wording of this recommendation to be clearer and specify more simply “people who communicate with” or to use easier to understand descriptions such as “relatives, family members or caregivers” instead of “communication partner” (See Table 2).

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.

Comprehensiveness

Participants responded to the question, “Are there any other recommendations that you think are necessary or need to be added?” Using qualitative content analysis recommendations were organised into six themes – three themes were identified by both participants with aphasia and caregivers, one theme identified only by participants with aphasia and two themes identified only by caregivers (See Table 3).

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

Themes identified by both participants with aphasia and caregivers

The most highly ranked theme across groups related to easier access to speech and language therapy services and information about aphasia (ranked #1 by people with aphasia and #2 by caregivers). Specifically, both people with aphasia and caregivers identified the need for speech and language therapy services to be provided at locations closer to or at their homes, at a district hospital level or through home-based therapy. Caregivers described the need for increased numbers of speech and language therapists to meet therapy needs. As an alternative to home-based therapy, people with aphasia suggested therapy could be offered remotely (i.e., through telehealth). Participants with aphasia also described wanting information about their aphasia, to learn about the causes, symptoms and self-help methods and to access resources to help support communication and therapy practice at home, emphasising the need for resources in the Vietnamese language.

The second highest ranked theme (#3 for people with aphasia and #1 for caregivers) was a recommendation for psychological and social support for people with aphasia with both stakeholder groups recommending professional psychological services should be offered as a routine part of service. People with aphasia reported they did not want to be cared for by outsiders, preferring social support and care from family members, but also acknowledged professional psychological services are needed to address stress and depression after illness and onset of aphasia. Caregivers described the need for people with aphasia to receive professional psychological support to help overcome grief and low self-esteem, with a focus on helping them reintegrate into the community sooner.

Third, both groups identified a need for increased community awareness and supports for people with aphasia and their caregivers and suggested community members should receive education about aphasia (ranked #4 for people with aphasia and #5 for caregivers).

Themes identified by participants with aphasia group only

Of importance to people with aphasia (ranked #2) was meaningful and relevant treatment. Specifically, this referred to receiving treatment based on individual patient needs, with ongoing assessment over time, so that treatment was meaningful and relevant to their home and community life. Examples included communicating with children and treatment focused on returning to work or recreational activities. Group therapy was also advocated.

Themes identified by caregiver group only

A priority for caregivers (ranked #3) was the recommendation that caregivers should also receive services and training so they can assist the recovery of the person with aphasia. This included the need for information and training in supporting communication (e.g., how to create communication aids and practice home therapy), and the need for professional psychological services and group therapy for caregivers themselves.

Finally, early and frequent speech and language therapy was ranked fourth as a priority for caregivers, with the recommendation for therapy to be initiated as soon as possible and conducted an average of 3 times/week, in sessions of at least 45 minutes in duration. Caregivers compared speech and language therapy services to physiotherapy services and expressed their desire that speech and language therapy should be initiated at the same time as physiotherapy, and have more therapy hours.

Discussion

Aphasia United’s Best Practice Recommendations were explored in focus groups using a modified nominal group technique to determine the relevance, comprehensibility, and comprehensiveness of the recommendations for people with aphasia and caregivers in Vietnam. Participants with aphasia had 100% agreement with the existing recommendations in terms of relevancy and comprehensibility. For the caregiver group, ratings of over 85% relevancy were found for all recommendations except Recommendation 4, which caregivers perceived might not be relevant for individuals with mild aphasia. Comprehensibility ratings within the caregiver group were below 50% for Recommendations 4 and 6, with ratings for the other recommendations varying between 71–100%. Of note, caregiver comments about the comprehensibility of Recommendations 4 and 6 highlighted their unfamiliarity with terms such as “AAC”, “communication supports”, and “communication partner training”. Despite this, when answering the nominal question, caregivers clearly expressed their desire for communication partner training, specifically requesting improved information and training to support communication at home within the caregiver theme “Support for Caregivers”. There is, therefore, a clear implication for the need to improve wording of these recommendations in the Vietnamese translation to increase understanding and address this mismatch. Participants in both groups also provided additional new recommendations, discussed below in relation to the Vietnamese context.

Easier access to speech and language therapy services and information about Aphasia

The high prioritisation of easier access to services located closer to or at their homes across both stakeholder groups was not surprising, given that speech and language therapy is a relatively newly emerging profession in Vietnam. According to United Nations statistics, the population of Vietnam as of June 2021 was more than 98 million people. As outlined in the Introduction to this paper, the first university qualified speech and language therapists graduated in Vietnam in 2012 and currently there are still less than 100 graduates of Bachelor and Masters of Speech and Language Therapy university programs in Vietnam, with the majority of therapists specialising in paediatric speech and language therapy. At time of publication a total of 79 individuals had graduated across Masters and Bachelor university programs in Vietnam, which equates to an average of one speech and language therapist for every 1.2 million people. While numbers of therapists continue to grow, this gives some indication of the very limited personnel in the field of speech and language therapy for adults with communication and cognitive disorders of neurological origin in Vietnam. In contrast, in 2023/24 in the US, UK, Australia, there were an average of one speech and language therapist for 1788 – 3876 people (Health and Care Professions Council, 2024; Speech Pathology Australia, 2024; US Bureau of Labor Statistics, 2023). Stroke care more broadly, has been recognized as a priority in Vietnam and in 2016, the Ministry of Health issued a statement guiding the establishment of stroke units, stroke departments, and stroke centres, which resulted in 81 hospitals initiating introduction of stroke treatment facilities, including 6 comprehensive stroke centres (Mai et al., 2022). However, these stroke services (including speech and language therapy services) remain concentrated in major cities (Mai et al., 2022) and thus it is not surprising participants in this study have highlighted the need for greater district hospital level services, and the introduction of home-based therapy services. Threats to community-based rehabilitation in Vietnam include financial constraints, human resource limitations, lack of infrastructure, and changing political environments within the community (Mijnarends et al., 2011). Speech and language therapists in Vietnam also report lack of recognition for the profession, lack of culturally appropriate resources, and a lack of experience in developing policy and advocating for the profession as barriers to growing speech and language services more specifically (Atherton et al., 2020). Recognition of the lack of qualified professionals in the field of speech and language therapy, particularly speech and language therapists working with people with aphasia was reflected in this study by caregivers explicitly calling for increased numbers of speech and language therapists, and both stakeholder groups advocating for greater access to services located closer to their homes.

Participants with aphasia within this study suggested remote, i.e., telehealth services as one potential solution to address access issues. In our Australian study, people with aphasia similarly prioritized a new addition to the best practice recommendations regarding increased training, support and access to technology for communication (Wallace, Anemaat, et al., 2023). There is a growing body of research supporting use of telehealth for individuals with aphasia. A systematic review and meta-analysis in 2021 found comparable effectiveness of telerehabilitation for people with aphasia when compared to conventional face-to-face treatment across a number of language outcomes, although they cautioned that study numbers and quality of evidence remain low, with further research needed (Cacciante et al., 2021). Other studies have identified broader potential benefits of telehealth such as the ability to provide therapy asynchronously and enhanced self-management of therapy (e.g., Braley et al., 2021; Nichol, Wallace, et al., 2022). Barriers to digital access for people with aphasia potentially make telehealth more challenging for this population (Kelly et al., 2016), although Øra et al., 2020 suggest that technical faults are more common than user errors when individuals with aphasia receive appropriate support and training in using systems. Nichol, Pitt, et al. (2022) report that clinicians themselves are often not confident training and supporting people with aphasia to access technology. Furthermore, low-middle income nations likely face greater difficulties in the adoption of telehealth than high income nations. A systematic review on the challenges to emergence of telehealth in the Philippines (Leochico et al., 2020) identified 51 human, organizational and technical challenges for developing nations. The most commonly reported challenge related to low-internet speed and connection in low and middle-income countries, while the highest reported category of challenges was organizational, including lack of funding, infrastructure, policies/governance and institutional support. In the context of life following a COVID-19 pandemic, the low numbers of speech and language therapists in Vietnam, and the potential benefits of telerehabilitation for addressing the gap in supply and demand of services, further research investigating the feasibility and application of remote speech and language therapy intervention in Vietnam for people with aphasia would be highly valuable to improve access to services, especially for patients in regional areas.

In addition to increased access to services, participants with aphasia have prioritised the need for easier access to information and resources about aphasia. A greater need for information was likewise identified by people with aphasia in the Australian study (Wallace, Anemaat, et al., 2023), with emphasis on the desire for prognostic information and a need to know what “recovery” would look like. However, while participants with aphasia in Vietnam also desired better understanding of the causes, symptoms, and effects of aphasia, their main priority was on access to resources in their own language (for example, handouts, aphasia websites or introductory videos). Speech and language therapists in Vietnam have also identified a lack of appropriate resources in the Vietnamese language as a barrier to practice (Atherton et al., 2020). In contrast to the Australian study, people with aphasia in this study also placed greater emphasis on resources for therapy exercises and activities they could self-manage at home, related to the challenges regarding lack of access to therapy already discussed. A desire for greater autonomy in directing their own therapy has been reported previously by people with aphasia (Worrall et al., 2011). Again, telehealth services or applications might be one avenue for enabling greater self-management and access to therapy resources for people with aphasia (e.g., Braley et al., 2021; Nichol, Wallace, et al., 2022).

Finally, the caregiver theme of “Early and Frequent Speech and Language Therapy” and some elements of the theme “Support for Caregivers” were also likely related to issues of difficulties accessing therapy closer to home once discharged from hospital. Within “Early and Frequent Speech and Language Therapy” caregivers compared speech and language therapy services to physiotherapy services received in hospital, and expressed their desire for speech and language therapy to commence earlier, i.e., at the same time as physiotherapy, and for people with aphasia to receive more frequent speech and language therapy while in hospital, recognising that therapy options were limited once they had returned home. Within the theme of “Support for Caregivers” a key issue discussed was the need for caregivers to receive information about how to create communication aids and training in how to practise communication at home with the person with aphasia, again because they had not been able to easily access services and receive further speech and language therapy support once discharged.

Psychological and social support

Another new recommendation prioritised by both stakeholder groups was the need for individuals with aphasia to receive professional psychological support as a routine part of treatment. Within the theme of support for caregivers it was also suggested that psychological services should likewise be offered to caregivers, to help them understand and address their own mental health needs in order to better support the person with aphasia. A similar emphasis on the need for greater psychological and social support was found in the Australian study (Wallace, Anemaat, et al., 2023) and is also consistent with other recent studies in which people with aphasia have expressed their desire for and preferences regarding the types of psychological support they need for depression (Baker et al., 2020; Iwasaki et al., 2023). The call for greater psychological support is unsurprising given that individuals with aphasia are at high risk of experiencing depression and other psychosocial difficulties post-stroke (e.g., Hilari & Northcott, 2006, 2017; Zanella et al., 2023). People with aphasia after stroke are 50% more likely to experience depression compared to people without aphasia following stroke (Mitchell et al., 2017). Depression in stroke survivors negatively impacts quality of life and rehabilitation outcomes and is associated with higher rates of mortality (Bartoli et al., 2013; Kwok et al., 2006). Caregivers can also experience ongoing depression and burden of care, resulting in third-party disability over time (Grawburg et al., 2019; Kruithof et al., 2016).

There is a growing body of research supporting a multitude of approaches to identifying and treating psychological problems for people with aphasia. Examples include rehabilitation therapies for depression and anxiety (Baker et al., 2018; Ryan et al., 2022); counselling (Sekhon et al., 2022); solution focused therapy (Northcott et al., 2021); and relaxation therapy (El-Helou et al., 2023). However, translation of evidence and best practice recommendations into care remains suboptimal. For example, Australian Stroke Audits suggest that in 2018 regardless of age, almost 2 in 3 stroke survivors with mood impairment did not have access to psychological services (Purvis et al., 2021), with minimal improvement by the 2020 audit, with access still less than 50% (Stroke Foundation, 2020). Barriers identified by health professionals in Australia to implementing psychological care include lack of specialised knowledge and training and lack of resources and access to psychologists, with health professionals emphasising the need for leadership and support at a managerial level to drive changes and provide funding for specialised resources and staff (Baker et al., 2021). Within the Vietnamese context of an overburdened stroke care system in a low-middle income nation, and the emerging practice of speech and language therapy, these challenges may be further exacerbated. In their study exploring the practices of speech and language therapists in South Africa providing pyschosocial care to people with aphasia, Nash et al. (2022) identified a lack of training/feeling under skilled and high patient caseloads/lack of time as the most common barriers for speech and language therapists to address psychosocial issues, with long waiting lists and lack of aphasia knowledge in mental health professionals seen as barriers to referring people with aphasia to professional psychological services. Given the negative impacts of aphasia on psychosocial wellbeing and the links between depression and rehabilitation outcomes and mortality, further research is warranted on how psychological needs of people with aphasia post-stroke are currently being managed in Vietnam and to identify and address barriers to 1) effective translation of evidence to practice and 2) access to psychological services for people with aphasia and caregivers.

Increased community awareness and support

Participants with aphasia and caregivers also made recommendations for increasing public awareness of aphasia and community support. This parallels findings from the Australian study in which both people with aphasia and family member stakeholder groups identified increased awareness as an important new Best Practice Recommendation (Wallace, Anemaat, et al., 2023). It is also congruent with previous international research findings that show increased awareness is a desired outcome for people with aphasia and their families (Wallace et al., 2017) and reflects low levels of community awareness and knowledge reported internationally compared to other comparable neurological conditions such as Parkinson’s Disease (Code, 2020). Hence, participants’ recommendations on raising community awareness of aphasia should be noted for any future amendments/updates of the Best Practice Recommendations. Elman et al. (2000) argue that with the limitation of public awareness, a vicious cycle is created – there is less funding for research, and less money for services. Communication partners such as caregivers and health workers therefore have an important role as social activists in increasing community awareness, because they have regular relationships, or work with people with aphasia (Code, 2020). Increased awareness is, therefore, not only important in Vietnam at an individual level, to lessen barriers that people with aphasia face because of a lack of understanding when trying to reintegrate into community life (Elman et al., 2000; Flynn et al., 2009), but also at a broader level to advocate for better funding and government support for speech and language therapy services. This aligns with other previous research identifying that a focus on community-based education about communication and swallowing disorders is important to the emerging speech and language therapy profession in Vietnam in order to advocate for the profession (Atherton et al., 2020). In particular, to address disparities between services for adults with communication disabilities compared to children, and to expand community-based rehabilitation services which continue to face financial, human resourcing and infrastructure limitations (Atherton et al., 2020).

Meaningful and relevant treatment

People with aphasia identified a recommendation that treatment should be meaningful and relevant and emphasised the desire for treatment to focus on individual needs for reintegration into home and community life. Within this theme, a particular focus for a number of participants was a desire for treatment to enable their return to work. Stroke is typically considered an older person’s disease, however, younger stroke survivors represent a unique group, for example, they have a higher likelihood of a more complete functional recovery, stay in rehabilitation longer, and are more likely to be employed and have dependents at time of stroke (Black-Schaffer, 2009; Teasell et al., 2000). Because younger survivors live longer with disabilities, there is a greater societal cost if they are unable to resume employment post-stroke and become dependent on family and government support. The desire to return to work is therefore, a defining rehabiliation need for this cohort. People with aphasia are less likely than stroke survivors without aphasia to return to some form of suitable employment (28.4% compared to 44.7%), with the presence of aphasia likely being predictive of an individual’s inability to gain employment post-stroke (Graham et al., 2011).

In Vietnam, younger people account for the vast majority of the population, with only 7.7% of the population over 65 years of age (Mai et al., 2022). Low or middle income countries experience up to 23% greater incidence of stroke than high-income countries (Feigin et al., 2014), and stroke is more likely to occur at a younger age leading to greater burden of care (Nguyen et al., 2019). A study of over 6000 patients admitted for first time stroke at a major hospital in Vietnam found median age of stroke was approximately 10 years younger compared to high-income nations, concluding this was mostly because of cardiovascular disease risk factors such as smoking rates (Nguyen et al., 2019). In the current study, six of the eleven participants with aphasia were younger than the retirement age in Vietnam (60 years of age), but only one was currently employed. Participants expressed a desire to earn extra income to help them become more independent in life, and reduce family and social burden. This was reflected in their prioritisation of a new recommendation in the Best Practice Recommendations regarding meaningful treatment to support individual goals such as returning to work.

Strengths, limitations, and future research

This study built upon previous research about best practice recommendations for aphasia services by including people with aphasia and caregivers in Vietnam, a low-middle income nation with newly emerging speech and language therapy services. A strength of the research was that it addressed the urgent need for contextualising best practice guidelines for low-middle income nations as a priority for improving translation of evidence into practice taking into consideration cultural, economic and geographical constraints (Gururaj et al., 2022). Themes identified by participants highlighted priorities for changes in aphasia management in Vietnam at dual levels. First, at a service development level, the high prioritisation by participants of easier access to services reflects the current insufficiency in numbers of speech and language therapists practising in Vietnam, with services predominantly clustered in major cities. Findings from this study provide further support for the necessity of continued growth and advocacy for the speech and language therapy profession and the need for expansion of community based rehabilitation. Participants’ recommendations for telerehabilitation, group therapy, and the need for improved information and resources for training caregivers in communication and the self-management of therapy at home might provide some guidance for future areas of feasibility research to improve efficiency and reach of speech and language therapy services within Vietnam’s over-burdened healthcare system. Better access to professional psychological services also highlighted a potential gap in services for both people with aphasia and caregivers. At an individual level, people with aphasia desired more relevant meaningful therapy, with a particular focus on return to work for a number of participants, which currently practising speech and language therapists might take into consideration. Finally development of information and resources in the Vietnamese language and a desire for increased community awareness are needs that might be addressed at both a service and individual level.

A limitation of the current study was its small sample size. However, the participants selected were diverse in terms of sampling criteria, providing important information about the validity of the recommendations for the Vietnamese population. The study was conducted only in the South of Vietnam, hence further research in other regions could be undertaken to account for geographical differences in culture as well as conditions of access to health care services across Vietnam. Further research might also consider incorporating the views of speech and language therapists and other stakeholders such as service managers in Vietnam to gain their perspectives on the relevance, comprehensibility and comprehensiveness of the Best Practice Recommendations within the Vietnamese context, and to identify barriers and facilitators to implementing the guidelines in practice.

Conclusions and implications

Implementing evidence-based practice is challenging for speech and language therapists in low-middle income nations such as Vietnam, where speech and language therapy is a newly emerging and under-resourced profession. People with aphasia and caregivers in Vietnam found the international Aphasia United Best Practice Recommendations to be mostly relevant, but provided suggestions for a number of new priorities reflecting the unique cultural, economic and healthcare environment in Vietnam. The high prioritisation by participants of easier access to services and community based rehabilitation provides support for the necessity of continued growth and advocacy for the speech and language therapy profession, while suggestions of telerehabilitation, group therapy and improved access to information and resources provide a focus for research into the feasibility of expanding speech and language therapy services in these areas in the future to improve efficiency of care.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

Associate Professor Wallace receives fellowship funding via a National Health and Medical Research Council Investigator Grant [1175821]. Duc Huu Tran and Pham Dinh Ngan Thanh acknowledge support from the US Agency for International Development through the “Promoting the rights of people with disabilities in Viet Nam” program.