"We got there in the end…. somehow, we got there": a qualitative study of healthcare professionals providing care in the community to people with chronic aphasia, and how technology could assist

Abstract

Purpose

Little is known about the experience of healthcare professionals (HCPs) in the community providing healthcare to people with aphasia. In this study we aimed to explore the experiences of community HCPs in healthcare conversations with people with aphasia, and whether a high-tech, purpose-built aphasia app could assist.

Methods

A generic qualitative study was conducted. HCPs from seven different clinical backgrounds were interviewed and data was thematically analysed.

Results

The experiences of healthcare providers providing healthcare to people with aphasia were identified in six major themes. These were: (1) Healthcare communication topics; (2) HCP knowledge; (3) Communication exchanges during the interactions (4) Communication impacts on care; (5) Interactions and relationships grew easier over time; and (6) How technology could help interactions.

Conclusions

HCPs with more aphasia knowledge reported having more positive experiences. Unsuccessful interactions were believed to lead to negative emotional responses in people with aphasia and HCPs, and that miscommunications could lead to compromised care. HCPs reported that interactions and relationships with people with aphasia grew easier over time. HCPs need system level support to acquire the knowledge and skills needed to engage people with aphasia in effective healthcare conversations. Technology has potential to improve interactions.

Implications for rehabilitation

• The overall experience of Health care professionals (HCPs) providing healthcare to people with aphasia was reported to be challenging, taking extra emotional and intellectual effort and time.

• When communication was unsuccessful this often led to emotional distress for both the HCP and person with aphasia and compromised care for the person with aphasia.

• HCPs with more knowledge and skill, who had conversation partner training, were more likely to have successful communication interactions.

• More system-level supports such as conversation partner training, and technology support were perceived to be beneficial.

Keywords:

• Aphasia
• chronic aphasia
• healthcare interactions
• community healthcare professionals
• technology
• conversation partner training

Introduction

Aphasia is a chronic communication disability caused by acquired brain injury, impairing the ability to speak, understand, read, and write [1]. Aphasia affects 140,000 people living in Australia [2], more than 350,000 people living in the UK [3], and two million people living in the United States [4]. People with aphasia are a vulnerable population, who describe feeling powerless and not being heard, with whom communication can be neglected [5]. These poor communicative interactions may have serious consequences if people with aphasia or healthcare professionals (HCPs) are unable to convey vital healthcare information. Given the difficulty with communication, it is not surprising that people with aphasia have poorer health outcomes when compared to stroke survivors without aphasia [6].

Healthcare communication between HCPs and people with aphasia in hospitals has been relatively well-researched. The findings of several qualitative studies indicate communication can be challenging. People with aphasia describe repeated experiences of not understanding, and interactions being perceived as condescending, causing them to socially withdraw [5]. People with aphasia develop negative attitudes towards their healthcare when HCPs don’t communicate directly with them, and when information is delivered too fast or contains medical jargon [7]. According to Carragher [8], clinicians realise that people with aphasia require support, and want to assist people with aphasia. However, they feel fear and an impending sense that communication will be difficult, frustrating, and may be ineffective. A meta-synthesis of studies exploring patient-provider communication in hospitals revealed several practices that may assist [9]. These include techniques to support conversations with people with aphasia, dedicating extra time for communication, and ensuring access to communication aids such as individually monitored health records or mobile technologies to assist hospital communication [9].

In contrast to hospital-based healthcare communication, community-based healthcare communication for people with aphasia is an under-researched area. Burns et al. [10] explored the experiences of people with aphasia (n = 6), caregivers, (n = 6) and community physicians (n = 6) about healthcare conversations. Results from qualitative interviews revealed people with aphasia tend to rely on family members during consultations to participate in discussions about their healthcare. Physicians in the study reported feeling underprepared for communication breakdowns and had few strategies to facilitate communication [10]. Low-tech communication options such as drawing, writing, alphabet boards and notebooks were suggested, but there was no mention of high-tech AAC such as apps. While Burns et al. [10], focused on the interactions with medical professionals, no research has been conducted on the experiences of other community-based HCPs.

There are different ways to support people with aphasia in their interactions. One common approach is to provide education and training to the conversation partner, called conversation partner training (CPT) [11]. CPT is a technique where the conversation partner is given knowledge and skills about how to communicate with the person with aphasia using strategies and communication resources [11]. There is the level I research evidence that CPT programmes such as Supported Conversation for Aphasia (SCA) improve communication participation for people with aphasia [11]. In a recent systematic review, recommendations were to focus on using CPT with people with chronic aphasia [11]. According to Van Rijssen et al. [12], many people with aphasia were dissatisfied with the way that HCPs provided healthcare information, and inadequately used CPT. Shrubsole et al. [13], have described clear strategies for implementing CPT interventions in the subacute setting, however, there is limited evidence concerning the implementation of CPT interventions in the community setting.

Another way to support people with aphasia to communicate is by using technology. Over the last 10 years, technology has revolutionised general healthcare communication [14]. There are now lighter, more portable, and socially acceptable devices and apps to assist communication. These communication aids have the potential to allow people with aphasia to participate more independently in healthcare communication [15]. However, the application and use of such technologies for people with aphasia remain under-researched. One qualitative study in the United States of America involved interviews with nursing staff (n = 43) on their attitudes towards using mobile technology in hospitals [16]. Most respondents only had experience with low-tech aids, such as pen and paper, or alphabet boards. Two-thirds of respondents indicated they could see multiple potential uses for portable smart devices at the bedside, including helping to communicate about basic needs and social communication. Lack of time and training were perceived as barriers to device implementation [16]. Despite the vast range of devices and apps available little is known about their acceptability and use to support patient-provider communication [17]. While research suggests that assistive technology is useful for increasing independence and participation in communication, users are often frustrated with the technology [17]. It is anticipated that for large-scale uptake of communication apps and devices for people with aphasia, they should be intuitive to use, fit for purpose, and be available on mainstream devices such as smartphones to support communication interactions [18]. Recently, an Aphasia App has been developed in Australia and might provide a possible solution [8]. The Aphasia App is an app that has been developed to be used by people with aphasia and/or health professionals to assist meaningful interactions. The app was developed in a 3-phase process, collaborating with people with aphasia, their family members, and health care professionals. The initial focus groups explored participants’ experiences communicating with aphasia, then discussed possible solutions to support healthcare communication, including features for an ideal app. Phase 2 involved workshops giving participants the opportunity to give feedback on the app’s first prototype. Phase 3 is ongoing and being investigated in a pilot study involving people with aphasia looking at the efficacy of the app [8]. We explored the Aphasia App with participants in this study.

In summary, HCPs experience challenges communicating with people with aphasia, and there may be benefits to using technology to support communication. However, there is a lack of knowledge about the experiences of people with aphasia and HCPs in community healthcare interactions, and a paucity of evidence about how technology, such as an app, could support healthcare communication with people with aphasia. This study aimed to explore the experiences of HCPs in healthcare conversations with people with aphasia in the community, and whether a high-tech, purpose-built aphasia app could assist.

Aims

1. To examine the experiences of community HCPs in healthcare communication with people with aphasia.

2. To explore the perceptions of community HCPs on how technology may assist interactions with people with aphasia.

Methods

Study design

A generic qualitative approach was chosen to explore the experiences of HCPs regarding their communication interactions with people with aphasia, and how technology may assist. This approach was selected to develop an understanding of the representation of human experiences of the individuals, as described by Bradbury-Jones., et al. [19]. The study is reported consistent with the criteria for reporting qualitative research (COREQ) checklist [20].

Participants

The study reported here is part of a larger study, in which interviews were conducted with people with aphasia and their significant others about their experiences of healthcare interactions with community HCPs. This data will be reported elsewhere (manuscript in preparation). As part of that study, people who had been living with aphasia for 2-11 years were invited to nominate HCPs who they’d had significant interaction with in the past six months. The researcher then sent an invitation to the nominated HCPs about the HCP experiences study. Additionally, a flyer with a short explanation of the aims of the study was distributed via professional newsletters, email, and social media groups to reach a range of different HCP groups including Physicians/General Practitioners (GPs), Physiotherapists, Occupational Therapists, Podiatrists, Dentists, Pharmacists, and Optometrists. Participants ranged in age from 34 – 61 years and ranged in years of experience from 5–35 years. One male and six females participated in the study. Participants were recruited via purposive sampling. Specifically, we sought the perspectives of a range of community-based HCPs who had recent experience providing healthcare to people with chronic aphasia. HCPs were eligible to participate if they were a HCP and had had at least one clinical experience with a person with aphasia within the last six months. Demographic information of recruited HCP participants is outlined in Table 1.

Table 1. Demographic information of recruited healthcare professionals.

	HCP 1	HCP 2	HCP 3	HCP 4	HCP 5	HCP 6	HCP 7
Professional speciality	GP	Dentist	Optometrist	Psychologist	Physiotherapist	Neuro Occupational Therapist	Stroke Nurse Practitioner
Self-reported number of clients with aphasia worked with in last year^a	2	1	30	1	1	30	50-60
Circumstances of the HCP interactions with people with aphasia	Private Healthcare provider working in own GP practice providing long term GP care to two people with aphasia they had experience with (over a couple of years).	Private healthcare provider working in own Dental practice providing long term dental care to person with aphasia (over 11 years).	Private healthcare provider working in a private practice providing visual assessments and prescriptions of glasses to numerous clients reported to be aphasic. Clients reportedly often returned for annual check-ups.	Private healthcare provider working in a private practice providing long term psychology care over a year or so to the one person with aphasia.	Private healthcare provider working in a private practice providing long-term home-based service for NDIS participant with the one person with aphasia.	Public healthcare provider working in a specialist stroke team for large public health service, providing short term time-limited outpatient and home-based rehabilitation to people with aphasia within the stroke team.	Public healthcare provider working in a specialist stroke team for large public health service, providing short term time-limited outpatient and home-based education and support to people with aphasia within the stroke team.
Received supported conversation training for PWA	No	No	No	No	No	Yes	Yes

^a At least one client seen in the last 6 months to be eligible for interview.

Data collection

Data collection was completed by the first author, via semi-structured interviews, between September 2021 and April 2022. The first author conducted the interviews. She is a female researcher completing a Master’s degree in rehabilitation studies and aphasia and has worked clinically as a Speech Pathologist predominantly in community and home-based adult neurological rehabilitation for over 20 years. The first author had not previously met the participants being interviewed. Each HCP participated in a semi-structured interview about their experience of providing healthcare to people with aphasia and their significant others in the community, and their opinions about whether technology could assist these interactions. Participants were also asked to look at a prototype of the ‘Aphasia App’ [8] to support them to consider what technology might be able to provide. An interview guide was used to direct the interview, however there was flexibility to allow the researcher to be responsive to the participants’ responses. Following the first interview, minor adjustments were made to the interview guide to ensure that questions were clear and eliciting the desired information from participants. The modified interview guide is shown in Appendix 1.

Each interview was conducted via zoom and audio and video recorded for transcription purposes. Transcription software Otter.ai [21] was used to assist transcription, with editing completed manually from audio and video recording afterwards. Each interview was transcribed verbatim.

Data analysis

The transcript from each interview was analysed using thematic analysis as described by Braun and Clarke [22]. This method allows the researcher to analyse shared meaning and experiences, finding patterns and themes pertinent to the research question [22]. An inductive approach to data coding and analysis was chosen, where codes and themes were developed from the content of the data itself. The process involved reading and re-reading the interview transcripts as the researcher became familiar with the content of the data. NVIVO software was then used to develop initial codes by going through each interview systematically. Codes were named with descriptive labels as they were generated. This process was repeated for each interview until the entire data set was coded. Codes were then revised, re-coded, collapsed, and clustered across interviews. Patterns, similarities, and meaning were generated through the coded data set in order to develop sub-themes and themes. The relationship between themes was also explored, including how the findings related to the research questions overall.

Rigour

Rigour was ensured by a process of frequent debriefing between the first, second and last authors. The first, second and last authors read through the transcripts, reviewed, and cross-checked codes and categories. This led to consensus on the development of sub-themes, that were grouped further into main themes.

Key observations and reflections by the first author were kept throughout the data collection and analysis process, to enhance critical self-reflection and reflexivity [23], including reflection upon her own biases and assumptions going into the study. Strategies were put in place in the data collection to counteract any identified bias. For example, one assumption made by the first author prior to the study was that HCPs would report poor experiences of healthcare communication with people with aphasia. This was deliberately counteracted by asking questions within the interview about positive experiences of healthcare communication with people with aphasia.

Another method of enhancing rigour was checking in with participants during the interview and rephrasing and summarising to ensure the researcher had understood their intended message. Thick description and quotations from the interview transcripts have been included to convey a sense of the experience and enhance credibility [23].

Results

Analysis identified five major themes related to HCPs experiences of healthcare communication with people with aphasia in the community. These were: (1) Healthcare communication topics, (2), HCP knowledge, (3) Communication exchanges during the interactions, (4) Communication impacts on care, and (5) Interactions and relationships grew easier over time. One major theme was identified in relation to perceptions of technology titled (1) How technology could help interactions.

Theme 1: Healthcare communication topics “We can’t really predict what comes through your door…. it’s so wide….in general practice it could be anything really… from women’s health to haemorrhoids”

Participants identified an extensive array of healthcare topics that HCPs might need to discuss with people with aphasia. Topics included gathering case history information, getting to know the person, and finding out what their concerns were; “we often talk pre-stroke, post stroke, what they were like before, what changes they have noticed post stroke” (Psychologist) and “asking quite a lot of questions,…. a lot of topics revolving back to family stuff… looking at dynamics (Psychologist).

Healthcare communication also involved assessments including cognitive, psychological, and eye assessments; “if there is any visual impact post stroke…sometimes they develop double vision… sometimes people lose their focus… seeing what things they previously were comfortable doing without any glasses, and to see if there’s any blood clots in the eye” (Optometrist).

Healthcare professionals also discussed education as an important part of their healthcare communication. Education included stroke education and prevention; “I think it’s really important they know what has happened to them…because I’d hate to think people don’t understand what’s happened to them…I think they need to know they’ve had a stroke, and how to prevent another one” (Stroke Nurse Practitioner), education about eye changes and driving eligibility “whether they are eligible for driving after a stroke. and that’s a challenging one, because if they are not, they get very, very upset” (Optometrist), social security options “from my perspective, understanding where he thought he was at with the Centrelink process and what he needed to do next was challenging (Neuro Occupational Therapist), and living arrangements.

HCPs talked about the importance of giving the person with aphasia reassurance, and hope in recovery, to motivate and empower them and give them confidence “I think it’s really important for them to have the motivation and the knowledge that your brain does recover… even though it is slow, and it gives them some hope for the future” (Stroke Nurse Practitioner).

The GP discussed the variability of each appointment, and the vast array of conditions that may need to be discussed in different consults, saying “We can’t really predict what comes through your door…. it’s so wide….in general practice it could be anything really… from women’s health to haemorrhoids” (GP).

The topics that HCPs need to discuss with people with aphasia are vast and often complex. Many of the topics require detailed and abstract language to adequately explain and explore the issues.

Theme 2: HCP knowledge “He told me he had problems with communication… it would have been easier if he’d given me a title or something… then I would have been able to do a bit of research”

Most HCPs reported a lack of knowledge about aphasia which limited their ability to have a detailed conversation. These were detailed in three sub-themes described below: sources of knowledge, assumptions, and public awareness.

HCP sources of knowledge

Healthcare providers identified several ways that they acquired knowledge about aphasia. These included:

Conversation partner training (CPT)

Of the seven HCPs interviewed, two had training in CPT [10]. These were HCPs who had worked in stroke teams and had significant experience communicating with people with aphasia “I’ve participated in a study done by the speech team… around their supported communication package, and we received training through that, but also more informally across the course of the years by the team speech pathologist” (Neuro Occupational Therapist). The other 5 HCPs had no training in CPT “I wouldn’t know that sort of thing (CPT training) exists” (GP).

Knowledge through experience

Two HCPs felt confident working with people with aphasia through their experience working in neuro rehabilitation or stroke teams “I do feel quite confident, because I have worked in stroke for quite a long time” (Neuro Occupational Therapist). However, of the remaining five HCPs had only ever provided care to one person with aphasia “Since I hadn’t ever worked with anyone with aphasia, I wasn’t quite sure what to expect” (Psychologist).

Knowledge through additional study

Another potential source of knowledge was additional study in the neurosciences, but this wasn’t specific to aphasia “So because for my PhD, I sort of work with the neuro patients…. I’m a bit more specialised when it comes to that” (Optometrist).

Knowledge about role

Some HCPs expressed a concern that students in their profession did not think that aphasia or rehabilitation was part of their role; ‘‘Medical students probably don’t see the value of rehab… they think ‘that’s not my problem’.’’ (GP). Professional education was described as important, and that teaching and re-teaching information was imperative for HCPs to gain the knowledge they needed.

Depending on the HCP’s knowledge or lack thereof, different assumptions about the people with aphasia were made.

Assumptions

HCPs made both positive and negative assumptions about people with aphasia depending on the level of their knowledge. Positive assumptions included believing in the capability and competence of the person with aphasia “I think (he’s) a very capable and competent person (Dentist), and assuming that the person with aphasia had a support system in place. Negative assumptions, based on limited knowledge of aphasia, implied that aphasia was associated with cognitive impairment or psychiatric condition; ‘‘She had a major mental disability as well, which I think is most of the time associated with aphasia’’ (Optometrist)

Public awareness

HCPs recognised that there was a lack of knowledge about aphasia in the community. Many HCPs stated they had not previously known the term “aphasia”. HCPs felt that having an awareness of the condition and knowing the term would have assisted them in gaining knowledge; ‘‘It would have been easier with a title…I would have been able to do a little bit of research’’ (Dentist).

The level of knowledge the HCP had about aphasia and their skill in supporting a conversation with people with aphasia appeared to influence how successful the healthcare interaction was. The HCPs who had received CPT and thus had more knowledge about aphasia, reported being able to discuss more complex and in-depth topics with people with aphasia. This led to HCPs believing the person with aphasia had a more positive experience. This is covered in more detail in theme 3.

Theme 3: Communication exchanges during the interactions: (person with aphasia was)“quite often relieved, to be able to communicate that particular complex thing they hadn’t been able to quite get to the bottom of with other people”

It was evident that HCPs tried many approaches to improve healthcare interactions with people with aphasia. HCPs also observed people with aphasia using many strategies, some of which were successful, others not. HCPs believed that the success of strategies directly impacted on the emotional responses of the person with aphasia as well as their own emotional experiences.

People with aphasia became emotional when interactions were successful or unsuccessful

HCPs described people with aphasia as having emotional responses during interactions when the interaction was unsuccessful. Some examples of strategies that didn’t work leading to people with aphasia having negative emotional responses were distractions in the room, a person with aphasia attending alone without a support person, support person talking for the person with aphasia, HCP having no experience to draw on, and not using communication tools such as gesture or visual aids. Some HCPs described; “I could identify that he was upset, but didn’t have the skills to be able to give him any assistance… I didn’t know what I had to do to give him support” (Dentist) and “I could see him getting quite frustrated… it was difficult because he was really trying to express himself, and I couldn’t figure out what he was saying (Psychologist). They described the people with aphasia as appearing overwhelmed, and that the person with aphasia’s communication was negatively affected when they were upset; “Sometimes he would get quite overwhelmed, and we’d just have to stop the session” (Psychologist). HCPs also described observing people with aphasia experiencing frustration; “With my guessing sometimes she gets a bit frustrated” (Physiotherapist). Some HCPs described the isolation the people with aphasia felt. One HCP described receiving feedback that the person with aphasia’s experience was poor, “we got the feedback he was finding it difficult to come and see me, because I wasn’t supporting him, and I didn’t know how to support him” (Dentist).

Conversely after successful interactions, HCPs described positive emotional responses from the people with aphasia. Some examples of strategies HCPs described that did work included asking the person with aphasia for communication strategies, using simpler language, gesture, and visual supports, using guesswork, allowing more time during interactions, clarifying the message, and involving support people. Some people with aphasia expressed gratitude at being allowed time in interactions, and people with aphasia were thankful for communication support; “They are really, really thankful for the support that they are getting, and being able to express themselves with that support” (Neuro Occupational Therapist). Some HCPs described people with aphasia being pleased they could understand; “Him doing a big smile, a thumbs up….showing his pleasure that I had understood what he was trying to say” (Psychologist). A more experienced HCP described the person with aphasia’s relief to finally communicate about complex topics; “quite often relieved, to be able to communicate that particular complex thing they hadn’t been able to quite get to the bottom of with other people” (Neuro Occupational Therapist).

HCP investing effort in their communication interactions with people with aphasia

HCPs reported investing an enormous amount of effort in their communication interactions with people with aphasia. HCPs described difficulty understanding and engaging with people with aphasia, that people with aphasia had difficulty understanding them; “I think there was also a problem with her understanding what I was saying…” (Physiotherapist), and that sessions took extra time; “I’m used to moving quite quickly through a session and covering multiple things, and suddenly feeling like that was halved as a result of the language…[breakdown]” (Psychologist). Miscommunications were also frequently described by HCPs;” I would often wonder if this is what he’s actually trying to say” (Psychologist). One HCP described a situation where the person with aphasia was COVID positive, but this was not revealed in initial communications via text, the person with aphasia responding ambiguously with both yes and no to questioning. The HCP expressed frustration; “She should just say ‘Yes I’m COVID positive’ instead of just saying ‘Yes, yes, yes’ to the questions.” (Physiotherapist), This miscommunication had serious consequences as the Physiotherapist was unable to determine if the client was COVID positive prior to her visit. Details of all the communication situations described by HCPs are provided in Table 2.

Table 2. Communication situations that HCP believes are helpful and unhelpful within the interactions.

Communication situations HCP believe are helpful within the interaction.	Avoiding chit chat (not doing small talk, trying to keep the communication minimal) Relying on objective assessment (making sure do really good objective testing so they don’t need to respond much) Guess work Allowing more time, slow rate of speech Reducing distraction, i.e., closing door Doing one thing at a time Using eye contact, gesture Taking non-verbal cues from the person with aphasia, i.e., facial expression, gestures Modelling behavior, i.e., “using gesture to assist auditory comprehension.” Repeating back information (to ensure comprehension) Using visual supports, i.e., diagrams, photographs, writing, resources Using technology, i.e., showing videos, googling images Providing person with aphasia with written info for later use Asking person with aphasia for their communication strategies Support from Speech Pathologist, utilising MDT Person with aphasia opened up more when attending alone (rather than with support person) Assistance of significant others; before the interaction (preparing together beforehand), during the interaction (assisting communication), after the interaction (clarifying miscommunications or help with complex documentation) Providing reassurance
HCP situations that are not helpful within the interaction	Distractions in room, i.e., music, others talking HCP had no expertise to draw on Not using resources (if limit self to just talking and don’t use accessory communication tools) Family member doesn’t support interaction ,i.e., talking for the person with aphasia Person with aphasia attending alone (with no support person to assist)
Observed successful strategies person with aphasia uses	Person with aphasia telling the HCP what communication strategies help Using writing Texting Using technology/electronic communication aids Using Yes/No Taking their time Using gesture Pausing and taking deep breaths

Key: acronyms; MDT: multidisciplinary team.

Overall, it was evident that both HCPs and people with aphasia were working very hard during healthcare interactions. Sometimes interactions were successful which led to positive emotional responses. Sometimes interactions were not successful leading to negative emotional responses from people with aphasia and having a detrimental effect on HCPs.

Theme 4: Communication impacts on care; “I never got to the bottom of her pain”

Another theme identified from the data was the impact that the healthcare communication interaction had on the provision of healthcare. Miscommunication was commonly described by HCPs, often leading to compromised care for people with aphasia. This miscommunication undoubtedly impacted people with aphasia; however, it also had a myriad of negative effects on HCPs. These are described in two subthemes: miscommunication leading to compromised care; the effects of miscommunication.

Miscommunication leading to compromised care

Miscommunication impacted on HCPs ability to conduct usual care, at times leading to compromised care. Difficulty taking a case history; “There was no carer, no family member, so all the history I had to get from her which was difficult” (Physiotherapist), conducting standard assessments (e.g., assessing cognition or eye tests); “Trying to assess his cognition say through a Mini-Mental is even more challenging” (GP); and “It is different to a normal patient, like how do you do your eye test in a certain way” (Optometrist), and assessments of mood were commonly described as challenges; “He (person with aphasia) has depression as well…so trying to assess his risk is difficult” (GP). One HCP described difficulty assessing pain, a situation where the person with aphasia was trying to indicate about a pain in her leg. Despite multiple attempts and strategies at trying to communicate together, the HCP admitted; “I never got to the bottom of her pain” (Physiotherapist).

Miscommunications also impacted on therapy and management. Multiple HCPs described difficulty being able to provide education such as secondary stroke prevention education; “Trying to make sure he knew what was going on,… we really wanted him to attend his appointments, because we thought that was really important for secondary prevention” (Stroke Nurse Practitioner). Telehealth was reported as being challenging for people with aphasia; “We do a lot of Telehealth, but that’s always a bit challenging for people with aphasia… so it’s hard… but we do the best we can” (Stroke Nurse Practitioner). Describing therapy techniques was also difficult; “It’s hard to communicate what I’m wanting them to do…how I’m wanting them to move and engage with their upper limb in a day-to-day setting (Neuro Occupational Therapist). Multiple HCPs described a lack of therapy progress; “I don’t feel like there was a lot of progress. Which was a shame, it’s always hard to admit that, but there really wasn’t a lot of progress” (Psychologist). Unfortunately, miscommunications also led to some HCPs prescribing generally rather than specifically to the individual, which could lead to under- or overtreating people with aphasia; “We can prescribe for them the best we can, but…. when you don’t get the answers, I commonly use something general (glasses) that I think is needed… but I could have overtreated or undertreated in that scenario” (Optometrist).

Issues with consent were also raised as a result of these miscommunications; “You can’t even get the consent properly, because she doesn’t communicate at all……. then there are those patients who just like saying yes to everything, they just nod for everything” (Optometrist). HCPs also described concerns about consent issues after the interaction such as comprehension of a service agreement for the National Disability Insurance Scheme (an Australian government provided healthcare service); “I’m not sure how much she would take in, it’s quite a long document, I don’t know if she would understand it” (Physiotherapist). HCPs reported feeling as though people with aphasia had a poor experience and compromised care as a result of these miscommunications; “They (people with aphasia) have a poor experience, and quite rightly so, because the poor dentist hasn’t understood, you know, or depends, sometimes were just short on time” (Dentist).

Effects of miscommunication on HCPs

HCPs consistently described negative emotional consequences when miscommunications compromised the care they were providing. They described finding sessions with people with aphasia hard, and that they felt drained and overwhelmed. HCPs described needing more time than standard appointments and planning for longer consults for people with aphasia. HCPs without knowledge and training in communication with people with aphasia described not knowing how to support people with aphasia; “I remember thinking, I don’t know how to do these sessions now” (Psychologist). One HCP described; “I remember very clearly almost kind of dreading the sessions” (Psychologist) and wanting to refer on; “I remember that feeling of wanting to refer on to someone who had significant experience or training in that level of work” (Psychologist). These emotions also led to one HCP describing that they would not want a caseload of people with aphasia; “It’s probably not ideal, I probably wouldn’t want every patient to have aphasia” (Physio). There was a strong sense of the clinician’s self-doubt; “I was questioning whether I was on the right track” (Psychologist). HCPs explained they felt they could not do the best for people with aphasia “I just do the best I could… but it is absolutely challenging, and you can’t really do the best for the patient” (Optometrist).

Theme 5: Interactions and relationships grew easier over time “the more sessions we had, the better I became at understanding how he was talking”

Despite the difficulties, HCPs described many ways in which their interactions and relationship with people with aphasia grew easier over time, as more successful communication strategies were used, and trust and rapport was built. These are discussed in two sub-themes: relationships grew easier over time; and interactions grew easier over time.

Relationship grew easier over time

Some HCPs described the interactions as being difficult at first, however, the majority of HCPs described getting used to the person with aphasia over time; “The more sessions we had, the better I became at understanding how he was talking” (Psychologist). The build-up of trust and rapport was a strong theme throughout HCP experiences; “I do feel like the therapeutic relationship was key for him to feel comfortable with me, that was quite a key thing for him to keep coming back” (Psychologist).

Interestingly, multiple HCPs reported that people with aphasia sticking with the same HCP made a difference to improving interactions over time; “They make sure they come back to the same HCP they are comfortable with, and they’ve seen for years and years. So, we also know them and it’s easier” (Optometrist). Another reported; “He’s been coming for 10 years now….I thank him very much; he kept persevering with me” (Dentist).

Interactions grew easier over time

With longer term relationships and rapport being built up, HCPs described having developed communication strategies over time; “Now I’ve got very specific things that I need to do…. I’ve worked out how we could communicate” (Dentist). This led to HCPs hoping this resulted in a better experience for the person with aphasia “I would hope that his experience over the last couple of years have been a lot more positive than what he’s had before” (Dentist).

HCPs reported more progress in their interactions over time e.g., “I remember we got to quite a crucial point in therapy…. yeah, we got there in the end…somehow, we got there” (Psychologist).

Despite describing relationships improving over time, and having more strategies for communication, satisfaction with interactions varied. Some HCPs expressed feeling reasonably satisfied; “I would say seven or eight out of 10 in terms of satisfaction, but definitely acknowledging that there’s always room to improve in this space” (Neuro Occupational Therapist). Conversely, some HCPs reported they weren’t completely satisfied “Part of what I enjoy is getting to know people like chatting, we talk a little bit but not easy sort of chatting.” (Physiotherapist). Another HCP described; “I would say I’m unsatisfied, because there’s always more that could be done” (GP).

Theme 6: How technology could help interactions

The second research aim was to examine how technology may assist healthcare interactions with people with aphasia. In general, HCPs were very positive about the potential for technology to assist their interactions with people with aphasia; “That would go a long way in making the communication easier”(GP) and identified a number of enablers and barriers.

HCPs also identified ideas to include in technology, for example, “It would be useful to have info on their life experiences. like…this is what I enjoy, I’ve travelled to these places, or I come from here……being able to personalise would be really useful… info about their social supports, and who should I be calling here…” (Neuro Occupational Therapist). HCP identified enabler and barriers, and ideas to include in technology are detailed in Table 3. The table outlines which items were present in the Aphasia app [8] prototype that they viewed, and which were ‘new’ ideas identified by the HCPs.

Table 3. Subthemes for how technology could help interactions.

Enablers to using tech	Understanding communication techniques for person with aphasia To make interactions easier, i.e., aiding comprehension/ expression Would embrace the technology if it came with person with aphasia^a Portable and adaptable technology Positive opinions that any technology is helpful^a
Barriers to using tech	Older clients may not be tech savvy^a Technology would need to be instigated by person with aphasia^a Uncertainty if person with aphasia could use technology^a Tried some technologies before and found it unsuccessful^a Already know person with aphasia well so don’t really need technology^a May be challenging for GPs due to large range of topics GP’s cover^a
Ideas for development in tech:	Explanation about aphasia and communication strategies “About me” section; information about family names, life experiences, social supports, personalised phrases, explanation of person with aphasia’s health conditions^a Electronic whiteboard for the HCP to write keywords, or person with aphasia to write message Pictures to help person with aphasia’s comprehension Mood scale Pain scale, descriptors of pain Yes/No to verify messages Electronic keyboard to type message or help with eye assessments so person with aphasia could point to letters. Education resources, e.g., secondary prevention for stroke, medications, complex psychology concepts^a Tech enabled pre-appointment activity, i.e., send out basic questions before appointment about what they’re coming for^a Section where person with aphasia could save notes or video function to watch later^a Prompt app, regularly updated, responsive to feedback^a App being all-in-one tool for person with aphasia.

^a Items noted with an Asterix were “new” ideas for technology identified by the HCPs, not from the prototype of the Aphasia app which they viewed.

Discussion

In this study, we aimed to examine the experiences of community-based HCPs regarding their healthcare interactions with people with aphasia and explore how technology may assist. Using a generic qualitative approach and thematic analysis of data from interviews with seven different healthcare professionals, six major themes were identified. The relationships between these themes were also explored. Our analysis suggested that when healthcare knowledge of aphasia and communication skills were low, interactions were more likely to be reported as unsuccessful. Comprehension and expression of in-depth healthcare topics were challenging for people with aphasia, requiring a skilled facilitator to enable successful communication. Without strategies to assist communication, both people with aphasia and HCPs described experiencing negative emotional consequences as they tried to navigate topics and manage communication breakdowns. HCPs reported that these miscommunications often led to compromised care for people with aphasia. Conversely, when healthcare knowledge and communication skills were high, communication interactions were reported as more often successful, with more positive experiences for both people with aphasia and HCPs and more effective care. Technology was viewed as potentially helpful in facilitating more successful communication.

These findings build on the existing knowledge of the experiences of communication between healthcare providers and people with aphasia in the hospital setting. Carragher et al. [24], found that hospital-based HCPs had negative perceptions of communicating with PWA and did not know how to help people with aphasia communicate resulting in HCPs limiting communication with people with aphasia. However, other than the study by Burns et al. [10], which focused on physicians, there has been very little research on community healthcare interactions with people with aphasia. While technology can increase independence and participation in communication [17], there is a lack of knowledge about the effectiveness and implementation of purpose-built communication apps for healthcare communication.

The findings of this study add to the research base, focusing on the experiences of a wider range of community HCPs including nursing, medicine, allied health, and psychology, and their perceptions of the impact of poor communication on healthcare delivery. The findings indicate that healthcare may be compromised by a lack of HCP communication skills and knowledge. A key finding of this study is the extra emotional and intellectual effort and time required by HCPs to provide healthcare for people with aphasia. At times, some HCPs wanted to refer the client but when they could not do so they continued to provide care to the person with aphasia. Through persistence, some HCPs reported that the interactions and relationships became easier over time.

Given the HCPs interviewed for this study agreed to participate in this study, it could be inferred that they had an interest in aphasia and healthcare communication, and it is possible therefore that the situation for other HCPs in the community may be worse than what has been captured here. It is possible that HCPs who are not able to give that extra emotional effort, intellect, and time may have even more difficulty providing health care to people with aphasia.

For the participants in this study, it appears that neither the healthcare system, the education system or accrediting bodies have resourced HCPs sufficiently so that they have the knowledge and skills to enable healthcare communication for people with aphasia. HCPs in this study attempted to navigate very difficult, complex topics that had important ramifications for the person with aphasia’s health, and potential ramifications for the HCP’s job satisfaction. This practice gap is inconsistent with the Australian National Safety and Quality Health Service Standards [25], and the United Nations Convention of the Rights for People with Disabilities [26]. Both of these standards state that all people have the right to safe, high-quality health care. HCPs have a responsibility to provide support to enable successful communication [27] but equally HCPs also have a right to receive the appropriate knowledge, skills, and resources to meet their responsibilities.

A lack of support for HCPs may have economic implications as well. While people with aphasia may require longer healthcare appointments, these will be much longer if HCPs are poorly prepared for the interaction. Staff who are better equipped will be able to provide effective communication support and enable more successful healthcare interactions more efficiently. As evidenced by one HCP in the study ‘We got there in the end…somehow we got there” (Psychologist). This suggests that HCPs resort to inefficient trial-and-error strategies to manage healthcare communication with people with aphasia. There is a need for a more systematic approach to enable HCPs to provide healthcare to people with aphasia.

This study identified suggestions to improve healthcare interactions with people with aphasia. First, HCPs need knowledge about aphasia and communication support strategies. CPT can be provided at the undergraduate/entry-level in healthcare curricula [28,29] and continue into healthcare settings [30]. CPT needs to be taught and re-taught to ensure consolidation of knowledge and skill [13]. The findings of this study suggest that if HCP knowledge was improved then HCPs would be armed with more communication strategies to enable more successful interactions. HCPs may also need other system-level support to support the implementation of CPT, such as an increase in consultation times.

When HCPs had reported applying CPT strategies, interactions were much more successful and much less distressing for the HCP and people with aphasia. However, sometimes interactions were still difficult indicating more resources were needed. HCPs would also benefit from other supports such as pre-appointment information about the person with aphasia’s communication abilities, individualised strategies to facilitate communication and information about why they were attending before the interaction. With this foreknowledge, HCPs could prepare pictorial supports regarding topics and be ready with resources to support communication prior to the appointment.

Technology may have a positive effect on improving communication. Our results indicated that HCPs prefer that people with aphasia bring their own devices and should include personalised information regarding the person with aphasia. Additional resources could include electronic whiteboards, a keyboard, yes/no/I don’t know buttons, sections for mood and pain scales and descriptors, resources for education, and a section where people with aphasia can save notes or videos for later viewing. It is important that the technology be portable, adaptable, intuitive to use, and responsive to feedback. This recommendation aligns with findings by Brunner et al. [17], who reported that technology needs to be accessible, reliable, and durable, with frequent re-evaluation for the person’s needs and preferences for technology.

Limitations and future research

Although we only interviewed seven participants, key strengths of this study are the use of in-depth interviews and thick descriptions, and the inclusion of a diverse range of HCPs. However, the study does have several limitations. The HCPs who participated in this study were likely to have been a unique subgroup of HCPs. They had been identified by people with aphasia and therefore are more likely to be HCPs who had been able to continue in a healthcare relationship with people with aphasia over time. These HCP participants may also have been motivated to participate given their relationship with people with aphasia, and/or the difficulties they experienced in communicating with people with aphasia. Further research with healthcare providers who have not had an ongoing care relationship with people with aphasia would extend our understanding of the challenges that HCPs experience in providing care to people with aphasia. Another limitation is that this study describes the experiences of HCPs in the Australian healthcare system, and the experiences in HCP’s healthcare systems in other countries might be different. Future research to examine what health care and education resources are required to support HCPs to successfully communicate with people with aphasia would also be beneficial.

In summary, our evidence argues for much greater support for HCPs providing healthcare to people with aphasia in community healthcare settings. Improving HCP knowledge of aphasia and supportive communication strategies in university education programs and in healthcare settings could result in more successful communication and ultimately better healthcare. Technology, such as a purpose-built aphasia app, may also benefit healthcare interactions and warrants further investigation.

Ethical approval

Ethics approval was obtained from the Flinders University Human Research Ethics Committee (Project ID 4709).

Acknowledgements

The authors would like to thank all of the participants for sharing their experiences and allowing this research to be possible, and also those who supported recruitment for the study.

Disclosure statement

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

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.