Article Text
PDF
Abstract
Objective People with post-stroke aphasia (language/communication impairment) and their supporters report mixed satisfaction with stroke and aphasia care. To date, however, their journey of care and the key service interactions that shape their experience have not been comprehensively explored. We aimed to investigate the lived experience of post-stroke aphasia care, across the continuum of care and by geographical location, to establish priorities for service design.
Design This is the first stage of an experience-based co-design study. We purposively sampled people with aphasia (PWA) and significant others (SOs) across 21 hospital and health service sites, community groups and by self-referral. Participants shared experiences of care in online interviews and focus groups. Touchpoints (key moments that shape experience) and unmet needs were identified using qualitative thematic analysis. Priorities for service design were established using an adapted nominal group technique.
Setting Sites spanned remote, regional and metropolitan areas in Queensland, Australia.
Participants PWA (n=32; mild=56%; moderate=31%; severe=13%) and SOs (n=30) shared 124 experiences of acute, rehabilitation and community-based care in 23 focus groups and 13 interviews.
Results Both positive and negative healthcare experiences occurred most frequently in hospital settings. Negative experiences regularly related to communication with health professionals, while positive experiences related to the interpersonal qualities of healthcare providers (eg, providing hope) for PWA, or witnessing good rapport between a PWA and their health professional for SOs. To improve services, PWA prioritised communicatively accessible education and information and SOs prioritised access to psychological and peer support.
Conclusions We identified key aspects of post-stroke aphasia care that shape experience. The needs of PWA and SOs may be better met through health professional training in supported communication, increased service availability in regional and remote areas, communication-accessible hospital environments, increased access to psychological and peer support, and meaningful involvement of SOs in rehabilitation.
- QUALITATIVE RESEARCH
- STROKE MEDICINE
- Patient-Centered Care
- Health Services
Data availability statement
Data are available upon reasonable request. Raw data are not publicly available to protect participant privacy.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
STRENGTHS AND LIMITATIONS OF THIS STUDY
This comprehensive exploration of experiences provides novel insights into the unmet needs of people with aphasia and their significant others accessing aphasia services across the continuum of care and areas of geographical diversity.
The touchpoints and priorities identified provide a foundation for quality improvement, healthcare policy and new aphasia service design.
The participation of populations often excluded from aphasia research (eg, people with severe aphasia and those from culturally and linguistically diverse backgrounds) was supported through bespoke resource development and provision of additional support.
The representativeness of participants in this study may have been enhanced through additional recruitment of linguistically and culturally diverse participants.
Introduction
Aphasia is an acquired communication disorder experienced by 30–40% of all stroke survivors.1 People with aphasia (PWA) have poor quality of life2 and are almost twice as likely to experience depression when compared with stroke survivors without aphasia.3 These poor outcomes are compounded by inequitable service access, a result of both geographical location4 and inadequate communication support in healthcare settings.5 6 PWA are often excluded from healthcare decision-making6 and the presence of communication difficulties is associated with a threefold increase in preventable adverse events in hospital.7 Lived experience underpins quality of care8 and therefore understanding PWA’s and significant others’ (SOs) experiences of stroke and aphasia care is critical to addressing their unmet needs.
The WHO defines quality of care as the degree to which health services increase the likelihood of achieving desired health outcomes.9 Health services should be effective, safe and person centred,9 and understanding the experiences of service users is critical to achieving these outcomes. Engaging consumers is central to ensuring care planning and delivery, holding personal relevance to service users.10 Furthermore, improved patient experience is positively associated with safety and health outcomes.8 Service users (including those with aphasia and their SOs) have insights into their own experiences of care, knowledge of evolving symptoms and response to treatments. Such insights can highlight areas for improvement in healthcare services and even prevent diagnostic errors.11 However, to date, exploration of the experiences and unmet needs of PWA and their SOs has focused on discrete service settings and time points in the stroke recovery journey.
While prior research12–19 confirms gaps exist, how current services are not meeting needs across care pathways and geographically diverse service settings for those with post-stroke aphasia remains unclear. For example, Tomkins et al20 conducted further analysis of data captured in 2011 (which asked PWA about their experience of aphasia, service experiences and rehabilitation goals at three specified time points), and explored satisfaction and dissatisfaction with healthcare received with participants from metropolitan settings. Similarly, van Rijssen et al21 explored the experiences of PWA communicating with healthcare professionals unique to community-based care settings, and Wray and Clarke’s19 thematic synthesis of qualitative studies identified PWA’s longer-term unmet community-based care needs. Prior research exploring specific needs also confirms gaps exist in discrete areas of practice such as access to aphasia information,12 management of mood disorders,13 communication partner training,14 treatment goals22 and more recently, communicating with healthcare professionals in an acute setting.23 However, further research aiming to build on these findings is required to determine the relative importance of needs and priorities for change, able to guide service development with PWA and SOs (across the care continuum, geographical remoteness and service contexts). Therefore, we explored the experiences and unmet needs of PWA and SOs to establish priorities for aphasia service improvement. This paper reports the first stage of an experience-based co-design (EBCD) project24 which aims to improve post-stroke aphasia services in partnership with PWA and SOs.
Methods
Patient and public involvement
This research was co-produced with patient and public involvement, specifically the research was guided by a consumer advisory committee comprising PWA (n=3; authors KM, KD, BA), SOs (n=2; authors JD, PM) and a cultural capability officer (cultural capability officer support refers to the support provided to ensure behaviours, systems and processes are conducted in a way that is culturally respectful while engaging with the Aboriginal and Torres Strait Islander Peoples of Australia involved in this research. Aboriginal and Torres Strait Islander Peoples are the First Nations peoples of Australia.). They: (1) reviewed participant information; (2) co-developed interview and focus group procedures; (3) advised on recruitment strategies, co-developed a recruitment video and co-presented to potential participants; and (4) reviewed and contributed to publications. Author GB advised on culturally safe practices for Aboriginal and/or Torres Strait Islander participants. Plain English summaries and video summaries have been prepared with and for PWA and distributed across aphasia community groups (eg, https://shrs.uq.edu.au/research/research-centres-and-units/qarc/research).
Study design
This paper reports the initial stages of an EBCD study (figure 1). EBCD draws on qualitative and participatory methods to understand experiences, determine priorities and co-design solutions.25 Detailed information about study design and sampling criteria is described in our published protocol.24
Experience-based co-design stage 2 procedures conducted with people with aphasia and significant others. NGT, Nominal Group Technique.
Participants
Participants were PWA and SOs (family member, close friend, main contact, that is, someone considered to know the PWA well) from Queensland, Australia. Eligible participants were adults (aged ≥18 years) with post-stroke (≥6 weeks) aphasia (as per Aphasia Severity Rating Scale (ASRS)26), who were able to participate in online interviews or focus groups. Exclusion criteria were aphasia due to non-stroke aetiology, or presence of neurodegenerative or neuropsychological disorder (self-report of clinical diagnoses). Participants were recruited through 21 hospital and healthcare sites, online advertisements and aphasia community groups, using maximum variation sampling.
Modifications to support inclusion
People with aphasia
Written project information was formatted to be communication accessible27 and a speech pathologist supported the inclusion of PWA. Training sessions were held to support online participation and to identify individual communication support strategies. PWA could nominate a support person to attend sessions and had the option to participate in either interview or focus group formats. Supported communication strategies (eg, using multimodal communication techniques28) were used throughout. Access to an interpreter was provided for non-English speakers.
Regional and remote areas
Where needed, participants in regional and remote areas were provided with a device and internet connection to support online participation. Participants were mailed hardcopies of materials ahead of sessions.
Methodological approach
This is the first stage of a larger project using EBCD,29 a form of participatory research.25 The current study uses a qualitative descriptive approach incorporating elements of narrative enquiry (eg, patient stories about experiences of care), phenomenology (eg, exploring experiences to identify touchpoints or emotionally charged themes related to the journey of care) and participatory design, used to understand the who, what and where of post-stroke experiences.30 Inductive thematic analysis31 was used to understand participant experiences and the implication of those experiences for future service design.32 Descriptive statistics were used to investigate patterns across data. Analysis was guided by a constructivist–interpretivist paradigm,33 acknowledging that researchers are co-creators of knowledge.
Data collection
Data collection for the experience phase occurred between May and September 2021 using: (1) semistructured interviews and (2) focus groups. Interviews enabled a deeper, nuanced understanding of experiences, while focus groups provided a broader understanding of experiences from a wider participant group across geographically diverse regions. An adapted nominal group technique34 was used in focus groups to establish priorities for service development. This technique uses a round-robin process of idea generation to ensure equal participation.34 Separate focus groups were held with PWA and SOs and group size was capped at 3 and 5 participants, respectively. An interview/focus group guide was developed comprising open-ended questions to reflect the narrative focus of EBCD experience gathering25 (see online supplemental table 1). Materials and procedures were piloted with PWA (n=1) and SOs (n=2), resulting in changes to wording of questions to improve clarity and processes to support online participation (eg, image supports and ‘aphasia-friendly’ formatting). Data collection occurred during the COVID-19 pandemic and was completed online using video-conferencing software,35 considered an acceptable approach with this population.36
Supplemental material
Procedures
An overview of procedures is provided in figure 1. Participants received interview and focus group questions prior to data collection (figure 1). Online sessions were held prior to involvement to provide training, establish communication needs and assess aphasia severity (lead author). Two researchers independently rated aphasia severity using the ASRS.26 Interviews and focus groups (facilitated by the lead author) were video and audio recorded and followed the same format: (1) each participant shared one positive and negative experience of care and identified an emotion associated with that experience; (2) participants generated ideas for service improvement which were transcribed onto an online whiteboard. Participants selected their top five ideas and ordered them from one (highest priority) to five (lowest priority). Participants assigned 100 points across their top five priorities (higher number=greater significance) to indicate relative importance. During focus groups, breakout rooms were used to support the ranking process where needed (eg, to support participants with severe aphasia). Individual rankings were visible to other group participants (see online supplemental figure 1). Participants provided feedback on process, methods and experience of involvement (to be reported elsewhere).
Data analysis
Experiential data were transcribed and thematically analysed31 to gain an understanding of PWA and SO experiences. Themes were further reviewed to identify touchpoints (key moments shaping experiences of care in positive or negative ways). Transcripts for PWA were annotated to reflect non-verbal communication.37 The six-step thematic analysis31 process was conducted by LA. A second author independently coded (BB) or reviewed (SJW) transcripts to ensure accuracy, comprehensiveness and interpretation of meanings. Variations in interpretations were discussed until a consensus was reached and a record of queries, disagreements and reflections maintained.
Themes of positive or negative experience (and associated emotions) were mapped to three phases of care: (1) in-hospital: hospital-based care; (2) returning home: care during transition (first few weeks preceding or post-return home or to the community) or transferring to alternative service; and (3) long-term care: care in the community (eg, day hospital appointments, in-home community-based rehabilitation). A themed understanding of unmet needs was developed based on factors contributing to negative experiences per touchpoint. Finally, each touchpoint and unmet need was reviewed against principles of person-centred care.38 A detailed overview of analysis is available in online supplemental table 2. Priorities for service development were combined across interviews and focus groups using qualitative content analysis39 (completed by LA, reviewed by SJW). Individual responses contributing to each themed priority were scored and summed.40 Stakeholder experience maps were developed to provide a visual synthesis of healthcare experiences across the continuum of care.41 These maps will be used in future EBCD stages.
Data quality, rigour and reflexivity
LA, SJW, DAC, and BB are qualified speech pathologists. LA completed this project as part of her doctoral studies. SJW and DAC are experienced researchers in the study population. SJW and VJP are experienced qualitative researchers and VJP an experienced participatory designer familiar with EBCD. Themes were reviewed and refined by LA, SJW and DAC. Final touchpoints and representative quotes were agreed by all authors. Transferability is reinforced by the diversity of participant sample which includes people often excluded from research (people in regional or remote areas without internet access, and people with severe aphasia). The research (where it follows standardised methods) is reported in alignment with the Consolidated criteria for Reporting Qualitative research guidelines for qualitative research studies42 and the Guidance for Reporting Involvement of Patients and the Public43 guidelines for reporting patient and public involvement.
Results
PWA (n=32) and SOs (n=30) participated in 1 of 23 focus groups (duration 67–171 min, mean=105 min) or 13 interviews (duration 40–117 min, mean=68 min). Participant characteristics are provided in table 1. Participant experiences shared spanned the continuum of care, from point of stroke, up until participation in the research. Three focus groups involved participant dyads (ie, a PWA attending with an SO). Illustrative quotes are presented with participant codes and categories of geographical remoteness and aphasia severity. Presentation of touchpoints includes an overview of positive experiences; however, reporting focuses on highlighting negative touchpoints associated with identified gaps in care.
Overview of participant characteristics
Positive touchpoints
Seven touchpoints were drawn from data captured in response to being asked to describe their best experience of stroke and aphasia care: (1) coordination of care (PWA, SO); (2) communicating and connecting with others (PWA), inclusion in care (SO); (3) making progress (PWA), positive outcomes (SO); (4) mode of service delivery (PWA, SO); (5) healthcare service (PWA, SO); (6) access to care (eg, availability/qualifying process) (PWA, SO); and (7) therapy and care (PWA, SO). Often the interpersonal qualities of the healthcare provider were seen to have a positive influence, ‘It’s like a real- hamp-hamster-wheel. And she [occupational therapist] made it different, […] a person’s nature, gives you hope’ (PWA-120-regional-mild). Table 2 provides an overview of themes with illustrative quotes.
Key touchpoints associated with positive experiences of care with example quotations
Negative touchpoints
In response to being asked to describe an experience (of stroke or aphasia care) that did not go well, seven touchpoints were identified (table 3 and online supplemental figures 2 and 3).
Overview of negative touchpoints and identified unmet needs with example quotes
Communication with healthcare providers in hospital was frequently associated with negative healthcare experiences by PWA. One PWA recalled a conversation in hospital with a medical professional, ‘all I heard [understood was], ‘You’re going to die’’ (PWA-125-metropolitan-mild). Comprehension was influenced by the timing (‘it was the middle of the night [woken at 8:30pm], because I’ve been asleep and I’ve got some aphasia’), amount of information (‘too much information in one hit, you know, could have sort of done it in dribs and drabs’ (PWA-103-metropolitan-mild)) or the type of information being communicated. Participants described challenges with wanting to ask what was happening, and not being able to, ‘no one talked to me, so I didn’t know really what was going on, and when I wanted to take up, I couldn’t talk’ (PWA-134-regional-moderate). Time pressures brought on by the mode of communication (eg, voice mail) also influenced the success of communication exchanges, ‘the time pressure gets to your brain, and you can’t think about the words’ (PWA-120-regional-mild).
Challenges coordinating care were a negative experience and source of frustration for SOs. Participants expressed frustrations with scheduling appointments and described poor communication as a barrier for the involvement of PWA in this process. Participants described stress associated with understanding how to access community-based services when transitioning home, ‘I had nothing- nothing in place. It actually- literally took weeks for him to get physio or speech’ (SO-116-regional-severe).
Access to care was a particular challenge for people with severe aphasia and people living in regional and remote areas. Participants described not being able to access care when support was required to connect to services (eg, communication burden negotiating application processes (eg, National Disability Insurance Scheme)) or for those with chronic disability requiring ongoing speech therapy. PWA described long-term social isolation and an inability to access mental health providers as a key issue. Communication disability presented a barrier to verbal expression of feelings, and this was described by PWA as their ‘biggest problem’ (PWA-087-metropolitan-moderate) and an insurmountable barrier to accessing ‘talk-based therapies’, ‘you’re only able to deal with it when you can talk about it’ (PWA-076-metropolitan-mild). One SO pointed out, ‘when you think about it she wouldn’t be able to just pick up the phone and ring lifeline [national mental health crisis call centre]’ (SO-129-remote-severe).
Exclusion from care was a key negative experience for SOs, who expressed feeling dependent on healthcare provider teams for updates on progress. This was particularly pertinent for people with severe aphasia and in regional or remote areas where available services were far from local communities, ‘he didn’t know what the hell was happening to him and I didn’t know what the hell was happening to him’ (SO-035-metropolitan-mild).
Healthcare provision: PWA described feeling cut-off when therapy or support ended and needing a way to reconnect, ‘I needed that follow up in like 18 months…. But then nothing! And then not starting again until 7 years’ (PWA-069-metropolitan-mild). Lack of consistency in healthcare providers was also associated with negative experiences by people of all aphasia severity.
Therapy and care was a negative experience for SO when there was a lack of person-centred care or a perception of insufficient effort by healthcare providers to find out ‘who’ the PWA or their family were. One participant became distraught describing when therapy and care went wrong, ‘I was just so, so upset when [names family-friend who found PWA confused on the side of the road in the early hours of the morning] brought him home [(G) starts to cry; visibly distressed] I just thought what am I gonna do!?’ (SO-116-regional-severe).
The hospital environment was described by PWA as confusing and stressful, ‘I stayed in a prison. […] because you’re, you know, locking doors and everything’ (PWA-050-metropolitan-moderate). Hospital environments were described as lacking meaningful activity or stimulation options, which meant a lack of distraction from grief associated with their stroke and their uncertainty over what life might be like moving forward. PWA expressed frustration, confusion and anger with experiences during their inpatient stay, and a lack of healthcare provider awareness of aphasia often featured in negative experiences. This extended to healthcare providers not acknowledging or recognising their consent for procedures, ‘frustrated, stress because he was taking it [blood] when I was saying ‘don’t’’ (PWA-069-metropolitan-mild).
The emotional impact of aphasia was described by PWA across all geographical areas and severities of aphasia, particularly in interactions with healthcare professionals when needs and preferences could not be expressed, ‘in one day, I became the patient and, powerless, helpless and I felt angry, and stressed’ (PWA-089-metropolitan-mild). Participants commented on having things done to them, ‘no one really spoke to me or anything, they just came in and just (pause). Changed me’ (PWA-134-regional-moderate), and described negative interactions made worse for the individual due to their aphasia: ‘nobody was telling me what’s gonna happen to me, where I went- I had to go from a different place and I thinking, ‘Oh, God!’’ (PWA-033-regional-severe).
Poor awareness of aphasia among healthcare providers was perceived to increase risk and reduce safety during inpatient stays, ‘the nursing staff. ‘A.’ They don’t have the time. ‘B.’ They don’t know enough about, aphasia’ (SO-059-metropolitan-severe). SOs expressed concern for patient safety while in hospital, ‘I think we were very lucky that she didn’t actually hurt herself while she was in there’ (SO-138-regional-severe). SOs also described that a lack of aphasia awareness reduced their access to community support services, ‘I tried three times, to get a carers allowance. I got nothing! […] was knocked-back three times, because they [national service centre] didn’t understand […] what aphasia was all about’ (SO-088-metropolitan-moderate).
Local site prioritisation and experience maps
PWA and SOs generated a total of 170 and 191 ideas for service development and improvement, respectively. Content analysis of combined stakeholder priority lists resulted in 34 (PWA) and 38 (SO) themed priorities, across the following domains: (1) therapy and service delivery; (2) support and help (to access, advocate and apply for services); (3) education and information; (4) emotional and peer support; (5) access to care and appointment scheduling; and (6) hospital environment and patient safety (SO only). Priorities by geographical remoteness and aphasia severity are available in online supplemental table 3. Experience maps are provided in figures 2 and 3.
Experience map showing frequency of negative touchpoints (corresponding percentage of those reporting) per phase on the continuum of care for people with aphasia (PWA) (n=32). Unmet needs associated with the most commonly reported touchpoint and frequency of expressed emotions at each phase are shown. Frequency of words is illustrated by word size. Icons above each touchpoint illustrate most commonly identified touchpoint according to severity of aphasia (mild, moderate or severe) and geographical remoteness (remote, regional or metropolitan). Touchpoint 6 shows frequency of reporting during acute care or inpatient rehabilitation.
Experience map showing frequency of negative touchpoints (corresponding percentage of those reporting) per phase on the continuum of care for significant others (SOs) (n=30). Unmet needs associated with the most commonly reported touchpoint and frequency of expressed emotions at each phase are shown. Frequency of words is illustrated by word size. Icons above each touchpoint illustrate the most commonly identified touchpoint according to severity of aphasia (mild, moderate or severe) and by geographical remoteness (remote, regional or metropolitan). PWA, people with aphasia.
Overview of unmet needs
Three domains of unmet needs were identified: (1) individual, (2) healthcare provider and (3) context. The interaction between touchpoints, domains of unmet needs and principles of person-centred care is available in online supplemental table 4.
Individual
Individual unmet needs were specific to the PWA and SOs. For PWA, this often related to communication support needs. Specifically, the timing, amount and type of information, as well as the mode of delivery, often presented a barrier to comprehension of critical health information and education. SOs also needed regular and often specific information and education (eg, purpose of therapy or resources needed in the home) throughout the continuum of care, to effectively support care processes and discharge planning. Family member unmet needs included not being informed or involved in care planning decisions (which often occurred outside of standard working hours). A lack of awareness of the emotional toll of aphasia complicated delivery and receipt of information for both PWA and SOs, specifically for PWA, when communication attempts are not acknowledged or effectively supported by healthcare providers during care interactions.
Healthcare provider
This domain captures unmet needs directly related to delivery of care. Reduced awareness of aphasia referred to unmet needs associated with care delivered, planned or managed by healthcare providers who had reduced awareness of aphasia or knowledge of how to support communication during service interactions. Healthcare providers lacked the experience or knowledge required to ensure the safety of PWA within hospitals (eg, ensuring there are suitable communication modes or supports available to facilitate asking for help when needed). Healthcare providers also lacked awareness of the time needed to support communication during service interactions or how to personalise care.
Context
The context domain related to the care setting. PWA face inequalities in their access care, particularly as geographical remoteness increased or severity of aphasia increased. PWA experienced reduced service options across geographically remote areas, and this led to unmet service needs, especially for PWA needing access to mental health or social work support. Service environment referred to unmet needs associated with hospital environments (eg, suitable entertainment/ward orientation materials to support patient safety, social connectedness and emotional well-being during inpatient stays), accessible transport options or service models supporting flexible service delivery options.
Discussion
This study aimed to explore experiences of post-stroke care from the perspectives of PWA and SOs, to understand their unmet service needs and priorities for improvement. Multiple areas of unmet needs across service contexts and geographical remoteness were identified. Both PWA and SOs shared positive experiences associated with therapy and care delivered in a hospital setting most often. This included providing hope (PWA/SOs) or witnessing good rapport between a PWA and their therapist (SO), and support for returning to paid employment (PWA). Additionally, PWA who recalled positive experiences once returning to the community, and reflected on the mode of service delivery (eg, group therapy, joint therapy sessions spanning different healthcare disciplines or engaging in research opportunities). Most negative experiences occurred in hospital settings and related to communication with healthcare providers. Such negative interactions were experienced across stakeholder groups, time post-onset, aphasia severity, geographical remoteness and cultural ethnicity, indicating that this is a key touchpoint for a diverse range of people who experience aphasia. Consistent with previous research,5 13 44 45 unmet needs for PWA were often associated with a lack of access to mental health services, consistent care providers, equitable or longer-term speech therapy options and poor healthcare provider awareness of ways to support communication during service interactions. Likewise, unmet needs reported by SOs were consistent with prior research and often associated with: lack of education and information,12 involvement of family in the planning of care,46 access to local service providers46 and poor healthcare provider awareness of aphasia.5 44 Our findings build on this body of knowledge, demonstrating that SOs of a PWA need information and education about all areas of care (not just aphasia) and the importance of involving them in care planning (particularly where their PWA is unable to relay information or remote areas lacking locally available services) across the continuum of care. In the current study, SOs additionally described being responsible for care without knowledge or understanding of aphasia, prognosis or treatment plans, and having to teach themselves how to provide ongoing care. A discussion of how key experiences of care contribute to the three domains of unmet needs: (1) individual, (2) healthcare provider and (3) context for PWA is presented.
Individual: understanding person-centred care specific to PWA
PWA reported inequalities accessing post-stroke care,47 exclusion from healthcare decision-making6 and adverse events during hospital stays.7 48 Research in other health fields (eg, covering a range of primary and secondary healthcare settings and disease conditions) has shown associations between improved patient experiences, clinical effectiveness and patient safety.8 In a landmark study applying patient experience to hospital-based care, the Picker Institute identified eight principles of person-centred care: (1) respect for the patient’s values, preferences and expressed needs; (2) information and education; (3) access to care; (4) emotional support to relieve fear and anxiety; (5) involvement of family and friends; (6) continuity and secure transition between healthcare settings; (7) physical comfort; (8) coordination of care.38 49 In the current study, references to all eight principles were evident across responses. However, unique elements specific to PWA were identified. For PWA, two additional elements (principles) emerged: (1) healthcare providers need to build competencies in how to support communication with PWA and (2) hospital environments need to be communicatively accessible with suitable engagement options for PWA. Healthcare provider awareness of how to support communication was central to each of the eight previously identified principles. For example, respect for the patient’s values, preferences and expressed needs was not maintained where healthcare providers did not acknowledge or support PWA’s ability to express needs (eg, ‘He didn’t know how to even press the button- couldn’t press the button [to call for help] (SO-059)), their rehabilitation goals or values (eg, ‘nobody was telling me what’s gonna happen to me, where I went- I had to go from a different place and I thinking, ‘Oh, God!’’ (PWA-033)) or treatment preferences (including when consent is not supported) (eg, ‘he was taking it [blood] when I was saying ‘don’t’’ (PWA-069)). The emotional distress and traumatic effect on the individual from not being able to express themselves have been highlighted elsewhere.50 Indeed, prior research has shown that communicating with a trained communication partner can increase social participation and reduce risk of emotional distress for PWA.51 The second element relating somewhat to ‘physical comfort’38 49 is for hospital environments to be safe, stimulating and engaging for PWA (see below).
Healthcare provider
PWA reported feeling afraid, frustrated, angry or misunderstood while attempting to communicate with those providing their care. This is concerning, given that PWA are known to experience greater emotional distress, develop depression, or suffer loneliness and social isolation,3 52 and also experience reduced access to mental health services.53 Furthermore, PWA reported being ignored, not spoken to or having things done to them (in-hospital). These findings are comparable with previous research reporting healthcare providers find communicating with PWA challenging and avoid communication attempts.5 Reduced ability to communicate with or seek assistance from healthcare providers when needed potentially poses substantial risk for PWA, and may help to explain why they experience more complications during stroke admissions than other stroke survivors.48 Internationally, training of healthcare providers in supported conversation techniques54 and aphasia awareness55 has been recommended as best practice.54 56 The standardisation and implementation of communication partner training for all healthcare providers,51 flexible service delivery options and improved communication between staff (to support greater consistency in care) may help to ensure awareness of effective communication strategies that reduce risk and optimise access to timely care.
Context: hospital environments for PWA
The importance of stimulating hospital environments and their influence on stroke recovery, particularly early stroke recovery, has previously been reported for all stroke survivors.57 However, PWA have unique environmental needs and reported limited available stimulation opportunities outside of planned care. Given the increased risk of emotional distress3 52 faced by PWA, the high proportion of time patients spend alone and inactive on stroke units,58 and the toll boredom can take on engaging in therapy opportunities,57 further exploration of suitable and engaging hospital environments specific to PWA is needed. In the current study, participants described entertainment options (eg, television programming/system navigation required complex language) as unsuitable or overstimulating and suggested simple music options or available (and quiet) green spaces. Recent studies in Australia and the UK have explored the feasibility of enriching hospital environments59 and alternative ways to improve well-being for PWA.60
Implications for clinicians and policymakers
Limitations in health provider–patient communication could be addressed through implementation of existing supported communication partner training programmes, which have been shown to be effective.51 This could also improve access to mental health services; however, more immediate impacts could be returned through implementation of speech pathology-led stepped psychological care.61 62 Access to training in supported communication with PWA has been developed for a variety of cultural contexts, often with input from speech pathologists, PWA, SOs and neurologists.51 The implementation of small, low-cost options like the systematic use of communication boards, suitable mobile music listening devices,63 peer befriending models60 or hospital-based volunteers able to support participation in everyday activities (eg, walks outside) warrants investigation.
Strengths and limitations
A strength of this study was the diversity of participants achieved through maximum variation sampling. Participants across the continuum of care, geographical remoteness areas and a range of service contexts were represented. The inclusion of populations often excluded from aphasia research (eg, people with severe aphasia, Aboriginal and/or Torres Strait Islander Peoples, and linguistically diverse people) was supported through the development of bespoke resources and support. Data were collected during the COVID-19 pandemic and it is acknowledged that this was a period where care may have differed from that typically provided. Additional limitations include the lack of observation of regional and remote contexts, which may have influenced interpretations of site contexts, and the lack of the wider stroke healthcare team, policymakers and PWA, resulting from an aetiology other than stroke. Aphasia-related impairments, and lack of access or familiarisation with communicating online may have discouraged some people from being involved, though research suggests there may be benefits to engaging online with people with communication impairments.64–66
Prompted by the lack of definitive explorations of need across service contexts (specific to aphasia care), this comprehensive examination adds to our understanding of post-stroke aphasia experiences and unmet care needs. Future aphasia service development should ensure these unmet needs are addressed in new policy and service-model designs, and further research consider the experiences and unmet needs of speech pathologists and those with aphasia caused by an aetiology other than stroke. Further research should also explore the perspectives and experiences of healthcare providers other than speech pathologists. The next stage of research will explore speech pathologists’ experiences, unmet needs and service priorities.
Data availability statement
Data are available upon reasonable request. Raw data are not publicly available to protect participant privacy.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and ethical approvals were granted by the Royal Brisbane and Women’s Hospital (HREC/2020/QRBW/61368) and the University of Queensland (2020000965) Human Research Ethics Committees. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We would like to acknowledge each of the people living with aphasia and their significant others (including the speech pathologists who supported recruitment) who generously contributed their time to this research. We would also like to thank members of the consumer advisory committee for their valuable input, Mr Geoffrey Binge for his expert guidance on respectfully engaging Aboriginal and/or Torres Strait Islander Peoples in this research, the speech pathology management staff from each participating site, and Kimberly Garden, Margot Sexton, and Emma Caird from the Queensland Aphasia Research Centre.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
X @AnemaatLisa, @VictoriaJPalmer, @Aphasia_UQ, @SarahJWallace
Contributors LA, lead author and guarantor of the study, was responsible for the initial draft of this manuscript, research design, all data collection, analysis and interpretation. SJW, DAC and VJP provided regular supervision throughout, and contributed to research design, data analysis, interpretation, critical review and editing revisions of the manuscript. BB contributed to data collection, analysis and critical review and editing of manuscript revisions. Members of the consumer advisory committee, authors KM (person with aphasia), KD (person with aphasia), JD (family member of a person with aphasia), BA (person with aphasia), GB (cultural capability officer for the Royal Brisbane and Women’s Hospital, and a proud Kamilaroi man from North West New South Wales, Australia) and PM (family member of a person with aphasia) provided input on methods, research design, recruitment processes, analysis and dissemination. All authors have read and approved the final version.
Funding This work was supported by the University of Queensland Aphasia Rehabilitation Research Fund (2018–2023) and a New Researcher grant awarded by Speech Pathology Australia (2020). SJJW was supported by a National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant (APP1175821) and LA by the University of Queensland-Research Training Program Scholarship (QARC).
Disclaimer The lead author affirms the manuscript is an honest, accurate and transparent account of the study being reported; no important aspects have been omitted; and that any discrepancies from the study as originally planned have been explained.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.