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

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

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).

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.

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 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.

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.

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.