“Coming home was a disaster, I didn’t know what was going to happen”: a qualitative study of survivors’ and family members’ experiences of navigating care post-stroke

Abstract

Purpose

Understanding navigational barriers and facilitators has the potential to advance equitable stroke care delivery. The aim of this study was to explore, using a qualitative study, the experiences of stroke survivors and their families as they journey through the stroke care system, both before and during the COVID-19 pandemic.

Methods

In-depth semi-structured interviews were conducted with 18 stroke survivors and 12 family members during 2021 and 2022. Participants were recruited through voluntary organisations, social media, and stroke support groups. Data analysis followed a systematic process guided by the framework method with steps including familiarisation, coding, framework development, and charting and interpretation.

Results

The experiences of navigating stroke care were particularly challenging following discharge from hospital into the community. Barriers to stroke care continuity included insufficient appropriate services and information, unsatisfactory relationships with healthcare professionals and distressed mental health. There were particular navigational challenges for survivors with aphasia. Facilitators to effective navigation included having prior knowledge of the health system, harnessing support for care co-ordination, and being persistent.

Conclusion

Greater support for patient navigation, and person-centred referral pathways, particularly during times of increased pressure on the system, have the potential to improve access to services and wellbeing among stroke survivors.

Implications for rehabilitation

• Interactions between practitioners and stroke survivors need to be simple, empathetic, and transparent, using communication tools when needed for older stroke survivors or those with a communication or cognitive disability

• Navigation of the care system is a significant challenge and source of emotional distress for stroke survivors and their families, likely leading to foregone care and inequity in access to services. This indicates a need for both clearer, more standard stroke care pathways that are easier to navigate, and evidence-based patient navigation support programmes.

• The development of navigational interventions and stroke care pathways would benefit from co-design with motivated and knowledgeable stroke survivors.

• Taking advantage of the wealth of lived experience, and stroke survivors’ capacity and passion for advocacy, has the potential to empower the wider stroke community.

Keywords:

• Stroke
• navigation
• rehabilitation
• qualitative research
• framework analysis

Introduction

Stroke is one of the world’s leading causes of mortality and severe disability, accounting for over 15 million deaths in 2015 [1]. In Ireland in 2020, approximately 5800 adult patients were admitted to hospitals nationwide with either ischaemic or haemorrhagic stroke [2]. Most stroke survivors are discharged from hospital with some level of disability, with over half of stroke patients discharged to home (52%); 13% to an inpatient rehabilitation facility; and 6% of stroke patients were discharged to a long-term care facility [2]. However, community-based services are not currently meeting the needs of stroke survivors, and are fragmented, inequitable and under-resourced [3–5]. A 2013 national survey of stroke survivors in Ireland (n = 196) found that 77% had emotional difficulties, with 53% reporting that their emotional needs were unmet. Furthermore, adjustment to living at home post-discharge from hospital is often managed in isolation, with 77% of stroke survivors reporting “rare” or “no support” from a co-ordinator following their transfer to community care [4].

The post-stroke care pathway has been characterised as a confusing and overcomplicated series of transitions [6]. A meta-ethnography of 51 studies in the UK found that stroke survivors and carers felt marginalised by poor care continuity, gaps in services, limitations in training and respite for carers, and an overall lack of individualised care [7]. Navigating this continuum of care can be a considerable challenge for both patients and their families, who often have a myriad of other responsibilities to contend with that can add to feelings of stress and exhaustion [8].

The concept of patient navigation originated in the United States [9,10], and has recently been applied to stroke care contexts in Europe [11,12]. It broadly relates to the processes by which people and their family members or carers move into and through different parts of the healthcare system, to gain access to and use services from which they can benefit [9,10]. These dynamic processes are shaped by structural circumstances and conditions and include how “individuals respond to healthcare needs, pursue opportunities, and manage constraints” [12, p.225]. Ryvicker [10], in a behavioural-ecological conceptual framework argues that a combination of individual factors, such as age, education and health, in conjunction with a wide range of environmental factors including the built environment, and social infrastructures, interact and contribute to people’s navigational experiences and behaviours.

Previous qualitative studies provide some evidence on factors that can help and hinder navigation of care post-stroke. Two key factors are information provision for stroke survivors and carers, and, good relationships with healthcare providers [7,13,14]. Informational needs are diverse and can change over the care trajectory [13,15], while accessing the right information at the right time can be very challenging for stroke survivors and their families, and a source of stress and anxiety [16]. Stroke survivors and their families often resort to self-educating online when there is insufficient informational provision [17]. Poor information sharing across providers can also make it difficult to meet the needs of stroke survivors, especially post-discharge [3,18].

Good relationships and effective interactions between patients and Health Care Professionals (HCPs) are also an important facilitator of navigation. Stroke survivors and carers value being treated with respect and empathy [19] and appreciate when healthcare staff are inclusive of their planning needs, with an emphasis on joint decision-making and building mutual trust [7,20,21]. Good continuity in case management has also been found to be key in improving the transition to home [14]. In addition to factors related to service providers, factors related to the individual also play a role in navigation. Self-awareness and self-advocacy were found to be important protective factors, particularly for stroke survivors, in mitigating against severe strain [6].

The COVID-19 pandemic exacerbated the challenges already present within the stroke and broader health care systems as stroke beds and specialist stroke HCPs were re-allocated to provide intensive care for COVID-19 patients [22]. The Irish national audit of stroke [2] found that there was an increase in stroke cases during COVID-19, and there is evidence that patients were discharged earlier from hospital, with reduced individualised care, and curtailed rehabilitation relative to pre-pandemic times [2,23]. Strategies attempting to mitigate against the impact of reduced capacity for therapy included increasing use of telemedicine for both in-hospital and post-hospital stroke care such as physiotherapy, occupational therapy, and speech and language therapy [24,25]. The imposed COVID-19 restrictions and policies were found to negatively impact on family caregivers because of reduced in-patient visitation and carer training, poor communication between family members and HCPs, lack of preparedness for discharge, and fear of a stroke recurrence [26].

Previous qualitative research has focused on stroke survivors’ and their caregivers’ lived experience of different aspects of the stroke care system [7,16,19,27–33]. However, no qualitative study to date has focused specifically on stroke survivor and family experiences of navigating the care continuum. Researchers in the area of patient navigation have emphasised that more qualitative research is needed from within different contexts in order to generate a more in-depth understanding of the issue [9,10].

Within the Irish context, there is a particular dearth of in-depth explorations of people’s lived experience of moving through the care continuum following a traumatic stroke event, including their experiences of transitioning between different phases of care and accessing necessary, and appropriate, supports and services. By giving voice to people with lived experience, this research aims to increase awareness of how people negotiate the considerable challenges of healthcare access for themselves or their loved ones. To support stroke survivors with cognitive or communication difficulties, flexible and inclusive data collection methods were used. In addition, it was important to understand how stroke survivors and family members experienced care navigation during the COVID-19 pandemic, which had a widespread and dramatic impact on stroke care delivery and access [22].

The aim of this study was to examine stroke survivors’ and family members’ experiences of moving through the stroke care continuum using interview data. The specific research objectives were:

1. to describe stroke survivors’ and family members’ experiences of navigating and accessing stroke care, including experiences during the COVID-19 pandemic;

2. to identify the navigational barriers and facilitators to stroke care continuity.

Methods

This was a qualitative study, based on the conduct of in-depth semi-structured interviews with stroke survivors and their family members, followed by detailed analysis of interview transcripts. The interviews were part of a broader study that aimed to identify stakeholder priorities for the development of stroke services in Ireland [34]. To enhance rigour and trustworthiness this analysis followed the guidelines outlined in the Consolidated Criteria for Reporting Qualitative Research (COREQ) [35], and the 32-item checklist of COREQ was used and reported (see supplementary material Table 1). Ethical approval for the research was granted by the RCSI’s Research Ethics Committee (REC) (approval number 202101017). Supplementary material for the study is available here. https://osf.io/4s7et/?view_only=86dda45e85c748389a25de80fa2bb7c8

Table 1. Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist.

No Item	Guide questions/description	Page No
Domain 1: Research team and reflexivity
Personal Characteristics
1. Interviewer/facilitator	Which author/s conducted the interviews?	8
2. Credentials	What were the researcher’s credentials?	8
3. Occupation	What was their occupation at the time of the study?	8
4. Gender	Was the researcher male or female?	Female
5. Experience and training	What experience or training did the researcher have?	8
Relationship with participants
6. Relationship established	Was a relationship established prior to study commencement?	7
7. Participant knowledge of the interviewer	What did the participants know about the researcher?	7
8. Interviewer characteristics	What characteristics were reported about the interviewer?	7
Domain 2: study design
Theoretical framework
9. Methodological orientation Participant selection	What methodological orientation was stated to underpin the study?	9
10. Sampling	How were participants selected?	7
11. Method of approach	How were participants approached?	7
12. Sample size	How many participants were in the study?	11
13. Non-participationSetting	How many people refused to participate or dropped out? Why?	8
14. Setting of data collection	Where was the data collected?	Dublin
15. Presence of non-participants	Was anyone else present besides the participants and researchers?	8
16. Description of sample	What are the important characteristics of the sample?	7
Data collection
17. Interview guide	Were questions, prompts, guides provided by the authors?	7
18. Repeat interviews	Were repeat interviews carried out? If yes, how many?	No
19. Audio/visual recording	Did the research use audio or visual recording to collect the data?	Audio
20. Field notes	Were field notes made during and/or after the interview?	8
21. Duration	What was the duration of the interviews or focus group?	8
22. Data saturation	Was data saturation discussed?	8
23. Transcripts returned	Were transcripts returned to participants for comment/correction?	9
Domain 3: analysis and findings
Data analysis
24. Number of data coders	How many data coders coded the data?	9
25. Description of the coding tree	Did authors provide a description of the coding tree?	10
26. Derivation of themes	Were themes identified in advance or derived from the data?	10
27. Software	What software, if applicable, was used to manage the data?	10
28. Participant checkingReporting	Did participants provide feedback on the findings?	No
29. Quotations presented	Were participant quotations presented to illustrate the themes?	Yes
30. Data and findings consistent	Was there consistency between the data presented and the findings?	Yes
31. Clarity of major themes	Were major themes clearly presented in the findings?	10
32. Clarity of minor themes	Is there a description of diverse cases or discussion of minor themes?	Yes

Retrieved from: Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007. Volume 19, Number 6: pp. 349 – 357.

Participants

Using diverse purposive sampling of “information-rich cases” [36, p.169], participants were recruited through Irish stroke support groups, social media, stroke care settings, and professional organisations. In accordance with the study’s inclusion criteria, stroke survivor participants: 1) had a diagnosis of stroke more than 6 months prior to participation in the research; 2) were aged 18 years and over and resident in the Republic of Ireland; 3) had to be able to converse in and understand English; and 4) had to be capable of providing informed consent. The family member had to be a person who cares for someone who met the above criteria for stroke survivor participation and family members also had to meet the above socio-demographic criteria.

Data collection

At least one week before interviews were conducted, potential participants received a patient information leaflet and consent form. Aphasia-friendly simplified versions with pictures were also made available. Sample participant information leaflets and topic guides are available in supplementary material here: https://osf.io/4s7et/?view_only=86dda45e85c748389a25de80fa2bb7c8.

Participants were assumed to have capacity to consent and gatekeeper stroke group co-ordinators were consulted if necessary. The consent process was completed by phone, and thirty signed forms were returned by post. Participants were informed of how their data would be processed at different stages of the research, and were given the opportunity to review and amend transcripts. Participants were informed that they could withdraw consent at any stage without any negative repercussions for their stroke care. One potential participant declined to participate following review of the participation information leaflet due to lack of interest. None of the participants who signed and returned a consent form withdrew from the study. Twenty-eight interviews, including two conducted with stroke survivor/family member dyads (total of 30 participants), were conducted by telephone or using Microsoft Teams software. This was consistent with the target recruitment of 12–15 interviews for each of the two groups. The data collection phase was completed by January 2022. The decision to cease recruitment was made in consultation with the study steering group on the basis of data saturation along with feasibility and time constraints. Data saturation was considered at two levels – code saturation (no additional issues are identified) but also meaning saturation (no further dimensions, nuances or insights of issues are identified) [37].

Flexible semi-structured interviews were loosely guided by Donabedian’s three aspects of healthcare quality – structure, process and outcome [38]. A study steering group consisting of a stroke survivor representative, and professionals working in stroke healthcare, research and advocacy also reviewed the topic guide in advance. Participants were asked to describe their experiences in their own words and important issues were explored in-depth using open-ended probing and clarifying interview techniques [39].

The interviews were conducted by ES, an experienced health researcher with training in qualitative data collection methods. Interviews lasted between 30 and 130 min, with an average duration of 69 min, and were audio-recorded with the permission of participants and subsequently transcribed verbatim. Field notes were prepared following the conduct of each interview and documented participant communication difficulties (where relevant), any technical problems experienced, short summaries of the interviews and any additional information given by participants. Participants were given the option to review and comment on the interview transcript, with 16/30 reviewing, and 1/16 providing some minor clarifications. Interview transcripts were pseudonymised.

Flexible accommodations were made during data collection process to support the participation of stroke survivors with cognitive and communication difficulties. These accommodations were tailored to the individual, and included providing the topic guide in advance, using the MS Teams chat function to augment spoken communication, and dividing interviews over multiple occasions. The interviewer (ES) also received coaching from a speech and language expert in best practice communication with people with aphasia.

Data analysis

The analysis followed a systematic process of exploring and analysing the interview data, guided by the Framework Method, which was designed for use in applied research contexts [40,41]. The Framework Method provides a step-by-step approach, grounded in participants accounts, to identify relationships and patterns in qualitative data. The steps include familiarisation, coding, framework development, charting and interpretation, and theme development. Open coding was used during the familiarisation stage and involved using the five earliest available transcripts, three from stroke survivors and two from family members. Two researchers (ES, KF) independently coded the data using line-by-line open coding and indexing text, creating tentative top-level categories based on meaning and the overall context of each interview. This process included a transparent and systematic method of taking notes and adding annotations, which were reflexively discussed and reviewed during meetings to reach a degree of consensus on the evolving framework [41]. Intercoder reliability analyses were employed to encourage a clear and collaborative analytic process [42,43]. The initial framework included a top-level “Navigation” category guided by Ryvicker and informed by Sofaer [9,10], which included provider categories such as “Equitable Access”, “Healthcare environment”, “Communication”, “Care continuity”, and survivor/family member categories such as “Decision-making”, “Information seeking”, “Dealing with co-morbidity” and “Resources” Other top-level categories were “Phases of care”, “Quality of care”, “Social support” and “Impact of COVID-19”. The code book (Table 3) and coding frame (Table 4) are available as supplementary tables here: https://osf.io/4s7et/?view_only=86dda45e85c748389a25de80fa2bb7c8.

Table 3. Code book.

Navigation Behaviours
Healthcare Practitioners Communication quality Care continuity Information exchange Managing transitions – including discharge Care co-ordination	Survivor/Family Member Decision-making Information seeking Securing services
Navigational Facilitators
Provider Equitable access  Use of technology  Transport provision  Standardized care  Staff training  Financial supports Relationships build on trust Care co-ordinators/advocates Solutions proposed  Transparency  Standardization  Accessibility	Survivor/Family Member Economic resources  Health insurance  Medical card Healthcare literacy/knowledge Social resources  Advocate  Connection in healthcare  Carer training Social support  Family support  Peer support Self-motivation
Navigational Barriers
Provider Inequitable access  Geographic location  Poor transport links  Equitability criteria  Fair deal scheme criteria Pressure on the system  Waiting lists  Under staffing Stroke perceptions Restrictive measure due to COVID-19  Halted community and inpatient services  GPs closed  Inpatient visitor restrictions	Survivor/Family Member Age Dealing with co-morbidity Burden of paperwork Psychopathology  Mood  Fatigue  Loneliness Cognitive impairment Financial hardship Risk of contracting COVID-19
Cross-cutting Categories
Phases of care Quality of care

Table 4. Coding frame for final thematic categories.

Categories	Sub-categories	Stroke Survivor	Family Member
(Dis)continuity and consistency of care	Care continuity Inequitable access Pressure on the system Information sharing between providers Impact of Covid-19	“So more people surviving the acute episode of care and then less and less care provided to them afterwards, for what they actually need to get home to live in their own communities.” [Berni]	“he was actually sent to [community hospital] for some rehab but unfortunately Covid hit and so he was sent home” [Martha]
Running on threadbare – The emotional impact of navigation	Battle for services Burden of paperwork Mood/fatigue/loneliness	“There was no follow up and I met with sort of, I find it hard to just make an effort to do these things.” [Lucy] “	“You can spend a lot of energy fighting and it’s really, really, it sucks a lot of emotional energy out of it that negativity” [Chloe]
Responsive relationships to guide navigation	Communication quality Relations built on trust Care co-ordinators/advocates	And to feel listened to and do you know what, it was like as if I was his only patient” [Nuala]	"The cardiac department and the stroke department did not speak to each other literally.” [Sally]
Taking control and steering the way	Healthcare literacy/ knowledge Social resources Survivor’s self-motivation	“And I also felt we were empowering ourselves too, to take responsibility for, for ourselves as well” [Sean]	Yeah the information definitely… like you were literally stalking people to try and get some” [Dora]

The remaining 23 interviews were deductively coded using these over-arching categories, newly identified inductive codes and sub-categories were also added to the working framework until no new codes emerged. The analysis was conducted using NVivo 12 [44]. The indexing and charting stages were conducted through immersion in the full data set of codes and categories and involved clustering codes, and restructuring and renaming categories in an iterative process [41]. During the final interpretive stage the first author (KF) moved between the charts, tables, transcripts, and memos, systematically comparing across the individual data and participant group data, in order to make sense of developing patterns and themes [45], while allowing for further checking for interrelated themes and accounting for negative instances to arrive at a rich description of the experiences and perspectives of stroke survivors and family members [39]. The final structure addressed four emergent and distinctive issues: (Dis)continuity and consistency of care; Running on threadbare – the emotional impact of navigation; Responsive relationships to guide navigation; and Taking control and steering the way.

Results

The participant sample

The study’s 18 stroke survivors included 8 female and 10 males (age range 47–80). The 12 family member participants members, included 11 females and 1 male (age range 34–76), one of whom is a carer for a stroke survivor participant. Nine older stroke survivors and four older family carers, (aged over 65), participated. Thirteen stroke survivors indicated that they had a degree of communication or cognitive impairment. Seven of these participants were aged under 65 years. One family carer informed that her husband had dementia, there were four stroke survivors with aphasia, and eight stroke survivors reported having mild cognitive difficulties. Hearing or eyesight loss were reported by three stroke survivors. All geographical areas of Ireland were represented (see Table 2), and two of the interviews were conducted with couples. The study’s stroke survivors had experienced stroke events that ranged from six months to 18 years prior to taking part in the study. Access to rehabilitation post-discharge was very varied, depending on need and availability, and ranged from participants with intensive inpatient rehabilitation followed by access to community rehabilitation, to those who had either inpatient or community rehabilitation only, to a small number who had limited access to any rehabilitation post-discharge. Approximately half had been transferred to an inpatient rehabilitation setting following their discharge from hospital and a majority had accessed community-based supports such as physiotherapy, speech and language therapy or occupational therapy. Seventeen of the participants had experienced a stroke event or were rehabilitating in inpatient care during the COVID-19 pandemic. Table 2 presents the participants’ characteristics in more detail. Participants were living at home at the time of the interview, except for one male survivor who was residing in a long-term care facility. To protect people’s identities, pseudonyms were assigned to all participants.

Table 2. Participant characteristics.

Interviewee	Relationship with Stroke Survivor	Age Group Family Member	Sex Family Member	Age Group Stroke Survivor	Sex Stroke Survivor	Geographic Area in Ireland	Comm Cog*	Interview Type	Type of Stroke	Year of Stroke
Family Members
Sally	Wife	70-74	F	65–69	M	South Dublin	No	Phone	Haemorrhagic	2020
Amy	Daughter	50-59	F	79–79	F	South Dublin	No	MS Teams	Ischaemic	2019
Chloe	Daughter	<50	F	80–89	F	North West	No	MS Teams	Ischaemic	2020
Martha	Wife	75-79	F	75–79	M	North East	No	Phone	Haemorrhagic	2020
Susan	Partner	65-69	F	60–64	M	West	No	Phone	Unknown	2020
Breda	Wife	70-74	F	75–79	M	West	Yes	Phone	Unknown	2016
Noreen	Wife	60-64	F	70–74	M	South Dublin	No	Phone	Unknown	2003
Freya	Sister	50-59	F	50–59	M	South Dublin	No	MS Teams	Ischaemic	2019
Ciara	Wife	60-64	F	65–69	M	South West	No	MS Teams	Ischaemic	2020
Dora	Wife	60-64	F	65–69	M	South West	No	Phone	Haemorrhagic	2018
Stroke Survivors
Janet	NA	NA	NA	65–69	F	West Dublin	Yes	Phone	Haemorrhagic	2011
Séan	NA	NA	NA	60–64	M	North West	Yes	Phone	Unknown	2015
Tracey	NA	NA	NA	65–69	F	South East	No	MS Teams	Ischaemic	2020
Nuala	NA	NA	NA	<50	F	West	Yes	MS Teams	Ischaemic	2015
George	NA	NA	NA	50–59	M	West	No	Phone	Ischaemic	2020
Colm	NA	NA	NA	50–59	M	North East	No	Phone	Haemorrhagic	2020
Berni	NA	80-89	M	80–89	F	North West	Yes	Phone	Haemorrhagic	2020
Patricia	NA	NA	NA	65–69	F	West	No	Phone	Ischaemic	2013
Steve	NA	NA	NA	50–59	M	West	Yes	Phone	Ischaemic	2010
Anne	NA	NA	NA	75–79	F	North Dublin	No	Phone	Ischaemic	2020
Lucy	NA	NA	NA	80–89	F	South West	Yes	Phone	Haemorrhagic	2021
Kenneth	NA	NA	NA	<50	M	North East	Yes	MS Teams	Ischaemic	2019
Ray	NA	NA	NA	50–59	M	South East	Yes	MS Teams	Unknown	2019
Eamon	NA	NA	NA	75–79	M	South West	Yes	Phone	Haemorrhagic	2019
Lorcan	NA	NA	NA	75–79	M	South West	Yes	Phone	Haemorrhagic	2019
Harry	NA	NA	NA	70–74	M	West	No	Phone	Haemorrhagic	2018
Couples
Deirdre & Liam**	Wife	60-64	F	60–64	M	West Dublin	Yes	Phone	Ischaemic	2018
Denise** & Jim	Husband	NA	M	75–79	F	Midlands	Yes	Phone	Unknown	2020

NA = Not applicable; *Comm Cog = Participant has communication or cognitive challenges **Couple interview - stroke survivor.

The findings demonstrate that stroke survivors’ and family members’ experienced considerable deficits in supports and services, particularly while in the care of the community. Navigation challenges were found to have a significant emotional impact on stroke survivors and family members alike. Some participants thought that good relationships with HCPs secured supports and facilitated an easier journey through the demanding stroke healthcare system. There was also evidence that some highly motivated participants drew on personal resources such as self-learning, determination, and self-advocacy. These issues are described, and illustrated using quotations from stroke survivors and family carers, in the following sections.

(Dis)continuity and consistency of care

Discontinuity of care was a notable theme permeating participants’ accounts. This discontinuity was particularly evident in the sudden drop-off in service access following a patient’s discharge from inpatient care, and in a lack of consistency in services offered across individuals and geographical areas. Participants’ experiences of discontinuity were exacerbated during the COVID-19 pandemic.

Fourteen stroke survivors and ten family members discussed how they were impacted by an absence of continuity in their care following discharge. A distinct lack of care continuity was described by these participants whose year of stroke ranged from 2003 to 2021. One family carer Noreen, whose husband had a stroke 18 years ago reported that they have received very little support. Séan, who had a stroke in 2015, considered that this was a common occurrence: “I started to realize then that there’s a lot of people out there, they get out of hospital and they kind of fall over the cliff and are forgotten about”. According to many stroke survivors, this experience after discharge was particularly unnerving and contrasted starkly with the excellent “really intensive rehab” and healthcare that they had become accustomed to while in hospital. As Tracey, an older stroke survivor, explained, “once they meet the requirement of being able to be discharged home, it all falls away”. One stroke survivor [Lucy] and one family carer [Sally] experienced a good transition home with an early supported discharge (ESD), involving early discharge from hospital and a short period of intense in-home support. However, older participant Lucy nonetheless experienced a lack of follow-up from the ESD team subsequent to discharge, with the burden placed on her to co-ordinate her own care.

“… the community rehab, there hasn’t really been any; they did give me a comprehensive list of phone numbers of people to get in touch with, you know … There was no follow up and I met with sort of, I find it hard to just make an effort to do these things.” [Lucy, stroke survivor with aphasia]

A small number of participants were satisfied with the level of rehabilitation therapy they received. However, participants also described multiple barriers and sources of inequity that prevented them from accessing adequate rehabilitation post-discharge. Many participants found themselves on long waiting lists for community therapy or for a bed in the national rehabilitation hospital. For some stroke survivors the route to adequate services was to employ therapists privately, however, eight participants could not afford this option. Restrictive age criteria was also frequently discussed as a reason for the difficulties they experienced in accessing care. Carers believed that stroke survivors who were just over the age of 65 would have benefitted from more rehabilitation services than they were eligible for, having just missed the age cut off criteria (under 65 years) for some services.

Participants from both rural and city locations frequently asserted that a “post code lottery” played a role in their care. Those living further away from acute stroke hospitals, where more stroke services are offered, felt that they were geographically disadvantaged. Stroke survivors who lived some distance from community-based supports or services often experienced difficulties in accessing and attending available services and often relied on friends and family members for transport. Over half of stroke survivors found it difficult to return to driving themselves.

Deficits in care continuity and information sharing between HCPs across different healthcare settings was experienced during the transition out of the acute system by a small number participants. In particular, those caring for stroke survivors with co-morbidities believed that there was a lack of interdisciplinary “joined up thinking”, and they suggested that specialists should be more integrated or “closely linked” in order to inform more thorough treatment decisions. There was a sense that there tended to be nobody who had an overall view of the stroke survivor’s care - “I think there’s no one out pulling all those threads together” [Ciara, family carer], with the burden of co-ordination placed on stroke survivors themselves or their family members. There were some examples of better co-ordination across providers. Martha, for example, experienced significant challenges with accessing and navigating the services required to meet her husband’s complex post-stroke needs. However, he was eventually allocated to an integrated care team, with excellent multi-disciplinary communication and co-ordination: “They had all that information … I’m like overloaded with their efficiency”.

The challenges resulting from being hurriedly discharged from in-patient care during the COVID-19 pandemic period was specifically discussed by many participants, as one family carer, Martha, recounted: “And they said, you know, we’re discharging as many people or patients as we can and I feel then like everything kind of stopped for him, so I’m blaming it all on COVID. Because we were kind of let loose and nothing happened”. A distinct lack of care continuity was experienced by all participants who were discharged during the COVID-19 pandemic. The suspended services discussed included home care supports, physiotherapy, social care, peer groups and voluntary organisations. Several participants talked about the sudden closures in primary care, in particular recalling that there was no continuity or co-ordination available from their GPs, who were burdened by COVID-19 specific care.

Some stroke survivors described avoiding healthcare settings due to their fear of an increased risk of contracting COVID-19. Breda, an older family carer, reported that the imposed pandemic restrictions on household visitors had negatively impacted the level of support they could avail of when her husband recovered at home following a stroke: “I can’t just bring somebody, you can’t come in, nobody can go into anyone’s house now because we are afraid of the virus”. Breda was instead given a list of exercises from a physiotherapist to do with her husband which she couldn’t manage by herself.

Efforts were made by some primary care therapists to deliver services via video conferencing but there were conflicting perspectives on the success of this format. Some participants felt that remote delivery was “really good”, while it was individually challenging for those stroke survivors, like Ray, with communication or speech difficulties: “I was meant to do a session every two weeks. But it hasn’t worked”.

Running on threadbare – the emotional impact of navigation

Many stroke survivors and family carers found that the experience of navigating the system to secure services for themselves or their loved one was a significant source of mental stress and anxiety. Navigation experiences were frequently described in terms of doing battle, with participants frequently reporting that they had to “fight”, “shout”, “push” or “battle” for treatments, benefits, or information. Advocating for supports was the norm among participants and involved making countless phone calls, sending emails, form filling, and completing onerous paperwork while continuously dealing with “too much red tape”.

Carers often expressed that the stresses associated with “fighting” for their family members’ unmet service needs were frustrating, overwhelming and upsetting, especially when feeling “exhausted” or “running on threadbare”. One stroke survivor, Colm, talked about how he noticed the considerable strain placed on family members, particularly his wife: “I think the poor families are the lost soldiers in this story. It’s very hard on them, like their life is turned upside down”. Some carers found that, after a time, they “gave up” because their desperate pleas were “falling on deaf ears” [Chloe, family member].

Stroke survivors also found themselves feeling upset with a care system within which they commonly experienced themselves in “a full-time battle to make sure that you get what you need” [George, stroke survivor]. Communication and the information provided around the time of discharge was often deemed to be unsatisfactory, adding to participants’ stress during this important transition. As one stroke survivor, Nuala, explained: “Coming home was a disaster, I didn’t know what was going to happen. I didn’t know when my next visit was, and I was terrified the whole time”. Most of the stroke survivors reported that they were also coping with personal challenges such as depression, fatigue, loss of confidence, loneliness, anxiety or guilt, which negatively impacted their ability to locate and access supports.

“I used to be a very kind of pro-active person. Now, I have to struggle with the idea of “Ah sure why would I bother? Because I could die in an hour”. [Tracey, stroke survivor]

Feeling overwhelmed by the demands of sourcing supports while doing the difficult work of rehabilitation was another common survivor experience, which sometimes then led stroke survivors to decline therapies. Older participants, in particular, found that their ability to persevere in the pursuit of needed supports declined over time. Lucy, an older stroke survivor who was living with aphasia and had no access to follow-up care or home care, described how her situation had deteriorated: “I’m doing all my own care of the house but, again, I just run out of steam. Partly age-related, I didn’t have that problem before, I could cope alright. I can’t really cope now”. Many stroke survivors were managing health complications due to co-morbidity and living with the added strain of securing additional therapies or health services, as Harry, an older male participant who lived in a nursing care setting and declined to take up counselling articulated: “I’m kind of just recovering from the stroke. And then I’m told I’ve bowel cancer. So, yeah, so it was one thing on top of the other, you know”. Based on the study’s accounts, the stroke care pathway might be reasonably described as stressful and as diminishing people’s energy, motivation and ability to recover.

Responsive relationships to guide navigation

The analysis revealed that clear and honest intercommunications, and relationships of trust with professionals, can potentially facilitate a less complicated stroke care journey for stroke survivors and their families. A general pattern of satisfaction was evident in participants’ accounts of some aspects of their interaction experiences within the acute stroke and inpatient systems. Many stroke survivors and family members were keen to emphasise that they had an “excellent” relationships with a wide range of practitioners who were frequently said to be available “24/7” and to have provided clear and honest information and advice.

Two carers related the positive experience of being “sat down” with a staff member to explain the stroke, and what to expect. Amy, for example, whose mother had been living with a serious health condition before her stroke, was very anxious when her mother was recovering in the acute stroke ward in hospital and expressed her strong appreciation for the responsiveness of a social worker: “She took me into a room four days post-stroke and sat down and had a chat with me all about, you know, the impact … and I found that to be one of the most beneficial things of the entire process that we’ve gone through”. Freya, a sister of a survivor, mentioned her appreciation of the hospital team providing her with a “roadmap of what would happen”. Two other participants (one stroke survivor and one carer) expressed their frustration at not having had such an opportunity: “I’d have liked to have sat down with one of the consultants or a stroke nurse and literally said, “Yes this is what happened” … Like a bit more, instead of saying we don’t know” [Sally, wife of stroke survivor].

Having a point of contact for information and advice was viewed as helpful: “Someone there that you could just ring” [Deirdre, stroke survivor], and having someone who was actively “checking in” on the survivor and their family was seen as particularly valuable. One example of this was a stroke support service run by a voluntary organisation and introduced during the pandemic, involving a phone check-in service and support from local stroke co-ordinators. As Tracey, an older stroke survivor, described: “Yeah somebody rings me every week … they’re very, very good. Just to make sure that you’re alright”. Access to this service was not universal, however, and stroke survivors frequently self-referred. For example, Colm, who accessed the service after his sister heard about it on the radio, explained that the stroke support he subsequently received was transformative: “[it] changed my life … my journey was just, you know, it was flipped on its head”.

Several participants described how they had built trusted relationships with specific staff, for example, a local stroke co-ordinator or a rehabilitation professional, who provided particular support, ranging from advice and signposting, to advocating for access to services. Jim (the husband of Denise, an older stroke survivor with aphasia) talked about “a very good physio [who] led us to chase things that we didn’t know about … And they’re basic … like fittings for her shoes, like the use of a commode, like the use of a side on the bed”. For Sally these relationships were a particular help during COVID lockdowns: “We had good working relationships with the physio and the OT that we could continue then through the shutdown and so, although we never saw them, we knew they were there and we had a port of call” [Sally, older wife of stroke survivor]. The general practitioner (GP) was sometimes mentioned as a default person who helped with referrals and signposting, with participants often told to contact their GP when they were looking for a service. Some participants found that their GP did provide this support, but many others felt that their GP did not have the capacity due to being “very stressed” [Susan], “too busy” [Eamon], or lacking knowledge (“the GP never heard of the Barthel code” [Ciara]).

There were also some severely negative experiences associated with a lack of responsiveness in communication. Four female partners of stroke survivors recounted negative experiences of interacting with doctors or consultants, describing how they did not feel listened to, that the time given to them was limited, or that they were spoken to in a sharp or unclear manner. A lack of trust in individual HCPs was expressed by a small number of participants. Poor communication experiences were often linked to the pressure that staff were under, particularly in hospital settings. For example Sally found it difficult to ask questions during out-patient appointments because “you just have a sense of they want [you] out the door as soon as possible” [Sally, older wife of stroke survivor].

Two stroke survivors who had memory or communication challenges felt that people with these difficulties were not understood or accommodated by the healthcare team while in hospital:

“I couldn’t speak at all. I might’ve had two sentences and then I dried up, I couldn’t say anything. Even though there were lots of things I wanted to talk about … I know they were under awful pressure and everything. But I felt that they could have tried a little bit harder to perhaps understand” [Lucy, stroke survivor].

Almost without exception, participants spoke about the challenging experience of sourcing information from stroke specialists on their individual stroke event within the acute hospital system, as well as difficulties with finding out the results of medical tests and getting information on stroke survivors’ prognosis and treatment options. This frustration was exacerbated during the COVID-19 pandemic when visitor restrictions to inpatient settings prevented family members from accessing their stroke specialist team members. For Martha, an older family carer, the lack of communication was the most frustrating dimension of her interactions with the hospital consultants: “And the worst part was the communications. It was horrendous, horrendous”. In fact, there were seemingly very few instances where information was easy to obtain from HCPs unless the participant had previous first-hand experience of stroke or, like Susan, had experience of working in healthcare and knew where to go for appropriate information: “I’d be very well used to dealing with medical people and very au fait with medical terminology, etc., etc.” [Susan, family carer].

Taking control and steering the way

As demonstrated, navigating the healthcare system following stroke emerged as a uniquely complex and arduous task. However, despite the very significant challenges they confronted, participants’ accounts also reveal how, perhaps against the odds, many took control of the navigational helm. Participants described drawing on any and all resources available to them and using persistence and determination in their attempts to proceed along the stroke care pathway. There are three main realms where the theme of taking control was apparent in participants’ accounts. The first related to participants’ experiences of gaining access to relevant knowledge and information while the second was associated with participants’ use of personal connections within the healthcare system to gain access to supports or therapies. The third was linked to the commitment of a small but important number of stroke survivors who advocated for themselves and other stroke survivors.

As outlined earlier, information was difficult to access through healthcare staff. Nonetheless, many participants rose to the challenge and educated themselves by spending extended periods of time completing Google searches, finding information leaflets or visiting the library for relevant books. Chloe, the daughter of a stroke survivor, noted that seeking information was complex given that “you don’t even know the question”. Sally explained that she took control in the context of a stark lack of available or easily accessible information.

“I’ve informed myself as much as I possibly can … if I hadn’t had access to the Internet and been able to inform myself and had a sense of what’s going on, I’d be totally in the dark because nobody sat down with me”. [Sally, older wife of stroke survivor].

For some participants, aphasia, cognitive problems, or old age contributed to the complexity of obtaining and retaining information. Although Séan, for example, was healthcare literate, having previously worked in the sector, memory loss and the retention difficulties he experienced when researching information about his stroke led to considerable distress: “I was having problems because every time I read, I left the book, first page I could take in, the second page, I couldn’t remember what the first page was about”.

While what stroke survivors and families knew led to them feeling more competent, who they knew was a significant facilitator to securing support, entitlements or services. Over half of the family members or stroke survivors reported that having a social connection within the healthcare system had been very helpful in anchoring support, securing access to a rehabilitation or nursing home bed or in accelerating access to services. The individuals within healthcare that some could draw on included nurses, a ward manager, consultant, occupational therapist, pharmacist, and a speech and language therapist. A number of participants mentioned other professionals in their networks who provided them with support in securing welfare or social entitlements or successfully completing grant applications for housing adaptations.

Participants were aware of the inequities arising from the quite critical role of what and who one knew in the navigation process. Freya, the sister of a survivor and a HCP herself, explained that her knowledge of the system, which informed the questions she asked, influenced the quality of the information she received from the hospital, including a “road map” for her brother’s care: “I wonder again if it wasn’t pressed by somebody who knows, like would another family get the same road map”.

Among a small number of stroke survivors, self-motivation was what drove their increased access to services, facilities and supports for themselves and for others. Harry, a uniquely motivated previous business owner and current older stroke survivor, had successfully advocated on several occasions for better services and rehabilitation equipment in the nursing home where he lived. Harry told how he used his tenacious personality to improve the living conditions of all residents in the nursing home.

“And so I started fighting for this last year right … And I was banging their doors down with emails, right. Like I mean that now, I was relentless and I can be like that … Yeah, and I just wasn’t giving up. I said, “This is not for me, it’s for everybody, you know”.

Another sociable and driven survivor, Séan, had set up a successful peer stroke support group. Séan believed that this group enabled stroke survivors like himself to “share stories about re-learning, about regaining strength, to manage and navigate our own life” and also encouraged them to advocate for themselves and each other.

Summary of findings

Our findings demonstrate that the effectiveness of navigation for stroke survivors and family members was shaped by a complex array of interacting factors. In line with Ryvicker’s behavioural ecological model of healthcare access and navigation several environmental characteristics such as healthcare system resources and geographic location and individual characteristics including age and health were identified and are reported below.

Identified barriers and facilitators to stroke care navigation

The participants identified a range of barriers and facilitators to navigating care following stroke. The healthcare environment, or the way in which healthcare was organised and delivered – including a fragmented system with an absence of care continuity and poor inter-service links, geographical inequity, and arbitrary criteria for access to services (such as age) – were identified as barriers to effective navigation. Barriers related to healthcare service providers centred on unresponsive relationships with HCPs, long waiting list and the lack of availability of individualised information and appropriate supports. Many of these barriers were exacerbated during the COVID-19 restrictions. For stroke survivors, there were a range of individual characteristics and behaviours that facilitated navigation, including calling on help to secure supports, having the ability to pay for private care, and employing personal resources such as motivation to self-inform and drive their own recovery. Barriers for stroke survivors included mental health, communication, and co-morbidity challenges. Similarly, for family members, the burden of managing their own health and caring responsibilities often acted as a barrier to engaging in the onerous tasks required for effective navigation. Family member characteristics and behaviours that facilitated navigation included using internal resources such as having prior knowledge of the healthcare system, proactively seeking information and services, paying for services or supports privately, or drawing on external resources such as help from voluntary groups or contacts they had within the healthcare system.

Discussion

Four themes were identified to describe stroke survivors’ and family members’ experiences of navigating and accessing stroke care in Ireland. The first theme was the dis-continuity of care that characterised their navigation experience, with a drop-off in healthcare access following discharge from acute services and widespread perceived inequities in access to care. This discontinuity was exacerbated during COVID-19 pandemic restrictions. The second theme was associated with the emotional impact on stroke survivors and their families of having to ‘battle’ to secure relevant supports. The third theme described the importance of relationships with healthcare staff based on responsive communication, as a key factor in easing the burden of stroke care navigation. The fourth and final theme related to participants’ taking navigational control by actively seeking information, using their personal connections and resources to gain access to support, and advocating for themselves and others. These key themes, which illustrate the complex interplay of environmental, relational, and individual barriers and facilitators that shape stroke survivors’ and family members’ experiences of stroke care continuity, will be discussed.

Navigation in a fractured and pressured system

This study’s key findings are supported in the literature elsewhere and suggest that stroke healthcare systems are often fragmented [46], that rehabilitation services are fractured and under strain, and that there is a notable lack of resources leading to waiting list ‘bottle necks’ [47]. Furthermore, UK research indicates that the services offered to stroke patients can be a poor fit and that families are forced to seek private therapies [7,14].

The lack of continuity and consistency in services experienced in this study exemplifies the co-ordination deficits that often characterise health-care delivery systems [9]. Delivery of complex services requires both specialisation of tasks and co-ordination across tasks, and healthcare systems often prioritise specialisation at the expense of co-ordination [9]. This co-ordination work is often left to patients and their families, as a kind of “invisible work” [48, p1]. In this study, the combination of complex stroke care needs, with poor co-ordination of services, led to a considerable level of navigational burden on patients and their families.

Study participants experienced decisions around treatment and healthcare planning as substantial stressors, as has been found elsewhere [21]. Participants’ co-ordinating responsibilities were occasionally alleviated by help from family members, friends, practitioners, or voluntary organisations. While in the UK, the use of navigational supports such as continuity case management and stroke care pathways are widespread [49], these enablers to navigation were not commonly available to this study’s participants. Several studies have documented that independently navigating healthcare, with little support, in an environment with poor discharge planning and gaps in community services, can take a considerable psychological toll on patients [6,20,28] and result in loneliness, depression, anxiety, social isolation, and a poor quality of life over the longer term [50–52].

Stroke care during the pandemic

Recent research illuminates the significant and widespread impact of the COVID-19 pandemic on stroke care that resulted in disrupted services and increased inequalities in patient outcomes [22,23,53]. Disparities between stroke survivors’ need for supports and the availability of supports, were found in this study to be singularly amplified when community services were abruptly shut down due to COVID-19 restrictions. While some participants had been offered therapeutic services via video, stroke survivors’ and family members’ satisfaction and uptake of such interventions was inconsistent, with some describing particular challenges for stroke survivors with communication or cognitive difficulties. Similarly, Culleton [23] investigated the perspectives of occupational therapists in Ireland on using video therapy during the COVID-19 pandemic, describing that although the supports they could offer by phone or video were more challenging for patients due to their frustration with the mode or people’s lack of therapy equipment at home, they did allow for the continuation of service in a limited form for some patients.

Effective communication in stroke care

The nature of the relationships between stroke survivors, family members and HCPs emerged as an important mediator of informational exchanges in this study, as is highlighted by seminal navigational theory [9]. This study’s findings show that stroke survivors’ and family members’ experiences of good interactions with HCPs across the care trajectory increased people’s confidence and trust in treatments, and also increased their motivation to drive the recovery process. Positive communication experiences across the continuum are not often evidenced in the literature; rather, studies have found that interactions between stroke survivors and HCPs can be uncaring or unempathetic [54] and can create a lack of trust or confidence in professionals [55,56].

Poor relationships can negatively impact on effective collaborative goal setting [57]. The suggestion by Creasy et al. [15] that collaborative relationships should involve families in care planning, with supportive training to enable survivor preparation for post-discharge transition to home, speaks to many of the challenges described by family members in this study. As mentioned previously, for stroke survivors in this study with cognitive or communication challenges, experiences of poor interactions with HCPs were particularly distressing, and one participant described how aphasia training for HCPs would improve relationships and communication for this group of stroke survivors. Similarly, Horton et al. [58] in UK proposes that HCP skills training and HCP responsiveness when supporting people with aphasia during rehabilitation can create a ‘culture of access and inclusion’ for all stroke survivors during rehabilitation. Likewise, Lo and Chau [59] recently reported that caring relationships with staff encouraged Chinese stroke survivors with aphasia’s participation in community rehabilitation programmes. Participants in this study believed that better inter-service communications can help to build trust and ease navigational challenges, particularly during times of transition, as noted in other research [7,18,60].

One critical communication gap for both stroke survivors and family members identified in this study was understanding about the primary cause of the stroke. Parappilly et al. [61] in Canada identified that although getting answers about the cause of stroke was a “soul searching experience” this could lead to stroke survivors addressing and reducing their secondary risk factors. Practical information was also important to this study’s participants. Similarly, Luker et al.’s [62] review found that information about recovery and personal care needs are essential to stroke survivors ability to cope with disability following their discharge to home. Lastly, like this study’s findings, the literature shows that the timing of information retrieval is an important factor since, at certain junctures, such as immediately following a stroke or at the point of discharge from acute care, both stroke survivors and carers can have difficulties in assimilating important information [13,63].

Navigation knowledge, skills and capacity as a source of inequity

This study’s findings clearly indicate that gathering information on how to access appropriate supports and services was tedious and challenging for both stroke survivors and family members and that it required a high level of healthcare literacy and determination. Similar to research conducted internationally [14,15,21,64,65], proactive and persistant actions on the part of stroke survivors and family members, such as continually calling on HCPs for answers, were described as the only means of aquiring adequate information.

Stroke survivors or family members in this study who had prior experience of the healthcare system were at an advantage, not only in terms of knowing where to go and how to access information, but also in understanding healthcare and medical information. In agreement with this finding, Rochette et al. [66] in Canada demonstrated that being in the healthcare sector or having a relative in the sector was a facilitator to more effective and proactive information seeking and service navigation, and more successful interactions with HCPs. Australian research has also noted that people who lack personal knowledge are at a navigational disadvantage, especially when there is little in the way of a ‘road map’ for care continuity [21].

Research in the US indicates that the administrative burden associated with healthcare access (e.g., information seeking, form filling, and phone calls) can lead to delayed and foregone care, and that this is more likely to happen to those with lower income, lower education, and especially those with disability [67]. Herd & Moynihan [68,p.752] describe this as a “‘Catch-22′: those who need the most help are most vulnerable to falling before the administrative burdens placed in their way”. This assertion resonates with our study’s findings in that participants often felt so stressed and overwhelmed by the combined challenge of managing their own health and coping with navigational challenges that they avoided or gave up trying to access needed supports.

Self-determination and advocacy

Building on relationships can, according to a synthesis of qualitative literature by Chen et al. [20] in Australia, encourage stroke survivors’ self-management to navigate follow-on care in the community. Several survivors in this study were depicted by their family members as having strong motivation and self-efficacy to realise their individual care and supports needs and goals for recovery, as was evidenced elsewhere [32,49,69]. Danish research also proposes that active and engaged stroke survivors feel in greater control of their recovery process, and that peer supports are a significant facilitator of this sense of empowerment [19]. Some stroke survivors in this study were self-motivated, showing high self-determination and drive to increase access to supports not only for themselves but also for other survivors. Stroke survivors’ purposeful advocacy for the wider stroke community was an extraordinary feature of this study, having a positive impact on the stroke survivors’ community, with future potential as an important social resource.

Implications for practice and policy

Appreciating that this study’s participants described more positive experiences of acute stroke care in comparison to their community care experiences, policy and practice can now attend to the later phases of care by building on the widely reported significant advancements that have been made within the acute stroke system [2,70–72]. This study’s findings have provided strong insight into the experiences of stroke survivors and their families which in turn have implications for policies and practice that aim to provide an effective continuum of care for stroke survivors and their families. These recommendations to practitioners are based on participant’s lived experiences and are supported by the literature. Firstly, it is suggested that interactions between practitioners and stroke survivors need to be simple, empathetic, and transparent, using communication tools when needed for older stroke survivors or those with a communication or cognitive disability [15,73]. Recognising that the support needs of stroke survivors change over the care continuum and that many people become more dependent over time, best practice follow-on care could include standardised re-evaluation of abilities (including cognitive, physical, functional and psychological) at various time points over the longer term [13]. It is important too that stroke survivors’ information needs and self-identified main goals for recovery be determined in order to inform a person-centred pathway to recovery [74].

Providing support to patients to navigate services post-stroke could reduce the inequity arising from differences in navigation skill and capacity. This could include standard documentation containing information and signposting about services, such as the “stroke passport” envisaged in the Irish National Stroke Strategy [75]. Recently, there has been interest in patient navigation support programmes for stroke, with an evolving evidence base indicating potential to improve post-stroke outcomes, including quality of life [12]. These programmes can be delivered by specialist or non-specialist staff, and can provide a range of navigational supports including care co-ordination, information provision and emotional supports [12]. Considering the positive experiences in this study among those who received specific support with navigation, often from local stroke group co-ordinators, there is a clear rationale for implementing patient navigation support services in a national and consistent way.

However, improved information, signposting and patient navigation support services may be of limited benefit if the system itself is extremely complex. As Sofaer [9] and Ryvicker [10] note, improving navigation also requires improving the co-ordination and integration within the system. The recent Action Plan for Stroke in Europe includes a recommendation for evidence-based care pathways that “cover the entire chain of care”, and are clear and well understood by the public [70, p314]. They also acknowledge that further research is required to identify optimal care pathways for long-term post-stroke support. In the Irish context, the national neurorehabilitation strategy [76] includes a vision for managed clinical networks that would significantly improve co-ordination and integration of post-stroke rehabilitation services. National, standard clinical pathways would be easier to navigate, and reduce the apparent geographical inequality. However, implementation of this strategy has to-date been slow and appears to have been a low priority for politicians and policy makers [77].

The development of navigational interventions (e.g., support services, documentation such as stroke passports) and stroke care pathways, would benefit from co-design with motivated and knowledgeable stroke survivors who have the potential to empower the wider stroke community [78]. Such an approach would take advantage of the wealth of lived experience, and the capacity and passion for advocacy that was so evident among participants in this study. There is also a potential role for survivor/carer advocacy in increasing political priority for developing post-discharge rehabilitation and support services.

Strengths and limitations

A central strength of this study is that the lived experience of stroke care navigation was prioritised allowing important insights to emerge from the interviews conducted with stroke survivors, including those with cognitive or communication challenges, and their families. Many of the interviews were conducted during the COVID-19 pandemic, which was a unique historical time in Irish stroke care, and the participants’ experiences make a valuable contribution to understanding of navigational processes used during this challenging time. This study also has some limitations to report. Stroke survivors and family members who had difficult experiences of the system may have been more likely to volunteer to participate in the study. Nevertheless, there were many insights provided by these participants’ experiences that can potentially guide solutions to more effective and easier navigational processes. While this study captured the voice of stroke survivors and family members, a larger and more diverse group of stakeholders, including individuals who work directly in supporting stroke survivors and their families to co-ordinate their care following stroke, may have benefitted the study and yielded a fuller understanding of system barriers and facilitators to stroke care continuity.

Conclusion

This study’s findings build on existing evidence by advancing understanding of the factors that influence stroke care navigation and access in Ireland. This research has offered novel insights into the experiences of stroke survivors and family members as they moved through the Irish stroke care system. The participants’ navigational experiences were often extremely challenging due to barriers such as unavailable or insufficient services and information, the burden of paperwork, access eligibility criteria, unresponsive HCPs and poor mental health, all of which presented particular challenges for individuals with communication deficits. However, facilitators to effectively navigating and accessing stroke care were identified and include having trusting relationships with HCPs, harnessing supports for navigation, and being self-motivated. Indeed, stroke survivors themselves offered a unique perspective on their stroke care journey that was facilitated by inner-wisdom and community advocacy, which future research could usefully explore in greater depth.

Disclosure statement

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

Additional information

Funding

This work was supported by the Health Research Board, Ireland [ARPP-2020-010].