Patient, carer and health worker perspectives of stroke care in New Zealand: a mixed methods survey

Abstract Purpose It is important to understand how consumers (person with stroke/family member/carer) and health workers perceive stroke care services. Materials and methods Consumers and health workers from across New Zealand were surveyed on perceptions of stroke care, access barriers, and views on service centralisation. Quantitative data were summarised using descriptive statistics whilst thematic analysis was used for free-text answers. Results Of 149 consumers and 79 health workers invited to complete a survey, 53 consumers (36.5%) and 41 health workers (51.8%) responded. Overall, 40/46 (87%) consumers rated stroke care as ‘good/excellent’ compared to 24/41 (58.6%) health workers. Approximately 72% of consumers preferred to transfer to a specialised hospital. We identified three major themes related to perceptions of stroke care: 1) ‘variability in care by stage of treatment’; 2) ‘impact of communication by health workers on care experience’; and 3) ‘inadequate post-acute services for younger patients’. Four access barrier themes were identified: 1) ‘geographic inequities’; 2) ‘knowing what is available’; 3) ‘knowledge about stroke and available services’; and 4) ‘healthcare system factors’. Conclusions Perceptions of stroke care differed between consumers and health workers, highlighting the importance of involving both in service co-design. Improving communication, post-hospital follow-up, and geographic equity are key areas for improvement. Implications for rehabilitation Provision of detailed information on stroke recovery and available services in the community is recommended. Improvements in the delivery of post-hospital stroke care are required to optimise stroke care, with options including routine phone follow up appointments and wider development of early supported discharge services. Stroke rehabilitation services should continue to be delivered ‘close to home’ to allow community integration. Telehealth is a likely enabler to allow specialist urban clinicians to support non-urban clinicians, as well as increasing the availability and access of community rehabilitation.


Introduction
Globally, stroke is a leading cause of death and disability [1]. In New Zealand, approximately 9,000 people have a stroke each year, and this number is expected to rise by 40% over the next decade primarily due to an ageing population [2]. Of the 20 District Health Boards (DHBs) responsible for funding health services in their area, and 28 hospitals routinely delivering acute stroke care and rehabilitation in New Zealand, six DHBs have one or more small rural hospital in addition to the main centre. This equates to a total of 28 hospitals in New Zealand providing stroke care, potentially leading to inequities in access to best-practice stroke care. These hospitals provide both hyperacute (first 24 hours of care) and acute inpatient care as well as delivering inpatient and community rehabilitation services. Internationally, research reports inequities in accessing best practice stroke care both by geographic location [3] and by ethnicity [4]. This prior research has been important to identify service gaps and drive improvements in stroke care. However, it is also critical to understand patient perspectives and what they believe is important to them about accessing care and specialist services.
A qualitative research approach can be used to more deeply explore what is important to patients or health workers about the quality of healthcare services, and expectations of access or the influence of different resources [5]. In previous research it has been found that patients report varying degrees of satisfaction with the care received in hospital and following discharge [6]. The experience of stroke services also differs between ethnic groups, and structural racism is believed to contribute to ethnic health disparities [7]. Therefore, it is essential that research is designed to examine stroke experiences from different perspectives, including from a range of ethnicities and cultural perspectives and across geographic regions. To date, there has been a lack of whole country New Zealand-based research exploring how consumers and health workers perceive stroke services and what barriers they face across the entire stroke care continuum. We also lack national studies regarding patient/carer preference for treatment location or health worker thoughts on service centralisation, where patients are admitted to a central, specialised hospital, rather than the nearest centre [8].
The objectives of this study, using a mixed-method approach, were: 1) to explore patient/carer and health worker perceptions of stroke care services; 2) to understand barriers to accessing optimal stroke care from both patient/carer and health worker perspectives, and identify potential solutions; 3) to identify patient/carer preferences for treatment location; and 4) to gain an understanding of health worker perspectives on centralisation of stroke care services.

Methods
REGIONS Care is a multi-part nationwide observational study assessing the impact of geography and ethnicity on stroke care access and outcomes across New Zealand (full methods have been described elsewhere [9]. The 28 hospitals providing stroke care in New Zealand entered consecutive patients admitted to their hospital with a confirmed diagnosis of the stroke into a central database over a three to the six-month period in 2018. Data on stroke care access and clinical outcomes were collected for a total of 2,379 patients. Here we report the results of an online survey of health workers (health professionals, managers and policymakers) and consumers (patients and carers). The survey was developed by the study's primary investigator with the key research questions in mind (Appendices 1-3). Significant input in the development was received from the Stroke Foundation and a consumer representative to optimise accessibility and readability, especially for non-clinicians. The survey for consumers had 27 questions and for health professionals 15 questions. It was administered online through SurveyMonkey at the end of 2018/beginning of 2019, and reminders were sent via email.
We identified health workers via National Stroke Network mailing lists, which includes approximately 400 health professionals from across New Zealand in medical, nursing, allied health and operational professions. We also identified consumers from the REGIONS Care consented patients database, approaching those with a documented email address. Consumers who previously participated in focus groups [9] (results reported separately) were excluded. We stopped recruitment once a target of 40 responses in each group was achieved. This number was deemed sufficient to be able to make some generalisations from the descriptive data and to gain a range of qualitative perspectives from participants on their opinions and experiences.
The surveys collected data on respondent characteristics, rating of stroke services and rating of priority areas for improvement of stroke services in different phases of stroke care (health workers only) using purposely-designed Likert scale responses. Free-text responses were collected on perceptions of stroke care, barriers to stroke service access and related improvement suggestions.
Consumers were asked about preferences for treatment location; health workers about opinions on stroke service centralisation. Surveys are shown in the Supplementary Material.
Descriptive statistics were used to summarise respondent characteristics, ratings of stroke care services and other quantitative data. Data from free-text responses were analysed using thematic analysis. Two researchers independently coded all responses, initially on a line-by-line basis (open coding) before comparing/discussing their findings, with subsequent analysis exploring the relationships between codes to develop higher order concepts. This peer coding and negative case analysis (specifically looking for examples of data that did not fit with the emerging analysis) was used to broaden the range of interpretation of data, support reflexivity in analysis, and to enhance the trustworthiness of the findings. This analysis was discussed in depth with the core study team comprised of three females and one male (all aged 40-50), three of European descent (two academic physiotherapists and one academic neurologist) and one of New Zealand indigenous M� aori descent (academic general practitioner). Three are senior researchers; one, the female physiotherapist, a Ph.D. candidate. All are based in urban centres, but have experience working in provincial/underserved healthcare settings. We used the quantitative data alongside the qualitative free-text responses to synthesise key themes identified from the collective data.

Ethics approval and study funding
The study is funded by the Health Research Council of New Zealand (HRC 17/037) and received ethics approval from the Central Region Health and Disability Ethics Committee (17CEN164).

Results
Surveys were sent to 149 consumers (118 patients, 31 family members/carers) and 79 health workers. Responses were received from 53 consumers (41 patients, 12 family members/carers; overall response rate 35.6%) and 41 health workers (response rate 51.8%). Table 1 shows respondent characteristics. Where a survey question has missing data, this has been noted in the text or in the relevant table to account for variable denominators across the data.
1. Perceptions of the quality of New Zealand stroke care All respondents were asked to rate stroke care in New Zealand. Forty of 46 (87% -missing ¼ 7) consumers rated stroke care as 'excellent' or 'good', compared to 24 of 41 (58.5%) of health workers. The remaining respondents in both groups gave an 'average' rating with no 'poor' ratings. Table 2 shows stroke care ratings by consumers across the care continuum. Health workers rated the following as the top five priority areas for stroke service improvement, considering both urgency and impact: (1) community rehabilitation; (2) primary prevention; (3) public health campaigns; (4) transient ischaemic attack care; and (5) hyperacute care. Inpatient rehabilitation, acute care, transitional care facilities, community non-governmental organisations (NGO) and residential care facilities were ranked as lower priorities or non-priorities overall.
From free-text answers about perceptions of stroke care services, we identified three themes: a. 'variability in care by stage of treatment' -a theme that we identified in both consumer and provider responses; b. 'impact of communication by health workers on the care experience' (consumer only); and c. 'inadequate post-acute services for younger patients' (health workers only). Selected quotes serve to illustrate the identified themes, with the age bracket of the respondent in brackets after the quote.
a. Variability in care by stage of treatment A common view shared by consumers and health workers was that stroke care was broad of high quality in hospitals, but that this quality was substantially reduced immediately after hospital discharge. have been a bit more support post hospital. A stroke is a pretty big deal, even though mine was minor it continues to affect me." -Consumer 11 (50-69 years) When describing gaps in care after hospital discharge, consumers often reported experiencing difficulty accessing support, not receiving timely follow-up or insufficient length of follow-up. Stroke recovery continues after discharge from the hospital however, many respondents described being left with unanswered questions and feeling unsure about what will happen after leaving the hospital. Having the opportunity to ask questions after leaving the hospital was described as important.
"Follow up when I came home was great, was helpful to talk and ask the questions I hadn't in the hospital and know what to expect and know the things I was experiencing were normal." -Consumer 19 (70-89 years) Consistent with these responses, health workers generally viewed hyperacute and acute services as being well provided, although variations by hospital geographical location were noted. Respondents thought that stroke rehabilitation services, and in particular community rehabilitation, were insufficient. In contrast, some respondents highlighted how poor communication could have a negative effect on the overall care experience. This included not feeling listened to, poor coordination of information between health services and a lack of information provision.  c. Inadequate post acute services specific for younger stroke patients Health workers emphasised that stroke patients aged under 65 years were not well served by current post-acute services. Respondents acknowledged that younger patients' needs differ from those of older patients and that specific rehabilitation services, including a return to work and driving, were limited.
"Rehabilitation and return to work activities probably not sufficient to support younger stroke patients. Services appear to be geared towards patients who are over 65 and funding streams reflect that." -Manager 2. Barriers to accessing stroke care and suggested improvements All respondents were asked whether they thought ethnic or geographic inequities existed in accessing stroke care in New Zealand. Seven of 46 (15.2% -missing ¼ 7) consumers and 32/39 (82.1% -missing ¼ 2) health workers thought ethnic inequities existed, and 28/44 (63.6% -missing ¼ 9) and 40/41 (97.6%) thought geographic inequities existed. None of the five (9.6%) consumers who identified as M� aori or Pacific thought that ethnicity impacted access to stroke services. In addition, 29/38 (76.3% -missing ¼ 3) health workers identified additional disadvantaged groups including patients under age 65, living in residential care, and/or from low-socioeconomic backgrounds. From the free-text answers around stroke care barriers, one theme, shared by consumers and health workers, was -a. 'geographic inequities impacting access to stroke care' -and three other themes were: b. 'knowing what is available' (consumers), c. 'patient factors' (health workers), and d. 'healthcare system factors' (health workers). The only issues raised about ethnicity-related challenges were language barriers for non-English speakers.
a. Geographic inequities impacting access to stroke careshared theme Some consumers recognised the need for immediate action after stroke symptom onset, and many identified potential difficulties for remote patients to access an "appropriate facility" in time for acute stroke therapy. Several respondents suggested that living in a main urban centre was an advantage as there were more services available in larger hospitals. A similar response was noted from the non-urban perspective:

"Being in a dedicated stroke unit is best and our local hospital didn't have one. The same could be said for lots of small hospitals in NZ." -Consumer 46 (family member)
Health workers emphasised that differences in hospital size and geographic location affected access to key medical interventions and rehabilitation services. Aligning with consumer responses, health workers suggested that patients living in nonurban areas were less likely to be able to reach a hospital in time for acute stroke therapy. Other examples highlighting geographic inequities included less consistent ability of non-urban hospitals to provide high quality stroke care out of hours, less funding for non-urban hospitals, and poorer availability of specialist clinicians.

"I feel smaller rural communities don't get the same [services] as larger urban ones that have dedicated services as local clinicians have to be a jack of all trades." -Therapist
b. Knowing what is available One consumer described that not knowing what services were available was a barrier to accessing support. Another indicated that care was available "if requested" and suggested that education on how to get help when needed would be useful. Another consumer suggested that Stroke Foundation community advisors should provide all the relevant information regarding services and then "it would be up to the patient whether they wanted to pursue the help offered" (Consumer 33) (50-69 years).
c. Knowledge about stroke and available services This theme highlighted that health workers felt that poor health literacy, a lack of knowledge of stroke symptoms and insufficient awareness of the time-critical nature of receiving treatment after symptom onset on the part of the patients were barriers to accessing optimal stroke care. While these perceptions seemed to be applied to patients in general, they were also specifically mentioned with respect to M� aori and Pacific Peoples as highlighted in the following quote:

d. Healthcare system factors
Health workers suggested that a lack of funding, especially for rehabilitation services, and insufficient staffing levels led to barriers in accessing services, particularly for disadvantaged populations. In addition, the cost implications for patients to visit their general practitioner and fill prescriptions were recognised as a barrier. Other examples of healthcare system barriers included variable coordination between services ("especially between the transitions of stroke care" -Other health worker) and division of services by age (over/under 65 years).
"Enough staffing and resources to be able to put the time into assisting these [disadvantaged] populations. There's a standard one size fits all and as we know in healthcare, this is not always the case. One size may fit most but not all." -Therapist

Improving access to stroke care
When asked about possible improvements, consumers emphasised that better follow-up after hospital discharge was needed. They described the importance of having someone to discuss concerns, setbacks and recovery with or to seek advice regarding symptoms and suggested community counsellors, regular postdischarge follow up phone calls or helplines.

"My only suggestion is -to have counsellors for free after release of patient -to be available to speak with to listen to and answer all the questions we stroke patients have that are not answered in detail while in hospital." -Consumer 4 (50-69 years)
Health workers suggested expanding the use of acute telestroke to telerehabilitation where urban specialists provide consultancy services for generalist inpatient and community rehabilitation professionals in the non-urban setting. It was also suggested that having regional policies, training and access to specialist support, would help to "enable local delivery of stroke services at similar consistency and quality to tertiary centres" (Doctor). Telerehabilitation was proposed to help support generalist rehabilitation clinicians, but also to provide stroke specific rehabilitation to patients in their own homes. An important consideration highlighted was to ensure the inclusion of M� aori and other ethnic minorities as well as rural communities in processes for changing models of care.

Centralisation of care
Consumers were asked about their preferences for treatment location, preferred health provider involved in treatment location decision-making, and what level of involvement they wished to have. Thirty-three of 46 (71.7%) respondents preferred transfer to a specialised hospital either in all situations, when there were additional treatments offered, or if their life was in danger. Ten of 46 (21.7%) consumers indicated that their preference was to stay close to home for treatment in all circumstances. Consumers preferred a collaborative approach between health care providers when making decisions on treatment location; 23/45 (51.1%) wanted their general practitioner to be involved in the process and 20/45 (44.4%) wanted the non-urban hospital and urban hospital doctors to make a joint decision. Twenty of 44 (45.5%) of respondents preferred that the doctors just decided on the best treatment location while the remainder wanted to be involved in the process to some extent (Table 3). Health workers identified both advantages and disadvantages of centralising care, with respondents generally in favour of centralisation of hyperacute and acute services to optimise the quality of care. Respondents believed that rehabilitation, in particular community rehabilitation, needs to be provided locally to allow family involvement and community integration.
"It's important to have centres of excellence around new technology like clot retrieval, but rehab needs to be more easily accessed in local communities" -Therapist Concerns with centralisation identified by some health workers included the impact on families supporting patients at significant distances from home creating hardship. In addition, respondents emphasised the need for local centres to remain viable, to be "capable of delivering acute care to the maximum service ability" (Nurse) and ensure that clinicians at these hospitals maintain skills in stroke management. These thoughts were emphasised as it was acknowledged that some patients will always prefer to be treated locally.

Discussion
In this study we have explored consumer and health worker perceptions of stroke care in New Zealand, including barriers to accessing optimal care. Table 4 provides a summary of recommendations for improving stroke care, based on consumer and health worker responses. Consumers generally rated stroke care better than health workers did. We found that while consumers and health workers shared some views, including the variability and geographic inequities in access to care across the continuum, there were some important differences. Consumers generally reported a positive experience of in-hospital care. However, there was general dissatisfaction with the level of post discharge support provided. This has been identified as crucial, as some consumers report feeling abandoned and unsupported after leaving hospital [10]. Consumers seemed willing to ask for assistance and be involved in arranging follow-up but needed to be provided with information on what services were available. Previous research has similarly found that consumers want more detailed information on what services are available in the community and how to access them [10].
The gap in post-discharge follow-up and support for consumers was also highlighted by health workers, whereby community rehabilitation was considered the area of stroke care requiring the most urgent improvement. Addressing the gap in post-discharge support is important to ameliorate the current dissatisfaction with support post-discharge. Options could range from the introduction of a simple routine phone follow-up service, more extensive use of available NGO services, working more closely with primary care, implementation of the "Take Charge" self-directed rehabilitation intervention [11] and a fully resourced early supportive discharge service for people with stroke. Health workers also identified gaps in rehabilitation services, especially around return to work and driving, for patients aged under 65 years. In New Zealand M� aori and Pacific Peoples experience stroke at a significantly younger age than European New Zealanders and are more likely to be employed at the time of stroke [12]. It is imperative that all patients with stroke who have rehabilitation needs, irrespective of age, are able to access individualised, age-appropriate rehabilitation services.
Health workers identified patient factors as a cause for access barriers. Poor health literacy, poor knowledge of stroke symptoms and a lack of awareness of the importance of time-critical treatment were all highlighted as factors creating barriers to receiving optimal treatment. The perception of patients arriving late for treatment was particularly prevalent with respect to M� aori and Pacific patients. Preliminary quantitative data from our wider study has in fact shown that there is no difference in delay in getting to the hospital after stroke onset for M� aori or Pacific patients compared to New Zealand Europeans [13]. With this misperception about the delay in hospital presentation existing amongst health workers, consideration should be given to whether there are other inherent biases that health workers may have that could affect treatment or a patient's stroke care experience. Campaigns in New Zealand using F.A.S.T messaging have been found to be successful in improving the public's awareness of stroke symptoms and the time-critical nature of stroke, however, the benefits of these campaigns reduced when they ended [14]. Ongoing F.A.S.T message campaigning is likely needed to ensure sustained public awareness. Another important finding was the difference between consumer and health worker perceptions of whether ethnic inequities exist in New Zealand stroke care. Most health workers thought they do exist, while less than a fifth of all consumers surveyed and none of the M� aori or Pacific consumers thought that ethnicity impacted access to stroke services. However, it is important to acknowledge the low number of respondents within these ethnic groups and a larger sample may yield different results.
Evidence from the United Kingdom has shown that centralisation of services via a 'hub and spoke' model of hyperacute care is effective at improving access to best practice stroke care and outcomes [15]. Patients generally reported a good care experience, prioritising quality of care and outcomes over the disadvantage of having to travel further for this care [16]. Findings from this survey showed that most consumers would prefer being transferred from their local hospital to a specialised hospital in at least some situations, even if this means being treated further away from home. Options for transfer to specialist services probably need to be more readily offered and discussed with patients, carers, and affiliated health providers. On the other hand, the survey confirmed that centralisation of some stroke services clearly will not suit everyone and may have other health systems drawbacks such as threatening small hospital viability, and transport costs. Another option to improve care at smaller hospitals would be through increasing the use of technology to allow specialist clinicians to provide support via telehealth and by providing opportunities for upskilling generalist clinicians through stroke education including simulation exercises.
A strength of this study is the inclusion of consumers and health workers providing a broad perspective, including those of health professionals across the care continuum, as well as managers and policymakers. A further strength was the mixed methods design of the survey, giving respondents the opportunity to provide more detailed answers to questions. One of the limitations of using an online survey is that it may exclude respondents with limited computer access or skills. We attempted to minimise this by sending out paper copies to those who requested them, however, the style of information collection via survey, rather than face-to-face may not suit all ethnic groups. Another limitation with surveys is that we cannot expand on the responses provided, unlike with interviews, and as respondents self-select there is a risk of bias. In addition, there was limited information about M� aori or Pacific perspectives in this data, so there are likely to be viewpoints from these Peoples that have not been identified but which may be important. Finally, the sample size may not be large enough to capture an accurate reflection of stroke care experiences and allow generalisability to all consumers and health workers. To partially mitigate this, participants were recruited from across multiple ethnic groups, with significant age ranges and professional backgrounds, in an entire nation.
In summary, the findings from this survey provide important insights into stroke care experiences for patients and have highlighted areas along the stroke care continuum that require attention to improve the overall care experience. There are important differences in perceptions between consumers and health workers underscoring the importance of involving consumers in the design of future services. Improving communication, post-hospital follow-up, community rehabilitation, and geographic equity are key areas for improvement with telehealth a likely strong enabler. In addition, while some consumers would prefer to stay at their local hospital, more would prefer to transfer to specialist centres to achieve better quality service access in at least some situations. This finding, along with health worker perspectives of centralisation especially for acute stroke services, is important when considering models of stroke care in the future.