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Factors influencing follow-up care post-TIA and minor stroke: a qualitative study using the theoretical domains framework

Abstract

Background

Follow-up care after transient ischaemic attack (TIA) and minor stroke has been found to be sub-optimal, with individuals often feeling abandoned. We aimed to explore factors influencing holistic follow-up care after TIA and minor stroke.

Methods

Qualitative semi-structured interviews with 24 healthcare providers (HCPs): 5 stroke doctors, 4 nurses, 9 allied health professionals and 6 general practitioners. Participants were recruited from three TIA clinics, seven general practices and one community care trust in the West Midlands, England. Interview transcripts were deductively coded using the Theoretical Domains Framework and themes were generated from coded data.

Results

There was no clear pathway for supporting people with TIA or minor stroke after rapid specialist review in hospital; consequently, these patients had limited access to HCPs from all settings (‘Environmental context and resources’). There was lack of understanding of potential needs post-TIA/minor stroke, in particular residual problems such as anxiety/fatigue (‘Knowledge’). Identification and management of needs was largely influenced by HCPs’ perceived role, professional training (‘Social professional role and identity’) and time constraints (‘Environmental context and resources’). Follow-up was often passive – with onerous on patients to seek support – and predominantly focused on acute medical management (‘Intentions’/‘Goal’).

Conclusions

Follow-up care post-TIA/minor stroke is currently sub-optimal. Through identifying factors which influence follow-up, we can inform guidelines and practical strategies to improve holistic healthcare.

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Introduction

Transient ischaemic attack (TIA) and minor stroke are important risk factors for major stroke. Over 46,000 people experience a first TIA or minor stroke per year and half a million people live with TIA and/or minor stroke in the United Kingdom [1].

National guidelines promote rapid diagnosis and long-term management that focuses on stroke prevention [2,3,4]. However, many people with TIA and minor stroke feel unsupported in stroke prevention – both medication and lifestyle change – and often lack basic understanding of their diagnosis, stroke risk and preventative medication [5]. Furthermore, many people experience important residual impairments post-TIA and minor stroke; including, fatigue, psychological and cognitive problems [5,6,7,8,9]. These impairments can affect quality of life, ability to return to work or usual activities, and relationships with family and friends [5, 10,11,12,13,14,15]. Therefore, person-centred care after TIA and minor stroke should be multifaceted and encompass (i) information provision (diagnosis and stroke risk); (ii) stroke prevention (medication and lifestyle change); and (iii) holistic needs (residual problems and return to work and usual activities) [5, 16]. However, follow-up care is reported to be inadequate and variable with patients feeling abandoned after specialist review [5].

Several studies have explored TIA and minor stroke patients’ perspectives of initial treatment and follow-up [10, 14, 16]; however, none have investigated healthcare providers (HCPs) experiences. To improve future care, it is important to identify gaps in follow-up healthcare provision and understand influences on related HCP behaviours. This qualitative study aimed to explore factors influencing holistic follow-up care post-TIA/ minor stroke among different HCPs (doctors, nurses, allied health professionals [AHPs]) and across different health care settings (primary, secondary and community care).

Methods

Study design

Qualitative, theory-guided, semi-structured interviews. A qualitative approach was selected as this study focuses on exploring attitudes and perceptions of HCPs. Semi-structured interviews were preferred to focus groups because it allowed the researcher to obtain richer and deeper data.

Theoretical domains framework

Changing clinical practice requires an understanding of the influences on behaviour; therefore, our study was underpinned by the Theoretical Domains Framework (TDF) [17]. This theoretical framework was developed for implementation research to identify influences on HCP behaviour [17]. We used the 14-domain TDF (v2) (see Additional file 1: Appendix eTable 1). The first stage of TDF-based research is to select and specify the target behaviour(s) [17]. In our study, target behaviours were (i) identification and (ii) management of individuals’ needs post-TIA/ minor stroke. ‘Needs’ were informed by the literature and defined as: information provision (diagnosis and stroke risk); supporting stroke prevention (medication and lifestyle change); and addressing holistic needs (residual problems and return to work or usual activities).

Participants

Participants were HCPs who work with TIA or minor stroke patients, including: secondary care doctors, nurses or AHPs; primary care general practitioners [GPs]; and community care AHPs and nurses. Convenience and snowball sampling were used initially; however, sampling became increasingly purposeful to achieve variation in clinical role (doctor, nurse, AHP) and setting (primary, secondary, community care). Secondary care doctors, nurses and AHPs were recruited from three TIA clinics in the West Midlands (England). Community HCPs were recruited from Birmingham Community Healthcare Trust. GPs were recruited from two general practices in the West Midlands and through snowballing. A pragmatic approach to site selection was used whereby research invitations were sent to potential sites and those that responded first were selected. Recruitment rates (percentage of HCPs interviewed of those invited to participate) were: 86% (12/16) for secondary care, 60% (6/10) for community care and 43% (6/14) for GPs.

Data collection

One-to-one, semi-structured interviews were conducted by telephone or face-to-face (at the University of Birmingham or participants’ workplace). All interviews were conducted by GT, a female, non-medical researcher trained in qualitative research methods. All participants were interviewed once. The interviewer did not have a relationship with any of the participants.

Topic guides were informed by existing literature and consultation with the research team and patient partners, and refined through piloting with patient partners. Topic guides covered: follow-up pathways and communication between healthcare settings, and current practice to identify and address needs. Participants also completed a short demographic questionnaire. Fieldnotes were taken during and after each interview to add contextual information, and reflect on how the interview was conducted. Adjustments were made if necessary during the following interviews, thereby improving reflexivity and trustworthiness of the data.

Digital audio recorded interviews were transcribed verbatim by a professional transcription service. Interviews were conducted between March and November 2018, until the research team judged that the sample and data had sufficient depth and breadth to address the research questions.

Analysis

Computer Aided Qualitative Data Analysis Software (CAQDAS) QSR NVivo 12 supported the sorting, coding and organisation of transcribed data. A key advantage of using CAQDAS software is that it facilitates and enhances researcher reflexivity [18]. Transcripts were read several times to enable familiarisation with the interviews. Participant responses were deductively coded into relevant TDF domains. GT coded all transcripts and RA independently coded a subset (10%, n = 2). GT and RA are both experienced qualitative researchers. Responses coded in different domains were discussed by GT and RA to establish a consensus; all differences in coding were resolved. Themes were iteratively generated from coded data. Initial data coding and generation of themes was concurrent with the interviews and data collection stopped when no new themes were identified. Themes were identified initially by GT, reviewed by RA, and developed and refined by discussion between GT and RA. The wider research team and our patient partners met on a regular basis to discuss and further refine the themes.

Ethical approval and participants’ informed consent

Ethical approval was given by the Warwickshire North West - Greater Manchester East Research Ethics Committee (Reference: 17/NW/0737). Written or recorded verbal informed consent was obtained from the participants, by the interviewer, immediately prior to the interview. All methods were carried out in accordance with the UK Policy Framework for Health and Social Care Research and the Declaration of Helsinki.

Results

The final sample consisted of 24 HCPs (5 stroke doctors, 4 nurses, 9 AHPs and 6 GPs). Participants’ years of experience ranged from 3 to 37 (mean 15, standard deviation 9), characteristics are summarised in Table 1 and detailed in eTable 2 (see Additional file 1: Appendix). Mean interview length was 48 min (range 34 to 68 min).

Table 1 Characteristics of participants (n = 24)

Eleven TDF domains were identified as relevant: Environmental context and resources; Social influences; Knowledge; Intentions; Memory, attention and decision processes; Social/professional role and identity; Beliefs about capabilities; Beliefs about Consequences; Reinforcement; Skills; and Goals (Tables 2 and 4).

Table 2 Theoretical domains and sample quotes related to pathways and access to follow-up care

There were 3 overarching themes and 10 sub-themes:

  1. 1.

    Pathways and access to follow-up care (Lack of standardised follow-up care pathway; Interface between healthcare settings; quotes are provided in Table 2).

  2. 2.

    Identifying needs (Approach to identifying needs; Use of checklists and screening tools; Patient factors; quotes are provided in Table 3)

  3. 3.

    Addressing needs (Stroke prevention; Residual impairments; Education about diagnosis, stroke risk and medication; Use of support services and resources; Patient factors; quotes are provided in Table 4)

Table 3 Theoretical domains and sample quotes related to identifying needs
Table 4 Theoretical domains and sample quotes related to addressing needs

Themes and subthemes are described below and summarised in Tables 2 and 4 and Fig. 1.

Fig. 1
figure 1

Summary of themes and subthemes

Pathways and access to follow-up care

Lack of standardised follow-up care pathway

Specialist review in secondary care is rapid with patients leaving hospital within hours or days. Subsequent follow-up is limited with no standardised follow-up care pathway and variability in follow-up between and within healthcare settings (Environmental context and resources). For example, one hospital had a nurse-led follow-up clinic, but consultants within that hospital differed in whether they referred their patients there or not (Intentions); whereas, another hospital had no follow-up (Environmental context and resources). The eligibility criteria to access early supported discharge varied across regions; minor stroke patients “rarely” received early supported discharge and TIA patients were not eligible (Environmental context and resources). In primary care, there was a spectrum of active vs passive approaches to follow-up with some general practices actively contacting patients and others relying on patients to contact them (Intentions). GPs often relied on annual long-term condition reviews as follow-up for these patients (Environmental context and resources).

Interface between healthcare settings

Communication between healthcare settings was restricted. It was usually one way and comprised electronic or paper discharge letters which varied in the speed they were sent, the content, and how the recipient HCP engaged with the letter (Environmental context and resources/ Intentions). Some GPs described frustration with the lack of access to results of imaging/ investigations and difficulty in contacting stroke consultants for specialist advice (Environmental context and resources/ Social influences).

Identifying needs

Approaches to identifying needs

HCPs’ perceived role in follow-up care (Social professional role and identity) and knowledge of potential patients’ needs (Knowledge) influenced their approach to identifying needs. Consultants mostly considered the purpose of their follow-up clinics to be related to the acute management of TIA/ minor stroke, in particular interpreting and actioning imaging and investigations (Goal). For GPs, follow-up was predominantly focused on stroke prevention medication and risk factor management, such as blood pressure control (Goal). GPs and consultants were usually passive and relied on patients to raise issues themselves (Intentions/ Social influences). In contrast, nurses and AHPs took an active approach to identifying needs (Social professional role and identity/ Intentions). In general, nurses and AHPs had a more holistic understanding of potential needs and were confident in their ability to identify needs (Knowledge/ Beliefs about capabilities).

Overall, there was a lack of knowledge and understanding of sequelae post-TIA/ minor stroke, particularly amongst consultants and GPs who often viewed TIA/ minor stroke as transient events (Knowledge). Knowledge of residual impairments post-TIA/ minor stroke was gained through experience of following-up these patients (Knowledge) or, less commonly, through personal experience with family members (Social influences).

Use of checklists and screening tools

Checklists, usually developed in-house, were commonly used by nurses and AHPs and considered useful prompts (Environmental context and resources/ Beliefs about consequences). However, checklists were less commonly used by experienced nurses and AHPs who referred to using “instinct” to identify needs, gained through professional experience working in the field (Skill). In primary care, a long-term conditions template is used by nurses at annual reviews. However, the content was medically focused and influenced by a performance-based incentive: the Quality and Outcomes Framework (QOF) (Reinforcement).

AHPs varied considerably in their use of screening tools, if at all (Environmental context and resources). When used, screening tools informed decision making, such as psychology referral (Memory, attention and decision processes). In one early supported discharge team, the Barthel index was mandated by the local service commissioners (Reinforcement); however, this tool was not considered useful by AHPs (Beliefs about consequences). Screening tools were rarely used by GPs and consultants. Barriers to use of screening tools included lack of knowledge of available tools (Knowledge), lack of training to used and interpret tools (Skills) and lack of time (Environmental context and resources).

Patient factors

Culture and language were sometimes barriers to identifying needs (Social influences). There was a perception that patients do not want to raise non-medical or minor issues with doctors, but are more willing to discuss these problems with nurses and AHPs (Social influences). It was perceived that some patients withheld information due to embarrassment, not wanting to admit to problems for fear of consequences, such as driving restrictions (Social influences).

Family members facilitated identification of needs, in particular, women raised issues on behalf of their male partners (Social influences). On occasion, family members acted as translators (Social influences). However, in some instances, presence of family could be a barrier if patients were embarrassed to discuss problems in front of them (Social influences).

Addressing needs

Stroke prevention

There was disparity between consultants and GPs regarding perceived responsibility for prescribing stroke prevention medication (Social professional role and identity). Some consultants considered this to be part of their role (Social professional role and identity), but varied in tailored versus protocolised approaches to prescribing (Intentions). In contrast, other consultants were less confident prescribers and relied on GPs (Beliefs about capabilities/ Intentions). Some GPs perceived preventative medicine as a strength of general practice and believed prescribing medication was their role, particularly in the context of comorbidities and polypharmacy (Social professional role and identity/ Goal). However, other GPs felt they lacked specialist stroke knowledge and relied on stroke consultants (Belief about capabilities/ Social influences). This influenced whether GPs actively saw patients and reviewed their medication or simply issued repeat prescriptions based on secondary care recommendations (Intentions).

Although HCPs recognised the importance of lifestyle change for stroke prevention (Beliefs about consequences), this was rarely addressed in a meaningful way or actively supported (Intentions). Time constraints were a key barrier (Environmental context and resources); however, behaviours were also influenced by lifestyle change not being considered a key goal of their follow-up (Goal/ Social professional role and identity) and lack of knowledge of support services and resources to support lifestyle change (Knowledge). As a substitute, HCPs used information leaflets and consultants made recommendations to GPs through discharge letters (Environmental context and resources).

Residual impairments

Consultants rarely addressed residual problems, such as fatigue, psychological and cognitive problems, due to lack of knowledge of potential problems and lack of confidence in how to address these problems (Knowledge/ Beliefs about capabilities). Although most GPs lacked understanding of residual problems related to TIA and minor stroke, they were aware of holistic consequences from long-term conditions in general (Knowledge); however, restricted time (typically within 10-min appointments) and prioritisation of stroke prevention – partly influenced by performance based financial incentives (QOF) – were commonly cited as reasons for not addressing these issues (Environmental context and resources/ Intentions/ Reinforcement).

AHPs and nurses considered addressing holistic needs part their role and were confident in their ability to address residual needs (Social professional role and identity/ Beliefs about capabilities). Often AHPs and nurses had the skills to actively addressed residual needs, such fatigue management, and tailored their approach to patients’ demographic traits and personal circumstances (Skill/ Memory attention and decision processes). Many AHPs and nurses also believed in the value of a “supportive chat” which involved active listening, acknowledging patients’ needs and reassurance (Beliefs about consequences) and recognised the importance of lay language (Skill).

Education about diagnosis, stroke risk and medication

Consultants usually provided information on diagnosis and stroke risk (Intentions); however, this was not comprehensive and there was belief that it is difficult for patients to retain information provided at the acute stage (Beliefs about consequences). Most GPs did not routinely provide education due to time constraints and an assumption that this had been done in secondary care (Environmental context and resources/ Social professional role and identity). Most nurses and AHPs actively provided education and considered this part of their role (Intentions/ Social professional role and identity). They often used stroke charity websites to supplement verbal information (Environmental context and resources).

Use of support services and resources

Support services were mentioned as potential sources of support, both formal healthcare services, such as smoking cessation and talking therapy, and local community groups (Environmental context and resources). However, barriers to accessing services were reported, including a lack of services, long wait times to access services, lengthy or complicated referral processes, transport issues, and geographical boundaries (Environmental context and resources).

Another important barrier was lack of knowledge of services, particularly as they changed rapidly (Knowledge). In-house directories were sometimes used in primary and community care; however, directories were often outdated unless someone was delegated to regularly update them (Environmental context and resources). In early supported discharge teams, knowledge of support services was facilitated by multidisciplinary team working, building relationships in the community and experience of working in the area (Knowledge). AHPs also proactively searched for services to meet specific patient needs (Memory, attention and decision processes). In primary care, GPs having access to social prescribers or community champions facilitated identification of support services (Environmental context and resources).

Patient factors

Patient factors were sometimes barriers to addressing needs, including patients refusing referral to support services, denial, low education, IT illiteracy and comorbidities (Social influences). Family members were often facilitators and supported patients to find or access services, access the internet or computers, relaying or repeating information (Social influences).

Discussion

There is no clear pathway for supporting people with TIA or minor stroke after rapid specialist review in hospital. Consequently, these patients have limited access to HCPs from all settings. HCPs’ approaches to identifying and addressing needs are predominantly influenced by their professional training, perceived role and purpose of their clinic, knowledge of potential needs, and time constraints. In general, consultants and GPs are medically focused; whereas, nurses and AHPs are more holistic in their approach to follow-up care. However, TIA/ minor stroke patients are unlikely to receive follow-up from nurses and AHPs.

Comparison with other studies

This is the first study to explore perceived influences on HCPs’ behaviours related to follow-up care post-TIA/minor stroke, specifically identification and management of patients’ needs. In stroke research, HCPs’ perceived roles and beliefs about consequences have been found to influence rehabilitation assessment and referral practices on Australian acute stroke units [19]. Similarly, in primary care, research shows disparity in GPs’ perception of their role in cardiovascular disease prevention, in particular lifestyle advice, and patient factors were important influences on GPs actions [20, 21]. We identified sub-optimal and variable interface communication between healthcare settings, which is supported by other stroke research [22]..

Lack of adequate follow-up is reflected in studies exploring perspectives of follow up from people with TIA and minor stroke, which found these individuals feel abandoned post-discharge [5]; frustrated due to lack of recognition of problems from HCP [23]; and dissatisfied with the lack of communication [24], holistic care [25], rehabilitation options [10], and individualised information and support [24]. Knowledge of stroke and medication has been identified as a barrier to secondary stroke prevention medication adherence; therefore, inadequate follow-up care adversely affects both patients satisfaction with care and clinical outcomes [26]..

Implications for clinicians and policy makers

Research has shown that structured stroke care at the post-acute stage is essential to improve secondary prevention post-stroke [27,28,29,30]. However, holistic care should also incorporate management of residual problems and education about diagnosis and stroke risk. There is no clear follow-up pathway to support people after TIA/ minor stroke and HCPs have disparate views on their responsibility and role in follow-up, which may mean patients slip through the net and receive no follow-up. We have identified factors that influence HCPs actions related to follow-up care post-TIA/ minor stroke which can help inform guidelines to improve healthcare for these patients. A key recommendation is to develop a structured follow-up pathway which incorporates specialist stroke care from consultants, holistic care from stroke nurses/ AHPs and long-term care from primary care GPs/ nurses. HCPs roles within this pathway should be clearly defined (Social professional role and identity) to influence their Intentions and Goals.

Future research

Identification and management of needs post-TIA/minor stroke is currently sub-optimal. Through identifying TDF domains relevant these behaviours, our findings provide an understanding of what needs to change to improve follow-up post-TIA/minor stroke and potential intervention targets. Future research should use this knowledge to inform intervention development. The Behaviour Change Wheel [31], a framework for behaviour change intervention design, can be used to systematically link the relevant TDF domains to ‘intervention functions’. For example, the TDF domain ‘knowledge’ (lack of knowledge of TIA/minor stroke patients’ needs) maps to the intervention function ‘education’. Multiple intervention functions can be included in a complex intervention to change HCPs’ behaviour. Previous follow-up interventions post-TIA/minor stroke have focused on secondary prevention medication and lifestyle change [28]; however, it is important for future interventions to address holistic needs [5].

Strengths and limitations

A strength of our study is that we drew upon a wide range of HCPs experiences across different healthcare settings and disciplines. These different perspectives enriched our understanding of the diverse range factors influencing follow-up care across different settings. Through use of TDF, we used behavioural theory to identify influences on behaviour (i.e. identifying and addressing needs post-TIA/ minor stroke), which are potentially amenable to change and could be targeted to improve care. An advantage of TDF is that it links to the Behaviour Change Wheel which provides a methodology for progressing to developing behaviour change intervention [17]. However, a limitation of collecting TDF data though interview is that we can only describe participants’ reported influences on care after TIA and minor stroke and such perceptions do not necessarily fully reflect actual influences. A limitation of our study is that, for pragmatic reasons, only a subset of transcripts were double coded. Although it was not the purpose of our study to be generalisable, we only sampled participants from the West Midlands. Therefore, future research could explore if our findings are consistent across other geographical locations.

Conclusion

Following rapid discharge from hospital, people with TIA or minor stroke have limited access to follow-up care and care they do receive is inadequate. Through identifying factors which influence follow-up care of these patients, we can inform guidelines and practical strategies to improve holistic healthcare post-TIA and minor stroke.

Availability of data and materials

The datasets used and/or analysed during the current study available from the corresponding author on reasonable request.

Abbreviations

AHP:

Allied health professionals

GPs:

General practitioners

HCP:

Healthcare providers

TDF:

Theoretical Domains Framework

TIA:

Transient ischaemic attack

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Acknowledgements

Thank you to our patient partners who provided extremely valuable feedback and insight into the study design and interpretation of results. We thank also all participants who contributed to this study.

Funding

GT is funded by a National Institute for Health Research (NIHR) Postdoctoral Fellowship Award. This article/paper/report presents independent research funded by the NIHR (and Health Education England if applicable). MC receives funding from the NIHR Birmingham Biomedical Research Centre, NIHR Surgical Reconstruction and Microbiology Research Centre at the University Hospitals Birmingham NHS Foundation Trust and the University of Birmingham, Health Data Research UK, Innovate UK and Macmillan Cancer Support. JM is an NIHR Senior Investigator. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

The funding bodies played no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript.

Author information

Authors and Affiliations

Authors

Contributions

GMT, MC, JM, RF and LA contributed to the study conception and design. GMT conducted the interviews and data were analysed by GMT and RA. GMT, RA, MC, JM, RF and LA were involved in the interpretation of results. GMT drafted the manuscript and RA, MC, JM, RF and LA provided feedback. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Grace M. Turner.

Ethics declarations

Ethics approval and informed consent to participate

Ethical approval was given by the Warwickshire North West - Greater Manchester East Research Ethics Committee (Reference: 17/NW/0737). Written or recorded verbal informed consent was obtained from the participants, by the interviewer, immediately prior to the interview.

Consent for publication

Not applicable.

Competing interests

MC is a National Institute for Health Research (NIHR) Senior Investigator and receives funding from the National Institute for Health Research (NIHR) Birmingham Biomedical Research Centre, the NIHR Surgical Reconstruction and Microbiology Research Centre and NIHR ARC West Midlands at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, UKRI, Health Data Research UK, Innovate UK (part of UK Research and Innovation), Macmillan Cancer Support, UCB Pharma and GSK. MC has received personal fees from Astellas, Takeda, Merck, Daiichi Sankyo, Glaukos, GSK and the Patient-Centered Outcomes Research Institute (PCORI) outside the submitted work. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. GMT, RA, RF, JM and LA declare no conflict of interest.

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Supplementary Information

Additional file 1: eTable 1

. Theoretical Domains Framework (TDF) version 2. eTable 2. Characteristics of healthcare provider participants.

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Turner, G.M., Aquino, M.R.J.V., Atkins, L. et al. Factors influencing follow-up care post-TIA and minor stroke: a qualitative study using the theoretical domains framework. BMC Health Serv Res 22, 235 (2022). https://doi.org/10.1186/s12913-022-07607-0

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Keywords

  • Transient ischaemic attack
  • TIA
  • Minor stroke
  • Follow-up
  • Theoretical domains framework