Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.
Methods and Findings
The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.
Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
Systematic Review Registration
International Prospective Register of Systematic Reviews CRD42011001123
Please see later in the article for the Editors' Summary
Every year, 15 million people have a stroke. About 5 million of these people die within a few days, and another 5 million are left disabled. Stroke occurs when the blood supply of the brain is suddenly interrupted by a blood vessel in the brain being blocked by a blood clot (ischemic stroke) or bursting (hemorrhagic stroke). Deprived of the oxygen normally carried to them by the blood, the brain cells near the blockage die. The symptoms of stroke depend on which part of the brain is damaged but include sudden weakness or paralysis along one side of the body, vision loss in one or both eyes, and confusion or trouble speaking or understanding speech. Anyone experiencing these symptoms should seek immediate medical attention because prompt treatment can limit the damage to the brain. In the longer term, post-stroke rehabilitation can help individuals overcome the physical disabilities caused by stroke, and drugs that thin the blood, reduce blood pressure and reduce cholesterol (major risk factors for stroke) alongside behavioral counseling can reduce the risk of a second stroke.
Why Was This Study Done?
Treatment for, and rehabilitation from, stroke is a lengthy process that requires considerable personal investment from the patient. The term “treatment burden” describes the self-care practices that patients with stroke and other chronic diseases must perform to follow the complicated management strategies that have been developed for these conditions. Unfortunately, treatment burden can overwhelm patients. They may be unable to cope with the multiple demands placed on them by health-care providers and systems for their self-care, a situation that leads to poor adherence to therapies and poor outcomes. For example, patients may find it hard to complete all the exercises designed to help them regain full movement of their limbs after a stroke. Treatment burden has been poorly examined in relation to stroke. Here, the researchers identify and describe the treatment burden in stroke by undertaking a systematic review (a study that uses predefined criteria to identify all the literature on a given topic) of qualitative studies on the patient experience of stroke management. Qualitative studies collect non-quantitative data so, for example, a qualitative study on stroke treatment might ask people how the treatment made them feel whereas a quantitative study might compare clinical outcomes between those receiving and not receiving the treatment.
What Did the Researchers Do and Find?
The researchers identified 69 qualitative studies dealing with the experiences of stroke management of adult patients and analyzed the data in these papers using framework synthesis—an approach that divides data into thematic categories. Specifically, the researchers used a coding framework informed by normalization process theory, a sociological theory of the implementation, embedding and integration of tasks and practices; embedding is the process of making tasks and practices a routine part of everyday life and integration refers to sustaining these embedded practices. The researchers identified four main areas of treatment burden for stroke: making sense of stroke management and planning care; interacting with others, including health care professionals, family and other patients with stroke; enacting management strategies (including enduring institutional admissions, managing stroke in the community, reintegrating into society and adjusting to life after stroke); and reflecting on management to make decisions about self-care. Moreover, they identified problems in all these areas, including inadequate provision of information, poor communication with health-care providers, and unsatisfactory inpatient care.
What Do These Findings Mean?
These findings show that stroke management is extremely demanding for patients and is influenced by both the micro and macro organization of health services. At the micro organizational level, fragmented care and poor communication between patients and clinicians and between health-care providers can mean patients are ill equipped to organize their care and develop coping strategies, which makes adherence to management strategies less likely. At the macro organizational level, it can be hard for patients to obtain the practical and financial help they need to manage their stroke in the community. Overall, these findings suggest that care provision for stroke needs to be transformed so that the needs of patients rather than the needs of health-care systems are prioritized. Further work is required, however, to understand how the patient experience of treatment burden is affected by the clinical characteristics of stroke, by disability level, and by other co-existing diseases. By undertaking such work, it should be possible to generate a patient-reported outcome measure of treatment burden that, if used by policy makers and health-care providers, has the potential to improve the quality of stroke care.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001473.
- The US National Institute of Neurological Disorders and Stroke provides information about all aspects of stroke (in English and Spanish); its Know Stroke site provides educational materials about stroke prevention, treatment, and rehabilitation including personal stories (in English and Spanish); the US National Institutes of Health SeniorHealth website has additional information about stroke
- The Internet Stroke Center provides detailed information about stroke for patients, families, and health professionals (in English and Spanish)
- The UK National Health Service Choices website also provides information about stroke for patients and their families, including personal stories
- MedlinePlus has links to additional resources about stroke (in English and Spanish)
- The UK not-for-profit website Healthtalkonline provides personal stories about stroke
- Wikipedia provides information on the burden of treatment and on the normalization process theory (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
Citation: Gallacher K, Morrison D, Jani B, Macdonald S, May CR, et al. (2013) Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research. PLoS Med 10(6): e1001473. doi:10.1371/journal.pmed.1001473
Academic Editor: Janet Parsons, St. Michael's Hospital, Canada
Received: November 29, 2012; Accepted: May 9, 2013; Published: June 25, 2013
Copyright: © 2013 Gallacher et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Funding: This study was funded by the Chief Scientist Office http://www.cso.scot.nhs.uk/ CAF/10/03. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: DTE is currently receiving federal funding from the U.S. National Institutes of Health (National Institute of Nursing Research) to conduct research on the burden of treatment concept. Grant number: 1R21NR012984-01A1. FSM and CRM have also received funding from the ESRC previously to help develop a NPT web enabled toolkit. All other authors have declared that no competing interests exist.
Abbreviations: NPT, Normalization Process Theory
The Concept of Treatment Burden
‘Treatment burden’ is a novel concept describing the self-care practices that patients with chronic disease must perform to enact management strategies and respond to the demands of health care providers and systems. Individuals will vary in their capacity to accommodate and enact such practices, which may have a marked impact on patient functioning and well-being –, and on adherence to management plans –. Nonadherence to management strategies by patients with chronic disease is a global health problem  and has the potential to lead to negative outcomes for patients such as increased morbidity and wasted expenditure for health care systems ,. There is growing interest in the concept of treatment burden internationally –, and it has been hypothesized that treatment burden can overwhelm patients, exceeding their coping threshold and leading to poor adherence to therapies ,,. Coping thresholds are likely to vary substantially between patients, depending on environmental factors such as social support and financial constraints ,,, and on internal factors such as health literacy and resilience ,.
There has recently been a growing interest in the development of a patient-reported outcome measure of treatment burden in chronic disease, to be utilised by health care providers alongside consideration of patient capacity ,. It is well documented that the initial steps of development of such a measure are to explore the patient experience through qualitative methods . This review explores the features of treatment burden in one chronic disease, stroke, but we expect many of the key concepts identified would be generic and relevant to those with other chronic diseases and multimorbidity .
Treatment Burden in Stroke
Cerebrovascular disease (stroke) is the leading cause of long-term disability in both the UK and the US ,. Global projections to the year 2020 indicate that this disease burden will increase, in both westernised and resource-poor countries . It is well documented that treatment for, and rehabilitation from, stroke can be an extended, arduous process, demanding significant personal investment from the patient ,.
There is a significant evidence base to support both rehabilitative and secondary preventative therapies in stroke ,, but to optimise effectiveness, the issue of nonadherence, and therefore treatment burden, must be addressed. Treatment burden has not been well examined in relation to stroke. Previous syntheses of qualitative studies in stroke have focussed either on the patient experience of illness rather than treatments ,, or on the experience of informal carers ,. A few syntheses have explored the patient experience of stroke treatments, but these have concentrated either on one specific aspect of the management process – or specifically on the interaction between patient and health care providers –. One synthesis systematically reviewed all qualitative studies of stroke  including papers that examined the experience of patients, informal carers, and health professionals, but did not examine the issue of treatment burden. This systematic review therefore seeks to explore the qualitative literature on the patient experience of stroke management with the aim of identifying and describing treatment burden, in order to determine whether treatment burden is an important issue in the context of stroke care. To the best of our knowledge, this is the first such systematic review of qualitative studies of treatment burden in stroke.
A protocol was created and the review registered on PROSPERO, the International Prospective Register of Systematic Reviews (CRD42011001123, http://www.crd.york.ac.uk/NIHR_PROSPERO/display_record.asp?ID=CRD42011001123).
The review methods have been described in detail elsewhere . A comprehensive search strategy was used to identify qualitative studies seeking to understand the adult patient experience of stroke management. Limitations of English language, year of publication 2000 onwards, and publication in a peer reviewed journal were set. The English language restriction was due to a lack of funding for translation. The year of publication 2000 onwards was chosen to ensure that we collected information about current, rather than historical, patient care. A formal database search strategy using a combination of free text search terms and subject headings was created in consultation with an information scientist; this is shown in Text S1 . Databases searched were Scopus, CINAHL, Embase, Medline, and PsycINFO. The search centred around four main concepts: stroke, treatment burden, patient experience, and qualitative methods. Reference, footnote, and citation tracking were also undertaken. Initially, the search was carried out to include literature published up until March 2011 , and this was then subsequently updated to February 2013.
We included qualitative studies that explored the adult patient experience of stroke management in any setting (e.g., primary care, secondary care, outpatient, nursing home) and provided information on treatment burden. Full details of inclusion and exclusion criteria for papers are shown in Table S1 and are discussed in detail elsewhere .
Data Screening, Extraction, and Analysis
Title, abstract and full paper screening, data extraction and analysis were undertaken by two individuals with a third party involved for any disagreements. Data extracted for analysis were limited to those describing a range of treatment burdens and to author comments rather than primary data or verbatim quotes. Details of the data extraction instruments developed and used are published elsewhere . Data were analysed using framework synthesis , under a coding framework informed by Normalization Process Theory (NPT) . NPT is a robust analytic framework for understanding the organisation and operationalisation of tasks or practices (their implementation), of making them routine elements of everyday life (their embedding), and of sustaining embedded practices in their social contexts (their integration) –. As we are conceptualising treatment burden as a set of practices performed by patients during their chronic disease management that must be implemented, embedded, and sustained in the patient's life, we thought this to be a suitable framework for analysis. NPT has been shown to effectively conceptualise the practices involved for patients during their sickness careers , and we have recently shown it to be effective in understanding the treatment burden experienced by chronic heart failure patients ,. NPT was chosen over a stroke-specific conceptual framework as this enables the possibility of future comparisons between the experiences across a range of chronic diseases and multimorbidity.
During data analysis, data on treatment burden were extracted from the authors' results and discussion sections; each item was then coded independently by two researchers using the coding framework underpinned by NPT (Table S2). This was adapted and refined during data analysis. A careful note was made of any treatment burden that fell outside the coding framework, in order to assess if the framework was ‘fit for purpose’. The data, organised into framework codes, were then examined by the primary researcher, and themes created within and between codes by looking for regularities, irregularities, and relationships between components. As it was felt that data saturation had been reached through our initial search to 2011 which identified 54 papers, for papers identified in our update search to February 2013 one researcher read through the results and discussion sections of each paper and noted any new themes that arose.
A pragmatic approach was then taken to further analyse and reorganise themes into a taxonomy of treatment burden under headings that reflect different processes of stroke care. Themes were then examined in relation to our theoretical framework in order to develop a robust conceptual model of treatment burden in stroke. Several meetings were held between researchers to discuss the emergence of themes and the creation of the taxonomy and conceptual model. We then examined this taxonomy and conceptual model and noted any relationships between components or apparent causal processes, in order to make suggestions for future areas of research or improvements to health service delivery .
Quality appraisal was based upon published guidance by well-known qualitative researchers . The criteria used are shown in Table 1 and detailed elsewhere . Two researchers independently carried out quality appraisal and answers were compared and discussed. Papers were not excluded based on quality appraisal because: (1) our aim was to develop as comprehensive a taxonomy of treatment burden as possible and we intended to minimise the risk of missing any key concepts; and (2) there is currently no consensus on the best way to appraise the quality of qualitative research for inclusion in systematic reviews .
In total, 5,892 papers were identified, and 69 subsequently met our inclusion criteria. Figure 1 demonstrates the inclusion and exclusion of papers at each stage of the screening process.
Inclusions and exclusions are shown at each stage.
None of the included studies stated the investigation of treatment burden as a research objective, but all contained substantial amounts of information on treatment burden in the results or discussion section . Research objectives were noted to vary considerably between studies; to demonstrate this we have broadly categorised papers into the following areas of research (Tables S3 and S4): recovering from stroke, the interaction between patient and health services, return to work/retirement, nursing home experience, coping strategies, living with aphasia, physiotherapy/exercise, motivation/hope in recovery, reintegration into the patient's lifeworld and community, gender differences, the patient's interpretation, returning to driving, multimorbidity, using a wheelchair, eating difficulties, goal setting, and medications. This wide range of categories demonstrates the heterogeneity of included papers.
Key descriptive information of included papers is as follows. Country of study: Sweden (n=19) –; UK (n=12) ,–; Canada (n=11) –; Australia (n=10) –; US (n=5) –; Norway (n=3) –; Netherlands (n=3) –; New Zealand (n=2) ,; Iran (n=1) ; Republic of Ireland (n=1) ; Nigeria (n=1) ; and China (n=1) . Participant numbers ranged from 1 to 113. Settings of studies: community (n=34) ,,–,,,,,,,,,,–,–,,–,,,–,; outpatient (n=5) ,,,,; care homes (n=3) –; hospital (n=6) ,,,,,; stroke units (n=8) ,,,,,,,; stroke medical centre (n=1) ; and mixed setting such as hospital and community (n=12) ,,,,,,,,,,,. Gender of participants: males and females (n=56) ,,,–,,,–,,,,–,,,–,–,–,–,; male only (n=6) ,,,,,; female only (n=2) ,; unclear (n=5) ,,,,. Ages of participants ranged from 22 to 100 years; this was unreported in a few studies (n=7) ,,,,,,. Time since stroke (n=41) ,,–,–,–,,–,–,–,–,,–,,,,– ranged from under 2 weeks to 16 years. Disability since stroke (n=39) ,–,,,,,–,,,,–,,–,,,,,–,,–,,– was very variable. Ethnicity, when reported (n=13), varied between studies ,,,,,,,,,,,,. Co-morbidities were seldom mentioned (n=11) ,,,,,,,,,, nor were medications (n=3) ,,. Qualitative data gathering methods: interviews (n=63),–,–,–,,–; focus groups (n=4) ,,,; interviews and focus groups (n=2) ,; additional field notes (n=5) ,,,,; additional patient observation (n=1) . Data analysis: a variety of qualitative methods were used, and all sought to identify common themes raised by participants (details are described in Table S4). In one study, method of data analysis was not clear (n=1) . Inclusion and exclusion criteria, summary of findings, and study limitations are described in Table S4.
A summary of the quality appraisal of included studies is shown in Table 1. Papers were generally of a reasonable quality, and aspects of quality that were most poorly demonstrated included acknowledgment of the researchers' influence on the analysis and any note of conflicts of interest.
We identified four main areas of treatment burden from the literature: (1) making sense of stroke management and planning care; (2) interacting with others, including health professionals, family, and other stroke patients; (3) enacting management strategies, which includes (a) enduring institutional admissions, (b) managing stroke in the community, (c) reintegrating into society, and (d) adjusting to life after stroke; and (4) reflecting on management. Figure 2 shows a conceptual model of stroke treatment burden. A full taxonomy of treatment burden is shown in Table 2, and a longer version including quotations from included papers is shown in Table S5. No treatment burden was identified that fell outside our coding framework.
The arrows represent the possible pathways between components that stroke patients may follow. The ‘enacting management strategies’ component has four subcomponents.
1) Making sense of stroke management and planning care.
During the management of their stroke, patients are required to comprehend a large amount of information ,,,,,,. This is an aspect of treatment burden that commonly arises in the literature. Even before diagnosis has been achieved, patients assess symptoms and make decisions about seeking help ,. They subsequently learn about their diagnosis of stroke, investigations, acute interventions, medications, and risk factor modification ,,,.
Patients report that they frequently encounter barriers to receiving information from health services in that the provision of information is lacking, inadequate time is allocated, timing is inappropriate, or information is given in a form that is incomprehensible ,,,,,,,–,. One study reports that when asked about their stroke, women are more likely to describe poor information provision from medical staff . Family education also appears to be insufficient, with patients describing how they researched information on behalf of their caregivers due to a lack of available information from health services . The following quotation demonstrates environmental factors described by patients that can prevent the adequate exchange of information:
(Environmental or contextual) characteristics that resulted in shorter interaction time were the presence of other health professionals or significant others in the room, competing needs of another patient, and health professionals being called away. 
Patients also reported that access to information following the consultation is insufficient , resulting in the need for them to spend time seeking information themselves ,,,, and attempting to make personal sense of the array of changes that are occurring in their lives ,,,,,,,,.
Patients often have multiple health care providers, as they interact with a variety of services including health and social care. They describe it as challenging to make sense of and to differentiate between the roles of different individuals and services, for example whom to contact for advice once discharged from hospital ,,,. A lack of continuity of care for patients and poor communication between services can result in patients receiving conflicting information from different parties, making it harder to understand the necessary processes that promote recovery ,,,,,:
A few low motivation patients described some of the stroke unit professionals as giving out unhelpful “mixed messages.” One patient reported that physiotherapists encouraged her to work at rehabilitation. On returning to the ward, however, she thought the nurses discouraged such effort by putting her to bed. This resulted in confusion regarding the correct way to behave. 
Several investigators describe the cognitive processing that patients carry out when managing their stroke. They carefully plan their care, make calculated decisions about their contribution to management, prioritise treatments, and set goals for recovery ,,,,,–,,–,,,–,,. Personal goals appear to commonly be focussed on reaching a former social status or role within the family ,,,,. One study reports that goal setting varies between men and women, with women focussing on resuming tasks within the home and men concentrating on the accomplishment of tasks outside the home environment . Many patients describe a lack of support from health services for this stage and therefore take responsibility and initiative for their own care, drawing on former life skills to plan and organise their recovery ,,,,.
Patients develop expectations of themselves and their health care providers and work at maintaining motivation during the long recovery process ,,,,,. They slowly learn to cope with uncertainty during recovery , and problem solve as the need arises ,. Stroke patients report experiencing emotions associated with stroke management such as frustration at time being taken up by management strategies  and guilt at decisions made, for example planning for extended periods of rest during the day ,,. They develop coping strategies to manage emotion such as the use of relaxation techniques, humour, reasoning, positivity, waiting, altruism, and engaging in meaningful activities that give pleasure ,,,,,,,,,,,,,. Some use spirituality and faith as a method of coping ,,,,,.
2) Interacting with others.
Along with making sense of stroke and its management, much effort is allocated to engaging with a range of health professionals both in hospital and in the community for emotional support and practical help ,,,,,,,,,,,. One study reports that women are more likely to describe the formation of an alliance with health care assistants on the ward, whist men form alliances with nurses and therapists or other patients . Some patients describe turning to health professionals to validate treatments as appropriate and worthwhile , allowing them to take a paternalistic role by relying on their expertise ,,,,. Others complain about paternalistic care and spend time negotiating with health professionals, preferring a more equal relationship ,,,. In one study, men more frequently report trying to exert influence over their care, with women taking a more passive role . Whatever the patient preference, the literature suggests that patients are not adequately consulted about their desires to be involved in decisions about care or about their treatment priorities and goals, and this, along with a lack of information provision, can result in a mismatch in ideas between patients and therapists, leading to frustration for patients ,,,,,,:
All participants with aphasia naturally spoke of the importance of recovering their communicative function. They described intense feelings of frustration, hopelessness, isolation, and depression at not being able to talk. Many stressed that the aphasia was often of higher priority to them than their physical impairments which contrasted with health care systems' focus on physical recovery. 
Many patients report dissatisfaction in their contact with health professionals, complaining of misdiagnosis at initial presentation of stroke  and a lack of time and empathy from therapists ,,,,,,,,,,,. It appears that poor interactions between patients and health professionals interferes with the development of trusting relationships, which in turn worsens communication and prevents patients gaining the knowledge they need for the recovery process ,,,,. It is perhaps not surprising that communication difficulties with health professionals are a particular issue for aphasic patients ,, as the following excerpt illustrates:
However, he described with contempt how he initially after the stroke had been observed by his therapists. He demanded to be met through dialogues that gave him relevant conversation, support and stimulation. Certainly, he understood the professionals' way of working, but he found it could be done in a more conversational and descriptive way that involved him as a person. The dialogues with professionals should involve him in what was going to happen in spite of his incapability to understand all that was said. 
Patients arrange social care ,, and describe relying heavily on family members for emotional and practical support when managing their stroke ,,,,,,,,,,,–,,–,,,; one study suggests this is particularly the case for women . Aphasic patients describe using carers to help them with their communication ,. Such reliance on others can put a strain on relationships as family and friends display overprotection, paternalism, and a lack of understanding about management strategies, and patients experience feelings of guilt about dependency ,,–,,,,,,,,. Patients describe attempting to protect family from any carer burdens that they may face, for example by arranging respite care ,.
Patients report developing relationships with fellow patients and support groups who provide them with moral support ,,,,,,,,, and whom they compare themselves to in order to gauge recovery or validate treatments ,,,,,,,,–,,. Two papers report that younger, less disabled stroke patients feel uncomfortable attending therapies and support groups alongside older, more disabled patients to whom they struggle to relate ,. Lastly, enduring stigmatization from others due to the management of disabilities such as the use of a wheelchair or adapted cutlery was reported as a significant treatment burden by patients ,,,,,,,.
3) Enacting management strategies.
Enacting work takes many forms and includes the work of enduring institutional admissions, managing stroke in the community, reintegrating into society, and adjusting to life after stroke. We now describe each of these in turn.
3a) Institutional admissions.
Stroke patients undergo admission to hospital for acute care ,, then undertake extensive inpatient rehabilitation, attending therapists, taking medications, and working arduously to regain lost functions ,,,,,,,,:
During initial rehabilitation, the major focus is put on regaining the lost functions. The days are structured around training sessions, be they physical therapy, occupational therapy, speech therapy or ADL training. 
During the rehabilitation process they adjust to their new physical abilities and learn self-care practices to prepare for discharge ,,,. They may then be admitted to a care home if discharge into their own home is not feasible ,. Patients are required to fit into the routines set by institutions ,, and many describe enduring negative environmental circumstances such as unfamiliarity with various gadgets, long waiting times for personal care, inadequate support during mealtimes from staff, poor quality of hospital food, a lack of stimulating activities, and the loss of autonomy, privacy, and dignity whilst on the ward ,,,,,. These complaints were similar in the hospital and nursing home setting, with a particular complaint in nursing homes being a lack of autonomy, with care that is regarded as too paternalistic ,:
Care routines, no privacy, time constraints, and lack of familiar activities to perform limit autonomy. 
Patients may receive personal care from hospital staff whilst on the ward, and men report finding this harder to endure than women, describing a feeling of vulnerability. They develop strategies to cope with the situation :
Men showed vulnerability. They wished to manage by themselves and felt vulnerable when they had to rely on nursing care that involved bodily care. They seemed to have various strategies for dealing with this situation: to accept it or to take command and say how they wanted to be treated. Men described embarrassment at being naked in front of nurses, and also that nurses were sometimes shy of their nude bodies. By conforming to the role of patient the tension could be eased. 
3b) Managing stroke in the community.
The transition from inpatient care to the home is an important and often challenging time for patients ,,. Generally, patients report discharge services as poorly co-ordinated, badly managed, and inadequate for preparing patients for life back in the community ,,,,,,,. Papers from a variety of countries and health care systems describe it as difficult for patients to gain access to advice and services once discharged into the community ,,–,,:
One man, who was scared because he suffered a lot from unexpected bodily reactions, wanted to get into contact with his doctor…. He coped with his agony on his own, but he felt abandoned and frustrated. Later on he made the point that attitudes towards handicapped people had changed in general…. He found that he had to struggle with his training and worked at rehabilitation more or less on his own. 
One study carried out in Nigeria reported that even physiotherapy services paid for by patients have inadequate equipment available . Another paper from Canada describes how level of disability affects availability of certain services:
Although community gyms denied required help for the moderately disabled Mrs C, her impairments were not considered severe enough to qualify for the gym that (severely disabled) Mrs J was able to access. It was difficult for the participants to determine what criteria were in place in each situation and institution. They often learned what disability level qualified them for services in particular settings by trial and error. 
Once home, patients follow routines and integrate management strategies into their everyday lives, for example changing their diet, incorporating physical exercise, and managing risk factors ,,,,,,,,,. Patients establish medication regimes and adopt strategies to adhere to these, such as relying on the colours of tablets, using cues as aids, and tying in regimes with daily activities . They endure side effects of medications ,. They undergo community rehabilitation, striving to achieve the goals that have been set for recovery through hard work and determination ,,,,,,,. Patients experience a range of environmental risks due to their disabilities and are required to deal with these on a daily basis ,.
Patients are frequently required to acquire equipment and make adaptations to their home to accommodate new disabilities, with one complaint being that new equipment takes up too much space, jeopardising the comfort of their home ,,,,,,,. Some patients are no longer able to mobilise around their current accommodation, yet waiting times for more suitable housing can be long and arduous . Home care services such as personal care and meal delivery services are described as inadequate, with complaints over both the availability and standard of services, for example the same meal being delivered every day due to dietary restrictions ,,.
In this period of time after discharge from inpatient care, the patient schedule is often extremely busy with health care appointments ,,, with patients being required to negotiate numerous therapists ,,,. As mentioned earlier, poor knowledge about available services, poor access to care, a lack of continuity, and poor communication between therapists are described as frequent and problematic issues ,,,,,,:
Not being given accessibility and continuity pertained to the difficulty of getting in contact with the professionals by telephone and making appointments, delayed appointments with the doctors and physiotherapists, and delays and uncertainties about promised treatments. 
Only one paper discusses the difficulties of managing co-morbidities alongside stroke, with treatments conflicting with one another and predisposing disabilities interfering with rehabilitation .
3c) Reintegrating into society.
Once home, patients strive to reintegrate into society. Following their stroke, they are usually prohibited to drive for a set period and may be required to take a test set by driving authorities . Many feel frustrated and unsupported by health services as they struggle to understand the logic behind the ban and assessment process, which can lead to rebellion against medical and legal advice with the continuation of driving ,,. Those who can no longer drive are required to negotiate other methods of transport, which can be difficult due to disabilities ,. It is common for patients to aspire to return to work and regain their former social position, yet describe a lack of support and information from health services as well as friends, family, and work colleagues ,,. They acquire mobility aids for both inside and outside the home, but waiting times can be an issue for the acquisition of such items ,,,, and some patients describe having to either purchase these themselves or use inappropriate or unsafe aids putting them at risk of falls ,. The use of wheelchairs was celebrated by many as a way back into society, but environmental barriers such as steps, steep slopes, and narrow doorways were commonly mentioned, although these seem to be less of an issue with powered devices ,,,.
With regards to financial issues, these are likely to vary from country to country depending on the health care system and welfare provision available . Patients in Nigeria and Iran, both developing countries, describe a lack of rehabilitation facilities for those on low incomes, with poor access to care for those who do not have the means to pay for private services ,:
They suffered from having no access to the few existing rehabilitation centres and suffered from low incomes, which made it impossible for them to get such services at their homes. They felt that the government should help them in providing these services as they would then enjoy a better quality of life and escape from physical, emotional and social limitations. 
However, patients in developed countries with government funded health care systems also report suffering financially due to the need to purchase special equipment such as mobility aids and adapted cutlery themselves, or relying on low technology devices due to a lack of economic resources ,. Patients in developed countries describe the organizations that assist with the arrangement of financial benefits from government agencies as obstructive, poorly co-ordinated, and confusing to navigate ,,,. One paper describes how less disabled patients can be denied government benefits, yet be unable to seek employment due to disabilities . Additionally, a fear of losing financial benefits upon return to work due to the inflexibility of government policies can deter patients from returning to employment ,. One paper gives an example of how conflicting policies can result in significant burden for the patient:
Mr. D…can walk only 100 yards, but he wants to shop independently for groceries. He asked his doctor to prescribe a battery operated scooter. At the state/provincial level, the health system would pay 80% toward an electric wheelchair, but not for a scooter. Mr. D withdrew the funds from his federal level retirement plan. This money was considered income at the federal government revenue level, and the state/provincial level income supports program for the severely handicapped. He lost income supports until he depletes his retirement funds. 
3d) Adjusting to life after stroke.
Following a stroke, patients create a new daily structure to accommodate their new disabilities and treatments ,,,,,,. They relearn how to carry out once-familiar tasks ,,,, and spend extra time planning activities ahead of time ,, as well as adopting strategies to deal with physical and cognitive disabilities, such as taking periods of rest, learning how to get up from a fall, or creating lists or filing systems ,,,,,,,,,,,. Aphasic patients describe using strategies such as carrying communication cards, repeating words, gesturing, and using drawings or technical devices. Some patients, however, found the use of such strategies either inappropriate for their needs or too laborious to use .
Following a stroke, patients describe adapting psychologically to their circumstances. They manage this process by searching for a sense of self ,,,,,–,,, and developing acceptance. Acceptance plays a huge part in the recovery process, with patients spending much time and effort working towards and achieving acceptance of their new life that has been altered by stroke and its management ,,,,. Patients appear initially to be unprepared for the slow pace of recovery, resulting in great disappointment as they meet with unexpected setbacks or a plateau in progress ,,,,,, but they describe changing their expectations and priorities over the rehabilitation period as they gain experience of their limitations ,,,,,–,,,,,:
Accepting adaptation was felt to represent giving up and relinquishing the struggle to get better. Thus the participants experienced a conflict about whether to develop new habits or not because they associated change with becoming dependent on technical aids, environmental adaptations, and other people. In other words, although adaptation and change seemed to be necessary, they also represented abandoning possible improvements and the hope for independence. 
4) Reflecting on management.
Patients must make decisions about their health care, requiring an appraisal of their treatments, either with the help of health care providers ,, or based on their own judgements ,,,,,. Sometimes decisions are made that deliberately contradict advice given by health professionals ,,,,,,. This appears often to be the consequence of a breakdown in communication between patient and health professional, or a lack of understanding on behalf of the patient, although informed patient preference is likely to also play a role:
Discontinuing medication, both prescribed and non-prescription analgesics, was reported by participants in all groups because of insufficient pain relief and side effects or fear of side effects. 
Patients commonly reflect on their achievements and self monitor progress to make judgements about their success ,,,,,,,,,,,,, comparing their recovery to that of other stroke patients ,,,,,,, and monitoring for further signs of stroke ,. Patients describe the need to maintain a confidence in their care plan ,,,,,, and one paper described patients keeping up to date with newly available treatments by asking health professionals for information .
To the best of our knowledge, this is the first qualitative systematic review to explore treatment burden in stroke. None of the included papers comprehensively covered the entire patient experience of treatment burden; rather each one explored in depth a particular aspect of management or the patient experience in a specific context. Therefore, this review offers a comprehensive taxonomy and conceptual model of treatment burden in stroke. Using this taxonomy, we have been able to examine relationships between components of treatment burden and theorize causal processes. In turn, we shall now make recommendations about areas of health care provision requiring attention from clinicians and policy makers, and areas where further research is required.
A key finding from this review is that stroke patients spend substantial time and effort seeking out, cognitively processing, and reflecting on information about the management of stroke. There is also evidence that the provision of this information by health services is currently inadequate on a global basis. This resonates with previous literature on treatment burden in heart failure patients ,. It is clear that (1) access to information is poor, (2) time given for the exchange of information is inadequate, (3) the information given is not easily understood by patients and is not tailored to suit their needs, and (4) information is often given at times when patients are not able to process it. These four factors result in patients feeling poorly informed and consequently expending time and energy on researching their stroke management. Both communication during the clinical encounter and provision of information to patients must be improved by health services, as patients' understanding of the rationale behind therapies and their trust in management plans is pertinent to achieving optimum adherence . Knowledge deficits mean patients are ill equipped to plan and organise their care, to develop coping strategies, and to set goals for recovery. The clinical implications of this knowledge deficit require further exploration. A recent Cochrane Review concluded that improved information provision to stroke patients showed no improvement in health-related behaviours, health service usage, or mortality. However, the review did demonstrate an improvement in patient knowledge (which could arguably lead to more informed decision making), increased patient satisfaction, and a small reduction in depression. It also suggested that interventions that actively involve the patient and carers with planned follow-up for reinforcement had a better effect on mood. The authors concluded that the best way to provide information is still unclear, and this needs further investigation . We hypothesise that improved information provision as part of a more comprehensive intervention to decrease treatment burden on a wider level may be more effective, and this should be explored through both quantitative and qualitative research.
In addition to poor provision of information by health services, the exchange of information between patient and professional generally appears to be substandard, resulting in a mismatch in ideas regarding goals and care preferences. This leads to patient dissatisfaction, a prerequisite for nonadherence to subsequent management plans, as confidence and motivation are negatively affected . It is therefore vital that health professionals spend time with patients to gauge their care preferences. Previous research has shown that during the consultation, patients are not always forthcoming with their own agendas ; therefore, eliciting their ideas, concerns, and expectations is an important skill on the part of the health professional, and one that requires to be learned and practiced. Additionally, busy clinics and ward rounds can bestow time constraints that hinder communication. Research aimed at improving communication must therefore include both patients and health professionals at the consultation level to achieve pragmatic interventions. Health service reconfiguration must prioritise enhanced communication between clinician and patient, with outcomes such as treatment burden, patient satisfaction, treatment adherence, and mortality being monitored.
The organisation of services at both macro and micro levels appears to significantly affect treatment burden. The papers in this review describe interactions between stroke patients and a variety of professionals including hospital doctors, nurses, general practitioners, speech and language therapists, physiotherapists, occupational therapists, and social workers. Because of the long-term nature of stroke rehabilitation, patients describe the importance of developing relationships with their therapists, but this is made difficult by poor continuity of care, in both the hospital and acute setting. Patients describe receiving ‘mixed messages’ from different carers who do not communicate with one another. Health professionals must establish good methods of communication with each other and provide individualised, holistic, patient-centred care. If case meetings cannot be carried out face to face then adequate secure methods of communication such as clinical email systems must be utilised.
These findings appear to resonate across various countries in our review; however, issues such as poor continuity of care are likely to depend on organisation of health care systems, which may vary substantially between countries and localities. Some services, for example, are available through government funded initiatives and others require payment at point of care, and the standard of these services are likely to vary considerably . It would therefore be pertinent for future research to examine differences in stroke care provision between localities and any resultant effects on treatment burden. Research can then inform changes to practice and policy at a local level. Additionally, the use of certain technologies may be less available in low-income countries, so guidelines must take account of this.
Attending and planning appointments takes considerable time and effort from the patient, made all the more difficult by poorly organised, fragmented services. Patients are also required to manage often complicated medication regimes and endure any side effects. In westernised countries, patient care has moved away from being patient centred with subspecialisation of therapies and a focus on therapist- rather than patient-set goals . As well as having an effect on treatment burden due to sheer volume of appointments and medications, therapies can contradict or interfere with each other and cause difficulties for patients. This is particularly relevant for stroke patients with multimorbidity who additionally have other treatment regimes to deal with simultaneously . Any measurement of treatment burden developed must be able to take account of multimorbidity to truly reflect the burden experienced by patients. Appointments should be allocated in consultation with the patient as much as possible, with evidence-based strategies such as reminder systems being utilised to improve attendance .
Another important treatment burden relates specifically to hospitalisation experiences. The hospital stay itself is frequently described by patients as unpleasant, with a lack of autonomy over treatments and loss of control over daily routines. Again, this is likely to vary significantly between localities. In this review, stroke patients describe spending long periods of time on rehabilitation wards feeling understimulated and bored. Younger patients describe a lack of tailoring of rehabilitation services to suit their needs. Such issues should be addressed by health care providers, particularly as initial results of recent randomised control trials have shown improved functional recovery associated with very early mobilisation following stroke ,. Improved communication between staff and patients would allow for patient autonomy, and recreational activities or time off the ward should be available to patients, in order to boost morale and maintain motivation.
In the community, social care systems such as home helps and meal delivery systems are described as being of a very poor standard by patients, for example providing a very narrow range of food at inconvenient times of day. The provision of personal care such as help with showering also appears to be lacking. Improvements to these services are vital for adequate patient care as they provide the fundamental aspects of human functioning. Further qualitative work is required to explore these services in different localities, as information concerning this was limited within this review.
Patients describe having difficulty accessing care both as an inpatient and in the community. This resonates across both developed and developing countries in our review. Patients feel that time with therapists is too short, mirroring the lack of time spent imparting information as discussed above. Clinicians must ensure that time is available for consultations with patients. Although this may cost health services money in the short term, it will prevent nonadherence and therefore wasted expenditure in the longer term .
Discharge from hospital is described as a particularly difficult time for patients, with a sense of abandonment without adequate preparation. Patients feel that services are terminated prematurely, and they feel uncertain whom to contact should they need help and advice. This is a very important step in the recovery process, and discharge should be timed appropriately so that services are in place and patients are armed with the appropriate information. Disabled patients need to acquire technical aids and make adaptations to the house, or to move to more appropriate accommodation, and should be supported as much as possible during this time. A point of continuous contact such as a stroke liaison nurse can improve patient satisfaction and support the process of discharge and community rehabilitation . Reintegrating into society, regaining driving ability, and employment are important steps in recovery, and patients need access to appropriate services for support.
Financial difficulties due to stroke management seemed to arise for patients in both developing and developed countries, although only two papers from developing countries were found, so this requires further exploration. In the developing countries, access to care appears to depend on the ability to self-fund therapies, whilst in countries with universal health care access, difficulties can arise when negotiating complicated systems; patients also often self-fund as a result of this.
Several papers discussed the psychological difficulties patients encounter during the recovery process, yet access to psychological therapy seems to be scarce. Patients describe spending time reflecting on their progress, adjusting to their new circumstances, and maintaining motivation. Better access to counselling or psychology services is therefore pertinent for stroke patients.
Two studies made gender comparisons of the patient experience of managing stroke ,, but little information was provided to allow comparisons based on other patient characteristics such as age, ethnicity, and socio-economic deprivation. Differences, if any, associated with such patient characteristics should be considered further, especially in relation to the development of any patient-reported outcome measure of treatment burden.
For the first time, our study approaches the management of stroke as a global set of practices carried out by patients in multiple contexts. The extent of treatment burden can be affected not only by the nature of illness but also by the micro- and macro-organisation of health services. We hypothesise that the components of treatment burden can amalgamate , and if treatment burden exceeds patient capacity, then nonadherence may occur , a problem in chronic disease management well recognised by the World Health Organisation but not yet fully understood . We therefore propose that to improve patient adherence, we must address the organisation and delivery of health services to minimise burden on patients.
Aspects of Treatment Burden Missing from the Literature
Certain aspects of stroke management were mentioned less often than anticipated: the process of acute care, medications, social care, the stroke liaison nurse, and the use of new technologies. Only one study addressed multimorbidity , although it is known that patients with stroke often suffer from multiple morbidities , each with its own management plan and demands that may interfere with one another. Further primary studies are required that explore these aspects of stroke management and the treatment burden that may arise for patients.
How This fits In with Current Knowledge
In comparison to our recent work on treatment burden in heart failure patients, there was less information available on the burden of medications, particularly polypharmacy, side effects, collecting prescriptions, altering routines as required, and drug interactions ,. More emphasis was placed by stroke patients on the development of coping strategies and goals for rehabilitation, and on adjusting to life after the illness has presented. These changes may be due to differences in methodologies, or they may reflect the differences in onset and management of these two chronic diseases.
However, one important similarity between this review and previous work with heart failure patients is that the care of patients with both chronic diseases is very sensitive to investments in service provision. Shifts from intensive care environments, such as rehabilitation centres, to self-help and community-based services may fundamentally change the burden of treatment from professionals to patients and caregivers. As our review documents, patients and caregivers are already burdened and perceive they gain inadequate support from health care services. Further work toward understanding how policy changes in health care affect the balance of burden and capacity for patients and caregivers is essential to assess these dynamic interactions.
A recent systematic review explored the conceptualization of treatment burden in chronic disease. This review examined attributes, antecedents, and consequences of treatment burden  but differs to ours in that most studies included were quantitative and cover a wide range of chronic diseases without differentiating between these in the results. An interesting overview of the concepts of treatment burden is therefore described, rather than a deeper exploration into disease-specific aspects of treatment burden.
A recent paper by Eton et al  created a conceptual framework of treatment burden in patients with complex chronic disease that resonates highly with our results. Eton et al. carried out their study in the US where patients are required to negotiate with insurers and face financial challenges that are perhaps more profound than in countries with a universal health care system. The financial implications of chronic disease management for patients in differing countries appear to be poorly examined elsewhere in the literature, and this requires further exploration.
Another recent paper, by Tran et al. , sought to develop a method of measurement of treatment burden in multimorbid patients. Although there were many similarities to our results, two differences to highlight are that the measurement developed did not include information on making sense of treatments, as acknowledged by the authors, and the impact of health care organisation was not explicitly explored. Medication side effects were not included in the instrument because of the conceptual nature of the study, and financial implications did not arise in patient interviews, because of the universal health care system in France where the study was conducted.
The search was limited to publications from the year 2000 and onwards. This date was chosen because our review is aimed at understanding current, rather than historical, patient experiences of stroke in order to inform current clinical practice and policy. Global management of stroke has changed in recent years with the introduction of stroke units and community rehabilitation programmes ,, and hence we believe this to be justifiable, but appreciate that it could be viewed as a limitation. We restricted our search to English-language papers, but no geographical restriction was set, and our review includes papers from a variety of countries. However, the language restriction may have imposed a degree of geographical restriction, and there was a paucity of data from low-income countries. The exclusion of methodologies such as telephone and postal questionnaires could be regarded as a limitation, as some studies exploring treatment burden may have used these methods. Similarly, grey literature was excluded to manage the scope of the review.
Important strengths of our review are that we conducted an exhaustive search and our tight inclusion criteria allowed us to avoid collecting too broad a spectrum of methodologies, as high numbers of studies using extremely varied methods made in-depth analysis of the data and applicability of findings extremely challenging. Our approach helped us to maintain focus whilst producing a rich picture of stroke management. As a result, the number of studies included was considerable yet still feasible for the application of qualitative analysis. Finally, a particularly novel aspect of this review was our approach to data analysis using a coding framework underpinned by a robust theory, NPT. The use of framework synthesis  was appropriate as we had a preconceived research objective based on our knowledge of the literature and clinical experience, yet this method ensured that our results arose directly from the data. We found this approach highly pragmatic and useful, as have others, , and believe it enhanced transparency of coding. While the suppression of interpretive creativity  is a potential risk, we attempted to minimise this by paying close attention to any data that may have fallen outside the framework, and iteratively adapting the framework during analysis to ensure that analysis was somewhat inductive . We found this novel method of data analysis very useful for identifying the components of treatment burden in stroke from the patient perspective, and did not find any aspects of treatment burden that fell outside this framework.
The large variation in research objectives of included studies means that a diverse range of treatment burdens are described. A major advantage to our review is that it pieces together information about treatment burden from various sources to create a more comprehensive picture than is usual for this type of study. However, one limitation is that the papers and therefore participants studied were heterogeneous, making comparisons between papers difficult, for example to compare papers from different countries. It is likely that there is significant variation in health system delivery between countries, including availability of services through state-sponsored insurance.
Both severity of stroke and level of disability are likely to influence treatment burden, yet both are generally poorly described in the included papers, and those that do describe them use varying measures and terminology. It could be argued that the most physically and mentally impaired may be the most burdened and the least likely to participate in research, a common problem in the research arena. For example, the papers that study aphasic patients describe a particular difficulty for these patients in communicating with therapists and carers, a perhaps unsurprising but important finding ,,. The inclusion of papers that study aphasic patients and wheelchair users is almost certainly a strength of our review ,,,,, but there is likely to be an over-representation of able-bodied patients. Time since diagnosis is also likely to influence treatment burden, as patients adjust to their condition and the process of rehabilitation. Interestingly, our quality appraisal instrument did not judge quality based on the detailed provision of patient characteristics. During appraisal, judgements were made about whether the sample was appropriate for the research objectives of that individual study, and if authors assessed generalisability accurately. In the qualitative research arena, focussing on these factors tends to be more pertinent than producing work that is generalisable to other populations, one argument made by those against qualitative syntheses . We believe, however, that with transparency in reporting about generalisability, qualitative synthesis is invaluable for informing clinical practice and health policy.
We have created a comprehensive taxonomy of treatment burden underpinned by international research which has the potential to drive service improvement. The aim of this review is not to produce a taxonomy that is universally generalisable, but one that gives insight into the scope of burdens experienced by patients and can inform the development of measures and interventions. Our taxonomy suggests that treatment burden in stroke can be broadly categorised into: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and 4) reflecting on management. Patients describe care as fragmented and lacking in continuity, with poor communication between patient and clinician and between health care providers. Information provision is generally poor, and patients would like clinicians to spend more time with them. There is considerable room for improvement in both inpatient and community services.
Treatment burden appears to be greatly affected by the micro and macro organisation of health services, which is likely to vary considerably between localities. Further work is recommended to better understand the patient experience of treatment burden in stroke in varying contexts and to explore how it may vary by patient demographic or clinical characteristics. Treatment burden should be investigated in relation to other chronic diseases, and importantly in patients with multiple morbidities. This could inform the generation of a patient-reported outcome measure to be utilised by both policy makers and health care providers, and could serve as a new goal for quality improvement.
Inclusion and exclusion criteria for papers. The inclusion and exclusion criteria used during the screening process.
Coding framework informed by Normalization Process Theory. The framework used to code data from each included paper.
Participant details. Details of participants in each included study.
Study methods and results. Details of research methods and results for each included study.
Taxonomy of treatment burden with exemplar quotations. A taxonomy of treatment burden in stroke as shown in Table 2, with the addition of examples of quotations from included studies.
Search strategy. Details of the strategies employed for searching Medline, Embase, PsycINFO, CINAHL, and Scopus databases.
The authors are members of the International Minimally Disruptive Medicine Workgroup (Frances S Mair, Carl R May, Victor M Montori, Katie Gallacher, Sara Macdonald, David T Eton, Nathan Shippee, Deborah Morrison, Bhautesh Jani, Susan Browne, David Blane, Nilay Shah, Patricia Erwin, Kathleen Yost, Alison Richardson, and Sara Demain) and would like to thank the other members for their conceptual assistance.
We would like to thank Jane Goodfellow for her assistance in the design of Figures 1 and 2, and the following for their assistance with the screening and data extraction process: Alastair Rankin, Jennifer Maxwell, Andrew Leitch, Louise Bradshaw, Nikole Runciman, Sylvia Kamya, Aishah Coyte, Yasmin Grant, Ahad Jan, Colette Kenman, Jamie Hooker, Megan Harwood, Patrick Collins.
Conceived and designed the experiments: KG DM BJ SM CRM VMM PJE GDB DTE PL FSM. Analyzed the data: KG DM BJ SM CRM VMM FSM. Contributed reagents/materials/analysis tools: KG CRM VMM FSM. Wrote the first draft of the manuscript: KG FSM. Contributed to the writing of the manuscript: KG DM BJ SM CRM VMM PJE GDB DTE PL FSM. ICMJE criteria for authorship read and met: KG DM BJ SM CRM VMM PJE GDB DTE PL FSM. Agree with manuscript results and conclusions: KG DM BJ SM CRM VMM PJE GDB DTE PL FSM. Designed the search strategy: PJE.
- 1. May C, Montori VM, Mair FS (2009) We need minimally disruptive medicine. BMJ 339: b2803. doi: 10.1136/bmj.b2803
- 2. Gallacher K, May C, Montori VM, Mair FS (2011) Understanding Treatment Burden in Chronic Heart Failure Patients. A Qualitative Study. Ann Fam Med 9: 235–243. doi: 10.1370/afm.1249
- 3. Eton DT, Ramalho-de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, Montori VM (2012) Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas 3: 39–49. doi: 10.2147/prom.s34681
- 4. Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P (2012) Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med 10: 68. doi: 10.1186/1741-7015-10-68
- 5. Cannon CP (2009) Can the polypill save the world from heart disease?. Lancet 373: 1313–1314. doi: 10.1016/s0140-6736(09)60652-8
- 6. Granger BB, Sandelowski M, Tahshjain H, Swedberg K, Ekman I (2009) A Qualitative Descriptive Study of the Work of Adherence to a Chronic Heart Failure Regimen. J Cardiovasc Nurs 24: 308–315. doi: 10.1097/jcn.0b013e3181a4be30
- 7. Chambers JA, O'Carrol RE, Hamilton B, Whittaker J, Johnstone M, Sudlow C, Dennis M (2010) Adherence to medication in stroke survivors: A qualitative comparison of low and high adherers. Br J Health Psychol 16: 592–609. doi: 10.1348/2044-8287.002000
- 8. O'Carroll R, Whittaker J, Hamilton B, Johnston M, Sudlow C, Dennis M (2011) Predictors of Adherence to Secondary Preventive Medication in Stroke Patients. Ann Behav Med 41: 383–390. doi: 10.1007/s12160-010-9257-6
- 9. World Health Organization (2008) 2008–2013 Action Plan for the Global Strategy for the Prevention and Control of Noncommunicable Diseases. Available: http://www.who.int/nmh/Actionplan-PC-NCD-2008.pdf Accessed 25th March 2013.
- 10. DiMatteo MR, Giordani PJ, Lepper HS, Croghan TW (2002) Patient Adherence and Medical Treatment Outcomes: A Meta-Analysis. Med Care 40: 794–811. doi: 10.1097/00005650-200209000-00009
- 11. Bayliss EA, Steiner JF, Crane LA, Main DS (2003) Descriptions of Barriers to Self-Care by persons with Comorbid Chronic Diseases. Ann Fam Med 1: 15–21. doi: 10.1370/afm.4
- 12. Shippee ND, Shah ND, May CR, Mair FS, Montori VM (2012) Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol 65: 1041–1051 doi:0.1016/j.jclinepi.2012.05.005. doi: 10.1016/j.jclinepi.2012.05.005
- 13. World Health Organization (2003) Adherence to long-term therapies - Evidence for action. Available: http://apps.who.int/medicinedocs/en/d/Js4883e/5.html Accessed 25th March 2013.
- 14. Barber N, Parsons J, Clifford S, Darracott R, Horne R (2004) Patients' problems with new medication for chronic conditions. Qual Saf Health Care 13: 172–175. doi: 10.1136/qshc.2003.005926
- 15. Bane C, Hughes CM, McElnay JC (2006) Determinants of medication adherence in hypertensive patients: An application of self-efficacy and the Theory of Planned Behaviour. Int J Pharm Pract 14: 197–204. doi: 10.1211/ijpp.14.3.0006
- 16. Buetow S, Kiata L, Liew T, Kenealy T, Dovey S, Elwyn G (2009) Patient error: A Preliminary Taxonomy. Ann Fam Med 7: 223–231. doi: 10.1370/afm.941
- 17. McKenna S (2011) Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science. BMC Med 9: 86 doi:10.1186/1741-7015-9-86.
- 18. Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B (2012) Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet 380: 37–43 doi:10.1016/S0140-6736(12)60240-2.
- 19. National Audit Office (2005) Department of Health - Reducing Brain Damage: Faster access to better stroke care. Available: http://www.nao.org.uk/publications/0506/reducing_brain_damage.aspx Accessed: 25th March 2013.
- 20. American Heart Association (2009) Heart Disease and Stroke Statistics. 2009 Update, American Heart Association. Available: http://www.strokeassociation.org/STROKEORG/AboutStroke/About-Stroke_UCM_308529_SubHomePage.jsp Accessed: 25th March 2013.
- 21. UK Department of Health (2009) Stroke. Available: http://www.dh.gov.uk/en/Publicationsandstatistics/Statistics/Performancedataandstatistics/Integratedperfomancemeasuresmonitoring/DH_112528 Accessed: 25th March 2013.
- 22. McArthur KS, Quinn TJ, Higgins P, Langhorne P (2011) Post-acute care and secondary prevention after ischaemic stroke. BMJ 342: d2083. doi: 10.1136/bmj.d2083
- 23. McKevitt C, Redfern J, Mold F, Wolfe C (2004) Qualitative Studies of Stroke. Stroke 35: 1499–1505. doi: 10.1161/01.str.0000127532.64840.36
- 24. National Institute for health and Clinical Effectiveness (2008) Stroke: Diagnosis and initial management of acute stroke and transient ischaemic attack (TIA). Available: http://publications.nice.org.uk/stroke-cg68 Accessed 25th March 2013.
- 25. Scottish Intercollegiate Guidelines Network (2010) Management of patients with stroke: rehabilitation, prevention and management of complications, and discharge planning no 118. Available: http://www.sign.ac.uk/guidelines/fulltext/118/index.html Accessed 25th March 2013.
- 26. Salter K, Hellings C, Foley N, Teasell R (2008) The experience of living with stroke: A qualitative meta-synthesis. J Rehabil Med 40: 595–602. doi: 10.2340/16501977-0238
- 27. Reed MC, Wood V, Harrington R, Paterson J (2012) Developing stroke rehabilitation and community services: A met-synthesis of qualitative literature. Disabil Rehabil 34: 553–563. doi: 10.3109/09638288.2011.613511
- 28. Brauer DJ, Schmidt BJ, Pearson V (2001) A framework for care during the stroke experience. Rehabil Nurs 26: 88–93. doi: 10.1002/j.2048-7940.2001.tb02211.x
- 29. Greenwood N, Mackenzie A, Cloud GC, Wilson N (2009) Informal primary carers of stroke survivors living at home - challenges, satisfactions and coping: a systematic review of qualitative studies. Disabil Rehabil 31: 337–351. doi: 10.1080/09638280802051721
- 30. Mackenzie A, Greenwood N (2012) Positive experiences of caregiving in stroke: a systematic review. Disabil Rehabil 34: 1413–1422. doi: 10.3109/09638288.2011.650307
- 31. Daniel K, Wolfe CDA, Busch MA, McKevitt C (2009) What are the social consequences of stroke for working-aged adults?: A systematic review. Stroke 40: e431–e440. doi: 10.1161/strokeaha.108.534487
- 32. Lamb M, Buchanan D, Godfrey CM, Harrison MB, Oakley P (2008) The psychosocial spiritual experience of elderly individuals recovering from stroke: A systematic review. Int J Evid Based Healthc 6: 173–205. doi: 10.1111/j.1744-1609.2008.00079.x
- 33. Rosewilliam S, Roskell CA, Pandyan AD (2011) A systematic review and synthesis of the quantitative and qualitative evidence behind patient-centred goal setting in stroke rehabilitation. Clin Rehabil 25: 501–514. doi: 10.1177/0269215510394467
- 34. Murray J, Ashworth R, Forster A, Young J (2003) Developing a primary care-based stroke service: a review of the qualitative literature. Br J Gen Pract 53: 137–142.
- 35. Kirkevold M, Bronken BA, Martinsen R, Kvigne K (2012) Promoting psychosocial well-being following a stroke: Developing a theoretically and empirically sound complex intervention. Int J Nurs Stud 49: 386–397. doi: 10.1016/j.ijnurstu.2011.10.006
- 36. Morris R (2011) The Psychology of Stroke in Young Adults: The Roles of Service Provision and Return to Work. Stroke Res Treat 534812 DOI:10.4061/2011/534812.
- 37. Pringle J, Hendry C, McLafferty E (2008) A review of the early discharge experiences of stroke survivors and their carers. J Clin Nurs 17: 2384–2397. doi: 10.1111/j.1365-2702.2008.02372.x
- 38. Brown K, Worrall LE, Davidson B, Howe T (2012) Living successfully with aphasia: a qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists. Int J Speech Lang Pathol 14: 141–155. doi: 10.3109/17549507.2011.632026
- 39. Peoples H, Satink T, Steultjens E (2011) Stroke survivors' experiences of rehabilitation: A systematic review of qualitative studies. Scand J Occup Ther 18: 163–171. doi: 10.3109/11038128.2010.509887
- 40. Mold F, McKevitt C, Wolfe C (2003) A review and commentary of the social factors which influence stroke care: issues of inequality in qualitative literature. Health & Social Care in the Community 11: 405–414. doi: 10.1046/j.1365-2524.2003.00443.x
- 41. O'Halloran R, Grohn B, Worrall L (2012) Environmental Factors That Influence Communication for Patients With a Communication Disability in Acute Hospital Stroke Units: A Qualitative Metasynthesis. Arch Phys Med Rehabil 93: S77–S85. doi: 10.1016/j.apmr.2011.06.039
- 42. Gallacher K, Jani B, Morrison D, Macdonald S, Blane D, Erwin P, May CR, Montori VM, Eton DT, Smith F, Batty GD, Mair FS (2013) Qualitative Systematic Reviews of Treatment Burden in Stroke, Heart Failure and Diabetes - Methodological Challenges and Solutions. BMC Med Res Methodol 13: 10. doi: 10.1186/1471-2288-13-10
- 43. Ritchie J, Spencer L (1994) Qualitative data analysis for applied policy research. In: Bryman A, Burgess R, editors. Analysing Qualitative Data. London: Routledge. pp. 173–194.
- 44. Oliver SR, Rees RW, Clarke-Jones L, Milne R, Oakley AR, Gabbay J, Stein K, Buchanan P, Gyte G (2008) A multidimensional conceptual framework for analysing public involvement in health services research. Health Expect 11: 72–84 doi:10.1111/j.1369-7625.2007.00476.x.
- 45. May C, Finch T (2009) Implementing, embedding, and integrating practices: an outline of Normalization Process Theory. Sociology 43: 535–554.
- 46. May C, Finch T, Ballini L, MacFarlane A, Mair F, Murray E, Treweek S, Rapley T (2011) Evaluating complex interventions and health technologies using normalization process theory development of a simplified approach and web-enabled toolkit. BMC Health Serv Res 11: 245. doi: 10.1186/1472-6963-11-245
- 47. MacFarlane A, O'Reilly-de Brun M (2012) Using a Theory-Driven Conceptual Framework in Qualitative Health Research. Qual Health Res 22: 607–618. doi: 10.1177/1049732311431898
- 48. May C (2010) Retheorizing the Clinical Encounter: Normalization Processes and the Corporate Ecologies of Care. In: Scambler G, Scambler S, editors. Assaults on the Lifeworld: New Directions in the Sociology of Chronic and Disabling Conditions. London: Routledge. pp. 129–145.
- 49. Jani B, Blane D, Browne S, Montori VM, May CR, Shippee ND, Mair FS (2013) Identifying treatment burden as an important concept for end of life care in those with advanced heart failure. Curr Opin Support Palliat Care 7: 3–7 doi:10.1097/SPC.0b013e32835c071f.
- 50. Popay J, Rogers A, Williams G (1998) Rationale and Standards for the Systematic Review of Qualitative Literature in Health Services Research. Qual Health Res 8: 341–351. doi: 10.1177/104973239800800305
- 51. Dixon-Woods M, Sutton A, Shaw R, Miller T, Smith J, Young B, Bonas S, Booth A, Jones D (2007) Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. J Health Serv Res Policy 12: 42–47. doi: 10.1258/135581907779497486
- 52. Bendz M (2000) Rules of relevance after a stroke. Soc Sci Med 51: 713–723. doi: 10.1016/s0277-9536(99)00486-4
- 53. Bendz M (2003) The first year of rehabilitation after a stroke - from two perspectives. Scand J Caring Sci 17: 215–222. doi: 10.1046/j.1471-6712.2003.00217.x
- 54. Medin J, Barajas J, Ekberg K (2006) Stroke patients' experiences of return to work. Disabil Rehabil 28: 1051–1060 doi:10.1080/09638280500494819.
- 55. Roding J, Lindstrom B, Malm J, Ohman A (2003) Frustrated and invisible–younger stroke patients' experiences of the rehabilitation process. Disabil Rehabil 25: 867–874 doi:10.1080/0963828031000122276.
- 56. Widar M, Ek AC, Ahlstrom G (2004) Coping with long-term pain after a stroke. J Pain Symptom Manag 27: 215–225. doi: 10.1016/j.jpainsymman.2003.07.006
- 57. Widar M, Ek AC, Ahlstrom G (2007) Caring and uncaring experiences as narrated by persons with long-term pain after a stroke. Scand J Caring Sci 21: 41–47 doi:10.1111/j.1471-6712.2007.00449.
- 58. Hjelmblink F, Bernsten CB, Uvhagen H, Kunkel S, Holmstrom I (2007) Understanding the meaning of rehabilitation to an aphasic patient through phenomenological analysis - a case study. Int J Qual Stud Health Well-being 2: 93–100 doi:10.1080/17482620701296358.
- 59. Andersson A, Hansebo G (2009) Elderly peoples' experience of nursing care after a stroke: from a gender perspective. J Adv Nurs 65: 2038–2045. doi: 10.1111/j.1365-2648.2009.05060.x
- 60. Carlsson GE, Moller A, Blomstrand C (2009) Managing an everyday life of uncertainty–a qualitative study of coping in persons with mild stroke. Disabil Rehabil 31: 773–782. doi: 10.1080/09638280802638857
- 61. Patomella AH, Johansson K, Tham K (2009) Lived experience of driving ability following stroke. Disabil Rehabil 31: 726–733. doi: 10.1080/09638280802306539
- 62. Lofmark U, Hammarstrom A (2005) Older stroke patients' negotiations within the hierarchic medical context. Qual Health Res 15: 778–790. doi: 10.1177/1049732305275891
- 63. Medin J, Larson J, von Arbin M, Wredling R, Tham K (2010) Elderly persons' experience and management of eating situations 6 months after stroke. Disabil Rehabil 32: 1346–1353. doi: 10.3109/09638280903514747
- 64. Eriksson G, Tham K (2010) The meaning of occupational gaps in everyday life in the first year after stroke. OTJR 30: 184–192. doi: 10.3928/15394492-20091123-01
- 65. Hjelmblink F, Holmstrom I, Kjeldmand D (2010) Stroke patients' delay of emergency treatment. Scand J Caring Sci 24: 307–311. doi: 10.1111/j.1471-6712.2009.00721.x
- 66. Hjelmblink F, Holmstrom I, Sanner M (2009) The meaning of rehabilitation for older people who have survived stroke. J Nurs Healthc Chronic Illn 1: 186–195. doi: 10.1111/j.1752-9824.2009.01020.x
- 67. Medin J, Larson J, von Arbin M, Wredling R, Tham K (2010) Striving for control in eating situations after stroke. Scand J Caring Sci 24: 772–780. doi: 10.1111/j.1471-6712.2010.00775.x
- 68. Wallenbert I, Jonsson H (2005) Waiting to get better: a dilemma regarding habits in daily occupations after stroke. Am J Occup Ther 59: 218–224. doi: 10.5014/ajot.59.2.218
- 69. Johansson MB, Carlsson M, Sonnander K (2012) Communication difficulties and the use of communication strategies: from the perspective of individuals with aphasia. Int J Lang Commun Disord 47: 144–155. doi: 10.1111/j.1460-6984.2011.00089.x
- 70. Wottrich AW, Astrom K, Lofgren M (2012) On parallel tracks: newly home from hospital - people with stroke describe their expectations. Disabil Rehabil 34: 1218–1224. doi: 10.3109/09638288.2011.640381
- 71. Perry L, McLaren S (2003) Eating difficulties after stroke. J Adv Nurs 43: 360–369. doi: 10.1046/j.1365-2648.2003.02724.x
- 72. Cowdell F, Garrett D (2003) Recreation in stroke rehabilitation part two: exploring patients' views. Int J Ther Rehabil 10: 456–462.
- 73. Townend E, Tinson D, Kwan J, Sharpe M (2006) Fear of recurrence and beliefs about preventing recurrence in persons who have suffered a stroke. J Psychosom Res 61: 747–755. doi: 10.1016/j.jpsychores.2006.09.006
- 74. Salisbury L, Wilkie K, Bulley C, Shiels J (2010) ‘After the stroke’: Patients' and carers' experiences of healthcare after stroke in Scotland. Health Soc Care Community 18: 424–432 doi:10.1111/j.1365-2524.2010.00917.
- 75. Alaszewski A, Alaszewski H, Potter J (2006) Risk, Uncertainty and Life Threatening Trauma: Analysing Stroke Survivor's Accounts of Life after Stroke. Forum Qual Soc Res 7: 1–16.
- 76. Maclean N, Pound P, Wolfe C, Rudd A (2000) Qualitative analysis of stroke patients' motivation for rehabilitation. BMJ 321: 1051. doi: 10.1136/bmj.321.7268.1051
- 77. Burton CR (2000) Re-thinking stroke rehabilitation: the Corbin and Strauss chronic illness trajectory framework. J Adv Nurs 32: 595–602. doi: 10.1046/j.1365-2648.2000.01517.x
- 78. Lobeck M, Thompson AR, Shankland MC (2005) The experience of stroke for men in retirement transition. Qual Health Res 15: 1022–1036. doi: 10.1177/1049732305280772
- 79. Jones F, Mandy A, Partridge C (2008) Reasons for recovery after stroke: a perspective based on personal experience. Disabil Rehabil 30: 507–516. doi: 10.1080/09638280701355561
- 80. Sumathipala K, Radcliffe E, Sadler E, Wolfe CDA, McKevitt C (2012) Identifying the long-term needs of stroke survivors using the International Classification of Functioning, Disability and Health. Chronic Illn 8: 31–43. doi: 10.1177/1742395311423848
- 81. Kitson AL, Dow C, Calabrese JD, Locock L, Athlin AM (2013) Stroke survivors' experiences of the fundamentals of care: A qualitative analysis. Int J Nurs Stud 50: 392–403. doi: 10.1016/j.ijnurstu.2012.09.017
- 82. Wood JP, Connelly DM, Maly MR (2010) ‘Getting back to real living’: a qualitative study of the process of community reintegration after stroke. Clin Rehabil 24: 1045–1056 doi:10.1177/0269215510375901.
- 83. Clarke P (2003) Towards a greater understanding of the experience of stroke: Integrating quantitative and qualitative methods. J Aging Stud 17: 171–187 doi:10.1016/s0890-4065(03)00005-7.
- 84. Rochette A, Tribble DS-C, Desrosiers J, Bravo G, Bourget A (2006) Adaptation and coping following a first stroke: a qualitative analysis of a phenomenological orientation. Int J Rehabil Res 29: 247–249. doi: 10.1097/01.mrr.0000230051.24228.c8
- 85. Kessler D, Dubouloz CJ, Urbanowski R, Egan M (2009) Meaning perspective transformation following stroke: the process of change. Disabil Rehabil 31: 1056–1065. doi: 10.1080/09638280802509512
- 86. Wood JP, Connelly DM, Maly MR (2009) “Holding me back”: living with arthritis while recovering from stroke. Arch Phys Med Rehabil 90: 494–500. doi: 10.1016/j.apmr.2008.08.224
- 87. Barker DJ, Reid D, Cott C (2004) Acceptance and meanings of wheelchair use in senior stroke survivors. Am J Occup Ther 58: 221–230. doi: 10.5014/ajot.58.2.221
- 88. Barker DJ, Reid D, Cott C (2006) The experience of senior stroke survivors: factors in community participation among wheelchair users. Can J Occup Ther 73: 18–25. doi: 10.2182/cjot.05.0002
- 89. Cross A, Schneider M (2010) A preliminary qualitative analysis of the impact of hope on stroke recovery in women. Top Stroke Rehabil 17: 484–495. doi: 10.1310/tsr1706-484
- 90. Reid D (2004) Impact of the environment on role performance in older stroke survivors living at home. Int J Ther Rehabil 11: 567–573.
- 91. Anderson S, Whitfield K (2011) An ecological approach to activity after stroke: it takes a community. Top Stroke Rehabil 18: 509–524. doi: 10.1310/tsr1805-509
- 92. Gallagher P (2011) Becoming normal: a grounded theory study on the emotional process of stroke recovery. Can J Neurosci Nurs 33: 24–32.
- 93. Ch'ng AM, French D, Mclean N (2008) Coping with the Challenges of Recovery from Stroke Long Term Perspectives of Stroke Support Group Members. J Health Psychol 13: 1136–1146 doi:10.1177/1359105308095967.
- 94. White JH, Magin P, Pollack MRP (2009) Stroke patients' experience with the Australian health system: a qualitative study. Can J Occup Ther 76: 81–89. doi: 10.1177/000841740907600205
- 95. Knight K, Worrall L, Rose T (2006) The provision of health information to stroke patients within an acute hospital setting: what actually happens and how do patients feel about it?. Top Stroke Rehabil 13: 78–98. doi: 10.1310/fc6m-p7l0-w3xd-4wae
- 96. Worrall L, Sherratt S, Rogers P, Howe T, Hersh D, Ferguson A, Davidson B (2011) What people with aphasia want: Their goals according to the ICF. Aphasiology 25: 309–322 doi:10.1080/02687038.2010.508530.
- 97. Gustafsson L, McLaughlin K (2009) An exploration of clients' goals during inpatient and outpatient stroke rehabilitation. Int J Ther Rehabil 16: 324–330.
- 98. Laver K, Rehab MC, Halbert J, Stewart M, Phty M, Crotty M (2010) Patient readiness and ability to set recovery goals during the first 6 months after stroke. J Allied Health 39: e149–154.
- 99. White JH, Gray KR, Magin P, Attia J, Sturm J, Carter G, Pollack M (2012) Exploring the experience of post-stroke fatigue in community dwelling stroke survivors: a prospective qualitative study. Disabil Rehabil 34: 1376–1384. doi: 10.3109/09638288.2011.645111
- 100. White JH, Miller B, Magin P, Attia J, Sturm J, Pollack M (2012) Access and participation in the community: a prospective qualitative study of driving post-stroke. Disabil Rehabil 34: 831–838. doi: 10.3109/09638288.2011.623754
- 101. Wolfenden B, Grace M (2012) Identity continuity in the face of biographical disruption: ‘It's the same me’. Brain Impair 13: 203–211. doi: 10.1017/brimp.2012.16
- 102. Grohn B, Worrall LE, Simmons-Mackie N, Brown K (2012) The first 3-monhts post-stroke: What facilitates successfully living with aphasia?. Int J Speech Lang Pathol 14: 390–400. doi: 10.3109/17549507.2012.692813
- 103. Lynch EB, Butt Z, Heinemann A, David V, Nowinski CJ, Perez L, Cella D (2008) A Qualitative Study of Quality of Life After Stroke: The Importance of Social Relationships. J Rehabil Med 40: 518–523 doi:10.2340/16501977-0203.
- 104. Damush TM, Plue L, Bakas T, Schmid A, Williams LS (2007) Barriers and facilitators to exercise among stroke survivors. Rehabil Nurs 32: 253–262. doi: 10.1002/j.2048-7940.2007.tb00183.x
- 105. Popovich JM, Fox PG, Bandagi R (2007) Coping with stroke: psychological and social dimensions in U.S. patients. Int J Psychiatr Nurs Res 12: 1474–1487.
- 106. Flinn NA, Stube JE (2010) Post-stroke fatigue: qualitative study of three focus groups. Occup Ther Int 17: 81–91. doi: 10.1002/oti.286
- 107. Hartke RJ, Trierweiler R, Bode R (2011) Critical factors related to return to work after stroke: A qualitative study. Top Stroke Rehabil 18: 341–351. doi: 10.1310/tsr1804-341
- 108. Kirkevold M (2002) The unfolding illness trajectory of stroke. Disabil Rehabil 24: 887–898 doi:10.1080/09638280210142239.
- 109. Mangset M, Tor ED, Forde R, Wyller TB (2008) ‘We're just sick people, nothing else’: … factors contributing to elderly stroke patients' satisfaction with rehabilitation. Clin Rehabil 22: 825–835 doi:10.1177/0269215508091872.
- 110. Kirkevold M, Christensen D, Andersen G, Johansen SP, Harder I (2012) Fatigue after stroke: manifestations and strategies. Disabil Rehabil 34: 665–670. doi: 10.3109/09638288.2011.615373
- 111. Proot IM, Abu-Saad HH, de Esch-Janssen WP, Crebolder HFJM, ter Meulen RHJ (2000) Patient autonomy during rehabilitation: the experiences of stroke patients in nursing homes. Int J Nurs Stud 37: 267–276. doi: 10.1016/s0020-7489(00)00008-0
- 112. Proot IM, Crebolder HFJM, Abu-Saad HH, Macor THGM, Meulen RHJT (2000) Facilitating and Constraining Factors on Autonomy. Clin Nurs Res 9: 460–478 doi:10.1177/10547730022158690.
- 113. Proot IM, ter Meulen RHJ, Abu-Saad HH, Crebolder HFJM (2007) Supporting stroke patients' autonomy during rehabilitation. Nurs Ethics 14: 229–241. doi: 10.1177/0969733007073705
- 114. Hale L, Bennett D, Crawshaw A, Davis H (2003) Stroke rehabilitation - comparing hospital and home based physiotherapy: the patient's perception. NZ J Physiother 31: 84–92.
- 115. Brown K, Worrall L, Davidson B, Howe T (2010) Snapshots of success: An insider perspective on living successfully with aphasia. Aphasiology 24: 1267–1295. doi: 10.1080/02687031003755429
- 116. Dalvandi A, Heikkila K, Maddah SSB, Khankeh HR, Ekman SL (2010) Life experiences after stroke among Iranian stroke survivors. Int Nurs Rev 57: 247–253. doi: 10.1111/j.1466-7657.2009.00786.x
- 117. Casey D, Murphy K, Cooney A, O'Shea E (2008) Patient perceptions having suffered a stroke in Galway. Br J Community Nurs 13: 384–390.
- 118. Olaleye O, Suddick K (2012) A study of perceived factors affecting patients' participation in outpatient stroke physiotherapy. Int J Ther Rehabil 19: 581–590.
- 119. Yeung SM, Wong FKY, Mok E (2011) Holistic concerns of Chinese stroke survivors during hospitalization and in transition to home. J Adv Nurs 67: 2405. doi: 10.1111/j.1365-2648.2011.05673.x
- 120. Moon L, Moise P, Jacobzone S, and the ARD-Stroke Experts Group (2003) Stroke Care in OECD Countries: A Comparison of Treatment, Costs, Outcomes in 17 Counties. Available: http://www.oecd.org/els/healthpoliciesanddata/2957752.pdf. Accessed 25th March 2013.
- 121. Forster A, Brown L, Smith J, House A, Knapp P, Wright JJ, Young J (2012) Information provision for stroke patients and their caregivers (review). Cochrane Database of Systematic Reviews doi:10.1002/14651858.CD001919.pub3.
- 122. Barry CA, Bradley CP, Britten N, Stevenson FA, Barber N (2000) Patients' unvoiced agendas in general practice consultations: qualitative study. BMJ 320: 1246. doi: 10.1136/bmj.320.7244.1246
- 123. Tinetti M, Fried TR, Boyd CM (2012) Designing Health Care for the Most Common Chronic Condition-Multimorbidity. JAMA 307: 2493–2494. doi: 10.1001/jama.2012.5265
- 124. Macharia WMLG (1992) An overview of interventions to improve compliance with appointment keeping for medical services. JAMA 267: 1813–1817. doi: 10.1001/jama.267.13.1813
- 125. Cumming TB, Thrift AG, Collier JM, Churilov L, Dewey HM, Donnan GA, Bernhardt J (2011) Very Early Mobilization After Stroke Fast-Tracks Return to Walking. Further Results From the Phase II AVERT Randomized Controlled Trial. Stroke 42: 153–158. doi: 10.1161/strokeaha.110.594598
- 126. Langhorne P, Stott D, Knight A, Bernhardt J, Barer D, Watkins C (2010) Very Early Rehabilitation or Intensive Telemetry after Stroke: A Pilot Randomised Trial. Cerebrovasc Dis 29: 352–360. doi: 10.1159/000278931
- 127. Kripalani S Y (2007) Interventions to enhance medication adherence in chronic medical conditions: A systematic review. Arch Intern Med 167: 540–549. doi: 10.1001/archinte.167.6.540
- 128. Ellis G, Mant J, Langhorne P, Dennis M, Winner S (2010) Stroke liaison workers for stroke patients and carers: an individual patient data meta-analysis. Cochrane Database of Systematic Reviews doi:10.1002/14651858.CD005066.pub2.
- 129. Ostwald SK, Wasserman J, Davis S (2006) Medications, Comorbidities, and Medical Complications in Stroke Survivors: The CAReS Study. Rehabil Nurs 31: 10–14. doi: 10.1002/j.2048-7940.2006.tb00004.x
- 130. Sav A, King MA, Whityy JA, Kendall E, McMillan SS, Kelly F, Hunter B, Wheeler AJ (2013) Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expect 15: 351–359 doi:10.1111/hex.12046.
- 131. Langhorne P and Dennis M (2001) Stroke Units: An Evidence Based Approach. London: BMJ Books.
- 132. Carroll C, Booth A, Cooper K (2011) A worked example of “best fit” framework synthesis: A systematic review of views concerning the taking of some potential chemoprotective agents. BMC Med Res Methodol 11: 29 doi:10.1186/1471-2288-11-29.
- 133. Dixon-Woods M (2011) Using framework-based synthesis for conducting reviews of qualitative studies. BMC Med 9: 39 doi:10.1186/1741-7015-9-39.
- 134. Murphy E, Dingwall R, Greatbatch D, Parker S, Watson P (1998) Qualitative research methods in health technology assessment: a review of the literature. Health Technology Assessment 2: 16.