Therapeutic itinerary of stroke survivors in a Nigerian tertiary hospital

Objective: to analyze the therapeutic itinerary of stroke survivors from stroke occurrence to rehabilitation. Methods: therapeutic itinerary route taken by individuals to solve their health problems, of 12 stroke survivors was explored using in-depth interviews and was thematically analyzed. Results: stroke survivors’ routes were influenced by type of stroke and the state of the patient at onset of stroke. Lack of capacity facilitates vacillation from private to the public hospital settings. Entry into physiotherapy was dependent on self-referrals and referrals from physicians who often serve as gatekeeper of patients. Stroke significantly affected social life of stroke survivors, and the extent of stroke impairment and unmet expectations promotes medical pluralism among the survivors. Conclusion: stroke survivors are involved in intricate and lengthy therapeutic itineraries that are characterized by multiple care seeking practice. Descriptors: Complementary Therapies; Rehabilitation; Stroke; Physical Therapy Specialty. RESUMO Objetivo: analisar o itinerário terapêutico de sobreviventes de acidente vascular cerebral, desde sua ocorrência até a reabilitação. Métodos: itinerário terapêutico percorrido por 12 sobreviventes de acidente vascular cerebral para resolver seus problemas de saúde foi explorado usando entrevistas em profundidade e análise temática. Resultados: as rotas dos sobreviventes foram influenciadas pelo tipo e estado do paciente no início do acidente vascular cerebral. A falta de capacidade contribuiu para indecisão entre buscar atendimento em hospitais privados ou públicos. A entrada na fisioterapia dependeu da demanda espontânea e de encaminhamentos realizados por médicos que atuam como sentinelas dos pacientes. O acidente vascular cerebral afetou significativamente a vida social dos sobreviventes. A extensão do comprometimento do acidente vascular cerebral e expectativas não atendidas promovem o pluralismo médico entre os sobreviventes. Conclusão: sobreviventes de acidente vascular cerebral estão envolvidos em itinerários terapêuticos complexos e extensos, caracterizados pela prática de busca de múltiplos cuidados. Descritores: Terapias Complementares; Reabilitação; Acidente Vascular Cerebral; Fisioterapia. 1Obafemi Awolowo University. Ile-Ife, Nigeria. 2Bowen University. Iwo, Nigeria. 3Olabisi Onabanjo University Teaching Hospital. Shagamu, Nigeria. 4Ladoke Akintola University of Technology Teaching Hospital. Osogbo, Nigeria. 5College of Saint Mary. Omaha, USA. 6Manchester Metropolitan University, Faculty of Health, Psychology and Social Care. Manchester, UK. Corresponding author: Adekola Babatunde Ademoyegun Department of Physiotherapy, Ladoke Akintola University of Technology Teaching Hospital, PMB 5000, Osogbo, Nigeria. Email: aademoyegun@gmail.com EDITOR IN CHIEF: Viviane Martins da Silva ASSOCIATE EDITOR: Renan Alves Silva Chidozie Emmanuel Mbada1 Oluwayemisi Mary Ogunleye1 Abiola Oladele Ogundele2 Olufemi Oyeleye Oyewole3 Adekola Babatunde Ademoyegun4 Adebimpe Olayinka Obembe5 Francis Fatoye6 How to cite this article: Mbada CE, Ogunleye OM, Ogundele AO, Oyewole OO, Ademoyegun AB, Obembe AO, et al. Therapeutic itinerary of stroke survivors in a Nigerian tertiary hospital. Rev Rene. 2021;22:e60840. DOI: https://doi.org/10.15253/2175-6783.20212260840 Mbada CE, Ogunleye OM, Ogundele AO, Oyewole OO, Ademoyegun AB, Obembe AO, et al Rev Rene. 2021;22:e60840. 2 Introduction Worldwide, stroke is the second leading cause of death and third foremost cause of disability. Studies have shown that 70.0% of all stroke incidences and 87.0% of all stroke-related deaths occur in low-and middle-income countries, which includes Nigeria with stroke prevalence rate of 1.4 per 1,000(1). The burden of stroke is predicted to increase in these countries due to ongoing demographic changes, such as population ageing and heath transitions(2). Surviving a stroke can be a long-term process that affects many aspects of survivors’ quality of life. Few studies have tracked stroke survivors across continuum of care to understand the quality of care they received and their outcomes(3). While significant attention in research has been towards epidemiological studies and interventions, the routes traveled in search for solutions to health issues; known as therapeutic itinerary is largely unexplored(4). Therapeutic itinerary is the search for treatment or paths taken by individuals to solve their health problem. Therapeutic itinerary seems to be influenced by socio-cultural practices, and it is woven in multiple formal and informal networks of support to which a person belongs(5). Anecdotally, stroke survivors in desperate search for cure, sometimes embark on a number of overt and covert journeys. Considering that engaging in therapeutic itinerary that involves to decide between different types of health systems may lead to possible interactions that may impact patients recovery and outcomes. Mapping patients therapeutic itinerary may help inform policy and appropriate health education, as well as allow for better understanding of the health and illness behaviour and the undercurrent processes. Therefore, the aim of this study was to analyze the therapeutic itinerary of Nigerian stroke survivors from the point of occurrence of stroke to the period of rehabilitation in order to understand the context-specific facilitators of their health seeking behaviors or path to care. Methods 12 stroke survivors of at least six months since onset that were attending the Outpatient Physiotherapy Clinic at Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC), Ile-Ife, Nigeria, were recruited in this qualitative study(6). The study took place between December 2019 and February 2020. Eligible respondents were stroke survivors who had level of cognition of 24 points and above on Mini Mental State Examination scale and without any communication problem. An in-depth interview guide was used to collect data in this study. The interview took place in a room dedicated for this study at the Physiotherapy Department. The interview was conducted by two of the authors using an interview guide that sought information on therapeutic itinerary of patient seeking care, stages and experiences with therapy, and the undercurrent for choices of therapy (Figure 1). The interviews were tape recorded and lasted for mean period of approximately two hours for each respondent, as rest intervals were allowed for the respondents. Interviews were conducted in either English or Yoruba depending on respondents’ language of best proficiency. Yoruba language is the most widely spoken indigenous Nigerian language in the setting where this study was conducted. Translation of interviews conducted in Yoruba language into English was done by experts at the Department of Linguistics and African Languages of Obafemi Awolowo University, Ile-Ife, Nigeria. Data was analyzed in steps following Graneheim and Lundman protocols on qualitative content analysis(7). These protocols include manifest and latent content, unit of analysis, meaning unit, condensation, abstraction, content area, code, category and theme content analysis. The tape-recorded interviews were transcribed verbatim and were reviewed by authors to guarantee accuracy. Short descriptive codes were allocated to sections of the text, and codes expressing similar concepts were grouped together to form themes. Thematic content analysis of key themes and


Introduction
Worldwide, stroke is the second leading cause of death and third foremost cause of disability. Studies have shown that 70.0% of all stroke incidences and 87.0% of all stroke-related deaths occur in low-and middle-income countries, which includes Nigeria with stroke prevalence rate of 1.4 per 1,000 (1) . The burden of stroke is predicted to increase in these countries due to ongoing demographic changes, such as population ageing and heath transitions (2) .
Surviving a stroke can be a long-term process that affects many aspects of survivors' quality of life. Few studies have tracked stroke survivors across continuum of care to understand the quality of care they received and their outcomes (3) . While significant attention in research has been towards epidemiological studies and interventions, the routes traveled in search for solutions to health issues; known as therapeutic itinerary is largely unexplored (4) .
Therapeutic itinerary is the search for treatment or paths taken by individuals to solve their health problem. Therapeutic itinerary seems to be influenced by socio-cultural practices, and it is woven in multiple formal and informal networks of support to which a person belongs (5) . Anecdotally, stroke survivors in desperate search for cure, sometimes embark on a number of overt and covert journeys. Considering that engaging in therapeutic itinerary that involves to decide between different types of health systems may lead to possible interactions that may impact patients recovery and outcomes.
Mapping patients therapeutic itinerary may help inform policy and appropriate health education, as well as allow for better understanding of the health and illness behaviour and the undercurrent processes. Therefore, the aim of this study was to analyze the therapeutic itinerary of Nigerian stroke survivors from the point of occurrence of stroke to the period of rehabilitation in order to understand the context--specific facilitators of their health seeking behaviors or path to care. 12 stroke survivors of at least six months since onset that were attending the Outpatient Physiotherapy Clinic at Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC), Ile-Ife, Nigeria, were recruited in this qualitative study (6) . The study took place between December 2019 and February 2020. Eligible respondents were stroke survivors who had level of cognition of 24 points and above on Mini Mental State Examination scale and without any communication problem.

Methods
An in-depth interview guide was used to collect data in this study. The interview took place in a room dedicated for this study at the Physiotherapy Department. The interview was conducted by two of the authors using an interview guide that sought information on therapeutic itinerary of patient seeking care, stages and experiences with therapy, and the undercurrent for choices of therapy ( Figure 1). The interviews were tape recorded and lasted for mean period of approximately two hours for each respondent, as rest intervals were allowed for the respondents. Interviews were conducted in either English or Yoruba depending on respondents' language of best proficiency. Yoruba language is the most widely spoken indigenous Nigerian language in the setting where this study was conducted. Translation of interviews conducted in Yoruba language into English was done by experts at the Department of Linguistics and African Languages of Obafemi Awolowo University, Ile-Ife, Nigeria.
Data was analyzed in steps following Graneheim and Lundman protocols on qualitative content analysis (7) . These protocols include manifest and latent content, unit of analysis, meaning unit, condensation, abstraction, content area, code, category and theme content analysis. The tape-recorded interviews were transcribed verbatim and were reviewed by authors to guarantee accuracy. Short descriptive codes were allocated to sections of the text, and codes expressing similar concepts were grouped together to form themes. Thematic content analysis of key themes and phrases were used to organize data and narrations in all, quotes considered representative of themes were chosen for illustrations and to ensure readers can evaluate the transferability of the results. In order to protect the anonymity of the respondents, pseudonyms were used. Descriptive statistics of frequency and percentages were used to summarize data on the socio--demographic variables of the respondents.
Informed consent was obtained from each respondent and ethical approval for the study was obtained from the Research Ethics Committee of OAUTHC No. ERC/2019/12/20. Additionally, permission was sought from the respondents to tape record the interviews.

Results
The socio-demographic and clinical characteristics of the respondents are presented in Table 1. The mean age of the informants was 56.4 years. The respondents were mostly traders and retirees. Most of the respondents were Christians (83.3%), had ischemic stroke (83.3%), and had no co-morbidities (83.3%). Analysis of the respondents' comments yielded six themes: point of acute care, clinical care experience, physiotherapy referral, outcome, social impact, and medical pluralism. The qualitative analysis results from the study are presented in italics. At acute stage stroke survivors end up in a public or private hospital, however, they enegage in medical pluralism at chronic stage. The path taken by the respondents while seeking care for stroke is presented in Figure 2.

Point of acute care
Owing to the nature of stroke, it's being sudden or insidious influenced initiation of care and preferences. Eight respondents described the onset of their stroke symptoms as sudden. One of the informants narrated that: As a matter fact, initially I was feeling the pain on the left hand side, but I didn't know that it was stroke. All  Consequently, these stroke survivors had no strong influence on the first point of call. One of the informants revealed saying: They rushed me to a General Hospital… (P6). One other informant said: I didn't know anything; I later learnt I was carried from that place to one clinic (P11).
Informants who reportedly had insidious onset of stroke to some degree had influence on where to initiate their care. Some of the informants expressed: When it happened, I went to church… (P1). I called a friend who took me to the hospital (P3). I observed till 12 noon, then I called my child, and he took me to he teaching hospital (P9). Overall, hospitals were the first destinations for initiation of care for stoke victims in this study, except for few instances among persons with insidious onset of stroke with mild to moderate symptoms.
For those who could take steps in the early phase of the accident to seek care, they largely patronized at hospitals, especially the private settings. Teaching hospitals often receive referrals from the private hospitals in serious cases, especially when the sufferer is unconscious. An excerpt reveals: … I was there for 18 days and there was no improvement, later I was referred to the Teaching Hospital… (P7). In exploring steps taken after the incident of stroke, another informant reported: I sought advice from people who have had similar experiences either personally or it happened to someone related to them, which led to my using both medical and traditional medications (P9).

Clinical care experience
Considering that almost all the informants began their path of care of stroke through the hospitals. Their hospital experiences with acute stroke clinical care were varied. For example, one of them retorted: I was taken to the hospital the same day, but I wasn't attended to until after about 12 hours (P1). Similarly, another informant narrated his hospital experience, thus: After the stroke I was taken to the hospital that night. My wife appealed to the doctor because he was rejecting me… it took a while but they attended to me… (P4). In contrast, some other informants relished their positive hospital experiences involving immediate care or referrals as expressed in the following excerpts: …went to the hospital before 24 hours and was continuously given Augmentin ® injection, immediately, I was only referred to go for X-ray in another hospital (P12). I was referred from the emergency hospital to another hospital… (P3).
However, the first point of call hospitals seems to be limited in capability to handle stroke accidents because outright referral for tests or for onward care were common practices: I was referred from the emergency hospital to another hospital to do a brain test (P3

Physiotherapy referral
In the journey to recovery from stroke, physiotherapy plays a significant role and it is an important route to return to normal or near normal and to work. The route of entry of stroke survivors into physiotherapy for rehabilitation care was explored in this study. One of the informants revealed: I was for several years going to the hospital clinic, then my wife said to the doctor can't you refer my husband for physiotherapy. Then a woman working here [at the clinic] referred me to this place [physiotherapy clinic]. Generally, physicians (6 respondents; 50.0%) and friends and relative (6 respondents; 50.0%) were instrumental in all referrals for physiotherapy. Some of the informants stated: I was referred by a friend (P1). While others said: I was referred by the doctor (P2). This study explicated on what the informant did after being referred. Among some of the survivors, there were no significant wait times between referrals and first and subsequent appointments. Some of the informant recalls: I started early (P8), it was immediately I was referred (P12), it took about seven days before I started (P3). However, some others presented for physiotherapy late. As seen in the following excerpts: It took one and a half months after the incident (P10), it was not immediately because I didn't know there was such a thing as physiotherapy (P1), …Physiotherapist didn't come see me when I was in the ward (P4).
Still for the patients who presented for physiotherapy after referral did not receive therapy immediately, as they were either schedule for a future appointment or put on a wait list. For example, one of the informants stated: It was 3 days after presenting, that I was given appointment to come for treatment… (P5).

Outcome
This study also explored the usefulness of physiotherapy to functional outcome among the informants. Seven of the respondents, reported that physiotherapy was helpful in regaining mobility, four respondents reported pain relief, while two of them reported functional improvement, and only one respondent was able to return to work. The excerpts be-low reveal the informants' accounts: Physiotherapy has been helpful in my moving and walking around (P1). The pain has reduced too because they recommended analgesic gel (P6). Yes, I can do most things myself; I can even prepare amala [local diet made from cassava], which I couldn't do before (P6). Furthermore, an informant excitedly expressed return to work having received physiotherapy: Can you see me now (laughs). I have been able to work better; my pain has also reduced (P11). However, regaining hand function was reported only by few of the informants, and it is a bother for some of them as an aspiration that is yet to be achieved. Account of one informant reads: There have been improvements in my legs, but it remains my hands. There has been no pain (P7).

Social impact
While appreciable improvements in impairment variables were associated with receiving physiotherapy, all the informants were affirmative that their condition still interferes with social participation. For example, one of the informants narrated thus:

Medical pluralism
Empirical and anecdotal evidence indicate that stroke survivors are engaged in multiple complex trajectories in seeking treatment upon stabilization in the hospital. Assertions from the informants show these practices: I have used so many things I must not lie, when A follow up probe on the experiences with alternative practices with respect to suffering stroke revealed that one out of every two believed that it was helpful. The following excerpts captured the informants' feelings: The herbs given to me were very helpful (P6).
Pastor's prayers (P7). It was good and helpful …the herbal treatment helped me to start standing (P9). …Going to church and this (herbal home), …Have been helpful, [laughs]… (P11). But some engaged in these practices disclaimed that they give any benefits. Specifically, they said: I didn't see any difference (P3). Did not notice an improvement with it (P4).

Discussion
This study assessed the stage-to-stage journey of stroke survivors from the point of occurrence of stroke to rehabilitation period and to understand the context-specific undercurrents of their health seeking behaviors or path to care or cure. The search for therapy begins with the realization something is not right and by severity following stroke patients are more likely to consider urgent contact with emergency medical services (8) . The routes were influenced by type of stroke and the state of the patient at onset of stroke. Lack of capacity facilitates vacillation from private (which served as initial point of entry) to the public hospital settings. Entry into physiotherapy was dependent on self-referrals and referrals from physicians who often serve as gatekeeper of patients. Stroke significantly affected social life of stroke survivors, and the extent of stroke impairment and unmet expectations promotes medical pluralism among the survivors. These findings are discussed in turn in this section.
First, the finding of this study indicates that 75.0% of the stroke survivors had stroke of sudden onset and they eventually received hospital services especially in private settings. Conversely, those who reportedly had insidious onset of stroke to some degree influenced where to initiate their point of care. The level of severity of symptoms and loss of consciousness dictate preferences for health care seeking in stroke (9) . In this study, for those who could take steps in the acute phase of stroke in seeking care, they largely patronized or reported at hospitals, especially the private settings. Reasons for not seeking care from public hospital have previously been stated (10) and those seek care in public hospital teaching hospital largely because they are reputed to provide high-grade care.
Stroke survivors that began their care in hospital have varied hospital experiences. Some patients expressed delay in medical treatment at arrival, which maybe related with low-income settings. In contrast, some of the stroke survivors expressed positive hospital experiences, including immediate treatment. Patient experience of healthcare provision, including patient satisfaction, has become an important outcome measure for healthcare organizations and a mechanism to monitor quality advancement (11) . Ultimately, many of the respondents reported improved condition after hospitalization. It should be noted that patient's experience either good or bad is subjective, as there are a number of undercurrents beyond the surface.
Physiotherapy has a significant role in stroke rehabilitation and often starts within the first days and continuing into the chronic phase post stroke (12) . Prompt physiotherapy is considered as one of the most important aspects of acute treatment in a Stroke Unit (13) . The route of entry or referral of stroke survivors in physiotherapy as explored showed that physicians, and friends and relative were involved in the referrals. Authors postulated several factors for the low level of utilization of physiotherapy among physicians (14) .
This study also explored the usefulness of physiotherapy to functional outcome among the patients. More than 50.0% of the respondents reported that physiotherapy was helpful in regaining mobility, 25.0% reported pain relief, while less than 20.0% of them reported functional improvement. However, only few informants reported regaining hand function and it is a bother for some of them as aspiration that is yet to be achieved. Recovery of upper extremity (UE) functions to practical level has been considered difficult in many patients with stroke (15) . Despite appreciable improvement in impairment following physiotherapy, all the respondents claimed that their condition still interferes with social participation. This phenomenon experienced by stroke survivors, though said not to be solely explained by activity limitation (16) or motor or cognitive dysfunction, still hampers dynamics of family interaction (17) .
It is noteworthy that hospitals were the first point of call for stoke sufferers but upon stabilization they embark on multiple complex practices that are typically undisclosed to the health care providers. Communication regarding alternative medicine between patients and carers may imbibe the culture of shared decision (18) about therapeutic options for patients since it promotes patient satisfaction and active patient involvement in their care. Traditional medicine is used largely and it has rapidly growing health system and with economic relevance. In Nigeria, there is dearth of information about traditional medicine use but available data put the use of conventional nutritional supplements and alternative medicine mostly in the form of herbal products, at an estimate of about 31.9% (19) .
Concurrent use of herbal and orthodox medicines (20) causes interactions between these two forms of medicines which can lead to undesirable pharmacokinetic and pharmacodynamics effects. Till date, there is an apparent dearth of investigation on alternative practices among patients receiving rehabilitation. A follow up probe on the experiences with alternative practices with respect to suffering stroke revealed that one out of every two believed that it was helpful. Advocates of alternative medicine hold that the various alternative treatment methods are effective in treating a wide range of major and minor medical conditions, and contend that some published research proves the efficiency of specific alternative treatments (19) .
The participants in this study consisted of volunteers and they were recruited conveniently. These respondents might have different itinerary compared to those who were not interested in the study and this may limit the transferability of our findings. Also, we could not evaluate respondents' therapeutic itinerary to their socio-demographic variables. It is possible that level of income, for instance, may influence therapeutic itinerary of stroke survivors.

Conclusion
From this therapeutic itinerary study, it was found that stroke survivors transitioned from the private to the public health sectors. The primary point of care that may be close enough to the patients seem not adequately equipped to care for stroke thus necessitating referrals and all its consequences. It was found that physiotherapy was not a compulsory stereotype for stroke survivors in the acute phase, possibly due to late referral from medical practitioners with first contact. It was also seen that the therapeutic itineraries of stroke survivors included alternative medicine practices combined with conventional medicine. Conclusively, stroke survivors are involved in intricate and lengthy therapeutic itineraries that are characterized by multiple care seeking practice.