Post-Stroke Fatigue: Survivor Insights

Summary

This chapter explores the stroke survivors’ experiences and perceptions regarding Post stroke fatigue (PSF). One to one semi-structured interviews were conducted with stroke-survivors’ diagnosed to with fatigue based on the Fatigue Severity Scale (FSS). Eight participants were recruited using a purposive sampling technique. Face-to-face interviews with participants were recorded, transcribed verbatim and analysed using inductive thematic analysis(Braun and Clarke, 2006) . Validity was ensured through data triangulation with participants.

Background

The results from chapter 2 (systematic review) revealed that further studies to develop effective treatment for PSF are needed. Using experience-based methods and co-designing strategies to devise patient related services and to improve patient, carer and staff experience is always valuable (Borgstrom and Barclay, 2019). It is essential to understand patient’s perspectives and their experiences of PSF in order to develop an effective physiotherapy intervention to alleviate their PSF related symptoms. This qualitative study was developed based on the findings of the systematic review and literature. To our knowledge, this is the first attempt to understand PSF among stroke-survivors living in Saudi Arabia. This study aims to explore the experiences and perceptions of post-stroke fatigue (PSF) among stroke survivors. Despite PSF’s subjective nature, only little has been concentrated on the introspective dimension of PSF in many reviews. Colle et al. (2006)’s review on PSF included quantitative studies, but disregarded qualitative studies which would have furnished further information. Had the review included qualitative studies, they would have strengthened the findings from the quantitative studies. Defining PSF is challenging due to its complex biopsychosocial elements and its ‘inherent subjectivity’ (Aaronson et al., 1999, Thomas et al., 2019). Despite PSF being a frequent issue, it was not discussed in two comprehensive qualitative reviews of stroke (McKevitt et al. 2004, Salteret al. 2008). The available literature on PSF is sparse and only few qualitative studies have been conducted on PSF. This lack of research in this area is evident through a number of reviews. In a qualitative meta-synthesis (Eilertsen et al, 2013) that included 12 studies that studied stroke survivors’ experiences of fatigue, only four have explicitly identified PSF in their aims (Flinn and Stube, 2010; Barbour and Mead, 2012; Kirkevold et al, 2012; White et al, 2012). The results showed that fatigue significantly impacts the life of stroke survivors by affecting their cognition, involvement in activities, and participation in rehabilitation. The primary aim of this interview study is to explore the perceptions, experience and views abuts, strategies to cope with PSF, and the type of support offered from HCP and their caregivers regarding PSF. The understanding of PSF from stroke survivor’s point of view may enhance knowledge about PSF, and to understand the current situation before designing the physiotherapy intervention to treat PSF.

Methods

Research approach

Qualitative research can be carried out using various methods, and it involves an interpretive and naturalistic augmentation to the subject matter under discussion. Qualitative researchers try to make sense of or decipher the phenomena in terms of meanings by observing things in their natural settings (Anastas, 2004). This method of research involve using a number of empirical materials such as interviews, life stories, case studies, personal experiences, texts that are observational or historical or interactional and visual – all these materials that characterise regular and significant moments and meanings in a person’s lives (Denzin & Lincoln, 1994, p. 2)(Anastas, 2004). Qualitative research is inquiring in nature and is helpful, especially when the researcher is unaware of the context to be studied. Such an approach is essential when the research topic is new and has not been addressed earlier in a particular group, or when the existing theories are irrelevant to the group which is being studied (Morse, 199 1)( Creswell, 2016,p. 21). Qualitative research designs are flexible and iterative, thereby newer concepts emerge throughout the research and demand the researcher to change and adapt continuously in line with the emerging themes ((Creswell and Creswell, 2017), Ohman, 2005). By allowing flexibility to a great extent, qualitative research differs significantly from quantitative work. Many researchers who exclusively work on rehabilitation have started to recognise the need to use qualitative research methods as they explore the complex human phenomena in detail (Ohman, 2005). As the outcomes of rehabilitation are entirely dependent on patients’ attitudes, thoughts and motivation, and the whole process in itself rely on social interaction, using a qualitative research design to study these phenomena can be helpful to develop and improve rehabilitation techniques and outcomes (Ohman, 2005). Qualitative methods assist in bridging the gap between clinical practice and scientific evidence, and can explore the clinicians’ and patients’ beliefs, attitudes and preferences. The significance of qualitative research methods is dependent on their capacity to systematically seek the types of questions and research topics which may not be quickly answered by other experimental methods (Green and Britten, 1998). In addition, personal experiences influences better than scientific publications in changing various aspects of the clinical practice (Green and Britten, 1998). All these significant attributes of qualitative research along with the suitability of the research aim answerable using this approach has made the researcher to use interviews as the method of data collection.

Study Participants

Sampling Method:

Purposive sampling is a non-random method of participant recruitment and does not require any set theories or a pre-determined number of participants, and the researcher decides the suitable source from where the potential participants can be approached for participation. Purposive sampling is most commonly used in qualitative research methods as it helps in selecting and utilising the participants who are well informed and proficient with the topic of interest (Etikan et al., 2016, Creswell, 2016). Maximum variation is a key and most frequently used method among the purposeful sampling techniques (Sandelowski 1995). In this method, a broad range of individuals, institutions or settings is purposively chosen so that all or almost every type of the selected participants are explored. This helps in expressing the wide spectrum of perspectives of the included participants that demonstrate the intricacy of the world (Creswell, 2002) (Onwuegbuzie and Leech, 2007).

Study design and Data collection

Eligibility criteria

Participants who met the following criteria were eligible to be included in the study:

• Adult (18 years or more) stroke patients

• Men or Women

• Must be at least one-month post-stroke at the time of participation in the study

• Had previous physiotherapy treatment or is currently enrolled in physiotherapy treatment for post-stroke rehabilitation/management.

Participants who have any of the following conditions were not eligible for inclusion in the study:

• Stroke patients with another central nervous system disease

• Any other medical condition that could aggravate fatigue

• Inability to communicate due to cognitive impairment, dementia or aphasia.

Recruitment

The researcher (WA) had a meeting with the directors of the stroke units of the King Fahad Medical City hospital (KFMC) and Sultan Bin Abdulaziz Humanitarian City hospital (SBAHC) and explained to them the purpose of the study as well as the inclusion and exclusion criteria for participation. WA also furnished the directors with all the required documents such as the consent forms, participant information sheets, and the FSS to assess the patients’ eligibility for inclusion in the study. The directors facilitated recruitment through the staff in their respective departments. Patients who were undergoing stroke rehabilitation in each of the hospitals were told about the study, and interested participants were screened for eligibility as per the inclusion and exclusion criteria. This process of recruitment was carried out by the clinical staff in both the hospitals using the eligibility criteria, independent of the researcher’s (WA) involvement. Eligible participants were asked to sign the consent forms, which were then handed over to WA by the staff from the hospitals along with the contact details of the participants. WA coordinated with the participants through the clinical team in each of the hospitals to set up a suitable time for the interview to be conducted. Ten participants expressed an interest in participation from KFMC, but only six were eligible for inclusion. In total, six participants were interviewed from KFMC, of which four were male and two females. The recruitment from SBAHC was slow due to the delay in obtaining local ethical approval, and only five interested participants were screened, of which two female patients were eligible for inclusion, and interviews were conducted with both of them.

Ethical considerations

The university ethics committee of the University of Nottingham approved this research study – Ethics No. 2631603 (Appendix -). Local ethical governance approvals from King Fahad Medical City (IRB No: 00010471) and Sultan Bin Abdulaziz Humanitarian City (SBAHC) were also obtained (Appendix - ). All the participants included in the study were informed in detail about the aims of the study and were given a participant information sheet for them to read and understand. Informed written consent was obtained from the participants before the interviews.

Interviews

A semi-structured interview with open-ended questions was used to collect data for this research. These open-ended questions formed the interview guide (Appendix ) and were based on the results of a systematic review conducted earlier by the researcher (WA) (Chapter - 2), an in depth literature review and to meet the objectives of the study. In addition to the key information collected using the interview guide, other data such as sociodemographic information, medical history, fatigue severity scale (FSS) scores, functional activity levels and physiotherapy interventions received were also recorded (Appendix ). All the interviews were conducted in person by WA, and they lasted between 30 to 60 minutes. The interviews took place in a comfortable meeting room in the corresponding hospitals where the patient was receiving physiotherapy intervention. The interviews were conducted in the Arabic language, as not all the participants were proficient in English, and they would be feeling comfortable in conversing in their mother tongue (Arabic) on a topic like post-stroke fatigue. The interview was recorded using a digital recorder. The recorded interviews were then transcribed verbatim by the researcher. As the transcripts were in Arabic language, it was translated into English by WA whose first language is Arabic. These translated transcripts were then back-translated by individuals who were not associated with the research, but are proficient in both Arabic and English. Words or lines where there were discrepancies were discussed with the same individuals, and suitable English terms were selected.

Data analysis

An inductive thematic analysis was performed on the translated interview transcripts. Thematic analysis is a widely used qualitative method which helps in identifying, analysing and reporting themes/patterns within the data that is being analysed. Also, on many occasions, a thematic analysis carries out further interpretation of various aspects of the research area (Boyatzis, 1998). A theme records essential information about the data with regards to the phenomena of interest and will depict patterns of responses or meanings within the data that is being analysed. Such themes or patterns occurring within the data can be determined by either an inductive or ‘bottom-up’ way (Frith and Gleeson, 2004) or by a theoretical or deductive or ‘top-down’ way (Boyatzis, 1998; Hayes, 1997). In an inductive approach, the themes that are identified are found to be strongly linked to the data from which it is extracted (Patton, 1990), and these themes may have a minimal relation to the questions that were asked to the participants, and may not be in line with the theoretical interest of the qualitative researcher carrying out the research. It is, therefore, a process in which the data is analysed without trying to set it into an already existing coding frame, or with the researcher’s preconceived impressions and ideas. All these attributes of an inductive thematic analysis make it a data-driven approach of qualitative data analysis (Braun and Clarke, 2006). According to Braun and Clarke (2006), thematic analysis constitutes six key phases namely - familiarising with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. This qualitative research was conducted following these six key phases of thematic analysis.

Quality and rigor

Several approaches are available in the area of qualitative research in order to make sure bias is prevented, and the reliability of the findings is enhanced (Mays and Pope, 1995). In this current study, the triangulation technique (Guba and Lincoln.,1994; Hussain,2009; Torrance, 2012) was employed in order to ensure the validity of the study and to prevent researcher bias and correct the issues of reproducibility and generalisability.

Credibility (internal validity)

The researcher made efforts to promote confidence and to accurately gather the data that the research question was interested in looking at. The researcher actively engaged with the participants by interacting with them informally before the beginning of the interview, and also made sure that they had enough understanding of the activities that will take place as part of the interview. The sampling technique of maximum variation added with the help of recruitment blinded from the researcher has eliminated the possibility of researcher bias and has increased credibility. The participant information sheets given to the participants clearly mentioned the option to refuse participation, thereby ensuring only interested participants take part in the study.

Transferability (external validity)

As the study is on a limited number of participants, there is a potential for an inability to link the findings from this study to other research on other populations. To efface this problem, the entire methodology of this research was provided in detail, starting from the initial approach to recruit participants to the theoretical basis of the data analysis method chosen.

Dependability (reliability)

This research was carried out after extensive discussions on the research design and other particulars such as recruitment strategy and data analysis among the research team. This helps ensure reliability in order to duplicate the study in a different context. The research design and data collection procedures were discussed thoroughly in the earlier sections to make sure this work is reliable.

Results

Study participants

Four men and four women aged between 27 - 65 years (mean 52, SD =14) were interviewed from the two biggest rehabilitation centres (KFMC & PSBHC) in Riyadh, KSA between April to June 2018. The duration of the interviews was ranging from 15 to 40 min (mean 25.5, SD 9.4). All the participants were married. Five participants had university-level education and 2 still high school, and 1 participant completed primary school. Three participants were retired from work, two were not working due to illness, and 2 changed their work to part-time due to the illness, and one was in full-time work at the time of the interview. All participants had physiotherapy treatment after stroke from 1 to 4 months (mean 2.4, SD1.1) with a uniform duration of 60 min per session. Frequency of physiotherapy varied among them - 2 had one session weekly, 3 received two sessions per week, and 3 had sessions daily (Table 1). The onset of stroke among the participants varied from 2 - 24 months (mean 8, SD 7.8). There was mixed typed of stroke such as MCA, ischemic and infarction induced stroke. Four participants had left hemiparesis, and 4 had right hemiparesis. All the participants have some form of past medical history, such as diabetes mellitus, hypertension, except one young participant who is free of any medical history. The FSS scores in the participants varied from 4.5 - 6 (mean 5.3, SD 0.5) (Table 2). Functional levels were between independent to modified independent and most of them also had good balance. Regarding physiotherapy interventions, all participants received stretching exercises, strengthening exercises, endurance and gait training, educational and home exercise program. Out-patients had twice a week physiotherapy session while rehab inpatients had daily physiotherapy sessions. All the sessions were of 60 minutes in duration.

Discussion

The aim of the study was to explore the post stroke fatigue related perceptions among stroke patients being treated in the rehabilitation center in Saudi Arabia. Five main themes emerged from the study. Most important findings such as stroke patients showing different experiences of PSF (physiological and psychological symptom), stroke patients trying to understand and make sense about the causes of PSF (physiological and psychological causes), PSF has negative impact on activities , and participations, stroke patients try to cope with PSF using different ways such as pacing, self-motivations and social participations were revealed. Another key finding is that stroke survivors are not receiving enough support from HCPs and their caregivers are not prepared as well. Also, the role of physiotherapy to treat PSF is not always being motivational and satisfying for the stroke survivors to stick to it. This study has revealed the experience of PSF is always overwhelming and difficult to deal with. Furthermore, the impacts of PSF on the victims’ life damaging and far reaching. For instance, this study has confirmed the findings of other studies that victims of PSF experience certain physiological difficulties such as exhaustion and lack of energy; as well as psychological difficulties including anger, a feeling of unhappiness, emotional instability and poor concentration. The study has also established that PSF has certain impacts that are detrimental to the victims’ ability to live their normal lives. For instance, the results have shown that PSF victims sometimes become unable to engage in activities of daily living such as engaging in leisure activities, outdoor walking, long-distance driving, visit the toilet or even eat. These findings tie to the biopsychosocial model of health that can help PSF victims look find solutions to some of their problems. Believers in the biopsychological model could look at the experiences of PSF victims in three major contexts. The first context would be to look at the biological factors of PSF such as illness and trauma that has significant impacts on the victims (Katrine et al 2011). For solutions on these factors, the victims could visit a therapist for medication and therapy prescription, which underscores the importance of healthcare professionals in caring for individuals with PSF. The second context of viewing the experiences of PSF is the psychological context, which considers the experiences that brings pain into the victims’ lives (Wu et al 2017). Here, according to (Worthington et al, 2017), emphasis is put on the victim’s thoughts and feelings that often develop into the patients’ beliefs about themselves such as a feeling of low self-worth, or a feeling of low self-worth and self-esteem. For solutions in this context, therapy is most preferred because it helps the victims recognize the negative and lies thoughts about their value so that they begin to experience how valuable they truly are.

The third context of looking at the experiences of PSF is the social environment, i.e. the events that occur in the victim’s world right now (Wu et al 2017). Based on the study findings, the limitations experienced by victims such as inability to drive for long hours, cooking eat, attend family gatherings or go to the toilet may cause various social ramification such as family stress, unemployment and job pressures. Furthermore, the victims might be involved in accidents or injuries. Therefore, the victims need to figure out how to deal with these issues. One of the most effective solutions in the social context are considering the victims’ boundaries and how they can develop self-care abilities. This might entail acquiring a wheelchair to help with movement or avoiding long driving hours to eliminate the risk of accidents. Against this backdrop, the biopsychological model of health provides an effective framework for helping PSF victims cope and manage different situations in different contexts that otherwise would have been difficult to maneuver. However, considering that much of the research on biopsychological model focus on mental healthcare (Wu et al 2017), more research is needed on the model’s application to stroke and PSF. The findings of this study also reveal various ways through which PSF victims cope with their situation as well as the role of healthcare professionals and caregivers in helping them cope and manage their situation. The treatment options for PSF Victims and what can be done to manage their situation ties back to the International Classification of Functioning, Disability and Health (Wong et al, 2018). The ICF recognized that victims of health conditions such as PSF have different needs that must be addressed differently or tailored to the victims’ health situation (Wong et al, 2018). Every individual with PSF is unique and has different needs and abilities. Therefore, therapies and treatments that work for an individua might not work for another individual or in another situation (Wong et al, 2018). To help PSF victims survive, it is important for caregivers and healthcare professionals to understand each victims’ unique challenges and strengths and focus on this in care or therapy. Thus, according to ICF, successful care for patients with health conditions such as PSF needs collaboration between healthcare professionals, families and community services with the objective of enabling victims participate in the society to their best capacity regardless of their ability or disability to do things.

Th ICF provides a framework and approach to help identify and understand individuals with unique functional needs and abilities (e.g. those with PSF). The ICF divides PSF into three interconnected parts that correlate in such a way that one part can influence change in the other two parts (Wong et al, 2018). The first part is body structure, which helps understand how body parts work. The second part is involved activities and participation, which explains how individuals interact with the world and the activities they do. The third part entail the contextual factors which involve personal and environmental factors. Using the ICF approach might be considerably useful in helping caregivers and healthcare professionals to understand the victims’ strengths and challenges, effectively communicate the victims’ functional needs and make informed decisions reading the victims’ healthcare. First, as highlighted in the findings, PSF victims suffer from tiredness that affects their body structure and function. Based on the ICF’s definition, body structure and functions include for example legs, hands and muscles together with their functions (Wong et al, 2018) that PSF victims might find it difficult to engage while performing various activities. To address these difficulties based on ICF model, therapeutic interventions like muscle stretching and strengthening can positively influence the body’s structure and function. However, because different PSF victims might have different challenges, interventions that work for one victim or in one situation might not work in another patient or situation. Therefore, one significant practice implication of this study is that healthcare providers together with caregivers should identify the therapeutic interventions that might work better in a patient or situation (Wong et al, 2018). The other part of ICF’s model that applies to the findings of this study is activity and participation. According to ICF (Wong et al, 2018), activities are the completion of tasks that people do daily. In this scenario, activities might involve driving, going to the toilet, watching movies or climbing stairs. On the other hand, participation refers to being involved in normal life situations such as attending social gatherings, engaging in social activities or walking to move around. The results of this study show that most of the participants had difficulties and limitations to engage in all these activities and participations, which ICF terms as ‘limited participation’. To promote the victim’s activity and participation, caregivers and healthcare professionals can figure out how best to encourage and enable the victims participate in various activities of daily living such as gong to work or having fun with family and friends. For example, medical care can support PSF victims buy providing them with motorized wheelchair to move around. The third and last part of the ICF model that applies to current study are the ‘contextual factors.’ Here, according to ICF (Wong et al, 2018), emphasis is put on the things about an individual or the environment that negatively or positively affects their ability to live their daily lives. For instance, in the current study, some of the personal factors that affects the individual are beliefs about their self-worth and self-esteem while typical environmental factors emergent in this study are people’s attitudes of family and society. A sense of low self-esteem can affect PSF victim’s interaction with others and may lead them into self-isolation (Wu et al, 2017). Similarly, environmental factors such as steep staircase my hinder the victims’ ability to access some areas of the house. To address these challenges, according to Wu et al (2017), healthcare professionals and caregivers can facilitate the victim’s increased sense of high self-esteem by including them in various activities and making the feel as part of the family. Therapists should think of the victim’s overall development and assist where possible.

Conclusion

This study has revealed the impact of PSF on stroke survivor’s life, and their lack of awareness regarding PSF and its symptoms. This study has also highlighted some potential techniques that could be incorporated into the design of a physiotherapy intervention to treat PSF, most important of it is the element of motivation that increases the involvement of patients during physiotherapy sessions. Educating stroke patients and their caregivers on PSF is essential in the effective management of PSF. This study has explored victims’ experience of PSF and identified several health and well-being issues associated with the condition. Clearly, PSF affects individuals’ ability to engage in activities of daily living through various psychological and physiological factors. Therefore, healthcare professionals as well as family caregivers have a significant role to play in caring for PSF victims to ensure that their participation in the society is not hindered. Consequently, the study has identified two different models (i.e. the ICF model and the biopsychosocial models) through which the conditions of PSF can be understood with an aim of offering effective solutions to the challenges presented by the condition. This implies that healthcare practitioners as well as family caregivers must develop a comprehensive understanding of the principles and application of the two health models to facilitate better management of PSF. Similarly, more research is needed in the field of PSF to understand how these models can better be applied PSF.

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