Experiences Of Stroke Survivors Research Articles

Development of a Situation-Specific Theory for the Transition of Survivors of Stroke With Dysphagia.

The process by which stroke survivors move toward health while facing various difficulties can be construed as a "transition." Importantly, nurses need to understand and support this state of transition effectively. This study developed a situation-specific theory to explain post-stroke transition by integrating the findings of a qualitative study that explored the rehabilitation experiences of stroke survivors with dysphagia with a scoping review of qualitative studies using the theoretical framework of transition theory. This theory will help understand the transitions that stroke survivors with dysphagia undergo during recovery and provide a framework for exploring nursing care to support healthy transitions.

CSP2023: 469 - 'Caged in hell or unable to escape': the lived experiences of adult stroke survivors in rural Nigeria

CSP2023: 469 - 'Caged in hell or unable to escape': the lived experiences of adult stroke survivors in rural Nigeria

Post-stroke diabetes management: a qualitative study.

Diabetes is associated with an increased risk of stroke. In many cases, a diabetes diagnosis may predate a stroke; however, diabetes is often diagnosed during the hospital admission following a stroke. To explore the experiences of stroke survivors as they cope with a new diabetes diagnosis, particularly regarding developing an effective strategy for managing the disease. A qualitative grounded theory approach was used that employed focus group interviews with participants, including clinicians and stroke survivors, to develop a holistic understanding of primary and secondary stroke care services and the experiences of those accessing them. Clinicians believed they were not optimally equipped to manage diabetes as a condition. They believed more emphasis should be placed on self-management, which would be better managed by lifestyle changes than medication alone. Conversely, stroke survivors with diabetes experienced an additional burden associated with the diagnoses but relied on clinicians to manage their diabetes and believed the clinicians were failing if they were unwilling or unable to achieve this. The research highlights the tensions between stroke survivors and healthcare professionals. Stroke survivors relied on the healthcare teams to provide the optimal treatment when they had recently undergone a significant health event where they had experienced a stroke and received a diabetes diagnosis. However, the healthcare teams, while recognizing the importance of a holistic and comprehensive treatment package, struggled to provide it due to resource limitations. To optimize post-stroke diabetes self-management education, a strategic framework that prioritizes patient empowerment and interdisciplinary collaboration is paramount. Tailoring educational interventions to align with individual patient profiles-considering their unique health status, personal preferences, and cultural context-is essential for fostering self-efficacy. Such a strategy not only empowers patients to take an active role in managing their diabetes post-stroke but also contributes to superior health outcomes and an elevated standard of living.

The Role of Spirituality in Stroke Survivors and Their Caregivers: A Systematic Review.

Although several studies have analyzed the effects of spirituality on stroke survivors' physical functioning and their caregiver's outcomes, no systematic review or meta-synthesis was found to identify the lived experiences of stroke survivors and caregivers regarding spirituality. For these reasons, this study aimed to analyze quantitively and qualitatively research relating tostroke survivors' and caregivers' experiences. The included studies were RCT studies, quasi-experimental studies, qualitative, descriptive, ethnographic, and phenomenological studies, and cross-sectional studies(n= 37), with a total of 6850 stroke survivors and 1953 caregivers enrolled. Spirituality appears to play an important role in improving the quality of life and decreasing anxiety and depression of both stroke survivors and their caregivers.

Aphasia Depression and Psychological Therapy (ADaPT): Perspectives of People with Post-Stroke Aphasia on Participating in a Modified Cognitive Behavioral Therapy.

Aphasia, a communication disability commonly caused by stroke, can profoundly affect a person's mood and identity. We explored the experiences of stroke survivors with aphasia and depression who received a modified cognitive behavioral therapy (CBT)-based psychological intervention. The therapy is manualized with a flexible treatment protocol, including 10 individually based therapy sessions (+2 booster sessions) either via telehealth or in person. Six participants with chronic aphasia (60% of the total sample) participated in in-depth interviews that were analyzed using reflexive thematic analysis. Two core themes were derived from the data: the first theme, helpful elements of therapy-doing enjoyable activities, new ways of thinking, problem solving, working with the experienced therapist, and using telehealth; and the second theme, making progress-mood, communication, acceptance of the 'new me', and improving relationships. All participants found the therapy to be helpful in managing mood problems with various elements being beneficial depending on the individual, highlighting the importance of tailoring the intervention. Therefore, delivering modified CBT to individuals with aphasia is likely to be acceptable both in person and through telehealth. Further evaluation of the intervention and its impact on mood would be beneficial.

Questioning loneliness: an exploration of the research discourses related to stroke survival in a remote rural community in Scotland

This paper reflects on a pilot study exploring the loneliness experiences of stroke survivors living in remote rural communities in Scotland. Empirical evidence gathered at the time of establishing this study demonstrated that there were no studies published around the subjective experiences of stroke survivors living alone in remote rural Scottish communities. Yet, stroke survivors in rural settings in other parts of the world report a longing for social contact as well as the experience of a reduction in participation in shared activities, suggestive of potential loneliness and isolation. This paper focuses on our experience interviewing one participant recruited in the early stages of the COVID-19 pandemic. Due to the pandemic, the study had to be terminated, but we were left with data gathered from this one conversation which revealed a rich narrative centred around past and present occupations. At no point was there any sense of loneliness expressed, despite the context within which this participant lived: alone, in a remote community, experiencing a degree of communication difficulties and unable to leave the house independently. All commonly hallmark ‘warning signs’ of a person at risk of loneliness. In this reflection we offer perspectives on assumptions and expectations of loneliness that are problematically constructed by the dominant narratives and theories at the time.

Experiences With Mobile Health-Enabled Ambulatory Monitoring Among Stroke Survivors: A Qualitative Study.

Inquiring into the experiences of stroke survivors toward ambulatory monitoring is crucial for optimizing user adoption, design, implementation, and sustainability of ambulatory monitoring in the stroke population. This study was aimed to identify facilitators and barriers for ambulatory monitoring among stroke survivors, as well as their suggestions for development and implementation of ambulatory monitoring. We conducted individual semi-structured interviews with 40 stroke survivors who received ambulatory monitoring. The interviews were analyzed using thematic content analysis. Six themes about facilitators associated with ambulatory monitoring emerged: (1) user support, (2) technological features, (3) convenience, (4) personal strategies, (5)social influence, and (6)time commitment. Three themes about barriers to using ambulatory monitoring emerged: (1) personal factors, (2) functionality, (3) study design. Three themes about suggestions emerged: (1) personalization, (2) functionality, and (3) interactive feedback. As mobile health technology is becoming more popular, the findings of this study provide timely implications and practical considerations for ambulatory monitoring in the stroke population.

“Coming home was a disaster, I didn’t know what was going to happen”: a qualitative study of survivors’ and family members’ experiences of navigating care post-stroke

Purpose Understanding navigational barriers and facilitators has the potential to advance equitable stroke care delivery. The aim of this study was to explore, using a qualitative study, the experiences of stroke survivors and their families as they journey through the stroke care system, both before and during the COVID-19 pandemic. Methods In-depth semi-structured interviews were conducted with 18 stroke survivors and 12 family members during 2021 and 2022. Participants were recruited through voluntary organisations, social media, and stroke support groups. Data analysis followed a systematic process guided by the framework method with steps including familiarisation, coding, framework development, and charting and interpretation. Results The experiences of navigating stroke care were particularly challenging following discharge from hospital into the community. Barriers to stroke care continuity included insufficient appropriate services and information, unsatisfactory relationships with healthcare professionals and distressed mental health. There were particular navigational challenges for survivors with aphasia. Facilitators to effective navigation included having prior knowledge of the health system, harnessing support for care co-ordination, and being persistent. Conclusion Greater support for patient navigation, and person-centred referral pathways, particularly during times of increased pressure on the system, have the potential to improve access to services and wellbeing among stroke survivors.

In search of self after stroke: a longitudinal qualitative study in the context of client-centred rehabilitation

ABSTRACT Purpose The aim was to illuminate the experiences of stroke survivors returning to everyday life in the year following stroke, in the context of client-centred rehabilitation. Methods Four men who participated in a client-centred rehabilitation program were followed during the first year after stroke. Semi-structured interviews were conducted, allbut the first in the participants’ home. The data were analysed using a grounded theory approach. Results The results revealed a process with the overarching core category; The “new” self becomes reality through challenging everyday experiences, and five main categories driving the process: 1) Striving for structure in a “new” chaotic world, 2) Homecoming an ambiguous experience, 3) Reaching the “new” self through reflections of self-understanding, 4) Socialising in new circumstances, and 5) Realising a new reality. Conclusions While in hospital, stroke survivors can have unrealistic expectations. When at home they can begin to realise their actual capacity . To find a “new” self after a stroke can involve time-consuming and taxing processes of reflections of self-understanding. Engagement in self-selected meaningful and valued activities can support stroke survivors’ reconstruction of the “new” self but not all stroke survivors may succeed in finding their “new” self during the first year after stroke.

The dyadic self-care experience of stroke survivors and their caregivers: A qualitative descriptive study.

Promoting self-care is the core response strategy of the global health system to the burden of stroke. Although self-care in stroke represents a dyadic phenomenon, the dyadic self-care experience of stroke survivors and their caregivers is often overlooked in clinical practice. The aim of this study was to explore the dyadic self-care experience of stroke survivors and their caregivers. A descriptive qualitative design was used to conduct the study. The Consolidated Criteria for Reporting Qualitative Research was used for study reporting. A total of 21 stroke survivor-caregiver dyads were recruited for this study between May 2022 and September 2022. Data were collected through semistructured interviews and analyzed using thematic analysis. In this study, four themes were identified: (1)poor relationship quality of the dyads, (2)dyadic incongruence in managing stroke,(3)a slow and tiring dyadic self-care processand (4)happy cooperation in coping with dyadic self-care. Healthcare professionals should give greater consideration to the contradictions and disparities that may arise between stroke survivors and caregivers during the self-care process. It is crucial for them to provide personalized and tailored support and interventions that can assist these individuals in achieving a more optimal balance in their dyadic self-care. Patients were involved in the formulation of interview questions forthis study. No members of the public wereinvolved in this study.

Challenges and Experiences Faced by Physiotherapists in Stroke Rehabilitation: A Qualitative Study

ABSTRACT Introduction: Stroke is one of the leading causes of death and disability in India and rehabilitation therapy is underdeveloped. Neurorehabilitation is a program that caters to people who have disabilities to help them attain and maintain optimal performance. The majority of people with disabilities are economically underprivileged and have trouble getting access to basic health care (including rehabilitation). Physiotherapists also face limitations in providing services to stroke survivors and this study is to identify those challenges. Objective: The objective of this study is to identify the limitations faced by physiotherapists during stroke rehabilitation. Material and Method: In November 2022, a focus group discussion was held with a sample size of 12 physiotherapy residents from neurorehabilitation and community rehabilitation working in a tertiary hospital. After consent was taken, audiovideography was recorded, transcripted, and documented. Data were thoroughly transcribed, and thematic analysis and characteristics were established. Results: After extraction of codes and themes, the following results were found. General categories of themes are lack of awareness on stroke and physiotherapy, infrastructure, financial constraints, family dynamic, social health, amotivation and mental health, collaboration limitations, problems in-home services, and the impact of COVID-19 pandemic on rehabilitation. Recommendations given by the participants were creating a stroke community, availability of more insurance companies to support and provide relief for financial stress, early education and awareness on stroke from school level, active participation of caregivers and family members to assist the patient in home-based therapy, and availability of NGOs that cater specifically to physiotherapy. Conclusion: It was concluded that neurorehabilitation in India needs to attend to the given categories. Policymakers must be aware of the financial and social issues that stroke survivors experience and enact legislation that will decrease mental and financial stress.

Exploring community reintegration among Nigerian stroke survivors.

Community reintegration is one of the ultimate goals of stroke rehabilitation. The increasing burden of stroke morbidity by other non-communicable diseases in Nigeria indicated the need for our study. The authors explored the factors contributing to successful community reintegration among Nigerian stroke survivors. We conducted an explorative qualitative study design to achieve this aim using in-depth semi-structured interviews with 12-purposively sampled stroke survivors. Three overarching themes emerged: restriction of participation experienced by stroke survivors, activity limitation as pointers to the quality-of-life experience of stroke survivors and enablers or barriers to community reintegration for stroke survivors. Among the core, sub-themes included incapability of returning to work, difficulty performing domestic activities, social isolation or separation, recreation and leisure time. Enablers of community reintegration included creating a positive mindset, encouragement and social support, while barriers included mobility and speech or language challenges. Stroke survivors have challenges in returning to work and experience varying levels of activity limitation, which affects their quality of life with identifiable enablers or barriers to community reintegration. Stroke survivors with severe functional deficits should be monitored closely and given further rehabilitative assistance to aid functional recovery, thereby facilitating community reintegration.

Exploring the life experiences of stroke survivors in Nigeria using the interpretive phenomenological analysis

BackgroundThe consequence of living as a stroke survivor has received significant attention in literature from different parts of the world. Enriching social relations and other factors are reported to influence the post-stroke experience. Differences in health systems, cultural factors and available resources have made it apt to explore the experience of life after a stroke in Nigerian stroke survivors. This study explored the lived experiences of Nigerian adult stroke survivors, with a focus on their concerns, hopes, dreams and daily routine experiences.MethodsThis qualitative study employed a phenomenological approach based on in-depth interviews with stroke survivors. Interpretative phenomenological analysis was used to analyse the in-depth exploration of the personal experiences of these stroke survivors and the meanings they attached to that experience.ResultsThe participants in this study described their experiences, emphasising both the visible loss of mobility and emotional issues related to their condition. Three superordinate themes were identified: (1) stroke presentation; (2) affect, coping, and adaptation; and (3) social supports.ConclusionThe study concluded that the experience of Nigerian stroke survivors is unique as it is a blend of supportive and non-supportive care scenarios, which is greatly associated with environmental and other intrinsic variables. Post-stroke mobility strongly influences the overall stroke experience.

A tension between surrendering and being involved: An interview study on person-centeredness in clinical reasoning in the acute stroke setting

ObjectiveTo explore how stroke survivors experience and prefer to participate in clinical reasoning processes in the acute phase of stroke care. MethodsAn explorative qualitative design was used. Individual interviews were conducted with 11 stroke survivors in the acute phase of care and analyzed using reflexive thematic analysis. ResultsThe analysis identified five themes: What’s going on with me?; Being a recipient of care and treatment; The need to be supported to participate; To be seen and strengthened; and Collaboration and joint understanding. ConclusionStroke survivors experience many attributes of person-centeredness in the acute phase of care but, according to their stories, their participation in clinical reasoning can be further supported. The tension between surrendering and the desire to be more actively involved in the care needs to be considered to facilitate participation in clinical reasoning. Practice ImplicationsStroke survivors’ participation in clinical reasoning in the acute phase can be facilitated by health professionals noticing signs prompting a shift towards increased willingness to participate. Furthermore, health professionals need to take an active role, sharing their expertise and inviting the stroke survivors to share their perspective. The findings can contribute to further develop person-centered care in acute settings.

Qualitative study exploring heterogeneity in caregiving experiences post-stroke in Singapore

ObjectiveStroke, a common illness in older adults, accounts for up to 4% of direct medical costs in developed nations. Informal caregiving contributing a significant proportion of economic burden post-stroke warrants...

Hurdles Faced by Stroke Survivors and Their Caregivers in India: A Qualitative Study

Background: Stroke is a seriously disabling disease that can affect both the patients and their caregivers in different ways but in equal proportion. This study aimed to explore the experiences of stroke survivors and along with their caregivers after one year of stroke in India. Methods: Twenty stroke survivors and their caregivers were selected for our qualitative, study. Participants who attended two rehabilitation centers were selected using a random sampling method. A previously standardized questionnaire was used to collect information during the interview process. Results: Post-stroke occupational demands were less met and poor awareness of stroke led to various systems of medicines (Indigenous medicine) being tried even after the neuroplasticity had weaned out. Conclusions: The study highlights the need for stroke education for setting up post-stroke recovery expectations from the patient as well as the caregivers. The physiotherapy sessions should commence at the earliest for better results and there should be an emphasis on return to occupation or occupational modification. Keywords: Stroke, stroke survivors, caregivers, physiotherapy.

Stroke survivor, caregiver and therapist experiences of home-based stroke rehabilitation: a thematic synthesis of qualitative studies

Background Following the initial period of hospitalisation, stroke rehabilitation is increasingly occurring within the home. As such, the home setting becomes a critical environment in the context of rehabilitation service provision. Objectives This study aimed to explore what factors influence the experiences of stroke survivors, caregivers and therapists participating in home-based rehabilitation. Methods A systematic approach to thematic synthesis of qualitative studies began with search term development, followed by database search (CINAHL, Emcare, Medline, Scopus) from inception to 1 November 2022 using keywords and synonyms of ‘stroke survivor’, ‘therapist’, ‘caregiver’, ‘home rehabilitation’ and ‘experience’. Included studies were appraised using the Critical Appraisal Skills Programme (CASP) qualitative checklist. Data were analysed inductively for themes using a three-step thematic synthesis approach. Results A total of 26 studies were included in this thematic synthesis. Across the data, three overarching analytical themes were constructed, including (i) The significance of place, (ii) The impact of relationships, and (iii) The meaning of therapy. Conclusions The home setting offers benefits and challenges to delivery and participation in physical rehabilitation after stroke, shaped by various psychosocial and environmental factors that influence outcomes. Altered roles and relationships developed within the home setting influence participatory experience, whilst the setting can offer a familiar and relevant context to promote engagement in meaningful and purposeful therapy. Prior to hospital discharge, therapists who integrate personalised contexts into therapeutic environments can better prepare stroke survivors and caregivers for therapeutic participation within the home. Furthermore, future studies conducted before, during and after therapy focussing on stroke survivor, caregiver and therapist experiences of home-based rehabilitation can provide greater insight into the barriers and facilitators of home-based rehabilitation acceptance, adherence and implementation.

Abstract WP23: Stroke Survivors Experience During The Covid-19 Pandemic: A Phenomenological Investigation

Background and Purpose: Stroke occurs suddenly and can be a life-changing experience. Nearly 800,000 people in the United States each year suffer a stroke leading to major disability. Support of treatment of acute and follow-up care involves complex, evidence-based interventions to reduce death, stroke recurrence, post stroke disability and risk factors management. In 2019, American Heart Association released a policy guiding implementation of stroke systems of care. However, COVID-19 pandemic lockdowns changed public perceptions of when to seek stroke care. Little is known about care transformation due to pandemic. This study describes stroke survivors lived experience and challenges faced while seeking post-stroke care during pandemic across. Methods and Analysis: A qualitative phenomenological methodology was used to conduct the study. We enrolled 15 participants who had telemedicine follow-up visits and conducted in-depth interviews using study guide. Two independent reviewers used Giorgi descriptive method to search for essence of lived experience of surviving stroke and themes related to follow-up care using telemedicine. Results: Lived experience included variety of reactions due to an acute event such as life uncertainly, confusion and frustration, loneliness and worries. Unexpected challenges of care access and quality due to special COVID protocols and limited or no family support during hospital stay, emerged as additional themes. Themes related to follow-up care included post-stroke care coordination challenges, pros and cons of telemedicine encounters and practical aspects of using technology. Conclusions: Having a stroke during pandemic, created unexpected challenges that transformed post-stroke care. Individual approach was most important in dealing with challenges. Positive changes occurred while using telemedicine except in cases where full medical exam was needed. Patients recommended using hybrid approach for post-pandemic visits (in-person and telemedicine). Knowledge gained from this study can be used in a wider context of limitations imposed by other civilization-related epidemics.

Experiences of Male Stroke Survivors with Higher Brain Dysfunction after Discharge from a Rehabilitation Hospital: A Qualitative Study 6 Months after Hospital Discharge

Background: Stroke survivors face various problems after discharge from rehabilitation hospitals. This study aimed to clarify the post-discharge experiences of male stroke survivors with attention deficits, a form of higher brain dysfunction.

Sustaining telecare consultations in nurse-led clinics: Perceptions of stroke patients and advanced practice nurses: A qualitative study.

The ongoing pandemic has accentuated the use of telecare services; however, only limited progress has been made in understanding the barriers and facilitators to using these services. In order to move towards sustaining such essential services, the present study aimed to ascertain the experiences of stroke survivors and healthcare providers regarding the utilization of a post-stroke telecare service in Hong Kong. Interpretive description was employed for this study. Semi-structured discussions and interviews were undertaken with nine stroke survivors and four stroke nurses who delivered the telecare services. The principles of thematic analysis were inductively followed to analyse the data. The Standards for Reporting Qualitative Research checklist was used to guide the reporting of the data. Three themes emerged: (a) pre-existing post-discharge service pathways; (b) push factors/facilitators for telecare usage; and (c) barriers to telecare usage. Overall, the telecare service was considered a significant alternative and one that complements conventional face-to-face follow-ups. Stroke survivors were motivated to use the service because it was convenient and flexible. However, significant barriers exist, including technical issues and a lack of guidelines and training opportunities for healthcare providers. Although telecare is still evolving, several factors drive stroke survivors to use the service. Attention needs to be paid to the emerging barriers to improve long-term usage of the service. Clear guidelines are needed to underpin the development and implementation of telecare services.