Abstract
Background: Stroke survivors often face multifaceted challenges encompassing physical, psychological and social aspects of health during their recovery journey.
Aim: To explore the impact of stroke support groups on stroke patients and their caregivers in Kenya.
Setting: The study was conducted in eight Kenyan county referral facilities.
Methods: The study applied a qualitative interpretive paradigm and collected data from semi-structured face-to-face interviews with eight stroke survivors and their caregivers. Thematic content analysis was employed to extract and analyse data.
Results: The analysis of data revealed four key themes: (1) mental functioning, (2) environmental impact, (3) personal impact and (4) social participation. These themes were organised and related to the World Health Organization’s (WHO’s) International Classification of Functioning, Disability, and Health (ICF).
Conclusion: Peer stroke support groups significantly enhanced the ICF component of mental functioning, environmental and personal, through emotional support, social connection, coping, learning, mobility, communication and domestic life of stroke survivors and caregivers. Participation promoted affirmation and acceptance, and reduced loneliness, which led to increased involvement in a range of activities. Moreover, stroke support groups played a vital role in empowerment, education and advocating for systemic change.
Contribution: This study provides new information that improves understanding of the positive impact of stroke support groups in Kenya. It highlights the importance of integrating peer support into post-stroke rehabilitation programmes.
Keywords: stroke; support; group; peer mental; activities; participation.
Background
Stroke is a major global health concern and a leading cause of long-term disability and mortality (Chen et al. 2020; Cherry et al. 2017). It ranks as the third most common cause of disability-adjusted life years (DALYs) globally (Fernando & Pamela 2021). While the incidence of stroke has significantly decreased in developed countries because of advancements in early stroke care, it continues to be a major challenge in developing countries, particularly in sub-Saharan Africa (Akinyemi et al. 2021; Bakas, McCarthy & Miller 2017). The primary barrier is the lack of adequate medical facilities, the absence of standardised stroke care protocols and the need for multiple medical evaluations before the patient is transported to a specialised stroke hospital (Baatiema et al. 2017; Cano-Nigenda et al. 2021).
In low- and middle-income countries, stroke accounts for nearly 70% of all deaths, with 87% of stroke-related disabilities reported each year (Akinyemi et al. 2021). In Africa, data from the last decade show an annual stroke incidence rate of up to 316 per 100 000 people, a prevalence of up to 1460 per 100 000 and a 3-year mortality rate surpassing 80%. Additionally, many Africans experience a stroke between the fourth and sixth decades of life, which has serious consequences for the individual, their family and society (Owolabi et al. 2015).
The epidemiology of stroke in East Africa (Kenya, Uganda and Tanzania) has not been sufficiently documented. However, a prospective study by Matuja, Munseri and Khanbhai (2020) reported a high burden of stroke among young adults in Zanzibar, along with a high 30-day fatality rate. Matuja et al. (2020) reported in a comparable study that stroke accounted for 11.3% of all medical admissions, with an alarming 80% 1-year mortality rate in Tanzania. In Kenya, Kaduka et al. (2018) found a high stroke mortality rate and markedly poor survival rates within the first-year post-stroke. Olum et al. (2020) and Diaz et al. (2018) report a 30-day stroke mortality rate of 38.1% in southwestern Uganda, with stroke accounting for the highest number of admissions to a Ugandan neurology ward.
Following a stroke, both survivors and their caregivers face a range of challenges, particularly dealing with the impact on cognitive functions, including memory, attention and executive functions (Poomalai et al. 2023). This impact manifests as difficulties in processing information, problem-solving and decision-making, adding complexity to daily tasks and making them challenging to accomplish (Baatiema et al. 2020; Dehkharghani 2021; Havenon et al. 2021; Kalavina et al. 2019).
Stroke survivors similarly struggle with emotional changes, exerting a significant influence on their social interactions (Dehkharghani 2021). Also, caregivers experience heightened burdens because of disconnection from their social networks and shifts in their roles and relationships (Kalavina et al. 2019). As a result, depression may develop among stroke survivors and their caregivers (Kessler et al. 2014).
Activity and participation areas are severely affected after sustaining a stroke (O’Neil 2023). This influences a person’s ability to engage in social and recreational activities leading to reduced participation in community life (Hartford et al. 2019). It also disrupts their ability to work or pursue educational opportunities, greatly affecting stroke survivors’ social roles and well-being (Haley et al. 2019). Additionally, inadequate movement infrastructure hinders patients’ mobility, creating a significant obstacle to their participation (Muller et al. 2017; World Health Organization [WHO] 2001). Likewise, stroke patients frequently face problems in both verbal and non-verbal communication, lessening their participation in social interactions and activities, particularly because of speech difficulties.
High-quality healthcare is crucial in stroke rehabilitation. Although significant progress has been made in developing high-quality health services, substantial variations in healthcare delivery have persisted over the past two decades. This issue is particularly prevalent in low- and middle-income countries (LMICs), where inadequate care frequently results in poor patient outcomes. For instance, provision of quality and evidence-based stroke care is significantly inadequate and inferior in LMICs compared to high-income countries (HICs) (Baatiema et al. 2020).
Supporting post-stroke survivors’ mental well-being and participation is imperative (Elloker & Rhoda 2018). Regular counselling addresses emotional challenges like depression, while cognitive rehabilitation programmes target deficits in memory and executive functions, enhancing mental functioning (Poomalai et al. 2023). Educational initiatives for survivors and caregivers raise awareness about post-stroke mental health challenges. Social integration programmes, including group activities, combat isolation (Wan et al. 2021). Peer mentoring programmes, with advanced-stage patients supporting early-stage survivors, promote hope, offer emotional support and share experiences (Ling et al. 2023). Social support plays a crucial role in coping with post-stroke challenges, leading to improved adaptation and increased self-esteem (Bravo et al. 2015).
Resource scarcity in LMICs poses significant challenges to healthcare systems, particularly in managing chronic conditions such as stroke. Many LMICs face inadequate healthcare facilities, a shortage of trained healthcare professionals and limited access to essential medications and rehabilitation services (Waweru & Gatimu 2021). The economic burden is also substantial, with many individuals relying on out-of-pocket expenditures for healthcare because of limited or non-existent health insurance coverage. These constraints severely hamper the delivery of comprehensive stroke care and rehabilitation, making it difficult for stroke survivors to access the necessary support for recovery.
Stroke support groups can be highly impactful. They provide vital psychosocial support, reducing feelings of isolation and improving emotional well-being by offering a platform for survivors to share experiences and receive peer encouragement. Additionally, these groups enhance health literacy by educating survivors and caregivers about stroke prevention, management and the importance of adhering to treatment protocols. They also mobilise resources, advocate for better healthcare policies and facilitate group rehabilitation activities, thereby promoting better recovery outcomes and social reintegration. By addressing the multifaceted needs of stroke survivors, support groups significantly contribute to improved health outcomes and quality of life in resource-scarce settings.
Several studies from around the world highlight the positive impact of peer support on stroke survivors’ psychological well-being, coping mechanisms and quality of life. Kessler, Egan and Kubina (2014) in Ottawa found that peer support has the potential to improve services for stroke survivors and facilitate their reintegration into the community. Similarly, Christensen, Golden and Gesell (2019) discovered that peer support groups, although scarce, are a crucial resource for rural stroke survivors and caregivers. These resources provided information and support that aided recovery and fostered well-being and self-sufficiency in rural Appalachian Kentucky. However, there is a scarcity of literature on peer support for stroke survivors in Africa. Notably, South Africa stands out with the Stroke Survivors Foundation, which provides a vital platform for survivors to share experiences and find support (Murray & Scola 2010). The foundation extends its support to families and caregivers, serving as an information centre and offering respite from home difficulties. It plays a crucial role in addressing the needs of both stroke survivors and their caregivers.
Cultural factors influence the perception and acceptance of peer support. In African cultures, the extended family and community play significant roles in supporting individuals with health challenges (Bunning, Gona & Hartley 2017; Jazieh, Volker & Taher 2018). Some communities rely on traditional healing practices and religious beliefs alongside conventional medicine (Asuzu et al. 2019). Integrating these practices into stroke support frameworks may be important for cultural relevance and acceptability.
Lack of peer support in stroke rehabilitation may amplify dependency, promoting social isolation that detrimentally affects social integration and emotional well-being. These factors can contribute to suboptimal recovery and diminished productivity. Considering the sparse but positive African literature, it appears that stroke peer support could play a pivotal role in Kenya, addressing not only physical needs but also providing crucial emotional support, coping strategies, social connections and empowerment. Such groups could contribute significantly to the overall well-being and quality of life of stroke survivors.
Dr. K.M. in 2010 experienced a profound life change at 58 years when a severe stroke left him with speech difficulties, partial right-side paralysis and vulnerability. Transitioning from a doctor to a patient, he sought connection and understanding about life post-stroke. During intensive rehabilitation, he connected with F.W., another stroke survivor, forming a bond based on shared experiences. Though the two were not the first stroke survivors, they were motivated by their struggles; K.M. proposed and established a stroke peer support group with the help of a local hospital and rehabilitation centre. This support group, initially small, expanded its focus beyond medical guidance to include emotional and psychological aspects of recovery. The researcher joined the group as a trainer on stroke rehabilitation through which she learned about the stroke support group. Regular meetings facilitated the sharing of coping strategies, personal stories and emotional support. As the group grew, they engaged in stroke awareness events, raising funds and educating the community. Dr. K.M.’s journey from a neurologist to a stroke survivor and support group founder exemplifies resilience and adaptability, challenging societal perceptions of life after a stroke in Kenya. His support group became a testament to the positive impact individuals can make in the face of adversity, demonstrating the transformative power of the human spirit.
Since this experience, stroke support groups in Kenya have been operating for a number of years; however, their benefits as perceived by stroke survivors and caregivers have not been established. This research explores end-users’ perceptions of the impact of stroke support groups and relates this influence on the WHO’s International Classification of Functioning, Disability, and Health (ICF; WHO 2001).
Research methods and design
The Consolidated Criteria for Reporting Qualitative Research (COREQ) statement guided the methodology and reporting of this study (Tong et al. 2007).
Study design
A qualitative explorative study was conducted, using an interpretive paradigm (Pervin & Mokhtar 2022). The study approach was essential because the study explored phenomena, which included emotions, motivations and social interactions, which are difficult to quantify. The study design generated a comprehensive and insightful understanding of peer support, from natural settings, while considering the broader epistemological and philosophical implications(Pervin & Mokhtar 2022).
Study site selection
The study was conducted in eight county referral hospitals. Kenya was originally divided into 8 provinces (Figure 1), which were later divided into 47 counties. However, not all of these counties have a county referral health facility. Therefore, the researcher chose the former provincial hospitals, now referred to as county referral hospitals, as they provided a clear representation of the entire country.
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FIGURE 1: Map of the eight provinces in Kenya showing the location of county hospitals. |
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The Kenyan healthcare system is structured into five levels, namely, Level 6 (National hospital), Level 5 (county hospital), Level 4 (Sub-county hospital) and Levels 3 and 2 (community healthcare facilities; United Nations, 2016). Community healthcare facilities primarily provide promotive and preventive services, while Level 4 facilities deliver primary healthcare services. Levels 5 and 6 serve as secondary and tertiary facilities, offering specialised healthcare services.
Study participants and recruitment
Purposive sampling was initially employed. Participants included stroke patients who had undergone physiotherapy management for a period exceeding 6 months, were able to communicate effectively in either English or Swahili and were available during the data collection period. Patients with stroke who had other medical conditions that could potentially impact the rehabilitation process were excluded. The researcher focussed on patients undergoing physiotherapy, as this was the primary rehabilitative service offered in most county facilities. Additional convenient sampling was used to accommodate the unpredictable attendance at physiotherapy appointments by patients.
Most of the facilities had a maximum of three stroke patients eligible for inclusion at the time of data collection. However, because of the diversity in culture, health-seeking behaviours and availability of resources in different county facilities, the researcher chose to include one participant from each county hospital. For facilities with three eligible participants, the researcher randomly selected one participant. Caregivers included those who had been actively engaged in the care of a stroke patient, were able to communicate in either English or Swahili and were available during data collection. The study sampled eight stroke survivors and their caregivers.
Physiotherapist in charge of the selected county facilities approached the participants during clinic visits, informed them about the study, explained its aim and recorded participants’ interest to participate. Informed written consent was obtained from all participants before commencing interviews. Data collection was guided by interview guides (Appendix 1 and Appendix 2) developed from both the existing literature on stroke rehabilitation and the specific aim of the study literature on stroke care process and best practice guided the development of the interview guide (Hebert et al. 2015). The interview schedules were piloted through four participants who were not part of the main study. The pilot study indicated that the interview guide questions were clear, relevant and easily understandable to participants, effectively aligning with the research objectives and capturing necessary information. Probing techniques proved successful in extracting detailed responses. Additionally, the questions were culturally sensitive and suitable for stroke survivors.
Appointments for interviews were set on clinic days to minimise travel costs. Separate interviews with patients and caregivers stimulated dynamic conversations, promoting in-depth exploration of the topic. All the participants sampled were available for the interview on the scheduled days. Interviews took place at the physiotherapy departments in respective hospitals. Interviews were conducted post-treatment sessions in the Head of Departments office for a disturbance-free, comfortable environment, and they were audio-recorded. The interviews lasted for 50 min – 60 min each. Saturation was achieved with the 15th participant; however, the 16th participant was taken in, as prior arrangement had been made and was included in the data analysis. Data collection took place from 04 May 2015 to 15 November 2015.
The primary researcher, N.W.K., led all interviews, with T.M. assisting in capturing field notes during patient interviews and S.K. taking field notes during caregiver interviews.
Interviews were once-off, with no subsequent follow-up sessions.
N.W.K. was a female lecturer holding a Master’s degree in physiotherapy, and this study formed part of her larger doctoral research project. T.M. and S.K. were female researchers with a Master’s degree in epidemiology and were participating in various research projects.
Data processing
Analysis involved an iterative process with repeated cycles of data transcription and analysis (Morgan & Nica 2020). Data were deductively analysed using the content approach (Kiger & Varpio 2020). The researcher used data from various participants in a step-by-step process to derive a logical progression. Audiotaped interviews were transcribed verbatim by T.M. The transcripts were cross-checked by S.K. with the audio recordings for accuracy. Swahili transcripts were translated into English by J.G. once the recordings were confirmed. Translations were done both from English to Swahili and vice versa to ensure validity. One member of the research team (N.W.K.) conducted the initial coding of the transcripts, repeatedly reviewing them to identify recurring themes and patterns emerging from the data.
Initial coding involved extensive discussions among the research team to exchange perspectives and deepen understanding of participants’ perspectives. Variances were addressed through dialogue until an unanimity was reached. An iterative approach followed, involving naming, renaming and refining of codes, alongside finding recurrent themes, concepts and patterns, which were subsequently organised into categories. A codebook was developed and applied to remaining transcripts using computer-assisted qualitative data analysis (CAQDAS) software, ATLAS.ti version 8.1.0. To ensure confidentiality, transcripts were stored in locked cabinets, while electronic data were kept on a computer protected by antivirus software and strong password controls to restrict access to authorised personnel only. Data backups were maintained in iCloud to prevent data loss. For anonymisation, the study used unique codes to replace real names. Both direct and indirect identifiers were removed from the transcripts, with identifiable information replaced by generic descriptors. A secondary party reviewed the transcripts to ensure thorough anonymisation.
Methods of trustworthiness
Member checking was ensured by returning transcripts to select participants (Paulus et al. 2017). Participants provided feedback on the returned transcripts, indicating that the interpretations were correct and that they agreed with the researchers’ themes. They confirmed that the completeness of the transcription and interpretation was satisfactory. This feedback was significant, as it affirmed the accuracy of the transcripts and validated the interpretations, ensuring the findings’ reliability and credibility. The participants’ confirmation enhanced the study’s robustness by corroborating that the data accurately reflect their experiences and perspectives.
Rigour was upheld through the clear description of research design, systematic data collection and analysis. Detailed, context-rich descriptions of the research setting were provided to participants to enhance transferability.
Collaborative discussions with supervisors were conducted to ensure analytical consistency and dependability. Furthermore, the researcher disclosed her professional background and acknowledged potential biases. Direct quotes from participants were included to effectively convey their voices, thereby strengthening the study’s authenticity.
Ethical considerations
Ethical clearance to conduct this study was obtained from the University of the Western Cape Biomedical Research Ethics Committee (No. (BMREC) 14/7/7) and the Institutional Research and Ethics Committee (No. FAN: IREC1244). Permission to conduct the study was also obtained from each hospital’s chief executive officer through the research office. Informed written consent was obtained from all participants before commencing interviews.
Results
Characteristics of the participants
All 16 participants were available for data collection and were interviewed. Social demographic data were captured using the social demographic questionnaire. Eight dyads participated, comprising patients with a mean age of 58.1 years and caregivers and/or spouses with a mean age of 44.5 years, while the standard deviation is 10.22 years and 13.21 years, respectively. The majority of caregivers were female and primarily spouses (Table 1 and Table 2).
| TABLE 1: Sociodemographic and clinical characteristics of the sample patients’ demographics. |
| TABLE 2: Sociodemographic and clinical characteristics of the sample caregivers/spouses’ demographics. |
Four primary themes emerged (Figure 2). Themes, subthemes and categories are substantiated with quotes extracted from the interviews.
Theme 1: Mental functioning
Mental functioning emerged as a main theme with one subtheme (emotional support) and two categories: hope and motivation and comfort and affirmation.
Subtheme 1.1: Emotional support
Category 1: Hope and inspiration: Stroke survivors struggled with fear, anxiety, depression and frustration because of the sudden and life-altering nature of their condition and the uncertainty of potential disability and loss of independence. Support groups provided a secure and compassionate setting, enabling individuals to openly express their emotions. Fellow members of the support group empathised with the unique emotional struggles. This understanding helped individuals feel heard and understood:
‘I became depressed, I didn’t know what would happen to me, but our stroke group came in handy, they kept encouraging me and giving me hope.’ (P06, 58 years old, Female)
Support groups acknowledged and validated the wide range of emotions that stroke survivors and caregivers experienced. Knowing that these emotions were normal was comforting for the participants:
‘The group, this is home for me. They made me feel that what I am passing through was a part of stroke recovery journey and it was okay to feel depressed.’ (P07, 35 years old, Male)
Members of support groups often shared their personal experiences, both the challenges they had faced and the successes they had achieved in their stroke recovery. This sharing of experiences offered hope and inspiration to others. Witnessing success stories and hearing about others’ achievements instilled hope and determination:
‘Seeing and hearing from other about their journey with stroke gives me hope.’ (P02, 60 years old, Male)
Stroke recovery is a lengthy journey; support groups offered continuing assistance and a sense of community that adapted to changing needs over time. This continuity of care and support benefited both survivors and their families as they navigated various phases of recovery:
‘You know stroke management is a long journey, so support group is there all through this journey.’ (P06, 58 years old, Female)
Category 2: Comfort and validation: Within the support groups, participants reported interacting with other stroke survivors who had made progress in their recovery, which was motivating and inspiring. Sharing feelings, concerns and experiences with individuals who understood their struggles provided comfort and validation, leading to improved mental health:
‘Being in this group makes me feel at home, you listen to others who have suffered a stroke and I feel there is hope. Nowadays am no longer stressed.’ (P03, 61 years old, Male)
Support groups offered a profound sense of belonging and validation. Survivors often found that they were more readily accepted and understood within the groups of individuals who had faced similar challenges. This sense of belonging enhanced self-esteem and confidence:
‘After a stroke, I realised my identity changed to “that lady who has a stroke” a felt like a I was considered abnormal in the world of normal people, but in this group I felt accepted.’ (P05, 52 years old, Female)
Theme 2: Environmental factors
The second theme identified in the study was environmental factors, which encompassed two distinct subthemes: coping strategies and social connection and inclusion.
Subtheme 2.1: Social connection and inclusion
Support groups provided vital social interaction for stroke survivors, promoting connections and friendships that alleviated feelings of loneliness. These outlets allowed survivors to build networks with others who understood their struggles, reducing isolation and enhancing well-being for both survivors and caregivers. Within these groups, members motivated and supported one another, sharing experiences of progress and triumph over obstacles, which inspired determination and resilience:
‘Here I have friends, am no longer lonely, we even visit one another.’ (P08, 72 years old, Male)
Peer groups united individuals who shared similar experiences, fostering an immediate bond and mutual understanding among members:
‘When I hear others that were and are now walking, am encouraged to continue with therapy.’ (P07, 35 years old, Male)
This social interaction significantly enhanced the quality of life for stroke survivors. Having a supportive network of friends who empathised with their challenges and provided encouragement bolstered patients’ well-being:
‘Today I’m much better, my life was pathetic, I used to sleep all day long. With the support I was able to accept and believe in myself, am running a family business assisted by my daughter.’ (P01, 63 years old, Male)
Supportive networks facilitated social interaction, aiding survivors in adapting to evolving needs and maintaining fulfilling lives. Many survivors faced challenges with confidence in social settings, but support groups played a key role in rebuilding this confidence by offering a supportive environment for social interactions:
‘I joined almost 3 years ago when I was on a wheelchair, today am walking. The group has been a pillar through my recovery journey. I always get advice on where to go for specific services. I feel at home. I also advice new commers as well.’ (P07, 35 years old, Male)
Theme 3: Personal factors
The third theme identified in the study was personal factors, which included one subtheme: coping strategy.
Subtheme 3.1: Coping strategies
Coping with the consequences of a stroke such as the physical, cognitive, emotional and lifestyle adjustments was overwhelming for most of the participants. Support groups often provided a platform for sharing effective coping strategies for dealing with emotional challenges and reduced stress levels by providing an outlet for expressing concerns. They provided a platform to learn from others’ experiences and building resilience:
‘From this group I was able to learn how to do certain chores at home, am better now. I can cook and wash dishes by myself.’ (P06, 58 years old, Female)
Likewise, caregivers disclosed that support groups helped them cope with their own feelings and responsibilities:
‘As caregivers, we also learn from one another. It is not easy to take care of a stroke patient. At times I get depressed, coz my life came to a stop after my husband got a stroke.’ (CG03, 28 years old, Female)
Theme 4: Social participation
Social participation was the fourth key theme identified in the study, which was categorised into four subthemes: learning and information exchange, mobility, domestic life and communication.
Subtheme 4.1: Learning and information exchange
Support groups facilitated peer-to-peer learning, thus serving as invaluable hubs of information and education. Participants had the opportunity to exchange knowledge about stroke recovery, rehabilitation techniques and strategies for addressing daily life challenges. This knowledge instilled hope and offered practical insights into the intricacies of the recovery process:
‘In this group, we learn from one another on what we can do at home when we are not going for therapy. Stroke has many challenges, so we help one another on how to go about those struggles.’ (CG06, 63 years old, Female)
Stroke survivors exchanged practical information tips, such as setting achievable short-term and long-term goals, having a daily schedule for exercises and activities and sticking to it to maximise progress as well as being consistent in rehabilitation:
‘I got advice on how to go about rehabilitation at home, I have a time table now on when and what exercises to do. I was also encouraged to start doing a few things for myself I can clean my clothes.’ (P08, 72 years old, Male)
Support groups extensively educated members on stroke prevention, recovery process and management to prevent recurrence. Patients and caregivers received training on nutrition, medication adherence and lifestyle changes, empowering them to make informed decisions. These groups offered a platform for caregivers to share challenges, seek advice and gain skills for enhanced care:
‘Our chairman gets specialist to come and teach us on stroke, we are all very careful to follow doctors instruction. We were told one can get another stroke if we are not careful.’ (P06, 58 years old, Female)
Caregivers learned about stroke and understood the gradual nature of recovery, necessitating patience and acceptance of setbacks. They adapted living spaces for safety, installing grab bars and removing hazards. Support groups emphasised self-care for caregivers, offering respite care to prevent burnout through temporary relief provided by family and friends:
‘We got to know that recovery might take a while, we made adjustment to the doors at home to allow wheelchair to pass through.’ (CG04, 40 years old, Female)
Subtheme 4.2: Communication
Engaging in conversations with empathetic peers was therapeutic, which helped in improving communication skills for survivors who experienced aphasia or other speech and language difficulties after a stroke:
‘I struggled a lot when talking, but my peers were patient with me and kept on encouraging me to talk, but before them I would keep quiet to avoid making mistakes.’ (P01, 63 years old, Male)
Social interaction within a supportive environment helped stroke survivors with communication difficulties improve their skills, boosting confidence and fostering better engagement with others. Conversing and participating in activities with peers provided valuable cognitive and physical stimulation, particularly aiding those seeking to regain or maintain cognitive abilities:
‘My sisters had challenges talking, but they could fumble with other stroke patient, and funny enough, they seemed to understand each other.’ (P05, 52 years old, Female)
Subtheme 4.3: Mobility
Members provided practical guidance on how to navigate the healthcare system, improve mobility and access resources for obtaining assistive technology (AT) and adaptive equipment to make daily tasks more manageable. This guidance eased the AT acquisition process:
‘I was guided on where to get the shoulder brace, walkon Ankle Foot Orthosis and tripod stand. Some of these gadgets are very difficult to know where to get them.’ (P07, 35 years old, Male)
Additionally, seeing fellow group members making progress in their mobility was inspiring and encouraged stroke survivors set and achieve their own mobility goals:
‘From the stories I realised someone can recover from a stroke. I decided to put more effort and I got committed to therapy. Here I am walking.’ (P02, 60 years old, Male)
Subtheme 4.4: Domestic life
Knowledge sharing empowered stroke survivors to better manage their condition and get involved in activities of daily living such as re-training on house chores:
‘We normally learn from one another on how to manage different challenges. For me I was able to learn to cut things such as vegetable with my right hand with little help from the sick left hand.’ (P05, 52 years old, Female)
Sharing knowledge facilitated individuals who had experienced strokes in connecting with handymen who could assist them in making necessary adjustments to their homes, particularly in their kitchens, to improve functionality while coping with the challenges posed by stroke:
‘I was actually referred to an artisan who helped me change my kitchen to suit my current condition. Now I can prepare meals with minimal help.’ (P04, 58 years old, Female)
Discussion
This study explored the impact of stroke support groups, highlighting their crucial role in enhancing mental functioning, influencing both environmental and personal factors and promoting social participation among stroke survivors and their caregivers.
Our findings affirm that these peer support groups provide vital emotional support, alleviating feelings of isolation, depression and anxiety commonly experienced by survivors and their caregivers.
These groups provided a holistic assistance, promoting resilience and well-being in the stroke community by providing a safe environment for expressing emotions without judgement, fostering validation and empathy among members. They provided access to tailored counselling and mentorship while facilitating meaningful connections and reducing feelings of isolation. Social support groups shared coping strategies, including problem-solving and adapting to lifestyle changes. Their success stories inspired hope, with members serving as role models and celebrating milestones. In low- to middle-income countries like Kenya, where healthcare resources are scarce and professional support is limited, these groups could offer a cost-effective alternative to formal mental health services for stroke survivors and caregivers. Operating within culturally acceptable frameworks, they align with existing community support systems, making them accessible regardless of socioeconomic status. Our findings are in agreement with a previous report from South Africa (Murray & Scola, 2010).
Peer support-related benefits have been shown to instil hope, validation and alleviating feelings of isolation in people with stroke (Wan et al. 2021). Stroke survivors and caregivers with peer support are more likely to overcome the challenges linked to stroke (Pindus et al. 2018; Sadler et al. 2017). Support groups facilitate the sharing of practical coping strategies tailored to local contexts, empowering members to navigate challenges such as physical disability and social stigma and coping more effectively (Wan et al. 2022).
Our study found that support groups provided guidance on healthcare navigation and assistive technology that eased mobility challenges while knowledge sharing empowered managing daily tasks like house chores. By providing practical tips, education and emotional support, the stroke support groups enabled stroke survivors and caregivers to better navigate the challenges of stroke recovery together. This assistance helped them re-engage in social activities by boosting confidence, improving communication skills and enhancing mobility.
The success of support groups in our study emphasises the importance of integrating these groups into the formal healthcare system. The Kenyan government and healthcare providers could establish and fund support groups as a vital component of stroke rehabilitation programmes.
Enhanced mobility and independence for stroke survivors can also yield economic benefits. By reducing the need for constant caregiving, families can allocate their resources more efficiently, and survivors may even return to work, contributing to household income.
Our findings highlight the need for educational outreach to raise awareness about stroke recovery and the benefits of support groups. Public health campaigns can inform the population about the availability and advantages of participating in these groups. Additionally, providing caregivers with the necessary training and resources to support stroke survivors can improve the quality of care and reduce caregiver burnout.
As stroke survivors gain more independence in managing daily tasks, such as house chores, and as caregivers receive guidance on self-care and safety adaptations, they become better equipped to participate in social interactions and community engagements (Christensen et al. 2019). Ultimately, the holistic support offered by support groups enhanced the social participation of both stroke survivors and their caregivers, promoting a sense of belonging and connection within their communities.
Activity and participation play a pivotal role for people with stroke, and peer support groups present a suitable avenue for stroke survivors to actively participate in everyday activities highlighting the importance of enhancing functional capabilities and autonomy. Support groups provide essential social interaction, empathy and encouragement for both survivors and caregivers, significantly improving their well-being and nurturing resilience (Christensen et al. 2019; Richard et al. 2022; Haley et al. 2019). Therefore, healthcare professionals and policymakers in Kenya should actively support these groups as part of comprehensive stroke care programmes in order to facilitate social participation and promote inclusive communities.
Recommendations for future research
Our study employed a limited sample size primarily because of the scheduling constraints of the participants who were available for physiotherapy appointments. Additionally, the patients’ appointment times were spread out over different days, further restricting the number of participants we could include at any given time.
Despite this limitation, a study approach was essential because the study explored complex phenomena, including emotions, motivations and social interactions, which are difficult to quantify. To strengthen the validity and generalisability of these findings, it is recommended that future research include a more extensive sample and diverse participant pool, spanning a wider age range, to provide a more comprehensive understanding of how peer support impacts individuals across various demographics. The inclusion of stroke survivors with varying degrees of severity is crucial for capturing the effectiveness of peer support at different stages of recovery.
Limitations
The study was confined to patients attending rehabilitation in tertiary hospitals. It is possible that other patients in lower-level hospitals have different perceptions that need further exploration.
The principal investigator had limited understanding of the cultures of various communities. A local physiotherapist assisted where help was needed to overcome the barrier. Recognising the researcher’s constraints in comprehending various community cultures, a local rehabilitation facility played a vital role in providing assistance, thereby addressing potential barriers.
Conclusion
Peer stroke support groups significantly enhanced the ICF components of mental functioning, environmental and personal factors. This enhancement was achieved through emotional support, social connection, coping strategies, learning opportunities, mobility assistance, communication improvements and support for domestic life. Participation in these groups promoted affirmation and acceptance among stroke survivors and caregivers, reducing feelings of loneliness and increasing involvement in a range of activities. Moreover, stroke support groups played a vital role in empowerment, education and advocacy for systemic change, further improving the quality of life for participants.
Acknowledgements
The authors would like to thank the staff and patients at the county referral hospitals for their invaluable contributions. T.M., S.K., and J.G. is acknowledged for their contribution to data collection and administrative support.
Competing interests
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
Authors’ contributions
N.W.K.: conceptualisation, methodology, writing original draft, reviewing and editing. A.R.: conceptualisation, methodology, supervision. Q.A.L.: writing original draft, reviewing and editing. E.N.: writing (reviewing and editing).
Funding information
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Data availability
The data underlying this article will be shared on reasonable request to the corresponding author, N.W.K.
Disclaimer
The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.
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Appendix 1
Caregiver interview guide
- □ Name of Caregiver:
- □ Relationship to the Patient:
- □ Age:
- □ Occupation:
- □ Duration of Caregiving (since the stroke):
Q1. Initial Reaction and Adaptation
- □ Can you describe your initial reaction when you found out about the stroke.
- □ How did you feel during the early days of the patient’s recovery?
- □ What were the biggest challenges you faced initially?
- □ How did you adapt to your new role as a caregiver?
Q2. Daily Caregiving Responsibilities
- □ What are your primary responsibilities as a caregiver?
- □ Can you describe a typical day in your caregiving routine.
- □ What kinds of tasks or activities are most challenging for you?
Q3. Support and Resources
- □ What kind of support system do you have (family, friends, support groups)?
- □ Have you received any formal training or guidance on how to care for a stroke patient?
- □ What resources (e.g. books, online materials, healthcare professionals) have been most helpful?
Q4. Emotional and Mental Health
- □ How has caregiving impacted your emotional and mental well-being?
- □ Do you have any strategies for coping with stress or burnout?
- □ Have you experienced any changes in your personal relationships due to your caregiving responsibilities?
Q5. Patient’s Progress and Rehabilitation
- □ Can you describe the patient’s progress since the stroke?
- □ What improvements have you noticed over time?
- □ Are there any setbacks or challenges in the patient’s recovery that concern you?
- □ How involved are you in the patient’s rehabilitation process (e.g. physical therapy, occupational therapy)?
Q6. Financial and Logistical Aspects
- □ Has the stroke impacted your or the patient’s financial situation?
- □ How do you manage medical expenses and caregiving costs?
- □ Have you had to make any changes to your living environment or lifestyle to accommodate caregiving?
Appendix 2
Interview guide for stroke patients
Name:
Age:
Date of Stroke
Type of Stroke (if known):
Pre-stroke Occupation:
Q1. Initial Stroke Experience
- □ Tell me what happened when you had the stroke.
- □ What immediate treatments or interventions did you receive?
Q2. Hospital and Rehabilitation Experience
- □ How long were you in the hospital?
- □ Can you describe your rehabilitation process (physical therapy, occupational therapy).
Q3. Impact on Daily Life
- □ How has the stroke affected your daily life (ability to work, hobbies)?
Q4. Emotional and Mental Health
- □ Tell me how stroke affected your emotional and mental well-being.
- □ Tell me how you cope with any emotional or mental health challenges.
Q5. Support System
- □ What kind of support system do you have (family, friends, support groups)?
Q6. Healthcare and Professional Support
- □ Describe your relationship with your healthcare providers.
- □ What follow-up care have you received since the stroke?
- □ Have you had access to all the medical and rehabilitation services you need?
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