Keywords
Experiences of family caregivers, Stroke survivors, Burkina Faso
Background: Stroke survivors in sub-Saharan Africa frequently require continuous assistance from their relatives for daily activities and personal hygiene care. In Burkina Faso, the experiences of these caregivers are not documented.
Purpose: This protocol describes a study that aims to explore in-depth the experiences of the family caregivers of stroke survivors in this region in order to better understanding the real impacts of caregiving on their overall lives.
Methods: A convenience sample of twenty family caregivers recruited from both urban and semi-urban regions will be used to conduct a qualitative study. Participants will take part in individual semi-structured online interviews using an interview guide pre-designed by the authors. The interviews will be recorded and transcribed verbatim. The data will then undergo abductive thematic analysis guided by the International Classification of Functioning, Disability, and Health (ICF) framework.
Expected results: Four main potential themes could eventually emerge. 1) Health and well-being of family caregivers (e.g., physical, psychological, and social impacts, health management, conflicts, and priorities); 2) Balancing caregiving responsibilities and personal life (e.g., daily caregiving management and the impact of caregiving role on social participation); 3) Impact of environment on the caregiving role (e.g., social and physical environment factors); 4) Personal experience and perceptions of the caregiving role (e.g., self-assessment as a caregiver, expectations and needs).
Conclusions: To the best of our knowledge, this will be the first study of its kind conducted in this country. Therefore, it will make a substantial contribution to stroke research in sub-Saharan Africa, specifically in Burkina Faso.
Ethical approval: This study was approved by the Research Ethics Committee of the Burkina Faso Ministry of Health (No: 2023-07-183). It will be conducted following the prescribed guidelines respecting the confidentiality of participants.
Experiences of family caregivers, Stroke survivors, Burkina Faso
In developing countries, stroke is more prone to occur at an earlier age than in developed countries. And this could lead to major long-term consequences, particularly in sub-Saharan Africa.1,2 Recent statistics indicate that the incidence rate of stroke is highest in Africa, with an estimated 316 cases per 100,000 individuals per year, and a prevalence of up to 1,460 per 100,000.1,3 Moreover, stroke patients in Africa experience high mortality rates, with over 80% of them passing away within three years.1,3 Sub-Saharan Africa is significantly challenged in managing the consequences of stroke,1,4 despite the efforts of national governments, and the institutional support of the World Health Organization (WHO).1 Stroke consequences range from physical5–7 and psychological disorders2,8 to post-stroke environmental barriers,9 and stroke impact on caregivers in both developed and developing countries.10 Indeed, in this context where individuals after a stroke have suddenly become dependent due to multiple functional limitations, their families and/or relatives are required to take on new responsibilities for them, such as assistance with mobility, feeding and body hygiene care, thus creating the notion of caregiving.10 A relevant systematic review conducted by Mackenzie and Greenwood in 2012, which included nine qualitative and quantitative studies, highlighted the main positive effects of caregiving.11 These effects referred to the improvement in the health status of stroke survivors and strengthening connections with their caregivers, resulting in better social integration of stroke survivors within their communities.11 However, caregiving can be seen as a burden on them and can have a negative impact on their lives.12 For example, a recent scoping review of fifty-eight studies showed that stroke survivors caregivers experienced a decline in their quality of life and increased levels of psychological disorders (i.e., depression and anxiety), as well as a lack of resources they need to efficiently carry out their duties.13
In addition, post-stroke sequelae, such as cognitive impairments or communication difficulties encountered by stroke survivors, are likely to complicate the assistance provided by family caregivers.14 Caregivers could therefore be severely and permanently affected or unable to assume their family, social, and personal or professional responsibilities.15 In summary, despite the benefits of caregiving, caregivers could face several difficulties that deserve special attention to prevent physical and emotional exertion in performing their duties. Due to the lack of institutional or governmental support services, including residential facilities or long-stay institutions, in Burkina Faso, a developing country in sub-Saharan Africa, family members of stroke patients systematically assume responsibility for supporting stroke survivors from hospital admission to their return to the community, sometimes indefinitely. As far as we know, there is currently no available data on experiences of family caregivers of stroke survivors in this country. Therefore, this intended study aims to explore in-depth the determinants and extent of the experiences of family caregivers of stroke survivors.
This study will use a descriptive qualitative design that enables accurate data analysis of participants’ experiences and perceptions. To ensure transparency of the methodology, this study will follow the requirements of the Consolidated Criteria for Reporting Qualitative Research checklist (COREQ).16 Thus, we will provide demographic information about the members of the research team (e.g., profession, gender, experience, education, and responsibility in the study), as well as a description of the qualitative approach and conceptual framework used, the sampling and sample size. All these details will help to demonstrate the rigour with which the study will be carried out but will also add transparency to the results that will be provided.
Additionally, the International Classification of Functioning, Disability, and Health (ICF) framework17,18 will be used to guide the qualitative data analysis. ICF encompasses several health-related aspects about functioning, activity, participation, and personal and environmental factors. It applies to all individuals, whether they have a disability or not.18 ICF will facilitate the widespread documentation of the experiences of family caregivers of stroke survivors, each with their own unique experiences.
The study aims to recruit twenty family caregivers of stroke survivors in Burkina Faso through a convenience sample. Potential participants will be recruited from the rehabilitation unit registers of three hospitals: the “Centre Hospitalier Universitaire de Bogodogo”, the “Centre Hospitalier Universitaire Sourou Sanou”, and the “Centre Hospitalier Régional de Tenkodogo” in Burkina Faso. Once the stroke patients’ files have been identified, contact details (phone numbers, addresses, or email addresses) will be collected. Their caregivers will then be contacted via the patients to request their participation in the study after we have provided them with a brief overview of our research. Family caregivers interested in participating in the study will be contacted again to plan an initial appointment during which, they will receive a comprehensive information letter detailing the aspects of the study. All participants included in the study will be required to sign a consent form prior to participating in semi-structured interviews. To be eligible for this study, individuals should meet the following inclusion criteria: 1) providing continuous and non-remunerated assistance to a stroke survivor, including personal hygiene care, and feeding; 2) be a family member of the stroke survivor and be 18 years of age or older; 3) be able to communicate effectively in French and participate in an interview. Family caregivers will be excluded when a) they have a history of psychological disorders before their parent’s stroke, which could impact the interview procedure; b) they assist stroke survivors on a discontinuous or infrequent basis.
In July 2023, the research team submitted the protocol to the Research Ethics Committee of the Health Ministry of Burkina Faso and obtained ethical approval (N°: 2023-07-183) for conducting this study. Moreover, before starting data collection, the research team will request research authorization from the three hospitals mentioned above to access the data of stroke patients.
Sociodemographic characteristics
Sociodemographic data such as age, sex, level of education, occupation, time since stroke, and monthly income, will be collected using a survey.
Qualitative data
Online interviews will be conducted with the participants by one member of our research team (FO), who has expertise in qualitative research methods. The interview guide in Table 1 comprises six open-ended key questions that align with the ICF model domains. In order to explore more fully family caregivers’ experiences, between three and seven booster questions depending on these open-ended key questions will also be used during the semi-structured interviews. In addition, to improve relevance, suitability, and cohesiveness of the interview guide with the objective of the study, pre-tests will be conducted among members of the research team. The aim is to refine this support and test its effectiveness in an iterative process. These procedures illustrate the research team’s commitment to using an impartial, unbiased interview guide that corresponds closely with the study objective, thereby enhancing research reliability. Each semi-structured interview is expected to last between 30 and 45 minutes and will be scheduled at the participant’s convenience. Interview audio recordings will be transcribed verbatim to assist with thematic analysis.19 To preserve participants’ anonymity, pseudonyms will be used in the transcripts.
Sociodemographic data will be analyzed using descriptive statistics (frequency, percentage, mean and standard deviation - SD) with IBM SPSS Statistics 26 software. As for qualitative data, we will adhere to the Lincoln and Guba standards (as described in Table 2),20 ensuring the highest scientific value of the study. The verbatim transcripts will be uploaded to the Mixed Method Solution for Qualitative Analysis (QDA Miner software) to facilitate organization and coding. Two members of the research team (FO and GMK) will then verify the transcripts. Subsequently, an abductive thematic analysis21 will be conducted. By adopting this approach, the research team can generate new ideas through a dynamic interaction between theory and data. A predefined coding scheme will be developed based on the ICF categories. Next, the research team carefully will examine the transcription text to identify which meaning unit reflected one of the predetermined codes. The codes and assemblies will be frequently revised, and new relevant codes will be assigned to meaning units that could not be coded or categorized within the initial scheme codes. Finally, the new codes will be reviewed and represented as themes or sub-themes related to the ICF model or as an emerging category. Furthermore, the thematic analysis will be submitted to a specialist in analysing qualitative data, who will provide his expertise to enhance our analysis methodology and optimize the relevance of our research. Direct quotes to be provided in the article will be translated from French into English by a bilingual researcher.
Expected results: On the basis of the developed interview guide, up to four potential key themes were distinguished relating to the ICF domains (see Figure 1). These themes could be the focus of our future results:
(1) Health and well-being of family caregivers: This main theme and its sub-themes may explore the health challenges experienced by family caregivers in their role, encompassing physical, psychological, and social aspects. It could highlight how caregivers handle these challenges while caring for stroke patients and address the complex dilemmas caregivers face when balancing their own well-being with that of the individuals they support.
(2) Balancing caregiving responsibilities and personal life: This main theme and its sub-themes could investigate the connection between the family caregivers’ duties and maintaining an enjoyable social life. For example, it could examine how family caregivers schedule their time to accommodate the needs of stroke survivors, along with the difficulties and strategies for achieving equilibrium between caregiving and maintaining a fulfilling social life.
(3) Impact of environment on the caregiving role: This main theme and its sub-themes could explore the influence of the environment on family caregivers, considering the social and physical aspects for both caregivers and stroke survivors. It could emphasise the crucial function of social support in caregiver well-being and fulfilment of their duties, as well as how the physical environment can impact caregiving.
(4) Personal experience and perceptions of the caregiving role: This main theme and its sub-themes would examine the personal, emotional, and psychological aspects of family caregivers’ experiences, focusing on their perception of their skills, expectations, and the influencing factors. The analysis would use the participants’ sociodemographic information to gain a deeper understanding of how personal factors interact with their role as family caregivers.
The four key themes are aligned with the ICF domains. Theme 1 and its sub-themes relate to the domain of ‘functioning’, while theme 2 relates to the domain of ‘activities and participation’. Theme 3 and its sub-themes cover the sub-domain of ‘environmental factors’, and theme 4 and its sub-themes address the sub-domain of ‘personal factors’.
This qualitative study aims to enhance our understanding of the experiences of family caregivers of stroke survivors in Burkina Faso. By including a variety of viewpoints, the study will provide accurate information about the challenges and issues that these caregivers face in their day-to-day lives. Previous research on this topic in the sub-Saharan African context has been limited,22–24 with minimal emphasis on exploring the various aspects covered by the ICF domains. This restricted approach failed to capture the extent of the experiences of family caregivers.
Using the ICF model as a conceptual framework will enable a comprehensive exploration of family caregivers’ lived experiences, investigating the various limitations they encounter in their caregiving role, and the personal and environmental factors that may act as barriers or facilitators in fulfilling their caregiving responsibilities. By considering the physical, psychological, and social dimensions of family caregivers’ experiences according to the ICF components, the study will adopt a holistic and nuanced approach, facilitating a comprehensive understanding of their daily concerns. Consequently, the results of the study are expected to be more exhaustive, reliable, and better suited to inform policies and potential support programs for family caregivers caring for stroke survivors in Burkina Faso.
This study presents methodological strengths that will bolster the credibility of its findings. Using ICF framework for classifying data will enhance the accuracy of our future results. To ensure transparency and consistency in our approach, we will adhere to the COREQ criteria and the Lincoln and Guba standards. Moreover, this study represents the first qualitative exploration of the experiences of stroke survivors’ caregivers in Burkina Faso. The results will therefore contribute to advancing knowledge in the field of stroke research. Nevertheless, it is essential to recognize a limitation to this coming study. Being a qualitative approach, the impact of researchers’ subjectivity on data analysis should not be overlooked. However, all the objective strategies planned for this study should minimise this impact.
This qualitative study has the potential to shed light on the various problems encountered by family caregivers of stroke survivors in Burkina Faso. By exploring different facets of their experiences, this study aims to provide novel insights on the management of stroke-related repercussions in this country, and fill gaps in stroke research in sub-Saharan Africa.
Conceptualization, F.O., G.M.K., O.L.G.A.; Methodology, F.O., G.M.K., O.L.G.A.; Validation, F.O., G.M.K., O.L.G.A.; Writing—Original draft preparation, F.O., G.M.K., O.L.G.A.; Review and Editing, F.O., G.M.K., O.L.G.A.; Visualization, F.O., G.M.K., O.L.G.A.; Supervision, O.L.G.A. All authors have read and approved the final version of the manuscript.
The research team would like to thank Dr Boukaré Ouédraogo for his help with the administrative procedures required to obtain approval for this research.
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Is the rationale for, and objectives of, the study clearly described?
Yes
Is the study design appropriate for the research question?
Yes
Are sufficient details of the methods provided to allow replication by others?
Yes
Are the datasets clearly presented in a useable and accessible format?
Not applicable
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Public Health, Non-communicable Diseases, Research Methodology.
Alongside their report, reviewers assign a status to the article:
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Version 1 16 Oct 23 |
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Provide sufficient details of any financial or non-financial competing interests to enable users to assess whether your comments might lead a reasonable person to question your impartiality. Consider the following examples, but note that this is not an exhaustive list:
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