This study employed a qualitative research interpretive phenomenological design to explore the lived experiences of caregivers of individuals with epilepsy in Gaborone, Botswana. Interpretive phenomenology was appropriate because the study sought not only to describe caregiving experiences, but also to understand how caregivers made sense of those experiences within their social and caregiving context.^21,22,23,24 This approach was well suited to capturing the emotional, psychological and social dimensions of epilepsy caregiving including caregiving challenges, coping strategies and support systems available to caregivers. Interpretive phenomenology goes beyond describing the essence of the phenomenon to examining meaning, context and the way experience is understood by those living it.^21,22,23,24

This study was conducted in Gaborone, the capital city of Botswana, located in Botswana’s South-East District. Princess Marina Hospital (PMH), Neurological Department at PMH, serves as the national referral centre for neurological care, including epilepsy. The Neurology Department at PMH offers a variety of specialised services, including an outpatient epilepsy clinic, inpatient care and multidisciplinary follow-up for both acute and chronic neurological conditions. The epilepsy clinic manages patients with new-onset seizures, refractory epilepsy and seizure-related comorbidities, receiving referrals from district and primary hospitals throughout Botswana. As a result, the clinic’s patient demographic includes both urban residents and those referred from rural and remote areas. During the study period, the department was staffed by a limited number of neurologists, along with medical officers, specialist nurses and allied health professionals such as physiotherapists and social workers, available upon referral.

The targeted population for this study included informal caregivers of patients who received care at PMH, Neurological Department. Informal caregivers were defined as unpaid family members, relatives or close community members who provide day-to-day care for individuals living with epilepsy. Eligible participants included parents, siblings, spouses, relatives or guardians aged 18 years or older who had been actively involved in caregiving for at least 1 year.

In this study, the sample size was not predetermined; instead, it was determined by thematic data saturation.^25,26 A sample of between 10 and 30 participants was expected.^27,28,29,30 Thematic saturation was assessed concurrently with data collection through ongoing review of interview transcripts and emerging codes. Saturation was first observed after the 10th interview, when no new themes or substantive insights were identified. Data collection was subsequently extended to 13 participants to confirm saturation and ensure that no additional themes emerged.³⁰

Purposive criterion sampling was used to select participants. Medical records at PMH were first reviewed to identify patients diagnosed with epilepsy, after which their primary informal caregivers were identified. Participants were deliberately selected based on predefined inclusion criteria, particularly caregiving duration, relationship to the patient and active involvement in daily care. Efforts were made to ensure variation in caregiving experiences by selecting caregivers from different communities within Gaborone and with diverse relational roles (e.g. parents, spouses, siblings). This approach ensured that the sample captured a broad range of perspectives relevant to the study objectives.

The interview guide was developed through a comprehensive review of pertinent literature on caregivers of individuals with epilepsy in Botswana. This process informed the formulation of open-ended questions specifically designed to elicit detailed narratives of caregivers’ experiences. The guide encompassed a variety of topics, including caregivers’ overall experiences, daily challenges encountered, emotional burdens, financial strains and the effects of caregiving on employment and personal time. Additionally, it addressed coping strategies, sources of support from family, friends and the healthcare system and caregivers’ self-care practices. The opening question of the interview is: ‘Can you describe your experience as a caregiver for someone with epilepsy?’ This question sets the stage for a conversation in which participants can share their personal stories and perspectives.

Interviews were conducted in the participants’ preferred language, either English or Setswana. All interviews were audio-recorded, anonymised, assigned unique numeric codes and transcribed verbatim by the principal researcher. Interviews conducted in Setswana were translated into English during transcription. To ensure accuracy, the audio recordings were consulted to resolve any inconsistencies, with input from the research assistant when necessary. The transcripts and translations were further verified by Tebogo T. Mamalelala and Esther I. Ntsayagae.

The interviews took place in participants’ homes to create a comfortable environment that encouraged open and authentic responses. Probing questions were used during the interviews to elicit deeper exploration of participants’ thoughts and feelings, thereby enhancing the richness of the collected data. All participants signed a consent form to participate in the research and were informed that their responses would be kept confidential. The interviews were recorded, and significant observations of the participants that could not be captured by audio recording were noted as field notes. Each interview lasted between 8 min and 38 min, with an average duration of 27 min.

Data were analysed using Thomas’s General Inductive Analysis (GIA), a systemic approach that allows themes and patterns to emerge directly from participants’ narratives without imposing pre-existing theoretical frameworks.³¹ This method condenses raw qualitative data into a concise, organised format that remains closely linked to the study objectives and grounded in participants lived experiences.

All interviews were transcribed verbatim by Jappy M. Toe and checked by Tebogo T. Mamalelala, including pauses, non-verbal cues and emotional expression. Transcripts were checked against the original recording for accuracy. Using an inductive approach, open coding was applied by Jappy M. Toe, Tebogo T. Mamalelala and Esther I. Ntsayagae. to break transcripts into smaller segments. The codes were derived directly from the data rather than guided by prior assumptions.

Codes were compared and clustered into broader categories representing recurring ideas and shared experiences. Through an iterative process of refinement, these categories were reorganised and consolidated into themes that encapsulated the central issues expressed by caregivers. Themes were reviewed to ensure internal consistency and accurate representation of the data. Findings were presented narratively and supported by direct participants quotations to illustrate and validate the themes. Ensuring faithful representation of caregivers’ voice without pre-imposed theoretical constraints.

Prolonged engagement, triangulation, member checking, peer briefing and persistent observation can strengthen credibility of the study.³⁰ Credibility was also established through member checking with participating caregivers. After the interviews, preliminary themes and interpretations were shared with participants. Participants were asked to confirm whether the findings accurately reflected their experiences. Their feedback was used to refine the final themes.

Research assistants participated in a 2-day training session to establish credibility and consistency in data collection before the principal researcher began collecting data. The researcher provided detailed descriptions of participants’ backgrounds, caregivers’ settings and specific challenges faced by caregivers in Gaborone to enhance transferability.

To ensure dependability, the researcher had the study’s procedures evaluated by supervisors, maintaining transparency throughout the research process.³⁰ Peers reviewed the clarity of the research methods and processes, while the research supervisor oversaw the study’s procedures. The researcher also ensured dependability by having the supervisor examine the collected data, its management and the data analysis process to confirm consistency.

Confirmability was established through reflexivity, acknowledging and managing the research team’s subjectivity. The team consisted of two co-investigators: Tebogo T. Mamalelala, a PhD-prepared nurse with experience in qualitative research, and Esther I. Ntsayagae, a mental health specialist and PhD-prepared nurse in the Department of Psychiatric Nursing. The principal researcher, Jappy M. Toe, who has extensive training in qualitative research, led the study with the support of trained research assistants involved in data collection. Although the research team did not have a clinical relationship with the participants, they possessed a strong understanding of the broader context of epilepsy care, which informed their insights without introducing bias. To minimise the influence of preconceptions during data collection and analysis, the principal researcher engaged in reflexive journaling, sought regular feedback from supervisors and facilitated peer discussions during the coding and theme development process. These strategies were crucial in ensuring that the findings remained grounded in the participants’ lived experiences while acknowledging the interpretative role of the researcher. Importantly, the researchers had no prior relationships with the participants before recruitment, which allowed for a more objective inquiry.

Permission for the study was granted by the Office of Research and Development (ORD) Institutional Review Board (IRB) at the University of Botswana (UBR/RES/IRB/BIO/GRAD/341) and the Ministry of Health (HPRD:6/14/1). Additionally, approval was obtained from the IRB Ethical Committees at Princess Marina Hospital (PMH 2/11AII [796]). This study adhered to the ethical principles of the Declaration of Helsinki, ensuring informed consent, anonymity, confidentiality and voluntary participation. Written informed consent was secured from all participants prior to study involvement, with the right to withdraw at any time free from coercion or undue influence.

Thirteen caregivers participated in the study. Participants ranged in age from 30 years to 71 years, with caregiving experience spanning 1–41 years. An initial sample of 10 caregivers was expanded to 13 to achieve data saturation. Caregivers were purposively recruited and included mothers, fathers, siblings, spouses and other relatives. Participants represented varied ages, genders, educational levels and employment status, providing a broad range of caregiving perspectives within the Botswana epilepsy context. Demographic characteristics of participants are summarised in Table 1.

The experiences of caregivers providing long-term care to individuals with epilepsy are shaped by a complex interplay of emotional, physical and social challenges. Several key themes have emerged from their narratives, illuminating the profound impact of caregiving on their well-being. These themes include the emotional burden of fear and anxiety, the physical and mental exhaustion inherent in their roles, the pervasive feelings of depression and helplessness and the stigma and isolation they encounter both in their communities and within their personal lives. Together, these themes paint a vivid picture of the difficulties faced by caregivers, highlighting the need for greater support and understanding of their struggles (see Table 2).

The findings have important implications for nursing practice, education, policy and future research. In practice, caregivers should be recognised as integral partners in epilepsy care. Routine assessment of their psychological well-being, stress levels and support needs should be incorporated in care delivery. Family-inclusive and caregiver-centred care approaches are essential to improving both caregiver and patient outcomes. Nursing education should prepare nurses to identify caregiver distress early, provide education, offer emotional support and make appropriate referrals.

From a policy perspective, integrating epilepsy care into Botswana’s community-based home care services could provide structured support through education, counselling, medication monitoring and stigma reduction. The development of respite care services is particularly critical, as continuous caregiving without relief was a major contributor to emotional and financial strain. These measures aim to enhance support for caregivers and align epilepsy care with a more responsive, caregiver-centred health system.

Future research should employ longitudinal designs with larger and more diverse samples to examine changes in caregiver burden over time and evaluate the effectiveness of targeted interventions. Further exploration of cultural and spiritual coping mechanisms, as well as comparative studies involving caregivers of other neurological and psychiatric conditions, would deepen understanding and inform comprehensive support strategies.

This study focused on informal, unpaid caregivers and the findings should be interpreted within this context. While caregiving experiences may differ from those of formal, paid caregivers, the results are likely transferable to settings where informal, family-based caregiving predominates.

In particular, the findings apply to similar rural and resource-constrained settings in Botswana, South Africa, and across sub-Saharan Africa, where health system limitations and reliance on family caregivers are common. Shared contextual features such as limited access to healthcare services, fragmented referral systems and the central role of households in supporting care the relevance of these findings beyond the study setting. The provision of detailed contextual descriptions, including caregiving relationships, household structures and health system barriers, further enables readers to assess the applicability of the findings to comparable environments.

However, the sample composition may have limited the breadth of experiences captured. Although participants varied in age, sex and caregiving relationship, the sample was largely composed of family caregivers, particularly mothers. As a result, some perspectives, such as those of male caregivers or less central family members, may have been underrepresented, and certain aspects of caregiving may not have been fully explored. Future research should include more diverse caregiver groups to enhance the transferability of findings across different contexts and populations.