Experiences of women living with HIV who underwent long loop excision of the transformation zone (LLETZ) in selected hospitals of Vhembe district, Limpopo province, South Africa

Study design

This qualitative study employed a phenomenological approach (PA) as its conceptual framework to explore the personal experiences of women living with Human Immunodeficiency Virus (HIV) who have undergone Large Loop Excision of the Transformation Zone (LLETZ). The phenomenological approach is particularly effective in capturing the nuances of these women's experiences, as it seeks to understand the essence of their situations by asking, “What is this or that kind of experience like?” Unlike other qualitative methods, phenomenology aims for a descriptive understanding of pre-reflective experiences without imposing categories, classifications, explanations, or meanings (Van Manen, 2017).

The study specifically focused on women of reproductive age living with HIV, going beyond typical qualitative inquiries to provide a rich, detailed account of their experiences with LLETZ. The roots of phenomenology trace back to the early 20th century, with significant contributions from philosophers such as Heidegger and Gadamer, while also being grounded in the foundational work of Edmund Husserl (Neubauer et al., 2019). This framework asserts that "lived experiences are an interpretative process situated in an individual's lifeworld," where the observer inherently influences understanding through their unique perspective (Neubauer et al., 2019). Additionally, Bynum and Varpio (2018) highlight that phenomenology seeks to uncover deeper layers of human experience, which often remain hidden beneath conscious awareness. This study also explored how an individual's lifeworld—defined as the world as it is pre-reflectively experienced—affects these obscured dimensions. The researchers actively engaged in the interpretive process, as Tuffour (2017) emphasised, providing an essential aspect of phenomenological research.

The study design was exploratory-descriptive, focusing specifically on LLETZ interventions. In-depth, one-on-one, unstructured interviews were conducted to collect comprehensive and insightful accounts of the women's experiences. These interviews yielded rich descriptions that illuminate the realities faced by this population, aligning with the standards set by the SRQR (Standards for Reporting Qualitative Research) guidelines, which emphasize the importance of transparency, rigor, and the context of qualitative research.

Research paradigm

This study was conducted within an interpretive framework, which acknowledges the inherently subjective nature of individual experiences. It emphasizes that understanding these experiences is influenced by the perspectives and interpretations of the researchers involved in the study. By recognizing the researchers' role in the interpretative process, the study aims to provide a deeper insight into the complexities of the participants' experiences rather than merely presenting objective facts. This approach highlights the importance of context and personal interpretation in understanding the explored phenomena.

Study setting

The study was conducted in Vhembe District, Limpopo Province, South Africa. Vhembe is situated in the Northern part of Limpopo Province, sharing borders with Capricorn and Mopani districts in the eastern and western directions, Mozambique through the Kruger National Park in the south-east, Zimbabwe in the north and Botswana in the northwest. The district comprises four local municipalities: Thulamela, Makhado, Musina and the recently established Collins Chabane local municipality. Of 387 089 households, 51% are female-headed, totalling 194,980 (Vhembe District Municipality, 2020). Of 149 healthcare facilities within the district, two selected hospitals offer LLETZ services to women with premalignant lesions. All facilities refer women to these two hospitals for LLETZ. This study was conducted in private rooms in outpatient departments of the selected hospitals.

Study population, sampling and recruitment

The study focused on a specific group of women living with Human Immunodeficiency Virus (HIV) who underwent LLETZ in selected hospitals within the Vhembe District of Limpopo Province, South Africa.

Sampling technique

This study employed a purposive sampling technique, allowing researchers to select participants based on specific characteristics relevant to the phenomenon under study. According to Brink et al. (2014), purposive sampling is grounded in the researcher's judgment to identify individuals who are either typical representatives of the study phenomenon or possess specialized knowledge. In this study, the selected participants were women aged 18 to 44 years, living with HIV, who had previously undergone the Large Loop Excision of the Transformation Zone (LLETZ) procedure.

Recruitment process

The recruitment process occurred in selected hospitals' outpatient departments (OPD) during gynaecology clinic days. To identify potential participants, the researcher collaborated with the nurse assisting the gynaecologist, who was requested to refer eligible women to the researcher. This ensured that only those meeting the inclusion criteria were approached. Once referred, the researcher invited each potential participant to a private consultation room to ensure confidentiality and comfort. The researcher introduced herself, explained the purpose of the study, and provided details about the in-depth, unstructured interviews. Participants were given ample time to ask questions, and informed consent was obtained before proceeding. To initiate the interview, participants were first asked about their understanding of the LLETZ procedure, followed by the central research question.

Sample size determination

The sample size was determined by data saturation, the point at which no new information emerged from additional interviews. Although the initial plan was to interview seven participants, including two for a pretest, the study was concluded when saturation was reached with the seventh participant. The two pretest participants were included in the final analysis, as their contributions were relevant and aligned with the study's objectives.

Ethical considerations

This study adhered to strict ethical guidelines to ensure participants' protection, rights, and well-being. The research received approval through a rigorous multi-step process. It was first reviewed by the Department of Public Health at the University of Venda, followed by the Faculty of Health Sciences Higher Degrees Committee and the University Higher Degrees Committee, before final approval from the University of Venda Human and Clinical Trial Research Ethics Committee, which granted an Ethical Clearance Certificate (Ethical Clearance no: FHS/23/PH/56/1801). Further permission was sought through the National Health Research Database (NHRD) from the Limpopo Department of Health (DoH) to conduct the study in two selected hospitals in Vhembe District (Ref: LP_2024-02-013). Approval was granted on the condition that a formal permission letter be submitted to the Vhembe District Health Department one week before data collection. The district health department subsequently issued a permission letter, which was presented to the hospital management. Before data collection, the researcher reported to the Operational Manager’s office in the OPD to ensure transparency.

Written Informed consent was obtained after participants were thoroughly informed about the study's purpose, procedures, and expectations. They were assured of their right to withdraw at any time without consequences, and confidentiality was emphasized, ensuring that their identities would not be disclosed. Participants voluntarily signed consent forms, confirming their willingness to participate. The principle of beneficence was upheld by ensuring emotional well-being through support from social workers and psychologists in the selected hospitals. The researcher remained observant for signs of distress during interviews and allowed participants to express concerns. Vulnerable individuals or those experiencing acute distress were excluded to prevent harm. Confidentiality was maintained through data coding (e.g., P1, P2, P3) to uphold the principle of justice, preventing linkage between responses and participants' identities. Names appeared only on consent forms, which were securely stored and discarded after the study. The consent form was also translated into Tshivenda, Xitsonga, and Sepedi to accommodate non-English-speaking participants.

Data collection tool and method

In-Depth unstructured interviews

This study employed a self-report technique, utilizing in-depth unstructured interviews to explore participants' experiences with LLETZ. Each interview took place in a private room within the selected hospitals, ensuring confidentiality. The researcher encouraged open-ended discussions, using probing and prompting techniques to allow participants to elaborate on their experiences. A central question guided the interviews:

To maintain consistency, the researcher followed a structured approach, using paraphrasing and clarification techniques to align the interaction across all participants. Audio recordings supported data collection to capture the conversations accurately. Additionally, field notes documented non-verbal cues, enhancing the depth of data interpretation. Bracketing techniques ensured the researcher remained objective, reducing potential biases and capturing an authentic account of participants’ experiences (Alase, 2017). The study utilized semi-structured interview guides in the supplementary materials included with this paper for further review (See supplement 1).

Pretest

A pretest was conducted to evaluate the clarity and effectiveness of the interview questions and data collection tools. Two participants from the target population participated in this phase, and their responses were included in the final study as their insights were deemed relevant and valuable. The researcher ensured that the recording devices, notebook, and other tools were in optimal working condition before the interviews began. The functionality of the tape recorder was verified, including battery lifespan, and spare batteries were prepared to prevent disruptions. The pen and notebook were checked to ensure they were suitable for detailed notetaking. Interview durations were monitored, ensuring they did not exceed 40 minutes. This phase also allowed the researcher to refine probing techniques, ensuring that the questions elicited detailed narratives rather than simple ‘yes’ or ‘no’ responses.

Measures to ensure trustworthiness

Credibility

Credibility was ensured through rigorous methodological adherence, with ethical considerations guiding all stages of the research. Institutional relationships were established before interviews commenced, ensuring smooth access to participants. Data collection combined in-depth interviews with observational field notes, allowing for a comprehensive exploration of LLETZ experiences. A purposive sampling technique was applied to ensure that participants were appropriately selected. The study adhered to the inclusion and exclusion criteria outlined in Section 3.4.3. Data robustness was reinforced through cross-checking findings with existing literature, ensuring alignment with broader research insights. Data saturation was confirmed as no new themes emerged by the seventh interview.

Transferability

The study parameters were clearly defined to support transferability, allowing future researchers to determine applicability to other contexts. The study was conducted in two purposefully selected hospitals in Vhembe District, Limpopo Province, as they were the only facilities offering LLETZ services in the region. The research timeline covered one month in 2024, with seven interview sessions lasting 30 to 50 minutes. Though the findings may not be universally transferrable, they provide a valuable foundation for comparison in future related studies.

Dependability

The research process was documented to ensure dependability, including detailed accounts of the research design, data collection, and analysis (Brink et al., 2014). Primary data sources, including audio recordings (AR), field notes (FN), transcripts (T), and reflexivity notes (RN), were archived systematically for transparency and traceability of the research process. A predefined data management and analysis plan guided the data collection. The rigorous documentation ensured consistency, allowing future studies to replicate or validate findings.

Confirmability

The researcher ensured objectivity and neutrality by setting aside personal interpretations during data collection. Subjective reflections were only revisited during data analysis and interpretation, preventing undue influence on participants’ responses. Field notes captured non-verbal expressions cross-referenced with audio transcripts and reflexivity notes to ensure a comprehensive dataset. Triangulation was applied through multiple data sources, and findings were validated against established literature, strengthening the study’s credibility and reliability. The researcher’s background as an oncology nurse specialist in colposcopy clinics, alongside supervisory guidance, contributed to the study’s credibility and expertise-driven approach.

Data collection

Data were collected in outpatient departments of the selected hospitals in Vhembe District, Limpopo Province. To facilitate smooth research operations, permission letters were submitted directly to the Registry Departments of the selected hospitals rather than the Chief Executive Officers (CEOs), as per the institutions' administrative structures. Requests were also made for a private interview room and approval to engage hospital psychologists and social workers in case of participant distress. On gynaecology clinic days, the researcher worked with nurses assisting the gynaecologist in identifying eligible participants based on the study’s inclusion criteria. Once identified, women were referred to a private interview room, where in-depth, unstructured interviews were conducted.

Each interview followed a structured approach, beginning with welcoming and greeting the participant, researcher self-introduction, study purpose explanation, and consent acquisition. Participants were asked to share their understanding of LLETZ to initiate discussion, followed by the central research question. Interviews were conducted in a language preferred by the participant, ensuring clarity and comfort. Probing, paraphrasing, and follow-up questions were applied based on participants’ responses and non-verbal cues. Each interview concluded with the researcher confirming the accuracy of the participant’s responses, reiterating confidentiality, and expressing gratitude for their contributions. All interviews were conducted on the same day to minimize logistical challenges and travel expenses. Each session lasted 30 to 50 minutes, and data saturation was confirmed after seven interviews. One additional participant was interviewed instead of the originally planned two to accommodate recruitment challenges, ensuring no new insights emerged beyond the seventh interview.

To validate responses, member checking was conducted throughout the interviews. Field notes were taken in real-time, and audio recordings were transcribed and documented in reflexive journals after each session, away from participants (Alase, 2017). The study specifically examined women living with HIV and their experiences with LLETZ procedures in 2024, ensuring that findings reflect recent clinical and social realities within the targeted demographic.

Data organization and preparation for analysis

The organization and preparation of data for analysis were done as follows: Items of information gathered included audio records (AR) and field notes (FN), which provided significant reflections of non-verbal cues demonstrated by each participant (P). Transcripts (T) were created from translated voice recordings. Reflexive notes (RN) of each participant represent the researcher`s reflections on collected data done away from the interview site. These were organized/grouped without using the real names of participants. Instead, they were arranged in the sequence of interviews, labeled as P1, P2, P3 etc. The first group, P1, consisted of (AR1, FN1, T1 and RN1), corresponding to the participant interviewed first. The data for subsequent participants followed the same pattern, with P2 (AR2, FN2, T2 and RN2) for the second participant and so on. This organized data will be kept in the University Library. The Tesch coding procedure was implemented in the thematic analysis (Creswell & Creswell, 2017).

Data analysis

The data collected in this study was analyzed using Tesch’s thematic coding procedure, a structured approach that ensures a comprehensive and rigorous thematic analysis (Creswell & Creswell, 2017, 2018). This method involved systematic transcription, coding, categorization, and theme development, allowing in-depth exploration of participants' lived experiences with LLETZ.

The analysis began with the repeated listening and transcription of audio recordings from each participant. The transcriptions were completed in English, and each participant's written text file (T) was generated in Microsoft Word. Each transcript was then carefully examined alongside field notes (FN), which captured non-verbal expressions, behavioral observations, and contextual details recorded during interviews. Additionally, reflexive notes (RN) were written for each participant on the day of the interview, away from the participant, to document the researcher’s reflections, interpretations, and observations. To extract meaningful insights, all transcripts, field notes, and reflexive notes were read and re-read multiple times to identify key patterns, emerging ideas, and recurring concepts. A color-coding technique was applied to organize these patterns into initial themes, ensuring that each emerging topic was systematically categorized (Annexure IX). The iterative reading process further refined the analysis, allowing for a deeper understanding of how each category interrelated and contributed to the overall dataset. This process also facilitated the identification of sub-themes, ensuring that nuanced aspects of participants’ experiences were adequately captured.

Once the primary themes and sub-themes were established, all coded data material corresponding to each theme was gathered, reviewed, and analyzed in-depth. Throughout this process, the researcher maintained a critical awareness of personal preconceptions and biases, employing bracketing techniques to ensure that the findings authentically reflected participants' experiences rather than researcher assumptions. A final re-reading of the entire dataset was conducted to verify that all relevant data had been appropriately classified. No unclassified items remained, confirming the completeness and consistency of the thematic analysis. This structured and rigorous analytical process ensured that the study's findings were credible, transferable, and deeply rooted in participants’ lived realities.

Theme 1: LLETZ intervention process and outcomes

Participants recounted their experiences leading up to their LLETZ biopsy results. They expressed these results differently; some referred to histology results as ‘not well’, indicating malignancy, ‘good’ or as ‘there is nothing that they (professionals) see’, implying benignancy. Some participants referred to it as cancer or the disease. Most participants experienced malignant outcomes, while others experienced benign outcomes.

Another participant, though cancer was diagnosed, expressed the prognosis experienced as:

One participant, when asked what the results were, replied:

Theme 2: Physical experiences

The physical experiences of the participants varied, with many reporting pain and discomfort associated with the procedure and recovery process. Participants described their experiences as follows:

One participant provided the aggravating factors behind the discomfort experienced and the length of time it took:

Some participants felt no pain:

Despite the initial pain, many participants found that their symptoms improved post-procedure. As one noted:

Recovery was another critical sub-theme, with several participants discussing their healing process regarding pain, bleeding and tissue integrity. For instance:

About bleeding, variance was also observed:

For other participants, it took longer:

One participant, aware of the impact HIV could have on tissue integrity, expressed concern and took proactive measures to ensure speedy recovery:

Theme 3: Psychological Experiences

Participants reported a range of psychological responses to their diagnosis and treatment. Many displayed a notable level of acceptance and resilience, as illustrated by the following statements:

This acceptance often seemed linked to the support they received from their families and partners. However, anxiety and stress were also prevalent. One participant described her initial reaction to the diagnosis as follows:

Another participant, reacting to the introduction of surgical intervention, said:

The uncertainty about the future and fear of a life-threatening illness were common themes:

The effect of certainty about health status was also expressed:

Theme 4: Psychosocial support

Family and partner support played a significant role in participants' experiences. One participant shared:

Other participants also emphasized the support received from their husbands:

Community and peer influence also emerged as an essential factor. Discussions with peers provided a source of comfort and shared experiences, as reflected by the following statement:

The participant who had a supportive husband learned about others' negative experiences while waiting in the queue:

Theme 5: Financial support

In addition to other necessary support, financial assistance for transportation to subsequent hospital visits for LLETZ procedures is crucial. Travel costs, including public transportation, can create a significant burden, making targeted financial help essential for ensuring patients can consistently attend their appointments and receive proper care.

Theme 6: Misconceptions and education

Participants demonstrated several misconceptions about the LLETZ procedure. These misconceptions were clarified through education. This highlights the importance of providing thorough pre-procedure counseling to alleviate unnecessary fears. For example, one participant initially feared the procedure, believing it to be more invasive than it actually was:

Another misunderstanding was about the intervention site, affecting intervention outcome expectations. Participant attributes three miscarriages to HIV and vaginal bleeding. The participant hoped that the non-LLETZ-related bleeding would be addressed, mistakenly believing the procedure was done in the uterus: This is clear from the third participant’s experience:

Theme 7: Recommendations and reflections

Participants provided several recommendations based on their experiences, emphasizing the importance of early diagnosis and maintaining a positive attitude:

Another participant encouraged others to take proactive health measures:

Maintaining a positive attitude was also crucial, as one participant advised:

This perspective was often linked to the support they received and their coping strategies.

Acceptance of LLETZ diagnostic outcomes and disclosure are identified as coping strategies:

Theme 8: Time factor

Alongside their experiences, women also highlighted the significance of time. LLETZ biopsy histology results showed malignancy for one participant, who took decisive action that led to positive outcomes:

Subsequent participants agree that prompt action leads to positive outcomes:

Once again, the time factor was highlighted concerning the turnaround time for results:

The findings of the thematic analysis underscore the intricate and diverse experiences of women living with HIV and undergoing LLETZ treatment. Essential themes from the participants’ narratives encompass psychological resilience, physical discomfort and the significant role of social support. Misconceptions about the procedure highlight the necessity for comprehensive patient education. The recommendations put forward by the participants emphasize the importance of early detection and a positive outlook as essential components of managing their health and well-being. These insights can provide valuable guidance to healthcare professionals and policymakers in enhancing support systems and educational resources for women facing similar treatments.