HIV-Positive Women's Participation in Phenomenological Research: A Liberating Encounter

Background and Purpose: Research on the emotional impact of participating in qualitative interviews in grounded theory methodology or content analytic approaches suggest emotional benefits, such as feelings of well-being and a sense of empowerment in populations such as individuals living with developmental disabilities or bereaved relatives. However, little is known about the impact of participating in phenomenological research, using phenomenological interviewing techniques. This study fills this gap in literature by exploring the emotional effects of participation in a phenomenological research study with HIV-positive, married women, living in poverty in Northern India. 

Method: Thirty three women were interviewed, recruited through two non-profit agencies in Northern India. Participants were low income, married, HIV-positive women in the age group of 19-45 who served as primary caregivers to their HIV-positive family members. At the end of a phenomenological interview, participants were asked questions about two domains. 1.) Thoughts and feelings that came up for them, about sharing their personal and intimate lives with the researcher. 2.) How they would describe their experience of research participation. 

 Data were coded in ATLAS.ti qualitative software and analyzed inductively. Rigor was enhanced through member-checking and peer-debriefing. A content analytic approach was employed to analyze data that emerged from the two interview domains. Responses were read several times in search of key words and examined during data analysis. For the purpose of examining language and categorizing text into units that represent similar meanings, content analysis was found suitable. Verbatim quotes are used to ensure an authentic representation of participating women’s voices.  

Results: Participants used words such as ‘ felt free’, ‘freeing’, ‘felt sisterhood’ and ‘felt stronger’  in describing their research participation experience. Respondents reported feeling that their experience of participating in phenomenological interviews was ‘liberating’ because they had an opportunity to speak up and say their truth. The interviewing process enabled women to share their most difficult moments in providing care for other HIV-positive family members. Participants reported being able to express themselves and share their stories in the context of having experienced stigma and discrimination in their families and health care settings that had led to feeling ‘silenced’. Pathways that enabled women to experience participation in research as ‘liberating’ included crying which was expressed as relief as well as long pauses and silences between questions and answers that forced them to reflect about themselves, their thoughts and actions. 

Conclusions and Implications: This study sheds light on the emotional benefits of research participation for vulnerable populations and has implications for the use of phenomenological interviewing in social work practice and research with HIV-positive women. Recommendations based on this research experience include 1.) A wider application of pauses and silence during the interviewing process and the enabling of crying moments for therapeutic use to the respondent and 2.) The use of phenomenological in-depth interviewing to assist women forge a stronger connection with the self, leading to greater self-awareness.