Design

Interpretive interactionism.

Setting

USA.

Patients

5 men and 5 women aged 32–38 years who had symptomatic HIV disease (CD4 count <300) and identified themselves as having had spiritual or religious experiences that helped them to cope with their disease. 6 were European-American, 2 were Mexican-American, 1 was African-American, and 1 was Native-American.

Methods

During 2–3 hours of interviews, patients were asked to describe spiritual experiences and beliefs that helped them deal with HIV and to explain how these experiences changed their lives or their views of the meaning of their illness. Interviews were audiotaped and transcribed verbatim. Data were collapsed into themes over 3 iterations. Findings were corroborated by patients at initial and follow up interviews. Study patients and the staff and clients of 2 organisations that served people who were HIV positive reviewed the initial study report.

Main findings

3 major themes were constructed to show how personal meaning emerged from a rejecting social context and the knowledge that one had limited time to live. The first theme, purpose in life emerges from stigmatisation, depicted patients' multiple rejections from family, friends, and religious institutions. After they became HIV positive, patients separated from the larger society and a meaning emerged that was largely free from the values of established belief systems. Patients attributed their new spirituality to the opportunities that HIV provided to their lives (eg, to make a difference in the fight for acceptance). Obstacles and constraints informed meaning. Patients reconnected with family.

The second theme, opportunities for meaning arise from a disease without a cure, described how patients incorporated their illness and symptoms into their understanding of their spiritual being. When first diagnosed, most patients felt depressed and engaged in self destructive behaviour. Eventually, some encouraging or challenging event disrupted self destruction. Patients gained confidence in recovery, took more control, and selected treatments that felt right to them. The fear patients experienced when they realised that their time was limited was ameliorated by an awareness that there was still a lot of life before death and that all people eventually die. They became more hopeful, accepted health information, and actively sought social support.

The third theme, after suffering, spirituality frames the life, showed the development of a spiritual understanding of life. Patients cleared their lives of stressful and meaningless aspects (eg, hated jobs) and embraced those that strengthened their faith and defined personal meaning. Meaning in life involved finding ways to help others. Patients developed a personal philosophy to deal with unanswerable questions about death, and performed daily spiritual rituals. They began to experience a sense of empowerment to deal with whatever came up, and a desire to make changes in their lives.

Conclusions

In patients with symptomatic HIV disease, spiritual meaning emerged from the rejecting and stigmatising social context of HIV and from the experience of dealing with an incurable disease. After the experience of suffering, spirituality framed their lives.