Defining infertility: a qualitative interview study of patients and physicians

ABSTRACT

Purpose

To investigate if infertility patients and physicians apply a traditional biomedical model of disease in their conceptualisation of infertility, examine any contradictions and conflicts in conceptualisations, and examine areas of concordance and discordance between physicians and patients.

Methods

Semi-structured interviews were conducted with 20 infertility patients and 18 infertility physicians between September 2010 and April 2012. Interviews were analysed qualitatively to determine physician and patient conceptualisations of infertility, reactions to the definition of infertility as a disease, and potential benefits and concerns related to application of a disease label to the condition.

Results

Most physicians (n = 14/18) and a minority of patients (n = 6/20) were supportive of defining infertility as a disease. Many of the patients who agreed with classifying infertility as a disease expressed that they had not personally defined it as such previously. Physicians (n = 14) and patients (n = 13) described potential benefits of a disease label, including increases in research funding, insurance coverage, and social acceptability. Some patients (n = 10) described potential stigma as a negative consequence. When describing appraisals of infertility, both physicians (n = 7) and patients (n = 8) invoked religious/spiritual concepts. The potential for religious/spiritual appraisal to contribute to stigmatising or de-stigmatising infertility was discussed.

Conclusion

Our findings contradict the assumption that infertility physicians and patients are fully supportive of defining infertility as a disease. While potential benefits of the disease label were recognised by both groups, caution against potential for stigmatisation and unsolicited invocation of religion/spirituality suggest a more holistic model may be appropriate.

KEYWORDS:

• Infertility
• patient-physician communication
• patient centred care
• medical model
• advocacy

Acknowledgments

This project was supported by the NIH Women’s Reproductive Health Research (WRHR) programme (K12-NIH-HD063117). We would also like to thank Adam Lewis and Laura Shinkunas who assisted by conducting and transcribing interviews, respectively, as well as coding and analysing the data.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The work was supported by the NIH Women’s Reproductive Health Research (WRHR) [K12-NIH-HD063117].