Table 3 Participating women’s experiences with HPV self-sampling

Location of self-sample

In the home: Women felt it was a more private, confidential and comfortable experience; they could complete it without embarrassment and shame.

Out of the home: There was mixed feelings regarding privacy and confidentiality when completed out of the home (e.g. park, LALC, mother’s groups).

Accessible

Accessible (in the home) and free. No need to travel long distances for a female GP, or wait and pay at a General Practice.

Privacy and confidentiality – shame and embarrassment

Self-sampling was private and confidential, with no shame or embarrassment. Women did not feel violated or lose their dignity.

Simplicity

Self-sampling was described as simple, easy, convenient, quick, and not too daunting.

Several women experienced some difficulty completing the test themselves.

In charge of Aboriginal women’s business^a

Women felt a sense of control over their own women’s business, health and wellbeing. Women found it to be a positive and personal experience, and they felt comfortable and at ease.

Comparison of HPV self-sampling to Pap test

Pap test – uncomfortable, painful, humiliating, daunting, shameful, embarrassing, degrading, intimidating, not confidential. Women do not like going to the Doctor and do not want a man involved in women’s business.

HPV self-sampling – easier, more private, discreet, comfortable, personal, dignified, appropriate, and quicker. Not as intrusive, evasive or awkward.

Self-sampling kit contents

High importance was place on the quality of the instruction cards:

(a) They were clear, easy to understand, straight forward – not having to sift through unnecessary readings.

(b) Illustrations for black women were good.

In the case a woman could not read, the Nurse could clearly explain the process and the picture cards supported this.

The women were happy they could keep the case the kit came in.

A non-transparent bag needs to be included in the kit for the sample to be returned to improve privacy and remove any shame.

The PHCN gave the women confidence in the service being professional

Women placed high importance on a trained professional (i.e. the PHCN) being present throughout the program, giving them confidence that it was accurate and professional. Some women would have preferred the PHCN (instead of the CEW) to explain the kit/process and take the completed sample.

Verbal communication of results

Women appreciated the verbal communication of results from the PHCN, particularly as many women could not understand them. This was described as ‘caring’ and gave women confidence in the entire program.

Unlikely that women would have completed a cervical screen had the HPV self-sampling test not been offered

Women commented on: never having completed a cervical screen until participating in this study; being hesitant, reluctant, frightened, or scared to go to the Doctor to have a cervical screen, even in the case that one woman had a family history of cervical cancer and understood the risks; postponing Pap tests, with women suggesting anywhere between 1 and 20 years before they thought they would be screened again.

Grateful of a potential lifesaving experience

Women (irrelevant of results) were grateful and happy they had been offered the self-sampling kit, and that it could have saved their lives.

Initial concerns with the Program

Women were not always forthcoming to completing the self-sampling, describing that they were initially nervous (e.g. unsure of accuracy of the test; previous painful experience with a pap test; worried of a positive result). However, these comments were followed by positive feedback about the test and increased confidence to complete the test next time.