Participant characteristics shown in Table 1 demonstrate the heterogeneity of sample. Women averaged 34.07 years (21–52 years). All had visited healthcare providers regarding their HPV infection in the 12 months preceding the interview. Half received a diagnosis from a gynecologist, fifteen percent from a general practitioner and remain from a primary healthcare provider. All saw a provider other than the one who initially diagnosed them.
Women were asked about their experiences with providers through a series of questions (Appendix1). The analysis of the data led to the extraction of three main categories, including: communication and counseling skills, commitment to professional principles, and HPV-knowledge of providers (Table 3). Details in parentheses following quotes represent the participant's identification number (W.=HPV-positive Woman, Pr.=Provider).
Needs and Perceptions of Iranian HPV-positive women about receiving health care
Example of codes
1. Communication and Counseling Skills
a. HPV Discussion
Skills in breaking bad news
Providing adequate HPV-information with understandable, colloquial language
Taking time to answer the patient's questions
Delivering HPV-information gradually
Avoid exaggerating or underestimating HPV risks
Communicating intentionally inexact about infection source
Counseling about anti-wart treatments
Listen intently to the patient and not to dominate the conversation
b. Emotional Support and Acceptance
Paying attention to the patients' feelings and concerns
Encouraging words to strengthen the patient's spirit
The need for compassionate doctors in the medical centers
Doctor's positive attitude towards the woman with an STI
c. Providing Recommendations
Explaining the risk and providing advice and solutions to reduce the risk
Discussing sexual practice, diet, alcohol and tobacco prohibitions or modification
d. Clinical Considerations
Not requesting for HIV and hepatitis tests at the first visit
Not sharing the colposcopy monitor with patient unless she wants
Explaining colposcopy before performing it
Not asking/ reporting low-risk HPV strains
2.Commitment to Professional Principles
a. Gaining Patients' Trust
Being honest with patient
Adopt non-judgmental attitude toward patient's sexual behavior
Building mutual trust
Discussing the current gaps in HPV-knowledge
Avoid try and error in patients' management
c. Confidentiality and Privacy
Visiting patients one by one
Clinic's staff awareness of the patient's secrecy
patient privacy in the gynecology clinics
Consider cultural sensitivity
b. Avoid Financial Misconduct
Avoiding humiliating behaviors towards poor patients
Introducing patients to governmental-funded services instead of private centers
Adopt scientific approaches
Avoid prescribing self-made medications
3.HPV-Knowledge of Providers
a. Adherence to Screening Guidelines
Adopt scientific management and avoid overuse tests
Screening eligible woman
Adherence to test intervals
Follow-up according to the national cervical cancer guideline
b. Avoid Misconceptions
Discussing the current gaps in HPV-knowledge
Citing conflicting views
Avoid exaggerating about HPV transmission by overusing protective equipment
Avoid Instilling fallacy that HPV has a treatment (self-made suppositories, fungi, and probiotic products)
HCPs' participating in retaining programs
c. Taking Multidisciplinary Approach
HPV women' need for multidisciplinary team
Wandering from the duality of therapists' opinions
Patients frequent referrals to be on the safe side
Women's wandering to find required specialist (Gynecologist-Infectious disease specialist-Oncologist-Urologist-Dermatologist-ENT specialist-Dentist)
Counseling women to refer to a genital warts or oral lesions specialist
1. Communication and Counseling Skills
Women diagnosed with HPV implied communicating preferences and needs in four sub-categories: HPV discussion, emotional support and acceptance, providing recommendations, and clinical consideration.
Women preferred face-to-face delivery of their results (HPV/cytology) to receive complex information about their problem's name, HPV types, symptoms, transmission, prevalence, consequences and treatments. Women sought information on other STIs, potential benefits of HPV vaccine, and the risk of HPV-related cancers. Women with abnormal cytology asked about HPV cofactors for cervical cancer. They mentioned some points that should be stressed when presenting HPV-information to patients: using plain language, avoiding over-simplifying the disease and sticking to the reality of HPV, gradually transmitting information at multiple appointments, comparing the prevalence of HPV infections and occurrence of cervical cancer (to diminish patients fear of cancer), and expressing that "no one can determine when and from whom a woman get HPV."
Participants showed frustration with providers who break diagnosis news in a way that instilled fear and anxiety.
"When I was told 'You have a problem but it's not cancer', it frightened me to death. I was bursting crying ... I didn't understand what she [doctor] was talking about."(W.16)
The terminology commonly employed by physicians, were mostly unfamiliar to women. Few women indicated that when a doctor considers HPV insignificant, they feel ignored.
"I was so scared. My doctor said: 'cancer patients don't mourn like you. HPV is not that important'. I think insomuch she sees cancer it’s gotten trivial for her."(W.26)
To prevent misunderstanding and ensure patient awareness, participants recommended that HCPs provide HPV information over several appointments. Often, patients wished they could ask doctor their questions between visits.
All providers offered examples of women's needs and questions regarding HPV. They implied points that were considered useful. A provider stated:
"Pointing out that HPV is common and most women are unaware of their infection changes women's attitudes toward diagnosing HPV from a threat to an opportunity to prevent cancer."(Pr.8)
To prove that most women with HPV will not develop CC, some providers compare the prevalence of HPV with the incidence of cervical cancer. They believed this comparison reduces patient anxiety.
Some patients expressed dissatisfaction with the time spent by physicians addressing their concerns. They implied time constraint as key barriers to high-quality care. "A few doctors take the time to talk to patient."(W.23)
Women's questions on HPV were often inadequately answered, particularly in specialized governmental referral clinics. "No gynecologist has the patience to answer questions."(W.12)
Few women reported even primary HCPs having referred them to the specialized clinic without explaining their health problems.
Women stated they see their doctor as a source of emotional support. Respondents were more satisfied with compassionate providers who can reassure frightened patients.
"Every illness needs a good doctor. The patient's thoughts are focused on doctor's words. My doctor treated me well. She gave me spirit."(W.2)
According to participants’ point of view, the cold, annoying, and repulsive behaviors of the doctor hinders successful follow-up and treatment. They found the doctor's excessive self-protection (e.g. wearing three pairs of gloves) repulsive, but HCPs attributed it to the insufficient knowledge of clinician.
HCPs had challenges discussing HPV treatment for patients. They acknowledged that telling patients that "HPV has no cure" makes them nervous. On the other hand, HPV infections will clear up or become undetectable on their own and this is promising. A provider stated:
"After saying that 'HPV's most common prognosis is clearance,' some women ask: 'Why hasn't my infection been cleared?' They ask about a test to check the immune system and what can be done to reduce the risk of cancer to negligible levels.”(Pr.5)
Women discussed feeling powerless if they can't do anything to maintain their health. Some providers pointed to providing simple, practical and inexpensive tips to strengthen immunity of patients. Women needed advice on sexual health too. A gynecologist-oncologist mentioned: "Due to cultural sensitivities, neither patients nor doctors are inclined to speak about sexual issues."(Pr.1)
Women with apparent genital warts needed additional information on surgical or medical anti-wart therapies.
Regarding clinical appointments, women needed to be treated gently and respectfully.
"I no longer go to sample due to the intense pain I experienced."(W.22)
Few women expressed anxiety due to hearing the term "precancerous and high-risk" and watching the colposcopy monitor during the procedure.
"I can't get that frightening colposcopy picture off my mind!"(W.9)
They wanted verbal or written information before the colposcopy procedure. They also preferred HIV and hepatitis tests not be asked at the very first visit.
2. Commitment to Professional Principles
Some HPV-positive women were disappointed with healthcare providers' performance. Their statements showed that few HCPs are not fully committed to professional principles.
Gaining Patients' Trust
Women stated very few doctors had recommended or prescribed unproven medications for HPV cure. Patients were not sure if it was a research project.
Most women pointed to the physicians’ success in earning patient confidence as a factor related to care continuity.
"I'm not worried at all because I never get cervical cancer. I'm tested regularly as my doctor said. And if I'm CIN-3[Cervical Intraepithelial Neoplasia], my doctors will fix it." (W.29)
Health professionals mentioned that discussing both what is and is not known about HPV prevents women from confusing and wandering.
"I explain intentionally vague about HPV-transmission to convince my patient that she could have contracted it in almost any way."(Pr.2)
HCPs emphasized that uncertainties such as HPV-vaccination of HPV-infected people should be addressed in HPV-discussion.
Confidentiality and Privacy
Women were less satisfied with physicians who unintentionally highlight stigma by judging patients' sexual behavior. They did not trust such HCPs and were reluctant to share private information with them. Participants noted that all staff dealing with sexually transmitted patients should be trained in patient secrecy.
“I think OB/GYN visits require the most privacy. I went to a famous GYN clinic. There were other patients in the room besides me. I was embarrassed. Imagine sitting next to a complete stranger who might hear you and talk about sensitive topics that are very difficult to discuss.”(W.10)
Avoid Financial Misconduct
Participants indicated lack of insurance coverage for diagnostic and therapeutic services. Patient pessimistic believes about financial misconducts of HCPs revealed in some interviews. "I paid 10,000,000 IRR for colposcopy in a private office. If my doctor had referred me here [Valiasr], I could've had a colposcopy for 400,000 IRR! She deliberately did not refer me here!"(W.14)
Few women were upset of HCPs who treat them based on their economic status.
"My doctor recommended colposcopy and when she found out that I had no money for it, she stopped explaining it and did not answer my questions"(W.17)
3. HPV-Knowledge of Providers
As an important obstacle to high quality HPV management, participants indicated inadequate knowledge and training in HCPs. Providers pointed to a lack of continuous and integrated training program for physicians and midwives.
Adherence to Screening Guidelines
Successful management of CC screening is hindered by guideline discordant. A 34-years-old HPV screening eligible woman reported:
"After my husband's genital warts, I went to a gynecologist. I was scared. The doctor said: 'It doesn't matter. Since you don't have a lesion, you don't need HPV testing."(W.31)
A few participants, on the other hand, reported another form of guideline discordant in which some gynecologists appeared to overuse screening tests to provide greater reassurance, whether the HPV-DNA test or the Pap test. To better monitoring of high-risk cases such as CIN-2, most providers have proposed a systematic national registry system.
Women exposed misinformation conveyed by a few HCPs who may lack current HPV information. A woman reported that a provider had recommended her cesarean section because of vaginal warts.
Using extra-protective equipment such as wearing three pairs of surgical gloves nonverbally indicated to a misconception that non-sexual transmission of the virus is serious.
Taking Multidisciplinary Approach
More than half of the women interviewed had seen at least three doctors in the 12 months before the interview. Satisfaction and HPV-knowledge did appear to rise among this subset of women.
Patients reported attending to a number of different HCPs including general practitioner, gynecologist-oncologist, dental professional, infectious disease specialist, dermatologist, dentist, urologist, nurse, lab technician, and midwife. According to participants' point of view, there is not an optimal cross-disciplinary referral system among gynecologists and other HCPs.
A woman with oral ulcers worried about HPV-related precancerous oral lesion. "I've seen ENT specialist and dentist to get other opinions just to be on the safe side."(W.28)
Participants indicated that physicians' conflicting opinions on HPV vaccination and using condoms in those already infected with HPV were among the reasons to frequent visits.