MEDICAL / PSYCHOSOCIAL TOPIC:

Communication on
Sexuality, Intimacy and Reproductive Issues:
How Far Have We Come and Where do We Go from Here?
Anna Tsang RN,NP,MSN

Introduction

Early diagnosis, advances in antibiotic therapy, nutritional support and the implementation of a multidisciplinary approach for people with cystic fibrosis (PWCF) have led to a dramatic improvement in life expectancy. Today, more than one third of people living in United States, are over the age of 16. In Canada, among the 3250 people diagnosed with CF, more than 40% of them are adults.

"Education and counseling are needed…"

Similar to other young adults, as more people with CF enter adolescence and young adulthood, they have increased needs and desires to explore their reproductive potential, identify their sexuality and establish intimate relationships. Unfortunately for them, what seemed to be a natural part of growth and development may be met with many difficulties caused by delayed puberty, altered body image, secret worries of early death, reduced fertility in women and infertility in men. Education and counseling are needed to help those individuals to increase their understanding about CF, to eliminate misconception, to reduce unnecessary psychological stress and to achieve their optimal potential. Therefore, it is absolutely essential to include reproductive health education and counseling as an integral part of the day to day CF care.

My intention in this article is to assess the understanding we have gained from clinical experience, research and our patients so far by way of reviewing the literature published within the last 20 years (from 1980 to 2001). Sixty abstracts were collected from two main sources ( Medline and CINAHL) with 37 relevant articles consequently reviewed. The information obtained from these articles represented global opinions from international CF experts all over the world including Australia, Britain, Canada, Italy, Netherlands, New Zealand, Northern Ireland, Scotland, Sweden and United States. My objectives were as follows:

1. To identify common issues and problems.
2. To explore when, what and how patients would like to receive information.
3. To discover the barriers that prevents health care professionals from addressing reproductive and sexual health issues.
4. To assess how well these issues have been addressed and identify areas for improvement.

How Far Have We Come?

"…these issues are not routinely discussed by all health care teams."

Although there is a consensus that education and counseling on sexual health and reproductive issues should be an integral part of CF care, at the present time these issues are not routinely discussed by all health care teams. The implementation of multidisciplinary team approach does not seem to enhance reproductive sexual health education as it does for improving quality of physical care.

1. General Findings:

· There is still quite a knowledge gap in this area but there was evidence of improvement i.e. 25% of CF male knew of infertility in 1986 (Nolan et.al) vs. 90% in 1998 (Sawyer et. al)
· Parents have inadequate knowledge and should receive ongoing education from the time their child was diagnosed to the various stages of his/her growth and development.
· Females with CF are more likely to initiate discussion about their sexual health.
· Males with CF tend to rely on health care professionals to bring up the subject.
· Most people reported that they learn about fertility issues at 16 years of age or older.
· The significance of infertility seemed to increase with age. For example, a 16-year-old male may be more concerned about whether or not to get on a sport team than the possibility of not being able to father children. On the other hand, a young male adult in or establishing an intimate relationship with a partner would be more concerned about his infertility.
· Some males are still confusing infertility with impotence.
· Delay in establishing intimacy and relationships is partially related to delay in puberty, poor body image, low self esteem.
· Young people with CF are less likely to use contraception or practice protected sex.
· Number of pregnancies in women with CF has doubled between 1980 and 1990. Pregnancies were well tolerated in those with mild to moderate lung disease and when planned.
· Both males and females with CF lack adequate information regarding reproductive options to make an informed decision.
· People have a tendency to overestimate the probability of having a child with CF.
· When compared to healthy peers, married couples with CF demonstrate no significant difference in sexual satisfaction.
· Sexual satisfaction may be affected by severe debilitating lung disease but is not the main determining factor. Good lung function does not guarantee sexual satisfaction.

2. Patients' and Parents' Perspective:

· Adolescents and young adults all prefer to be informed at age 14.
· Many parents prefer sexual health information to be given when the children are older than 16 and other parents feel that it should be based on the level of maturity.
· Patients believe that it is the responsibility of the health care professionals to initiate the discussion.
· Most people prefer to have the information readdressed at various stages of their lives.
· All appreciate having the discussion accompanied by written material.

Male:
· Semen analysis should be offered to everyone.
· Some recalled feelings such as shock, bewilderment, sadness, indifference and
were "relieved" when first informed of their infertility.
· Mature males are interested in receiving detailed information about their
reproductive options and the specific treatments or procedures available.

Female:

· Women report frustration and anger over their reduced fertility and not having full control over the decision of becoming pregnant.
· Young females find it helpful to have small group discussion about sexual health issues with their peers and older, more experienced women with CF.

3. Barriers in providing adequate sexual health care:

· Most health care providers lack information and education regarding teaching and counseling for reproductive and sexual health issues.
· Lack of communication skills needed to deal with a sensitive subject.
· Insufficient time or difficulty in finding the 'right moment' for discussion.
· CF team tends to place a major focus on disease stabilization and adherence to therapy over other aspects of care.

Where Do We Go From Here?

Here are some suggestions you might want to consider:
· Choose the team member (i.e. doctor, nurse, social worker etc.) whom you are most comfortable with and take the initiative to bring up the topic for discussion.
· Ask questions about what you need to know, and/or request written material on the subject for future reference.
· When group discussion is not readily available, ask your physician or nurse to introduce you to someone who has had similar experience of the issue at hand to share his/her personal perspective with you by phone or in person (if no infection control issues).
· When in doubt, young men with CF should request sperm analysis to confirm fertility status.
· Genetic counseling and testing for the carrier status of your partner will increase your understanding about the actual probability of having a child with CF.
· Following the medical treatment recommended specifically for you, can help you to maintain good health and keep your daily symptoms at a minimum level.
· Maintaining a good nutritional status and participating in regular exercise often provides a healthier and more attractive appearance.
· If frequent bloating and excessive flatus is causing embarrassment while you are dating, try doing a 3-day food record and work with your dietitian to make sure that you are taking the appropriate amount of enzyme for your food intake. One or two tablespoons of mineral oil once a while to clear your bowel may be helpful as well.
· Yeast infections are quite common while on antibiotics. Make sure to let your physician know so treatment can be offered promptly to avoid discomfort and embarrassment.

"…openly communicate with one another."

Based on what we have learned so far, it seems to me that the best way to deal with the issues of sexuality and reproductive health is for health professionals and people living with CF to openly communicate with one another. By sharing knowledge and responsibilities, we can utilize the most updated information to discover creative ways to cope and to choose appropriate reproductive options.

Anna Tsang RN,NP,MSN
CNS/NP and Nurse Co-Ordinator
Adult CF Program
St Michael's Hospital
30 Bond Street, East
6th Floor, Room 6-037
Toronto
ONTARIO M5B 1W8
Canada