Sexual History Taking: A Dying Skill?

Introduction

Adolescents are having sex. The United Kingdom (UK) has the highest teenage birth and abortion rates in Western Europe. ¹ The second National Survey of Sexual Attitudes and Lifestyles, which included more than 11,000 men and women aged 16 to 44 years, found that nearly one-third of men and one-quarter of women in the UK had heterosexual intercourse before the age of 16. ² Young people aged younger than 25 years experience the highest rates of sexually transmitted diseases (STDs) in the UK. ³

Sexual history taking provides an opportunity for reproductive, contraceptive, and STD counselling. Health care professionals can screen for high-risk sexual behavior and sexual problems, and provide information and support. Adolescents value guidance about their sexual health. The majority of adolescents when asked, believed it important to discuss sexual intercourse, contraception, pregnancy, unwanted sexual activity, and sexually transmitted diseases with a health care professional ⁴ ; however, clinicians are less likely to take a sexual history from adolescents than adults. ⁵ A U.S. study found that professionals feared that adolescents disclosing sexual activity would raise issues of confidentiality and parental involvement and knowledge. ⁶

Many adolescents with life-limiting illnesses, which by definition shorten their lives, ⁷ are living well into adulthood. This population often have associated physical disability, and are often as sexually curious and/or experienced as healthy adolescents of a similar age. They may however be misinformed about general sexual knowledge, have misconceptions about sexuality, ⁸ or may be participating in activities without adequate knowledge and skills to keep them healthy, safe, and satisfied. ⁹ Adolescents with life-limiting illnesses may experience sexual problems due to direct effects of their disease or its treatment. They may suffer from fatigue, anxiety or depression, altered body image, and loss of self-esteem, and they need the opportunity for education and discussion.

Although the issue of sexuality in patients with a life-limiting illness is integral to their health and well-being, ¹⁰ this subject is generally underexplored and underassessed by health care professionals, and understudied by researchers. ¹¹ Reported studies generally involve adult patients, with little written about the sexuality of life-limited adolescents. Therefore, the aim of this study was to explore the practice of sexual history taking during consultations between adolescents with life-limiting illnesses and pediatricians.

Methods

The clinical medical notes of children aged 12 to 18 years known to a community team looking after patients with nonmalignant, life-limiting illnesses were selected at random. The medical records of 25 adolescents were retrospectively reviewed by two researchers. Handwritten documentation and typed letters were reviewed from the first time the young person over the age of 12 years was seen until the last consultation. Age, sex, number of appointments, clinician seen at each appointment, and whether a sexual history was taken were recorded. Sexual history taking was defined as any documented reference to a sexual partner, sexual activity, STDs, or contraception. The study was approved by the local audit committee.

Results

The study group consisted of 13 boys and 12 girls. The young people were seen between the ages of 12 years, 0 months and 18 years, 1 month. The young people had a range of diagnoses including neurological disorders, severe cerebral palsy, and metabolic and genetic disorders.

The 25 young people were seen on a total of 162 occasions. The average number of appointments was 6.5 and the range was 1 to 23 visits. The majority of appointments were with pediatric consultants.

On no occasion was a sexual history documented in the clinical records (see Table 1).

Incidentally, one of the adolescents in the study group was noted to have become pregnant at age 16 years. There was no documentation of sexual history taking in her pediatric medical records.

Discussion

The philosophy of palliative care is to provide holistic care encompassing physical, spiritual, Social, and psychological dimensions. Recognizing the sexual health needs of palliative care patients and initiating sexual history taking has often been neglected. ¹² Patients themselves are unlikely to initiate discussions about sexual health, therefore it is important for health care professionals to take the lead. ¹³ Consultations tend to be confined to the genetic implications of starting a family, and often, wider discussions around relationships, contraception, and sexually transmitted diseases are overlooked. Every time an adolescent is seen in the clinic and sexual history is not discussed is a missed opportunity for sexual education and counselling. This was evident within our study, whereby a 16-year-old girl with an autosomal recessive condition causing progressive damage to the nervous system became pregnant during the study period.

Discussions should begin at an early age. Some young people with life-limiting illnesses, learning difficulties, and disabilities may be vulnerable to abuse or harm. They are more likely to experience forced sex, and having conversations to help them understand acceptable and appropriate behavior is important to support them with their personal safety. ¹⁴

A study by Korzeniewska and colleagues ¹⁵ in Poland looked at the sexual and reproductive health knowledge of girls with cystic fibrosis and their parents. They found significant knowledge gaps regarding fertility issues in both patients and parents. Seventy-five percent of the patients and 40% of their parents felt that sexual health discussions should begin between age 12 and 14 years. Rahbek and co-workers ¹⁶ writing about patients with Duchenne muscular dystrophy (DMD) highlighted the importance of professionals, in particular pediatricians, recognizing the need for social competencies for adult life.

Although young people with life-limiting illnesses may welcome the opportunity to discuss their sexual health, there are often barriers to such discussions. Health professionals may perceive sex as a taboo subject, and studies from adult literature acknowledge that although it is the responsibility of health professionals to discuss sexual health while providing holistic care, it is often difficult to do so. ¹⁷ Embarrassment, underestimation of patient risk, feeling ill-prepared, belief that the sexual history is not relevant to the chief complaint, and time constraints are cited as reasons preventing health care professionals from conducting this assessment.^18–21 Others find it difficult to regard patients with life-limiting illnesses as people with sexual and intimate needs, ²² and patients report being disappointed by the lack of information, support, and practical strategies provided by health professionals. ²³ Merrill et al. report ²⁴ medical curricula focusing on the “clinical” aspects of sexual health and “medicalizing” discussions, with far less emphasis on intimacy and attitudes to sexual health.

Pediatricians should be able to initiate sexual histories with young people and they may use innovative ways to start discussions. Van der Stege and colleagues ²⁵ has evaluated the feasibility and appreciation of a board game (SeCZ TaLK), which stimulates communication on sexuality and intimate relationships in young people with chronic conditions. Eighty-five adolescents and 12 health care professionals and teachers, who acted as facilitators, piloted the game in schools, an outpatient clinic, and patient organizations. Eighty-five percent of adolescents thought that it was important or very important to have discussions on sexuality and 81% felt that SeCZ TaLK enabled this, girls being more positive about the game than boys (p<0.05). Those attending outpatient clinics appreciated the game most (p<0.05). In addition, Michaud and co-workers ²⁶ found that youth participation in role-play enabled a more targeted and sensitive sexual history.

Conclusion

Professionals should take a sexual history from young people with life-limiting conditions and support them as they develop their sexual identity. Together for Short Lives (Association for Children's Palliative Care) has published guidance for professionals working with such young people which builds on the principles that all young people with life-limiting/life-threatening conditions have the right to receive information and support to develop their self-esteem, a positive body image, and self-confidence in relation to their sexuality and relationships. ²⁷

It is the responsibility of clinical departments to train their staff in sexual history taking, to enable them to initiate the topic while avoiding closed questions and being nonjudgmental. Health professionals should include sexual health in routine palliative assessments so that every adolescent is given an opportunity to be heard.

Areas for further study could include exploring what those with life-limiting illness want to know about sex, and thus finding the best ways of delivering sexual information and teaching/training health care professionals.

Sexuality is intrinsic to a person's sense of self, and can be a vital form of communication that helps to relieve suffering and maintain interpersonal connection in the face of life-limiting illness. ²²