E-24 Sexual dysfunction

Two of Maslow’s five areas of need that motivate behaviour concern sexual functioning. Sexual release is one of three basic (physiological) needs, the other two being hunger and thirst, and being in an intimate relationship is a significant part of affiliation, having close relationships with other people. Moreover, for many people, it also contributes to esteem, both self-esteem and being respected by other people. It is no surprise that the quality of sexual function affects a person’s quality of life. Conversely, it should be no surprise that helping someone whose sexual function has been affected by illness must consider much more than the purely mechanical, physiological aspects of sexual function. Achieving orgasm is not a critical outcome; it may not even be a necessary outcome. As Chandler and Brown wrote in 1998, “The dyadic relationship is an important institution in the management of disability. Sexual dysfunction can be predictive of difficulties within a relationship. Any service designed to address sexual health should also address relationship issues.”

This page discusses the role of rehabilitation and the expertise an expert in rehabilitation may need. Its main message is that, just as the rehabilitation of people with spasticity needs to take a broad, holistic view rather than focusing on minimising spasticity, the management of sexuality must be holistic, focusing on intimate interpersonal relationships rather than sexual performance.

The competency

The competency is that the rehabilitation expert is “Able to ask about, diagnose, and suggest management strategies for sexual dysfunction and disturbance in intimate personal relationships associated with disability.” This applies to all branches of rehabilitation, not simply neurological rehabilitation. A document with indicative behaviours, knowledge and skills associated with this competency and some references.

Sexual dysfunction - introduction

Rehabilitation prides itself on being holistic and person-centred. Sexual function is a matter of great importance to most people. Yet Margaret McGrath and her colleagues found in a recent systematic review that only 15% of healthcare professionals reported they regularly ask patients about their sexuality.

Four main themes emerged from the qualitative studies reviewed:

Sexuality is silent and invisible, being considered taboo or too private to discuss;
Sexuality is not given priority, being considered a “luxury add-on” in healthcare and, if addressed, being evaluated within a medical model focussing on mechanical issues only (i.e. erectile dysfunction and a lack of female arousal)
Lack of ownership and responsibility, passing responsibility to someone else, such as “the team” or an external expert);
Sexuality is a topic to be avoided, with people passing to the patient the responsibility for initiating any discussion.

The quantitative studies reviewed in the paper highlighted the predominance of a medical model. Only nine of the 65 quantitative articles examined the help or support offered. The usual interventions provided information or education covering:

The effects of the person’s condition on sexuality
The effects of any medical treatment (medication) on sexuality
Any questions asked by the person.

Only two quantitative studies described broader interventions, such as helping with self-esteem. The recommendation by Barbara Chandler and S Brown has not influenced rehabilitation much.

Last, sexual function is associated with quality of life; for example, Kathryn Flynn and her colleagues found this in a survey of 3515 people in the US. This is unsurprising, given that sexual function is closely related to three of the five areas of need that motivate people and the amount that these needs are satisfied is associated with subjective well-being.

A framework for sexuality rehabilitation.

Stacey Elliott and her colleagues suggested a framework to facilitate multi-professional team rehabilitation for sexuality issues. It covers eight main areas:

Sexual drive or interest.
This starts with libido but extends to recognising the association with close personal relationships and satisfying cultural expectations.
Sexual function.
This concerns the physiological aspects of sexuality, the usual focus of medical management, such as erectile function, vaginal lubrication, and achieving orgasm.
Fertility and contraception.
Many people are concerned about their ability to have children or, conversely, the need to avoid having children. This area of interest will also cover the consequences of pregnancy for women and parenting.
Factors associated with the condition.
People are naturally worried about the effects of sexual activity on their condition, the effects of drugs taken on sexual function, and associated condition-specific matters.
Motor and sensory functions.
Practical matters arising from changes in the ability to move or feel will be relevant in many disabling conditions and must be considered. It may affect the activities associated with sexual activity, such as getting undressed or washing, and activities that are directly sexual, such as touching the other person or achieving penetrative intercourse.
Bowel and bladder issues.
Sexual dysfunction is often associated with alterations in control over the bowels and bladder, and this may be an overwhelming worry.
Sexual self-view and self-esteem.
Concerns about sexual attractiveness, the ability to satisfy a partner, and many other aspects of sexuality afflict most people; they are more significant in people who are ill and have some disabilities.
Partnership issues.
Although much sexual activity can be solitary, it is usually with another person or, at times, with several other people.

These eight headings offer a way to be sure of covering the most critical matters.

Implementing sexuality rehabilitation.

How can rehabilitation teams, and thus individual professionals, ensure they address patients’ sexual needs?

Olivia Barrett and her colleagues asked 16 healthcare professionals (14 women) what obstacles impeded rehabilitation. The qualitative study identified five themes.

First, respondents felt sexual matters must be integrated into routine rehabilitation practice so that it became normalised, not an add-on. They felt a standardised assessment would help, treating sexuality like all other functions, such as dressing.

Second, they felt the team needed to have the necessary knowledge and skills. Initially, people felt sexual function was a specialist subject, but they agreed that all team members should have some expertise rather than outsourcing the topic. The collaborative approach would allow different professions to resolve various problems.

Most respondents acknowledged sexuality was an awkward topic, embarrassing and with personal uncertainty about cultural attitudes. There was additional concern about documenting and sharing information as other information about dressing or continence was shared.

Fourth, professionals accepted that they needed to be more approachable. The absence of routine questions or discussion about sexual function made it challenging for a patient to raise the issue.

Last, the professionals recognised that the sexual partner was often overlooked and rarely included in the discussions that occurred.

In a paper, Sexual and Physical Disability: Exploring the Barrier and Solutions in Healthcare, Tinashe Dune reviews three models. The PLISSIT model focuses on sexual performance and a medical approach; the Kaplan model focuses on the chief complaint and risks overlooking other factors; and the ALLOW model.

The ALLOW model:

Asks about sexual activity
Legitimises the person’s concerns
recognises Limitations arising from ignorance and discomfort
allows Open discussion
Works collectively with team members, the person, and their partner.

The acronym is a bit clumsy, but it emphasises the importance of initiating discussion about sexuality and involving the team, person, and partner.

Louis-Pierre Auger and colleagues evaluated a Sexuality Interview Guide used with a group of patients in the stroke rehabilitation service. It focuses on the initial steps. It is a semi-structured interview with four stages:

Asking for permission to discuss sexuality
Normalising the existence of sexual problems in illness
Suggesting areas of concern that the person may have
Asking whether the person would like further input about any sexual concerns

The main messages arising from research are that sexual function and sexual relationships:

Must be asked about, preferably as an integral part of an early assessment
Should be normalised, stressing they are expected and avoiding any judgemental comments
Should be considered and managed by all team members, not passed on to another service

Broader considerations.

Sexual function and partner relationships may be affected by any condition. For example, they arise after amputation, as Jesse Verschuren and colleagues discussed, rheumatoid arthritis and multiple sclerosis. Considering sexuality must be an integral part of any significant rehabilitation assessment and formulation.

The issues raised when discussing sexuality must be considered holistically within a biopsychosocial model of illness and cannot be viewed simply as a matter of disturbed sexual physiology. The factors influencing sexual functioning extend across all domains, and conversely, the effects of sexual dysfunction influence all areas of a person’s life.

Therefore, as with every other challenge faced by a rehabilitation service, the focus should be on higher-level matters rather than on the specific areas of sexual performance.

Conclusions.

This page focused primarily on initiating and taking forward discussion about sexuality. We have slowly become better at discussing some previously challenging matters, such as the person’s diagnosis (it used to be difficult to say multiple sclerosis to a patient) or the likelihood of disease progression. We still have difficulty in discussing other issues such as dying, stopping treatments (even if they are harmful), sexual dysfunction, and intimate personal relationships. Consequently, most of this page has considered how, when, and by whom the issues of sexual dysfunction and partner relationships should be raised with the person. I have assumed that rehabilitation should always consider sexuality just as it considers all other parts of a person’s life. I have not discussed the details of sexuality, such as pharmacological or other medical treatments, nor have I highlighted the crucial importance of emotional disorders as both a cause and a consequence of sexual dysfunction.