Sexual expression, physical disability and professional practice
Lorna Couldrick, Senior Lecturer
School of Health Professions, University of Brighton
Way Ahead 2008;12(4):10-11
Background
The diffidence displayed by health professionals in addressing service users' sexual issues as part of holistic care has been reported in nursing, occupational therapy and disability literature1-3. A theory/practice divide has been identified: that is, while health professionals may feel that sexual expression should be included as part of their role, they often do not feel confident or competent enough to practice in this area2. The issues at the heart of this theory/practice divide were explored in an extensive study into the relationship between sexual expression, physical disability and professional practice.
The study design was developed following consultation with several voluntary organisations including the MS Trust and a number of individuals living with a disability. Their feedback indicated that sexual expression for people with disabilities was closely aligned to self esteem and quality of life. Despite it being a high priority concern for many people there was no clear avenue for advice and support when disability impacted on sexual expression and intimacy. Many individuals reported that sexual expression was simply "not on the health or social care agenda".
In seeking the views of people whose sexual expression was affected by their condition, it became evident that while information on strategies, medication and equipment was helpful, it was the wider emotional aspects of sexual expression that were more important. For example, they suggested support would be helpful in finding social opportunities to establish relationships or in emotionally adjusting to sexual changes caused by the disability. Issues were highlighted around the timing of help, working with the couple, or removing barriers to mainstream counselling and sexual health services.
Based on findings from this collaboration, the study focused on care that is provided in the community rather than the hospital setting, and as part of a multidisciplinary team as opposed to a single profession.
Focus of the investigation
A qualitative approach was used to explore the professional practice of community disability teams toward the sexual health of service users where disability had an impact upon intimacy and sexual expression.
Method
Following ethical approval from NHS Local Research Ethics Committees, three multidisciplinary community teams were recruited. These teams worked with people experiencing a range of disabilities and living at home. Thirty professionals volunteered including: 10 occupational therapists, 7 physiotherapists, 4 nurses, 4 speech and language therapists, 3 psychologists, and 2 support staff. Data was collected through focus groups and in-depth interviews were conducted separately within each team.
Core findings
A theory/practice divide was evident. With the exception of one participant, all professionals believed the service their team provided should support and assist the restoration of the sexual health of their service users. In practice however, no team routinely ensured all service users had the opportunity to discuss their sexual concerns. Barriers included:
- Lack of clarity about professional roles. Many practitioners were not sure whether aspects of sexual expression should be part of their role or whether it was included in the roles of other team members.
- Sexual expression was seen as a more complex and difficult area of practice than other activities of daily living.
- Social and personal values discouraged professionals from addressing sexual expression in practice.
Factors making it such a difficult area of practice
The individuals' beliefs, attitudes and values around sexual expression, obtained through a process of enculturation, prior to any professional education were significant factors. Social rules of privacy and the lack of a common acceptable language about sex made it difficult for professionals to introduce and discuss sexual concerns. Talking about sex also carried the risk of censure, or the risk of exposing peoples' different, and possibly conflicting moral values. A few practitioners did hold asexualizing attitudes.
Professional education neither explored nor challenged these values and norms. Only two professionals (a psychologist and an occupational therapist) felt they had qualified with a sense that issues concerning sexual expression fell within their professional role. For others, sexual expression was either absent from training or delivered in a single encapsulated tutorial, separated from the core curriculum, and delivered by specialists. Where greater confidence was acquired, it was associated with increased awareness of the perspective of disabled people.
The affective component triggered by actual practice, or from imagining what might occur, was possibly the strongest deterrent to approaching the issue of sexual expression. Strong negative feelings included embarrassment, fear, hostility, and danger. These negative emotions were sometimes managed by projection, avoidance or holding to consonant beliefs (believing sexual expression is a low priority for service users) over dissonant beliefs.
Professional practice revealed examples of service users wanting sexual information but these enquiries being unheard or ignored. There were a few examples of good practice. One psychologist felt more confident and identified sexual expression as part of her role, although she was ultimately dependent on other team members making appropriate referrals to her. In another team, three members (a physiotherapist, occupational therapist and a speech and language therapist) were raising the subject more frequently. However the majority of practitioners had only their personal experience to guide them and did not have skills to raise the subjective sensitively. Sexual expression was not described as a core part of the role of any single profession. Some health professionals appeared to be influenced by a medical approach, whereby sexual expression was reduced to a non-essential activity.
Teamwork and the wider context - The structure of the team and the interrelationship between its different members influenced the service that was offered with respect to sexual expression. The service was also influenced by the context of practice, for instance some health professionals felt addressing the issue was more of a challenge for people with progressive conditions; community work was thought to carry higher risk, and working with couples was seen to make the task more complex. A number of health professionals felt that the NHS and Primary Care Trusts would not support a role in sexual expression - inferring a culture of asexualisation within the health service.
Limitations
The results of this study are contextually specific and cannot be generalised to all services offered by multidisciplinary community teams.
Conclusion
The qualitative approach taken in this study has furthered our understanding of the reasons why sexual expression proves such a challenging area of practice. Professional education and the organisational structures of health and social care all influence professional practice. Unwittingly, practitioners' lack of competence may contribute to the suppression of sexuality in people who have disabling conditions. This research supports the need for change within the healthcare system. Such change needs to encourage recognition of the sexual needs and desires of people with disabilities and provision of support for sexual health through committed and competent community teams.
In the next issue of Way Ahead, Lorna Couldrick presents her recommendations for a new model of intervention. Based on the findings of the present research study, 'A proposed sexual health practice model for disability teams' outlines five-steps that might help health professionals move forward in this complex area of practice.
References
- Couldrick L.
Sexual issues within occupational therapy, part 1: Attitudes & practice.
Brit J Occu Ther 1998; 6 (12): 538-542 - Earle S.
Disability, facilitated sex and the role of the nurse.
J Adv Nurs 2001; 36 (3): 433-440 - Shakespeare T, Gillespie-Sells K, Davies D.
The sexual politics of disability.
London: Cassell; 1996.
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