The Recognition Model: a new sexual health model of practice for use by disability teams
Lorna Couldrick
Senior Lecturer, School of Health Professions, University of Brighton
Way Ahead 2009;13(2):5-7
In a previous issue of Way Ahead, Lorna Couldrick presented a research study which explored the relationship between sexual expression, physical disability and professional practice.1 The research highlighted the reasons why sexual expression proves such a challenging area of practice for health and social care professionals. The following article proposes a new model of sexual health practice based on five key components.
Introduction
The National Institute for Clinical Excellence (NICE) has issued clinical guidelines2 recommending that health professionals in regular contact with people with MS should consider, in a systematic way, whether disability has impacted on their sexual function.
Every person (or couple) with MS should be asked sensitively about, or be given the opportunity to remark upon, any difficulties they may be having in establishing and/or maintaining wanted sexual and personal relationships; they should be offered information about locally available counselling and supportive services2.
What the guidelines do not clarify is who should be undertaking this task. Research involving three community physical disability teams revealed that sexual issues were not being addressed systematically in any of the teams.1
Relevant research findings
A primary finding of this study1 was that, although participants felt sexual health should be included, it was not routinely part of practice. The study highlighted several barriers to health professionals' communication about sexual issues, including:
- Lack of clarity about professional roles: whether aspects of sexuality should be part of their role or whether others in the team addressed it
- Concern to respect service users' privacy, and anxiety about causing offence. Most lacked the skills necessary to raise the subject without asking intrusive questions
- Examples of service users wanting information but their enquiries being unheard or ignored (the unsought enquiry)
- A minority of practitioners holding asexualising attitudes and holding to the belief that older people or those with severe incapacity would not have sexual desires
- Lack of awareness about the potential importance of sexual concerns to the service user
- Practitioners feeling vulnerable and unsupported in addressing sexual concerns by the team, their health Trust, or the professional body they belonged to.
Based on these findings a new sexual health model is proposed to enable teams to overcome obstacles associated with sexual expression amongst people with disabilities. The model clarifies professional roles, indicates how people with MS might be sensitively encouraged to talk about their concerns, and addresses the issue of unsought enquirers, asexual attitudes and lack of awareness.
The Recognition Model
The Recognition Model has five stages and is aimed at health and social care teams working with people with disabilities, including people with MS. The purpose of the model is to highlight how the team can protect, support and restore the sexual health of service users whilst allowing each practitioner to work within their own personal and professional boundaries. At its core is the recognition of the person with MS as a whole, with sexual needs like all others. It draws on existing skills within the team and depends on every team member (regardless of role) positively responding to direct or indirect questions, as well as affirming the relevance and priority service users may attach to sexual expression.
This model supports a team approach. It acknowledges that not every individual in the team may be willing or able to work at all stages. It allows open discussion to plan around the strengths and skills of team members to ensure sexual health is protected and supported consistently for all service users.
Stage 1. Recognition of the service user as a sexual being
The cornerstone of the model is recognising people with MS as fully human, with sexual needs like all others. This includes single people and those living alone, as well as people living with or away from partners. While a person may choose to express their sexuality through celibacy, it can never be assumed that an individual, however incapacitated, is asexual.
With this recognition, a positive approach to sexual health is possible. It requires skills of validation, normalisation and affirmation, acknowledging the importance the service user may attach to sexual expression. It also includes broader concerns such as appearance, social opportunity, and privacy. All disability professionals, regardless of role, should respond positively to questions raised by the service user. The following is an example of how positive recognition might be achieved:
This is an important question (validation). It is a concern several of my patients have raised in the past (normalisation). However I don't think I am the best person on the team to talk to (acknowledging limitations). The nurse in our team has much greater expertise than I do. Can I ask the nurse to contact you?
This approach affirms the individual's sexual identity without taking the practitioner outside of their professional boundary. Acceptance of the enquiry through the processes of validation, normalisation and affirmation, opens the door for further communication about the issue with other health professionals who may be better placed to explore the different levels of the enquiry. Recognition of the individual's sexual identity and acceptance of their enquiry is the crucial first step towards supporting and assisting the restoration of the individual's sexual health.
Stage 2. Provision of sensitive, permission giving strategies
This requires skills to invite disclosure whilst respecting an individual's right to privacy. Because sexuality is a private affair it is not always possible to know who has concerns. Therefore, all individuals should be given the opportunity to discuss establishing and maintaining wanted sexual relationships. Clear and direct permission is necessary but need not mean the use of intrusive questions. Techniques include indirect questions or statements. For example, as part of an initial screening assessment the following might be used:
If you do have any questions you wish to explore about your personal relationships or sexual expression, do let your key worker know. We have quite a lot of resources within the team and if we can't help we probably know someone who can.
Key worker, nursing and occupational therapy assessments all provide timely opportunities to raise the subject. Where the practitioner feels confident to move to the next stage of exploration the following could be said:
"I find some people also want to talk with me about their relationships or have questions about sex. I am happy to discuss these if you do have any concerns."
Where there are communication difficulties, it may be necessary for the speech and language therapist to raise the subject.
Dialogue is not the only option, permission can also be provided through printed service leaflets or posters in clinical areas. Where a team member, for any reason, is unable to provide permission, arrangements need to be made within the team to ensure every service user is given the opportunity to disclose sexual concerns if they wish to.
Stage 3. Exploration of the concern
This requires obtaining sufficient information to understand the impact of the disability on intimate relationships and sexual health. Sexuality has many facets, without exploration it is not possible to take appropriate action. The issues to be explored may be much broader than those related purely to the human sexual response cycle. It may be about social opportunity, self-identity, or moving a relationship towards intimacy; for example, how hoist use or a stoma can be managed during a sexual encounter. It could also be about role changes between sexual partners, or grief when one has to move into a separate bed. It may concern the management of fatigue, spasticity or pain. This stage of exploration could be managed by specific team members if not every one in the team feels able to do this.
Stage 4. Address issues that fit within the teams' expertise and boundaries
This requires analysing sexual problems, devising specific, targeted goals that are within the team's professional competencies. Physiotherapists might address biomechanical issues that cause discomfort during intercourse. The occupational therapist might help a couple to prioritise sexual activity as part of fatigue management, or provide information on simple electronic equipment such as a vibrator. The speech and language therapist might assist the aphasic patient to communicate sexual concerns with their partner. The psychologist may address emotional adjustment, including issues relating to body image and self-perception. A goal might be to provide condition specific sexual information such as the MS Trust publication, 'Sexuality and MS: A Guide for Women'.3 Goal setting should include access to any assistance available to the general population such as social opportunity, privacy, erotica and the use of sex workers.
Stage 5. Referring on when necessary
There will always be issues that fall outside the team's competence, and referral on, or provision of information about other services is necessary. This requires knowledge of resources available in the locality. Often quite simple issues may trigger referral, for example, referral back to the GP for a medical review or to the family planning clinic for contraceptive advice.
Where there are relationship issues and members of a couple are open to such interventions, it may be appropriate to refer people on to organisations such as Relate, a UK-based provider of relationship counselling and sex therapy.
The NICE guidelines for the management of multiple sclerosis in primary and secondary care state:
"Every person (or couple) with persisting sexual dysfunction should be offered the opportunity to see a specialist (with particular expertise in sexual problems associated with neurological disease) and offered, as appropriate, advice on lubricants and the use of sexual aids, and other advice to ameliorate their sexual dysfunction".2
Advocacy may be necessary where resources are unavailable or inaccessible. It may include offering disability expertise to generic services.
Conclusion
Sexual health is integral to positive concepts of self and quality of life. One couple, living with MS, described what sexuality meant for them by saying:
"It is not just erectile dysfunction. It is life giving and life affirming. In our relationship, it has been about having children but much more besides. For us it has meant affirmation, reconciliation, celebration and healing."4
Sexual expression carries a lot of meaning for people whether they are living with a disability or not. Sexual health should therefore be included within holistic health and social care for people living with MS. The Recognition Model of sexual health is a more practical approach to achieving what is set out in the national guidelines. It highlights how existing skills can be used to protect, support or restore the sexual health of people living with MS. The model clarifies the responsibilities of individual practitioners as well as the combined professional practice of the team. It is hoped that the model will be used to move teams of health professionals forward in this complex area of practice.
References
- Couldrick L.
Sexual expression, physical disability and professional practice.
Way Ahead 2008;12(4):10-11
Read online - National Institute of Clinical Excellence.
Multiple sclerosis: management of multiple sclerosis in primary and secondary care.
NICE Clinical Guideline 8. London: NICE; 2003. - Ward-Abel N.
Sexuality & MS: A guide for women.
Letchworth Garden City: Multiple Sclerosis Trust; 2007.
Read, order or download - Golding J, Golding E.
Personal observations on sexuality of people with MS. European MS Platform Congress (conference proceedings) .
Oslo: European Multiple Sclerosis Platform; 2001
Join the Way Ahead mailing list
(UK addresses only)
Disclaimer
Way Ahead articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.
