Lorna Couldrick MSc, DipCOT, CertEd, MBACP (SnrAccred) has developed a new model to replace PLISSIT for helping professionals and disabled people feel more comfortable about discussing sexual problems. Her model was launched at the SHADA conference in November. See Couldrick L, Sadlo G, Cross V (2010) Proposing a new sexual health model of practice for use by physical disability teams: The Recognition Model. International Journal of Therapy and Rehabilitation 17 (6) 290-299
AUTHOR: Lorna Couldrick
THESIS TITLE: Sexual expression, physical disability and professional practice
The asexualisation of disabled people was first documented in the 1970′s. This prompted an international drive to improve the education of health and social care practitioners working with disabled people, to ensure inclusion of sexual expression within rehabilitation and care. Yet research within some professions indicated practitioners lacked competence and confidence and little progress was apparent.
Increasingly health and social care are delivered through multidisciplinary teams. Uniquely, this research investigated the professional practice of three community disability teams toward the sexual health of their service users when disability impacts on intimate relationships and sexual expression. The study was developed in collaboration with disability organisations and disabled people. It was conducted within a contemporary, critical theory paradigm using focus groups and interviews. The teams, all based in south-east England, provided services for physically disabled people (including some with multiple sclerosis) who lived in the community. Thirty practitioners participated, (10 occupational therapists, 7 physiotherapists, 4 nurses, 4 speech and language therapists, 3 psychologists, and 2 support staff).
Findings indicated that sexual expression was a very uncertain area. There was a theory practice divide. All but one participant said sexual expression should be within their team’s remit, yet it was either not addressed or very difficult to address in practice. Professional roles were ambiguous: none of the five professions consistently included, or excluded, sexual expression from its remit. The psychodynamic processes that deterred practice were explored. Themes, developed from in-vivo coding, were organised into five subsets: enculturation of the individual prior to training; professional socialisation; the affective component; professional practice; team working & the wider context. This new understanding reveals why simplistic changes to education are insufficient. Recommendations have been made that reach beyond the team to the NHS, professional bodies and health care education. Given such uncertainty, community disability teams need to take responsibility to ensure holistic practice, encompassing sexual needs, is offered to all service users. A new practice model to support them, appropriate to all disciplines, has been proposed.
Thesis summary: Sexual expression, physical
disability & professional practice
THE RESEARCH RECAPITULATED
‘Policy and provision around disability often neglect to consider sexuality as one of the basic human needs. While housing, transport, education, and other needs are dealt with, albeit inadequately, consideration of social and sexual factors is not high on the welfare agenda. … This failure to prioritise matters which are highly significant to most adults, including most disabled adults, reflects a failure to consider disabled people as fully human. Just like elderly people, disabled people are not seen as having sexual needs, and provision consequently neglects this’ (Shakespeare, Gillespie-Sells et al. 1996 p87).
For the last thirty years, many authors have argued for change. In their book ‘The Sexual Politics of Disability’, the authors included amongst the barriers to change -’Government policies, professional ways of working, media representations and public attitudes’ (Shakespeare, Gillespie-Sells et al. 1996 p182). The research, presented here, investigated professional ways of working, looking particularly for tacit, often unconscious perspectives, in relation to the sexual expression of service users. The professionals concerned were health and social care personnel, working in teams, who provided interventions for people with physical disabilities living in the community: professionals considered to have expertise in disability. The findings have led me to reflect whether the care provided by some disability teams may unwittingly undermine the sexual health of disabled people and contribute to their sexual disenfranchisement.
This study is not about the sexual problems of disabled people1 but rather the difficulty disability professionals have in encompassing sexual expression within holistic practice. Increasingly, as the research progressed, I began to recognise that I did not hold a neutral place within it. I moved from seeking to elucidate professional practice to a contemporary critical theory paradigm which is concerned with issues of power, oppression and social justice. My research question became: why is sexual expression of disabled people either not addressed, or so difficult to address in practice? What has emerged is that practice is frequently underpinned by largely unrecognised beliefs and values around, particularly sex, and disability too. These pervade professional education, practice and service delivery. Identifying this has enabled new levels of understanding of these difficulties.
The research was conducted in two phases. During phase 1, the preliminary inquiry, I approached several disability groups and, through some of them, I made contact with a small number of disabled people. This was never intended to be a statistically representative sample but a determined pursuit of service user collaboration. The intention was to gain insights, from disabled peoples’ perspective, to enhance the research. In phase 2, the main study, I investigated the professional practice of three disability teams (four with the pilot study). This I did through focus groups and depth interviews, working with each team consecutively over a period of two years. These strategies were chosen to explore the taken-for-granted world of professional practice as well as the potentially defended beliefs
1 In no way do I wish to imply physical disability is synonymous with sexual problems. Indeed some disabled authors indicate a richness and diversity of sexual expression, borne out of the necessity for good communication and creative problem solving, that many non-disabled people may not achieve (Shakespeare 2000; Shakespeare, Gillespie-Sells et al. 1996).and values of individuals underpinning practice. Serendipitous data was also included. Electronic discussions occurred on the Model of Human Occupation (MoHO) and the Multiple Sclerosis Trust web sites. These provided directly relevant information about expectations, understandings and beliefs concerning disability professionals’ roles in supporting the sexual health of service users. The findings were presented both through a narrative account of each team’s practice and thematic coding.
Core findings indicated that: – Sexual expression was a very uncertain area It was not consistently addressed by any team investigated There was a theory practice divide Professional roles were unclear and ambiguous There were multiple deterrents to addressing sexual expression in practice
With one exception, participants all said the service their team provided should support, and assist the restoration of, the sexual health for their service users. In reality, there were multiple deterrents to practice. An opportunity (permission) was not provided for every service user in any team to discuss their sexual concerns. Even without explicit permission, all teams had examples of clients introducing the topic. Some staff had no skills to manage these disclosures in a sexually affirming way and avoided the subject. Others managed as best they could by drawing on personal experience.
Of the five professions represented (occupational therapy, physiotherapy, nursing, speech & language therapy and psychology), not one consistently included, or excluded, sexual expression from its remit. Nursing was considered in two teams to have most affinity with this aspect of practice, although no nurses expressed any expertise. In the third team, which had no nurses, occupational therapy was indicated. Because of the multifarious nature of sexual expression, each of the professions had positive skills to contribute. That is sexual expression was seen to span all professional roles. However the reality was that a majority of participants were either unaware or avoided involvement in sexual aspects of intervention.
The theory practice divide and ambiguity of roles has been cited in profession specific studies but this is the first research to investigate the practice of community disability teams. In single profession studies, it could be assumed the task is being undertaken elsewhere in the service. Here the research reveals service provision. In two teams, virtually nothing was being done in this aspect of care. Although more was offered in the third team, it was not consistent for all service users. Importantly, unlike any other study, this research has provided in depth explanation of these findings. It is in revealing the multiple deterrents to practice that the lack of awareness; oversight and diffidence of practitioners can be understood.
Why it is such a difficult area of practice
Significant findings were the individual’s beliefs, attitudes and values around sexual expression, obtained through a process of enculturation, prior to any professional education. Social rules and norms had been acquired, for example of not directly talking to other people about personal sexual behaviour. This respects privacy. Talking about sex also carried a risk of censure, or the risk of exposing other people’s different, and possibly conflicting, moral values. A further barrier to talking openly and easily was the lack of a common acceptable language. Additionally, some participants held asexualising attitudes toward older and disabled people.
For many participants there was no pre or post-registration education on sexual expression, therefore these personal values and norms were neither explored nor challenged. Only one person, a psychologist, described what she felt was adequate education in this area. She and an occupational therapist were the only participants to qualify with a sense that sexual expression was within their role. So, despite the espoused role for the team, no profession in this research had acquired a role in sexual expression from their professional socialisation. For most, there was either no mention of sexual expression within their course: or they received a single encapsulated tutorial, separated from the core curriculum, and delivered by specialists. Practitioners and tutors never modelled how discussing sexual issues could be done in a way that respected privacy. One participant described tutors imparting an asexual approach to practice. Other studies have noted that nurses, physiotherapists, psychologists and occupational therapists have felt ill equipped to address clients’ sexual concerns but this research is the first that has provided some description of the actual education received by disability professionals.
However, the findings indicated that it was not just deficiency of training that deterred practice. Albeit brief, two teams had initiated a learning opportunity, but this did not overcome the anxieties of practice. Participants were unable to build on learning through observing applied practice or through supervision. One person dismissed a course as not being officially recognised. Another participant described her resistance to training. No relevant post-registration multidisciplinary education modules were available. Yet, it was noted that training courses would be developed if sexual expression were an established part of the service. In the few examples given, where greater confidence was acquired, it was associated with the observation of a practitioner or increased awareness of the issues from the perspective of disabled people.
The emotional response, the affective component, triggered both by actual practice or from imagining what might occur, was possibly the strongest deterrent to practice. Other studies have highlighted discomfort but this is the first, to hear in the words of practitioners speaking about their actual practice, what discomfort means. It included strong negative feelings like embarrassment, fear, hostility, anger and danger. The thought of raising the subject provoked anxiety and fear. Participants
feared raising clients’ expectations, then failing them. They feared damaging the situation. Damage could be to their therapeutic relationship with the service user, or between the client and their partner, or to the relationships within the team. Some participants conceived addressing sexual expression as dangerous. Identified risks included litigation, personal safety and potentially perversely motivated service users. Sexual expression was seen as more anxiety provoking than other areas of practice. This research has revealed how these strong negative feelings were sometimes managed. One strategy was to project negative feelings onto others. Another way, demonstrated in the data, was to avoid sexual expression, either consciously or unconsciously. Or consonant beliefs (supporting non-involvement) overrode dissonant beliefs; for example, that sexual expression is a low priority for service users.
This research has revealed that, for several practitioners, sexual expression had been an unseen, hidden area of practice. In part, this was attributed to the social norm of privacy, but it was also about the absence more generally of sexual expression from professional practice. There were examples of unsought inquiries being avoided or ignored. Mostly practitioners only had personal experience to guide them and did not have skills to raise the subject sensitively, in a way that respected privacy. Some wanted the client’s permission to cross the social boundary of privacy. No single profession included sexual expression as part of its core role. In practice, it spanned different professionals’ expertise. Some saw occupational therapy as the most appropriate profession, yet a leading theorist has rejected such a role. In the Multiple Sclerosis Trust e-discussion it was stated that the specialist multiple sclerosis nurse and the incontinence nurse had specific expertise around sexual issues but this does not accord with the findings here. Indeed the incontinence nurse refuted the team should raise the subject with service users. Additionally, participants attributed specialness to sexual expression making it more complex or sensitive than other aspects of healthcare. Exploration of participants’ clinical reasoning indicated that for some sexual expression was a low priority for intervention. This was influenced by a medical model approach, which reduced sexual expression to a non-essential activity: an optional extra.
Researching community disability teams highlighted some deterrents associated with team work and the wider context. The first is the importance of team construction to the task of addressing sexual expression. Although some participants indicated that nurses should take the lead, in no team were nurses seeing all the service users. Similarly, the task was not seen to fit well with the initial assessment and the key worker role. Secondly, aspects of the service user group made intervention around sexual expression more difficult when compared to other groups. For example they were not young men (who are seen as more overtly sexual) but of all ages and of both genders. Progressive disorders also were seen to make raising the subject much more sensitive. Some cited working in the community as potentially more difficult. Additionally service users did not present with challenging sexual behaviour, therefore team members were not compelled to address sexual expression. Also
some practitioners lacked skills and were anxious about working with the couple. Thirdly, this research is the first to identify the impact of the organisation. Some participants believed the NHS or primary care trust would not sanction a role in sexual expression, this was seen in the lack of policies, resources or supervision to support this aspect of care. Finally, the findings provided some evidence of an institutional culture of asexualisation within the health service.
Is there a problem requiring change?
Sexual expression has been identified as an important contributor to health and quality of life (World Health Organization 2001). This includes the wellbeing derived from a positive sexual identity as well as the capacity to express sexuality and to build intimate and sexual relationships, in all their diversity. If this is so, how can health care then exclude sexual expression? This seems in marked contrast to the aims of holistic rehabilitation, which includes improving function, enabling participation and enhancing quality of life. With few notable exceptions, most participants in this research lacked awareness or proficiency, to support the sexual expression of service users. In the preliminary inquiry sexual expression was seen as a neglected area of health and social care.
Sexual health provision is available elsewhere in the health service so some may suggest it is not needed within community disability services. However, disabled people appear to have less information or support available to them when disability impacts on sexual expression. Findings here indicated that sexual health services had less expertise in disability than the community disability teams. Also disabled people may need positive recognition of their sexuality before they are confident to access mainstream services.
Sexual health requires a positive and respectful approach. ‘For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled’ (Medical Foundation for AIDS & Sexual Health 2005 p27). However, disabled people, rather than respect, sometimes feel disenfranchised by a society which regards them as asexual. I am certain no participant in this study consciously regarded disabled people as asexual. Yet, there were examples of practitioners disregarding the sexual needs of older or severely physically impaired people. Denial of the importance of sexual expression and avoidance of matters sexual, were also seen. Additionally there were indications of asexualisation within health care provision and education. It is possible this is how all health care is delivered: that is, it is no different for all health care users. That is beyond the scope of this research. What is important is that the very structure of health and social care provision should not contribute to the oppression of disabled people by denying them a sexual identity and thereby full citizenship.
Recommendations to achieve change
Essentially, for change to occur, the disabled person must be regarded as fully human, with sexual needs like all others. A sexually affirming approach is necessary at every level of health and social care planning and delivery. This includes when service users are receiving treatment or intervention through a community physical disability team.
Within a community physical disability team, this entails enabling service users to disclose and explore their sexual and intimacy concerns. Issues that fall properly within the professional domain of the teams can then be addressed. Otherwise sign-posting and referral is required. This research has revealed the present uncertainty and the lack of clarity about professional roles as well as the many deterrents to practice. Thus, I have proposed that community disability teams (rather than a single profession or individual) take responsibility for ensuring holistic practice, encompassing sexual needs, is offered to all service users. To do this it is necessary to consider the skill mix and construction of the team. Also, because of the social norms around privacy, systems need to be in place to provide every service user with the opportunity, should they wish to discuss these concerns. Procedures may vary but they need to be systematic, overt and encompass all the tasks. I believe such an approach would reduce the damaging stigmatisation of asexualisation, enhance social inclusion and promote quality of life for physically disabled people.
To support disability professionals and assist the team to develop this aspect of care I have made detailed recommendations for change. They include: a new model of practice for physical disability teams; improvements in pre and post-registration education, as well as the development of organisational policy from national to local level. Position statements or guidelines from professional bodies would support practitioners, as would better awareness both in disability services and sexual health services. Finally, I suggest that relevant papers need to be published in profession specific literature and not appear solely in specialist publications like Sex & Disability.
The qualitative approach taken in this study has allowed a breadth and depth of understanding, previously unavailable, into why this is such a sensitive and difficult area of practice. This includes the complex systems and multiple deterrents that contributed to participants’ lack of confidence and their feelings of discomfort. The findings demonstrated that strong negative feelings can lead to defensive practice. Disability practitioners are firstly individuals subject to the cultural and social shaping of attitudes and beliefs. This study has mapped their professional journey from becoming health or social care practitioners to their membership in a physical disability team. This mapping has highlighted how professional education, professional bodies, and the organisational structures of health and social care all influence professional practice.
Based on the findings I have made comprehensive recommendations for change. Essentially disabled people must be recognised as fully human, inclusive of sexual needs and desires, and the services provided by community disability teams need to encompass this. Unwittingly, practitioners’ lack of competence may contribute to the oppression of disabled people by inferring sexuality no longer matters to them. The sexual disenfranchisement of disabled people is a story first told over thirty years ago. Others are placing it on the ‘agenda of the disability movement’ (Shakespeare 2000 p165). This study has placed it on the professional practice agenda. Health and social care should support the sexual health of people living with disability and not add to any cumulative damage caused through negative social attitudes.
Medical Foundation for AIDS & Sexual Health (2005) Recommended Standards for Sexual Health Services. London: Medical Foundation for AIDS & Sexual Health endorsed by the Department of Health.
Shakespeare, T. (2000) Disabled Sexuality: Toward Rights and Recognition. Sexuality and Disability 18 (3) p159-166.
Shakespeare, T., Gillespie-Sells, K. and Davies, D. (1996) The Sexual Politics of Disability. London: Cassell.
World Health Organization (2001) ICF International Classification of Functioning, Disability & Health. Geneva: World Health Organization.
The dissertation was prepared in 2007 for submission for the award of PhD. The examiners sought major changes. I began working on the changes however the changes, in my opinion, compromised the ethical integrity of the study. Therefore I withdrew from the PhD process. I am still asked for copies of this work. So I have made it available but it must read on the understanding that you are responsible for making your own judgement on the validity and reliability of the work.
In tune with the Social Model of Disability, Dr Tom Shakespeare summarises his ideal changes in society, that disabled individuals: