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Neuro rehab technology

Renovo addresses the need for sexual rehab after stroke

By Simone Budding, Ana Pessoa and Christopher Emsley

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Sexual expression is a positive, natural human need. But what happens when you had a stroke? 

Stroke guidelines acknowledge that the complications that impact the physical, psychological, and sociological levels affect not only stroke survivors’ sexuality but their partners’ too.

Physical deficits include limited mobility and weakness, fatigue, spasticity, hemianesthesia, (Stein et al., 2013, McGrath et al., 2019), loss of sensation, and loss of communication (Heron and Owen-Booth, 2022).

While psychosocially patients often experience mood and relationship changes, partners face a shift to a carer’s role result in reduced intimacy and creating emotional distance (McGrath et al., 2019). Survivors often suffer identity loss, reduced self-esteem, and changed relationships with their bodies, (McGrath et al., 2019) and could have the fear that participating in sexual activities could precipitate further strokes.

Students, who were on placement with Renovo, showed interest in how to address sexual rehabilitation post neurologic injury, therefore a journal club session was dedicated to this topic.

The students selected an article (Heron and Owen-Booth, 2022) and a survey was created from it for our multidisciplinary team to complete, to see how our results compared to what was already known in the literature.

Stroke guidelines acknowledge that health care professionals are often reluctant to raise the issue, and people with stroke are unlikely to raise the subject without encouragement.

Therefore, health professionals who do not address sexuality with their patients post-stroke are barriers to their patients resuming a healthy lifestyle post-discharge as they are left unprepared for the impact stroke will have on their sexuality (McGrath et al., 2019).

Stroke survivors are often left unaware of where to access support, leading to reduced sexuality correlating with depression, decreased physical and mental well-being, and poorer quality of life (McGrath et al., 2019).

We found that all professionals had differing opinions on just how wide or narrow the parameters of this topic lies. The Care Quality Commission (CQC) says: “Sexuality encompasses a person’s gender identity, body image, and sexual desires and experiences. This means people can have needs relating to their sexuality, regardless of their age, mental capacity, or personal history.”

According to the CQC, sexuality can mean different things to different groups of people. This guidance relates to:

  • sex, masturbation, sensuality, physical intimacy, romance, and physical attraction.
  • gender identity – the sense that we are male or female or not aligned with either gender.
  • sexual orientation, including heterosexual, homosexual, and bisexual.
  • personal dress, body image, personal grooming, and sexual expression.’’

According to the Occupational Therapy Practise Framework (OTPF) sexuality is a personal factor, and sexual activity is classified as a personal care activity of the daily living. The OTPF then defines sexual activity as engaging in the broad possibilities for sexual expression and experiences with self or others e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse (American Occupational Therapy Association. Commission on, 2020).

Furthermore, sex therapy and sexual rehabilitation should not be confused with one another (Crouch and Alers, 2014). Sex therapy has the primary focus on sexual dysfunction, whereas sexual rehabilitation includes the treatment of psychosocial and physiological aspects that influence sexuality (Crouch and Alers, 2014).

After considering the above definitions, the focus of our journal club and survey became clearer as to be on both sexuality and the engagement in sexual activity following a neurological injury.

The survey was sent out to doctors, nurses, physiotherapists, therapy assistants, occupational therapists, speech and language therapists, neuropsychologists, a music therapist, and a dietitian. The following questions were included in our survey:

  1. Do you address sex and sexuality with our patients during their rehabilitation process?
  2. If not, why not?
  3. Which discipline should address sex and sexuality in your opinion?
  4. At which stage in a patient’s recovery should sex and sexuality be addressed by professionals?
  5. Which age groups are sexually active and require sexual rehabilitation post-neurological injury?
  6. Who should receive education and training about sexual activity during the rehabilitation phase of recovery?
  7. Do you know of any resources/facilitators for sexual rehabilitation?

During the journal club, an open discussion was held to discuss the results and highlight the MDTs thoughts and feelings on the article and the wider topic of addressing sexuality with our patients.

The majority of the staff members answered that they only address sex and sexuality in rehabilitation if the patient specifically asked them to do so or brought the topic up first for discussion.

The main reasons for not addressing the topic were feeling that they did not have enough knowledge, they did not want to make the patient feel awkward by bringing up a sensitive topic to discuss and feeling that sex and sexuality did not fit into their professional roles.

Like every topic we discuss with our patients, it is important to normalise a conversation and provide an open and caring environment. The article chosen highlighted that there may be a level of embarrassment or worry surrounding the topic for both the patient and the professional.

As this can be a sensitive topic it is vital that all staff and patients feel safe and supported in discussions. It is also important to remember that we are working with vulnerable adults and sexual discussion could be misinterpreted by patients.

We had a mixed presentation of who was thought to be the best health care professional to address the topic. Most professionals felt that it was the role of the neuropsychologist to address sexuality with the patient, followed by doctors, and nurses.

Physiotherapy, speech and language therapy, and occupational therapy were tied in the fourth place. Interestingly, these results echo the findings from an American study exploring patients’ counselling preferences on sexuality post-stroke (Stein et al., 2013).

In literature it has been reported that addressing sex and sexuality post neurological injury should be an MDT approach as it is important to pull knowledge and skill from differing expertise (Heron and Owen-Booth, 2022).

In the Renovo team 42 per cent of participants identified the multidisciplinary team to be best situated to address sexuality.  It could also be that a patient might be more comfortable with a healthcare professional not traditionally thought of as “the” professional that should address sexuality (Heron and Owen-Booth, 2022).

However, caution is given that shared responsibility could lead to the responsibility being passed around by professionals (Heron and Owen-Booth, 2022). In So, in the journal club discussion we concluded that a team approach is required to address sexuality as it is not simply about the sexual experience itself. Intimacy, sensation, communication, positioning, fatigue is all associated with approaching sex.

From a person-centred perspective we looked at how “as a team” we can support an individual’s access and engagement by contributing together. No single professional in our team identified themselves as an “expert” in this area nor felt they had a solid grounding of sexuality during their professional studies with this often being glossed over during their training.

Our Renovo staff felt that sex and sexuality should be addressed in all stages of recovery – acute, rehab, and community. In the study we used to base our survey  on,  it was found that the home and community setting is more appropriate to address sexuality as patients usually only consider sexuality as a problem when they are back home (Heron and Owen-Booth, 2022).

In the hospital and rehab environment sexuality is not seen as a priority to address when other personal care activities are also impaired (Heron and Owen-Booth, 2022).

Literature highlights that stroke survivors want to receive information about sexual dysfunction after stroke but only 15.2 per cent actually received it (Stein et al., 2013). These survivors indicated that they were not provided with enough information on sexuality post-stroke and that they would like information before discharge from hospital and rehabilitation facility (Stein et al., 2013).

The CQC emphasise that social care settings should include the following in their care for patients:

  • Enabling people to manage their sexuality needs
  • Providing access to education and information
  • Educating regarding the risks associated with your patient’s sexuality needs
  • Recognising and support all needs to avoid discrimination.

All the Renovo staff voted that from sexual reproductive years to death are the age groups that should receive sexual rehabilitation.

A guidance document recently published by the CQC warns professionals that patients who reside in care homes or who are discharged to their own homes should not automatically be deemed as not having sexual needs. They encourage clinicians to make all practical implications and privacy possible for clients to manage their sexuality needs.

Two thirds of our staff voted that they did not know of any resources or facilitators to address sexuality, similar to findings from literature that identify the following barriers to addressing sexuality: limited resources including time, staff and access to handouts, the personal feelings of the staff, culture, attitudes, the knowledge of the staff and skill due to a lack of experience and training as well as a fear of a negative impact on the therapeutic relationship (Heron and Owen-Booth, 2022).

In the literature stroke survivors indicated that when they did receive information it was in the form of a brochure, leaflet, and then secondly from the physician (Stein et al., 2013). Almost a third of respondents wanted printed material as education and 27.1 per cent wanted a discussion with a physician (Stein et al., 2013).

Lastly, the team voted that the following team members had to be included in the sexual rehabilitation education: the patient’s spouse or partner, the next of kin, carers, healthcare professionals and the patient.

The literature recommends that clinicians be inclusive, and to provide sexual rehabilitation not only to patients who have partners but also to those who are single (Heron and Owen-Booth, 2022). There are screening tools available such as sexuality quality of life questionnaire, that may be helpful in the future to develop pathways for flagging in assessment procedures.

Stroke guidelines acknowledge that patients concerns about sex and sexuality should be assessed and then addressed with suitable intervention. They do, however, not provide guidance on what, how and with what to assess.

A document provided by CQC, however, mentions that they expect the following to be included in the assessment process: previous and current relationships, sexual orientation, understanding of sexual health, personal dress preferences and gender identity.

Renovo’s service provision at Hollanden Park Hospital has improved its quality of care regarding sex and sexuality in the following ways after hosting this journal club:

  • Awareness that sex and sexuality each have very specific definitions.
  • Agreement that sex therapy and sexual rehabilitation should be separated from one another. Therapists have the knowledge of the interrelated dynamics of the client’s physiological, neurological, psychologic and interpersonal relationship components that influence a client’s sexuality and are therefore ideal to address sexual rehabilitation.
  • Identification of considering sexual rehabilitation as part of person centred care.
  • Further clarification on the ethics, consent, and best interest of sexual rehabilitation with PDOC patient’s need to be explored and clarified.
  • Consideration of using pamphlets as useful resources to have on display for patients and families to read, as well as  aiding as facilitators to open the discussion of sexual rehabilitation.
  • Clarity has been given to the team as to what information should be included in the writing of the sexuality care plan.
  • Clarification needs to be sought about the current legislation on this topic from an expert in the field.

At Renovo we have been inspired by the students who completed their placement with us and by how the young inquisitive minds of the next generation of therapists helped us to improve the quality of our service provision.

For more info, visit renovocare.co.uk.

 

Authors: Simone Budding, occupational therapist, Ana Pessoa, neurologic music therapy clinical lead and Christopher Emsley, speech and language therapist

References:

AMERICAN OCCUPATIONAL THERAPY ASSOCIATION. COMMISSION ON, P. 2020. Occupational therapy practice framework : domain & process. 4th edition. ed. [Bethesda, MD]: American Occupational Therapy Association.

CROUCH, R. & ALERS, V. 2014. Occupational Therapy in Psychiatry and Mental Health. 5th ed. Hoboken: Wiley.

HERON, J. & OWEN-BOOTH, B. 2022. An exploration of the role of occupational therapists in addressing sexuality with service users post stroke. British journal of occupational therapy, 85, 29-36.

MCGRATH, M., LEVER, S., MCCLUSKEY, A. & POWER, E. 2019. How is sexuality after stroke experienced by stroke survivors and partners of stroke survivors? A systematic review of qualitative studies. Clinical rehabilitation, 33, 293-303.

STEIN, J., HILLINGER, M., CLANCY, C. & BISHOP, L. 2013. Sexuality after stroke: patient counselling preferences. Disability and rehabilitation, 35, 1842-7.

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