The impact of assistive equipment on intimacy and sexual expression.
Abstract: Introduction: Sexuality is a holistic concept that involves more than the sexual act. Despite being a quality of life domain that promotes meaningful existence, it is an aspect of life that is often avoided by health care practitioners.

Method: In this Heideggerian phenomenological study, conversational interviews were conducted with 13 people with motor neurone disease, and 10 of their partners, in order to understand their experiences of sexuality and intimacy.

Findings: The findings provide evidence for the value of touch in people's lives and shed light upon the impact that assistive equipment has on intimacy, sexual expression and maintaining emotional and physical connection between couples. None of the people interviewed had previously been given the opportunity to discuss these issues with their occupational therapist.

Conclusion: There is a place in occupational therapy practice for discussing the value of emotional and physical connection for individuals in the context of any equipment provided.

Key words: Amyotrophic lateral sclerosis, equipment, intimacy, life-limiting, motor neurone disease, palliative care, phenomenology, relationship, sexuality, touch.
Article Type: Report
Subject: Occupational therapy (Practice)
Exercise equipment (Usage)
Occupational therapists (Powers and duties)
Sex (Psychology) (Research)
Sex (Psychology) (Health aspects)
Author: Taylor, Bridget
Pub Date: 09/01/2011
Publication: Name: British Journal of Occupational Therapy Publisher: College of Occupational Therapists Ltd. Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2011 College of Occupational Therapists Ltd. ISSN: 0308-0226
Issue: Date: Sept, 2011 Source Volume: 74 Source Issue: 9
Topic: Event Code: 200 Management dynamics; 310 Science & research
Product: Product Code: 3949470 Physical Fitness & Exercise Equip; 3841223 Exercise & Stress Test Eqp NAICS Code: 33992 Sporting and Athletic Goods Manufacturing; 33911 Medical Equipment and Supplies Manufacturing SIC Code: 3949 Sporting and athletic goods, not elsewhere classified
Geographic: Geographic Scope: United Kingdom Geographic Code: 4EUUK United Kingdom
Accession Number: 268480492
Full Text: Introduction

Sexual expression is regarded as a fundamental human right (International Association for the Study of Sexuality and Culture in Society, n.d.) that contributes to quality of life (Bowling 2005). Pollard and Sakellariou (2007) argued that the expression of sexuality through the act of sex is both a human occupation and an occupational health need. Despite this, research from the late 1990s has consistently shown that sexuality continues to be avoided or given scant attention by occupational therapists (McAlonan 1996, Couldrick 1998a, Novak and Mitchell 1998, Northcott and Chard 2000). Since this period, there has been a distinct lack of research evidence that describes current practice in this area. Despite this, sexuality is argued to be an important element of self-care (Chapparo and Ranka 2000) and as a quality of life domain that, for many, promotes meaningful existence (Foley 2004).

There is a similar paucity of research on the impact of equipment on relationships. One study by Sainty et al (2009) considered the impact of equipment on quality of life. Their sample was recruited from monthly returns to community equipment stores and was an evaluation of assistive equipment for mobility, toileting, bathing, domestic and sensory needs. They did not include the reasons that equipment was provided and did not ask about any impact upon relationships. A similar survey by the Social Policy Research Unit at York University (2000) focused upon the impact of equipment on independence, safety, ease of performing tasks and pain. Again, the impact upon relationships was not considered.

A qualitative study by Bowden and Bliss (2008) found that the introduction of a hospital bed had an impact upon the meaning of 'home' for couples. Their literature review was unable to identify any research data that described the impact of a hospital bed on intimacy or sexual expression (Bowden and Bliss 2009).

Pain et al (2003) highlighted the complexities of decision making when selecting appropriate assistive devices. Based upon an evaluation of the published evidence, their book sets out issues for individuals, carers and therapists to consider when choosing equipment. It emphasises the importance of identifying the requirements and preferences of individuals, of those providing assistance or care as well as others in the household. However, their focus upon others in the household and those who provide personal assistance means that they have not explicitly considered the requirements and preferences of partners. In their chapters on seating and assisted moving and handling, there is no discussion of the impact that equipment might have upon sexual contact, hugging, kissing or maintaining connection between couples. Given that they considered 'occupational performance' to include a range of activities, from getting out of bed, to hobbies or paid employment (Pain et al 2003), it is surprising that they did not explicitly recognise the maintenance of relationships as an occupation.

This article presents two of the findings from a larger study that considered the lived experiences of people living with a life-limiting illness and their partners. The two conditions explored were motor neurone disease (MND) and life-limiting cancer. The themes presented in this paper are the importance of touch and the impact of equipment on partnered relationships for people living with MND. The role of the occupational therapist is presented within the context of these themes.

Background

Motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), is a malignant neurodegenerative condition affecting the motor nerves (Talbot et al 2010). This results in impaired mobility, although the sensation of touch is unaffected. The incidence of MND increases with age, with only one-third of individuals experiencing their first symptoms under the age of 50 (Beghi et al 2007). It is more prevalent in men until the age of 70, when the ratio of men to women equalises (Talbot et al 2010).

Little is currently known about sexual fulfilment for people with MND, although older studies have shown that people who become disabled prioritise sexual fulfilment over early ambulation (Conine and Evans 1982, Tepper 1999). More recently, Kaub-Wittemer et al (2003) conducted a quality of life survey of people with MND who were ventilated. Two disease-specific questionnaires were developed which included validated quality of life instruments, one for the person with MND and the other for his or her primary carer. The response of 52, from a possible 102 respondents, potentially introduced bias as the perspective of the non-responders may differ. Nonetheless, 56% of people with non-invasive ventilation and 43% with tracheostomy ventilation reported that sexual activity was an important issue. This shows that even when MND has impacted significantly upon people's health, sexual expression remains a valued occupation.

Because of the limited research available on sexuality in life-limiting illness, a qualitative study was undertaken to answer the following research question: 'What are the experiences of people with MND and their partners in relation to sexuality and intimacy?'

Aims of the study

The aims of the study were:

* To understand the impact of life-limiting illness on the expression of sexuality and intimacy for people with MND and their partners

* To understand the meaning of sexuality and intimacy for these individuals

* To identify recommendations for health care practice.

Method

Ethical considerations

Ethical approval for this study was granted by the Milton Keynes NHS Ethics Committee (study number 08/H0603/3).

The wellbeing of participants took precedence over the research aims at all times. Written consent was obtained before each interview took place and individuals were informed of the right to withdraw, without giving a reason and without their care being affected.

Participants were asked at the start of each interview to say if they became tired, felt unwell or wished to end the interview. When participants appeared tired or emotionally distressed they were given the opportunity to stop, and verbal consent was re-established before continuing. An opportunity to debrief was provided at the end of each interview, and participants were offered information about supportive services.

Where both the person with MND and his or her partner participated, information shared by one was not disclosed to the other. This was explained in the study information sheet. All interview transcripts were anonymised and all names used in this article are fictitious.

Methodological approach and procedure

The lived experiences of people with MND and their partners were sought using Heideggerian hermeneutic phenomenology. This particular approach to phenomenology values the subjective experiences of individuals and supports the view that the researcher's subjectivity cannot be set aside (through 'bracketing'), but must be accounted for within the analysis (Benner 1994, Mackey 2005).

A purposive sampling strategy was used to capture a variety of MND phenotypes. Participants were recruited through one specialist MND clinic and adults were invited to take part if they were aware that their illness was life limiting and they were able to speak English (because the sensitive nature of sexuality precluded the use of an interpreter). Exclusion criteria were being unable to consent and being considered too ill by their consultant or specialist nurse. The specialist nurse explained the study to individuals and invited them to take away further information to read. They were assured that the researcher was independent of the clinic and that staff there would not be told who participated. Those interested returned a reply-slip in a stamped-addressed envelope that was provided.

Consistent with this methodological approach, conversational interviews were used. These interviews involved a two-way exchange of information, with the researcher concentrating upon listening to what was said, rather than guiding or controlling (Kahn 2000). An interview schedule was, therefore, not used so that issues that were important or meaningful to the participants were free to emerge (Sweeney et al 2007).

The interviews were conducted between August 2008 and March 2010 with 13 people with MND and 10 of their partners from eight counties in the south of England. One participant was bisexual and the remainder were heterosexual. Ages ranged between 32 and 82 years (Table 1). Where people consented to a second interview, this occurred 2-6 weeks later. Three of the participants were only interviewed once; one person's health deteriorated (this couple withdrew before the second interview) and the other person gave no reason.

Interviews were conducted in a location chosen by the participant (mostly his or her own home), were audio-recorded and were transcribed verbatim. They averaged 66 minutes in length. Where both the person with MND and his or her partner took part, they were interviewed separately.

During the interviews, individuals were asked:

* Their reasons for taking part in the study

* How MND affected them in their day-to-day life

* Whether this had affected intimacy or sexuality

* Whether health care professionals had spoken with them about this.

Prompts were used to encourage elaboration and to explore experiences in more depth. Field notes were maintained throughout data collection and analysis to record the researcher's thoughts and feelings, so that these could be distinguished from the experiences of participants.

Analysis

Diekelmann's and Ironside's (2006) approach to hermeneutic analysis was used, as it is consistent with Heidegger's (2007) hermeneutic circle of interpretation. This requires an iterative process of reading, re-reading and interpreting the transcripts to identify themes, and then returning to the transcripts to confirm these preliminary themes through further re-reading across all of the transcripts. This paper reports the findings of the earlier analytical stages, which identify descriptive themes. The themes presented here were confirmed in subsequent interviews and were found inter-participant as well as intraparticipant. This demonstrates rigour by indices of convergence (Draucker 1999).

Researcher's perspective

Consistent with Heideggerian hermeneutics, it is important to clarify for readers my pre-understandings as researcher so that they can judge for themselves the trustworthiness of the findings. I worked as a district nurse in the days before hospital beds became the norm for people needing care from paid carers. I thought nothing of crawling across a double bed to nurse someone who was dying, and used to debate with colleagues the assumption that it would be 'best' if a single bed were moved downstairs. It therefore came as no surprise to me during the interviews that a hospital bed disrupted relationships. I did not explicitly ask research participants about this, or indeed how they felt about the equipment. This was information that the participants provided without direct questioning or prompting.

Findings

Three themes are presented here: the importance of touch, the impact of equipment upon relationships, and the role of the occupational therapist.

The importance of touch

Both partners and people with MND stressed the emotional benefits of touch and its importance in maintaining relationships. Touch was a means of connecting as a couple, of maintaining an emotional bond. This connection was not always dependent on sexual activity, although for some it was an important part of their relationship:

Just being in bed; waking up in the morning next to each other and having a cuddle; even if you're not making love, it's just, you know, it's nest-making isn't it. We used to spend hours in bed sometimes just talking, I mean we just liked being in bed all the time. We'd have tea in bed in the morning; even when Jim was working we'd make love, I mean it's just always been there (Female partner).

But when I go to bed at night, um, to actually remove your bedclothes and to be close and intimate, to me that's something altogether different. It's just something warm and tender and I just love that feeling. It's just nice when the two of you are together, whether you're caressing each other or just close to each other, I think that's absolutely brilliant and you don't even necessarily have to go through the full act of making love; it's a real connection, it's a real bonding isn't it, it's a real bringing together. It means a huge amount to me (Man with MND).

These two quotes illustrate the significance of connecting through touch, regardless of people's age.

The impact of equipment upon relationships

Wheelchairs, hospital beds, reclining armchairs and walking aids were all described as restricting the intimacy that is expressed through touch. Access between the person with MND and his or her partner was restricted, impacting upon both the frequency and the quality of the intimate exchanges:

I always sort of kiss him goodnight when he's in bed, but just a light kiss. It's quite a difficult act to kiss properly when someone's, you know, always at a distance, in an armchair or something, you can't actually physically manage it very easily (Female partner).

Converting a downstairs room into a bedroom, and the introduction of a hospital bed, had a significant impact upon many couples. The hospital bed did not only impact upon the person with MND. As one partner explained, 'I haven't actually been in a single bed for 40 years.'

Discussions about introducing a hospital bed herald separation, and for some brought home the reality of the condition and the individual's mortality:

That's the side of things [creating a bedroom downstairs] where, you know, again it brings home the fact. It's the only area where it just seems to bring the future home to me. Because unless you're talking, when you're not talking about the bedroom and about what goes on in the bedroom and how ... life to me goes on as normal. But suddenly that's where the normality of life is completely gone (Man with MND).

Obviously when we had to get the hospital bed, things like that were also difficult for Dave, you know, it wasn't the fact that it was a hospital bed, it meant that he was going to be in a separate bed to me and he just wanted to be next to me and I wanted to be next to him, but obviously I had to recognise from a carer's point of view that it was actually going to be better for him (Female partner).

This last example emphasises the benefit to others (professional carers) at the expense of closeness, intimacy and sexual expression for the couple.

One woman in her seventies spoke of the intimacy she and her husband used to share in their double bed. Now, due to the hospital bed, she was alone upstairs while her husband slept downstairs. Until the hospital bed was delivered, this couple had maintained their sexual relationship. Its loss was a source of distress and had not been anticipated before the bed was delivered. The research interview heralded a realisation for this partner that her own sexual life may also be over:

We've always had a very good sex life, we were always, you know, over forty years. You suddenly think, gosh, I'll never make love again, isn't that terrible [crying] it sounds silly when you're nearly seventy to start worrying about something like that; but it doesn't change does it (Female partner).

This woman had never imagined that sex would not be a part of her life. Her husband was older than her and valued the sexual side of their relationship equally.

Other equipment that impacts upon the expression of sexuality includes lightwriters. In the following extract, the person unable to speak had lost a means of conveying her love for her partner, no longer being able to maintain an emotional connection through words:

When I want to tell him how much I love him it doesn't sound the same from a machine (Woman with MND).

'I love you' spoken in an electronic, male-sounding voice did not convey the emotion she intended. As a result, this woman later acknowledged that she had stopped telling her partner that she loved him.

Overcoming the restrictions equipment imposed

Some of the couples were unable to describe the ways in which they had overcome these barriers to intimacy, merely stating that hugs, kisses and sexual activity had reduced or even stopped. This reduction in intimacy illustrates the changing roles within coupled relationships:

I think we need maybe to do that [cuddle] a bit more, to come a bit closer like that rather than be a bit like the carer and the patient (Woman with MND).

Others made considerable effort to maintain a connection. One couple, for whom it was suggested that they sleep in separate rooms, insisted on having the hospital bed in their bedroom:

... I said that is not an option, I'm sleeping with my husband (Female partner).

This couple replaced their double bed with a single one, so that they could push it alongside the hospital bed and maintain a physical, sexual and emotional connection between them as a couple. They only separated the beds when the partner or professional carers needed to provide care:

I still used to make an effort with him, you know, I would still be close, even to the point if the only bit of skin contact we had was me putting my leg over into his bed in the night time and just having my leg next to him so that he could feel me (Female partner).

Other couples also missed the physical intimacy that had been an essential part of their lives until the day that the hospital bed was delivered. One older couple went to considerable lengths to find a way of being able to lie next to each other:

I bought, only very recently, one of these big, blow-up mattresses you see advertised for when your friends come unexpectedly. I've worked out that if I move his chair downstairs, I could put it in the living room and we could at least lie together on the bed. We've only done it once and it wasn't terribly satisfactory . the hoist got him halfway down and then I suddenly thought, oh gosh if he lies down here, the hoist is going to be going this way and I'm never going to get him up again and I had to practise moving the bed so that he . it was all such a hassle and performance, by the time we actually laid on the bed, we were both exhausted ... you know, Jim can't move or do anything and the bed was quite bouncy and I was worried he would slide off, so it wasn't the most successful. But I couldn't think of any other way. Jim said why don't we just lay on the floor and I thought that would be too hard for him. Then I saw this thing, I went on line and found it. I haven't got it out again. I said to Jim the other day 'shall I get it out?' But, oh, maybe another day (Female partner).

Despite her husband's failing health, this woman hung on to the dream that perhaps she would get the double mattress out again. Her need to re-create that nest that she and her husband had shared for all of their married life remained strong. Her husband died less than 3 weeks after this interview. It had not occurred to him or his wife that their occupational therapist might be able to support them with this need. The suggestion from Jim' that they try the floor emphasises just how important this close physical contact was to them as a couple. They 'couldn't think of any other way'.

The role of the occupational therapist

When asked if any of the health care professionals involved in their care had spoken about sexuality or intimacy, most participants stated that these conversations had not taken place with any health care professional. Three participants did mention occupational therapists, but reported that their occupational therapist had not discussed the subject with them. When one partner had to move into a separate room to make way for the hospital bed, the occupational therapist had provided a 'baby' alarm to maintain a means of verbal contact. The occupational therapist had not acknowledged the loss of touch, intimacy and normality that the hospital bed imposed for this couple.

One woman spoke of being unable to imagine a conversation with her occupational therapist:

An OT has never discussed anything other than aids, things that you need like bars to get you off the loo or whatever and things like that. I don't know, I think it would have to be somebody that you felt empathy with to discuss it. I mean I wouldn't sort of want an OT 'cause I mean they can change so often, popping in and saying, 'now I think I'll fit the loo rail' and then 'how's your sex life?' (Woman with MND).

Because none of the participants had spoken with an occupational therapist about sexuality or intimacy, they were unable to imagine what role an occupational therapist might have.

Discussion

This study has shown that couples of all ages living with MND still value and engage in sexual activity. Although, for some, this is no longer an essential component of their relationship, for others, it is of high importance. For participants who did not have a sexual relationship, non-sexual touch and verbal expressions of love were treasured as a means of connecting with others. This need for physical and verbal connection is consistent with people receiving palliative care for cancer in a Canadian study (Lemieux et al 2004). The need for tenderness and warmth, described as an emotional connection, is an important means of validation for individuals. The participants in both the Canadian study and this one described touch and its role in maintaining normality and connection with others.

MND restricts people's movement, yet this study has shown that some of the equipment that is provided further restricts people's capacity for intimacy and touch. Heidegger's (1977) concern with technology, written first in 1954, is as relevant today as it was then. Heidegger proposed a radical way of thinking about technology, moving us beyond the idea of technology as a 'means to an end'; he called us to question 'technology's essence of revealing' (Zitzelsberger 2004, p242) and to consider the threat and promise of technology (Wrathall 2005) in our relationship with it. In the context of people with MND, the equipment (technology) that is provided is more than a 'means to an end'; it impacts upon people's lives in both positive and negative ways.

The 'promise' of this technology was not discussed in these interviews, and it is important to recognise that the equipment discussed here may also have had significant benefits for these people's lives. However, what is noticeable is the 'threat' of technology (Wrathall 2005) that is evident in these participants' stories. For participants who had maintained an intimate relationship until the hospital bed was delivered, the delivery of the bed signified a point of breakdown. At times of breakdown, 'the normalcy of everyday life is disrupted' (Sloan 2002, p159). It is at these times of breakdown that the taken-for-grantedness of everyday life is exposed and becomes visible (Heidegger 2007). The forced separation imposed by the hospital bed disrupted the normalcy of couples' everyday means of being-with-each-other, of communicating love and affection through touch and close physical contact. The hospital bed, wheelchair, riser-recliner chair and walking aids that were introduced to enable were also disabling because they became barriers that separated couples.

Sexuality as a human occupation

The Model of Human Occupation (MOHO) views each person as a unique individual, and is supported by a wealth of empirical research (Kielhofner 2008). This model consists of three broad areas of activity, those involving daily living, productivity and leisure (Sumsion 2006, Kielhofner 2008). It is unclear which of these areas of activity encompasses the expression of sexuality. The activities of daily living described in MOHO appear to be somewhat functional because they relate to self-care activities that include mobility, personal hygiene, dressing and feeding, and do not explicitly include sexuality. However, some individuals in this study spoke of their sexual life as if it were a daily activity; as one woman said, it has 'always been there'. Or in her husband's words, sexuality was 'like breathing'--effortless and essential for life. These individuals may perceive their shared sexual life to be 'an activity of daily living', which, for them, may be more important than other activities of living (Couldrick 2005).

To distinguish between the 'leisure' and 'productivity' elements of MOHO, Kielhofner (2008) explained that 'play' is done for its own sake, whereas 'work' is productivity that provides for others. The expression of sexuality through touch or sexual activity could, therefore, fall under both of these areas, depending upon the meaning that they hold for each person. If touch and sexual expression provide for others, then they could be considered to be productive, as productivity is not restricted to work in any monetary sense (Kielhofner 2008). As touch and sexual expression are so often mutual activities, communicating a wealth of emotions, their actions provide for others at the same time as being for their own sake.

Kielhofner (2008, p5) argued that 'occupation expresses and maintains the social fabric that surrounds us'. For some people, sexual expression remains important and meaningful despite MND and contributes towards their quality of life (Kaub-Wittemer et al 2003). The connection that people have described in this study does not necessarily involve sexual activity (though for some it does), but is reliant upon touch to maintain the social fabric of their coupled relationship. 'People make places in the social world for themselves by what they do' (Kielhofner 2008, p5). If they are no longer able to communicate with their partner verbally, through touch or sexual expression, this may contribute towards limiting their place in their social world and contribute towards them seeing themselves as 'the carer and the patient'.

The occupational therapist's role

Many of the participants in this study voiced how helpful it had been to have the opportunity to speak about this important aspect of their lives during the research interviews. They valued the opportunity to talk about their experiences, the adaptations they had needed to make and the multiple losses they experienced.

None of the participants, however, reported being given the opportunity to discuss these issues with the occupational therapists involved in their care. As this study did not involve interviewing occupational therapists, it is impossible to know their reasons for not discussing sexuality when introducing this equipment. A possible explanation might be an assumption that sex was no longer an occupation for these couples. Further research is needed to understand current practice to determine the factors that enable or inhibit occupational therapists to broach these issues with individuals.

What is notable is that neither the people with MND nor their partners were able to identify a role for occupational therapists. Several people in this study expressed fatalism, not seeing anything to be gained by any professional broaching the subject of sexuality, saying 'What's the point? What can they do?' This echoes the views expressed by participants in Northcott's and Chard's (2000) study. However, as none of the participants in their study, or this one, had experience of occupational therapists initiating discussions around sexuality, it is not surprising that people were unable to identify any benefit in discussing this aspect of their lives with occupational therapists.

Now that sexual activity has been classified by the American Occupational Therapy Association (2002) as an activity of daily living, Sakellariou and Algado (2006) have expressed concern that occupational therapists will only address sexuality when they perceive sexual function to be problematic. The findings of this study have shown that sexuality encompasses more than sexual function and is expressed in a variety of ways that can be impeded by the equipment that occupational therapists and other professionals provide.

If individuals are seen to be the experts in their condition (Department of Health 2001), then it would help therapists to understand the role that sexuality has in the occupational life of each individual (Sakellariou and Algado 2006). For more than 20 years, authors have consistently argued that a lack of enquiry by people should not be presumed to be a lack of concern (Neistadt 1986, Summerville and McKenna 1998, Davis and Taylor 2006). In order to identify an individual's concerns, preferences and expectations, people may benefit from being given 'permission' to voice what is important to them, but is rarely verbalised (Taylor and Davis 2006, Marsden and Botell 2010), and to describe the meaning that these occupations have for them and their coupled relationship.

Limitations of the study

It is feasible that people who agreed to take part in a study on sexuality valued this aspect of their lives more highly than those who chose not to participate. However, most of the participants in this study gave their reasons for taking part as wishing to contribute towards research for an otherwise under-researched, incurable condition and not because of the subject matter itself. Their experiences and feelings about intimacy and sexual expression, therefore, might not be dissimilar to others.

Because of the sensitivity of the subject matter, the rich descriptions of experiences that one might expect to find in phenomenological studies were much briefer in this study. More prompting was needed to encourage participants to talk about these personal aspects of their lives, so further issues in relation to sexuality may have not been revealed.

This study had intended to capture the experiences of people of all sexualities. However, the recruiting nurse was unaware of anyone attending the clinic who was not heterosexual. Further research is needed to understand the experiences of people who are gay, lesbian or bisexual. Other individuals who were under-represented were those who rely on technology to communicate. Further research is needed to understand the impact of speech-assistive devices upon relationships.

Conclusion

This study sheds light upon the impact that equipment has on intimacy, on sexual expression and in maintaining emotional and physical connection between couples. Although the findings of qualitative research are not generalisable, it is feasible that these findings might also echo the experiences of people with other medical conditions who rely on assistive equipment. Further research is needed in these areas.

Equipment provision is a complex matter that involves careful consideration of a variety of factors, including cost and availability (Pain et al 2003), the priorities of the individual and the needs of carers. As the purpose of occupational therapy is to support people in fulfilling their potential as occupational beings (College of Occupational Therapists 2009), occupational therapists have a role in maintaining social roles that 'have value, meaning or purpose' (Couldrick 1998b, p495). This includes identifying the role that touch and sexual expression have in the occupational lives of individuals when considering the provision of equipment.

Key findings

* Couples living with motor neurone disease maintain a connection with each other through verbal exchange, through various forms of touch and through sexual activity.

* Assistive equipment impedes communication and connection.

* When introducing equipment, occupational therapists have a role in discussing its potential effects on intimacy and sexual expression.

What the study has added

This study presents the voices of service users and of partners of people with motor neurone disease, and provides evidence for the impact of equipment on intimacy and sexual expression.

Acknowledgements

With grateful thanks to all participants who gave of their time and shared their experiences in the interviews. With thanks also for the support of my PhD supervisors from Oxford Brookes University: Professor Mary Boulton and Dr Jane Appleton.

This study has been partly supported by a grant from Oxfordshire Health Services Research Committee.

Conflict of interest: None declared.

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Correspondence to: Bridget Taylor, Senior Lecturer, Faculty of Health and Life Sciences, Oxford Brookes University, Jack Straws Lane, Marston, Oxford OX3 0FL. Email: bmtaylor@brookes.ac.uk

Reference: Taylor B (2011) The impact of assistive equipment on intimacy and sexual expression. British Journal of Occupational Therapy, 74(9), 435-442.

DOI: 10.4276/030802211X13153015305637
Table 1. Details of participants
                                   30-39   40-49   50-59   60-69
                                   years   years   years   years
Men with motor neurone disease                       5       1
Women with motor neurone disease             1       1       2
Male partners                                        2       1
Female partners                      1       1       1       2

                                   70-79    80-89   Total
                                   years    years
Men with motor neurone disease       1        1       8
Women with motor neurone disease     1                5
Male partners                        2                5
Female partners                                       5
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