**4. Current research**

In order to explore women's experiences of sexual health when living with RA and their experiences of physiotherapy in this context, a research plan of four studies was prepared. Two of the completed studies are discussed in this chapter.

The first study was a qualitative interview study. The study consisted of interviews with ten women with RA on their views of how their sexual health was affected by RA and how their sexual health could be improved (Josefsson and Gard 2010). The subjects ("informants") varied in age (42-66 years old), illness duration (2-31 years) and HAQ levels (0-2.13). The material from the interviews was analysed with a phenomenological approach according to Giorgi (Giorgi 1985; Giorgi 2000). This model of analyses contains the following steps:

1. Reading through the material to get a general sense of the whole statement.

Sexual Health and Intimate Relationships in Rheumatoid Arthritis 221

affected their sexual life. While others felt that their relationships suffered due to the sexual health problems. That sexual health should be free of coercion is stated by WHO and was not thought by the authors to be an issue for this group of informants, but still there were mentions of feelings of pressure to have sexual intercourse and also a direct mention that physical force should not be involved in sexual activities and that sexual activities should be voluntary. Perhaps coercion within intimate relationships for women with RA is more

*"I´m tired. And then it is all of the medication that lowers the sexual arousal so much. I have talked to my husband about it. That it is like, nothing. And still, I feel sorry for my husband… you have to do* 

A majority of the informants had experienced several of those problems. The informants thought that improving sexual health could be done by removing or decreasing the

Suggestions on how this could be done were improved partner communication and

*"So I think it is up to each person, but I´m sure that a lot of people would want someone to talk to. Except the partner, that you might not dare to talk with. Or you might think is embarrassing. If you have a conversation with someone about your sexual life, perhaps it is easier to come home and talk to* 

Physiotherapy was considered to improve sexual health via pain reductive treatment, and exercise interventions by improving physical function, joint mobility, and fatigue. Physiotherapy for persons with RA is often directed towards increasing the level of physical activity and it is important that physiotherapists appreciate that, according to patient's

*"Physiotherapy is good to be able to keep mobile and strong and to give feelings of satisfaction. By* 

Experiences of positive feelings during physiotherapy and how those positive emotions can be of importance and enhance the effects of the physiotherapy interventions have been investigated (Gard 2000) but needs further exploration before being adopted for routine

The results of the study lead to the conclusion, that physiotherapy can play an active role in

To further increase knowledge of the impact of RA on sexual health and how physiotherapy could affect it, a larger, second study was performed to complement the interview study (Josefsson & Gard, in print). This study was based on a new questionnaire, which was derived from the themes in the interview study and from earlier studies in the field (Josefsson and Gard 2010; Hill, Bird, and Thorpe 2003). Both men and women were included in this study so that possible gender differences could be explored. The results of this study show that a large majority of the patients agreed that there were strong connections between sexual health and pain, stiffness, fatigue, and physical function. Body image was affected by RA, but the study showed that the person's body image could be positively as well as negatively influenced after the diagnosis of RA. Most other studies have only shown a negative influence on body image of RA (Gutweniger et al. 1999). Although one study showed that body image did not affect sexual relationships for persons with RA (le Gallez 1993). The differences concerning the effect on body image by RA indicates that further

*physical exercise you feel pleased with your body. Otherwise you lose your desire…"* 

improving sexual health for patients with RA according to the informants.

common than for other women and this is a field for future research.

*it just so he won´t get hysterical. Yes, it has changed."* 

feedback, this can also be used to improve sexual health.

mentioned problems. *"Take away the tiredness!" "If I didn´t have the pain."* 

*your partner after that."* 

physiotherapy.

clinical use.


The following themes emerged from the analysis of the material: Sexual health - physical and psychological dimensions; and, Impacts of RA and Possibilities to increase sexual health - does physiotherapy make a difference?

The informants' view of sexual health showed individual views but all the informants believed sexual health to be complex and composed of several different physical and psychological factors. Described factors, such as, caresses, feelings of closeness and attractiveness, and affectionate attitudes towards the partner, as well as sexual activities and sexual intercourse were included in their view of sexual health. This broad perception of sexual health by the informants is in line with the definition of sexual health by WHO (Defining sexual health. Report of a technical consultation on sexual health, 28-31 January 2002, Geneva 2006).

*"Sexual health is close companionship, to be there for each other. Sexual health is also touching each other in a loving way."* 

The informants also included feelings that arise in sexual situations and intimate relationships into their description of sexual health.

*"Sexual health is being together and caring for someone. Sexual health gives happiness and joy."* 

Some of the informants described their views of what sexual health is and at the same time how it was affected by RA. Sexual health was limited for some of the informants, for example, parts of what they described as sexual health was accepted (e.g. closeness) and other parts were rejected (e.g. sexual intercourse).

They also believed that their view of sexual health and its importance changed during the lifespan. This could be due to other changes in life and to age.

*"You do revalue things. I wouldn´t have answered the same way 10 years ago as I do now."* 

An example of specific sexual problems mentioned by the informants was the difficulties that can come after having joint surgery.

*"But then it was my first hip replacement, well… It was so hard to come back after that, because I was so afraid that something would happen. I was so lucky, so I had both hips done at the same time."* 

 The results of this study show that the informant's sexual health was negatively affected by RA due to pain, fatigue, decreased joint mobility and anxiety. Experienced negative emotions due to RA included anger, frustration, and fear of being abandoned by the partner. Fear of being left by the partner might be considered as a threat and cause anxiety, which can further decrease sexual health.

*"And then it´s like this, if somebody touches me, it hurts."* 

The informants also linked RA to decreased sexual arousal and sexual satisfaction.

*"The arousal is gone and then you know that it is going to hurt when you try (to have intercourse). It first feels good, but then you know it is going to hurt and you think, should I tell, should I not? And afterwards it will hurt even more."* 

*"The sexual satisfaction is not like before. Definitely not. I don´t know what has happened."* 

The problems with sexual health due to RA also affected the informants´ intimate relationship with their partner. Some of the informants thought that their relationships had changed, but that they had a mutual understanding with their partner about how RA had affected their sexual life. While others felt that their relationships suffered due to the sexual health problems. That sexual health should be free of coercion is stated by WHO and was not thought by the authors to be an issue for this group of informants, but still there were mentions of feelings of pressure to have sexual intercourse and also a direct mention that physical force should not be involved in sexual activities and that sexual activities should be voluntary. Perhaps coercion within intimate relationships for women with RA is more common than for other women and this is a field for future research.

*"I´m tired. And then it is all of the medication that lowers the sexual arousal so much. I have talked to my husband about it. That it is like, nothing. And still, I feel sorry for my husband… you have to do it just so he won´t get hysterical. Yes, it has changed."* 

A majority of the informants had experienced several of those problems. The informants thought that improving sexual health could be done by removing or decreasing the mentioned problems.

*"Take away the tiredness!"* 

220 Rheumatoid Arthritis – Etiology, Consequences and Co-Morbidities

2. Re-reading of the material to discriminate meaning units from a holistic perspective and

3. Going through the meaning units and expressing deepened insight contained in them

4. Synthesizing of the transformed meaning units into a consistent statement regarding

The following themes emerged from the analysis of the material: Sexual health - physical and psychological dimensions; and, Impacts of RA and Possibilities to increase sexual health

The informants' view of sexual health showed individual views but all the informants believed sexual health to be complex and composed of several different physical and psychological factors. Described factors, such as, caresses, feelings of closeness and attractiveness, and affectionate attitudes towards the partner, as well as sexual activities and sexual intercourse were included in their view of sexual health. This broad perception of sexual health by the informants is in line with the definition of sexual health by WHO (Defining sexual health. Report of a technical consultation on sexual health, 28-31 January

*"Sexual health is close companionship, to be there for each other. Sexual health is also touching each* 

The informants also included feelings that arise in sexual situations and intimate

They also believed that their view of sexual health and its importance changed during the

An example of specific sexual problems mentioned by the informants was the difficulties

*"But then it was my first hip replacement, well… It was so hard to come back after that, because I was so afraid that something would happen. I was so lucky, so I had both hips done at the same time."*  The results of this study show that the informant's sexual health was negatively affected by RA due to pain, fatigue, decreased joint mobility and anxiety. Experienced negative emotions due to RA included anger, frustration, and fear of being abandoned by the partner. Fear of being left by the partner might be considered as a threat and cause anxiety,

*"The arousal is gone and then you know that it is going to hurt when you try (to have intercourse). It first feels good, but then you know it is going to hurt and you think, should I tell, should I not? And* 

The problems with sexual health due to RA also affected the informants´ intimate relationship with their partner. Some of the informants thought that their relationships had changed, but that they had a mutual understanding with their partner about how RA had

*"You do revalue things. I wouldn´t have answered the same way 10 years ago as I do now."* 

The informants also linked RA to decreased sexual arousal and sexual satisfaction.

*"The sexual satisfaction is not like before. Definitely not. I don´t know what has happened."* 

*"Sexual health is being together and caring for someone. Sexual health gives happiness and joy."*  Some of the informants described their views of what sexual health is and at the same time how it was affected by RA. Sexual health was limited for some of the informants, for example, parts of what they described as sexual health was accepted (e.g. closeness) and

to focus on the experience of sexual health when living with RA.

more directly.

2002, Geneva 2006).

*other in a loving way."* 

the subjects' experience.


relationships into their description of sexual health.

other parts were rejected (e.g. sexual intercourse).

that can come after having joint surgery.

which can further decrease sexual health.

*afterwards it will hurt even more."* 

*"And then it´s like this, if somebody touches me, it hurts."* 

lifespan. This could be due to other changes in life and to age.

*"If I didn´t have the pain."* 

Suggestions on how this could be done were improved partner communication and physiotherapy.

*"So I think it is up to each person, but I´m sure that a lot of people would want someone to talk to. Except the partner, that you might not dare to talk with. Or you might think is embarrassing. If you have a conversation with someone about your sexual life, perhaps it is easier to come home and talk to your partner after that."* 

Physiotherapy was considered to improve sexual health via pain reductive treatment, and exercise interventions by improving physical function, joint mobility, and fatigue. Physiotherapy for persons with RA is often directed towards increasing the level of physical activity and it is important that physiotherapists appreciate that, according to patient's feedback, this can also be used to improve sexual health.

*"Physiotherapy is good to be able to keep mobile and strong and to give feelings of satisfaction. By physical exercise you feel pleased with your body. Otherwise you lose your desire…"* 

Experiences of positive feelings during physiotherapy and how those positive emotions can be of importance and enhance the effects of the physiotherapy interventions have been investigated (Gard 2000) but needs further exploration before being adopted for routine clinical use.

The results of the study lead to the conclusion, that physiotherapy can play an active role in improving sexual health for patients with RA according to the informants.

To further increase knowledge of the impact of RA on sexual health and how physiotherapy could affect it, a larger, second study was performed to complement the interview study (Josefsson & Gard, in print). This study was based on a new questionnaire, which was derived from the themes in the interview study and from earlier studies in the field (Josefsson and Gard 2010; Hill, Bird, and Thorpe 2003). Both men and women were included in this study so that possible gender differences could be explored. The results of this study show that a large majority of the patients agreed that there were strong connections between sexual health and pain, stiffness, fatigue, and physical function. Body image was affected by RA, but the study showed that the person's body image could be positively as well as negatively influenced after the diagnosis of RA. Most other studies have only shown a negative influence on body image of RA (Gutweniger et al. 1999). Although one study showed that body image did not affect sexual relationships for persons with RA (le Gallez 1993). The differences concerning the effect on body image by RA indicates that further

Sexual Health and Intimate Relationships in Rheumatoid Arthritis 223

a person with RA, have different competencies that in different ways can improve sexual health for persons with RA, depending on the type of sexual health problem that the individual has. The treatment models that will be brought up in this chapter are the role of physiotherapy to improve sexual health and increased communication and information

In order to improve sexual health via physiotherapy the interventions must be individually assessed and the needs of the interventions can change during the disease. A person that has had RA for several years might have more joint difficulties and functional limitations, than a person with newly diagnosed RA. Physiotherapy is usually directed towards improving activities of daily living, dealing with specific symptoms, such as pain or limited joint mobility, and sexual relations should be included in this context (Hewlett et al. 2005). Physiotherapy for persons with RA often consist of mobility exercises, pain reductive treatment and physical activities. Those interventions are often combined and changed over time in order to have optimal effect. Included in physiotherapy interventions is information about joint protection and how to achieve a healthy life style. Due to lack of research there is limited evidence as to whether many physiotherapy interventions have a beneficial effect(Vliet Vlieland 2007). However, regular physical exercise and encouragement to increase physical activity have been proven to be effective in decreasing symptoms in persons with RA (Brodin et al. 2008). The described positive outcomes of regular physical activities are improved physical function including increased muscle strength and endurance, aerobic fitness, and joint range of motion, as well as reduction of pain and fatigue (Cairns and McVeigh 2009; Cooney et al. 2011). For example, RA patients who exercise on a regular basis have less fatigue and disabilities compared to non-exercisers (Lee et al. 2006). Those positive effects of physical activities and regular exercise can enhance sexual health since the mentioned outcomes are affecting sexual health (Hill, Bird, and Thorpe 2003; Josefsson and Gard 2010). Physical activities can be coached directly by the physiotherapist in 2-3 sessions/week or by homebased programs where coaching is done by

phone or by follow-up visits at the physiotherapy clinic (Brodin et al. 2008).

Pain is a prioritized outcome for persons with RA and pain often affects sexual health negatively. Physiotherapy interventions aimed at pain reduction are common. The evidence of interventions such as TENS, acupuncture and massage is scarce due to few studies and

about sexual health issues.

Fig. 1. Improvement of sexual health

**5.1.1 The role of physiotherapy** 

research should be performed to increase knowledge of the phenomena. The sexuality of both the partner and the patient was affected by RA and the level of strain on the partnership caused by RA was similar in this study to results found in other studies, where for example 35% experienced that RA had to put a strain on their partnership in the study by Hill et al (Hill, Bird, and Thorpe 2003; Matheson, Harcourt, and Hewlett 2010). This study also concluded that health professionals and their RA patients did not communicate about sexual health, which supports previous research in this field (Ryan and Wylie 2005; Hill, Bird, and Thorpe 2003). This result stresses the importance of having a strategy in order improve communication concerning how to bring up sexual health in meetings between patients and health professionals. Additionally, health professionals need to be trained in dealing with sexual issues and communication about sexual health (Ryan and Wylie 2005) and they need to be aware of how they can assist patients in improving their sexual health. Physiotherapists also need to be aware that, in order to give best possible care, they should recognize that pain, fatigue, decreased joint mobility and impaired physical capacity can affect the sexual health of RA patients.

#### **5. How can sexual health be improved for persons with RA?**

There is very little evidence that the inflammatory process of RA influences the ability to engage in sexual activities, instead the problems appear to occur due to the symptoms of the disease, such as fatigue and pain. In order to investigate possible methods for improving sexual health in persons with RA, a literature review was performed by Areskoug-Josefsson & Oberg (2009). The review showed that research aiming to improve sexual health for patients with RA is scarce and only a few studies include specific recommendations. These recommendations were physiotherapy and improved communication. Communication concerning sexual health needed to be improved both between partners and between patient and health professionals. If patients with RA and health professionals communicate about sexual health, the health professionals get a broader view of how the disease affects the patient's life. Health professionals might think that persons with chronic diseases have more important subjects to discuss than their sexual health, but this must be the choice of the patient and not of the health professional. Health professionals could also inform the persons with RA that optimal treatment of the disease may reduce the sexual difficulties (Perdriger, Solano, and Gossec 2010). It is not always easy for persons with chronic illness to verbalise their sexual problems and it is important that health professionals acknowledge this and have skills in communication about sexual health (Kedde et al. 2010). Improved communication about sexual health often includes giving information such as how sexual health can be affected by RA, and how sexual health can be improved. Information, communication and physiotherapy should not be used as single interventions to improve sexual health, but in combination, in order to cover the full scope of the problem (Fig 1).

#### **5.1 Treatment models**

All members of rehabilitation teams should be involved in discussing and working towards improving sexual health with RA patients (Haboubi and Lincoln 2003; Couldrick, Gaynor, and Cross 2010; Post et al. 2008). The studies performed by the authors show that physiotherapists are important for improving sexual health in RA patients, and the authors believe that each of the various team members should be involved to provide the best possible care for patients. All of the health care professionals that are involved in the care of

research should be performed to increase knowledge of the phenomena. The sexuality of both the partner and the patient was affected by RA and the level of strain on the partnership caused by RA was similar in this study to results found in other studies, where for example 35% experienced that RA had to put a strain on their partnership in the study by Hill et al (Hill, Bird, and Thorpe 2003; Matheson, Harcourt, and Hewlett 2010). This study also concluded that health professionals and their RA patients did not communicate about sexual health, which supports previous research in this field (Ryan and Wylie 2005; Hill, Bird, and Thorpe 2003). This result stresses the importance of having a strategy in order improve communication concerning how to bring up sexual health in meetings between patients and health professionals. Additionally, health professionals need to be trained in dealing with sexual issues and communication about sexual health (Ryan and Wylie 2005) and they need to be aware of how they can assist patients in improving their sexual health. Physiotherapists also need to be aware that, in order to give best possible care, they should recognize that pain, fatigue, decreased joint mobility and impaired physical capacity can

There is very little evidence that the inflammatory process of RA influences the ability to engage in sexual activities, instead the problems appear to occur due to the symptoms of the disease, such as fatigue and pain. In order to investigate possible methods for improving sexual health in persons with RA, a literature review was performed by Areskoug-Josefsson & Oberg (2009). The review showed that research aiming to improve sexual health for patients with RA is scarce and only a few studies include specific recommendations. These recommendations were physiotherapy and improved communication. Communication concerning sexual health needed to be improved both between partners and between patient and health professionals. If patients with RA and health professionals communicate about sexual health, the health professionals get a broader view of how the disease affects the patient's life. Health professionals might think that persons with chronic diseases have more important subjects to discuss than their sexual health, but this must be the choice of the patient and not of the health professional. Health professionals could also inform the persons with RA that optimal treatment of the disease may reduce the sexual difficulties (Perdriger, Solano, and Gossec 2010). It is not always easy for persons with chronic illness to verbalise their sexual problems and it is important that health professionals acknowledge this and have skills in communication about sexual health (Kedde et al. 2010). Improved communication about sexual health often includes giving information such as how sexual health can be affected by RA, and how sexual health can be improved. Information, communication and physiotherapy should not be used as single interventions to improve sexual health, but in combination, in order to cover the full scope of the problem (Fig 1).

All members of rehabilitation teams should be involved in discussing and working towards improving sexual health with RA patients (Haboubi and Lincoln 2003; Couldrick, Gaynor, and Cross 2010; Post et al. 2008). The studies performed by the authors show that physiotherapists are important for improving sexual health in RA patients, and the authors believe that each of the various team members should be involved to provide the best possible care for patients. All of the health care professionals that are involved in the care of

affect the sexual health of RA patients.

**5.1 Treatment models** 

**5. How can sexual health be improved for persons with RA?** 

a person with RA, have different competencies that in different ways can improve sexual health for persons with RA, depending on the type of sexual health problem that the individual has. The treatment models that will be brought up in this chapter are the role of physiotherapy to improve sexual health and increased communication and information about sexual health issues.

Fig. 1. Improvement of sexual health

#### **5.1.1 The role of physiotherapy**

In order to improve sexual health via physiotherapy the interventions must be individually assessed and the needs of the interventions can change during the disease. A person that has had RA for several years might have more joint difficulties and functional limitations, than a person with newly diagnosed RA. Physiotherapy is usually directed towards improving activities of daily living, dealing with specific symptoms, such as pain or limited joint mobility, and sexual relations should be included in this context (Hewlett et al. 2005). Physiotherapy for persons with RA often consist of mobility exercises, pain reductive treatment and physical activities. Those interventions are often combined and changed over time in order to have optimal effect. Included in physiotherapy interventions is information about joint protection and how to achieve a healthy life style. Due to lack of research there is limited evidence as to whether many physiotherapy interventions have a beneficial effect(Vliet Vlieland 2007). However, regular physical exercise and encouragement to increase physical activity have been proven to be effective in decreasing symptoms in persons with RA (Brodin et al. 2008). The described positive outcomes of regular physical activities are improved physical function including increased muscle strength and endurance, aerobic fitness, and joint range of motion, as well as reduction of pain and fatigue (Cairns and McVeigh 2009; Cooney et al. 2011). For example, RA patients who exercise on a regular basis have less fatigue and disabilities compared to non-exercisers (Lee et al. 2006). Those positive effects of physical activities and regular exercise can enhance sexual health since the mentioned outcomes are affecting sexual health (Hill, Bird, and Thorpe 2003; Josefsson and Gard 2010). Physical activities can be coached directly by the physiotherapist in 2-3 sessions/week or by homebased programs where coaching is done by phone or by follow-up visits at the physiotherapy clinic (Brodin et al. 2008).

Pain is a prioritized outcome for persons with RA and pain often affects sexual health negatively. Physiotherapy interventions aimed at pain reduction are common. The evidence of interventions such as TENS, acupuncture and massage is scarce due to few studies and

Sexual Health and Intimate Relationships in Rheumatoid Arthritis 225

health is to be established with RA patients. In order to do so the experiences and views of the persons with RA on how health professionals should communicate about sexual health need to be brought forward. When communicating about sexual issues the views of the persons with RA on possible ways to improve sexual health are important, since sexual health is a sensitive subject on which to communicate. The health professionals must be sensitive to how and if the person with RA wishes to discuss sexual health during clinical encounters. If knowledge and competence in communication about sexual health is lacking for health professionals, it is likely that sexual health will not be brought up, even if the person with RA wants to discuss it. The communication problems between health professionals and persons with chronic illness concerning sexual health have been brought forward in earlier research (McInnes 2003; Haboubi and Lincoln 2003). Health professionals within the field of rheumatology rarely have expertise in the field of sexual health, which can make them unsure of how it should be included in their professional role and if/how they should communicate about sexual health. However, it is important to find ways to communicate about sexual health, since ignoring these concerns may damage sexual health

There are several possible reasons for the lack of discussion of sexual health by health professionals, such as: the sensitivity of the subject; the health professionals can be unsure on how to bring up the subject; being unsure of how they can support persons with RA having sexual health problems; and believing that somebody else in the health care team is responsible for discussing sexual health with patients (Couldrick, Gaynor, and Cross 2010; Stausmire 2004; Ryan and Wylie 2005; Bitzer et al. 2007). There can also be more practical reasons like lack of time or lack of privacy during the meeting between the patient and the health professional (Britto et al. 2000). One study (Haboubi and Lincoln 2003) examined the possible differences between different health care professionals concerning their ability to address sexual health with their patients. This study showed that all of the health professionals had similar reluctance in addressing the subject, but that physiotherapists and occupational therapists were the least likely to discuss sexual health with their patients (Haboubi and Lincoln 2003). The patients themselves might be unwilling to discuss sexual health, especially if they do not think that the health care professionals can offer any support (McInnes 2003; Bitzer et al. 2007). Additionally, they might believe that the onus is on the health professional to bring up the subject (Post et al. 2008). A way to show that sexual health is an accepted subject to discuss in clinical encounters is to have information leaflets

Patient preferences regarding whom they wish to communicate with about sexual health differ. A common choice is the nurse or the rheumatologist, but the personality of the health professional, and the feeling as to whether the subject is "allowed" is more important than the profession (Areskoug & Gard, unpublished). Earlier research (Taylor and Davis 2006) shows that patients prefer the health professionals to bring up the subject of sexual health first. Health professionals might also have pre-conceived opinions that can make communication about sexual health more difficult. For example, health professionals are more reluctant to discuss sexual health with patients from ethnic minority groups, nonheterosexual patients and older age patients (Couldrick, Gaynor, and Cross 2010; Gott et al. 2004). Most RA patients are initially diagnosed with RA in later life, which might be a reason why sexual health is not generally discussed with this group of patients. Research into health professional students has shown that they have a high level of discomfort

for persons with RA.

about the subject in the waiting room.

their poor methodological quality (Casimiro et al. 2002; Ying and While 2007; Cameron 2002). Despite the lack of evidence these interventions might be used and evaluated on the individual level with the aim to reduce pain. The interventions can also be aimed at improving sexual health; TENS could for example be used during sexual activities to reduce pain, but this also needs further research.

The level of physical activity can affect sexual health, since increased physical activity can improve the amount of sexual intimacy (Bortz and Wallace 1999; Post et al. 2008). Introduction of physical activities as well as coaching towards increased physical activity is a basic, but important part, of physiotherapy. Physiotherapy for persons with RA has been shown to improve self-confidence, the amount of daily activities and reduce and depression (Kavuncu and Evcik 2004; Areskoug-Josefsson 2006; Neuberger et al. 2007). When a person is confident about their physical ability this is reflected in a higher self-esteem, a more positive body image, and increased feelings of attractiveness (Josefsson and Gard 2010). All of which can affect sexual health in a positive way.

A higher amount of active leisure time activities decreases feelings of pain and fatigue, which can indirectly improve a person´s sexual health (Reinseth et al. 2010). And, not surprisingly, a person´s level of daily activities are positively correlated with sexual functioning (Monga et al. 1998), which implies the importance of encouraging persons with RA to adopt an active life in order to improve their sexual health. The level of physical fitness is also related to the level of sexual activities (Bortz and Wallace 1999), which is another indicator that it is important to involve physiotherapists and their expertise of coaching towards physical activity in rehabilitation for persons with RA. Physiotherapists regularly coach persons with RA towards being more physically active and to continue with physical activity after onset of the disease (Brodin et al. 2008), but the relation between sexual activity levels and physical activity levels shows that physical activity coaching should be done not only to improve physical fitness but also to improve sexual health.

Physiotherapy can also increase the choice of possible sexual intercourse positions by increasing joint mobility and muscle strength, and the patient's knowledge of their physical abilities. Different exercise positions that are involved in physiotherapy programs can inspire persons with RA to try new positions during sexual activities and encourage new sexual fantasies (Josefsson and Gard 2010). Examples of this could be exercises performed on all fours or exercises involving stabilization of pelvic region. Different coital positions put different levels of strain on joints and muscles. It is of value for physiotherapist to have a basic knowledge about this and to be able to answer questions of how joints and muscles are affected during sexual activities. Another key time for physiotherapists to work on and communicate about issues concerning sexual health is when patients have had joint surgery. Hip replacement surgery can of course affect positions during sexual activity. Similarly, shoulder surgery can affect hugging and caressing, as well as coital positions. Depending on the patient's preferences in their sexual life, their need for advice and their wish to communicate about sexual health differs, but the physiotherapist needs to be able to use their professional expertise concerning musculoskeletal issues, pain reduction and exercise interventions in order to provide the best care and information on sexual health matters.

## **6. Communication about sexual health**

Knowledge and openness about sexual health issues are important for rheumatology health professionals (Helland et al. 2011) and must be attained if good communication about sexual

their poor methodological quality (Casimiro et al. 2002; Ying and While 2007; Cameron 2002). Despite the lack of evidence these interventions might be used and evaluated on the individual level with the aim to reduce pain. The interventions can also be aimed at improving sexual health; TENS could for example be used during sexual activities to reduce

The level of physical activity can affect sexual health, since increased physical activity can improve the amount of sexual intimacy (Bortz and Wallace 1999; Post et al. 2008). Introduction of physical activities as well as coaching towards increased physical activity is a basic, but important part, of physiotherapy. Physiotherapy for persons with RA has been shown to improve self-confidence, the amount of daily activities and reduce and depression (Kavuncu and Evcik 2004; Areskoug-Josefsson 2006; Neuberger et al. 2007). When a person is confident about their physical ability this is reflected in a higher self-esteem, a more positive body image, and increased feelings of attractiveness (Josefsson and Gard 2010). All

A higher amount of active leisure time activities decreases feelings of pain and fatigue, which can indirectly improve a person´s sexual health (Reinseth et al. 2010). And, not surprisingly, a person´s level of daily activities are positively correlated with sexual functioning (Monga et al. 1998), which implies the importance of encouraging persons with RA to adopt an active life in order to improve their sexual health. The level of physical fitness is also related to the level of sexual activities (Bortz and Wallace 1999), which is another indicator that it is important to involve physiotherapists and their expertise of coaching towards physical activity in rehabilitation for persons with RA. Physiotherapists regularly coach persons with RA towards being more physically active and to continue with physical activity after onset of the disease (Brodin et al. 2008), but the relation between sexual activity levels and physical activity levels shows that physical activity coaching should be done not only to improve physical fitness but also to improve sexual health. Physiotherapy can also increase the choice of possible sexual intercourse positions by increasing joint mobility and muscle strength, and the patient's knowledge of their physical abilities. Different exercise positions that are involved in physiotherapy programs can inspire persons with RA to try new positions during sexual activities and encourage new sexual fantasies (Josefsson and Gard 2010). Examples of this could be exercises performed on all fours or exercises involving stabilization of pelvic region. Different coital positions put different levels of strain on joints and muscles. It is of value for physiotherapist to have a basic knowledge about this and to be able to answer questions of how joints and muscles are affected during sexual activities. Another key time for physiotherapists to work on and communicate about issues concerning sexual health is when patients have had joint surgery. Hip replacement surgery can of course affect positions during sexual activity. Similarly, shoulder surgery can affect hugging and caressing, as well as coital positions. Depending on the patient's preferences in their sexual life, their need for advice and their wish to communicate about sexual health differs, but the physiotherapist needs to be able to use their professional expertise concerning musculoskeletal issues, pain reduction and exercise interventions in order to provide the best care and information on sexual health matters.

Knowledge and openness about sexual health issues are important for rheumatology health professionals (Helland et al. 2011) and must be attained if good communication about sexual

pain, but this also needs further research.

of which can affect sexual health in a positive way.

**6. Communication about sexual health** 

health is to be established with RA patients. In order to do so the experiences and views of the persons with RA on how health professionals should communicate about sexual health need to be brought forward. When communicating about sexual issues the views of the persons with RA on possible ways to improve sexual health are important, since sexual health is a sensitive subject on which to communicate. The health professionals must be sensitive to how and if the person with RA wishes to discuss sexual health during clinical encounters. If knowledge and competence in communication about sexual health is lacking for health professionals, it is likely that sexual health will not be brought up, even if the person with RA wants to discuss it. The communication problems between health professionals and persons with chronic illness concerning sexual health have been brought forward in earlier research (McInnes 2003; Haboubi and Lincoln 2003). Health professionals within the field of rheumatology rarely have expertise in the field of sexual health, which can make them unsure of how it should be included in their professional role and if/how they should communicate about sexual health. However, it is important to find ways to communicate about sexual health, since ignoring these concerns may damage sexual health for persons with RA.

There are several possible reasons for the lack of discussion of sexual health by health professionals, such as: the sensitivity of the subject; the health professionals can be unsure on how to bring up the subject; being unsure of how they can support persons with RA having sexual health problems; and believing that somebody else in the health care team is responsible for discussing sexual health with patients (Couldrick, Gaynor, and Cross 2010; Stausmire 2004; Ryan and Wylie 2005; Bitzer et al. 2007). There can also be more practical reasons like lack of time or lack of privacy during the meeting between the patient and the health professional (Britto et al. 2000). One study (Haboubi and Lincoln 2003) examined the possible differences between different health care professionals concerning their ability to address sexual health with their patients. This study showed that all of the health professionals had similar reluctance in addressing the subject, but that physiotherapists and occupational therapists were the least likely to discuss sexual health with their patients (Haboubi and Lincoln 2003). The patients themselves might be unwilling to discuss sexual health, especially if they do not think that the health care professionals can offer any support (McInnes 2003; Bitzer et al. 2007). Additionally, they might believe that the onus is on the health professional to bring up the subject (Post et al. 2008). A way to show that sexual health is an accepted subject to discuss in clinical encounters is to have information leaflets about the subject in the waiting room.

Patient preferences regarding whom they wish to communicate with about sexual health differ. A common choice is the nurse or the rheumatologist, but the personality of the health professional, and the feeling as to whether the subject is "allowed" is more important than the profession (Areskoug & Gard, unpublished). Earlier research (Taylor and Davis 2006) shows that patients prefer the health professionals to bring up the subject of sexual health first. Health professionals might also have pre-conceived opinions that can make communication about sexual health more difficult. For example, health professionals are more reluctant to discuss sexual health with patients from ethnic minority groups, nonheterosexual patients and older age patients (Couldrick, Gaynor, and Cross 2010; Gott et al. 2004). Most RA patients are initially diagnosed with RA in later life, which might be a reason why sexual health is not generally discussed with this group of patients. Research into health professional students has shown that they have a high level of discomfort

Sexual Health and Intimate Relationships in Rheumatoid Arthritis 227

The website below contains information for persons who have had hip replacement surgery and gives information about recommended intercourse positions after hip replacement, as

Studies of health professional's attitudes towards discussing sexual health with their patients often show that they feel uneasy and that they lack training in how to bring up sexual health issues with their patients (Couldrick, Gaynor, and Cross 2010). To be able to communicate about sexual health in a respectful and open way it is fundamental to have established a trusting relationship with the patient and to know one´s own ability and limitations concerning issues of sexual health and intimate relationships. In order to ease and improve communication about sexual health, a communication model can be useful. In this section two different models will be introduced, the PLISSIT and the Recognition Model. Both models can be useful for health professionals working with persons with RA. The **PLISSIT model** has been used when discussing sexual health with patients with various physical and mental diseases. The PLISSIT model provides a graded counseling approach that allows health professionals to deal with sexual issues at their own level of

P-Permission: This step is the introduction of sexual health into the communication between the healthcare professional and the patient. Examples of permission giving could be having leaflets with information about how RA affects sexual health and intimate relationships in the waiting room. A permission giving attitude can also be shown by using the following question: "It is common that persons with RA experience difficulties with their sexual health. Would you like some information about this?" or "Many persons with RA experience concerns on how RA affects their sexual life. Do you have any questions or concerns about this?" By asking if the person with RA wants information or has questions about sexual health issues, it gives the person with RA the possibility to decline to discuss the subject if they wish to do so. Therefore this might be a more relaxed way to start the conversation, than with direct questions, such as: "Has your disease affected your sexual

LI- Limited Information: Information can be given about how the RA affects sexual health and about treatments that can increase sexual health. This could be done by handing out information leaflets or by providing information verbally about how your specific professional expertise can be of assistance. In this step it is important to have learnt what type of information the patient is interested in, instead of giving information that the health

SS – Specific Suggestions: This is a step with a problem solving approach. Suggestions might include: reading written material about sexuality and how it is affected by RA; taking pain medication before sexual activities; or advice on coital positions. The type of solutions that can be discussed in this step depends on the expertise of the health professional. For example, the physiotherapist can inform about positions that are less strenuous to the joints, the occupational therapist can give advice on planning daily activities in life (including

IT – Intensive Therapy: This level requires special training and is usually performed by a

sexual activities), and the rheumatologist can give advice concerning medication.

http://www.cks.nhs.uk/patient\_information\_leaflet/arthritis\_sexuality\_arc

well as information about which positions should be avoided.

comfort and competence (Annon 1974). The model includes four steps:

http://www.ranawatorthopaedics.com/faq-hip.html

**6.2 Communication models** 

life? In what way?"

professional think is relevant.

psychiatrist, psychologist or counselor.

concerning communication about sexual issues, which shows that it is not easier for younger or more recently educated health professionals to deal with this than it is for older, more established health professionals (Weerakoon et al. 2004).

There are gender differences showing that men have higher levels of sexual activity, interest in sex and better quality sex lifes, and that those gender gaps increase with age (Lindau and Gavrilova 2010). However a recent study of patients with RA showed that male gender was associated with a larger negative impact on sexual activity (Helland, Dagfinrud, and Kvien 2008), which indicates that this field needs further exploration. There are of course several other factors influencing sexual health and the perspective of gender on sexual health is complex (Vanwesenbeeck 2009), but most individuals with RA are women and the subject of sexual health needs to be discussed with a gender perspective since there are differences concerning how RA affects the sexual health of women and men. As examples, women often experience that feelings of intimacy are more important than sexual arousal (Basson and Schultz 2007), and women often have more joint pain during sexual activities (van Berlo et al. 2007). One possible reason for the increased pain for women during sexual activities could be differences in strain on joints in intercourse positions, but the reasons for this need further investigation. There are also gender differences concerning sexual satisfaction, with females with RA having lower sexual satisfaction than men with RA (Majerovitz and Revenson 1994). For younger women with RA, pregnancy can be an issue that needs to be discussed, since pregnancy can cause a remission of symptoms but this positive effect relapses in 90% cases within 6 months post-partum (Gerosa et al. 2008; Ostensen 1999). It is necessary to have strategies of how to deal with both men´s and women´s sexual health within the rheumatological team and to acknowledge the gender differences. There are also differences in the use of coping strategies between men and women with chronic pain. Women are more prone to use coping strategies such as ignoring and self talk and traditional coping strategies does not seem to be relevant for men concerning chronic pain and sexual functioning (Ruehlman, Karoly, and Taylor 2008). Those gender differences should be taken into consideration when communicating about sexual health with persons with RA.

There might be sexual health problems that are more difficult to discuss than others, for example fear of being left by the partner or feeling forced to have sexual activities. Therefore it is important to have knowledge of one´s limitations as a professional and to acknowledge when further expertise is needed in order to aid the person with RA.

#### **6.1 Information**

Information on the internet as well as patient-online-helplines can be of use. Several national organizations for persons with arthritis offer information about how intimate relationships and sexual life can be affected by RA. A recent investigation into a patient online helpline showed that 10% of the questions concerned sexual and reproductive issues (Richter et al. 2011). And for most RA patients a wide concept of sexual health, including social functioning and an emotional perspective, is more important than a more mechanical description of disease consequences on sexual health (Couldrick, Gaynor, and Cross 2010). The following websites contains useful information about sexual health, intercourse positions and intimate relationships for persons living with RA. They are written in an informative and open manner and are a useful resource for RA patients and their partners. http://www.arthritiscare.og.uk/PublicationsandResources/Relationshipsemotions

http://www.cks.nhs.uk/patient\_information\_leaflet/arthritis\_sexuality\_arc

The website below contains information for persons who have had hip replacement surgery and gives information about recommended intercourse positions after hip replacement, as well as information about which positions should be avoided.

http://www.ranawatorthopaedics.com/faq-hip.html

### **6.2 Communication models**

226 Rheumatoid Arthritis – Etiology, Consequences and Co-Morbidities

concerning communication about sexual issues, which shows that it is not easier for younger or more recently educated health professionals to deal with this than it is for older, more

There are gender differences showing that men have higher levels of sexual activity, interest in sex and better quality sex lifes, and that those gender gaps increase with age (Lindau and Gavrilova 2010). However a recent study of patients with RA showed that male gender was associated with a larger negative impact on sexual activity (Helland, Dagfinrud, and Kvien 2008), which indicates that this field needs further exploration. There are of course several other factors influencing sexual health and the perspective of gender on sexual health is complex (Vanwesenbeeck 2009), but most individuals with RA are women and the subject of sexual health needs to be discussed with a gender perspective since there are differences concerning how RA affects the sexual health of women and men. As examples, women often experience that feelings of intimacy are more important than sexual arousal (Basson and Schultz 2007), and women often have more joint pain during sexual activities (van Berlo et al. 2007). One possible reason for the increased pain for women during sexual activities could be differences in strain on joints in intercourse positions, but the reasons for this need further investigation. There are also gender differences concerning sexual satisfaction, with females with RA having lower sexual satisfaction than men with RA (Majerovitz and Revenson 1994). For younger women with RA, pregnancy can be an issue that needs to be discussed, since pregnancy can cause a remission of symptoms but this positive effect relapses in 90% cases within 6 months post-partum (Gerosa et al. 2008; Ostensen 1999). It is necessary to have strategies of how to deal with both men´s and women´s sexual health within the rheumatological team and to acknowledge the gender differences. There are also differences in the use of coping strategies between men and women with chronic pain. Women are more prone to use coping strategies such as ignoring and self talk and traditional coping strategies does not seem to be relevant for men concerning chronic pain and sexual functioning (Ruehlman, Karoly, and Taylor 2008). Those gender differences should be taken into consideration when communicating about sexual health with persons

There might be sexual health problems that are more difficult to discuss than others, for example fear of being left by the partner or feeling forced to have sexual activities. Therefore it is important to have knowledge of one´s limitations as a professional and to acknowledge

Information on the internet as well as patient-online-helplines can be of use. Several national organizations for persons with arthritis offer information about how intimate relationships and sexual life can be affected by RA. A recent investigation into a patient online helpline showed that 10% of the questions concerned sexual and reproductive issues (Richter et al. 2011). And for most RA patients a wide concept of sexual health, including social functioning and an emotional perspective, is more important than a more mechanical description of disease consequences on sexual health (Couldrick, Gaynor, and Cross 2010). The following websites contains useful information about sexual health, intercourse positions and intimate relationships for persons living with RA. They are written in an informative and open manner and are a useful resource for RA patients and their partners. http://www.arthritiscare.og.uk/PublicationsandResources/Relationshipsemotions

when further expertise is needed in order to aid the person with RA.

established health professionals (Weerakoon et al. 2004).

with RA.

**6.1 Information** 

Studies of health professional's attitudes towards discussing sexual health with their patients often show that they feel uneasy and that they lack training in how to bring up sexual health issues with their patients (Couldrick, Gaynor, and Cross 2010). To be able to communicate about sexual health in a respectful and open way it is fundamental to have established a trusting relationship with the patient and to know one´s own ability and limitations concerning issues of sexual health and intimate relationships. In order to ease and improve communication about sexual health, a communication model can be useful. In this section two different models will be introduced, the PLISSIT and the Recognition Model. Both models can be useful for health professionals working with persons with RA.

The **PLISSIT model** has been used when discussing sexual health with patients with various physical and mental diseases. The PLISSIT model provides a graded counseling approach that allows health professionals to deal with sexual issues at their own level of comfort and competence (Annon 1974). The model includes four steps:

P-Permission: This step is the introduction of sexual health into the communication between the healthcare professional and the patient. Examples of permission giving could be having leaflets with information about how RA affects sexual health and intimate relationships in the waiting room. A permission giving attitude can also be shown by using the following question: "It is common that persons with RA experience difficulties with their sexual health. Would you like some information about this?" or "Many persons with RA experience concerns on how RA affects their sexual life. Do you have any questions or concerns about this?" By asking if the person with RA wants information or has questions about sexual health issues, it gives the person with RA the possibility to decline to discuss the subject if they wish to do so. Therefore this might be a more relaxed way to start the conversation, than with direct questions, such as: "Has your disease affected your sexual life? In what way?"

LI- Limited Information: Information can be given about how the RA affects sexual health and about treatments that can increase sexual health. This could be done by handing out information leaflets or by providing information verbally about how your specific professional expertise can be of assistance. In this step it is important to have learnt what type of information the patient is interested in, instead of giving information that the health professional think is relevant.

SS – Specific Suggestions: This is a step with a problem solving approach. Suggestions might include: reading written material about sexuality and how it is affected by RA; taking pain medication before sexual activities; or advice on coital positions. The type of solutions that can be discussed in this step depends on the expertise of the health professional. For example, the physiotherapist can inform about positions that are less strenuous to the joints, the occupational therapist can give advice on planning daily activities in life (including sexual activities), and the rheumatologist can give advice concerning medication.

IT – Intensive Therapy: This level requires special training and is usually performed by a psychiatrist, psychologist or counselor.

Sexual Health and Intimate Relationships in Rheumatoid Arthritis 229

2. Referral on, when necessary. This step demands that the team members have

The field of sexual health and intimate relationships is moving forward within rheumatology. Advances include self-strategies and cognitive behavioural therapy within physiotherapy as ways to improve sexual health (Helland et al. 2011; Breton, Miller, and Fisher 2008). The self-strategies showed great variety including postponing sexual activities during flares, ignoring restrictions, adapting positions, using alternative locations, using painkillers, initiating less strenuous sexual activities, engaging in sexual activities despite lack of desire and being creative during the sexual act. The efficacy of the strategies is not researched and further knowledge is needed in this field. The initial results from cognitive behavioural therapy to improve sexual health are promising (Breton, Miller, and Fisher 2008), but needs further investigation. Research on ways of coping with RA are also of interest in relation to sexual health, since the decrease in sexual health seems to be persistent

Areas that need to be further researched within the field of sexual health and RA include: gender specific research; what are the differences between men and women in how RA affects sexual health? Which methods are most appropriate for improving sexual health

 the effects of physical activity and improved fitness on the sexual health of RA patients how to improve communication concerning sexual health between patients and health

Sexual health and intimate relationships need further attention among health professionals, since many individuals with RA have decreased sexual health which can affect their intimate relationships negatively, and thereby decrease their general wellbeing and overall happiness. Each profession has a professional expertise that can assist RA patients in this field. Optimal treatment of RA can decrease sexual health problems for persons with RA,

which physiotherapy interventions are most effective for improving sexual health.

Psychosexual counseling by a sexologist can be an option when expert advice or intensive therapy is needed. Research concerning psychosexual counseling for persons with chronic physical illness is scarce, but the results of the available studies are

knowledge of wider resources that might be of use to the patient.

planning of treatment and setting goals.

in men with RA and in women with RA?

the effects of disease modifying medication on sexual health

promising (Kedde et al. 2010).

**7. New research** 

during the disease.

**8. Future research** 

professionals

**9. Conclusion** 

therapist can assist in fatigue management and enabling meaningful activities, and the physiotherapist can use their skills in managing pain and addressing biomechanical issues. In order to simplify the different roles and competencies in the teams, a useful question is:" What can your profession offer in the field of sexual health that cannot be offered by other health professions?" This step includes analysis of sexual concerns,

This model also shows when the health professional needs to refer the patients to colleagues with more experience concerning sexual health, since the different steps clearly shows how far the discussion has reached. As a standard, persons with psychosexual problems should be referred to a psychosexual therapist, and persons with relationships difficulties should be referred to a counselor. For many patients the permission-step and the limited informationstep is sufficient to improve their sexual health (McInnes 2003). There is an extension of the PLISSIT-model, the EX-PLISSIT which includes reflection to raise self-awareness to challenge assumptions and requires review of all interactions with patients (Taylor and Davis 2006).

The core of the **Recognition Model** is the recognition that disabled persons have sexual needs and desires (Couldrick, Gaynor, and Cross 2010). The Recognition Model identifies the existing skills among health professionals that can be used to promote and protect sexual health for persons with disabilities and is intended to be used by multi-professional teams. The step of recognition is important, especially if the health professionals´ expertise is within disability, rather than sexual health. The Recognition model also aids in what is included in each professional role when it comes to addressing sexual health issues.

The steps in the Recognition model might overlap and it is important that the team ensures that all steps are included in the service given by the team around the patient. Sexual health issues should be employed with persons that express their sexuality in a different ways, not only with those persons that seem to be relevant, such as younger persons living in relationship with a partner of the opposite sex. Examples of persons expressing their sexuality in other ways can be persons who have chosen not to be sexually active or persons, persons having several partners or persons attracted to the same sex.

The following steps are described in the Recognition Model (Couldrick, Gaynor, and Cross 2010):


The first three steps can be performed by all team members.

1. Address issues that fit within the team´s expertise and boundaries. This step includes the specific competencies of different professionals, for example the occupational therapist can assist in fatigue management and enabling meaningful activities, and the physiotherapist can use their skills in managing pain and addressing biomechanical issues. In order to simplify the different roles and competencies in the teams, a useful question is:" What can your profession offer in the field of sexual health that cannot be offered by other health professions?" This step includes analysis of sexual concerns, planning of treatment and setting goals.

2. Referral on, when necessary. This step demands that the team members have knowledge of wider resources that might be of use to the patient. Psychosexual counseling by a sexologist can be an option when expert advice or intensive therapy is needed. Research concerning psychosexual counseling for persons with chronic physical illness is scarce, but the results of the available studies are promising (Kedde et al. 2010).
