Literature Review About Sexuality Support For Patients Nursing Essay
As is well documented the issue of sexuality has not been sufficiently well addressed within the context of Palliative Care (Butler et al 1998; Watkins et al 1998; Bourgeois-Law 1999; Stead et al 2002; Lemieux et al 2004).
Aim: This paper examines critically literature about sexuality support for patients with advanced disease and requiring Palliative Care (PC). The aim is to:
increase understanding of why gaps in the provision of sexuality support in PC exist.
explore how Healthcare Professionals (HP) might work within an Interdisciplinary Team (IT) to produce supportive relationships for PC patients and, thereby, enable more effective holistic care.
Methods : A literature search was performed using CINAHL, MEDLINE and The British Nursing Index, incorporating combinations of the words ‘sexuality’, ‘palliative care’ and ‘nursing’. A review of textbook holdings in the St Columba’s Hospice library was undertaken. Relevant articles were identified from the reference lists of papers identified in the literature.
Conclusion: A large volume of research recognises the need for improved approaches to the issue of sexuality. But precisely how needs further consideration and clarification. The majority attribute responsibility to nurses whilst recognising that further education and support from the IT is required. As things stand nurses are certainly not adequately equipped to manage patients sexuality needs. Research suggests models for use by nurses to assess patients. However, more research on these models and their application as well as general education on sexuality for the IT is required.
Introduction page 1
Literature Review Method
The Literature Review
Who is Responsible for Sexuality support in Palliative Care?
Assessment of Sexuality in Palliative Care
Management of Sexuality in Palliative Care
Gaps in the Literature
Collaborative Case Study
Many definitions of sexuality are provided within the literature. It is clearly not just the act of sexual intercourse. Searle (2005) suggests a broader definition could be the giving and receiving of love.
A number of factors can influence the sexuality of a PC patient ( ). Physical barriers can include impotence, lack of sexual drive due to medication, breathlessness, fatigue, pain, nausea/vomiting. Some of the organic reasons may be affected by emotional inhibitors. These may include change of self image, a loss of femininity/masculinity, a lowered sense of self worth and a change of self efficacy. Emotional connection is an integral part of sexuality (Lemieux et al 2004), taking precedence over physical expressions. PC patients struggle with a balance between closer engagement and disengagement in anticipation of the final separation between each other. Alongside the emotional needs of the patient it is equally important to address the partner’s well being (Vincent and Singh 2007) and the condition of the relationship. Corner states that:
A powerful impetus for PC has been the goal to relieve the symptoms and problems that accompany life limiting illness and are part of the process of dying. (Corner 2008, p. )
In this paper the author presents a critique of sexuality support for patients with advanced disease requiring PC. Recognising the parameters set foer this paper, the author has chosen to focus specifically on literature surrounding who is responsible for addressing sexuality. The paper reviews the importance of sexuality in PC; reasons why it may not be being addressed appropriately; and looks at ways in which we can move forward. The author analyses responses to a collaborative case study and identifies the key issues. The paper draws predominantly on evidence outwith the UK, which are relevant to HP’s working throughout the UK.
LITERATURE REVIEW METHOD
The literature review is of narrative type (Cronin et al 2008) that summarises the current state of knowledge to provide an accessible account of the topic. An initial search – over a ten year period – of the CINAHL, British Nursing Index and MEDLINE databases were made, using combinations of the words ‘sexuality’, ‘palliative care’ and ‘nursing’. The term ‘interdisciplinary team approach’ was identified in the literature and added. Relevant articles were also identified.
THE LITERATURE REVIEW
Why is Sexuality Poorly addressed in Palliative Care
There is considerable evidence that addressing the issue of Sexuality is important to both patients (Lemieux et al 2004; Katz 2005a; Hordern and Street 2007b; Hordern 2008; Redelman 2008) and their partners (Prez et al 2002; De Frost et al 2005; Ray and Street 2007; Hawkins et al 2009). It is also evident that patients and their carers were disappointed by the lack of information, support and practical strategies provided by the Healthcare Professionals (HP’s) to assist them to live with the sexual changes they experienced in the face of a life-limiting disease.
Current PC includes supportive care (NCPC 2007) the ethos of which is to enable people to live as well as possible, maximising the benefits of treatments (NICE 2004). Consequently, HP’s need to address patients PC needs both holistically and humanistically and managing the physical, psychological, social, emotional and spiritual aspects of living.
So why is sexuality so poorly addressed in Palliative Care? Lloyd-Williams (2008) says patients will not ask as they expect the HP’s will address the topic if appropriate. Patients are also reticent about sexual problems (Barraclough 1999). There has, however, been an increasing interest in sexuality from the patient perspective and more recent literature is starting to explore attitudinal barriers to HP’s discussing patient sexuality in the context of PC (Kuyper and Wester 1998; Hordern and Street 2007c; Hordern 2008; Llyod-Williams 2008; Redelman 2008).
Some of these barriers have been acknowledged. For example, HP’s believing that their discussions may be construed as disrespectful and inappropriate by the patient (Redelman 2008) or that HP’s considered the subject difficult to raise (Hautamaki et al 2007). Hautamaki (2007) proposes that the attitudes, values and constructions of sexuality of the HP all have an input on overt and covert messages used by HP’s. Their study identified lack of training of HP’s as the main reason for not discussing sexuality related issues. This was closely followed by lack of time.
Hordern and Street (2007c) showed that the majority of professionals used denial, ignorance or avoidance in addressing the intimate or sexual aspects of a patient’s life. They also showed there were mismatched expectations between HP’s and patients in cicommunicating about sexHP’s and patients in communicating about sexuality and the result was often reactive. This runs contrary to the Corner’s (2008) goal of PC referenced in the introduction. Perhaps the most important issue in this debate is that HP’s expect patients to initiate any discussion of this nature whilst the patients expect the staff to do the initiating.
Who is responsible for Sexuality Support in Palliative Care?
It emerges from the literature that the reticence to discuss sexuality with PC patients is not confined to nurses. Social workers equally find this a challenge (Neiman 2002) and recently physicians have also been open about this issue (Tan et al 2002; Hautomaki 2007). In Neiman’s (2002) study it is clearly thought to be the job of the Interdisciplinary team – So where does the responsibility lie?
Redelman (2008) states that sexuality needs to be brought up during PC by sexuality aware HP’s. She identifies that the HP needs to be able to explore with each patient their individual needs for their sexual expression. Unfortunately, Redelman (2008) does not identify who these ‘sexuality aware HP’s are. Katz (2005b) states that the HP must be adequately trained to assess problems in sexuality and to provide guidance.
Stausmire (2004) feels nurses are frequently in a position to establish relationships with couples that encourage a frank discussion and increased information sharing. Herson et al (1999) suggests this is because nurses perform very intimate procedures with patients.
Lemieux et al’s (2004) qualitative study investigated the meaning of sexuality to palliative patients . Within this small study the participants felt that sexuality should be addressed both earlier at the time of treatments and later when the illness is progressing. They all wanted the opportunity to discuss sexuality changes since diagnosis and felt that HP’s, including nurses and Physicians, are appropriate persons to initiate discussion around this topic. It is important to note that recruitment of the study ceased at 10 participants. Those who refused cited not feeling comfortable in speaking about the subject matter. This has authenticity implications. The limited number of subjects prevents generalisation of results to the entire PC population. In keeping with qualitative principles however there were sufficient numbers to saturate themes and address the goals of the study.
Hordern and Street (2007b) revealed, through interviewing, that most patients were searching for a patient centred style of communication from the HP of their choice. What was of importance was that it was someone who respected individuals. This correlates with Hordern and Street’s (2007a) findings from their study that interviewed both HP’s and patients. Despite these findings Hordern and Street (2007b) felt that this is a crucial role and well suited to nurses.
The Hautomaki et al (2007)’s study aimed to describe HP’s attitudes to and experiences of discussing sexuality-related issues with patients. 215 HP’s completed the questionnaire. HP’s regarded discussion about sexuality as part of their job. However, discussions on these issues are uncommon. 98% of the participants said they talked about sexuality issues with less than 50% of their patients and only 35% started the discussion on their own initiative – giving the main reason for this as lack of training. Perhaps the most pertinent point from the study is that amongst the nurses , 92% felt it was the treating physicians responsibility. The study reveals a clear discrepancy between treatment objectives and their implementation.
Some evidence points towards nurses having the role of addressing the issue of sexuality. There is, however, no clarity within the literature about who the responsibility lies with. Patients may, for example, want to discuss emotional, spiritual or practical problems with someone who is not involved in their physical care, or someone wearing a different label, such as a Chaplin or Counsellor or Social Worker. As a result, good PC can be delivered by the IT (Monroe 2004).
Assessment of Sexuality in Palliative Care
It is clear that HP’s don’t usually raise issues about sexuality; Hughes (2000) emphasised this barrier as a ‘silent co-existence’. To break the silence, HP’s must initiate the discussion with patients and their partners (Algier and Sultan 2008). So how can we achieve this?
Several authors suggest taking a sexuality history as part of assessment when working with couples facing end of life issues (Stausmire 2004; Katz 2005b; Panke and Ferrall 2010). A sample of one is provided in Appendix A. The feeling is that the tool avoids assumptions, establishing an unbiased description of the couples relationship. Stausmire(2004) however, identifies that the most difficult part of sexual history taking is establishing a relationship and, as identified earlier in the paper, this is a barrier for HP’s.
Rice (2000), through her philosophical literature, suggests nurses working in PC have a responsibility to ensure they have sufficient knowledge. She feels this will give them greater confidence. Hawkins et al (2009) examined changes in sexuality - after diagnosis and treatment of cancer - through conducting interviews with 20 partners of persons with cancer. The findings confirm Hordern and Street’s (2007a) and (2007c) studies that reported mismatched expectations and unmet needs in relation to HP’s and individuals with cancer, suggesting that further training of HP’s is required so they will be able to advise couples and meet their needs.
Katz (2005b) suggests addressing HP’s attitudes to sexuality via workshops and educating via textbooks. She also suggests incorporating sexual history taking and counselling needs into medical education. Hordern and Street (2007a) concluded their research by advocated a communication framework to encourage HP’s to move beyond personal assumptions and beliefs about patients sexuality. They do not, however offer insight into what format this would take.
Herson et al (1999) suggest nurse managers can encourage their staff in several ways to improve their level of comfort and knowledge in speaking about sexuality including education videos, written materials and role play. Hordern and Street (2007b) recommend the development and testing of an educational intervention incorporating a PC and negotiated approach to communication with patients.
Gamlin (2005) on the other hand provides a list of thoughts and fears of patients and partners. Woodhouse and Baldwin (2008) have summarised them into categories (Table 1). Assessing sexual issues can address the patients sexual concerns in terms of role and expectations (Cort et al 2004).
Although a range of assessment methods are identified in the literature it is clear that as the HP-patient relationship develops, sexual issues can be assessed throughout the illness process so that assessment is continuous, not a one off. It is clear that the work of the IT is important here as PC patients are likely to be in and out of hospital /hospice admissions.
Management of Sexuality in Palliative Care
Hawkins et al (2009) suggest the use of models of interventions to facilitate communication about sexuality between couples so that they will understand and feel confident about trying ‘alternative’ modes of sexual behaviour, without feelings of guilt or inadequacy.
Many of the writers discuss the use of Arinon’s (1976) PLISSIT model (Herson et al 1999; Tan et al 2002; Stausmire 2004; Gamlin 2005; Katz 2005b; Searle 2005) as a guide to discussing sexuality. This acronym stands for the models four progressive levels: Permission, Limited Information, Specific Suggestions and Intensive Therapy (Lemon 1993). While they act as a guide to initiate discussion, nurses and HP’s still require the knowledge about the topic in order to manage the issues. As identified earlier, knowledge in this area is lacking.
Lemieux et al (2004) and Panke and Ferrall (2010) suggest practical interventions that can address physical barriers. For example, provision of a private room and altering the hospital bed so the patient and partner can sleep together. If a door is shut or a curtain closed, HP’s need to consider patients privacy (Hordern and Currow 2003).
HP’s can legitimate sexuality by giving permission to couples to be physically intimate. The positive consequences of this may include an increased feeling of well-being on the part of the partner and closeness between the couple, which will have positive consequences for the physical and psychological wellbeing of the persons with the cancer (Hodges et al 2005). A n Interdisciplinary approach is the ideal for us to address the sexual needs of these patients and it’s important HP’s can identify when further help is required and refer to other agencies as appropriate (Williams 2001).
Gaps in the Literature
Gaps in the research and literature related to sexuality include lack of clarity about who is responsible for assessment and management. There is a lack of literature aimed at exploring and changing the culture of cancer and PC settings so that HP’s feel supported and encouraged to address patient issues of sexuality as a regular component of care. There is also a lack of research on the PLISSIT models used with PC patients.
In acknowledging lack of direction, the authors’ alluded to the difficulty in finding time to communicate about a topic which was not perceived as a priority by their culture. Each of these gaps highlight important consideration for future research.
COLLABORATIVE CASE STUDY
The author of this paper, a nurse in Palliative Care worked within the Interdisciplinary Team to analyse a case study (Appendix B) and then present a collaborative response. As a group, the Interdisciplinary Team identified the issues that impact on Kate and negotiated between the team an issue for each member of the team to focus on. The author chose sexuality and used her knowledge gained through the literature review to devise a response to support Kate and her family.
The case study tells us Kate has always taken pride in her appearance and she believes her physical deterioration has made her unattractive. It also states that her partner Dave is finding it difficult to be supportive of Kate and cope with her deteriorating health. As a Roman Catholic, Kate has mentioned sometimes she has sleepless nights thinking her disease is a punishment for her relationship with Dave. The above points are all issues that could potentially lead to sexuality issues for Kate due to changes in body image, her Catholic Faith and the changes in her relationship with Dave.
As the literature advises, the author will build up a relationship with Kate and her partner Dave and then allow them the privacy and timely opportunity to discuss their feelings. Recognising that this is not solely the responsibility of the nurse the author will liaise with the GP in relation to Dave’s coping and how he feels. The author advises if Kate wishes then she would refer her to a counsellor to explore her sexuality issues.
An Interdisciplinary approach, it is suggested, should be complemented by partnership working with the patient, family and wider community (Monroe 2005). As a member of the interdisciplinary team, the author contributed to the presentation of the collaborative response by...........
Although it might not be possible to resolve all the patients needs at least they should be given the opportunity to express whatever is of concern to them. If PC is about caring for the whole patient, all aspects of a patients life must be considered and, where possible, catered for (Wells 2002). It is essential that we become bold and brave and begin to explore this difficult yet essential area of care. Research must focus on how we can help and where differences can be made. There is also a role for education in making this topic acceptable to discuss in the classroom and with the patient.
This paper has explored some of the issues that enable sexuality to remain hidden. The author has identified the lack of clarity surrounding where the responsibility lies but recognises it primarily lies with nurses and physicians. Co-ordination of the PC team is important to ensure that sexuality is assessed and services are routinely offered by a member of the team and that additional services by a counsellor are available. Sexuality can remain hidden no longer. We all deserve better.
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