Releasing the Tension:

An Evaluation of the Impact of Complementary Therapies on People Living with, and Affected by, a HIV+ Diagnosis
Michael McCluskey, Joanne Sloane, and Ruari-Santiago McBride April 2013

Institute for Conflict Research North City Business Centre 2 Duncairn Gardens Belfast BT15 2GG April 2013 Tel: +44 (0)28 9074 2682 Email: info@conflictresearch.org.uk Web: www.conflictresearch.org.uk

Contents
Key findings Introduction Methodology Literature Review Research findings Recommendations References Appendices 3 4 5 6 12 21 23 24

Key findings
Key findings from an online survey of Positive Lifes client base, which received 59 responses.

Of the 52 respondents who had accessed aromatherapy: o 90% felt that it had a positive impact on their physical well-being; o 89% felt that is had a positive impact on their emotional well-being; o 93% felt that it had a positive impact on their psychological well-being; and, o 75% felt that it had a positive impact on their social well-being.

Of the 22 respondents that had accessed reflexology: o 91% felt that it had a positive impact on their physical well-being; o 91% felt that it had a positive impact on their emotional well-being; o 86% felt that it had a positive impact on their psychological well-being; and, o 78% felt that it had a positive impact on their social well-being.

93% stated that they would happily recommend the complementary therapies offered by Positive Life to another service user.

53% who access complementary and alternative medicines (CAMs) feel they have to wait long periods of time for an appointment.

33% of respondents would like greater access to complementary therapies than they currently have.

Introduction
Human Immunodeficiency Virus (HIV) is a pertinent public health issue within Northern Ireland. Compared to the rest of the UK, Northern Ireland had the largest proportional increase (332%) in new HIV diagnoses between 2000 and 2011 (PHA 2012). In 2012, there were 92 new diagnoses of HIV in Northern Ireland (PHE 2013). Advances in medical treatments and the development of highly active antiretroviral therapy (HAART) have greatly improved survival rates for those living with HIV. However, HIV remains a life-long chronic condition and prolonged medical treatment can have various negative side-effects (Montessori et al.2004). Positive Life is Northern Irelands only dedicated HIV support organisation (see Appendix 1). The organisation provides people living with and affected by a HIV+ diagnosis with information and support. In response to its service users needs Positive Life began offering complementary therapies. Complementary therapies were anecdotally found to alleviate some of the side effects of antiretroviral therapy, as well as helping those living with, and those affected by a HIV positive (HIV+) diagnosis come to terms with related issues, including stigma and stress. However, there is little evidence of the impact of complementary therapies for people living with or affected by HIV in terms of their physical, emotional, psychological and social well-being. This report was conducted by the Institute for Conflict Research (ICR) on behalf of Positive Life in order to evaluate the impact of complementary therapies (particularly aromatherapy and reflexology) on people living with a HIV+ diagnosis and those affected by such a diagnosis, including family members and partners. It is not a clinical study but rather a mixed-method investigation of the physical, emotional, psychological and social impact on the lives of those living with and affected by HIV. The report begins with an outline of the methodology. This is followed by a literature review and the presentation of the data collected for this report. It concludes with recommendations for Positive Life to increase the accessibility of complementary therapies.

Methodology
This piece of research was carried out on a voluntary basis by the ICR. The lack of financial resources and short time-frame (December 2012-March 2013) limited the scope of the project. The research therefore provides an introductory exploration of the impact complementary therapies have on people living with or affected by a HIV+ diagnosis. The methods employed by the researchers included an online survey and three focus groups. The online survey comprised of 10 questions that covered: demographics; accessibility of the complementary therapies offered by Positive Life; and, the impacts of therapies accessed on respondents well-being. The survey was distributed via e-mail to those who access the services of Positive Life. Those who were unable to access the survey online were given the option to complete a hard copy, which was available through Positive Life. Currently, there are 233 registered clients of Positive Life. In addition there are over 100 family members, partners and relatives of clients who have access to the range of services provided by Positive Life. In total, 169 surveys were sent out via email and 25 surveys were sent via post. Thirty-nine clients were not contacted as they had previously requested not to be included in mailings of any sort from Positive Life when registering as clients. In total, 59 responses were received (approximately 30%). Completed surveys were analysed using an online survey tool called Survey Monkey. In order to gain a qualitative understanding of how complementary therapies impact on people living with HIV, their family, friends and carers 3 focus groups were conducted. A total of 12 participants took part. The first focus group comprised of 2 therapists who offer complementary therapy treatments to clients who access Positive Life. The second group included 4 carers/friends/family members of those living with HIV. The final focus group involved 6 clients of Positive Life who all live with a HIV+ diagnosis. Each focus group was audio recorded with full informed consent of participants. Recordings were then transcribed and analysed by the research team. This research followed strict confidentiality protocols throughout to ensure participant confidentiality.

Literature Review
This chapter provides an overview of some of the key issues with regards to the impacts of living with HIV and accessing complementary therapies. It begins with a discussion of the background and contextual information pertaining to people living with, and affected by, HIV.

Human Immunodeficiency Virus (HIV)

Human Immunodeficiency Virus (HIV) is a blood-borne viral infection. Modes of transmission include sexual contact, the sharing of HIV-contaminated needles and syringes, and transmission from mother to child before, during or shortly after birth (PHA 2012). HIV targets the immune system and weakens the bodys surveillance and defence systems against infections. Immune function is typically measured by CD4 cell count. As the virus destroys and impairs the function of immune cells, people living with HIV gradually become immunodeficient. Immunodeficiency results in increased susceptibility to a wide range of infections and diseases that people with healthy immune systems can fight off. The most advanced stage of HIV infection is Acquired Immunodeficiency Syndrome (AIDS), which can take from 2 to 15 years to develop depending on the individual (WHO 2012).

Context
Data released by Public Health England reveals that in 2012 there were 92 new diagnoses of HIV in Northern Ireland, an increase from the 82 new diagnoses in 2011. This brings the total number of reported new HIV diagnoses in Northern Ireland to 953 since data has been recorded (PHE 2013). Although overall prevalence of HIV remains relatively low in Northern Ireland compared to the rest of the UK, it has the largest proportional increase (332%) of new HIV diagnoses between 2000 and 2011 in the UK (PHA 2012).

Treatment
There is no cure for HIV, however, the virus can be suppressed by combination antiretroviral therapy (ART) consisting of three or more antiretroviral (ARV) drugs. ART controls viral replication within a person's body and allows an individual's immune system to strengthen

and regain the capacity to fight off infections. With ART, people diagnosed with HIV can live healthy and productive lives (WHO 2012). In Northern Ireland, treatment is available on the National Health Service (NHS) and people living with HIV can expect to have a near normal life expectancy and live meaningful and active lives. However, prolonged antiretroviral therapy has been found to have significant adverse physical side-effects (Montessori et al. 2004).

Emotional, psychological and social well-being

Living with HIV can adversely impact an individual emotionally, psychologically and/or socially. The National Aids Map (NAM) states that HIV is highly stigmatised because many people have fears, prejudices or negative attitudes about the condition (NAM 2012). This stigma can result in people with HIV being insulted, rejected, gossiped about and excluded from social activities. Consequently, many people living HIV develop anxiety about disclosing their HIV status or avoid contact with other people altogether. This often leads to people suffering in silence instead of seeking the support they require. The National Aids Trust (NAT) also stress the importance of being aware of the emotional distress a HIV diagnosis can have on a person. As well as the on-going threat of contracting a life-threatening infection NAT discuss how many people: begin to fear death; face rejection from their family, friends, partners or colleagues; and experience anxiety of passing the virus on to a future partner or a current partner (NAT 2010; see Appendix 2). Receiving a HIV diagnosis can therefore have a detrimental effect on a persons emotional and mental well-being. NAT (2010) highlight evidence that suggests people living with HIV are more susceptible to mental health problems than the general population. Common mental health problems among people diagnosed with HIV include: anxiety, depression, addictions and post-traumatic stress disorder (NAM 2010). Consequently a HIV diagnosis may increase the chance that someone becomes suicidal (NAT 2010).

Complementary Therapies
Due to the combination of adverse side effects from antiretroviral therapy and the significant emotional and psychological challenges of living with HIV many HIV+ people utilise complementary therapies to improve their well-being (Kirksey, et al. 2002). Complementary therapies fall under the umbrella term of complementary and alternative 7

medicine (CAM). Definitions of CAM can vary across different cultures and contexts, in the UK CAM is used to refer to a group of therapies or healing practice that does not fall within the realm of conventional medicine (SEFF 2011). Complementary therapies are used for a wide range of purposes, including preventing and treating illness as well as to promote health and well-being. Such therapies are often used to complement mainstream medicine by contributing to a common whole, satisfying a demand not met by conventional practices. Berman (1997) suggests that complementary therapies such as reflexology and aromatherapy are widely accepted within the UK and are recognised by the NHS, many GPs and hospices throughout the country. Primary care organisations often have specific policies on the extent to which their patients can have access to CAMs. GPs are responsible for referring patients to CAMs and the decision is made based upon the best interest of each patient. Many complementary therapists are self-employed and work in the private sector. Few CAM practitioners are regulated by statute rather they are expected to be members of a reputable independent or voluntary regulatory body, who set standards for qualifications, design codes of practice and require public indemnity insurance.

Aromatherapy
Aromatherapy is a therapy that uses essential oils in holistic treatments to improve physical and emotional wellbeing. Essential oils are extracted from plants, including lavender, rose, sage, and bergamot, and used to relieve stress for a variety of chronic conditions. Each essential oil has a particular use and is administered depending on the specific needs of the client. For example, some might stimulate or regulate metabolic function while others will ease anxieties or relieve stress. Aromatherapy is a recognised complementary therapy and has been described as one of the fastest growing complementary therapies in the world (SEFF 2011).

Reflexology
Reflexology involves the practice of massaging or pushing on parts of the feet, or sometimes the hands and ears, with the aim of encouraging a beneficial effect on other parts of the body and to improve general well-being (SEFF 2011). As well as helping with the physical well-being of a client, Reflexologists use this technique to break up patterns of stress and have a positive impact on a clients emotional and psychological health. Despite the 8

perceived benefits of reflexology it is currently not fully endorsed by the NHS because there is little evidence that prove its clinical effectiveness.

Benefits of complementary therapies for people living with HIV

Use of complementary and alternative medicine (CAM) is prevalent among HIV+ individuals despite the success of antiretroviral treatments (Littlewood and Vanable 2008). Research by Fairfield et al. (1998) found that between 35% and 40% of people affected by HIV use some form of complementary therapy in conjunction with conventional medicine. People who do access these therapies are likely to attend them more than they actually visit their physicians and nurses. Despite the seemingly high usage of complementary therapies among people living with HIV there currently is very limited evidence of the clinical benefits of complementary therapies for people with a HIV+ diagnosis. Buckle (2002) suggests that it is important to consider that one of the fundamental benefits that complementary therapies offers is the alleviation of stress. Prolonged or excessive stress levels can suppress a persons immune system. It is therefore important that people living with HIV, who are more susceptible to opportunistic infections, manage their stress levels effectively. Complementary therapies that help a person to reduce their stress may therefore positively affect the immune system and play a role in the overall healthcare plan of someone living with HIV. Research conducted by Shar-Posner et al. (2004) investigated the benefits of massage for young children aged between 2-8 years who were living with HIV and did not have access to anti-retroviral medication. This work analysed the impact of therapeutic massage on a group of young children compared to another group who did not receive the treatment. It concluded that massage may be a valuable treatment to help maintain immunocompetence (the ability of the body to produce a normal immune response following exposure to an antigen anti-bodies) in thousands of children worldwide who cannot access the appropriate medication. The conclusion was made due to the extensive loss of lymphocyte (type of white blood cell) in children who did not access the massage treatment compared to those who did. Although in this example massage was used as an alternative rather than complementary to medicine, it is evidence that complementary therapies can positively impact a persons immune system.

Many people living with HIV experience physical pain, which can also be exacerbated by antiretroviral therapy. Therapies such as aromatherapy massage and acupuncture have been documented to help reduce procedural pain especially among cancer patients (Deng and Cassileth 2005). As physical pain varies from each individual it is difficult to assess the exact impact complementary therapies may have on people living with HIV, and the lack of research may be an indicator of this difficulty. For people living with HIV the skin is often badly affected by conditions such as seborrhoeic dermatitis, atopic dermatitis, psoriasis, Kaposis sarcoma and drug-induced eruptions. The carrier oils used in aromatherapy have a beneficial effect on the skin and should be used in conjunction with the essential oils to trigger natural homoeostatic principles in the body to create a healing process (Price and Price 2011). For the vast majority of people who access complementary therapies, experience positive effects following treatment with many reporting an improvement in their mood, symptoms, energy levels or general health and well-being. However, some clients may experience adverse effects or a less positive response than others. Adverse responses are typically emotional in nature, such as feeling anxious, tearful or sad. Others may experience unexpected or unwanted physical responses, such as changes in urination (colour or frequency), headaches, fatigue, stiffness, disturbed sleep, shivering, bowel disturbances, dizziness, or a recurrence of an old pain that may have been dormant for some time. Although infrequent, such responses are considered to be part of a natural healing response (FHT 2013; see Appendix 3). There is currently little research evidence of the physical impact complementary therapies have on people living with HIV but the work that has been carried out seems to portray positive results. The Department of Health, Social Services and Public Safety (DHSSPS) commissioned a pilot scheme in relation to integrating complementary medicine into primary care services in Northern Ireland. The report used Measure Yourself Medical Outcome Profile (MYMOP) to analyse the efficiency of complementary therapies, the results outlined that 81% of respondents noted an improvement in their physical well-being (McDade 2008). Besides this general pilot scheme in Northern Ireland which assessed a

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range of complementary therapies there remains a lack of information regarding the experiences of people who access complementary therapies.

Conclusion
HIV is a pertinent public health issue in Northern Ireland. Universal access to antiretroviral therapies can help people living with HIV to live a long and productive life. However, prolonged antiretroviral therapy can have various negative side-effects, which combined with the profound emotional, psychological and social repercussions of receiving a HIV+ diagnosis; can greatly reduce a HIV+ persons quality of life. Complementary therapies, when used in tandem with antiretroviral therapies, may be beneficial for people living with HIV by reducing stress levels, alleviating pain and improving skin conditions that commonly arise.

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Research Findings
The following section is an outline of the analysis from an online survey completed by 59 respondents who access Positive Life complementary therapies. This section will also include an analysis from a series of focus groups carried out with complementary therapists (2), service users (6), and carers/friends/family members of the service users (4). The findings have been analysed and outlined below within the categories of: demographics, accessibility, the impacts of complementary therapies on the clients well-being, and qualitative findings.

Demographics
Out of the 59 respondents who completed the online survey, 90% were male and 10% were female. This reveals a small disparity in relation to the general population of people living with HIV in Northern Ireland. The latest statistics from the Health Protection Agency in June 2012 conveyed that the population breakdown was 76% male and 24% female. Trust Area Belfast South Eastern Northern Southern Western
Table 1: Health and Social Care Trust Areas

Number 33 14 5 5 1

Percentage (%) 57 24 9 9 2

Table 1 shows that the majority of respondents (57%) live in the Belfast Health and Social Care Trust area. Positive Life is situated in Belfast city centre and this may explain why there was greater engagement from the greater Belfast area. The second highest population area was the South Eastern Health and Social Care Trust (24%) which encompasses council areas such as; Newtownards, Down, North Down, and Lisburn. The Western Health and Social Care Trust had the least representation as only 2% had completed the anonymous online survey, the remaining percentage of respondents was shared equally between the Northern and Southern areas both equating to 9%.

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As this research focused on the impacts of complementary therapies (provided by Positive Life) for people living with and, affected by HIV, the survey asked each respondent what their connection to Positive Life was. Findings from the survey showed that 93% of the respondents were service users and 7% were either carers/family/friends of someone living with HIV in Northern Ireland. These statistics show that although there are a greater proportion of clients with HIV who access the therapies, there is still a further demand from family members, friends, and carers to be able to access these treatments. One complementary therapist stated that: The primary carer does all the support when we are not there, so it just seems right and natural to support the carer. A carer from a focus group also highlighted the importance of the services provided by the complementary therapists: I have someone I can talk to about any concerns I have, be they trivial or more major.

Accessibility
Although the focus of this research was aromatherapy and reflexology, it was felt necessary that respondents to the questionnaire were given the opportunity to list all the complementary therapies they accessed through Positive Life.
Therapy Aromatherapy Indian head massage Reflexology Reiki Therapeutic massage No 15% (8) 63% (22) Yes (once) 2% (1) 14% (5) Yes (2-5) 7% (4) 20% (7) Yes (6-10) 19% (10) 3% (1) Yes (10+) 57% (31) 0% (0)

64% (25) 60% (22) 31% (14)

3% (1) 11% (4) 7% (3)

23% (9) 22% (8) 16% (7)

8% (3) 8% (3) 11% (5)

3% (1) 0% (0) 35% (16)

Table 2: Have you accessed any of the following therapies provided by Positive Life?

Table 2 shows that aromatherapy and the use of essential oils was noted as the most popular complementary therapy accessed by clients at Positive Life, with 57% of respondents reported to have used aromatherapy ten or more times. Therapeutic massage 13

had the next highest usage with 36% of respondents having used this particular therapy ten or more times. The continued usage of these therapies by a large proportion of those who access them is a strong indicator that these clients find them beneficial. It was also felt important to gain a clearer understanding of why individuals do not avail of the therapies offered by Positive Life. Response I was not aware Positive Life offered these treatments I do not think they would be of benefit I have difficulty accessing these treatments Other, please specify
Table 3: If not, why have you not used these treatments?

% 52% 23% 13% 19%

Table 3 shows that a lack of knowledge about the treatments offered by Positive Life was the most common reason people do not use them, with 52% of respondents not being aware of the full range of complementary therapy treatments available to them through Positive Life. This suggests that Positive Life could do more to promote the full range of services they offer to their service users and in particular those recently introduced therapies, i.e. reflexology and Indian head massage. Twenty-three per cent of respondents did not think that they would benefit from receiving the complementary therapies on offer. Travel issues and accessibility to the treatments also appear to be a concern for respondents with over 13% of individuals have problems with distance and financial factors even though the therapies are currently offered free of charge by Positive Life. Nineteen per cent of respondents indicated other reasons for not accessing the complementary therapies on offer by Positive Life. The main other reasons for not accessing therapies where travel issues and getting time off work to attend appointments. This also suggests that although some people wish to access complementary therapies they are unable to do so. Survey respondents who had accessed complementary therapies were asked to reflect on the availability such services.

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Response I have to wait long periods of time for an appointment I would like to have greater access than I currently have I am happy with the access I have It is too far for me to travel to appointments I do not use any of the complementary therapies

% 53% 33% 30% 7% 7%

Table 4: Which statement best reflects your view of the access to complementary therapies that Positive Life currently offer?

Table 4 shows more than half (53%) of respondents noted that they had to wait long periods of time for an appointment. One third (33%) of respondents noted that they would like to have greater access to complementary therapies than they currently have. This suggests there is currently greater demand for CAMS than Positive Life is currently available to provide many of its clients. However, 30% of respondents stated that they are currently happy with the amount of therapy they receive. Availability for appointments is an issue for a number of clients who work during the day time. A service user discussed in a focus groups that they had been unable to access complementary therapies because there are usually no appointments after working hours (5.00pm). In attempt to overcome this accessibility barrier Positive Life has recently extended their opening hours on a Monday evening until 8pm for a range of services, including the introduction of Indian head massage treatments, however some respondents may not have been aware of this.

Impact of aromatherapy and reflexology on well-being

Survey respondents were asked to state what impact the complementary therapies they had accessed through Positive Life had on their well-being. First they were asked what impact aromatherapy had on their physical, emotional, psychological and social well-being.

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Very Positive Physical (e.g.: energy levels) Emotional(e.g.: happy/sad) Psychological (e.g.: stress levels/mental health) Social(e.g.: relationships/ interactions with others) 33% 71% 64% 61%

Positive

No Impact

Negative

Very Negative

No. of Responses 51

29%

8%

2%

0%

25%

10%

0%

2%

52

22%

6%

2%

0%

51

42%

21%

4%

0%

52

Table 5: How has aromatherapy (accessed from Positive Life) impacted on your well-being?

Table 5 shows that of the 52 respondents who had accessed aromatherapy, 90% felt that it had a positive or very positive impact on their physical well-being; 89% felt that is had a positive or very positive impact on their emotional well-being; 93% felt that it had a positive or very positive impact on their psychological well-being; and 75% felt that it had a positive or very positive impact on their social well-being. Only one respondent felt that aromatherapy had a very negative impact on their emotional well-being (see Appendix 3). Overall, the responses to this question highlighted that the overwhelming majority of people who had accessed aromatherapy through Positive Life found it beneficial for their physical, emotional, psychological and social well-being. Next, respondents were asked what impact reflexology had on their physical, emotional, psychological and social well-being.

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Very Positive Physical (e.g.: energy levels) Emotional(e.g.: happy/sad) Psychological (e.g.: stress levels/mental health) Social(e.g.: relationships/ interactions with others) 46% 59% 50% 55%

Positive

No Impact

Negative

Very Negative

No. of Responses 22

36%

5%

5%

0%

41%

5%

5%

0%

22

27%

9%

5%

0%

22

32%

18%

5%

0%

22

Table 6: How has reflexology (accessed from Positive Life) impacted on your well-being?

Table 6 shows that of the 22 respondents that had accessed reflexology 91% felt that it had a positive or very positive impact on their physical well-being; 91% felt that it had a positive or very positive impact on their emotional well-being; 86% felt that it had a positive or very positive impact on their psychological well-being; and, 78% felt that it had a positive or very positive impact on their social well-being. One respondent reported that reflexology had a negative impact on their sense of well-being (see Appendix 3). Overall, the responses received that the overwhelming majority of survey respondents felt that reflexology had a positive or very positive impact on their physical, emotional, psychological and social wellbeing. Respondents were also asked if they would recommend complementary therapies to other people. Of those who had accessed complementary therapies 93% stated that they would happily recommend the complementary therapies offered by Positive Life to another service user, carer or family member of someone living with a HIV+ diagnosis. This further illustrates the high level of satisfaction Positive Lifes clients have with the complementary therapies they receive.

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Qualitative responses
Survey respondents were asked to write in their own words the impact complementary therapies had on their lives. In addition, focus groups were conducted to gain qualitative insights into the impacts that complementary therapies have on the lives of Positive Lifes clients. As previously discussed in the literature review, a HIV+ diagnosis can have a detrimental effect on a persons mental health due to the social stigma that surrounds a HIV+ status. During a focus group one interviewee explained how living with HIV makes: You feel untouchable and ostracised from society. Survey respondents and interviewees discussed how complementary therapies were beneficial for helping to relieve physical pain: It really helps me keep mobile and it keeps things less painful, it benefits me physically and helps with my joints. I have problems with my elbows and wrists and it really helps with that. I suddenly realised that the pain was gone and its like a buzzing in the background, you dont notice it until its gone and as well as feeling better in terms of relaxation, I feel physically better, the number of painkillers that I took that day was greatly reduced. Survey respondents and interviewees also highlighted the positive benefit complementary therapies have on their mental health. Individuals particularly noted that the benefits that complementary therapies had in terms of clearing their head, promoting hope and helping them challenge negative thought processes regarding their condition: ...in the immediate days after my treatment I feel my thoughts are clearer and its only after coming here that I realised my condition is not a death sentence. My friends and family have noticed that I have been more positive thinking in general but they dont know what is actually wrong with me. Massage helps me when I cant face the day. Survey respondents and interviewees also highlighted the social impact that complementary therapies have had on their lives; they noted in particular how they contributed significantly to helping them with their day-today living, confidence levels and thus enabled them to 18

develop new friendships. Complementary therapy is often a gateway service where clients can build confidence and trust, and begin to adjust to and talk openly about their diagnosis in a safe and stress free environment: The best thing for me is that I can get the everyday things done after receiving treatment, i.e.; I feel more confident going shopping and being among other people, I feel relaxed and I dont worry as much. Complementary therapies here give you that bit of strength to face a lot of things in your day to day living, especially in the immediate days following the therapy. I talk completely openly with no problems. Relaxation was found to be a major benefit for service users, with 63% of survey respondents stating in some way that during and after their complementary therapy session that they felt more relaxed or that the therapy allowed them to de-stress and achieve a calm state of mind: [It was a] tremendously relaxing experience. I just found it released the tension of everything. I cannot say enough about how massage helps me emotionally, psychologically and physically. Survey respondents and interviewees noted that part of the benefits of complementary therapies was the security of the environment and the approach of the therapists themselves: It is a very safe place and this may sound wrong but you feel as if you are among your own people. You are treated like a human being and there is a trust there that is crucial. I dont feel safe anywhere else at the minute apart from here where I feel Im in a safe and secure environment- it helps my mindset. One particular theme that continually re-occurred was the issue of touch. Clients often report feelings of dirtiness or infectiousness which manifest as a result of both external and internalised stigma resulting in feelings of rejection, isolation, low self esteem, and ultimately poor mental health. Complementary therapies were experienced as a way of 19

breaking down and reducing the impact of internalised stigma with a number of clients highlighting the significance, meaning and therapeutic value they attached to what was considered a very powerful healing experience: Its the physical, skin on skin touch that someone is willing to give. Ive been with my partner for 10 years but since I was diagnosed two years ago there has been no physical contact.... The only contact I receive is from my therapist. The touch can communicate where words cant. Having that hour with someone touching you and connecting with you means something different than just the physical act. The issue of touch was briefly discussed in the literature review, and the research findings have further highlighted how important skin on skin touch is, for some interviewees receiving aromatherapy and reflexology, this was the only time they had been touched by another person. This again highlights the importance of touch for people who live with a HIV+ diagnosis. A number of respondents mentioned that receiving therapies allowed them to sleep easier the following few days after a treatment. It was also noted that the use of medically prescribed sleeping aids was greatly reduced: I keep thinking to myself... If I was able to have these treatments a bit more would it get me on the right path quicker and maybe off some of my other tablets. The day of my treatment and the following days after it I dont have to take my sleepers (prescribed sleeping aid medication).

Conclusion
The self-reported experiences presented in this chapter highlight the benefits that complementary therapies can have on the lives of people living with and affected by HIV. Respondents overwhelming reported that accessing aromatherapy and reflexology had a positive or very positive impact on their physical, emotional, psychological and social wellbeing. In particular, complementary therapies were found to relieve pain, reduce stress levels, help people to relax, improve peoples capacity to sleep, enable people to socialise better as well as to enable them to overcome some of the challenges created by social 20

stigma. This broad range of potential benefits suggests that complementary therapies have the ability to greatly improve the quality of life for people living with and affected by HIV, through alleviating some of the side-effects of prolonged antiretroviral therapy, promoting a greater sense of psychological well-being and reducing the risk of further psychological distress: [Complementary therapies] have great benefits to my mental well-being. I talk to my massage therapist about how Im feeling. It is one of the few times that I actually talk about my status. The benefits of physical touch have helped me develop a bond with my therapist, which helps me to be a lot more open about my feelings and emotional well-being. All of these things coupled with the relaxing and stress relieving benefits of a massage help me enormously. Also the crossover with other clients has led me to meet other people with HIV who I wouldnt have otherwise met (Service user).

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Recommendations
This research found complementary therapies to be hugely beneficial for the physical, emotional, psychological and social well-being of people living with or affected by HIV. Based on these findings it is pertinent that Positive Life increase the accessibility of the complementary therapies:

1. Positive Life should periodically advertise the availability of the complementary services it offers to new and existing clients. Such advertisements should include a description of the available therapy, expected benefits and testimonies of existing service users. 2. Positive Life should increase the availability of complementary therapies to its clients. This would require increasing the frequency of available complementary therapies sessions as well as offering sessions during the evenings and weekends. 3. Positive Life should explore the possibility of providing complementary therapy sessions outside of the Belfast area in order to ensure that all service users, regardless of their geographical location, have access to the services they offer. If this proves to be unfeasible Positive Life should seek to reimburse the travel costs of people accessing the complementary therapies from outside the Belfast Health and Social Care Trust. 4. Positive Life should continue to monitor and evaluate service users usage and experiences of their services in order to ensure they continue to meet their clients needs.

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References
Berman, B. M. (1997) The Cochrane Collaboration and Evidence-Based Complementary Medicine. The Journal of Alternative and Complementary Medicine 3(2): 191-194 Buckle, J. (2002) Clinical Aromatherapy and AIDS. The Journal of the Association of Nurses in AIDS Care 13(3): 81-99. Deng, G. And Cassileth, B.R. (2005) Integrative Oncology: Complementary Therapies for Pain, Anxiety, and Mood Disturbance, in A. Cancer Journal for Clinicians 55: 109-116. Fairfield, K. M., Eisenberg, D. M., Davis, R. B., Libman, H., Phillips, R.S. (1998) Patterns of use, expenditures, and perceived efficacy of complementary and alternative therapies in HIV-infected patients, in Archives of Internal Medicine158 (20):22572264. Kirksey, K. M., Goodroad, B. K., Kemppainen, J. K., Hoilzemer, W. L., Bunch, E. H., Corless, I. B., Eller, L. S., Nicholas, P. K., Nokes, K. and Bain, C. (2002) Complementary Therapy Use in Persons with HIV/AIDS, in Journal of Holistic Nursing 20 (3): 264-278. Littlewood, R. A. and Vanable, P. A. (2008) Complementary and Alternative Medicine Use Among HIV+ People: Research Synthesis and Implications for HIV Care, in AIDS Care 20(8): 1002-1018. Montessori, V., Press. N., Harris, M., Akagi, L., Montaner, J. S. G. (2004) Adverse Effects of Antiretroviral Therapy for HIV Infection, in CAMJ 170 (2): 229-238. NAM (2010) HIV, Mental Health and Emotional Wellbeing (Third edition). London: National AIDS Map. NAM (2012) HIV, Stigma and Discrimination (Third edition). London: National AIDS Map. NAT (2010) Psychological Support for People Living HIV. London: National AIDS Trust. PHA (2012) HIV Surveillance in Northern Ireland 2012: An Analysis of Data for the Calendar Year 2011. Belfast: Public Health Agency. PHE (2013) Northern Ireland New HIV diagnoses to end of December 2012. Available at: http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1237970256421 [Accessed on 07/04/2013]. Price, S. And Price, L. (2011) Aromatherapy for Health Professionals (4th edn). Churchill Livingstone: Elsevier. SEFF (2011) An Evaluation of the Effectiveness of Complementary Therapies on Trauma Related Illnesses. Belfast: Community Relations Council. Shor-Posner, G., Miguez, M., Hernandez-Reifm, M., Perez-Then, E., and Fletcher, M. (2004) Massage Treatment in HIV-1 Infected Dominican Children: A Preliminary Report, in Journal of Alternative and Complementary Medicine. 10(6): 1093-1095. WHO (2012) HIV/AIDS Factsheet No. 360.Geneva: World Health Organisation

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Appendix 1
Positive Life provides support for individuals living with a HIV positive diagnosis their families and their carers in Northern Ireland. Locally known as The Centre, Positive Life has been making a difference to the quality of peoples lives for over 25 years, beginning life as the AIDS Telephone Helpline in 1986 and now located in Belfast city centre. Positive Life offers a range of services and support expanding across Northern Ireland, including the border areas of the Republic of Ireland. In order to reflect the changing face of HIV and the advancements in HIV treatment which have resulted in HIV no longer being the death sentence it once was, it is now seen as a long term chronic condition; the AIDS Helpline Northern Ireland was in June 2002 re-launched and renamed as The HIV Support Centre and most recently in 2012 was rebranded and relaunched as Positive Life. Positive Life is the only dedicated HIV support organisation in Northern Ireland where people living with and affected by HIV can access support and information. Positive Lifes services include: one to one support; confidential helpline; information and signposting; telephone support service; free safer sex pack provision; women's support group; men's support group; counselling; advocacy; return to work/ return to learning support; life coaching; expert patients programme; family and friends support group; parent and toddler group; benefits clinic; art therapy; drop in; residential; a wide range of complementary therapies; including aromatherapy, reflexology, therapeutic massage and Indian head massage. All of which provide a much needed and important support service for the people of Northern Ireland who are living with and affected by HIV. Positive Life is currently offering complementary therapies free of charge for their service users.

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Appendix 2
The story below is from an anonymous client who documents their experience of living with a HIV diagnosis.
Anonymous clients story:

Diagnosed HIV positive in the 1980s, a time of fear, anxiety and ignorance with regard to this condition, the decision to remain silent and secret about my status was a choice, not only born out of a need to protect my own fragile self-esteem and self image at a time when I felt very vulnerable, but also to protect my siblings, family dependents and friends from exposure to discrimination and rejection and possibly jeopardise their physical, emotional and mental well-being and put their living circumstance at risk of attack if outed. Maintaining this self imposed secrecy for a quarter of a century has led to feelings of never being truly self in friendships and relationships, hidden, masked, inauthentic, lips sealed on/by this diagnosis, functioning rather than living fully, feeling worthless, ashamed and guilty about the situation I find myself in and lacking the trust and energy to disclose, always fearing the rejection of friends and colleagues were they to know and still too scared and insecure to risk a negative outcome. A score of years and more lately sadly the climate of fear and ignorance, even among health professionals, persist about HIV/AIDS rendering disclosure of HIV status fraught with difficulty and danger.
ANON

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Appendix 3
Healing response
The healing response refers to potential symptoms or changes to a persons wellbeing, following complementary and alternative medicine treatment, usually over a short period of time before they begin feeling the full benefit of the treatment. The vast majority of people who access complementary therapies experience positive effects following treatment, with many reporting an improvement in their mood, symptoms, energy levels or general health and well-being. However on occasion, clients may experience adverse effects or less positive responses. These may be emotional or cathartic in nature, such as a heightened emotional state, or feeling anxious, tearful or sad. Others are more physical, and considered to be part of a natural healing response* examples of which include changes in urination (colour or frequency), headaches, fatigue, stiffness, disturbed sleep, shivering, bowel disturbances, dizziness, or a recurrence of old pain that may have been dormant for some time. Healing responses are not uncommon in the field of complementary therapy and are quite widely reported in the literature. They are also usually short-lived, lasting from a couple of hours up to a few days after treatment, and tend to have stopped or significantly reduced by treatment four or five, in those individuals affected. A number of studies and clinical practice indicate that often clients will feel worse before they feel better during a course of complementary therapy treatments, and that clients only need to be reassured that these symptoms will pass (Mackereth, 1999).** While no-one knows the exact cause, one commonly upheld theory is that the healing response is effectively part of a cleansing process, with the complementary therapy releasing blocked energy, and/or waste products into the body, which then triggers a natural healing process. Of course, one final important consideration is that complementary therapies are personcentred treatments, which focus on the health and well-being of the individual, in a safe and often relaxing environment, facilitated by a neutral yet empathetic therapist. In such a context, clients and particularly those who have a chronic illness - often feel they can truly relax and let go of their anxieties and fears, which can manifest as physical or emotional responses.
FHT 2013. Provided courtesy of the Federation of Holistic Therapists (www.fht.org.uk), the UK and Irelands largest professional association for complementary, holistic beauty and sports therapists.

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