The overarching aim of this study was to explore HIV nurses' stories of clinical practice to gain an understanding of how therapeutic relationships developed and how these relationships were then used in providing person-centred care.
The objective of eliciting stories was to identify and analyse situations where nurses had dealt with the emotions of patients with complex needs; and the therapeutic relationships that developed between HIV nurses and patients through such situations.
The intended outcome of the study was to outline an approach that contributed to existing thinking in relation to how nurses develop therapeutic relationships and how these relationships were then used to provide person-centred care for people living with HIV.
Research approach and method
An interpretive phenomenological analysis (IPA) approach was used to guide all aspects of the study design. IPA is an approach used in qualitative, experiential and psychological research, developed by Smith in the 1990s (Smith, 2011).
IPA has been adopted across a range of applied disciplines, such as health psychology, counselling and nursing. Over the past 20 years, IPA has grown in popularity and continues to gather momentum as an approach to experiential research (Smith, 2011). The approach recognises the role of the researcher in interpreting and then understanding the experiences of the participants, offering a stance from which to interpret data generated as a result of carrying out research.
Within IPA, interviews are considered to be the most appropriate way to collect data, with one-to-one interviews being the most common form of data collection (Flowers, 2008; Smith, 2011). To ensure that the data collected are of rich quality, the researcher needs to find a way to enable the participants to consider and reflect on their experiences; therefore, it was important to create questioning that enabled the participants to dwell in and on the experiences being enquired about (Eatough and Smith, 2006). Therefore, a semistructured interview schedule was developed that, while helping to structure the interviews to some extent, also facilitated such dwelling.
It was hoped that by creating the interview schedule and asking questions such as: ‘Tell me about a patient situation that you will never forget about’ and ‘Tell me about a patient situation where you encountered strong emotions’, this would help reveal the nature of how therapeutic relationships were developed and how care was delivered as a result of these relationships.
Study setting and participants
According to Smith et al (2009), IPA studies aim to recruit a homogenous group for whom the research aim is meaningful and who can give an idiographic perspective, focusing on individual accounts of their experiences relating to the aim. It is suggested that IPA studies work well when the participants have an interest in the phenomenon under investigation (Smith et al, 2009); and that, when considering recruitment of participants, one of the main criteria is that they should be able to grant insight because of their expertise in the area under study (Reid et al, 2005).
The study used a purposive sample based on the membership of the north-west of England HIV nurses' network. Permission was granted from the chair of the network to email details of the study to the membership (n=150).
To be included in the study, participants had to have been working at a senior level for 12 months or longer caring for people living with HIV (such experience was used as a proxy of expertise in the area).
Ten nurses expressed an interest in taking part in the study, being willing to share their experiences, and all 10 met the inclusion criterion. Such a sample size was consistent with other IPA studies such as Dean et al (2006), Dickson et al (2008) and Blank (2011).
Approval for the study was given by the Faculty of Health, Psychology and Social Care university research ethics committee (application 1172) and the Hospital Research and Development Department (12RECNA43).
Two weeks before their interview, participants were given a written information sheet, which detailed the nature of the study and the reasons why it was being carried out. They gave written consent to take part in the research. During the process of taking consent, they were given an opportunity to ask questions and were informed that they could drop out of the study if they wanted.
Participants were made aware that the interview would remain confidential unless they disclosed anything that indicated a risk to themselves or others. Pseudonyms were used after data collection and before analysis.
Data collection took place at the participants' place of work by MC, who was known to them. Interviews lasted 45–90 minutes and were recorded. Participants were sent a copy of their transcript to ensure that they were happy with what was discussed and reported within the interview (Lincoln and Guba, 1985).
Pollock (1991) suggested that researchers needed to be transparent about the way in which they have managed a large amount of data and then how they made choices about reducing such data. These complex decisions need to be supported and discussed as part of the analysis process. Pollock (1991) believed that this was a challenging, time-consuming, and complex issue within qualitative research.
To analyse the transcripts, an adapted version of a process detailed by Smith and Osborn (2009) and Blank (2011: 119) was used. It was adapted for ease of use; both Smith and Osborn's (2009) and Blank's (2011: 119) frameworks contained elements that, when combined, enabled data to be analysed in a logical way in line with IPA. The five-step process consisted of the following:
- Stage one: a close reading of each individual transcript took place, with the left-hand margin of the transcript used to note any data that seemed interesting or significant
- Stage two: the transcript was re-read and, within the right-hand margin, possible themes were recorded
- Stage three: themes were clustered together and presented in a tabular format to ease understanding of the themes
- Stage four: a ‘master table’ of themes was developed for each participant
- Stage five: following analysis of all transcripts, themes were compared across the transcripts and an overarching master table of themes was developed for the 10 participants.
Through the interpretation of the data as part of the stages, three themes that appeared to influence nurses' ability to develop therapeutic relationships with patients emerged. These were: the nurse's way of being; the nurse-patient relationship; and the influence of stigma.
The nurse's way of being
When working with people living with HIV, many participants described a particular way of behaving, linked to how they interacted, which became central to the development of the therapeutic relationship.
Participants felt privileged to care for people living with HIV and this seemed to affect their way of being in terms of supporting the person to accept their HIV diagnosis. It was acknowledged that sometimes the nurse might be the only person with whom the patient had shared their most intimate details:
‘I think it is a privilege when someone comes to you with HIV or not HIV and are comfortable around you and I think that's a skill that as HIV nurses we need to be more proud of sometimes. It's not easy and I think sometimes people think, “Oh HIV nurses you just give them medicines and hold their hands and stuff,” but actually the skill is in just being with somebody and accepting them.’
‘The reason that I like sexual health are the reasons that you get to … talk … you get a lot of patients who come to you and talk about things that they have never spoken to anybody else about … and that's a real privilege in lots of ways.’
The importance of ‘just being’ with someone was elucidated, with a participant suggesting this afforded opportunities for listening and providing complete focus on another person:
‘Giving time and being. When possible, not being interrupted. When you can be available and think mainly those things, actually listening, being … just being with the person … just being close by.’
Similarly, for the next participant, a way of being with others did not need to be overly demonstrative, and could be more subdued while still helpful. She acknowledged there was room for different personalities in nursing practice. Using humour in the form of jokes might be a way of lightening stressful situations although, ultimately, there is a need to individually assess each situation in order to empathise:
‘I think my way, much as I'm not a touchy-feely kind of person, I think my other way is helpful … I recognise we all bring different things to the table and we're all valid and important. I kind of just backfill with little silly jokes but not inappropriate I'm very … good at putting myself in someone else's shoes … I almost feel like, across the room, put myself with them and think how I would want someone to be with me.’
Erin's ability to involve herself at this level could bring meaning to the relationships she has with people although this could come at an emotional cost to her, and she was left unsure about what patients were really experiencing as they left the clinical area.
‘Actually, I think it is a good thing but it's quite draining really, because I can get very involved in my head. I do go away and it plays on my mind a little bit, you know about what they're really going through when they walk out the door.’
The concept of empathy was demonstrated by a participant who outlined her reasons for choosing HIV nursing as a career. She described a natural interest for this particular group, which was related to her own life experiences.
‘I think probably that I would have a natural interest or empathy for this particular cohort of patients. I suppose that gives me naturally, um, a desire to want to care for them. So I suppose in that way I'd want to look after them, so it comes more naturally to want to get alongside them or support them, or you know, spur them on in different ways … I think my own experience, knowing about difficult times in my own life, enables me to have more empathy for other people.’
The participants described occasions when, because of the nature of the disease, the nurse-patient relationship might become intense. In the past, before effective treatment was available, more people living with HIV were likely to die from their disease, often in distressing circumstances. For one participant, who was gay and a young man when studying HIV nursing, this meant that he could relate more intensely to the patients he was nursing:
‘I was on quite a lot that week when he was admitted and he ended up going into the intensive care unit and he died and he was only … well I was probably only about 23, 24 or 25 at the time and he was a bit older than me … and I remember thinking it was very difficult as he was so young … hopefully, I provided them some support … they were young gay men like me I suppose and I just thought, you know this should not happen.’
One participant recalled a person she had cared for at the time of diagnosis, and the way in which they remembered how she had helped them cope:
‘He got diagnosed on the ward, he was really poorly at the time. He said “Oh yeah, when I was diagnosed, you came in and you put a drip up for me” and he said “I'd just received the news that I was HIV positive” and he said “I don't remember what you said, but I remember you sat down on the bed next to me and you held my hand and it was the way that you looked at me” and he said “that really helped me to cope with that day”. And I thought aww, wow, I was so pleased that I had stood out for him and it's like what you want as a nurse, that you want to be able to be there for people … It doesn't matter what words you choose or what you say, but the care that I showed him that day obviously came across.’
It was evident from the data that the HIV nurses in this study were often placed in challenging situations, dealing with people living with HIV who were often poorly, angry and unwilling to engage with professionals. One described how she developed a trusting relationship with a patient who had been described as challenging by other nurses:
‘… not going in all guns blazing, you know just going in and sort of just being a friendly face to start with, and then just gradually, you know, start asking questions, encouraging him to ask questions … rather than going in and you know, “right, I'm you know I'm the nurse and this is what you've got and this is how it is, and this is how it's going to be”, and rather than like that just a sort of gently, gently, softly approach.’
Another nurse acknowledged the role that experience played within the therapeutic relationship when identifying the needs of people living with HIV:
‘I think at the beginning it's gung-ho, I'm going to help you and you're going to listen and everything will be fine, but you recognise … as time goes on, that isn't the way to do it and that's not what patients want and that's not what makes a success story for them.’
Iona described how she felt the development of a meaningful relationship where she could support people living with HIV to begin a treatment regimen so the viral load can become undetectable. If the viral load is undetectable, then the virus cannot replicate and cause damage to the immune system. Had this patient not begun treatment, the alternative for him would have been a palliative care referral:
‘It was more holistic care because I could give him a cup of tea and have a chat. At first, it was quite difficult to build up that relationship with him because he just used to come in, sit there and I would ask him questions. It was like playing a yes/no game and, eventually, he started to open up and I found out more about him, and then we actually got him to be undetected for the first time since he'd been diagnosed quite some time ago.’
The influence of stigma
When considering the ways in which they could develop therapeutic relationships with people living with HIV, an aspect the nurses raised repeatedly raised was the stigma linked to a HIV diagnosis. This had a negative effect on the development of the relationship not only with professionals but also with family and friends. One participant described the difficulties for someone who might want to tell someone about their diagnosis:
‘There isn't anything I can think of that if you are frightened, you couldn't not tell a person, everything else you know people generally you know may not like it, but they would be quiet, OK I can talk to you about this, talk to you about that, I can disclose you know whatever, but with HIV it's the one thing that's a no-no because it's still out there. You are frightened because of the stigma around.’
Another participant expanded on this, describing the effects of the initial publicity surrounding HIV in the 1980s and how it influenced the stigma around HIV. The adverts from that time were perceived as encouraging negative thinking about HIV:
‘I think that possibly working with HIV-positive patients with it being a very stigmatised illness … with the patients often being marginalised … with patients who to this day still … remember the adverts that portrayed the tombstones and with then their … thoughts on HIV being constantly really forced to a negative by people dying.’
One participant described a person living with HIV who was worried someone might see her attending the clinic, and this had a palpable influence on the development of a therapeutic relationship. It was difficult enough for the patient to even attend the appointments, needing her daughter to support her throughout the whole experience.
‘A lady kept coming to the clinic with her daughter but she [fears] being seen and she wears a headscarf and dark glasses, and it was quite a public thing … she found out through him being prosecuted that she could potentially be infected, and she was in her 50s and was very respectable, middle class, white British, very normal kind of life … not someone like you'd automatically think would be at risk and just because her ex-partner … I don't think she thought there was any risk … it was sort of how palpable it was for her actually just being there and having her daughter with her actually holding her together into the clinic room.’
This nurse described the need to be ‘normal’ with this patient and how crucial it was to be non-judgemental:
‘I remember just looking at her daughter whilst she was talking and she looked at me with a look of gratefulness, like “you're not judging her”. I would say “Hi, blah de blah, how did you get here? I believe traffic was chock-a-block this morning …” I remember her just looking at me, really grateful that I was being normal with her.’
Another interviewee described the difference between HIV as a chronic illness and other diseases, such as diabetes. He emphasised how the stigma altered the way in which the therapeutic relationship might be developed:
‘There are issues around disclosure and how you would feel in that situation. It is not as straightforward as asking about diabetes because there is stigma attached to it, isn't there? So you have got to be mindful of that and I guess that is one of the big issues that would have changed the way we deal with patients.’
The stories that the participants chose to share throughout the interviews demonstrated the uniqueness of the nurse-patient relationship, alongside the challenges nurses face while providing person-centred care. The stories also give an insight into the world of the HIV nurse and what it means to provide patient care from the nurse's perspective.
The results of the study provide some interesting findings about the development of therapeutic relationships in HIV care. It is evident from the findings presented in this article that communication skills are fundamental to developing the nurse's way of being. The nurse's way of being heavily influences the therapeutic relationship that is then created with people living with HIV. As a result of the therapeutic relationships that are developed through the nurse's communication style and the nurse's way of being, people living with HIV are able to express their concerns, which in turn leads to care that is person centred.
When considering therapeutic relationships in this care setting, what became evident was the impact of stigma on care delivery. The interviews highlighted how stigma was always present in the background, which had the potential to influence communication and affect the therapeutic relationship. HIV-related stigma plays an integral part in how therapeutic relationships develop with people living with HIV. Stigma provides a lens through which how therapeutic relationships are developed can be viewed.
A common theme that emerged within the literature that makes HIV different from other long-term conditions is stigma. People living with HIV continue to be affected by internal and external stigma so it a key consideration when developing a therapeutic relationship.
Within the participants' interviews, the impact of stigma was explored by Allanah, who felt that there was no other condition that you would be as frightened to tell anybody about because of the stigma associated with it.
This is supported by previous research by Jelliman and Porcellato (2017), who found that stigma associated with HIV deters people from using services, which in turn creates isolation, loneliness, low self-esteem, self-doubt and vulnerability; these all, ultimately, have a profound impact on health and wellbeing. Stigma, which can arise because of complexities and misunderstandings around HIV, has been said to be one of the main contributing factors in preventing the global HIV epidemic from being controlled (Mahajan et al, 2008).
Within this research study, it was identified that stigma plays a role in how the therapeutic relationship develops. Within the participants' transcripts, there was a strong sense that the nurses, through their use of empathy and awareness of the impact that stigma had on a patient, were able to support the patient through difficult events. This view is supported by Sowell et al (1997), who suggested that nurses have the most frequent interactions with people living with HIV, and are therefore ideally placed to help patients deal with the negative impacts of stigma on their health and wellbeing. Through the use of empathy and effective interpersonal communication, nurses can help people living with HIV to create positive coping strategies and access the care they need.
The research findings highlighted that empathy was central to developing therapeutic communication. This is echoed within the work of Levett-Jones et al (2017), who suggested empathy was fundamental to therapeutic communication and integral to high-quality outcomes. Within the study, participants articulated different ways in which they demonstrated empathy while communicating. Louis's way of demonstrating empathy was by giving time and space for the patient to speak, while Erin adopted an alternative approach, using humour to help ease challenging situations in an empathetic manner. Thus empathy can be communicated in different ways and individuals assess each situation to find ways to empathise effectively, consistent with their own way of being.
Within the literature, empathy is often described as the ability to understand and appreciate another person's experience then communicating this understanding to the person (Ançel, 2006). Empathy involves the cognitive ability to comprehend what another person is feeling, an emotional resonance with those feelings and the willingness to respond appropriately to the person's needs (Hatfield et al, 2009). Empathy is considered a basic component of therapeutic relationships and a crucial factor in determining patients' quality of care (Hojat et al, 2013). What was apparent within the research was that the participants were actively engaging in empathic communication as a means to provide care that reflected the needs of the patient rather than delivering care that was less optimal.
According to Rogers (1984: 142) an empathetic person strives to enter another person's ‘private perceptual world’ and, in doing so, becomes thoroughly ‘at home within it’. Levett-Jones et al (2020) took this notion of the empathic person further as a way to explore the subtle aspects of empathic interactions with patients. Levett-Jones et al (2020) identified a conceptual model for understanding empathy, referred to in their research as an empathy continuum, which can be used as a guide to understanding, teaching and evaluating empathy. Empathy within this continuum identifies nine dimensions of empathy—empathic cognition, empathic humility, empathic imagination, empathic intelligence, empathic perception, empathic response, empathic communication, empathic behaviours and empathic reflection. These shape the empathic continuum, which is made up of a three-stage overarching process of perceiving, processing and responding.
The empathy continuum offers a theoretical framework to explore the development of empathy and can be used to explore how empathy was displayed by participants alongside Rogers' (1984) description of an empathetic person.
Harry displayed empathic behaviours by the deliberate action of going to see a patient in the intensive care unit with the view of alleviating the patient's and the family's distress. Shauna's recollection of the newly diagnosed patient enabled empathic reflection, providing her with the opportunity to learn from this to support future encounters. Orla, Niamh and Iona demonstrated a mixture of empathic perception and empathic intelligence by being able to respond to the patient's needs without forcing their own agenda on the patient (Levett–Jones et al, 2020). Therefore, the nurses' ability to demonstrate empathy through effective communication became the basis on which the therapeutic relationship was developed.
Based on the research findings and other academic literature, a framework (Figure 1) was created to articulate how a therapeutic relationship could be developed within HIV care.
Person-centred care has been associated with nursing by various nursing theorists. The most often cited within the nursing literature is McCormack and McCance's (2006) person-centred nursing framework, which comprises four constructs: prerequisites; care environment; person-centred process; and expected outcomes. While McCormack and McCance's (2006) framework offers insight into how person-centred care can be developed within nursing and shares some similarities with the HIV person-centred framework, it does not explore the role stigma plays in the care setting. The HIV person-centred framework moves thinking forward, with regards to the different challenges faced when meeting the needs of people living with HIV.
HIV person-centred framework
The HIV nursing philosophy is central to the HIV person-centred framework. Within the HIV nursing philosophy, empathy is paramount, which leads to the development of the therapeutic relationship, which in turn enables people living with HIV to disclose their concerns. Empathic communication enables care that is person centred to be delivered. If the HIV nursing philosophy is to be created within clinical practice, we need nurses who are empathetic and able to communicate effectively to establish a therapeutic relationship. Fundamentally, the therapeutic relationship and the nurse's ability to be empathetic are based on the nurse's way of being (the way they are as a person).
HIV nursing is influenced by stigma, which is based on the history of the HIV disease and society's misperceptions around HIV. The influence of stigma and self-stigma is always present in the background of HIV care delivery.
Another influencing factor within HIV nursing is the culture of nursing, in which nurses learn their way of being and how to relate to patients. HIV nursing and the nursing culture in general are influenced by the biomedical model, which focuses on disease management and evidence-based care. Although the biomedical model is shifting towards a more person-centred approach, the dominant focus is still on medicine and disease management, which influences nursing practice. Therefore, the biomedical model is a significant influencing factor in the establishment of the HIV nursing philosophy.
The above findings and framework are of increasing importance because the landscape of HIV care is changing and HIV care is moving towards long-term care management. People living with HIV will be cared for outside specialist centres. Therefore, a wider understanding of how to build therapeutic relationships with this cohort of patients is needed.
The framework may also be applicable to other areas of nursing care, particularly where stigma may be a barrier to forming therapeutic relationships, such as self-harm and substance misuse.
This article has explored, illuminated and collated key features that are important when considering how therapeutic relationships are developed between the nurse and patient in HIV care. The research findings contributed to the development of a person-centred nursing framework to explain how empathy and therapeutic relationships are developed within this care setting.
As HIV care moves towards a chronic manageable disease area, service delivery is changing, with patients accessing services delivered by a range of professionals to meet their healthcare needs.
Despite these changes in this disease area, the nurse's role within this process remains central in providing non-judgemental, stigma free, person-centred care so people experience positive health outcomes.
- The nurse-patient relationship is central to the delivery of person-centred care for people living with HIV
- Empathy is essential component to the development of therapeutic communication
- Stigma around HIV can affect people's ability to seek care and support so a significant influence on the development of therapeutic relationships in HIV. Nurses are ideally placed to help support people with the negative impacts of stigma
- A person-centred framework provides an opportunity to explore how therapeutic relationships are developed within HIV care. This takes into account factors that help shape the relationship, including the nurse's role and the nursing philosophy that guides practice
CPD reflective questions
- What does person-centred care mean to you?
- Why is it important to understand stigma when working with people living with HIV?
- What factors prevent you from developing therapeutic relationships?