ReGAE 5: Can we improve the surgical journey for African-Caribbean patients undergoing glaucoma filtration surgery? Some preliminary findings.

AIM: To explore the experiences of African-Caribbean patients who had undergone filtration surgery for advanced glaucoma.
METHODS: Semi-structured qualitative interviews were used to collect the data and an interview guide was developed. Participants recounted when they first became aware of a problem with their eyes and their feelings at the time. Subsequently they were probed about their subjective experiences of becoming a glaucoma patient, receiving treatment, the decision to undergo surgery, and its aftermath. The perceptions of three participants from three different generations of African-Caribbean men were selected from the larger study for presentation in this paper. Interview transcripts were subjected to narrative analysis.
RESULTS: The concept of patient-partnership was re-framed in terms of mentorship. Surgeon-patient relationships are central to developing effective coping strategies. Support to face the ordeals ahead, challenge to take on new responsibilities, and help to envision a meaningful life with glaucoma are fundamental to fostering trust and maintaining motivation to continue.
CONCLUSIONS: The use of patient narratives provides a valuable a resource for enhancing communication skills and patient-centered care in the hospital eye service.

Introduction

In medicine narrative accounts of their illness by health service users and participants in clinical trials are recognised increasingly as a rich resource for understanding, beyond that afforded by clinical examination, formal case history or quantitative research methods.1–4 In research, narratives “help to set a patient-centered agenda, may challenge received wisdom, and may generate new hypotheses”.5 Often central to such narratives are doctor–patient relationships, and the extent to which patients’ trust and confidence influences long-term outcomes of care.6 Impaired doctor–patient relationships are cited as limiting opportunities to improve outcomes from chronic disease, particularly for patients in Black and minority ethnic (BME) communities.7–9 Therefore, there is a continuing need for research into how health care processes and outcomes are influenced by doctor–patient communication and relationships, particularly in relation to improving outcomes from chronic disease among BME communities.

Recently it has been suggested that glaucoma specialists’ knowledge of patients’ subjective attitudes to glaucoma-related issues deserves further investigation.10 Glaucoma is a major cause of irreversible blindness in people of African descent, with research suggesting a higher prevalence in males.11 Lack of awareness of risk, low levels of referral, and under-utilization of the primary eye-care service have all been identified as issues associated with preventing unnecessary numbers of Black people becoming blind because of the disease.12–15 In refractory, progressive and potentially blinding glaucoma, such as that observed in the African-Caribbean eye, filtration surgery (trabeculectomy) is the surgical option of choice when topical ocular medications and/or laser therapy have failed to achieve adequate control of intraocular pressure (IOP). The aim is to produce long term functioning drainage blebs with optimal IOP and a good safety profile. This is particularly important in young patients, African-Caribbean patients, and patients with severe secondary glaucoma.

Purpose of the study

This work builds on earlier qualitative research by Green and colleagues into the impact of glaucoma diagnosis and sight loss.16 It is part of an ongoing, multimethod investigation into the experiences of African-Caribbean patients in the hospital and community eye services, which includes interviews with patients about their experiences from diagnosis to surgery and beyond.15,17,18 Sandwell and West Birmingham Local Research Ethics Committee gave approval for the study.

Data collection

The sampling was purposive, the inclusion criterion being all post-trabeculectomy, African-Caribbean patients (N = 28 at the time) attending one specialist glaucoma clinic at a regional ophthalmology center. There were no exclusion criteria beyond ability to communicate in English. Fifteen patients expressed interest on initial contact. Some (older) patients decided on reflection, that they would rather not go ahead, for some, other commitments supervened. Ultimately, eight patients gave their informed consent to be interviewed. Semi-structured qualitative interviews were used to collect the data and an interview guide was developed. Participants were asked to recount when they first became aware of a problem with their eyes and their feelings at the time. Subsequently they were probed about their subjective experiences of becoming a glaucoma patient, receiving treatment, the decision to undergo surgery, and its aftermath. MG and VC conducted the interviews, which were recorded with permission. The transcripts were transcribed and coded using both manual and computer-aided methods (NVivo©; QSR International, Melbourne, Australia). Interpretation and inferences were validated through discussion of emerging concepts within the research team and checking back with participants where possible.

For the purposes of this paper, we present preliminary data comprising ‘fully formed narratives’ (see below) from three men of different generations. Collectively they characterize key concerns about African-Caribbean glaucoma namely, early onset, male prevalence, aggressive disease, and low levels of community awareness. Individually, each highlights a particular clinical and experiential perspective on being a glaucoma patient, which provides a focus for reflection on the nature of the surgeon-patient relationship. Their clinical and demographic profiles are detailed in Table 1.

Table 1

Characteristics of the participants

	Nathan	Michael	Selwyn
Age (yrs)	19	43	74
Social history	Single parent	Married	Lives with wife
	Living with	Two small	Retired
	Mother	children	Not eligible to drive
	Not employed	Manual worker
	Not eligible to drive	Not eligible to drive
Duration of glaucoma (yrs)	8	6	6
Type of glaucoma	Secondary OAG	Juvenile OAG	Primary OAG
Highest IOP (mmHg R + L)	54, 44	42, 44	28, 37
Cup disc ration (R + L)	0.9, 0.9	0.9, 0.9	0.8, 0.8
Visual field loss (R + L)	Advanced R + L	Advanced R + L	Advanced R + L
Previous glaucoma surgery	x4	x3	x1

Abbreviations: IOP, intraocular pressure; OAG, open-angle glaucoma.

Data analysis

When remembering and reflecting on experiences individuals often organize events into coherent stories, particularly where there has been dissonance between the ideal and real, self and others.19–21 Narratives are stories that recount a sequence of events that happened, which are significant for both narrator and audience.22 Although the temporal sequence may not be as ordered in the telling, they comprise a plot, beginning, middle and end, and an internal logic that makes sense to the narrator. Several writers describe procedures for reordering transcripted data into a temporal sequence by creating core stories and ‘stories within stories’ [sub-plots].23–25 There is no single theoretical basis or standard approach associated with narrative analysis. However, sociolinguistic approaches are widely used because they focus not only on content, but also on the structure and social interaction within narratives.26,27 A structured narrative comprises an ‘abstract’ (what the story is about), ‘orientation’ (description of situation and context), ‘complicating action’ (main account of events), ‘evaluation’ (highlights point of the story), resolution (outcome), and coda (indicates closure).26 Although some may be absent, a fully formed narrative contains all six elements. The evaluative component is considered especially important because, “narrative is a presentation of the self, and the evaluative component in particular establishes the kind of self that is presented”.28

In line with this the transcripts were reduced to three core stories using the procedure shown in Table 2. These core stories were organized around four stages signalled in the interview guide: being alerted to a serious problem; receiving the glaucoma diagnosis; facing up to treatment and surgery; life after surgery. Subsequently, a fully formed narrative or sub-plot within each core story was chosen because it contained powerful images of actions and emotions associated with the impact of the diagnosis and the surgeon-patient relationship. These core stories and sub-plots were used to make comparisons between events described by the participants and derive thematic analyses of their experiences.

Table 2

Stages in core story development

Content of transcripts reviewed and organised chronologically. Prompt questions deleted. Cross referencing with original transcripts to confirm and validate meanings. Combination of remaining elements into a coherent story. Checking back with participants to verify story.

Interpretation of the findings

Several sources of data are provided in the paper for readers to consider the interpretation (Figure 1). Excerpts from these, and from the original transcripts, are used as illustrative examples of how actions and events were linked to themes derived from interpretation. The three core stories charting each man’s glaucoma journey are included as Appendices 1–3 (pseudonyms are used in each case). The structured narratives or sub-plots are shown in Table 3. Excerpts used in the texts are annotated appropriately as follows: participant’s initial, core story (CS), original transcript (OT), sub-plot (SP). Michael’s sub-plot was the starting point for interpretation. It centered on the impact of receiving a diagnosis of glaucoma, and meeting with the glaucoma surgeon.

Figure 1

Analytical framework.

Table 3

Sub-plots

Michael
Abstract: what the story is about	Obviously I was, you know, worried, very worried, and first, when he told me that I had the condition, I was devastated.
Orientation: establishes situation, context	Originally, the one specialist, I was very tense with. When he told me the point I had glaucoma it hit me like a tornado and he stressed how bad the condition was.
Complication: main account of events and how these are made sense of by the narrator	He was quite abrupt, as he was under the impression that I would have been aware about the eyes from the time, you know, that I first noticed it was going blurred. But, as I say, I wasn’t aware of glaucoma and my sight problems. Because the type of work that I do, I have regular eye checks. But, there’s two types of eye checks, and after I do my research I find that they don’t check pressures in your eyes. The type of eye test I was getting from work was by a nurse that was coming in just to check your eyesight. So when I had that I was given the all clear, I was fine. So when I went to the optician and given a more detailed eye test, and says there were high pressures in my eyes, that’s when I start to worry.
Evaluation: highlights the point of the story	Then, when he told, me, the first consultant, that I had glaucoma, you know, quite abrupt, he stressed how worse the condition, the actual state, the damage level of the optic nerve in both eyes. It was quite frightening to hear that.
Resolution: outcome, what finally happened	But when they referred me to (the specialist) who specialises in glaucoma in Afro-Caribbean people I was very, very comfortable because he assured me that he would do everything he can.
Nathan
Abstract: what the story is about	Well, it started I had an appointment.
Orientation: establishes situation, context	Then he said the pressure in my eye was fifty, which is extremely high. And he said, “Well, we’re going to have to operate to get the pressure down, otherwise I will go blind, within a few months.
Complication: main account of events and how these are made sense of by the narrator	So he asked me would I prefer to have an operation, rather than the eye drops. ’Cos obviously the eye drops are going to take longer to take down the pressure. So it was a three-way decision really. It was me, my Mom and the doctors all agreeing at the same time.
Evaluation: highlights the point of the story	Yeah, I was in total control really, ’cos if I didn’t want to have the operation, then, I wouldn’t have it.
Resolution: outcome, what finally happened	It’s kind of important because, obviously, I mean if I’m not in total control and the doctor’s saying, obviously I need to operate, and obviously, I’m not saying you need to operate then there’s no comparison, there’s no bond where the doctor is getting on with the patient.
Coda: indicating closure	’Cos it’s like a rocky road, actually. You never know what’s going to be at the end, you never know what’s going to happen half way in between. You’ve got to keep that bond between you and the specialist at all times.
Selwyn
Abstract: what the story is about	Well I could see that me eyes wasn’t working as good as it was before, but I put I down to age, so I says “Oh I got to get the glasses.” So I been to the optician and him, he tells me that he thinks there is glaucoma in the eyes and, he refers me back to my doctor.
Orientation: establishes situation, context	Then my doctor sends me to the hospital and straight away they tell me that I had glaucoma.
Complication: main account of events and how these are made sense of by the narrator	I didn’t feel any way, because when you’re getting old things does happen and I know that it was in my family. I am not really the worrying type. I don’t care how bad it is and I can train myself for that, because when you worry it doesn’t make it any better. I said to him (surgeon) “Is that what it is?” I says “Well, what will we do then?” He says, “Well you’ll have an operation.” I says, “Well, what suppose I don’t want an operation?” He says, “Well, you’ll get blinded.” (Laughs)
Evaluation: highlights the point of the story	I was worried about getting blind, that’s the only thing I was really worried about. Because when he said, “There is a chance that you will be able to see properly if it works alright, but if you don’t, you will blind anyway.” So, it was a bit worrying but not too much.
Resolution: outcome, what finally happened	So I says, “Alright then, I’ll have an operation!” So we did the operation, and I didn’t think anything could go any better.

Impact of the glaucoma diagnosis

The abstract and orientation of Michael’s story (Table 3) mark it as an ‘atrocity story’29 – “I was devastated”, “it hit me like a tornado”. Reading this as simply a reporting of events, the psychological effect of distressing news delivered ‘abruptly’ and in an unsympathetic manner by professionals – and the key message, “It was frightening” stands out. There is an implicit accusation that Michael has been dilatory and irresponsible, and must take the consequences.

…he was under the impression that I would have been aware about the eyes from the time, you know, that I first noticed it was going blurred. ... he stressed how worse the condition, the actual state, the damage level of the optic nerve in both eyes. (M:SP)

However, in portraying himself after this distressing event, Michael sets out to refute this and establish his identity as a responsible person in relation to health issues. His actions were understandable because another professional gave him wrong information. He reinforces this responsible identity in his account of the post-surgery period (Appendix 1). He also explains his actions in terms of lack of knowledge and awareness of glaucoma.

I didn’t think it was an issue at the time because at the time I was told my eyesight was perfect. If there was a more thorough check at the beginning I would have taken more early steps. (M:CS)

I did not know any family history of glaucoma. I did not even know what glaucoma was at the time. When my mother told me her brother went blind in his forties or fifties and he had no diabetes, I assumed the connection was from her side of the family. (M:OT)

Nathan’s and Selwyn’s stories (Table 3) support and augment the themes emerging from Michael’s story. Nathan was also unaware of a family history (grandfather) until receiving his own diagnosis. He portrays himself as informed but anxious in the context of his identity as an experienced ophthalmic patient.

I didn’t know if to expect something good coming out of it, or something bad coming out of it or what. I’ve had eye problems since the age of four or five, so establishing something new in an eye condition was just like, normal really. (N:CS)

Selwyn is the most sanguine for two reasons. First he is aware of a family history of blindness, secondly, “I didn’t feel any way, because when you’re getting old things does happen …” (S:CS). Thus, the impact of a glaucoma diagnosis on these three men is constructed along a continuum from ‘devastated’ to ‘sanguine’, the mediating factors being related to expectations, message transmission, and glaucoma awareness (Figure 2).

Figure 2

Thematic framework of responses to glaucoma diagnosis.

Meeting the glaucoma surgeon

Resolution in the form of reassurance is achieved for Michael when he meets his glaucoma surgeon. In terms of fictional journey tales this is analogous to the appearance of a mentor. Mentors know the territory. Throughout the journey they support and challenge their charges to continue. They protect and encourage, clear obstacles, explain mysteries and point the way forward. “We greet them with awe and, above all, hope”.30 This view pervades Michael’s descriptions of his meeting and subsequent interactions with his surgeon. Such reassurance is important in the challenges and ordeals associated with an onerous treatment regimen, eventual trabeculectomy, and again in the post-surgery period. Added confidence comes from the fact that his surgeon has recognized ethnic-specific expertise. Peer validation combined with empathy, respect and information giving are represented in the story as the reasons for Michael’s bestowing trust on the surgeon. Positivity both in content and delivery is also a key factor in Nathan’s account of interactions with his surgeon. He gives a clear rationale for its importance to him. From one perspective Nathan’s sub-plot (Table 3) reads as an example of participatory decision-making in action. In his evaluation of events (in response to a probe about how far he felt in control of decision-making) he casts himself as equal partner in the process. However, how he perceives his responsibilities as a patient is revealed in his account of the story’s outcome (resolution) and coda. “It’s kind of important …” not to break the bond between surgeon and patient. He sees maintaining the bond is his responsibility. This conceptualisation of the mentor (surgeon) as both guide and gatekeeper, with the key to successful passage, able to select or reject the traveller24 appears again in his account of the post-surgery period. As in other illness experiences, becoming a glaucoma patient may be seen as a stressful life transition. Perceptions of self-efficacy can be a valuable resource or a vulnerability factor in coping with such transitions. Although conceived as a trait, general self-efficacy is changeable, becoming more elaborated and stable as people age.31 Reading his core story in this context it is not surprising that, in comparison with the two younger men, high perceived self-efficacy stands out as the theme of Selwyn’s journey. His accounts of conversations with the surgeon are suffused with humor. Their relationship is portrayed as reciprocal and less dependent. The surgeon earns respect by being “friendly and courteous.” Likewise, Selwyn’s anticipation of surgery is action-focused. He draws on a repertoire of external, personal and spiritual resources that help him face the ordeal with confidence. In contrast, Michael and Nathan talk of anxiety or panic at the thought of someone cutting into “the most delicate part of the human body” (M:CS).

I was very, very comfortable because he assured me that he would do everything he can. (M:SP)

He told me what could happen … he explained the detail and told me the risk involved. (He) talk me through every examination … I get a lot of positive with what he said and with that I feel really good. (M:CS)

…the best is that he’s had more dealings with Afro-Caribbean and glaucoma cases. I felt as though I was in very good hands and the other consultants, they say the same thing. So I felt at ease, more comfortable. I left everything in his hands and I was very grateful. (M:CS)

I’ve come across some doctors where they’ve had a load of pauses in between what they were saying to me, which I wasn’t really comfortable with. I probably think its ’cos they’re unsure. I mean if someone’s talking about something you really need in life, they have to be a hundred per cent confident in what they have to say. So stuttering and pausing is going to make you think, “Well if he’s not sure how am I supposed to be?” (N:OT)

’Cos it’s like a rocky road, actually. You never know what’s going to be at the end, you never know what’s going to happen half way in between. You’ve got to keep that bond between you and the specialist at all times. (N:SP)

The main thing that makes the glaucoma positive is having the people around you and the support. But also the specialist, because obviously if you never had the specialist, you never know what would happen. (N:CS)

He speak to you, ask you how you are getting on … you feel like that’s someone that is interested in you, because he’s asking you everything that is important. (S:OT)

I was looking forward for the operation, because I read a lot of health books, and I understand what life is. So I start detoxing my body, and I try to get my blood pure and circulation, to get ready for the operation, eating the right stuff …. But I was praying as well … I believe God can do anything, as long as you ask Him sincerely. (S:CS)

You’re panicking and don’t know what to do … if you never had an operation before … an eye operation is something you don’t want to have first. (N:CS)

Post-surgery reflections

Michael looks back on his journey with regret at lost opportunity, but thankfulness that he can protect his children from the same ordeal. Nathan fears a bleak future, while for Selwyn, there is optimism and a return to former pleasures.

I wish I knew about this a lot sooner. If I was aware about it from day one, of my family history of it, then I would have thought about having regular eye tests, and probably wouldn’t be as bad as it is now. (M:CS)

I don’t really know what to expect. I mean I can’t really say how long I’ve got before I do lose both eyes, or before I lose one. So I don’t really look into the future. I try to take it one day at a time. (N:CS)

I can see better and better, now I can read that without glasses. So I have no complaint whatsoever, only praise. (S:CS)

Summary of the findings

A thematic summary of the narratives is shown in Figure 3. It comprises three overlapping elements. First is the outward journey, traveled in stages from life before glaucoma, across the threshold of diagnosis, through the labyrinth of treatment, towards the supreme ordeal of surgery. Typically, crossing the diagnostic threshold occurs in the specialist’s consulting room, and this pivotal character in the story makes up the second element. For these men, respect for the authority of the specialist as information-giver, surgeon, and director of the glaucoma care process was fundamental to facilitating the outward journey and the achievement of clinical goals. The stories also take the three men on an inward journey in which they change and develop, moving from one way of being to the next: from despair to hope, weakness to strength, towards a changed identity. Surgeon–patient relationships are central their developing effective coping strategies. Support in facing the ordeals ahead, challenges to take on new responsibilities, and helping to envision a meaningful life with glaucoma, are fundamental to fostering trust and maintaining motivation to continue.

Figure 3

Thematic framework for the patient’s surgical glaucoma journey.

Discussion

Self-care and resourcefulness are important dimensions in patients’ responses to chronic illness, and the doctor–patient relationship is central to developing effective coping strategies. Most complaints about doctors relate to poor communication, often within secondary care medicine where most medical education occurs.32 In describing their experiences all three patients draw attention to what they consider are the surgeon’s duties and obligations. These encompass not only expertise as a surgeon and information source, but also willingness to confirm their identity as people and individuals. Theorized as a relational and dynamic process, identity is always in motion, dependent in part, on social and contextual interaction.33,34 Here, each patient establishes his own identity in terms of what he perceives as his duties and obligations towards the relationship with the surgeon. For example, Nathan casts himself as keeper of the bond between himself and the surgeon along the ‘rocky road’ towards an uncertain future. Michael identifies himself as compliant and responsible, in opposition to the ‘designated identity’ bestowed by his first consultant. He is “grateful”, and places himself in the surgeon’s hands. Selwyn presents himself as an active agent in his own destiny, “So, we did the operation and it could not have gone better.”

These perspectives resonate with critiques of patient partnership, which question its meaning and warn against its acceptance as a new form of orthodoxy in health care.35,36 Partnership has been likened to patients ‘coming of age’; “Patients have grown up, and there’s no turning back”.37. However, critics point out that partnership reflects the way people are positioned in relation to one another, and the way the space between them is negotiated. Positioning is a fluid construct that varies from moment to moment within social interactions. Individuals shift from one perception of themselves to another, as their positions within various narratives are taken up or assigned. Unlike roles, which are fixed and formally defined, positions are contestable and tacit.38 In this regard the metaphor of surgeon as mentor is a useful one. A key function of mentors is to assist their protégés to reevaluate their perceptions and beliefs about issues and events. They are transitional figures, helping protégés ‘grow up’ and develop their identities.30 In so doing, mentors move between positions as the story unfolds.

Like guides, we walk at times ahead of our (patients), at times beside them, and at times we follow their lead. In sensing where to walk lies our art. For as we support (them) in their struggle, challenge them towards their best, and cast light on the path ahead, we do so in respect for their potential and our care for their growth.30

In the context of chronic disease, this conceptualization enables negotiation and renegotiation of the social space between doctor and patient in tune with clinical, emotional and developmental needs at any given moment. There is legitimate room for paternalism (walking ahead), participation (walking beside) and partnership (patient leading on the basis of experiential expertise). The challenge for glaucoma surgeons concerned to improve the surgical journey for patients, is to see and facilitate each individual’s movement and know where best to walk.

Good clinical care demands practitioners reflect constantly on their practice, listening to what patients need, as well as what is considered convenient or appropriate to provide. When policy dictates that money follows patients, this principle becomes even more salient.39,40 But determining patients’ needs, and sensitivities within limited consultation times is a daunting task for even the most experienced practitioner, and it is likely that more and better training in communication skills and patient-centered care will be required.37,41 Nevertheless, the value of narratives lies in their ability to enforce reflection.42 Therefore, gaining access to patients’ narrative accounts of their subjective experience is a worthwhile endeavor for glaucoma services.

The three stories presented here are not interpreted simply as ‘true’ reports on reality. Rather, they are viewed as separately constructed narratives that, as a collection, give deeper insight into the subjective viewpoints of glaucoma patients than could be reached in a single account. By reading each story in light of the others, they form the beginning of a community narrative that gives meaning, understanding and expression to the experience of African-Caribbean patients in the glaucoma care system. To make the experiences of the men portrayed here accessible to the wider community, their powerful accounts have been crafted as an intergenerational, interactive theatre piece by local African-Caribbean playwright and co-author (MG). Designed for a wide range of performance spaces, it aims to stimulate community engagement in addressing glaucoma awareness and under-utilisation of eye-care services among young African-Caribbeans. As importantly, it involves the community in defining best practice in relation to culturally sensitive glaucoma service delivery.

Conclusion

This paper has used the subjective experiences of three African-Caribbean glaucoma patients to demonstrate the usefulness of narrative research as a basis for reflective practice and a framework for approaching patients’ problems holistically. The patients’ stories were presented as an important resource for enhancing communication skills and patient-centered glaucoma care, as well as a tool in preventing avoidable glaucoma blindness.