Living together with age-related macular degeneration: An interpretative phenomenological analysis of sense-making within a dyadic relationship

Design

To preserve the depth of experience, we adopt a case study design using joint interviews over time (Allan, 1980; Arskey, 1996) and interpretative phenomenological analysis (IPA; Smith et al., 2009). The idiographic analysis of a case study offers concrete, context-rich knowledge which is better suited to research questions which demand the exploration of nuance, fluidity of meaning-making and a changing sense of identity in a particular context (Flyvberg, 2006).

We worked within a hermeneutic phenomenological framework (Heidegger, 1962/1927; Smith et al., 2009). Heidegger argued that we are thrown into the world and must learn to live within the constraints of it. This means our analysis was led by an interest in the historical and social context of people’s lived experience, their interpersonal relationships, the fluidity of time and our ‘being-toward-death’, for example, coming to terms with our own mortality.

Participants

This case study was selected as a ‘critical case’ (Flyvberg, 2006) from a larger mixed method study investigating the impact of AMD on quality of life (Burton, 2013). Across the larger sample, we had observed the significance of patients’ living circumstances in how they managed AMD; those who lived alone struggled and sometimes felt socially isolated. We therefore wanted to explore in-depth the experience of those living with a partner. Jack and Sally were selected as a critical case as they were the only couple in the sample who both had AMD.

Jack and Sally were both White British and had been married 60 years. Jack, aged 82 years, had been diagnosed with dry AMD in one eye and wet AMD in the other which had become a scar. His wife, Sally, aged 77 years, had been diagnosed with dry AMD since the age of 55, but had recently been told at clinic that her vision had deteriorated significantly. Both had co-morbidities – Jack was diagnosed with chronic obstructive pulmonary disease (COPD) and Sally with diabetes, osteoporosis and glaucoma.

Data collection

We interviewed the couple in their home three times: soon after Jack’s diagnosis, after 9 months and after 18 months. Interviews lasted 1–2 hours, were audio-recorded and transcribed verbatim. Questions were open ended to investigate the complexity of the couple’s experience. We asked about the following: diagnosis, daily activities, relationships and thoughts about the future (for example: ‘tell me about when you were diagnosed’, ‘What would you do in a typical week?’, ‘What do you think things will be like in the future?’). Follow-up interviews began as follows: ‘how have things been since the last time we met?’ to ensure interviews were led by participants’ perceptions and concerns.

Data analysis

IPA (Smith et al., 2009) was employed with the dyad as the unit of analysis. The joint interviews were analysed as a co-constructed account because they told one meshed together story of the couples’ life together (i.e. often finishing each other’s sentences).

Preliminary analysis of the initial interview was undertaken before conducting the second and third which meant specifics in Jack and Sally’s account could be examined again at 9 and 18 months. Themes identified in later interviews were added to those established from the first to develop the themes. Several iterations of themes across interviews were discussed within the research team in order to develop the final super-ordinate themes. We used Yardley’s (2000) criteria to judge the quality of this empirical work.

Ethics

Ethical approval for this research was granted by a University Ethics Committee and the relevant National Health Service (NHS) Ethics Committee.

‘It chops your life in half’: the disruption of vision impairment

In this theme, we see Jack and Sally trying to make sense of the impact of AMD. Sally struggled to make sense of AMD as an age-related condition because she was diagnosed so young (at 55 years) and perhaps because of this, as she aged, she could not distinguish between AMD and what we might call ‘normative ageing’. ‘[T]his macular degeneration’ did not exist in Sally’s consciousness as something discernible from the ageing process per se and the identification of a diagnosed condition as the cause of her vision impairment did not help her make sense of it:

Jack’s response revealed cynicism to the promised progress of medical science. The introduction of a diagnosed condition brought with it hope of a cure, yet Jack had been told treatment would not cure it (‘They said it won’t cure it but it’ll stop it getting worse’). Perhaps knowing the effects of AMD cannot be reversed is what makes this couple assume the condition to be something indistinguishable from ageing. Hence, if we expect things to improve, we are expecting too much. In this way, Jack was attempting to accept his condition and its implications, but there was a sense in this first interview that he was not ready to do that. Sally identified why: frustration:

Sally’s frustration was directed at inabilities which threatened her sense of self because she was unable to continue to do previously taken-for-granted activities. For example, Sally described having kept a cashbook to manage the household finances and keep her brain active, but had to give it up due to poor vision. Jack directed his frustration at the vision aids supplied to help manage everyday tasks:

Aids such as magnifying glasses should help the couple to put their vision impairment to the back of their minds and maintain coherent senses of self through engaging with activities they had always enjoyed. Instead, at this first interview, the presence of AMD had disrupted the flow of their everyday lives and forced itself to the forefront of their minds.

Despite the frustration described, stoicism was evident in their co-constructed reality. Instead of allowing loss and frustration to dominate, they kept things in perspective by comparing themselves to others:

Jack was keen to stress that AMD did not dominate their lives, but it is difficult to accept this statement at face value as in interview 3 Jack suggested that having AMD ‘chops your life in half’. This phrase shone through in analysis and illustrated how AMD had infiltrated all aspects of their lives and had challenged their senses of self by revealing their inadequacies. The couple attempted to rationalize this by attributing these inadequacies to the ageing process, something they could not change (Jack: ‘It’s not so much my vision, more because of my age really’). This presented the opportunity for coherence through the maintenance of an ‘ageing self’ rather than submitting to a passive ‘sick-role’ (Parsons, 1951).

Managing mutual deterioration

Despite the difficulties caused by AMD, Jack and Sally continued to display autonomy. They described a typical week which demonstrated how they shared out tasks and where they sought support:

Even though this extract illustrates the couple’s ability to plan and take charge of household duties, their description felt monotonous and dull. There was no reference to enjoyment or social engagement and this felt symptomatic of enforced changes to their life as a result of AMD and their co-morbidities.

There was a coexistence of autonomy, dependency and increasing disabilities in this couple’s account. These competing forces continued to ebb and flow throughout the course of the 18 months when these interviews took place. One example of this was Jack’s account of his interactions with his ophthalmologist:

Jack’s dissatisfaction appeared to arise from a misunderstanding of his condition – there was a possibility that the dry AMD in Jack’s second eye could become wet, which if not identified and treated quickly could lead to a second scarred macula, and consequently severely impaired vision in both eyes. In such situations, patients are told that if they notice a worsening of vision to go to the emergency department at hospital to get fast-tracked for treatment. Clearly, this message was either not conveyed in his consultation or not received by Jack, which led to this confusion. This example illustrates another source of frustration for Jack – his frame of reference in which to make sense of the information he received from the clinical team was Sally’s experience. Sally’s co-morbidities (particularly diabetes which may also lead to vision impairment) made her eligible for regular check-ups, which left Jack feeling neglected and uncared-for (‘I am diagnosing myself, in a way’). Jack’s application of his understanding of Sally’s AMD to his own meant he did not challenge or seek additional information about his condition and as a result he came away without the full story. This may not be related to age, many of us will have experienced similar frustration on leaving a situation and thinking of the perfect question or comment several hours later. However, to Jack, it was another symbol of his depleting agency.

Similarly, Sally described a situation which revealed her struggle with depleting agency. After agreeing to pay by monthly installments for her gas supply, Sally noticed an error on the bill (‘I looked at the bill and I thought it was £65, when I looked again £650, well I knew that possibly […] Couldn’t be right, and so I had to, I rang them up and told them and they did send someone Friday, and it was definitely way out’); instead of having confidence in this observation she revealed a feeling of self-doubt (‘I’d probably worry a bit more about things like that, otherwise I wouldn’t have let that, I’d have known I was right and that was it’). As she described, the experience she began to realize that her independence may be under threat. Sally’s faith in her ability to make sense of the finances was now dependent on her ability to trust her senses; something she no longer felt able to do. This was a feeling with which Jack could empathize (‘you start to get unsure of everything’). Such thinking was unwelcome and felt incongruous.

There were other signs of an increasing awareness of challenges to their independence (Jack: ‘I worry about shopping and it, just managing the basic things you know? I don’t think any farther than that really’). When thinking about such matters across the interviews, Jack’s use of humour was a self-confessed coping mechanism.:

The banality of everyday life seems to have been overtaken by a feeling that everything is a struggle and instead of ‘just tak[ing] it in your stride’ like they did ‘at one time’ (Sally) it has become a source of concern. Like the use of humour another source of solace this couple had was each other.

Implications for practice

The couple was uncertain about the differences between their clinic appointments with HCPs, the possibilities of dry AMD becoming wet and about the benefits of registering partially sighted. These misconceptions highlight the potential for wet AMD to be missed and left untreated and years’ postponement in seeking non-medical support. Declining support because it is tantamount to defeat and dependence is not uncommon among older adults (e.g. Ells, 2001). Society’s unchallenged view of dependency as the antithesis of autonomy (Fine and Glendenning, 2005) has meant that older adults living with disabilities view themselves as weak if they seek support because it destroys their sense of agency. From Galvin and Todres’ (2011) typology of well-being and Koren’s (2011) continuity-change continuum, we have learned that multiple, layered identities exist and that positive–negative attributions are unhelpful for making sense of the ambiguity experienced in older age. Jack and Sally displayed decisional autonomy and maintained a level of independence but were reticent about handing over executional autonomy to others.

The Royal College of Ophthalmologists (2009) guidelines focus on making a clear diagnosis and communicating treatment options. HCPs are asked to inform patients of interventions which might help them come to terms with their vision loss, retain independence and improve their well-being and quality-of-life. The guidance also suggests that emotional support or counselling options should be offered. However, Jack and Sally exhibited lack of awareness of non-medical support available to them. Failure to adequately adhere to guidelines may result from stretched resources (i.e. time) within NHS practices and discontinuity in services which are spread across sectors. In the United Kingdom, the NHS provides ophthalmology clinics to which patients are usually referred by private high street optometrists. In addition, there are a variety of third-sector organizations offering support (i.e. Royal National Institute of Blind People; RNIB). This disparate source of non-medical support means that patients need to be proactive in seeking it, but it also means they cannot access aids and support to which they may be entitled if they have not been informed about them. Thus, without a coordinated and accessible formalized network of information, people living long term with AMD may struggle in isolation.

Limitations

The case study has been criticized because it cannot be used to make generalizations to the population. This criticism wrongly assumes a nomothetic stance to be the only option for science. Nomothetic research depends on representative samples to make predictions based on hypotheses tested; idiography enables rigorous analysis of data at the individual level leading to conceptual generalization (Yardley, 2000) and transferability (Lincoln and Guba, 1985), and both are needed in the study of human behaviour (Harre, 1984). The idiographic analysis of a case study offers concrete, context-rich knowledge (Flyvberg, 2006). It also allows an in-depth analysis of the historical and social context of the lived experience of AMD, that is, how a couple adapts to AMD within the restricted freedom of their socio-cultural situation (Spinelli, 1989).