Ethical considerations
Ethical approval was obtained from the local NHS National Research Ethics Service (NRES) and from Sunderland and North Tyneside CCGs where practices that recruited participants were located. Approval was also obtained from the University of Sunderland Research Ethics Committee. IG obtained an enhanced disclosure Criminal Records Bureau (CRB) check due to working with a vulnerable group.
Study design
A qualitative study was conducted as part of a PhD. A grounded approach was used; this was informed by the more recent work of Adele Clarke [24] rather than traditional versions by those including Glaser and Strauss [25] that require the researcher to exclude preconceived ideas. Clarke’s methods seek to uncover multiplicity, the fluidity of ideas and points of difference rather than commonality; here they were used to facilitate recognition of complex, changing experiences of depression in later life and the range of differences that older people report in their experiences of having depression. Empirical data were generated through in depth semi-structured interviews [26] based on a topic guide developed from the literature. Observational notes were made by IG during interviews to support analysis. No relationships were established with participants prior to the study commencing.
Recruitment and sampling
Letters inviting GP practices to recruit patients were sent via NyReN (Northen and Yorkshire Research Network) to 169 practices along with information about the study explaining reasons for the research and what would happen. GPs working in three practices agreed to recruit patients; at their discretion they identified and sent invitation letters and information to patients over 65 with depression. Data collection, analysis and sampling were carried out iteratively by the lead author.
The first five respondents were interviewed, thereafter a theoretical sample of older people were selected using demographic data which indicated their potential to help explore further or discount ideas being developed. Early interviews (P1–5) indicated a need to gather data from participants who varied in age, gender and socioeconomic status. Accordingly, participants were sought for the second set of interviews (P6–10), which in turn indicated a need for data from those living in deprived inner-city areas and/or who had experienced long term or severe depression. Participants were sought for the third set of interviews as such (P11–16). Selecting patients on the basis of their age and severity/duration of depression was at the discretion of GPs and disclosed by participants at the time of interview if they were willing. The sample size was determined by the number of participants needed to achieve saturation and allow for the production of a full and detailed account of the data.
Interview schedule
The initial topic guide [see Additional file 1] included open ended discussion points and prompts to encourage participants to disclose as much information as they felt comfortable with. This was developed as interviews and analysis progressed, becoming increasingly focused on participants’ depression narratives and influences on this, the impact of other people including GPs on their depression narratives, what the differences in their views of depression and its management were, content of their narratives and when and how their views changed, their personal experiences of depression, views of depression and how they felt about seeing GPs for depression. The grounded approach ensured care was taken to use the same vocabulary as the older people as prompts during the interview. After early interviews and analysis (P1–5), a further set of participants were recruited (P6–10) to inform proceeding interviews. This process was repeated with a third set of participants (P11–16) until data saturation. Written consent was obtained prior to data collection and interviews were transcribed verbatim by IG and an independent transcriber.
Analysis
Transcripts were initially coded and analysed iteratively by IG using the constant comparison method and stepped model of grounded theory [25] where three levels of analysis were undertaken. The constant comparison method informed theoretical sampling of participants where early ideas were tested with subsequent participants and found to either support or disconfirm developing ideas. Coding and interpretations were inspected and discussed by three others in the research team at monthly meetings and for each level of analysis in a process of triangulation [27, 28] to increase validity. Interpretations were available to participants on request but this was not taken up and no feedback was given.
In line with the stepped model of grounded theory three levels of analysis were carried out. Open codes were derived from the data during first level analysis and emergent axial codes noted, grouped together and categorised. This informed the second level of analysis where possible themes were explored further with later participants. These themes were supported with more data were developed into axial codes where a typology of older people with characteristics found in their narratives formed three distinct groups positioned on a continuum.
In the larger PhD study typologies for both older people and GP were developed. Third level analysis brought these two data sets together in a theoretical model [29]. The typology developed from second level analysis of older people’s data only is reported here as their views are underrepresented and seldom reported in isolation. Doing this underlines the importance of their voice being heard and allows an in-depth account of ways they communicate about depression.
A series of situational, social and positional maps [24] were used to explore the contextual, background and key influences in the data and enrich interpretations. Observations made during interviews (IG) were also considered in analysis and assisted the development of groups in the typology.
Findings
Interviews were completed with 16 older people at their homes and lasted 1–2 hours; only participants and the researcher were present in all interviews. The sample consisted of 10 women and 6 men with a reported age range of 67–88 years. Data from all participants was included in the analysis plus observational notes made by IG during interviews; no participants refused to participate or dropped out, and there were no repeat interviews. No characteristics about the interviewer (IG) or influences over participants’ views were reported. Described here is a summary of axial codes derived from first level analysis of interview data: components of narratives, constructions and experiences of depression, narrative agendas. This leads to the typology consisting of Superficial Accepters, Striving to Understand and Unable to Articulate categories.
Components
All participants recognised their narratives of depression were made up of different components which they shared or withheld from others. The most commonly cited components derived from open codes identified in early analysis of data were: descriptions of what depression feels like, what depression means, explanations for its cause, minimising depression, private and public stories and preferences in what to tell GPs. Differences between the ways older people talked about depression, language they used, what they told and withheld were prominent and began to define categories of the typology.
Constructions and experiences
While all participants described their constructions and experiences of depression they did so to differing degrees of detail using a variety of vocabulary. Not all used the term depression saying it was an inaccurate reflection of the problems they were experiencing and offered their own explanations for it. Some did not see depression as a medical problem or minimised theirs compared to others’ who they saw as having “proper” (P3) depression. Others’ ideas about their depression did not appear as concrete where they were starting to put their experiences into words or questioned what had happened to them rather than providing explanations or views.
Narrative agendas
Participants appeared to have differing agendas in their narratives of depression; some focused on certain aspects of their story regardless of any interview prompts, others were less focused and seemed to talk through ideas without any obvious direction. The remaining participants’ narratives were brief and closed, with conversation about depression minimal. All explained their reasons for telling their story in certain ways; they were motivated by how others saw them, telling their story for the first time, consolidating their ideas or regaining control in some way. Some did not want to talk directly about depression yet their narratives about their life contexts revealed how they saw depression in themselves and the impact it had on what they shared and withheld about depression.
“I want to forget [experiences of depression], I don’t want to think about it cos it just brings it all back to me.” (P1).
Further data analysis led to the identification of a typology consisting of three distinct categories: Superficial Accepters (n = 5), Striving to Understand (n = 6) and Unable to Articulate (n = 8). These categories were shaped by the way older people spoke about depression in their interviews, the way they reported telling their stories of depression to other people including GPs, information about their depression they shared and withheld in comparison to each other and what they said about their experiences of seeing GPs for depression. Geographical location, affluence, reported severity/duration of depression and participants’ ages were not found to be influential over the categories.
The typology indicates variation in participants’ understanding and acceptance of depression and in their constructions and narratives at different positions on a continuum (Fig. 1). The continuum is used to emphasise that older people’s positions are not fixed, and that flexible, “porous” [24] boundaries are likely to exist between categories. This flexibility accounts for participants who describe change in ways they conceptualise their depression during their life prompting a move between categories, or where participants display characteristics in their storytelling from two categories.
“all of a sudden the ECT [electroconvulsive therapy] had obviously sorted out my head and I said to myself, ‘look, this is silly, they are obviously not treating you for cancer they are treating you for mental problems’. Once I realised that then it [the depression] started to sort itself out.” (P8).
Analytical maps were used to set out multi factorial relationships identified between open and axial codes, around which analytical memos were developed to form categories of the typology. These were based around components of their stories they shared and withheld, their constructions and experiences of depression, their narrative agendas and perceived indications of change in ways they talked about depression.
Superficial accepters
All participants in this category talked of their depression willingly and it appeared they had accepted it. Further probing revealed denial of having depression where they either compared themselves to others with depression in its “true form” (P5), stated theirs was not a “proper” (P3) illness or commented on others with depression appearing not to see themselves in the same category.
“I would feel a bit down but not to the state that I couldn’t get out of the chair like I’d seen in my wife.” (P5).
“I never called it as depression I just felt awful, you know, you feel sad, I think sad is the word that I’ve always used.” (P15).
This tendency to deny or minimize their depression conflicted with the open and accepting way they initially talked about it. With probing, some comments revealed insecurities and stigma about having depression, which possibly stemmed from concern about a negative effect on their outward image.
“People don’t want to listen to you, or worry about your illness, that’s how I feel.” (P4).
Many of these participants also revealed a stoical desire to hide their depression from their community or workplace for fear it would influence others’ perceptions of them, also indicating they may accept their depression only partially.
“I still did my job alright you know, I didn’t have any problems. If I did I didn’t let anybody know about them I can tell you… It was a secret. My secret you know, I just got on with my job. Was never off sick.” (P14).
They demonstrated an inflexible agenda in their interviews, returning to the same topics regardless of any probing. For example, they gave detailed explanations about why they had depression, ensuring their reasoning and convictions about their depression were understood. This component of their narratives appeared practiced and lacked detail of their feelings or their views, as if they had prepared it for other people.
“I would like to know what’s causing it… I have been very successful - I have been a head in four schools, successful as an artist, if I say so myself I am well liked in the village… so there is none of those things. It’s just…tiredness.” (P9).
Many in this category portrayed themselves as experts on depression by reporting they had greater knowledge of their depression than healthcare staff and/or that their symptoms were not fully understood. In doing this some revealed anger and distrust of healthcare staff, expressing dissatisfaction with many aspects of their treatment or with doctors for putting a label on their depression.
“Have you got any ailment that you always think oh well I know more about that than any of the doctors do? Well it’s the same thing …. I’ve given a lot of thought to it and read [about] it myself and understand exactly what my condition is, but a lot of them don’t.” (P3).
Participants frequently referenced achievements in their education or careers. They often described facing a loss of status in some way, through career or position in family, and seemed to attach a lot of importance on how they presented themselves to others. Their style of talking about their experiences of depression focused on presenting facts, without giving much detail of how it felt or their views of it; they also tended to be articulate and the public components of their depression narratives were spoken with conviction. Although participants in this category were mostly men this did not appear to influence other characteristics; their willingness to talk about their experiences may simply have been because they were more sociable or better socialised through having a strong support network (as described by women) or a prominent career (as described by men).
Striving to understand
A key characteristic of this category was that many used the interview to talk about their depression for the first time to anybody in such terms, or in any depth outside GP consultations. Some reported their motivation for taking part to be to offload to somebody or to “come clean” (P13). These older people were the most emotionally open of all categories in the typology when describing their thoughts and showing their feelings about depression.
“I’ve talked to you more than I’ve ever talked to anybody [about my depression].” (P15).
Some participants described testing different explanations for their depression aloud or practicing their story, sometimes as a way of reconnecting with other people. In doing this they appeared to be coming to terms with what had happened to them and were trying to clarify and articulate their understanding of depression.
“I was detached from everybody else, I didn’t know why, and I didn’t know how then to reconnect and re communicate, it was very difficult.” (P10).
Participants’ narratives were often long with little need for prompting; they tended to start talking immediately on contact, seemingly determined to tell their story. Their narratives could sound confused when they were remembering chronological events or what had happened to them, and they often appeared lost in their thoughts during interviews.
All participants in this category explored possibilities around their constructions of depression aloud. Though this category’s constructions of depression were not as developed as others, they described seeing it as an illness, a weakness of character, a normal feeling in old age and even questioned whether depression existed as a concept at all. They tended to alternate between the labels for depression possibly as they were still establishing their ideas and may not have been certain why they had been diagnosed with depression. Their uncertainty led to numerous contradictions in their narratives, but also prompted changes in their perspectives influenced by consolidating their ideas in the interview. For example, one participant had seldom spoken to anyone about her depression “I’ve talked to you more than I’ve ever talked to anybody” (P15) but by the end of the interview she felt older people with depression should “talk to their family if they can and get them to understand; a lot of people don’t understand depression.” (P15). Similarly, another interviewee described how he told his GP about his depression initially by talking about his physical symptoms,
“I didn’t tell him [the GP] the details I just said, it started off with me feet and then I got a rash up me back and even in my face.” (P13).
By the end of the interview P13 was calling his condition depression and seemed more comfortable talking about it in terms of emotional experiences.
People in this category were clear that the right timing was essential to opening up about their depression. Many described their interviews as a starting point to talk to others about their depression despite uncertainty about being ready or concern about being “a burden” (P13). Others spoke of having to “face up” (P8) to their depression or having ignored it in the past now felt ready to explore it further. Bereaved participants were common in this category, reporting this as a trigger for their depression but needing to pass through a crisis point before they could look back and reflect on their experiences out loud and share this with someone else.
“She [the counsellor] said what I want you to do is write a letter, put your thoughts on paper, and, you know, I couldn’t do that, not at that time I couldn’t, I was too upset, like.” (P6).
“I intend to come clean today, because I tend when the family ring me up I’m always alright, even when I’m not, and…I don’t want to be a burden.” (P13).
This category may not have established what they felt comfortable sharing and so switched between private and public components of their narratives. For participants in this category the opportunity to establish what was private and what they were willing to share in hindsight of depression appeared empowering as their depression narratives grew increasingly confident during interviews. This suggested that confirming their story aloud may have helped regain a sense of control which they typically described having lost when depressed.
“If I needed to ask them for their support they would be absolutely furious that I hadn’t done it [earlier], but my feeling was, I’ve got to cope with it… It’s just silly, but if I told my son that he would have said mum, for heaven’s sake…” (P10).
Unable to articulate
Older people in the Unable to Articulate category had difficulty articulating their experiences, understandings or feelings about having depression into words, and appeared disengaged with the idea of it. They accepted they had depression and appeared resigned to it. This category revealed little more than the basic facts about their depression and while they cited a number of traumatic life events, they provided minimal detail of these by closing conversations. They described dealing with depression by blocking out trauma or disconnecting from it, which led them to withhold much of their depression narratives.
“I want to forget, I don’t want to think about it cos it just brings it all back to me.” (P1).
“My family history is so appalling…it’s important that you know. I probably had one of the unhappiest childhoods [I’ve] ever heard of in my life… father committed suicide, sister committed suicide, mother who attempted suicide on numerous occasions… But that childhood, whether that has any bearing, I don’t know.” (P9).
Willingness to talk was low among participants in the category but there was variation. All tended to open up more about their daily lives or activities and doing so gave some insight into their constructions of depression, underlining the importance of life narratives for this category. It was common for participants to start talking about an experience of depression then quickly draw the story to a close.
“I sat here for weeks you know, couldn’t go out anywhere it affected me so much, but luckily I’ve got over it.” (P2).
Two participants avoided talking about depression completely in interviews but still gave insight into their depression. P12 focused on heartbreak from losing people she loved during her life and this was how she defined her depression. Her narrative was stoical and she came across as detached from her depression, not wanting to talk about it at all. Similarly, P1 avoided talking about her depression, instead talking about pain in her back which seemed to be a way of expressing her feelings about her depression. The most extreme example within this category was P11 who said very little, and then only saying a few words about her life with heavy prompting. She appeared numb to her feelings and not to care about her depression or herself any more. She listed traumatic events that had happened during her life with brief, closed statements and minimal explanation.
There was a feeling within this category that their depression had completely taken them over for a long time, that they had no hope of things changing and no desire for exploring their own feelings and understanding depression. They described other people (e.g. doctors or family) or the medication to be in control of most aspects of their lives, and when asked how they felt about having depression said.
“Well I’ve more or less accepted it, I’ve not got much choice.” (P11).
People in this category had relatively fixed views on the reason for their depression (e.g. their personality) indicating they had long accepted the idea of having depression but were less likely to describe pivotal events or decisions to change their narratives than other categories.
They were unlikely to use the label depression, instead not talking about it directly or expressing it through physical symptoms such as “heartbreak” (P12) or “my back” (P1). P16 described many physical problems including tinnitus and pain on her face, explaining her depression by talking about these; she did not seem able to face her psychological distress or explain it any other way.
Participants in this category reported severe episodes of depression throughout their lifetimes managed in both primary and secondary care. They all described trying a range of medications and treatments appearing resigned and disconnected from these experiences. Their views were passive about how their depression was managed and their descriptions suggested they were used to doctors making decisions without their involvement.