Copyright Sociological Research Online, 1997

Elliott, H. (1997) 'The Use of Diaries in Sociological Research on Health Experience'
Sociological Research Online, vol. 2, no. 2, <http://www.socresonline.org.uk/2/2/7.html>

Abstract

Diaries have been relatively neglected as a sociological research method. This paper highlights the value of diary research, drawing on the literature on auto/biographies and health service research as well as a qualitative study of need and demand for primary health care, which used diaries and linked in-depth interviews.

In particular, data from the study are used to illustrate the role of the 'diary-interview' method in offering a means to 'observe' behaviour which is inaccessible to participant observation. Five key advantages of the diary-interview are discussed, namely the potential of the 'diary-interview' method to accommodate different response modes; the extent to which the method captured diarists' own priorities; the importance of the research process in illuminating the contexts within which helpseeking took place; the role of diaries as both a record of and reflection on the experience of illness and the value of the diary-interview method as a means of understanding what is 'taken for granted' in accounts of health and illness.

Keywords:

Diaries; Health Services Research; Need And Demand; Primary-Care; Qualitative Methods

Introduction

1.1

This paper is based on a review of the extensive, but patchy literature on the use of diaries in sociological research. It explores some of the themes arising from this review in the context of a study of need and demand for primary health care, which used diaries and linked in-depth interviews. The study formed part of a research programme, based at the National Primary Care Research and Development Centre (NPCRDC) at the Public Health Research Resource Centre (PHRRC) at Salford University, to develop appropriate methods to investigate demand for formal and informal primary care (Nicolaas et al, 1997). One of the aims of the project reported here was to assess how valuable qualitative health diaries are in this field.

Diaries as a Sociological Method

2.1

The study was informed by two distinct sources, which have developed in parallel, with little cross-fertilization, namely the literature on auto/biography and 'life documents' and literature on diaries within health service research.

Diaries in the Literature on 'Auto/Biography' or 'Documents of Life'

2.2

Allport (1943) identifies 3 distinct models of diary familiar in everyday life: the intimate journal, in which private thoughts and opinions are recorded, uncensored; the memoir - an 'impersonal' diary, often written with an eye to publication; and the log, which is a kind of listing of events, with relatively little commentary. While the memoir may assume an audience, the log and the intimate journal are essentially private documents, written primarily for the diarist themself. They are therefore constructed within the diarist's own frame of reference and can assume a forgiving, understanding reader (Allport, 1943; Jackson, 1994) for whom there is no need to present a best face.

2.3

Within the autobiographical tradition, diaries are one of the 'documents of life', that is a 'self-revealing record that intentionally or unintentionally yields information regarding the structure, dynamics and functioning of the author's mental life' (Allport, 1943: p. xii). The use of such documents is common within historical and anthropological research, but has been rather neglected within sociology (Plummer, 1983). There is however, a strong tradition of autobiographical and diary-based research within the feminist research (Personal Narratives Group, 1989; Swindells, 1995; Stanley, 1995). Part of this project has been the recovery of private documents, including diaries, written by women, to shed light on 'ordinary' lives (Hampsten, 1989). This kind of work has been influential in broadening the focus of autobiography from the 'elite few ' (Stanley, 1995: p. 13) and making visible experiences which are often hidden. Recently there has been a growth of interest in auto/biography within sociological research. This has drawn on a wealth of sources, including lonely hearts columns (Pearce, 1996) and Quaker meetings (Collins, 1996) and has highlighted the even greater variety of autobiographical texts in everyday life, ranging from published memoirs to television and radio programmes such as This is Your Life and Desert Island Discs (Stanley, 1992). However, within this literature, there is relatively little discussion of the scope for diary-based research. For example, a trawl through the journal Auto/Biography 1992 - 6 revealed only one study which used diaries - in this case the published diaries of Anais Nin (Jackson, 1994).

2.4

Despite their relative invisibility, diaries have a contribution to make to sociological research which differs from life history accounts or in-depth interviews more commonly used in the literature on autobiography and on qualitative social research methods. Diaries track the 'contemporaneous flow of public and private events' (Plummer, 1983: p. 170). They are not given 'all of a piece' - such as a life history might be - but rather are written discontinuously, either daily or over longer intervals of time (Allport, 1943) and as such provide a record of an ever-changing present. Rather than documenting the present, other autobiographical texts or life documents - such as letters, for example, tend towards making retrospective sense of a whole life or towards retelling significant moments - of epiphany or crystallization. This proximity to the present, the closeness between the experience and the record of experience means that there is the perception at least that diaries are less subject to the vagaries of memory, to retrospective censorship or reframing than other autobiographical accounts.

Researcher-Driven Diaries

2.5

The second strand of literature which I have drawn on are research diaries which are a research-driven attempt collect information, qualitative or quantitative, about a particular topic. Within applied qualitative research, the use of diaries is relatively rare. The method of choice for applied qualitative research tends to be the in-depth interview (Silverman, 1996).

2.6

There is a fairly large body of applied social research in the health field which have used structured diaries, in which informants are invited to 'log' items from a list of health action they have undertaken, rather than open diaries. In particular, health diaries have been argued to present the optimum way of investigating helpseeking for episodes of illness for reasons which resonate with the discussion of the autobiographical literature above - namely the ability to capture events close to when they unfold and the potential to trace events over continuous time (Verbrugge, 1980; 1985; Mechanic, 1989). The literature on both qualitative and quantitative methods has highlighted the value of diaries in recording routine or everyday processes (Pavis et al, 1996; Verbrugge, 1980), whereas in retrospective interview informants are more inclined to offer biographical narratives or general opinions (Williams, 1984; Cunningham-Burley, 1990; Pavis et al, 1996; Pierret, 1996). These qualities have been identified as important because it has been argued that health care utilization often involves the consideration of symptoms which are trivial and therefore easily forgotten - especially if they have not been treated by a professional and therefore lack medical legitimization. Therefore there is a need for prospective data to track events as closely as possible to when they occur (Verbrugge, 1980). In addition, a longitudinal, prospective design has the potential to link demand for care to the experience of illness as well as to relatively stable characteristics such as health status/attitudes and to trace decision-making processes over time.

2.7

To a certain extent, the methodological stance adopted by health service researchers here is that diaries are a substitute for accurate scientific observation, in settings from which the 'scientist' is absent. The potential to use diaries as a vehicle for research informants to observe situations which researchers cannot access has been explicitly drawn out within the context of ethnographic research (Zimmerman and Wieder, 1977). Zimmerman and Wieder advocate asking informants to keep diaries on the subject to be studied. The written accounts are then elaborated or developed in an in-depth interview based on the diaries. Thus diaries form part of a research process, in which informants actively participate in both recording and reflecting upon their own behaviour.

2.8

The 'diary-interview' method is useful in accessing phenomena which are not amenable to observation because they are unfocused or take place outside set time or environmental boundaries and are likely to be altered by the presence of an observer (Zimmerman and Wieder, 1977). Responses to illness represent such a phenomenon. Bloor (1985) undertook a participant observation study of decision-making about illness, set in a boarding house - what was in effect a semi- institutionalized setting. He found that this study, although fruitful in many respects, was frustrating because his insights into illness behaviour were partial and random. Tracing decision-making processes outside an institutional setting (in the community) would be even more problematic. Yet need and demand for primary care are most usefully investigated from a lay or community-based perspective (Rogers and Elliott, 1997). Research based on records of consultations with primary care professionals or on fieldwork with informants using formal services can offer only an incomplete picture of health care use. The majority of illness episodes do not come to the attention of health professionals - indeed, within primary care, health professionals see only the tip of the illness iceberg (Dunnell and Cartwright, 1972; Banks et al, 1975; Freer, 1980; Scambler et al, 1981). Symptoms are managed not only by bio-medical professionals within the formal health services but also through self- care, treatment by lay others and alternative healers. Moreover, it is not necessarily the most severe symptoms which come to the attention of the formal services (Zola, 1973). Rather than severity of symptoms alone, the relationship between need and demand for healthcare is mediated by what Mechanic (1989) termed 'illness behaviour' - the ways in which people recognize, interpret and respond to episodes of illness. Illness behaviour is shaped by a range of processes and factors including socio-cultural background, personality traits and social contingencies as well as past medical experiences and the availability or otherwise of advice and support of lay others and familiarity with symptoms experienced.

2.9

In stressing the importance of lay people's decision-making in directing the use of formal and informal primary care, it would be misleading to imply that response or non response to illness are necessarily the results of conscious choices. Individuals may not be, or may not perceive themselves to be, in a position to make choices between alternative courses of action. Moreover, decision-making implies a reasoned process which may not represent people's experience of health care. This may be particularly true for people who have been involved in consultative processes for long periods of time. A recent qualitative study of psychiatric service users' subjective experience of their treatment reported that informants could discern little coherence to their treatment, nor had they any sense of progression or purpose. Instead informants typically experienced apparently aimless movement between services and felt they had little control over decisions about accessing care (Spicker et al, 1996). Furthermore, decision-making processes are fluid. Even when a decision to take action about a symptom is made, it is subject to revision. Resolutions to consult may be postponed, overturned or derailed by more pressing concerns (Bloor, 1985).

2.10

Lay decision-making about health and illness is thus socially situated and context specific. In designing a study on the use of formal and informal care, the aim was to develop methods capable of reflecting the diverse and highly individualistic ways in which people respond to illness and the role of biographical, environmental and social contexts in shaping helpseeking. The following discussion of the data from the pilot study illuminate the potential of the 'diary-interview' method, outlined above, to do this, drawing out the particular advantages of less structured format and the research process within which the open diary was nested.

The Study Design

3.1

Eight diarists were selected from a subsample of eighty informants from a study designed to ascertain prevalence of musculoskeletal symptoms and patterns of helpseeking for these. This study was undertaken as part of the NPCRDC Population Health Need and Demand programme and involved a population survey, from which a subsample of respondents were selected for a clinical examination and in-depth interview. A report of the study will be available from the NPCRDC at Salford in Autumn 1997. Thus all the diarists were, to varying extents, aware of having ongoing musculo-skeletal problems - either because that was a description they would use about themselves or because they believed from their involvement in the earlier work that was where the primary research interest lay. The diary study was concerned with people's general health and the interview and conversations which accompanied the diaries played an important part in changing the focus from musculoskeletal problems.

3.2

Informants for the diary study reflected different utilization patterns of informal and formal health care, age, sex and caring responsibilities, duration and severity of symptoms. We were initially concerned that the pool of informants would be suffering from 'research fatigue', since they had already completed a self-assessment questionnaire as well as participating in a clinical examination and an in-depth interview. However, only one of the people approached to participate in the diary study was unable to take part. Indeed most diarists seemed to have found participating in the earlier research project rewarding and were keen to be involved again: some felt flattered that they had been 'chosen' to participate.

3.3

Informants were asked to keep diaries for a three week period in autumn 1996. All the fieldwork was carried out by me. Most of the informants were visited three times in total during this period - once to introduce the diary, once to pick up on either the first or second diary drop and finally to conduct an in-depth interview based on all three diaries (informants returned the final diaries by post, so that it could be read before the interview). On some occasions, diarists had to cancel appointments and in these cases the diaries were posted back to me and one informant was unable to conduct a final interview because he was suddenly hospitalized. Often the conversations when the researcher called to pick up the diary were lengthy and revealing, although only the final interview was tape-recorded and transcribed. Notes were taken during the conversations which were not tape-recorded. It has been indicated in the paper whether the data cited originate from fieldnotes, interviews or diaries.

View .pdf version or download MS Word 6 version of the diary.

3.4

The diaries were unstructured, although guidance was given at the start of each page as to what diarists might write about. Each day, diarists were asked to record how they felt, any health problems they had had and any action they had taken. As well as care from health professionals, diarists were also encouraged to comment on ideas about what had caused any health problems, any informal care, self care and alternative therapies they had used and how their everyday life had affected their health. This inclusive conceptualization of health and healthcare was also reinforced in conversations and interviews before, during and after the diary-keeping period.

Assessing the Potential for Qualitative Diaries in Health Research

4.1

To date the data collected from these eight diarists have been subjected to only a preliminary analysis. It is possible, however, to use these analyses to illustrate five key issues related to the use of diaries within sociological research on the experience of health and illness:

• the potential of the 'diary-interview' method to accommodate different response modes;
• the extent to which the method captured diarists' own priorities;
• the importance of the research process in illuminating the contexts within which helpseeking took place;
• the role of diaries as both a record of and reflection on the experience of illness; and
• the value of the 'diary-interview' method as a means of understanding what is 'taken for granted' in accounts of health and illness.

Differential Response Modes

4.2

Diarists approached diary-keeping in different ways. As discussed above, diaries have an 'everyday' meaning which extends beyond the research context. Thus research informants are likely come to the task of completing a research diary with their own ideas about what diary-keeping entails. The diaries differed in, for example, the intimacy of diarists' revelations, the balance between reflection and more straightforward reporting of events and the degree to which diaries focused on 'health issues' or tended towards exploration of the interconnections between health and everyday life. The open format allowed informants some leeway to write about what was important to them and to structure entries as they felt appropriate.

4.3

Some informants warmed to the task of diary-keeping more than others. Sheridan suggests that some people are predisposed to be diarists. These people 'have already forged for themselves an identity as that kind of writer, someone who keeps records, collect things, preserves the present for the future' (Sheridan, 1993: p. 35). Thus the notion of recording one's daily existence is more familiar to some people than others. There were some diarists in the health study who were used to reflecting on their lives in different ways. For example, one informant described how he liked to fill in self- assessment quizzes in newspapers and linked this to his interest in the diary study. Another, who produced a detailed, reflective diary, was involved in researching his family tree and regularly set aside an afternoon for correspondence. In contrast, one informant withdrew from the diary study after a week. Although she was an enthusiastic interviewee, she could not see the point in writing about her 'boring' life. In these cases the combination of diary and interview was useful in offering informants different media within which to express themselves.

Understanding Informants' Priorities

4.4

The 'diary-interview' method was also useful in understanding which aspects of health and health care were most important to informants. Most informants reported multiple health problems, including symptoms related to unstable angina, depression, anxiety, colds and pleurisy. These conditions were not all equally problematic. The open diary gave a feel for the meaning and the weight attached to different health problems and how they interacted together to shape helpseeking - priorities which would not have been less likely to emerge in a more structured diary.

4.5

The open health diaries proved particularly useful for capturing the individual treatment routines and self-care strategies associated with ongoing or chronic health problems. Over time, some diarists had developed expertise in their health problems, as well as knowledge about available treatment options, local health care services and the health care system in general. In some cases they assumed the main responsibility for managing their health problems on a day to day basis.

I have to watch what I take with them because they are strong pain killers that I'm on but I'm used to them now I've been on them a long while so I know what I can take and what I can't take. (Mrs B, interview)

4.6

In addition, some informants had intricate strategies for accessing the care they needed, which may well have eluded more structured methods. For example, Mr W, who was housebound, had carefully built up a network of friends, family and trusted health professionals to provide a large part of the care he needed to keep living independently. He wrote about the key people in his network in his diary, but the roles that individual members played and how Mr W experienced his relationships with them emerged from the conversations and interviews around the diary. The centre of his network was John, a friend who had supported Mr W in negotiations with health and social service professionals. Mr W's friend Pete, provided companionship - including staying with Mr W when he was concerned about his angina, taking him out for drives in the country and running errands. John's son regularly helped with his shopping, while Mr W's grandnephew looked after his garden, for which services he paid them. Mr W's sister did his ironing and she and her husband had organized his affairs whenever he suddenly had to be hospitalized. In addition, Mr W had arranged a cleaner, some temporary support from a social worker, home visits from his GP and home deliveries from his pharmacist, who was also a neighbour and acquaintance. Mr W was careful not to 'overburden' any one member of the network. As with other diarists with sustained needs for care, he maintained a sense that a finite amount of care was available and that goodwill was an exhaustible resource.

4.7

As well as revealing what action they did take in relation to their health, the open diary afforded informants the opportunity to record what they did not do and what they intended to do.

The only other thing that happens a lot which I haven't mentioned before is always getting hot a lot. I intend to ask my doctor when I next see her how long this is likely to last for ... I must make some notes to take with me when I see the doctor, because its easy to forget to ask when you are there. (Mrs S, diary)

Felt very well in myself but left leg became very painful at about 8.30 am - worst its ever been had to got to the medical centre for some painkillers the pain went less at about 13.00 hours. The pains seemed to be from the knee up to the hip. Didn't tell the wife about it. (Mr D, diary)

4.8

The follow-up interviews provided the opportunity to ask about what lay behind departures from 'normal behaviour' - such as, in the case above, talking to one's partner about feeling ill - as well as finding out whether intentions resulted in action or not. This is important in understanding why some symptoms result in action while others do not.

4.9

However, while the 'diary-interview' method allowed informants a certain amount of freedom to write about aspects of their health routine which were important to them, it would be misleading to suggest that the diaries used in this study were written within informants' own frame of reference. Diaries commissioned specifically for research are not private documents. From the outset, they are written with a particular reader and their agenda in mind, not just the potential readership that a 'memoir' might have. In their recent diary study of lay concepts of mental health, Pavis et al (1996) describe how diaries they received felt as though they were addressed to them. Running through the diaries kept for the study discussed here, there was a strong awareness of the researcher. This awareness was demonstrated in various ways. For example, on occasions the researcher was mentioned in some diaries, becoming both the destination for, and actor in, people's accounts.

Also Miss Elliott came round and we had a long chat. (Mrs T, diary)

4.10

Some of these comments indicated that people were concerned about how their account would come across.

Heather came this afternoon and everything seems alright. (Mr W, diary)

I'm sorry if it seems a bit jumble, I have tried to put things down as I felt them, hope you can read my writing. (Mrs S, note accompanying a diary returned by post)

4.11

On occasions, diarists fleshed out their accounts for my benefit:

I woke several times in the early hours (something which happens a lot). (Mr W, diary)

The only other thing which happens a lot which I haven't mentioned before is getting hot a lot. (Mrs S, diary)

4.12

...or went to pains to provide the information they believed was required. Thus one diarist made a point of getting back the results of a blood test, because:

I just wanted everything in there so I could write it in here for you. (Ms A, interview)

Understanding Contexts and Processes Surrounding Helpseeking

4.13

A great deal of the power of 'diary- interview' method lies in the research process which supports and surrounds it. Zimmerman and Wieder (1977) highlight the value of following diaries with interviews in order to check the internal consistency of informants' accounts, to fill in omissions and move beyond events recorded into more general experience and attitudes. As the following extract from the diary study indicates, the post-diary interview was useful in allowing both researcher and informant to fill in gaps. Mrs S was able to include something she had forgotten to mention earlier, while the researcher was able to get a greater understanding of the criteria she used to decide whether symptoms should be included in the diary or not:

the one thing I meant to put down that I didn't mention was that I hadn't had headaches for quite a while, the only time I had one was like having a drink related one (laughs) but that was the other day but it wasn't anything to do with normal health, I'd had a drink I just felt tired, but so in myself I've felt OK. (Interview)

4.14

However, follow-up contact with informants can involve more than triangulating and expanding written accounts. The process of returning to an informant and accessing different kinds of accounts provides the opportunity to develop a researcher's understanding of the meaning which informants' attribute to certain events. For example, the following extract from Mrs T's diary indicates how understanding of self-care strategies, ideas about aetiology and the social and biographical context was built up over time, through a range of different sources. The diary was dominated by the strain of caring for her frail father. The connections between Mrs T's health, her sense of well-being and caring for her father emerge over several days' diary entries. The biographical context of her relationship with her father is apparent from the interviews.

28 September, 1996
Told Dad I'd made him an appointment at the doctors, now he's decided I'm doing it on purpose, going out, so he has to go on his own. He won't have to go on his own as I will go with him.

29 September, 1996
Went down to see my Dad this afternoon and explained I wouldn't be able to go in the morning (Monday) I feel a break would do us both some good.

30 September, 1996
Didn't go to my Dad's today. Went to college this morning, had my lunch out, went shopping this afternoon and night school tonight. ... I arrived home at 10 o'clock without a headache.

1 October, 1996
Got up with a raging headache, I have to take my Dad to the doctor's. Went down at 2 pm as his appointment is at 2.40 pm, he had already gone. Met him at the doctors and he did nothing but grumble because it cost him £2.60. If I had gone with him he would have expected me to pay for it like he did last Saturday. My headache is easing off and I'm sure its because I don't need to go to my Dad's again tonight.

4.15

This 'non-visit' appears to be part of Mrs T's strategy for managing her headaches. It is clear that it was difficult and unusual - 30th September is the only day during the diary-keeping period when she did not see her father. However, its full significance only became apparent in the interview and conversations around the diary. This had been the first time Mrs T had not visited her father in a very long time. The physical and emotional pressures of caring for him were exacerbated by his lifelong dominance of her and her mother. She related, with some anger, how her father had chosen her wedding gown and when she had divorced and returned to live with her parents, had refused to let her socialize. Her diaries suggest that Mrs T still felt under pressure from him not to 'go out', an impression strengthened by her conversations with me. Throughout the fieldwork, she linked her headaches to the stress of coping with her family circumstances - although she had received (successful) treatment for a brain tumour which was also a potential cause of her headaches.

While I was in hospital [for an operation to remove her brain tumour] I didn't have any headaches at all. While I was at home here, I was having them night after night because I was pacing the floor every night. I couldn't stand the pain and yet in hospital I didn't have any and I couldn't understand this at all and she [hospital consultant] said 'Well, you've no stress in here, you've nothing. You just sit here and we tell you what to do', and I just laughed, and then when I came home again [after the operation] she said you shouldn't have any more now but they started again so I put it down to stress and leave it at that. (Interview)

4.16

Ordinarily, it was extremely difficult to cope with the demands of caring for her father. However, the interviews also revealed that what made the ordinarily difficult pressures intolerable was the loss of contact with her granddaughter.

Interviewer: And what do you think is causing the stress at the moment?

Mrs T: Its alright to say you haven't lost her [Mrs T's granddaughter] but she's going further and further way - she's 12 now....

Diaries as Record and Reflection

4.17

The previous section has indicated how the diary-keeping process offered increased opportunities to understand the contexts within which illness is experienced, needs are expressed and accounts given. This was mirrored by a development in some informants' understanding about what the purpose of the study was and their role in the research process. There were noticeable changes of tone during the diary-keeping period. At the start of the study, most informants focused very much on their performance as diarists. One couple who were keeping diaries had 'conferred about what to include' and 'how to write the diary ... referred to what they should have put down in the diaries or what I would see more of in the next diary' (fieldnotes). On the first visit to collect the diaries, most informants needed to be reassured that they were completing the diary 'properly'. Over the diary- keeping period, most diarists seemed to grow more confident and less self-conscious about sharing their diaries, as they found and developed their own voices and became more accustomed to the researcher's visits. Some became more interested in how their accounts were used - Mrs A asked if the study might contribute to pressure to close hospitals, while Mrs T became concerned that her account, which included descriptions of her difficult relationship with her father, could be used by social services to 'take him into a home' (Fieldnotes).

4.18

The act of completing the diaries and the opportunity to reflect meant that the informants had prepared for the interview in much the same way as the researcher had. The later research interviews were grounded in texts mainly authored by the informants and reiterated informants' own terms for describing their experience rather than being based on researchers' texts, such as interview schedules or questionnaires or researchers' terms of reference. During the interview some informants referred to the diaries, using them as an aide-memoire or to reinforce points they were making or to guide me through their stories. They were collaborators in the construction of the account and had a stake in the research process.

Unpacking 'Taken for Grantedness'

4.19

In an important sense, diary keeping and the wider research of which it forms part, served to bring to the foreground issues about illness which are more commonly at the back of people's minds. This is not to imply that ill-health was necessarily trivial or easily absorbed into everyday life. Indeed, as Mr W's account highlights (P. 8, above), illness and the quest for appropriate care did not seem to be parts of life which people had accommodated without thinking. Most diarists monitored their health in quite precise ways - in order, for example, to judge whether their pain or discomfort warranted treatment with painkillers or whether they could manage without them. Rather, what may be 'taken for granted' is that their immediate experience of illness must be suppressed when there are more pressing concerns:

Started off not too bad as it is our Pearl Wedding tried hard not to let my pain spoil the day later pain in back leg and neck bad had to take all my painkillers and muscle relaxants. (Mrs B, diary)

4.20

...and borne with a degree of stoicism, in relative silence. In this extract Mrs S's feeling that talking about her health worries was an imposition comes across.

I worry that its going to get worse instead of better even though I am trying to keep the exercise going. I have not talked it over with anyone as I sometimes feel that I'm moaning too much. I miss my friend D as perhaps she is the one I would probably have talked things over with. (Mrs S, diary)

4.21

Thus giving accounts of illness is a fraught activity. Talking about illness to researchers who may well be perceived as well - by dint of having a job, being mobile or needing to ask to know what it is like to live with ongoing pain or disability - may be uncomfortable or threatening to someone who is acknowledged to be ill - indeed who has been selected for interview on account of their status as an 'ill' person (Radley and Billig, 1996). Certainly within the study reported here, there was a great deal of sensitivity as to how accounts might be received. During the fieldwork, the majority of diarists expressed concern that they would seem like 'hypochondriacs'. The experience of having accounts of illness misunderstood, marginalized or disbelieved by people from whom they needed to access care - friends, health professionals, employers and gatekeepers to welfare benefits - was common. The strain of justifying one's needs ran through the research diaries and interviews. There was also a sense of a vulnerability borne of the awareness that the needs which one often struggled to express might not be judged to be worthy of, or amenable to, outside help or indeed might jar with their own beliefs about what they were entitled to. In this context people with sustained needs for care could be conceived of as a muted group, in the sense that Ardener developed the term to describe the disadvantageous position of women within a patriarchal society (Ardener, 1975; 1978). Muted groups describe their experiences within the terms of reference of the dominant culture. Thus people with long-term illnesses may be marginalized within the dominant ('healthy') culture and who may give illness accounts using socially 'appropriate' terms of reference which do not easily fit with their experience.

4.22

Mutedness is not synonymous with inarticulacy. Muted groups may talk eloquently in the dominant discourse and even oppose the status quo in ways which are socially endorsed. For example, there was general consensus that young children were entitled to privileged access to formal health care services. This construction of children as a particularly vulnerable group chimes with professional attitudes. (Lattimer et al, 1995) However, muted groups struggle to articulate aspects of their experience of demands for help which have not been accommodated into a dominant discourse.

4.23

In the diary study, this struggle to express need is apparent in the words people used - in particular how people tended to diffuse, withdraw or abandon half-formed complaints or concerns about their care or their health. Thus Mr W used the phrase 'I'm very lucky really' throughout his conversations with me, dwelling on the word 'really', as though to qualify the contentment implied in the phrase which had gone before. The following comment from his diary is indicative of the way informants tended to censor murmurs of discontent.

Have felt fairly well all day. Never as well as I would like, but you have to accept this and count your blessings. (Mr W, diary)

4.24

The change from the first to the second person pronoun distances Mr W from the statement. It gives the impression that this is an external message - he knows what he has to do but doesn't quite accept it. Informants' voices at times competed in the diaries with 'external voices' - either embodied by friends or health professionals or in the form of general ideas about what they 'should' do. These two kinds of external voices merged in Mrs T's accounts of her illness. She punctuated her conversation with the phrase 'the only one who can help me is myself. It emerged that she had been told this by a GP who had treated her some time before for depression and had adopted the message. This creed of self-reliance, which was shored up by mistrust of, and bafflement at, social and health care bureaucracies and a history of misunderstanding of the same, seeped into other areas of her life - for example, as a means of explaining her inability to access much needed help in caring for her elderly father. It conflicted with her ongoing and often frustrated attempts to seek help and with the indications of need which threaded through her account, of what she felt it would take for 'everything to be fine'.

If I hadn't got them two here [her elder son and her father], everything would be fine, with my granddaughter here and K [her younger son] floating around. (Fieldnotes)

Concluding Remarks: The Role of the Diary-interview Method in Accessing Muted Accounts

5.1

The qualities in diaries which have been feted hitherto in the literature on health service research are the potential to record events, over time, as close as possible to when they occur. However, aspects of the diary form more prominent in literature on auto/biography - such as intimacy and proximity to informants own frame of reference can be developed in researcher-driven diaries through the 'diary-interview' method.

5.2

These qualities are particularly valuable in accessing accounts which are 'hidden' or muted because they do not fit into categories structured in terms of the researcher's frame of reference or because they are difficult or shameful to admit to. This paper has highlighted how giving accounts of illness can be such a fraught and anxious activity - a point which has been noted by other commentators (Radley and Billig, 1996; Pavis et al, 1996 and Williams, 1983). Thus in a 'diary-interview ' study about lay concepts of mental health, one informant revealed that she had an ongoing illness towards the end of the study, but not in the initial interview. She attributed this exclusion to reluctance to complain about physical symptoms instilled in her from childhood (she was in her 50s) and reinforced during an experience of ME, when she ended up feeling like a 'hypochondriac' (Pavis et al, 1996). This datum points to how talking about being ill can be problematic as well as some of the external pressures which can lead to the suppression of illness episodes. It also highlights the value of the 'diary-interview' method in accessing muted accounts. This is not to suggest that qualitative diaries or indeed any other sociological research method are capable of capturing a definitive account of illness. However, the 'diary-interview' process offers informants insights into how individuals construct accounts of illness and expressions of need over several research encounters and within different media, as well as the opportunity to follow informants as they experience illness episodes or life events. Moreover, diarists have the opportunity to reflect on what they have said and to participate actively in research process and analysis of their own behaviour.

5.3

'Mutedness' is not synonymous with inarticulacy. Muted groups may talk eloquently in the dominant discourse and even oppose the status quo in ways which are socially endorsed. For example, there was general consensus that young children were entitled to privileged access to formal health care services. This construction of children as a particularly vulnerable group chimes with professional attitudes (Lattimer et al, 1995). However, muted groups struggle to articulate aspects of their experience of demands for help which have not been accommodated into a dominant discourse. Within this context, the 'diary-interview' method can heighten awareness of what informants are doing when they give accounts.

Acknowledgements

I am grateful to Helen Busby; Jennie Popay and Gareth Williams at the NPCRDC at Salford University for their comments on drafts of this paper and support throughout the study reported here. Thanks are also due to Sara Mallinson at the Public Health Research and Resource Centre and Anne Rogers at the NPCRDC at Manchester University for their insightful comments on an earlier version of this paper and to Dorothy Sheridan at the Mass-Observation Archive and Hugh Masters at Edinburgh University for their help with the development of the study.

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