Helping themselves to get pregnant: a qualitative longitudinalstudy on the information-seeking behaviourof infertile couples

Maureen Porter1 and Siladitya Bhattacharya

Department of Obstetrics and Gynaecology, Aberdeen Maternity Hospital, University of Aberdeen, Forestherhill,

Aberdeen AB25 2ZD, UK

1Correspondence address. E-mail: m.a.porter@abdn.ac.uk

BACKGROUND: Couples seeking infertility treatment are generally hungry for information about availabletherapeutic options and how to help themselves achieve pregnancy. This study examined couples’ perceptions ofthe information available from various sources in the context of achieved pregnancy or continuing treatment.METHODS: A 3 year prospective interview study started in April 2004, following couples undergoing infertility treat-ment at a tertiary fertility clinic at Aberdeen Maternity Hospital. Fifty-four couples were invited to participate. Up tothree semi-structured interviews took place, and were analysed thematically using a variation of grounded theory.RESULTS: Twenty-seven couples agreed to participate and of the 25 couples followed up, 11 were diagnosed withunexplained infertility. The age range of the women was 22–41 years. All hoped to be given information onhelping themselves to achieve pregnancy, spontaneous or assisted, and 19 of the 25 couples became pregnant. Mostcouples were dissatisfied with the written and verbal information routinely provided by the fertility clinic becauseit suggested lifestyle changes they had already attempted to adopt. They sought additional information from the inter-net, books and magazines. Those who became pregnant were generally empowered by the experience and thought thatit had helped them to conceive. Women who were still undergoing treatment however, sometimes became distressed,blaming themselves for failing to follow the lifestyle advice provided. CONCLUSIONS: Couples, especially those diag-nosed with unexplained infertility, seek information to help themselves conceive, but only those who succeed find it anempowering experience.

Keywords: infertility; information seeking; self-help; alternative remedies; qualitative study

Introduction

Most infertility clinics in the UK supply patients with written

information of their own, and also that produced by charitable

and statutory organizations involved in infertility care such as

Infertility Network UK and the Human Fertilisation and

Embryology Authority. Clinicians and nursing staff also

advise couples individually about how best to help themselves

achieve a pregnancy. Nevertheless, studies suggest that most

couples coming to infertility clinics seek further information.

They actively trawl the media for relevant items, read books

and magazines, and search the internet for tips and support

(Cousineau et al., 2004; Hinks et al., 2004). In one of the

few studies to examine infertile couples’ information needs

and the use which they make of the information obtained in

this way during subsequent decision-making, Wingert et al.

(2005) suggest that searching for information is the second

step couples take after recognizing they have a problem. In a

study of Canadian infertility patients, Weissman et al. (2000)

found that 56% of current internet users had obtained

information about fertility issues from the internet, regardless

of their socio-economic or medical status. Of these, 30%

found it helpful in their decision making. Another Canadian

study by Huang et al. (2003) reported greater internet use

among women, higher socio-economic groups and higher

earners. Himmel et al. (2005) found that 66% respondents vis-

iting an ‘internet expert forum on involuntary childlessness’

expected general information about involuntary childlessness,

conception or an evaluation of drugs and 41% to discuss

their actual treatment. Interestingly, the authors described

patients’ requests for basic information as ‘trivial’ and an inap-

propriate use of an expert forum.

Though a number of studies have examined couples’ infor-

mation seeking in the context of coping behaviour, few have

used qualitative methods to find out the meaning for couples

themselves of seeking information and their perceptions of

any knowledge obtained during the course of infertility inves-

tigations. Such meanings and understandings do not have an

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objective reality which can be measured by scientific instru-

ments, but are constructed during the course of social inter-

action, particularly when people narrate their story (Berger

and Luckman, 1967). Hence, we used in-depth interviews to

find out how couples seeking fertility treatment felt about the

nature and quantity of information available to them from the

clinic and elsewhere. We also wished to investigate couples’

changing perceptions of such information over a period of

time and in the context of continuing treatment or achieved

pregnancy.

Materials and Methods

This longitudinal study started in April 2004 with the aim of following

a small number of couples from original contact with the fertility

clinic until their treatment ended—through pregnancy or discontinu-

ation—or 3 years had elapsed. Letters of invitation were sent to 54

couples attending the fertility clinic at Aberdeen Maternity Hospital

for the first time. Twenty-seven couples agreed to be interviewed

and 25 were selected consecutively for inclusion. This was thought

sufficient to develop explanations of behaviour through the detailed

scrutiny and deviant case analysis typical of qualitative methods

(Mason, 2002). The ages of those interviewed did not differ signifi-

cantly from those refusing [mean (SD)] 33.3 (5.11) years versus

33.4 (5.24) years, respectively; 48% interviewed couples lived in

Aberdeen city compared with 50% of those not interviewed. Ethical

constraints prevented us from obtaining more information on

couples who refused to participate.

With few exceptions, couples were interviewed together in their

own homes at their convenience. We decided to interview them

together because they are treated as a couple at the clinic and expected

to make decisions together on investigations and treatments available.

Arksey (1996) and Seymour et al. (1995) have written of the advan-

tages of joint interviews when a collaborative definition of a situation

is required. Obviously different, equally valid results would have been

produced by interviewing couples separately. Owing to circum-

stances, however, three of the second and three of the third interviews

were conducted with the woman only and one final interview was con-

ducted by telephone. In total, 58 interviews were completed.

The first interview occurred soon after the first hospital clinic

appointment, before a diagnosis was made. The second interview

was planned after a diagnosis had been made and a treatment plan

agreed. As seven couples participated in a clinical trial lasting 6–12

months where they were randomized to alternative treatments,

decision making was delayed. Thus the second interview varied

from 5–17 (average 9) months after the first. The final interview

occurred 1–2 years (average 18 months) later and was designed to

follow couples’ experience of one or two treatments without success

or the diagnosis of pregnancy if appropriate. An investigator’s (MP)

ill-health delayed the third interview in a number of cases.

However, couples were regularly contacted by telephone between

visits. The interviews were semi-structured to allow topics of interest

to researcher or respondents to be fully explored if appropriate (See

aide memoire in Appendix). Tape-recorded and transcribed verbatim,

the interviews were analysed thematically using the variation of

grounded theory recently described by Charmaz (2006). After

reading and rereading the transcripts, data were coded by large topic

area and then into smaller sub-topics. During this process, patterns

and themes emerged which were discussed with colleagues to increase

the reliability of the coding and the validity of the interpretation.

The presence of multiple interviews with respondents enabled us to

treat their accounts as biographical narratives and to examine their

reinterpretation of events in the light of subsequent experiences,

especially achieved pregnancy or continued treatment (Franklin, 1997).

Just for their own interest, respondents were given transcripts of the

previous interview at each subsequent one. Most people read them and

commented on the content, but no-one wanted to change anything. In a

form of respondent validation (Bloor, 1997), some of the major themes

concerning respondents’ perceptions, decision-making and ways of

coping, which were identified during analysis of the first two inter-

views, were presented to them during the final interview. These took

the form of 11 summary statements which respondents were invited

to discuss. Three of these, concerning couples’ expectations and

response to their referral to the infertility clinic, suggested that they

wished to help themselves to achieve pregnancy if at all possible.

The next section describes how that meta-theme was inductively

derived from various sections of different interviews and includes

couples’ responses to relevant summary statements.

Results

Respondents’ background

Among recruited couples, women’s ages ranged from 22 to 41.

Two of the women and two of the men had children in previous

relationships and one in their current relationship. Causes of

infertility were ultimately diagnosed in 24 of the 25 couples:

11 unexplained, 4 tubal factor, 3 ovulatory, including one

with polycystic ovary syndrome (PCOS), 3 combined (ovula-

tory plus male factor), 2 male factor only and 1 with

endometriosis.

Figure 1 summarizes clinical outcomes in the couples during

the course of the study.

Of the initial 25 couples interviewed, two became pregnant

shortly thereafter without any treatment. Three were lost to

follow-up at this stage, one couple because they moved away

and two refused further interviews. Of these, one was discour-

aged from further treatment due to female age, and the other

was told that her tubes were blocked and she would need

IVF. Of the 20 couples interviewed a second time, one who

had been previously sterilized decided not to pursue any

form of fertility treatment, and five became pregnant, two spon-

taneously and three as a result of treatment (2 IVF, 1 clomi-

fene). One woman who was pregnant as a result of IVF

dropped out of the study, leaving 13 couples for the third and

final interview. Only three couples remained unsuccessful,

though one had experienced a spontaneous abortion following

intrauterine insemination (IUI). Of the 10 who were pregnant

or had given birth by the third interview, three were spon-

taneous pregnancies, six were the result of treatment (1 ICSI,

2 clomifene, 3 IVF) and one was unclear (clinic facilitated

and medicated weight loss).

Seeking information

Only half of the 25 couples interviewed had been sent a leaflet

explaining what to expect at their first clinic visit. Although it

clearly states that both partners will be examined, few seemed

to have prepared themselves for this. Whether or not they

received the leaflet, most expected the first visit to be little

more than a preliminary discussion. Stating that he thought

his partner would have to come back later for a scan, one

man expressed surprise, “. . . there was a lot more done than

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I thought there would be. I thought the initial visit would just be

a general history taking and asking how long we’d been trying

and so on—just an introduction really.” (Male037 first inter-

view). All but one of those asked, agreed with the summary

statement that the first visit was satisfactory. Couples were gen-

erally pleased to be scanned or examined, but after what was

frequently a long wait for their hospital appointment, many

expected to be given more practical information or helpful

hints on how best to help themselves: “. . . your first time you

just expect to have a long, long chat and to come away from

there with you know, weird and wonderful instructions like

stand on your head for half an hour and all this kind of

stuff.” (Female049 first interview). Not only were they disap-

pointed with the absence of helpful hints, but the standard

factual information they received was perceived as unhelpful.

Advice on adopting a healthy lifestyle—diet, exercise,

weight control, etc.—was irrelevant because they were

already aware of such factors and, in most cases, had taken

steps to improve their lifestyle. “. . . it just depends on your per-

sonal circumstances. I mean if you are a smoker, or a drinker,

they are going to advise you to stop those sorts of things just to

help out that. But because neither or us do that you know, they

didn’t really have to tell us about that. . .” (Female037 third

interview). Couples seemed to expect that the information pro-

vided by clinic staff would be superior to that which they could

obtain themselves and were often disappointed when it was not.

“He (the doctor) never gave us nothing to go away with. He

never said, “Do this and do that.” I would have got more infor-

mation going home and going onto the internet or reading

books.” (Female103 interview1). That they were ‘disap-

pointed’ not to receive more practical advice was one of the

findings revealed to couples during the final interview. Ten

of the 13 couples agreed that it was true, the others being

pleased with the information obtained (2) or saying it was irre-

levant in the case of a couple having ICSI. Two couples

reported learning about the right time of the month to try for

pregnancy or the ineffectiveness of commercially available

ovulation tests and predictors.

Every couple interviewed read magazines and books and

most surfed the internet for additional hints and information,

several mentioning the same popular writer on infertility as

being helpful. Those who had been diagnosed with specific

conditions such as PCOS or endometriosis obtained infor-

mation on possible treatments and support groups. Couples

also evaluated alternative remedies on offer such as reflexology

and acupuncture, with varying degrees of scepticism. A woman

who had tried Chinese acupuncture and Chinese herbs said that

she started to feel exploited. “I was going for. . .acupuncture

every week, and I started to feel pressured into buying more

and more herbs.” (Female001 second interview). Several

couples mentioned the opportunity which the internet provided

for unscrupulous merchants to exploit vulnerable couples such

as themselves. However, a more positive view was taken of the

internet’s ability to provide experience-based information and

support from those going through the same process elsewhere.

Indicating that she had not been guided by the clinic, one

woman said of the internet, “I found it most helpful, but that

was just going and doing it myself. . . There’s quite a lot of

good support groups on the internet you know. . . So you can

talk to people in the same situation as you. . . if there are

things that you don’t understand, you know people give advice

or, you know what they’ve tried.” (Female020 third interview).

No support group was available in Aberdeen at the time of study.

All couples were offered counselling, but only one man took up

the offer after his partner miscarried. Others indicated that they

might have used the counselling facility ‘had the need arisen’.

Many said that they had spent ‘hours’ on the internet researching

every aspect of infertility but two couples said that they did not

want to know too much or were ‘freaked’ by the plethora of

information available.

Conceiving naturally

Couples largely hoped to be able to conceive themselves

without having to go too far down the investigation/treatment

route. Much of their information seeking and subsequent

activity was directed towards this. However, couples were

also influenced by success stories in common currency about

pregnancies resulting from referral or investigation. Speaking

of the investigations, one man said, “I think the dye test is prob-

ably better for us because we’re still young and you never

Figure 1: Clinical outcome for the 25 couples undergoing infertility treatment at a tertiary fertility clinic at Aberdeen Maternity Hospital whoagreed to be interviewed

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know, over the next few months. . . . . We still think we’ll do it

naturally. . .You hear stories of people going and getting the

tests done and then the following week falling pregnant . . .”(Male054 first interview). Couples believed that passing respon-

sibility onto the clinic might enable them to relax enough to con-

ceive. Relaxation was seen as key to natural conception, and a

number of women had changed to less stressful jobs in the

hope of assisting conception. Couples also heard this from

other people, “. . .you know everybody says, “Oh when you

relax it just sort of happens.” (Female033 second interview)

including the medical profession: “My doctor did say a lot of

folk fall pregnant while they are waiting for an appointment

because a lot of stress comes off them.” (Female 103 third inter-

view). Not all couples had hope of conceiving naturally but even

those without, such as women with blocked tubes or men with

poor sperm, sought information on how to enhance their

chances of assisted conception. Hence, men gave up cycling

and wore loose underwear and women gave up alcohol and

coffee. As time passed, some of those who had initially hoped

that referral alone might achieve pregnancy, found that the

diagnosis, their age and the duration of infertility affected their

perceptions of the likelihood of ‘doing it themselves’.

One reason that couples hoped to ‘do it themselves’ was

the evidence that conceiving naturally provided of fertility.

“Well, we got there by ourselves. . . It makes me pleased

insofar as, if anything happens to this baby, I know that. . .I can get pregnant . . . .” (Female033 second interview).

Although a natural conception meant that couples could con-

ceive again, they did not take this for granted and often

expressed concern that they might experience difficulties in

future. Those who had conceived as a result of clomifene

treatment, similarly wondered if they would need it again to

conceive another child. Another reason couples preferred to

conceive without assistance was that infertility treatment

was not seen as ‘natural’ because of its invasive nature but,

as is illustrated by the following quotation, some types of

treatment are seen as more unnatural than others. “. . .eight

embryos came from the ten eggs so and that was just, it

was natural. Well as natural as IVF can be. But it was just

eggs, sperm and see what can be done. There was no, I

think ICSI is when they force it.” (Female108 third inter-

view). A woman who had successfully undergone ICSI

expressed concern about the long-term effects of such a pro-

cedure on the child, suggesting why its invasiveness might be

seen as problematic.

Nine of the 10 couples asked agreed with the summary state-

ment that they had hoped that ‘just being referred or starting

investigations’ would enable them to conceive, even though

they knew it was not likely. Describing the problem as being

taken out of her hands, one woman described thinking, “They’ll

get me pregnant. But then you realise that this is not always

going to be possible.” (Female049 second interview). One

woman was unsure. Those who could not conceive without assist-

ance were not asked to indicate its relevance to them.

Helping themselves

Those who became pregnant, whether spontaneously or as a

result of treatment, often viewed their own efforts at

information gathering and lifestyle change as contributing to

their success. A woman who became pregnant as a result of

IVF speculated about the effect of the alternative treatments

she had tried: “But when I went for reflexology she said I

was so. . .my body was relaxed, which is what you are trying

to do. The acupuncture must have worked. . . I had done all

my sessions and stuff and then went to IVF. So yeah maybe it

helped, you never know.” (Female108 third interview). A

woman who had tried for 6 years without success believed

that the hysterosalpingogram or the copious amounts of pineap-

ple juice she had swallowed must have helped. “I think it was

that dye test did something for me and that, because it was the

month straight after fthat I conceivedg. Either that, or it was all

the pineapples I ate that month. It was one or the other

(laughs).” (Female103 third interview). Others felt that think-

ing positively or not entertaining the possibility of failure had

helped, whether conceiving naturally or as a result of treatment.

However, a man who had cut out strenuous exercise in an

unsuccessful attempt to improve his sperm quality, said that

his wife’s dietary changes must have been more influential.

This suggests that couples’ stories may reflect a process of

selecting among their own actions those which show them to

be active and successful participants, perhaps enabling them

to regain some control of the situation.

Couples who believed that they had helped themselves to

achieve pregnancy were generally empowered by the experi-

ence. They regretted that clinic staff did not do more to encou-

rage couples to help themselves. “. . .I know doctors don’t do a

lot of alternative things, but it would be really nice, you know

because like I say, it makes you feel empowered because you’re

doing fsomethingg. You are being proactive about it, instead of

feeling like this is happening to us, you know.” (Female118

third interview). Such empowerment is particularly important

because infertility patients are largely the passive recipients

of investigations and treatment, and spend a lot of time

simply waiting—for appointments, for tests, for their next

period and for results. These periods of waiting have contribu-

ted to what has been described as the emotional ‘rollercoaster’

of infertility treatment (Hertz, 1982). Consequently, they

welcome anything that improves their mental state. “. . .there’s a lot of things online that are more things to help, . . .basically to help how you think about it. . .. I don’t know if

any of these things will actually work. But I think maybe they

have realised that if people think that X, Y and Z will help, it

helps them to be more positive about it.” (Female 006 third

interview). In retrospect, those who were successful were

able to present ‘positive thinking’ as a successful strategy for

helping themselves although at the time it was “. . .just the

possibility of doing everything you can.” (Female026 third

interview).

The three couples who had not conceived by the time of the

third interview did not feel they had done all they could. Typi-

cally, they blamed their poor lifestyle or lack of adherence to

guidance, particularly when it came to losing weight. “. . . I

had problems with. . . thinking that I was sabotaging my own

chances. . . if I really wanted to do it I would have lost

weight. . . I just felt it was some sort of failing in me as a

person, and perhaps I didn’t really want to have a baby at

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all. And I started thinking I was going bonkers. . ..”(Female039 third interview). Another who had not conceived

also felt that other people would not understand the difficulties

and would blame her for failing to lose weight. “. . . the weight

is a huge issue for me and I know overweight people get preg-

nant but . . . it’s just so difficult. . . people probably say, “Oh if

you want something so badly, why can’t you lose the weight?”

And . . . it’s just a vicious circle . . . because your period comes,

you’re disappointed. . . And I’m a big comfort eater.”

(Female020 third interview). The third woman in this group

had also mentioned during early interviews that she felt she

should lose weight, but having conceived during IUI, no

longer blamed herself for failing to do so. Men were also

expected to lose weight or adopt a healthier lifestyle and two

of the three in this group had done so. The one who had not,

blamed himself for failing to eat a healthy diet but did not

link it to the failure to conceive, possibly because he had

been told that his ‘sperm were fine’.

Discussion

The study suggests that the information routinely supplied to

couples during the course of their hospital visits—whether

verbal or written—is not generally perceived as sufficient,

encouraging them to look elsewhere for alternative sources

including the internet. A general trend towards seeking health

information online has been documented (Sillence et al.,

2007) and infertility patients reported to be active seekers of

descriptive information and second opinions (Weissman

et al., 2000; Huang et al., 2003; Tuil et al., 2007). This study

suggests that some of patients’ information seeking is directed

towards helping themselves to achieve a pregnancy, preferably

naturally. Like Hjelmstedt et al. (2004), we found that couples

see a natural conception as preferable for a number of reasons,

including the ‘unnaturalness’ of assisted conception. Their

search for helpful information also reveals to them the potential

benefits of support groups and alternative therapies such as

reflexology and acupuncture. Moreover, couples appeared to

believe that this is an effective strategy. Those who became

pregnant often felt that their actions might have helped, relax-

ing their minds and bodies sufficient to conceive. Those who

were unable to help themselves, e.g. by losing weight, felt

that they might have ‘sabotaged’ their chances of becoming

pregnant. In the context of a longitudinal study, unsuccessful

couples felt obliged to account for not having done what they

could to maximize their chances of success. Their narratives

may help them to accept the situation as Tennen et al. (1991)

have suggested that causal explanations of infertility may

enhance adaptation.

Couples did not suggest that their actions were a means of

coping with a threatening or uncertain situation, but women’s

search for information and support, and planful problem

solving can be seen as such (Peterson et al., 2006). Knowledge

of the outcome enabled them to reappraise the actions they had

taken to help themselves and to present them as successful or

not, or to choose the most successful from their repertoires.

The effect of the narrative is to show respondents’ interpretive

control (Tennen et al., 1991) because even those who did not

become pregnant could have worked harder to achieve that

goal. Though Letherby (2003) has argued that infertility

patients’ ‘accumulation of information does not add up to

knowledge’ (p.186) and may even contribute to feelings of

lacking control, this did not appear to be the case for these

respondents. However, as Wingert et al. (2005) have shown,

some medical information patients obtain from sources such

as the internet is inaccurate, raising the question of whether

clinics should be doing more to debunk the myths about what

can and cannot help couples conceive. A recent study by

Robinson and Ellis (2007) described mistiming of intercourse

as ‘a probable cause of failure to conceive’ in many couples,

perhaps illustrating the need for basic factual information.

Like Himmel et al. (2005), we identified a few couples who

found the content of the internet alarming, but most used it

selectively to gain information and seek support.

The study suggests that their efforts to help themselves often

made couples feel positive and empowered. Even those with

tubal damage or sperm problems, who had no hope of conceiv-

ing without assistance, believed that they could improve their

chances of assisted conception by actions such as following

dietary advice. This belief is important as loss of control is

reported to be a common experience of infertility patients

(Cousineau and Domar, 2007), and Segev and van den Akker

(2006) have suggested that it may continue into their experi-

ence of parenthood, resulting in greater use of support networks

or health and social care systems. Although Tuil et al. (2007)

recently found that patients were not measurably empowered

by having access to internet sites providing personal and

general information and giving access to fellow patients and

physicians, their five-point scale may not have been sensitive

enough to detect perceived ability to control or influence a

process which had previously been outside their control.

However, the downside of regaining some control was that

those who failed, e.g. at following a healthy lifestyle or

losing weight, felt psychologically diminished. Losing weight

is a difficult task for many women and likely to be particularly

distressing when combined with the traumatic experience of

failing to conceive.

The longitudinal nature of this study allowed couples’ chan-

ging perceptions of their experiences to be examined over time.

However, this was a small, selected sample from an individual

fertility centre, with a preponderance of a particular type of

infertility. The initial response rate was not as high as might

be hoped owing to the commitment demanded of a longitudinal

study such as this, but once included most respondents stayed

until the end. Following couples naturalistically from before

they were diagnosed meant there could be no control over

the types and duration of infertility included. Hence, more

couples than had been expected became pregnant and naturally

left the study. Time constraints prevented further couples being

added at a later date. More couples than is usual were diag-

nosed with unexplained infertility. As this group suffers from

a lack of clarity regarding the cause of infertility, they are

perhaps particularly keen to explore alternative options and

to enhance their chances of conceiving. The results are not

generalizable to a wider population, although it was evident

that those who had no hope of conceiving by themselves

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nevertheless found ways, such as relaxation and positive think-

ing, to be proactive. Some may argue that one party tends to

dominate a joint interview (Arksey, 1996), but this was an

area of life where women seemed to take control. Several

couples joked that the men were now following the healthy

regime prescribed by their partner on the basis of her reading

and research. Others have suggested that couples interviewed

together may collude to produce a ‘public’ version of their

story (Cornwell, 1984), but this was exactly what was required

in this case and is also that typically presented at the fertility

clinic (Leiblum et al., 1987; Franklin, 1990).

Conclusion

The study has uncovered an important area that needs to be

addressed at the clinical level as well as by means of further

research involving representative samples. Couples, especially

those with no obvious barrier to conception, want to help them-

selves to conceive, preferably naturally. Finding new sources

of information and support can be empowering. Clinics must

address patients’ needs for practical information and on-line

support, protecting them from the more exploitative elements

to which they are vulnerable. They must also accommodate

the needs of those advised to make changes to their lifestyle

but unable to do so, perhaps offering more active dietary

advice or encouraging them to accept available counselling.

Women especially may come to feel doubly a failure if

neither weight loss nor conception is attainable and other

ways to help themselves achieve a pregnancy are not on

offer. Similarly, those who change lifestyle and still fail to con-

ceive may need professional help to adjust.

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Submitted on July 16, 2007; resubmitted on November 13, 2007; accepted onNovember 20, 2007

Appendix

Interview 1 Schedule: Aide Memoire

Thoughts on possible problemsTime trying for pregnancy

Actions, experiences, feelings aboutImpact of infertility on daily life

Psychological effectsSharing of experiences/feelings

Description of first clinic visitActions, feelings about, criticisms

Treatments/investigations so farIn general practiceIn hospital contextDiagnosis, if any

Feelings about those investigations/treatmentsSuccess and failureSide effects and concernsOptions available

Decisions made about treatmentsRole of medical/nursing staffRole of each partnerOther factors

Satisfaction with those decisionsInformation, communication, decision process and resultAny differencesReflection afterwards/regrets

Feelings about current treatment, if anyAny differences

Hopes and fears for immediate versus longer term future

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