Sources of information

Patients and caregivers reported a wide range of sources of information about the disease and its management. Healthcare providers (hospital, antiretroviral therapy clinic, family planning clinic, and palliative care team) were a key source of information, reported by 30 patients and 12 carers. Non-governmental organisations such as support groups also played an important role for some patients, and the media was also mentioned as a source of information, particularly by carers. Both patients and carers also talked about receiving information and support from friends, neighbours, and family members. At site E, patients reported receiving information and support from peers with the same condition, as well as from their church minister.

Such resourcefulness in accessing information was often necessitated by a lack of sufficient information from their healthcare services. For example, an AIDS patient stated, “No, they [general healthcare staff] never explained what HIV was all about. The little information I had is what I gathered from my community and the media” (B037). Similarly, a cancer patient reported, “Sometimes you get a decent guy [hospital clinician], but then he’s so stressed out that he hasn’t got time to talk to you. Our knowledge of cancer was zero and we got most of our information through our daughter helping us out and through the internet” (E017). The patient’s wife, his primary caregiver, reiterated in her interview, “There was very little, we had to learn so much ourselves, we’ve had to read up on it. My daughter got printouts off the internet, the computer, and also from books” (E017C).

Participants clearly recognised that healthcare staff needed to provide more information. This is illustrated by a cancer patient who said, “Yes, I definitely think they [general healthcare staff] should give out more, especially to someone who’s just been diagnosed, for them to know exactly what they’re going through, to be able to speak to the doctors and . . . ask what’s wrong and what stage it was at” (E007). However, one patient stated that she wanted to know as little as possible:

Interviewer: “Is there anything else you would like more information about?”

Respondent: “Uh, uh! The less I know the better!” (E012, cancer patient).

Where palliative care services had actively provided information and support, respondents expressed gratitude. For example, the mother of an AIDS patient said, “The information that you gave us, and the help you gave us, made my son get well. Oh, I love you, my children. If I see you coming up there on the road I just feel so happy” (E016C).

Information needs

Patients and caregivers were asked if they would like additional information on any subjects. Nineteen patients and two carers reported that they did not need any additional information; however, 12 of these patients (10 from site D and two from site B) were not probed further for any unanswered questions (see “Barriers to effective information provision” for the significance of this). Box 2 summarises patients’ needs for information. At site A, seven patients also wanted to know whether their disease could be cured, suggesting lack of insight.

Across the sites, the topic on which caregivers most often reported needing more information was the patient’s disease and its progression. For example, the caregiver of a patient with cancer and AIDS stated, “They say about the CD4 count that when they decrease her life is in trouble. So I need to know her position now. Because they said the medication she is taking is for tuberculosis, yet for me I thought she started straight forward taking the antiretrovirals” (A030C). Other information needs of caregivers concerned symptoms and their management and financial and social support.

Nine patients and three caregivers reported not knowing which questions to ask staff or said that they were unable to judge if they had been given enough information. A patient with motor neurone disease exemplifies this: “They told me about my illness, though I don’t know whether it was enough, as I am not familiar with the disease” (B014). This highlights patients’ and caregivers’ reliance on healthcare staff to start and guide conversations and to share information, although staff members do not always fulfil this expectation (see “Communication with general healthcare staff”).

Impact of unmet information needs

Although participants were not asked specifically how their need for more information affected their lives, several interviews showed that being uninformed contributed to patients’ and carers’ worry. Patients described the impact on their ability to plan for the future, for example: “Knowing medication is important . . . because it is costly to get medicine, so you need to plan for it way ahead” (A027, cancer patient). Carers also expressed concerns caused by their lack of information—for example, a carer of a patient with AIDS and tuberculosis stated, “Even me, I’m coughing and coughing, I don’t know what’s going on and I’m getting worried” (E069C).

A lack of information seemed to reduce patients’ ability to care for themselves, whereas being fully informed helped them to manage their conditions better, as reported by an HIV positive patient: “Yes, I was told everything at the clinic about HIV and AIDS, and I think I have used that to my advantage, because here I am now, still alive and getting stronger” (B036). Similarly, unmet needs for information affected the quality of care that some family members were able to provide, as exemplified by the carer of a patient with AIDS: “It is not enough information, because there are things that you would like to ask or to know and I’m not sure where to get the information. The clinics are very busy and don’t have the time for the questions. I wish I could get the information, because one day she is going to be very sick and I won’t know how to look after her” (E068C).

Conversely, being well informed seemed to have a beneficial impact on some patients’ ability to cope. A patient with colon cancer, for example, described how being informed contributed to a sense of inner peace.

Interviewer: “Have you been able to find peace during your illness?”

Respondent: “Yes I did have peace.”

I: “How?”

R: “When they have explained about everything” (C065).

Another patient reported how access to information and open communication had helped her family to deal with the condition: “We discuss it, we talk about it. We are reading books about it. It has helped us” (E003, patient with ovarian and breast cancer).

Communication with general healthcare staff

Respondents reported both positive and negative experiences of communication with general healthcare staff encountered in hospitals and clinics. Poor communication with generalist staff was a central theme across the sites, as illustrated by a cancer patient at site A: “When I went to [X hospital], the problem we have is lack of information . . . you need to go through a proper process of information about what the disease is, the likely treatment, the side effects of that treatment, because there are several of them . . . I mean, [you need] that emotional support” (A027). This view was shared by a patient with prostate cancer at site E, who stated, “The information level is shocking, they [hospital staff] don’t even want to give you PSA [prostate specific antigen] results, you know, we’re not kids! And they think I don’t know what they think—that you’re going to die of fright if they tell you” (E017).

Four patients described the trauma of having bad news broken to them insensitively; for example, “I asked them if I was going to die. They told me that I won’t die if I take my treatment I will be given. I was shocked and shattered by the news. I cried a lot and pleaded with the doctor to kill me, because I felt I was already dead. I was referred to hospital and I continued with my plea, but a fellow patient who talked me out of that thought helped me” (B011, AIDS patient).

Across the sites, four patients and a caregiver described being misinformed by healthcare staff or test results not being shared with them. Two AIDS patients at site B illustrate this.

Interviewer: “When you started being sick did nobody ever suggest an HIV test?”

Respondent: “No, they never did the test.”

I: “How did you know that you had shingles?”

R: “The doctors told me, and they said that was caused by heat and never told me they can also be caused by HIV” (B035).

Interviewer: “Did they ever tell you what you are suffering from?”

Respondent: “No, blood samples were taken for various tests, but I never got the result” (B012).

At site E, four patients described feeling mistreated, objectified, or spoken to without respect while in hospital—for example: “Only the matron was rude. When I was very sick in X [hospital] . . . I want[ed] water so I pressed the bell. ‘Wake up and take the water,’ [the matron said]. I said, ‘I can’t wake up.’ I tried to wake up but I fell. Then my husband and my sister-in-law, they saw me, then my brother’s wife she went into the office and said, ‘How come when they ring the bell, they want water, you can’t look after the patient? She’s on the floor’” (E005, breast cancer patient).

Caregivers across sites discussed feelings of being shut out by “secretive” staff. Three caregivers reported not being told the patient’s diagnosis directly, but learning it from the medical notes or from being sent on a course. For example, one caregiver said, “Up until now I don’t know what’s wrong with her, I’m just presuming . . . because at [the HIV clinic] they educated me on HIV and caring for someone who is positive” (E064C).

However, positive experiences of communication with healthcare staff were also reported. A cancer patient described how her doctor helped her to break the diagnosis to her children, and two other patients reported a close relationship with staff. For example, a patient at site E, who was an ex-nurse, said, “Both my oncologists are fantastic. I see both of them, I started with Dr [X], and then she has a partner who I see when she’s away . . . They both know exactly what’s going on. You can ask them anything you like and the sisters there are all oncology trained, fantastic” (E004). The same patient described how open communication about prognosis, future care, and treatment options had helped her to come to terms with her condition: “Dr [X], the oncologist at [X hospital], told me all the dos and don’ts and said I could think about it . . . The doctor explained a lot, that every day there was something new and they could try all sorts of different things. She said that if I ran out of money she could arrange for me to be seen at the government hospital” (E004).

Similarly, the carer of a patient with HIV described the positive impact of receiving information from a clinician: “He [the patient] used to have his own plate, mug and a spoon until I went into [X] hospital and spoke with a doctor there. The doctor took me into a small room; it was me and the doctor only. He told me about [the patient’s] illness and he educated me that we can use the same plate. What I must watch out for is razor blades, enemas, and I must protect my hands if I’m doing the washing or bathing so that I don’t catch the virus. When I came back I called the whole family. I told them what the doctor had said to me. Now there is no problem. We use the same dishes, we share everything” (E041C).

Barriers to effective information provision

Across four of the sites (A, B, C, E), eight patients and five caregivers stated that they had had enough information about their condition but on further probing revealed unanswered questions and unmet needs for information. A 50 year old woman with cancer and AIDS illustrates this tendency.

Interviewer: “Has this information you have got from your doctor, and maybe other people, been enough for you?”

Respondent: “I feel I have got enough information about my illness.”

I: “What would you like more information about?”

R: “I need more information about what cancer actually is, if it can be cured, and how soon. I would also like information on any social or financial support I could get either around [the hospice] or from organisations” (A024).

This tendency seems to indicate low expectations of health care, which might also be cultural.

Three patients reported confusion or memory loss that made comprehending and retaining information difficult. This may have been as a reaction to receiving bad news or difficult medical information, a manifestation of the disease’s symptoms, or a side effect of treatment. For example: “Everything happened so fast that I can’t remember everything that I was told . . . I don’t remember the information they gave me then, so I don’t know if it’s been enough” (E062, AIDS patient).

Staff related barriers were also described. A patient and a caregiver from site E reported that general healthcare staff were often too busy or stressed to communicate well: “The clinics are very busy and don’t have the time for the questions. I wish I could get the information because one day she is going to be very sick and I won’t know how to look after her” (E068C, caregiver of AIDS patient). Three patients found the language used by staff difficult to understand and criticised healthcare staff for adopting a paternalistic approach to provision of information; for example: “They use words that you don’t understand and we have to ask, and there are times when they discuss you and your condition with other doctors or other medical doctors, you know, the student ones, while you are there. They discuss the whole thing about you while you just sit there, dumb, looking at them” (E003, cancer patient). Table 4⇓ summarises the barriers to effective provision of information.