Themes emerging from content analysis of carer evaluations
The themes emerging from the comments covered the following:
accessibility of health professional,
enlisting help from other agencies,
provision of equipment and supplies,
attitude or behaviour of health professional during interactions,
relationship with health professional,
support for carer,
information regarding patient's illness, and
symptom control.
Although the vast majority of comments underlying each theme were positive, approximately a fifth of carers made negative evaluations or provided a balance of praise and criticism. As such, each theme is derived both from positive and negative comments.
Accessibility. By far, the largest evaluative category reflected the accessibility of health professionals. Of the 60 carers, 46 mentioned the accessibility of the GP and 38 the accessibility of the district nurse. The majority of these were comments about health professionals' willingness to visit (43 carers regarding GPs; 31 regarding district nurses):
Carer:‘His doctor would pop in whenever she could’ (Case 194.)
Carer:‘[The GP] used to call, he used to make a point of calling’.
Interviewer:‘So he'd just come without you having to ask?’
Carer:‘Oh, yes’ (Case 232.)
‘Well, I think maybe if they [GPs] had come out a little more often they might have … with a doctor's visit, they don't always see the actual, well, in [patient's] case, the agitation, I mean sometimes he was so restless he was scratching about in the bed and struggling to get out and that sort of thing. The doctors didn't see that because perhaps they could come at a time when he was resting more … I think they didn't perhaps see just what the problems were in some ways, but they were very good. I'm not making complaints.’ (Case 353.)
‘When I needed [the district nurses], they came every day. Towards, you know, the last 3 or 4 days they came every day, sometimes twice.’ (Case 269.)
Some carers also noted the ease or difficulty with which the doctor or nurse could be contacted (15 regarding GPs; six regarding district nurses):
‘To me what was very helpful was her GP because I knew I could pick the phone up and ring him anytime. He did say ‘don't hesitate to ring’ which was very, very helpful — knowing I could do that.’ (Case 360.)
‘[It was] difficult to get in touch with [the district nurses]. We had to either ring the surgery up or ring the place at [x] where their offices are and some days they were not sure where they were, they couldn't get in touch with them either, or they had ‘just gone’ and they did not know where they would be within the next hour or so.’ (Case 298.)
Included under this theme were also a few instances of delayed arrival (four instances) or unpredictable arrival (two) once a home visit had been promised; difficulties in getting hold of one's own doctor versus a locum (four); and the willingness of the GP or district nurse to stay beyond the designated time when problems developed (three). Each carer may have commented on more than one aspect.
Several comments within this theme showed professionals going beyond their remit to make themselves accessible, that is, providing their home telephone number, showing willingness to be contacted or to visit when not on duty, and staying beyond the hours of duty (14 regarding GPs; five regarding district nurses):
‘[The GP] was just really good, and the last weekend … he wasn't on duty, but he came out, he gave me his home phone number and that I thought was brilliant.’ (Case 218.)
‘… I rang the doctor at home because I'd got his unlisted number and his wife answered the phone, and I said that [the patient] wasn't very well and he wanted to see the doctor, and he was at the camp at [x], so she said ‘Well, don't worry … I'll get him to ring you’. And he didn't ring me, he turned up.’ (Case 233.)
Enlisting help from other agencies. Another important category concerned professionals' efforts to enlist or ensure appropriate support or action from other agencies. Twenty-two carers mentioned the GP in this respect, and 21 the district nurse. This mainly related to recruitment of other community support (14 GPs; 17 district nurses):
‘When Mum was becoming ill [the GP] put us onto all the appropriate people that she needed’ (Case 199.)
‘[The district nurse] was absolutely terrific, and she enrolled anybody and everything that she felt that I needed.’ (Case 236.)
‘[The district nurse] was really on the ball, you know. Once she thought that mum needed help in any way, she organised it. She was fantastic.’ (Case 284.)
Eight carers also commented on hospice involvement being ensured for admission and/or specialist support, and five on the GP putting in effort to obtain hospital appointments or tests:
‘… my doctor rang [the hospice] and said, “You have got to find a bed, she must have a rest”, which they did.’ (Case 201.)
‘… it had got worse and worse and worse … and the GP said he'd phoned [the hospital consultant] three times in one day and said “You must see [the patient], she's really deteriorating” and after much humming and aahing and “Do you really think this is necessary?” and so on, and my conversations with a rather snooty secretary, I managed to get an appointment …’ (Case 354.)
Provision of equipment and supplies. Twenty-five carers mentioned district nursing efforts to ensure availability of equipment and supplies, including the supply of medicines (three instances). Three carers mentioned the GP regarding supply of medicines and two regarding ensuring financial help:
‘We got great support from the district nurse … when we were running out of supplies she would steal supplies from somewhere. We got through a lot of pads and waterproof sheets, those papery things that you put on the bed and we got through loads of supplies and they always kept turning up … if we were getting low on something it turned up from somewhere. How it turned up I've no idea. I think they were breaking into warehouses and things [laughter]. That was great.’ (Case 400.)
‘… if the doctor wanted to give [the patient] some other form of pill or something like that, I didn't have to bother to go and get the damn thing. Either the district nurse brought it or the next time the doctor came, she brought it …’ (Case 225.)
Attitude or behaviour during interactions. Twenty carers commented on GP behaviour or attitude during interactions, and four regarding district nurses. Attitude (for example, being kind, caring, sensitive, sympathetic) was mentioned by 12 carers regarding the GP and by one carer regarding the nurse:
‘I just couldn't believe a doctor could be sort of so caring.’ (Case 312.)
GPs' attitudes towards unconscious patients in particular appeared to make carers pleased or upset (five instances):
‘[The GP] was very, very good and he absolutely refused to sort of say anything in front of [unconscious patient]. Every time … he came downstairs and talked to us about it which I thought was very sensitive, very, very good … I'm sure [the patient] could understand.’ (Case 370.)
‘He was in and out of consciousness all the time, you see? … and that was when we could have willingly strangled that doctor … and she came in. So she said “What's the trouble?” So we told her. She came round here. She stood in front of him. She said “We know he's got cancer and know he's not going to get any better and there's nothing we can do for him.” She didn't know he couldn't hear what was being said, ‘cause he could.’ (Case 394.)
Behaviour (for example spending time with the patient, talking, listening, engaging in joint problem solving) was noted by 10 carers in relation to the GP, and by three carers in relation to the district nurse:
‘The GP was always prepared to listen …’ (Case 207.)
‘Whatever doctor came, whatever time during the day or night the doctors came, they had time. It was like they didn't have to go to anyone else.’ (Case 294.)
Relationship with health professional. Fourteen carers mentioned the relationship with the GP, six with the district nurse. Six carers noted the patient's personal liking for, or trust in, the GP, and two the nurse:
‘… she liked [the GP] and respected him very much and there was a very good, trusting relationship.’ (Case 387.)
Common ground between the patient and professional beyond the clinical interchange was described for GPs in three cases, and the district nurse in one. This included interests and same gender rapport:
‘Being a lady doctor they had a lot in common, roughly the same age, you know, women and women. You know what I mean … perhaps it was woman to woman and women understand women better than anybody else.’ (Case 250.)
Seven carers mentioned the importance of familiarity with the GP, and three with the district nurse — particularly when a problem occurred:
‘… but Mum, she just had too much of different people [coming in]. She knew the district nurse from the practice, so that was fine.’ (Case 256.)
‘… you felt you didn't really want a doctor who you didn't know coming in at that point.’ (Case 455.)
Support for carer. Nine carers noted support provided for themselves from the GP, four from the district nurse. These statements indicated that the professional specifically talked to the carer and checked how he/she was doing:
‘[The GPs] were very, very good and they were good to me as well after they'd been talking to my husband, you know, they used to come and sit here and talk to me as well.’ (Case 376.)
‘And naturally the doctor kept on coming, but he couldn't do anything, just came to see if I was alright, that's all I reckon [laughter]’ (Case 409.)
Information about the patient's illness. Seven carers commented spontaneously on the information given by the GP about the patient's illness. Four felt they had not had enough information, two in particular because of their caregiver status; three praised the GP. Two carers also praised the information given to them by the district nurse:
‘I said to [the GP] “well can you tell me about [the patient]?”… and he said “he's my patient, no I can't talk to you about him”… and so it was like hitting your head against a brick wall …’ (Case 215.)
‘[The district nurse said] “Is there anything you're worried about?” and I said to her, “Yes I am. I want to know what I've got to look out for.” I said “I know we can't stop it but if suddenly something happens and you're not expecting it, it's much more frightening than if I know what might happen” and so she told me the things that might happen … I said “Well thank you … now I know how to cope”.’ (Case 455.)
Symptom control. Eight carers made spontaneous evaluative comments about symptom control by the GP. These mentioned failure to control nausea, pain, or constipation; three commented on instances of inducing unwanted coma or hallucinations through drugs, and two mentioned instances of the desire for more sedation to control anxiety or restlessness. One carer felt nurses were very slow to respond to the patient's inability to pass urine:
‘… the frustration there was because constipation seems such a straightforward thing … she couldn't understand, we couldn't understand why it couldn't be sorted out.’ (Case 387.)
‘A doctor came … not her normal doctor, and prescribed … extra morphine tablets or upped the morphine and after she took those she was sort of zonked out; she was nowhere, absolutely zonked. We thought, not knowing, I think … “Is this the time, sort of thing?” … she was completely gone.’ (Case 237.)
Miscellaneous statements. Of the remaining statements, four carers praised the district nurses' competence. Competence was, however, questioned in three instances (one GP and two district nurses). Six carers commented on GPs' speed of specialist referral in response to early symptoms: one positively, five negatively. Two carers praised arrangements for follow-up by a named GP while the patient's regular GP was away and two commented on coordination of services: one positively, one negatively.
Introduction of specialist equipment into primary care had been delayed according to two carers. In contrast, one carer praised the GP's proactive approach to the introduction of specialist equipment. One district nurse team was praised for grasping an early opportunity to become familiar with the patient, one criticised for failing to do so. Aside from these, no other aspect of care was mentioned by more than one carer.
Relationship between themes and background variables. The above themes were considered in relation to diagnosis, patient age, and carer age. There were some differences in theme content relating to patient age. When evaluating accessibility, only one in 10 carers of patients under 75 years of age reported poor GP accessibility and a third described exceptional accessibility (for example, giving home phone number or visiting off duty). In contrast, a third of carers of patients aged 75 years and above reported poor GP accessibility and only one in 10 reported exceptional accessibility. When evaluating the provision of equipment or supplies, none of the carers of 13 patients under the age of 75 years criticised district nurse efforts, compared with a third of the carers of patients aged 75 and above. There was no evidence that this pattern could be attributed to cancer diagnosis, and no other patterns emerged for the background variables considered.
