Translations between studies using first-order and second-order interpretations and their relation to key concepts
| First author | Barriers to care | Communicating | Coordinating | Relationships and personal value |
|---|---|---|---|---|
| Admi | “An issue that was raised by the some of the patients was that the PCP's knowledge about oncology diseases was inadequate” | Patients accorded great importance to maintaining continuity of care and communication between providers on both sides of the interface | Most patients interviewed expressed a desire for their family doctor to take on the role of an integrator of care. One woman explained the rationale behind this: “My expectations from my family doctor are that she will be an integrator for the disease. There's an oncologist, a haematologist, a pain specialist. From my side, it's totally acceptable that she (my family doctor) should tell me that this is something she does not know. She knows me not only in regard to the illness, but also from my personality. She sees the whole picture. She sees me as a whole human being.” FG 5, Community, Patient 4 | In a number of instances, patients succeeded in advancing their care through the use of personal relations, either by relying on acquaintances within the system or by establishing a good personal rapport with a provider. In the words of one patient: “A patient with cancer must have connections, otherwise he gets lost in fairyland: go there, come back, wait, and so on.” FG 5, Community, Patient 5 |
| Bain | Tensions were perceived at the interface between primary and secondary care…there was a feeling among some participants that GPs and hospital doctors were, on the whole, not working together | A great deal of heightened anxiety was mentioned around the reporting of test results. “I was sent for a liver scan and I never got the result. That was a bad thing…The GP said he would find out for me, but I never heard…It was when I was back at the clinic I got the result then, 6 weeks later.” (male/60 s/urban) | “I find my doctor is feart (afraid) o’ the clout of the hospital coming back on him. He hedges round the question and he waits for the hospital to give him the answer. He won't actually come out and say anything.” (male/40s/urban) | – |
| Bain | For some patients, the GP was an advocate and they spoke highly of his representation on their behalf. Others viewed the GP as a ‘barrier’ to overcome and a hurdle to be negotiated, or ‘the one who controls your entry into the system’ | They were unhappy about the use of euphemisms such as ‘suspicious cells’, ‘rogue cells’ or ‘a growth’. Others found direct communication difficult to cope with. No one style of communicating bad news was ideal for all patients | Some did everything they could to speed their progress through the system. These were usually urban residents, who were experienced at ‘fighting’ to the front of the queue like ‘an ant in an ant hill’ and were intolerant of any delays; “Because my wife agitated and agitated I got in (main cancer centre) a month earlier.” (No. 21/male/60 s/urban) | For communication to be tailored to individuals, both good knowledge of the patient (usually the domain of the GP) and full understanding of the cancer and possible treatments (usually the domain of the specialist) appear to be needed |
| Beech | Other patients who required extended periods of rehabilitation encountered bottlenecks in access to bedded rehabilitation with the choice of discharge destination appearing to be driven by the availability of community hospital and intermediate care beds | Communication between professionals, particularly across organisational boundaries, remained problematic | In some cases, decision-making about ongoing care following an acute attendance or admission resulted in timely transfer and patient satisfaction with the process…a respiratory rapid response team assessed Mrs I after receipt of a referral from the hospital's observation ward, arranging immediate community follow-up after her brief admission. I just couldn't believe it. It all sort of clicked into place. I thought this is actually going to happen…I came home and I just couldn't believe it, the phone rang and they said ‘We'll be here in half an hour’—and they were. Mrs I, Site 2 | The patient journeys demonstrated the important role that family and friends play in providing follow-up care. For instance, one woman who lived alone received help from her son and friends for 2 days until a rehabilitation bed became available. However, such requests could put considerable pressure on informal carers |
| Berendsen | When asked directly, many patients said they found it either too difficult or felt too ill to make their own choices | All patients felt, however, that improvement is needed for the communication between GP and specialist. Information needs to be conveyed more rapidly, more completely, and, for the patient, the information should be more accessible | Almost all patients found it important that the GP referred them quickly and appropriately. They appreciated it when the GP was able to shorten the time span between the referral and the first consultation with the specialist, and when their GP stayed in contact with them after the referral | Many patients liked receiving information from nurses during their hospital stay or at the clinic. Reasons for this included clarity of the instructions, more extensive information, easy access to information and the thoroughness of nurses. Nurses can also help in communicating with the specialist |
| Burkey | Some patients were discouraged from asking questions because they felt rushed or that the doctors were very busy | Where patients had tried to discuss discharge opportunistically during consultations, they were often disappointed because letters from the hospital had not yet arrived or their GPs claimed not to have received this information. Patients did not know where responsibility for poor communication lay | They (patients) felt more confident about the discharge when they believed their GP managed the ‘gatekeeping’ role well and would be willing to refer or re-refer them when necessary. “I’ve every faith in him…Any problems I’ve got I just pick up the phone. He’s a very good doctor. He gets down to it you know and if he’s not sure he says ‘Right, hospital!’” | Most patients talked positively about the quality of the relationship with their GP. They felt their family doctor knew them as a person and cared about them. However, a few had more difficult relationships. The attitude of the individual GP seemed to shape patients’ views more than the size of a practice or way it was organised |
| Davies | “Everything takes so long to arrange. You arrange the tests, gap, you have the tests, you go back to the clinic. The gaps are always so big.” Case 20, 33 years old, male | However, there were a few cases where patients felt improvements could have been made to the approach, timing and privacy. “The only place that was empty was the cleaning cupboard, so we ended up sort of leaning against a wall in the cleaning cupboard while he told me how bad he thought it was.” Case 20, 33 years old, male | “She (PCP) did all she could. She sent me to one (specialist), it wasn't right. I went back and told her. She was annoyed; she sent me somewhere else. She didn't waste time.” Case 7, 52 years old, male | “No-one got in touch with me from whom I could sit down and seek advice from. It would have put my mind at rest. It was only after going to talk to the cancer specialist nurse it was only then that she told me that this cancer is a slow-growing cancer, a few days won't matter, a few weeks won't matter. You just need that information.” Case 7, 52 years old, male |
| Flink | “When the doctors are on their rounds, it's terrible. They come into the room, often with a lot of students, and then at first the doctor talks with the students for 15 min, teaching them; well, but I want to have a word with the doctor! So, this really distracts you.” (Man, 68 years) | Clinical rounds during the hospital stay and formal discharge encounters were seen both as a facilitator and a barrier to patient communication. A positive bedside manner, including the healthcare providers sitting down by/on the bed and talking to the patient in a relaxed manner, was seen as a facilitator | Some patients indicated they had not given much thought to their participation in the handover process. These patients either trusted the handover system and the healthcare providers’ performance or they did not consider participation in handovers a reasonable patient task | _ |
| Gobel | By contrast, the patient in the second case study viewed himself as an integral part of the handover, and felt responsible for the miscommunication: “I forgot to ask for a letter from my discharge physician for my GP” (quote 25) | The GP in the first case study reported she could not reach the patient after receiving a letter that the patient had been discharged home (quote 1), when in reality, the patient had been transferred to a nursing home (quote 20). The GP phoned the patient several times at home and, not being able to reach him, assumed he was staying at his daughter's house. The GP later learned (quote 3) that her patient had been transferred to a nursing home for rehabilitation. In addition, the GP believed her patient had been transferred to a certain nursing home, while the interview with the nurse revealed that the patient had been transferred to a different nursing home (quotes 3, 20 and 26) | The GP (and the patient) does need a summary of the hospital stay and what should or may happen next, could benefit from the anticipatory guidance, and how best to respond if these symptoms or outcomes change (‘what if?’). Understanding these mind sets may facilitate anticipatory management—‘if this happens, then do that’ | Other studies have also found that the most effective measures to support GP and specialist cooperation is to allow for easy telephone access (for patients and healthcare professionals), increase the timeliness of discharge letters, and create feedback between professionals through frequent meetings |
| Hesselink | Our findings indicate that hospital and primary care providers, both members of the same virtual ‘handover organisation’, have separate ‘professional tribes’ and have different, often incompatible values and beliefs that threaten to undermine the effectiveness and safety of patient transitions | _ | _ | Our findings also highlight weaknesses in the relationships of shared goals, shared knowledge and mutual respect between hospital and community-based healthcare providers. These ‘relational dynamics’ are associated with a lack of frequent, timely, accurate and problem-solving communication, in turn predicting low levels of quality and efficiency |
| Hesselink | Hospital nurses, patients and GPs mentioned difficulties in identifying and contacting the physician or nurse who treated them in the hospital. Patients are often advised to contact their GP, while GPs are not always up-to-date with the treatment that was provided and the follow-up that was advised during the hospitalisation | Patient: So, the cardiologist stood next to me and said all sorts of things in Latin. (…) I do not speak Latin! | Discharges on weekends; patient: At Friday they told me that I could go home the next day. But the offices are closed on Saturdays and they could not give me all the proper discharge information and equipment. (…) That was not pleasant. (…) So I did the medication and all other things on my own | Community care providers’ role in monitoring patients after discharge; patient: To be honest I did not receive any calls from my GP and I would have appreciated it |
| Kemp | Many patients reported that the lack of confidence in their GP and their GP’s lack of knowledge of IBD, often acknowledged by the GP, was a barrier to seeking their help. “He said to me ‘well actually you know more than me about this’…that’s what my GP said to me.”(P005) | They wanted to be listened to by a confident and knowledgeable practitioner, asked about how their illness was affecting them, and provided with a plan of action and goals. “I suppose you need two minutes to pour your soul.” (P020) | All patients valued the IBD nurse, who was central to the IBD team, a liaison and a constant identity in the hospital system. The patients were asked about the proposal for an IBD outreach nurse at the interface of primary/secondary care and were strongly in favour of this | The personal value of follow-up care was based on the relationship the patient had with their nurse and consultant, and the confidence they had in their knowledge of IBD. “Continuity, that’s what it is all about for me, my nurse, my doctor, they know me, they look out for me. I would have moved away from here but for them.” (P021) |
| McHugh | Participants reported little active management by health professionals in both primary and secondary care while on the waiting list and there was no reassessment of their symptoms | _ | _ | _ |
| Pascoe | Patients also need more information about the referral service and surgeon to whom they are being referred. Unfortunately, such information is often unavailable to the GP in a form that might help them make decisions about to whom to refer to | Communication between patient and surgeon and the quality of information provided were important in determining patient satisfaction with treatment. These factors also influenced how confidently patients made decisions about which treatment to accept. Poor communication was associated with poor satisfaction with treatment | Positive experiences were associated with information exchange between GP and patient during treatment and planning the involvement of other members of a multidisciplinary team. Information exchange was a specific strategy identified by patients to improve care. Anticipatory and preparatory information was perceived to be crucial to effective care and good outcomes | Given outcomes vary according to the patients’ place of residence and clinician variables, the findings regarding the importance of the patients relationship with their GP has significant implications for care coordination and psychosocial care across the total interval. This may improve outcomes for patients by decreasing delays and improving satisfaction, perception of choice and shared decision-making |
| Pollard | Many (21/37) expressed criticisms about GPs’ perceived lack of knowledge of RA and its up-to-date treatment (9/37) | Patients felt more comfortable discussing matters with specialist nurses, who both understood their concerns and had more time (7/37) | Patients emphasised the importance of immediate help and support during times of flare of their RA and/or emotional stress (14/37). They tend to approach rheumatology nurses first to gain access to specialists during flare-ups | “My GP, I have…I think I have lost respect…he hasn't really served me particularly well. I have to ‘play act’ when I see a GP. So I have to pretend that I am really ill and about to die before anything actually happens…I don't have a lot of faith in them.” (Patient 24) |
| Preston | The attitudes of reception staff in practices and outpatient clinics were often identified as presenting barriers, the consequences of which made patients feel ‘in the way’ or ‘a nuisance’ | They (patients) could experience feelings of discomfort and uncertainty which were exacerbated by lack of information or failures of continuity: “I had some further tests in early June and I have still not heard anything. I think that is one of the worst things…you are just left in mid air” | The coordination of different services, and the degree to which care continued across interfaces, were important preconditions for the smooth progress of patients through the system. Services which patients expected to be arranged were sometimes not provided or were delayed. Sometimes GPs were not informed of outcomes of their patients’ treatment or care: “Separate clinics don't talk to each other or ring each other. I find the whole thing incredible the length of time it takes; it's just been horrendous, waiting weeks to see a consultant to be told ‘I don't know why you've been referred to me’…It can make you feel very insignificant.” (Patient) | Relationships with GPs were often built up over a period of time, and, consequently, respondents often felt they had access to information and had some degree of participation in decisions about their care. In comparison, relationships with hospital doctors tended to be viewed as more impersonal, interactions being of limited duration and presenting fewer opportunities for sharing information and participating in decisions about care |
| Somerset | “a lot of the GPs have said, when I’ve gone up to ask about things, they’ve said they don’t have the knowledge and they'll have to ring up and find out things” (P:R2) “Hopefully the consultant will tell me what I can do and what I can’t do” (P:N1) | “they say it is not active but then why am I getting these hellish pains? …they’ve never really explained it to me” (P:R1) | When considering the extent to which they were able to influence events during their outpatient attendances, some patients maintained that they would actively seek information if they were left in any doubt about their care following discharge to general practice | _ |
| Walton | Timely GP referral to specialist care for investigation of symptoms suspicious of lung cancer was hindered by limitations in GP knowledge about interpreting symptoms and accessing the appropriate pathway | _ | In the context of lung cancer, given evidence of delay within the primary-secondary care interface, locating care coordinators within specialist respiratory services and encouraging strong links with primary care and cancer services seem sensible | Participants’ overwhelming feeling was that they had trusted and relied on GP guidance. Many attributed this to prior successful treatments for other conditions and on a longstanding relationship. GP treated me for 6 months what she believed was the flu and my asthma. Put me on antibiotics, steroids, inhaler…No chest x-ray, no specialist appointment until it was all too late. Maybe she didn't have the right knowledge; maybe I should've pushed harder but I've been with her for years. I trusted her. (Interview, Auckland) |
| Wilkes | Other infertile couples felt that these skills may not exist within general practice: “It is always nice to see the clinical consultants, these people specialise in this particular subject, therefore would you get the tyres for your cars changed at McDonalds?” (F6) | _ | All couples who experienced open access HSG assessment were surprised to learn that this was a service that not all GPs might offer. They felt that this should fall within their professional remit. The majority of couples who did not experience open access HSG felt that it was within the capabilities of the GP, but a minority would prefer direct referral to a specialist, to ‘someone who knows what they are doing’ | _ |
| Wright | “I feel happier coming here to talk about my problem…my mental health problems…with a specialist, rather than going to a GP, who’s fine but firstly they’re not a specialist and secondly they haven’t really got much time.” (Service User 14) | Such interventions need to straddle primary and secondary care services, be flexible and accessible, and provide effective communication and liaison between relevant health professionals | One or more individuals need to take responsibility for this role and we are currently developing and testing the feasibility and acceptability of a dedicated nurse facilitator who will monitor screening, encourage screening in either primary or secondary care and provide it him/herself if neither option succeeds | Preference for a service for the primary prevention of CHD in secondary care services was mentioned more frequently by people with SMI, often because they felt more comfortable engaging with mental health staff |
CHD, coronary heart disease; GP, general practitioner; HSG, hysterosalpingography; IBD, inflammatory bowel disease; PCP, primary care physician; RA, rheumatoid arthritis; SMI, severe mental illness.