Background
Methods
Interviewer prompts | |
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How do you feel about the care you received in hospital and rehabilitation? What was good and not so good about your care? What information or advice did you receive about your injury? Was this information written or verbal or both? Who provided you with information about your injuries? How useful was this information? Is there any other information you would have liked to have receive? Can you tell me about the types of treatments and services you are using now? How do you feel about the care you received with these services? Are these treatments and services meeting your needs? If not, how could they be improved? |
Analysis
Results
Descriptor | |||
---|---|---|---|
Age | Mean (SD) n (%) | 50.7 (15.5) | |
17–39 years | 17 (26.1) | ||
40–59 years | 24 (36.9) | ||
≥ 60 years | 24 (36.9) | ||
Gender | n (%) | ||
Male | 42 (64.6) | ||
Self-reported pre-injury disability | n (%) | ||
No | 57 (87.7) | ||
Mechanism of injury | n (%) | ||
Motor vehicle | 22 (33.8) | ||
Fall | 12 (18.5) | ||
Motorcycle | 6 (9.2) | ||
Pedal cyclist | 6 (9.2) | ||
Othera | 19 (29.3) | ||
Injury severity score | Median (IQR) | 17 (14–24) | |
Length of hospital stay in days | Median (IQR) | 11 (5.4–26.5) | |
Discharge destination | n (%) | ||
Home | 38 (58.5) | ||
Inpatient rehabilitation or hospital for convalescence | 27 (41.5) | ||
36 month outcomes | GOS-Eb | n (%) | |
Upper good recovery | 19 (29.2) | ||
Lower good recovery | 7 (10.8) | ||
Upper moderate disability | 22 (33.9) | ||
Lower moderate or severe disability | 17 (26.1) |
Theme | Health professionals | Patients |
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Discharge planning | • Provide written information about post discharge services and points of contact for advice and assistance • Engage patients in collaborative discharge planning well before their expected date of discharge | • Initiate discussions with health professionals about discharge long before the expected date of discharge |
Multimodal communication | • Provide information in different modes such as verbal, written text, pictures, and photographs | • Request written information and/or for information to be presented in alternative formats e.g. pictures, audio-visual etc. |
Information provision and sharing | • Provide detailed explanations about patients’ injuries, treatments, expected recovery and future • Provide tailored information consistently and repeatedly throughout acute and recovery phases of care • Provide information in plain English to patients or in their preferred language • Ensure comprehensive and timely information is communicated to health professionals across care transitions involved in patient care | • Raise issues with health professionals during interactions, even if not asked • Ask health professionals to repeat information in plain language if the information is not clear or understood • Request to speak to a doctor privately if health professionals visiting in groups |
Information coordination | • Check with patients how information provided fits with information received from other health professionals | • Request health professional assistance with integrating information from multiple health professionals if required • Have a trusted relative or advocate to assist with the coordination of information |
Active communication | • Use communication approaches that are patient-centred • Ensure regular face-to-face contact with patients • Actively listen to patients and encourage them to share information and to ask questions • Respond to patient concerns with potential solutions | • Actively question health professionals during communication • Actively engage in communication with health professionals to obtain information about health, health care and services |
Investigate | • Follow up on patients post discharge to check how they are managing | • Follow up on information that health professionals say will be organised, but does not eventuate • Follow up on unresolved issues in reasonable timeframes • Persist with finding health professionals that meet individual needs |
Organisations | ||
• Ensure information available to staff and patients with regards to contacting patient advocacy groups and when their services could be useful • Provide accessible translator services • Provide trauma coordinators to assist with cultural, information and services navigation • Ensure all notices, information and instructions, within the hospital and provided to patients, comply with best practice for health literacy |
Information needs
Information needs at phases of care
Hospital care
Of the information provided in hospital, many patients were satisfied with the way in which it was communicated. Doctors and nurses were often referred to as ‘reassuring’, ‘professional’, ‘clear’ and/or ‘respectful’ in their verbal communication. Some patients perceived specialist doctors’ communication as effective when information was freely provided about the extent of their injuries, treatments (including what was done in surgery), immediate plans, and prognosis. Detailed information was appreciated when it was communicated in different modes, such as verbal, written text, visual (e.g. pictures, drawings and photographs), as this improved patients’ understanding of complex and unfamiliar information, such as surgical procedures. At a time of uncertainty and confusion, one patient recounted a positive communication experience during her hospital stay:“I would have liked more information at the early stages, exactly what was going on. Like a description of what my injuries were and what the treatment has been to that stage and why that treatment has been done, and what the future holds.” Male_40–49yrs_non-transport injury_multiple injuries_hospital care_#211
“He (the surgeon) drew pictures for me. I knew exactly where the breaks were, where the plates were going to be inserted and how they were going to be inserted…. And he just explained it really, really well and the pictures were great.” Female_40–49yrs_non-transport injury_head injury_hospital care_#228
Rehabilitation care
Information provided by speech therapists, occupational therapists and physiotherapists was appraised favourably when it provided clear instructions on how improve and manage disability, regain or maintain strength, and use mobility assist devices. Many participants appreciated physiotherapists’ communicating recommended exercises, particularly when this information was physically demonstrated and personalised for the patient:“I’d say the nurses, the care, how personable they were towards you gets you through. There were a number of days where I’d given up, I’d had enough. And you just end up having a nurse in your room talking to you for 20 minutes, half-an-hour, just about whatever.” Male_17–29yrs_road traffic injury_multiple injuries_rehabilitation care_#581
“The physio was good… he gave me exercises to do and just to strengthen up the areas that I damaged…he actually gave me instructions on what to do and showed me in which direction to move it.” Male_50–59yrs_road traffic injury_multiple injuries_rehabilitation care_#169
Inpatient discharge
As patients had primarily engaged with specialist doctors while in hospital (and rehabilitation, if attended), some sought clarification and details about the role of the general practitioner (GP) in their recovery after discharge. One patient who had never been hospitalised before reflected:“As I was leaving hospital, or before I was discharged, something could have been said about some kind of counselling or just some kind of number to contact.” Female_30–39yrs_non-transport injury_multiple injuries_hospital discharge_#130
“It was never properly explained to me the role in my recovery of the (name of hospital) versus my local doctor. And it was only down the track that I discovered that it was my local doctor who had taken the handover in terms of… overseeing my recovery. That was never made clear to me.” Male_17–29yrs_non-transport injury_multiple injuries_rehabilitation discharge_#101
Community care
Up to 3 years post-injury, patients mainly interacted with surgeons, medical specialists (such as ophthalmologists or neurologists), GPs, psychologists, and physiotherapists. From surgeons and medical specialists, patients expressed the need for information on long-term treatment plans, recovery timeframes, managing ongoing disability, and pain management. Enduring disability of any level drove some patients to peruse information about how to improve their condition, as it often impacted negatively on their quality of life. One patient recounted that to obtain this information, it required a doctor who would acknowledge the personal impact of her disability and communicate in an empathic manner:“I came out of rehab on a very strong course of medication, and I really didn’t know who I should be speaking to about that… I wasn’t sure I needed it anymore but couldn’t get a definitive answer anywhere on that.” Male_40–49yrs_road traffic injury_multiple injuries_community care_#611
Patients consistently reported wanting GPs to provide information on managing, treating and reducing persistent physical and psychological disability and chronic pain, as well as return to work. Information on improving strength, fitness, range of motion in damaged joints, and increasing mobility was also desired from physiotherapists. While overall, patients were pleased with the information and treatment received from most physiotherapists, sometimes it took time to find one with a compatible communication style. Several patients reported similar difficulties with developing rapport and the communication of information when engaging with GPs and psychologists/psychiatrists:“I have lost taste and smell. When I did see the neurosurgeon, he said to me, ‘Well, get over it, get on with it’… For me, I find this very distressing... I’ve actually switched doctors because I want to know, is there anybody that can help me… I would like to be able to talk to somebody who could say is there any exercises that I would be able to train my brain in order to get those neurons working and the nerves working.” Female_60–69yrs_non-transport injury_head injuries_community care_#992
“The guy that I spoke to was a psychiatrist, he couldn’t relate to me. He had done every qualification under the sun and he actually didn’t have any idea what I was talking about.” Male_17–29yrs_non-transport injury_spinal and other injuries_community care_#266
Accessing, using and understanding information
Clarity of information
“I suppose just a bit more of an overall understanding of what was (surgically) happening. So a bit more information, just of a general nature rather than specific medical sort of speak, just, I suppose in layman’s terms.” Male_40–49yrs_non-transport injury_head injury_ hospital care_#568
Consistency of information
Another patient recalled how inconsistent information resulted in uncertainty about a diagnosis that had implications for different treatment pathways.“The discharge summaries, the one I got from (name of rehabilitation) and one I got from (name of hospital), are completely different in explaining what happened and what I can do now.” Male_17–29yrs_road traffic injury_multiple injuries _community care_#860
“My psychiatrist has got one opinion and the GP has another opinion, and they’re completely different opinions. So I don’t know if I go for the experience of the psychiatrist, or the GP, I don’t know. I’m not medically able to do that. I’m relying on them to tell me. I’d like to know if I got dementia or Alzheimer’s or it’s just symptoms of a closed head injury.” Male_40–49yrs_road traffic injury_multiple injuries_community care_#689
Access to information
“Because once you get your discharge it’s like you’re on your own. You got to do it yourself... you feel sort of alienated...” Male_30–39yrs_road traffic injury_multiple injuries_community care_#688“… when I came out of hospital they were going to send me to a physio place where I stayed on the premises… but that didn’t come to fruition … and I found myself probably going to gym by myself or perhaps swimming by myself, and not sure what I was doing.” Male_60–69yrs_non-transport injury_multiple injuries_ hospital discharge_#092
Information coordination
Family members played an important role in the coordination of information, particularly for the period of time patients reported being unable to process information themselves, which was typically in the hospital setting. Some of these family members were health professionals or had knowledge of health systems. Several patients mentioned the value of having a person to coordinate information on their behalf when in hospital:“I didn’t have one particular person giving you all the information. It was just the medical staff as they came through. It was only at the end that I recall, that I got the information all put together.” Female_60–69yrs_road traffic injury_multiple injuries_hospital & rehabilitation care_#415
After hospital discharge, some patients expressed that having one person to coordinate information and serve as a single point of communication for patients and health professionals involved in their care, would have been beneficial:“My wife, who is a division one nurse, was with me most of the time, and she would be passing on most of the information, and she’d be getting it off the doctors, because I was sort of half in a trance most of the time.” Male_40–49yrs_non-transport injury_multiple injuries_hospital care_#335
Another strategy to assist with the coordination of information proposed by multiple patients was the provision of written information. The impact of operative medications, analgesic side effects, emotional reactions to serious injuries and their suddenness, or mild to moderate head injuries, affected many patients’ abilities to comprehend and retain information. As verbal information was often relayed at times when patients’ cognitive function was suboptimal, many suggested that the provision of documentation could mitigate this issue:“A case manager… someone that has a good look at everything and make sure that all the information is passed on to the patient, as well as anyone dealing with them: patient and family. It all seems to be like a big sort of a lot of people fixing different parts of you and no-one thinking to put all the information together and let you know, or anyone.” Male_40–49yrs_road traffic injury_multiple injuries_community care_#773
Some patients suggested that providing information later in the recovery process, when clarity had returned, would have enabled more informed and appropriate decision making:“For me it would have been no good telling me anything at (hospital name). Perhaps if (hospital name) issued you ... a (written) summary of what your injuries were when you were brought in, what you were diagnosed with and resulting treatments that they performed.” Male_17–29yrs_road traffic injury_multiple injuries_rehabilitation care_#581
Some patients expressed concern about the organisation of their information between hospital and primary care providers. The communication of information, such as follow-up appointments and hospital discharge summaries, was remarked by patients to be predominately the responsibility of health professionals. When insufficient, untimely or unclear information was transferred, some patients perceived their health to be unnecessarily compromised:“… having come off the medication, I had a lot more comprehension and ability to focus, and being taken through everything then, I might have done things a bit differently in my next steps.” Male_40–49yrs_road traffic injury_multiple injuries_hospital care_#611
“I was told I was supposed to go back in a month’s time ... and have a follow up x-ray. When I rang to get that organised no-one knew about it (or) me and they had no idea what I was talking about… I didn’t have any more X-rays… but I still had broken ribs… So my right lung wasn’t working properly, and that’s why I got pneumonia.” Male_40–49yrs_non-transport injury_multiple injuries_ community care_#533
Communication needs
Favourable communication attributes
“Just the interest that they took in me and just the thoroughness of it all really. I could discuss it with lots of doctors. There was lots of people there I could talk to, it was always good.” Female_50–59yrs_road traffic injury_multiple fractures_hospital care_#169“I could talk to him (GP) about anything. I started off seeing him twice a week, but if I needed to see him they always squeezed me in. I credit him a lot for my peace of mind. You can ask him anything… and he doesn’t treat you as if you’re stupid.” Female_60–69yrs_non-transport injury_multiple injuries_community care_#214
Unfavourable communication attributes: a lack of patient engagement
Many patients reported not being engaged in communication about discharge planning. Failure to consult patients early in the discharge planning process limited the amount of time available for the patient to address and resolve concerns. This was particularly challenging for the many injured patients who were in rehabilitation for extended periods and who were going to require ongoing service engagement (e.g. physiotherapy, occupational therapy, carers) when at home:“I just think they (surgeons) could have asked me was there any issues, because I did have issues. I had a neck issue, and I still have a neck issue….” Male_60–69yrs_road traffic injury_multiple injuries_community care_#381
“So it seems like you’re going along, you’re doing your rehab, you’re attending, you’re making progress and then all of a sudden they’ll come to you and say okay, you’ll be finishing up in a couple of weeks – that’s it... it seems a lot like they don’t engage the patient very well.” Male_17–29yrs_road traffic injury_multiple injuries_rehabilitation care_#102
Unfavourable communication attributes: dismissal of patient concerns
My GP, I’m not happy at all... all he does is write out narcotics (prescriptions). It’s more than one at a time. They are different ones, and to take together. I was asleep nearly all day and night. I can’t do that… He doesn’t even examine me… I feel as though I go in there and he just wants to get me out. Female_60–69yrs_non-transport injury_multiple injuries_community care_#980