Improving patient experience and outcomes following serious injury

A trauma system is an organised, coordinated effort in a defi ned geographic area, which delivers the full range of care to all injured patients, and is integrated with the local public health system with a focus on prevention.1 Injured patients have the best chance of making a good recovery if the trauma system performs well and is effectively integrated into wider health and social care systems, leading to lower mortality rates, reduced lifelong disability and improved quality of life, with demonstrated cost savings to the health system. ABSTRACT

Serious injury means that the patient met the eligibility criteria for the study and was admitted to Waikato Hospital with the possibility of long-term functional defi cit.Eligible patients had complex injuries; that is, they experienced injuries to two or more body regions or one signifi cant injury to one body region with the possibility of long-term defi cit.3][4][5][6][7] This is the fi rst qualitative study to investigate the experience of Waikato Hospital trauma patients and their whānau as they transition from inpatient surgical services to community-based care.The fi ndings will inform system changes to support improved health, vocational and social outcomes for injured patients.

Setting
Patients were identifi ed through the Midland Trauma System's population-based trauma registry, which captures data on major and non-major trauma patients admitted to six hospitals within the Midland region of New Zealand.The MTS registry has the following eligibility criteria (Midland  Trauma System, n.d.) and can register over 200 data points related to each major trauma event:

•
Admission to a Midland hospital as a result of and within seven days of injury

Sampling strategy
The following patients were eligible to participate: • 16 years of age or above • Injury Severity Score (ISS) 8 equal to or above 8 • Blunt trauma mechanism • Waikato Hospital as the defi nitive acute care provider Exclusion of injury within the Abbreviated Injury Scale (AIS) body region 1 (head/ neck).The AIS is an anatomical scoring system that grades injuries on a scale of 1 to 6 to assess the potential for risk to life; an AIS score of 1 is minor and 6 is refl ective of a non-survivable injury. 8 A heterogeneous purposive sample of all eligible patients was used to target sample diversity across gender, age and ethnicity. 9-11A total of 17 participants were recruited to the study, including eight patient participants (up to 12-months post-discharge), eight patient-nominated key support people, and one patient-nominated health professional (an occupational therapist).Only one patient participant felt able to nominate a health or social care professional involved in their care.Participants provided consent prior to interviews and were informed that the interview questions may raise issues that could cause distress.If this occurred, the distressed patient protocol was applied, and participants were provided options for follow up.
Ethics approval was gained from the Health and Disability Ethics Committee NZ (HDEC), and project approval provided by Te Puna Oranga Maori Consultation Research Review Committee, Waikato District Health Board.

Data collection
A total of 17 participants participated in semi-structured, in-depth interviews rather than focus group, to enable participants to speak freely about their experiences and perceptions. 12Kanohi ki te kanohi (face to face) interviews were offered to encourage trust, which is critical to engagement and relationship development with Māori. 13The interviewer was not known to the participants.The purposive sampling was done by an MTS hub data analyst and details of potential patients were kept confi dential from the researchers and interviewer.Participants were recruited to the study and interviewed until saturation occurred (which was earlier than anticipated).Saturation occurred when the same themes were recurring, and no new insights into these themes were given by additional sources of data.Patients were invited to participate in one interview (by telephone or kanohi ki te kanohi) up to 12 months post-discharge. 12All interviews were conducted between 1 October 2017 and 30 November 2017.Interviews were recorded with participant consent using a digital voice recorder.A topic guide (Appendix) was used to provide interviewer prompts of key issues for exploration, including the injury; treatment of the injury; experience with compensation agencies; impact on work life, home life, transport and health; communication and cultural needs; and perception of recovery.

Data analysis
Each interview was transcribed from the audio recording for analysis using the NVIVO Version 8.0.Braun and Clarke's 14 six-phase process of thematic analysis was used to identify important thematic groupings and the relationships between them.Transcripts were read a number of times to ensure consistency of meaning of individual responses, initial codes were given within each interview, then compared and integrated across the entirety of the transcripts enabling theme development (AB and KO).Two researchers coded the data and confi rmed the themes to ensure the thematic analysis was authentic and of good quality.AB is an experienced health services researcher (PhD) with extensive health services research experience in areas other than trauma and critical care; KO is an emerging researcher and registered nurse (RN, MN, Crit Care) with 30 years' experience working intensive care, emergency department and remote area nurse in Australia and New Zealand.Larger, broader themes developed and were able to be described and labelled.Participant quotes were included to illustrate patient experience themes post serious injury.

Participant profiles
The ages of patient participants ranged from 16 to 79 years (Table 1).All patient participants nominated a key support person; however, of the eight patients interviewed up to 12 months post-discharge, all but one could not identify who was responsible for their care coordination following discharge and were therefore not able to nominate a health or social care professional to participate in an interview.The one patient-nominated health professional was an occupational therapist.
Patients perceived their pre-hospital and emergency care as high quality and highly valued the compassion of staff, although expressed concerns regarding access to psychosocial services, reliance on key support people, poor communication and information provision and a lack of preparedness for discharge, and coordination of post-discharge care.
The need for routine screening and access to psychosocial services All patients perceived ongoing physical and emotional stressors associated with the initial traumatic impact, regardless of the time since discharge.Several patients reported hiding their physical and emotional concerns from their key support person to avoid upsetting them, which added to the sense of isolation they were already feeling.Ongoing effects such as pain, fatigue, reduced memory, emotional instability, physical decline and fi nancial pressure caused concern for the future and the unknown likelihood of returning to pre-accident health.Some patients returned to work earlier than they should have, misrepresenting their recovery to their doctors in order to get clearance for work.

"As soon as I got the clearance I just went back, even though… I still can't close my fi ngers properly. I'm forcing myself to squeeze it and just do my jobs. I needed that money because I had bills to be paid… I just felt hopeless. Because I couldn't support my family or do anything for them." -Steven
Patients, their key support people, and the nominated service provider all stated that earlier access to psychological care or counselling could have avoided escalating issues and concerns regarding restoration of function.

"… I would have much preferred earlier access to counselling. It still would have been diffi cult after hospital, but it probably would have shortened the amount of time [for recovery]. I wouldn't have lost a lot of my life… lost a lot of dignity, all that sort of stuff. …I was in a really, really dark place and I was quite suicidal for a long time." -Elizabeth
Improved access to counselling services following routine psychological screening initiated in hospital, was one of the practical recommendations suggested by patients and key support people to improve the patient experience following serious injury.

Pivotal role of the key support person
All patients were highly appreciative of the support provided by key support people and the crucial role they played in recovery, stating their key support person was the primary factor that facilitated recovery.Recognition was afforded to the key support person for preserving order during a perceived tumultuous time and maintaining communication with everyone; family, friends, (in some cases) the media and service providers.All patients were concerned with the concept of carer burden, as often the key support person would have to assume the extra fi nancial obligations, home responsibilities, carer duties, become the patient's champion when dealing with service providers, and preserve the memory of events patients were often unable to recall due to analgesia and/or turmoil during the acute hospital phase.

Inadequate communication and information provision
The quality of patient care is improved when members of the healthcare team work in collaboration to share their patient care perspectives, yet many barriers exist that can obstruct a team-based system. 15,16hile all participants were satisfi ed with the overall care they received during their admission and were highly appreciative of the pre-hospital and emergency care they received, all participants shared concern regarding communication during rehabilitation (in-hospital and at follow up clinics).
"The biggest problem was communication from day one.The ambulance were brilliant, the trauma team [emergency department  staff] were brilliant and then it turned to custard, to put it politely.There just hasn't been any follow up..."

-Karen
A lack of staff continuity also contributed to feelings of insecurity from being lost in the system, and unfamiliarity with staff contributed towards a perception of confusion as to who was caring for them and in what capacity.

"In the hustle and bustle of the weeks at hospital things got overlooked… you'd go through three or four shifts of nurses and think have any of them reminded (her) to do that."
-Sibling, key support person Reported lack of communication both in hospital and at follow up clinics, resulted in missed (minor) injuries, and some delays in treatment, which patients and key support people felt affected their confi dence in the care received and recovery time.

Lack of preparedness for discharge
Communication surrounding discharge processes was described as a signifi cant concern and the discharge process itself was felt to be ad hoc rather than meeting patients' expectations of a meticulously considered practice.Almost all patients reported distress when medical staff sought discharge as they reported no prior discussions with them about going home.Discharge was generally required on the day and did not always acknowledge and address home conditions and the provision of discharge supports.Patients and key support people reported that discharge from hospital was perceived as stressful, and many felt ill prepared for discharge.All reported apprehension at the perceived lack of discharge planning.Key support people were alarmed at the thought of the responsibility of caring for their family member without adequate resources as they had expectations of being supplied with equipment, which may have been eased through referral to allied health to assist with discharge planning.
"There was a bit of… we'll just push you out the door and you can go home …because (my husband) wouldn't have been able to look after me and there was the conversation of is there anyone at home that can look after you and I was like well not really …if I'm in trouble he's not really going to be there to help me out.I explained to them my house… is… old… and I've got pets, toilet outside, awkward little steps and stuff, and at that stage I was still sleeping sitting up in the hospital bed because I couldn't lie fl at, but they wouldn't listen and discharged me anyway."

-Tina
A further practical recommendation suggested by patients and their key support people was to ensure more specifi c discharge information and preparation is provided for patients and key support people during the hospital stay and before patient discharge from hospital.

Lack of coordination of postdischarge care
A consistent emerging theme was the sense of a lack of coordination of post-discharge care, and the absence of a consistent point of contact for ongoing management.Frustration at the lack of communication surrounding follow-up appointments was frequently expressed.Participants reported multiple appointments on multiple days of the week with physical, social and fi nancial consequences.Patients commonly reported staff in outpatient clinics requesting regular follow up for them, but not receiving appointment invitations.This produced a lack of confidence in the current booking system.

"I think it was two appointments one day and the third appointment was about three days later. Because they were all in Hamilton, I did try and get them all on one day and it just wouldn't work. It's… extra travel and time. …everything is based in Hamilton and that's an hour's drive, and yes ACC do pay for that but when you go an hour there, an hour back plus the appointment it's actually a big chunk out of the day." -Belinda
A further practical recommendation suggested by patients and their key support people was that travel to follow up appointments could be avoided through the use of a virtual trauma clinic, where possible.Patients and key support people believed this would reduce much of the disruption and the tangible and intangible costs associated with attending clinics.

Discussion
This study is the fi rst to provide a detailed description of patient experiences following serious injury and admission to Waikato Hospital.It highlights perceived issues and limitations in the patient care pathway following serious injury, especially relating to access to psychosocial services, the high level of reliance on key support people, inadequate communication and information provision and a lack of preparedness for discharge and coordination of post-discharge care.Despite signifi cant issues with parts of the transition process, most patients emphasised the high quality of care and empathy provided by in-hospital services during their admission phase of care.
Several limitations of the study are noted.Complete exclusion of AIS body region one (head/neck) limited the number of eligible participants.Service provider perspectives were not fully explored as only a single participant from this group was nominated, which reinforced patient perceptions regarding lack of coordination of post-discharge care.The sample size limited the ability to explore emerging concepts seen in smaller patient subgroups, including perceptions regarding cultural responsiveness.A larger study would provide the opportunity to explore additional emerging themes more thoroughly.The study was limited by sample size through its focus on adult patients managed at Waikato Hospital (where most major trauma patients are managed), which may not refl ect the wider, less severely injured patients in the MTS population.Nevertheless, saturation occurred for the key themes described in this study, and patients felt very strongly that these should be disseminated widely with a view to promoting system improvements.Due to the inclusion criteria, the difference in experience between patients managed by anatomically-oriented surgical services in comparison with the dedicated Trauma Service at Waikato Hospital was not assessed.Along with improvement of specifi c services such as psychological counselling, it is likely that more widespread adoption of the continuation of care model used by the Waikato Trauma Service could improve consistency across all discharging services in the delivery of information and clinical care in the transition to the community.The continuation of care model has been reported to improve patient outcomes by coordinating timely access to appropriate care through improved coordination and communication between multidisciplinary staff which can be overseen by trauma coordinators.Length of hospital stay may also be reduced through timely discharge and communication with onward support services.Furthermore, length of time spent in more costly higher dependency settings may be reduced through timely transfer of care. 17 Most patients expected a single point for communication and advocacy; a person or a service who would take responsibility for meeting needs, although there were mixed reports as to which service provider should hold responsibility of this.General practitioners were generally not thought of as fi rst points of contact and while some patients stated the cost of GP consultations was more than they could afford, most patients expected ongoing assessment by treating staff from the hospital.Patients often reported ongoing health concerns but had no knowledge of who to report it to and whether they should; they expressed apprehension when needing to report symptoms previously raised with medical staff, leaving patients with perceived uncertain medical diagnoses.While not uncommon, 18 the impact of suboptimal handovers at hospital discharge on the patient experience and potentially avoidable hospital readmissions 19 warrants further investigation to ensure system level improvement occurs such as the use of ISBAR-introduction, situation, background, assessment, recommendationto guide a clinical handover to primary care rather than the provision of a discharge summary, which may be perceived as an administrative process only.
Confi dence was lost with outpatient clinics as patients were promised regular engagement and, in some cases, failed to receive appointment bookings.The lack of staff continuity in follow-up clinics also contributed to this, as patients wanted review by staff familiar with their injuries.Bookings were felt to be made irrespective of the inconvenience this may cause with multiple appointments on multiple days; satellite clinics or virtual clinics appear not to be offered or explored but were suggested by patients to support follow-up care.Most patients perceived a sense of isolation and lack of psychosocial support, turning to their key support person for assistance.This caused anxiety for all patients, who felt that ongoing physical and emotional assessments should be an essential part of treatment for a patient with serious injury, including engagement with psychological or counselling services from the earliest reasonable point following admission.These issues were exacerbated when patients themselves were key support person for other more seriously injured family members.
The key support person was crucial to the patient and their recovery, which is a common fi nding. 20With defi ciencies perceived in counselling assistance from in-hospital and post-discharge service providers, the key support person would often be the only avenue for patients to receive emotional care.Additionally, the key support person became the only link to a social network system, travel means and fi nancial support.Most patients were concerned about the burden transferred to their key support person and chose to be interviewed with their key support person in attendance; it became evident that the patients relied upon the key support person for recall of events.Without recording events, recollection of much of the recovery was vague for some patients due to an intensive care stay, analgesia, and the turmoil surrounding an admission with an acute injury.Immense gratitude was expressed regarding support from key support people during the hospital stay and post discharge care.The altruism of all participants was evident through the concern expressed for other patients who may not have the care of a key support person, with patients describing the central role of the key support person in orchestrating discharge supports and coordinating appointments.
Surviving a traumatic event resulting in serious injury is a time of chaos and confusion for patients and their key support people.Inadequate communication from staff during the in-hospital phase about what to expect following discharge, especially links to community health and social services, adds to this predicament significantly.Once patients and their key support people adjust to the initial impact of the traumatic event, further adjustments are required to manage the ongoing effects of the event such as the physical and emotional concerns and fi nancial pressures.Key support people are the single largest factor in facilitating patients' recovery from serious injury yet are left signifi cantly unsupported.
In summary, this study identifi ed several possible areas for improvement to service delivery following serious injury, specifi cally: 1. the review of service provider communication and service delivery processes and practices in co-design with former patients and key support people, particularly in relation to information sharing and discharge planning; 2. the establishment of trauma navigators (specifi c trauma discharge planners), for patients not admitted under a trauma service, to assist with the provision of more holistic, integrated care;