there and listen to everyone moaning, groaning and screamingâ¦and I lie there ... always used to ask me what my pain levels were between 1 and 10⦠and with ...
The experience of injury and hospitalisation for adult burns patients and their carers. 1. Sue Taggart, Clinical Nurse Consultant (CNC) Burns Support, Concord Repatriation General Hospital (CRGH) 2. Natalie Ko, CNC Vascular, CRGH 3. Rae Ann Johnson, Transitional Nurse Practitioner, Burns Unit, CRGH 4. Clinical Associate Professor Janice Gullick, CNC, Cardiology, CRGH, Faculty of Nursing and Midwifery - University of Sydney 5. Associate Professor Sandra West, Faculty of Nursing and Midwifery - University of Sydney
Introduction
Preliminary Findings
There is a dearth of qualitative literature on the experience of burn injury and hospitalisation. The aim of this research project was to gain an understanding of the lived experience of burns and skin loss for patients and carers from injury to the post discharge period. This collaborative understanding enabled clinicians to identify those experiences which had greatest meaning for the participants. The knowledge gained will provide the foundation to improve the patient and carers’ journey through changes that may impact on access to care, multidisciplinary team processes, communication pathways, transition and continuity of care throughout the journey.
The experience of being a person with a burns or skin loss injury is shaped by an experience of trauma that was described as both physical and psychological. The experience of carers is also shaped by the trauma of their loved one. There were a number of dimensions to the trauma experienced, and these comprised reliving the injury, dread of the day-to-day routine, the trauma of a changed body, and the trauma of returning to pre-burn life.
Method Participants were provided with research study information and written consent was obtained prior to discharge. Heideggerian Hermeneutic Phenomenology was used to identify and interpret phenomena that were identified as common experiences for patients and their carers from the time of injury, throughout the hospital journey and beyond discharge. Heidegger was a German existential philosopher who developed a theory and practice of interpretation of experience, that considers the way we live our life within our world and share common meanings. Hermeneutics is the theory and practice of interpretation of written records, (for example, interview transcriptions). The term Hermeneutics comes from Hermes, the Greek god, whose task was to communicate messages from the gods to ordinary mortals. The Sample • 10 adult burns and skin loss patients admitted to Concord Hospital, and 10 carers. • Patients ranged in age from 21 - 49 / Male (8) Female (2) and this is reflective of the burns population at Concord Hospital. • Carers ranged in age from 22 - 56 / Male (0) Female (10) • Length of stay for participants ranged from 3 days - 64 days • Total Body Surface Area 3% - 60%
Fig 1. Face-to-face interviews in the Burns Unit
The Interviews and data collection • Researchers received training in semi-structured, conversational style interviews which were audiotaped and transcribed verbatim. • The interviews were either conducted face-to-face or by ground line phone connection using a speakerphone, depending on participant preference (fig. 1). The interviews were conducted between 1 and 5 weeks post discharge. • Transcript data was managed using NVIVO 8 software. The information was sorted into themes which were identified as common experiences of the burn injury and hospital journey. • The qualitative data from participants was then analysed utilizing Heideggerian Hermeneutic Phenomenology.
Reliving the injury The injury was relived through nightmares and through flashbacks that could be triggered by physically painful experiences. For example, 42 year old Greg* sustained a facial chemical burn and shrapnel injury from pressurised concrete spray. After an incorrect dose of eye drops were administered, he explained, “I was lying there with these burning eyes and the vision of the accident started happening. It was like someone had turned the tele on and showed me the accident over and over and I couldn’t turn it off…” 21 year old Sally* sustained a partial-thickness hot oil burn to her face and hand. After only a three day hospital stay she related how, “I went back to work for two weeks and at one stage I didn’t sleep for four days and I was having really bad nightmares and I still am… it really shook me up” Dread of the day-to-day routine People with burn injuries were traumatised by the painful routines of therapy experienced by themselves and by others. 48 year old Craig* was hospitalised following a chemical and steam burn to 30% of his face, arms and upper torso. He described the dread of his daily therapy, “ …it was a fairly emotional experience to start your day….knowing food was coming and I had to eat…and to get dressings done...I’d lie there and listen to everyone moaning, groaning and screaming…and I lie there in a bed sweating, waiting and I couldn’t think of anything else…” Kay*, 28 year old partner of Richard* who sustained a 60% flame burn was traumatised by his pain and felt powerless to comfort him. Crying, she relived the experience… “when Richard* was in pain, that’s the hardest for me, when I can’t do anything to help him.…you want to be there to help him ‘cause it was a really stressful time for him”. The trauma of a changed body People were traumatised by the loss of their known body and the permanent visibility of the disfigurement. Greg* revealed “I looked in the mirror… and on the end of my shoulders was this thing like a Star Wars movie. It was disgusting and I just freaked.., my head blew up all the more so as the night went on I became uglier and uglier. Like it was like nothing I’d ever seen… the next morning this angel nurse came and she grabbed the curtain, swung it open and goes “Hi Deary” and I never cry but I burst into tears, hid underneath the blanket. I said ‘shut the curtain, shut the curtain, I’m so embarrassed’ …it was just a really traumatic experience and - everyone always used to ask me what my pain levels were between 1 and 10… and with traumatic levels I do that same scale where 1 is a holiday and 10 is a nightmare. I probably had some high ‘8’s and ‘9’s…. Being by myself the whole night to try and think “this is what I’m going to look like for the rest of my life” Family were also traumatised by the changed body of their loved one. 22 year old Tony* sustained a 30% flame burn to his face, hands and upper body. His mother Joanne* relates, “We saw his wounds the day before we went home….it took everything I had not to cry ‘cause I hadn’t seen my child like this and then “whamo!”…and then we had to touch it. It just was horrific…to me it’s like the scales on a crocodile.”
The trauma of returning to pre-burn life The ‘pre-burn’ lives of the participants were centred within work and family roles, which were disrupted by the suddenness of the burn or skin loss injury. Sally* was traumatised as she was only given a certificate for a week off work after a work-related burn to her face and hands. “I was okay the first night but the second night I just totally freaked out and I was just laying in bed awake all night thinking about work, and how am I going to get back to work, and it really freaked me out way more than I should have been.” 43 year old Maggie* went from working full-time which she loved, to being a full time carer for partner Craig*. “I’m starting to go nuts because his limitations have limited me, so I don’t tend to go out and do what I want to do”. Level of trauma appears unrelated to degree of injury The size of the burn (percent of TBSA) in this sample, was not proportional to the severity of emotional trauma. Sally* who sustained a 5% TBSA burn, describes, “I am having anxiety attacks…I find it hard to get to sleep…having lots of nightmares…I wish someone said, ‘we might just book you into see somebody because you might be fine, you may not’…”
Discussion This is the first qualitative study to reveal trauma as the major dimension that shapes the experience of hospitalisation and recovery for people with burn and skin loss injury and their carers. A number of quantitative studies have highlighted aspects of psychological distress after a burn injury (Fauerbach et al, 2007, Patterson 2000, Difede 2002). For example, a heightened prevalence of post-traumatic distress disorder, anxiety, depression and substance and alcohol abuse is evident in this population (Van Loey and Van Son 2003, Patterson et al 1993). Our findings suggest a gap in the provision of emotional and psychological support in a major referral burns centre. Psychological support is required regardless of the severity of the burn injury, and may assist in adjustment to changes in the body, and in challenges to family and work roles. This new knowledge will inform alternative approaches to initial management, ongoing management by the multi-disciplinary team, and support in preparation for discharge. We recommend that psychological support be integrated into the routine care for burn patients and their carers. References Difede JA, Ptacek JT, Roberts J, Barocas D, Rives W, Apfeldorf W, and Yurt R. 2002, Acute Stress Disorder After Burn Injury: A Predictor of Posttraumatic Stress Disorder?, Psychosomatic Medicine, Vol. 64, pp. 826-834. Fauerbach JA, McKibben J, Bienvenu OJ, Magyar-Russell G, Smith MT, Holavanahalli R, Patterson DR, Wiechman DA, Blakeney P and Lezotte D. 2007, Psychological distress after major burn injury, Psychosomatic Medicine, Vol. 69, pp. 473-482. Patterson DR, Everett JJ, Bombardier CH, Questad KA, Lee VK, and Marvin JA, 1993, Psychological effects of severe burns injuries. Psychological Bulletin, Vol. 113, pp. 362378. Patterson DR, Ptacek JT, Cromes F, Fauerbach JA, and Engrav L. 2000, Describing and predicting distress and satisfaction with life for burn survivors. Journal of Burn Care and Rehabilitation, Vol. 21, no. 6, pp. 490-498. Van Loey N, Van Son M. 2003, Psychopathology and psychological problems in patients with burns scars. American Journal of Clinical Dermatology, Vol. 4, pp. 245-272. Acknowledgements: This research project was funded by the University of Sydney, Faculty of Nursing, and a CRGH TAB Nursing Scholarship. Support in kind from the Nursing Executive of Concord Repatriation General Hospital is also gratefully acknowledged. * Patients names are pseudonyms. AVS 57392
