Ensuring that the outcome domains proposed for use in burns research are relevant to adult burn patients: a systematic review of qualitative research evidence
- Burns & Trauma Vol. 8, Issue 1, (2020)
- 作者机构：
1. Institute of Applied Health Research, University of Birmingham
2. The Scar Free Foundation Centre for Burns Research
3. University Hospitals Birmingham NHS Foundation Trust
4. School of Life & Health Sciences, Aston University
- 作者简介：
- 基金信息：
DOI：10.1093/burnst/tkaa030
CLC：Published：2020，
Published Online：1 November 2020，
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Jonathan Mathers, Naiem Moiemen, Amy Bamford, Fay Gardiner, Joanne Tarver, Ensuring that the outcome domains proposed for use in burns research are relevant to adult burn patients: a systematic review of qualitative research evidence, Burns & Trauma, Volume 8, 2020, tkaa030, https://doi.org/10.1093/burnst/tkaa030
Jonathan Mathers, Naiem Moiemen, Amy Bamford, Fay Gardiner, Joanne Tarver, Ensuring that the outcome domains proposed for use in burns research are relevant to adult burn patients: a systematic review of qualitative research evidence, Burns & Trauma, Volume 8, 2020, tkaa030, https://doi.org/10.1093/burnst/tkaa030 DOI：
摘要
Abstract
BackgroundThere have been several attempts to define core outcome domains for use in research focused on adult burns. Some have been based in expert opinion
whilst others have used primary qualitative research to understand patients’ perspectives on outcomes. To date there has not been a systematic review of qualitative research in burns to identify a comprehensive list of patient-centred outcome domains. We therefore conducted a systematic review of qualitative research studies in adult burns.MethodsWe searched multiple databases for English-language
peer-reviewed
qualitative research papers. We used search strategies devised using the SPIDER tool for qualitative synthesis. Our review utilized an iterative three-step approach: (1) outcome-focused coding; (2) development of descriptive accounts of outcome-relevant issues; and (3) revisiting studies and the broader theoretical literature in order to frame the review findings.ResultsForty-one articles were included. We categorized papers according to their primary focus. The category with the most papers was adaptation to life following burn injury (n = 13). We defined 19 outcome domains across the 41 articles: (1) sense of self; (2) emotional and psychological morbidity; (3) sensory; (4) scarring and scar characteristics; (5) impact on relationships; (6) mobility and range of joint motion; (7) work; (8) activities of daily living and self-care; (9) treatment burden; (10) engagement in activities; (11) wound healing and infection; (12) other physical manifestations; (13) financial impact; (14) impact on spouses and family members; (15) analgesia and side effects; (16) cognitive skills; (17) length of hospital stay; (18) access to healthcare; and (19) speech and communication. We suggest that sense of self is a core concern for patients that
to date
has not been clearly conceptualized in the burns outcome domain literature.ConclusionsThis outcome domain framework identifies domains that are not covered in previous attempts to outline core outcome domains for adult burn research. It does so with reference to existing theoretical perspectives from the sociology and psychology of medicine. We propose that this framework can be used as a basis to ensure that outcome assessment is patient-centred. Sense of self requires further consideration as a core outcome domain.
关键词
Keywords
Outcome domainsAdult burnsQualitative researchSystematic review
references
1.Pereira C, Murphy K, Herndon D. Outcome measures in burn care. Is mortality dead? Burns. 2004;30:761–71.
2.Falder S, Browne A, Edgar D, Staples E, Fong J, Rea S, et al. . Core outcomes for adult burn survivors: a clinical overview. Burns. 2009;35:618–41.
3.Simons M, Price N, Kimble R, Tyack Z. Patient experiences of burn scars in adults and children and development of a health-related quality of life conceptual model: a qualitative study. Burns. 2016;42:620–32.
4.Kool MB, Geenen R, Egberts MR, Wanders H, Van Loey NE. Patients' perspectives on quality of life after burn. Burns. 2017;43:747–56.
5.Jones LL, Calvert M, Moiemen N, Deeks JJ, Bishop J, Kinghorn P, et al. . Outcomes important to burns patients during scar management and how they compare to the concepts captured in burn-specific patient reported outcome measures. Burns. 2017;43:1682–92.
6.Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet. 2001;358:483–8.
7.Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol. 2012. https://doi.org/10.1186/1471-2288-12-181.
8.Evans D. Database searches for qualitative research. J Med Libr Assoc. 2002;90:290–3.
9.Shaw RL, Booth A, Sutton AJ, Miller T, Smith JA, Young B, et al. . Finding qualitative research: an evaluation of search strategies. BMC Med Res Methodol. 2004;4:5. https://doi.org/10.1186/1471-2288-4-5.
10.Cooke A, Smith D, Booth A. Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qual Health Res. 2012;22:1435–43.
11.Barbour RS. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ. 2001;322:1115–7.
12.Garside R. Should we appraise the quality of qualitative research reports for systematic reviews, and if so, how? Innovation (Abingdon). 2014;27:67–79.
13.Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. 2009. https://doi.org/10.1186/1471-2288-9-59.
14.Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008. https://doi.org/10.1186/1471-2288-8-45.
15.Abrams TE, Ogletree RJ, Ratnapradipa D, Neumeister MW. Adult survivors' lived experience of burns and post-burn health: a qualitative analysis. Burns. 2016;42:152–62.
16.Ciofi-Silva CL, Rossi LA, Dantas RS, Costa CS, Echevarria-Guanilo ME, Echevarria-Guanilo ME, et al. The life impact of burns: the perspective from burn persons in Brazil during their rehabilitation phase. Disability & Rehabilitation. 2010;32:431–7.
17.Dahl O, Wickman M, Wengstrom Y. Adapting to life after burn injury-reflections on care. Journal of Burn Care & Research. 2012;33:595–605.
18.Kornhaber R, Wilson A, Abu-Qamar MZ, McLean L. Coming to terms with it all: adult burn survivors' 'lived experience' of acknowledgement and acceptance during rehabilitation. Burns. 2014;40:589–97.
19.Moi AL, Gjengedal E. Life after burn injury: striving for regained freedom. Qual Health Res. 2008;18:1621–30.
20.Lau U, van Niekerk A. Restorying the self: an exploration of young burn survivors' narratives of resilience. Qual Health Res. 2011;21:1165–81.
21.Macleod R, Shepherd L, Thompson AR. Posttraumatic stress symptomatology and appearance distress following burn injury: an interpretative phenomenological analysis. Health Psychol. 2016;35:1197–204.
22.Moi AL, Vindenes HA, Gjengedal E. The experience of life after burn injury: a new bodily awareness. J Adv Nursi. 2008;64:278–86.
23.Ren Z, Chang WC, Zhou Q, Wang Y, Wang H, Hu D. Recovery of lost face of burn patients, perceived changes, and coping strategies in the rehabilitation stage. Burns. 2015;41:1855–61.
24.Williams NR, Davey M, Klock-Powell K. Rising from the ashes: stories of recovery, adaptation and resiliency in burn survivors. Soc Work Health Care. 2003;36:53–77.
25.Zamanzadeh V, Valizadeh L, Lotfi M, Salehi F. Preserving self-concept in the burn survivors: a qualitative study. Indian J Palliat Care. 2015;21:182–91.
26.Zhai JX, Liu XH, Wu J, Jiang H. What does posttraumatic growth mean to Chinese burn patients: a phenomenological study. J Burn Care Res. 2010;31:433–40.
27.Johnson RA, Taggart SB, Gullick JG. Emerging from the trauma bubble: redefining 'normal' after burn injury. Burns. 2016;42:1223–32.
28.Badger K, Royse D. Adult burn Survivors' views of peer support: a qualitative study. Soc Work Health Care. 2010;49:299–313.
29.Barnett BS, Mulenga M, Kiser MM, Charles AG. Qualitative analysis of a psychological supportive counseling group for burn survivors and families in Malawi. Burns. 2017;43:602–7.
30.Kornhaber R, Wilson A, Abu-Qamar M, McLean L, Vandervord J. Inpatient peer support for adult burn survivors-a valuable resource: a phenomenological analysis of the Australian experience. Burns. 2015;41:110–7.
31.Davis T, Gorgens K, Shriberg J, Godleski M, Meyer L. Making meaning in a burn peer support group: qualitative analysis of attendee interviews. J Burn Care Res. 2014;35:416–25.
32.Burnett LN, Carr E, Tapp D, Raffin Bouchal S, Horch JD, Biernaskie J et al. Patient experiences living with split thickness skin grafts. Burns. 2014;40:1097–1105.
33.Martin C, Bonas S, Shepherd L, Hedges E. The experience of scar management for adults with burns: an interpretative phenomenological analysis. Burns. 2016;42:1311–22.
34.Song C, Oh H. Burn patients' experience of peripherally inserted central catheter insertion: analysis of focus group interviews from a south Korean burn center. Burns. 2016;42:1439–44.
35.Gullick JG, Taggart SB, Johnston RA, Ko N. The trauma bubble: patient and family experience of serious burn injury. J Burn Care Res. 2014;35:e413–27.
36.Hunter TA, Medved MI, Hiebert-Murphy D, Brockmeier J, Sareen J, Thakrar S et al. Put on your face to face the world': Women's narratives of burn injury. Burns. 2013;39:1588–98.
37.Jones BA, Buchanan H, Harcourt D. The experiences of older adults living with an appearance altering burn injury: an exploratory qualitative study. J Health Psychol. 2017;22:364–74.
38.Khoshnami MS, Mohammadi E, Rasi HA, Khankeh HR, Arshi M. Conceptual model of acid attacks based on survivor's experiences: lessons from a qualitative exploration. Burns. 2017;43:608–18.
39.Rahzani K, Taleghani F, Nikbakht Nasrabadi A. Disfiguring burns and the experienced reactions in Iran: consequences and strategies--a qualitative study. Burns. 2009;35:875–81.
40.Thakrar S, Hunter TA, Medved MI, Hiebert-Murphy D, Brockmeier J, Sareen J et al. Men, fire, and burns: stories of fighting, healing, and emotions. Burns. 2015;41:1664–73.
41.Dunpath T, Chetty V, Van Der Reyden D. The experience of acute burns of the hand - patients perspectives. Disabil Rehabil. 2015;37:892–8.
42.Norouzi K, Taghinejad H, Mohammadi F, Mohammadi E, Suhrabi Z. What is missed in self-immolated patients' care?: a grounded theory study. J Clin Nurs. 2012;21:3418–28.
43.Connell K, Coates R, Wood F. Burn injuries lead to Behavioral changes that impact engagement in sexual and social activities in females. Sex Disabil. 2015;33:75–91.
44.Moi AL, Gjengedal E. The lived experience of relationships after major burn injury. J Clin Nurs. 2014;23:2323–31.
45.Giordano MS. The lived experience of social media by Young adult burn survivors. Am J Nurs. 2016;116:24–32.
46.Martin L, Byrnes M, McGarry S, Rea S, Wood F. Social challenges of visible scarring after severe burn: a qualitative analysis. Burns. 2017;43:76–83.
47.Pérez Boluda MT, Morales Asencio JM, Carrera Vela A, García Mayor S, León Campos A, López Leiva I, et al. . The dynamic experience of pain in burn patients: A phenomenological study. Burns. 2016;42:1097–104.
48.Tengvall O, Wickman M, Wengstrom Y. Memories of pain after burn injury-the Patient's experience. J Burn Care Res. 2010;31:319–27.
49.Yuxiang L, Lingjun Z, Lu T, Mengjie L, Xing M, Fengping S, et al. . Burn patients' experience of pain management: a qualitative study. Burns. 2012;38:180–6.
50.Mackey SP, Diba R, McKeown D, Wallace C, Booth S, Gilbert PM, et al. Return to work after burns: a qualitative research study. Burns. 2009;35:338–42.
51.Nguyen NT, Lorrain M, Pognon-Hanna JN, Elfassy C, Calva V, de Oliveira A, et al. Barriers and facilitators to work reintegration and burn survivors' perspectives on educating work colleagues. Burns. 2016;42:1477–86.
52.Oster C, Kildal M, Ekselius L. Return to work after burn injury: burn-injured Individuals' perception of barriers and facilitators. J Burn Care Res. 2010;31:540–50.
53.Rossi LA, Costa MCS, Dantas RS, Ciofi-Silva CL, Lopes LM. Cultural meaning of quality of life: perspectives of Brazilian burn patients. Disabil Rehabil. 2009;31:712–9.
54.Michael K. Colitis. London:Routledge, 1992.
55.Morse JM, O'Brien B. Preserving self: from victim, to patient, to disabled person. J Adv Nurs. 1995;21:886–96.
56.Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Ill. 1983;5.
57.Charmaz K. The body, identity, and self: adapting to impairment. Sociol Quart. 1995;36:657–80.
58.Charmaz K. From the sick role to stories of the self: Understanding the self in illness. In R. D. Ashmore & R. A. Contrada (Eds.), Self and identity, Vol. 2: Interdisciplinary explorations in physical health. New York: Oxford University Press, 1999, pp. 209–39.
59.Charmaz K. Discovering chronic illness - using grounded theory. Soc Sci Med. 1990;30:1161–72.
60.Morse JM. Responding to threats to integrity of self. Adv Nurs Sci. 1997;19:21–36.
61.Stanton AL, Revenson TA, Tennen H. Health psychology: psychological adjustment to chronic disease. Annu Rev Psychol. 2007;58:565–92.
62.Helgeson VS, Zajdel M. Adjusting to chronic health conditions. Annu Rev Psychol. 2017;68:545–71.
63.Bakas T, McLennon SM, Carpenter JS, Buelow JM, Otte JL, Hanna KM et al. Systematic review of health-related quality of life models. Health Qual Life Outcomes. 2012. https://doi.org/10.1186/1477-7525-10-134.
64.Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA. 1995;273:59–65.
65.Charmaz K. The self as habit: the reconstruction of self in chronic illness. Otjr-Occup Partici H. 2002;22:31s–41.
66.Klinge K, Chamberlain DJ, Redden M, King L. Psychological adjustments made by postburn injury patients: an integrative literature review. J Adv Nurs. 2009;65:2274–92.
67.Fauerbach JA, Lezotte D, Hills RA, Cromes GF, Kowalske K, de Lateur BJ et al. Burden of burn: a norm-based inquiry into the influence of burn size and distress on recovery of physical and psychosocial function. J Burn Care Rehabil. 2005;26:21–32.
68.Fauerbach JA, McKibben J, Bienvenu OJ, Magyar-Russell G, Smith MT, Holavanahalli R et al. Psychological distress after major burn injury. Psychosom Med. 2007;69:473–82.
69.Corry N, Pruzinsky T, Rumsey N. Quality of life and psychosocial adjustment to burn injury: social functioning, body image, and health policy perspectives. Int Rev Psychiatry. 2009;21:539–48.
70.Attoe C, Pounds-Cornish E. Psychosocial adjustment following burns: an integrative literature review. Burns. 2015;41:1375–84.
71.Bosmans MW, Hofland HW, De Jong AE, Van Loey NE. Coping with burns: the role of coping self-efficacy in the recovery from traumatic stress following burn injuries. J Behav Med. 2015;38:642–51.
72.de Ridder D, Geenen R, Kuijer R, van Middendorp H. Psychological adjustment to chronic disease. Lancet 2008;372:246–55.
73.de Ridder D, Schreurs K. Developing interventions for chronically ill patients: is coping a helpful concept? Clini Psychol Rev. 2001;21:205–40.
74.Gorst SY, Williamson B, Wilding P, Harman NL JPH. Incorporating patients' perspectives into the initial stages of core outcome set development: a rapid review of qualitative studies of type 2 diabetes. BMJ Open Diabetes Res Care. 2019. http://dx.doi.org/10.1136/bmjdrc-2018-000615.
75.Young A, Brookes S, Rumsey N, Blazeby J. Agreement on what to measure in randomised controlled trials in burn care: study protocol for the development of a core outcome set. BMJ Open. 2017. https://doi.org/10.1136/bmjopen-2017-017267.
76.Dekker J, de Groot V. Psychological adjustment to chronic disease and rehabilitation - an exploration. Disabil Rehabil. 2018;40:116–20.
77.Ambrosio L, Senosiain Garcia JM, Riverol Fernandez M, Anaut Bravo S, Diaz De Cerio Ayesa S, Ursua Sesma ME, et al. . Living with chronic illness in adults: a concept analysis. J Clinl Nurs. 2015;24:2357–67.
78.Ambrosio L, Portillo MC. Tools to assess living with a chronic illness: a systematic review. Enferm Clin. 2018. https://doi.org/10.1016/j.enfcli.2018.04.003.
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