ORIGINAL ARTICLE
The lived experience of relationships after major burn injury Asgjerd L Moi and Eva Gjengedal
Aims and objectives. To explore and describe the meaning of relationships after major burn injury. Background. A major burn injury may represent a threat to preburn appearance and level of functioning. Social resources and interaction are considered important for minimising the negative impacts on life after burn through all phases of care and rehabilitation. Yet, the subjective experiences of relating to others after burns have not been extensively explored. Design. The study was performed by using a phenomenological approach. Methods. A purposive sample (n = 14) of patients who had experienced major burns were interviewed in average 14 (5–35) months postinjury. The interviews were analysed by the phenomenological method of Giorgi. Results. The essence of the experience of relationships was constituted by other people re-anchoring the burn-injured persons to preburn life, being confirming of the new self, as well as being sensitive, competent and safeguarding with respect to actual and potential problems and harms. New bodily limitations demanded assistive others. Moreover, a worry about the overall burden on close family was typical. The supportive actions from others were mostly described as positive, but could also be experienced as challenging, and sometimes even unwanted and interfering with the struggle for regained freedom. Conclusions. Across variation, an increased awareness of the meaning of mutual interdependence was typical. Supportive relationships with family, friends and health professionals were important for the return to society, preburn activities and a meaningful life. Relevance to clinical practice. A perspective that values the significance of social support from family, friends, health professionals and others who are important for the burn-injured person, and that does not underestimate challenges that may be involved, is recommended during all phases of burn care. Health professionals should also acknowledge the importance of relationships when developing structured educational programmes and organising peer support.
What does this paper contribute to the wider global clinical community?
• Support from family, friends,
•
•
health professionals and significant others is essential for burninjured persons during all phases of burn care and rehabilitation. A clinical perspective that values the significance of support and at the same time does not underestimate challenges that may be involved should be implemented to prevent patient isolation, as well as caregiver exhaustion. Health professionals should acknowledge the importance of relationships when developing structured educational programmes and organising peer support.
Key words: burns, care, family, rehabilitation, social support Accepted for publication: 18 October 2013
Authors: Asgjerd Litlere´ Moi, PhD, CCRN, Associate Professor, Department of Nursing, Faculty of Health and Social Sciences, Bergen University College, Bergen; Eva Gjengedal, PhD, CCRN, Professor, Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331, doi: 10.1111/jocn.12514
Correspondence: Asgjerd L Moi, Associate Professor, Department of Nursing, Faculty of Health and Social Sciences, Bergen University College, Møllendalsveien 6, N-5009 Bergen, Norway. Telephone: +47 55587211. E-mail: [email protected]
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Introduction A major burn injury has the potential of seriously changing people’s lives. The horror of the accident, the burden of illness and treatment while hospitalised and the demanding postdischarge rehabilitation phase are all threats to patient’s long-term physical and psychosocial well-being (Van Loey et al. 2003, Esselman et al. 2006, Moi et al. 2006, Moi & Gjengedal 2008, Ter Smitten et al. 2011). Social support, as resources provided by other persons (Cohen & Syme 1985), seems to be one of the most important dimensions contributing significantly to patient health and quality of life (Badger et al. 2011). Thus, studies describing what relationships in a broad sense mean to the patients from accident through rehabilitation may give valuable insight that could add to the development of improved burn care.
Background Social support may influence on the well-being and outcome of burn patients throughout acute care and rehabilitation. During hospitalisation, the presence of family has been reported to improve patient coping and increase satisfaction with care (Dahl et al. 2012), and one study even indicated a positive association between burn patient survival and the presence of family or friends during intensive care (Muangman et al. 2005). In the late phase of hospitalisation, patients with adequate support, in terms of family or significant others with the ability to provide appropriate physical care, seem to be much more likely to be discharged to home than patients without such support (Farrell et al. 2010). Moreover, social support has been associated with better quality of life (Anzarut et al. 2005), and burn patients living alone or being unmarried have been found to have significantly poorer self-perceived health and quality of life than those cohabiting or being married, indicating that lack of social support from close family impacts negatively on patient outcomes (Patterson et al. 2000, Kildal et al. 2002, Moi et al. 2006, Moi & Nilsen 2012). Several studies also demonstrate that burn patients may experience lack of appropriate follow-up from the local healthcare system (Moi et al. 2008, Oster et al. 2010, Dahl et al. 2012), leaving family members with significant support responsibilities of both emotional and instrumental character (Moi et al. 2008). During rehabilitation, social support from family, friends and healthcare providers seems to facilitate burn-injured persons’ return to work (Oster et al. 2010).
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More than 20 years ago, burn patient social support was observed to be associated with improved body image, greater self-esteem and less depression (Orr et al. 1989), findings that are in line with more recent reports of significant associations between social comfort and body esteem (Lawrence et al. 2004) and between perceived social support and optimistic self-believes or post-traumatic growth (Wallis et al. 2006, Rosenbach & Renneberg 2008). Consistently, it was recently reported that 88% and 65% of adult burn survivors rated support from family and burn team members, respectively, as very important for their recovery (Sproul et al. 2009). This study is based on the data from interviews conducted in 2005 and 2006 as part of a larger study, where the overall aim was to describe and to obtain a comprehensive understanding of quality of life after burn injury as experienced by burn-injured persons (Moi & Gjengedal 2008, Moi et al. 2008). At that time, we found that burn patient reflections around quality of life meant accepting the unchangeable and changing the changeable, through a continuous struggle for personal goals, independence, as well as relationships (Moi & Gjengedal 2008, Moi et al. 2008). In this study, the meaning of relationships after burn injury has been further explored, aiming at providing new insight that may be of value for the development of burn care.
Methods In this study, a phenomenological approach based on Husserl and Merleau-Ponty’s phenomenology and the phenomenological method of Giorgi were chosen (Giorgi 1985, 2009). According to the chosen view, phenomenology is descriptive, and it seeks the most invariant meanings for a context through the attitude of phenomenological reduction (Giorgi 1987, 1997). In this study, phenomenological validity was maintained by being open to the participants’ stories and fully acknowledging the experience of those burn-injured without questioning the existence of what was told. To support this, preconceptions held by the researcher, who was an experienced intensive care nurse, including scientific information, were written down before the interviews started in order to be more self-aware and open during the research process.
Participants A purposive sample of participants were recruited from the time schedule of the burn outpatient clinic at the national
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
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Lived experience of relationships after burns
burn centre in Norway (Moi & Gjengedal 2008). The patients included had an injury that met the American Burn Association’s criteria for a major burn that has the potential of threatening the functioning, appearance or life of the patient (American Burn Association 1990). The participants were 18 years of age or more at time of injury. Those having severe mental and cognitive disorder overshadowing the burn injury experience or problems with language that could potentially make it difficult to express their stories and take part in an interview were excluded. To identify the essence across different contexts, participants of both sexes who differed in age and that had experienced burns of varying cause and severity were recruited (Table 1).
minimum, so that the chronology of the participants’ story could facilitate recall. Probes and deepening questions were used to explore given aspects perceived as valuable and important to their meaning of life. The interviews were performed 5–35 months postburn. The interviewing was stopped at a point when descriptions were rich and little new information related to the aim of the study was obtained. All interviews were recorded on a MiniDisc (Sony Records, Tokyo, Japan) and later transcribed verbatim and prepared for analysis. The principal investigator performed all transcriptions. Before data analysis, all the interviews were made anonymous to allow for confidentiality.
Data analysis Data collection An invitation to participate in the study was mailed to eligible burn patients together with information on an upcoming clinical appointment. Of the 14 participants included, nine were interviewed once, four twice and one-three times, resulting in a total of 20 interviews. A request for another interview appointment was made when important aspects of the participants’ life after burn were not yet fully covered. The total interview time per participant was an average of two hours and 10 minutes, varying from 55 minutes–4 hours and 20 minutes. A field note describing the context, perceived atmosphere and nonverbal communication was written immediately after each interview. The interviews took place over a period of 14 months. All but one interview were conducted at a remotely located room at the hospital, and most interviews on the same day of their clinical appointment. One participant was interviewed at home. The principal investigator (ALM) performed all interviews. The participants were asked to tell their life stories from the time of the accident to the time of the interview. Questions and interruptions were kept at a Table 1 Patient characteristics
Demographics Age (years) Sex (M/F) Living alone Unemployed Burn characteristics TBSA burn (%) FTI (%) Number of operations Length of hospital stay (days)
The interviews were analysed according to the phenomenological method of Giorgi (1985). First, all interviews were read to obtain a sense of the whole. Notes based on the first reading of each interview were written down. The next step was to read each interview in detail, focusing on important aspects in the lives of the participants from the injury to the time of interview, and make slashes in the text each time an intuiting change of meaning occurred. Relevant meaning units were then organised by topic. The insight into the meaning units was then expressed more directly, by transforming the participants’ own wording and with the help of imaginative variation. Then, an individual structure of meaning was synthesised for each participant. Lastly, a general structure of the experience of life after the burn accident was identified across convergences and divergences in all interviews. The qualitative data analysis software NVIVO (QSR International, Southport, UK) was used for processing the voluminous data. Moreover, the second author read all interviews and took part in the interpretation and presentation of the findings.
Ethical approvals and considerations
n
%
11/3 4 7
79/21 29 50
Mean (SD)
Range
462 (133)
19–74
326 268 42 506
75–620 30–620 0–14 17–118
(182) (187) (40) (324)
TBSA, total body surface area; FTI, full-thickness injury.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
The study was approved by the Regional Committee for Medical and Health Research Ethics of Western Norway and registered at the Norwegian Social Science Data Service. All patients signed a letter of informed consent. As the distribution of power is uneven in an interview setting, respect for every patient zone of privacy was sought achieved.
Results The essence of the experience of relationships after burn injury was constituted by other people re-anchoring the burn-injured persons to preburn life, being confirming of
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the new self, as well as being sensitive, competent and safeguarding with respect to actual and potential problems and harms. New bodily limitations demanded assistive others. Moreover, the burn injury experience made the awareness of human interdependence more prominent, including both the supportive and challenging aspects of relationships.
And he (my son) fears that I will show up at school. He doesn’t want me to come there. He doesn’t want anyone to see me.
In addition, lack of sympathy and understanding could also be experienced when scars were hidden behind clothes: Perhaps I think too much about it, but nobody can see that I am sick, why I am in need occupational rehabilitation. So, it bothers
Anchoring and confirming others Most often the accident and treatment took time away from memory. This gave the participants a sense of a disrupted life story, and other people were valuable for filling in the gaps. Family members were often an important content of their first factual memory, and they could also add significant meaning to the hospital environment by offering pictures, letters and cards, or as in one patient, the possibility to listen to familiar prayers on tape. These things were often described as important for their will to go on, their well-being or sleep. Like one participant stated: I think those pictures that hung over my bed of my grandchild and me sitting close together, and the letter they read from my daughter when they had time, were the first significant pieces of help.
Later, thoughts of home, family and previous life continued to motivate the struggle for progress. After the injury, the stares from other people, because of altered behaviour or appearance, increased the feeling of loss of familiarity with their bodies, and it felt unpleasant to show their injured bodies in public. Stares from adults could be interpreted as ill-mannered and unpolite, but could be met with humour or with a sudden impulse to say something to humiliate the person who stared. With time, feelings could change: It is about accepting oneself as you are, and when you do so, you break the tension and barrier which can occur based on how they (strangers) think when they see you.
Partners and close family supported the participants to accept their new bodies by confirming that their love was unaffected by the injury. Confirmation did not mean that their relatives had to think they looked nice. Instead, a mutual understanding developed and they found an agreement: My son is very fond of swimming, and he often asks me to go with him to the swimming pool, and I say I am hesitant because I don’t think I look very well. So he understands, and he agrees with me too.
On the other hand, embarrassment from family resulting in a lack of understanding on how to handle the new situation could induce constant sorrow and a feeling of being let down by relatives:
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me, I don’t know what people think.
Across variation in contexts, visibility of the scars and altered functioning, a need for confirmation according to the participants’ new feeling of self, in particular from close family, friends and colleagues, was essential for their wellbeing and acceptance of their changed bodies.
Sensitive and competent others The injured bodies typically visualised their story from the burn accident, the operations and the healing. In this respect, being cared for and being together with persons capable of making an intuitive grasp of their experiences, as wordless understanding, were appreciated. The feeling of being cared for was often synonymous with not having to explain, like this participant who found understanding when talking to an experienced burn care nurse, who was sensitive and had the ability to interpret his bodily expressions and the impact of his injury: But I think some of the conversations I had with one of the nurses, in particular, released some of my thoughts, you know. The person sitting there had lots of experience with burn injuries and lots of knowledge about it, and then you needn’t be a psychologist for understanding the patient’s problem.
The participants also described their bodies as more present, with low tolerance for warm and cold weather, pain and itch. Together, professionals and family assisted them in a variety of ways to increase comfort, for example, by administering proper medication, allowing a break from or adjusting the pressure garments, helping with moistening of the skin, giving massage or allowing for rest. After discharge, finding a well-informed, experienced other to help them in taking care of the skin, preventing infections and scars, was essential and not always easy. Sometimes the competent other was found at home, like this participant who trusted his sister: But then my sister started to do the changing of dressings. She had access to dressings, so she came every day when I was home, twice a day [..…]. So I was actually better off at home.
Other times, proper assistance was sought among professionals, like this participant who had never thought he © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
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would ever need a psychologist, but asked for a consultation before leaving the hospital: This is perhaps what I missed most, a kind of mandatory ….., even though you are not obliged to, anyhow, an offer [of a psychologist] ought to be presented very early, when you begin to regain consciousness again. I believe people are in need of that.
Lack of competence and help was met with disappointment, anger or resignation depending on the expectations related to the relationship. It could also result in help-seeking outside the public healthcare system. Hence, wordless understanding, adequate advice and help with skin care, proper symptom management, as well as time and talks with family and professionals, were important aspects in burn care.
Safeguarding others The life changes imposed by the burn injury gave a new feeling of insecurity, in particular when being immobilised and feeling dysfunctional. The need for feeling connected to others, both health professionals and family, was described as paramount during acute care. Later, the feeling of insecurity could be triggered by transfer from special care to step-down units or home, like this participant expressing how much anxiety the transfer to a smaller institution evoked: Then, I remember the days before I left and the two-to-three first days after arrival at [name of the rehabilitation clinic]……, it was actually very unpleasant. I was scared; I was very scared of leaving the security I had experienced here.
After discharge, feelings of insecurity could also be evoked when crossing streets or when visiting new places and wondering how to escape in case of fire or how to reach a toilet in a timely manner. In such situations, lack of understanding from lay persons and professionals, both in public and private places, were experienced as disappointing and anger provoking. Moreover, financial and work-related worries evoked insecurity, sometimes starting already from the first conscious moments at hospital and continuing through rehabilitation: I didn’t have the right job at the time I got injured this way
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and much appreciated. On the other hand, the process of obtaining insurance money or social security money was perceived as very bureaucratic and demanding. Lack of information and support in this phase was felt strenuous, and when others could help, this led to deep-felt gratitude: My wife, she is sitting and filling in papers, taking phone calls and doing a lot of work for every little thing I am going to do.
For the participants, insecurity was a prominent feeling, and safeguarding others therefore became important for minimising the bodily, material and economic losses imposed on them by the burn.
Assistive others The burn injury meant long-term reductions in bodily activity, and to be completely passive, powerless and helpless during the first phase of hospitalisation was a significant negative experience. Later, bodily limitations meant loss of spare time activities, loss of spontaneous meetings with friends and sometimes inability to do sports or dancing. To feel that life was passing by without being able to participate, and not knowing what future bodily capacity would be, was very hard: When my friend comes, and suddenly disappears again,…… I can get this feeling, “Oh, you are so handicapped!”
Consistently, regaining the capacity to perform preburn activities was experienced as a large victory. Other people often served as gatekeepers to these ‘first-time’ experiences by buffering, compensating, helping and motivating to return to their preburn life: My brother helped me into the driver’s seat, and I drove all the way home!
On the other hand, receiving help could also be experienced as very difficult, complicating and threatening longlasting close relationships. The powerlessness and feeling of helplessness could make the burn-injured bad-tempered and disappointed, feelings that could become even stronger if family or friends did not respect their need for control and autonomy:
[welder]. I needed sick leave for so long. Not all doctors under-
I prefer, if I can choose, that it is me who is asking you for help. If
stood, but luckily some did, so it turned out very well.
you ask me, then I wonder whether you think: He, poor thing, he
Private economical support from family or from fundraising in their home community could allow for family visits while hospitalised and add to income, so that their earlier lifestyle could be secured. Flexible options from employers with regard to the return to work were helpful © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
looks rather helpless; or: I can see that you are struggling. Those are no good feelings, thinking that another person is seeing me as helpless. Because I am really not; only in some situations.
Health professionals were considered to be important for the preparation of the family for the time to come:
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AL Moi and E Gjengedal My son, he came very often and visited me at the rehabilitation clinic, and I can see how much easier it is for him to help me (…).
Some participants were reluctant to ask for help, feeling a strong need to manage on their own. A feeling of being a burden on their loved ones was often combined with the recognition of the fact that family members, children and spouses also could suffer long-term effects and being in need of expert help: My girl-friend has experienced problems for a long time. She has struggled tremendously. It isn’t just easy for her to get help, almost impossible.
Returning into family life meant gradually to regain roles and trust in the family. This was not always easy. Strains imposed on partnerships because of the injury were experienced, but more typically, help and support from family resulted in a deep-felt gratitude and a feeling of strengthened relationships: Take my wife as an example, she sat for two months beside a man in coma [me] who did not say a single word; sat there and looked on him for two months here. To have women to sit like that […].
Thus, for a variable period of time, the burn-injured needed assistance from others. In this process, both the availability of help and the ability of the burn-injured to accept assistance, together with mutual goals and respect, were experienced as crucial.
Discussion This study is based on interviews exploring what constitutes quality of life after burn injury (Moi & Gjengedal 2008, Moi et al. 2008). The descriptions presented are not independent pieces, but moments of a given whole, where the presence of family, friends and health professionals emerged as essential to the meanings of burn injury reconvalescence. This is in accordance with phenomenological thinking of where the three dimensions of self, others and the world belong together (Zahavi 2005). Moreover, the burn injury experience made the awareness of interdependence more prominent, including both the supportive and challenging aspects of human relationships. The need for re-anchoring and confirming others through the acute and rehabilitation phases of burn injury was experienced as important. This is consistent with earlier reports demonstrating an association between social support and higher hope and feelings of self-esteem in burn-injured adolescents (Barnum et al. 1998). In critically ill patients, social support has been described to promote inner strength,
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in which next of kin were essential, by being there and giving a will to live (Alpers et al. 2012). This process was further promoted by healthcare personnel who offered extra time for talks and caring. The classical work on stigma by Goffman (1963) describes that even though stigma as a part of a persons’ social identity is known to be shaped by society, the society also puts responsibility on the stigmatised persons to ease the tension that might occur in social settings (Goffman 1963). The participants of this study described that a part of life after burn injury was to be prepared for stares and unpleasant comments and questions when being in public. This demonstrates a struggle for social comfort which previously has been described as more important for body esteem than the injury severity per se (Lawrence et al. 2004). In another study, social comfort, social support and body esteem were found to explain 60% of the variance in self-reported depression (Lawrence et al. 2006). Hence, the findings of this study revealed that confirmation by others as an identity across variations that facilitated comfort in social situations. The bodily presence revealed a need for other people who could ‘read’ their bodily expressions, being sensitive and competent. The founder of phenomenology, Husserl, stated that it is through a bodily ‘holding sway’ we can understand one another (Husserl 1970). Merleau-Ponty also stated that it is through our bodies we can understand other people (Merleau-Ponty 2002). In this study, this was revealed through the appreciation of professionals or family that was able to make an intuitive grasp of the situation of the participant. Consistently, it has been reported that nurses in burn care experience a positive association between increased perceived skills in advising patients on physical rehabilitation and years working with burns (Reeve et al. 2009). After discharge, the healthcare personnel’s knowledge on burn wound care and symptom management was often perceived as inadequate (Oster et al. 2010), putting more demand on own coping abilities and family. In a meta-synthesis, caring in nursing has been described as a context-specific interpersonal process that includes both expert nursing practice and interpersonal sensitivity (Finfgeld-Connett 2008). The participants experienced that impaired bodily functioning led to insecurity, allowing access to trusted and safeguarding others to be much appreciated. Feeling safe has earlier been identified as an overwhelming need among critically ill patients (Hupcey 2000). Worries on consequences for private economy and return to work were also prominent, and flexible solutions offered by employers and contact with work colleagues were much appreciated. Earlier studies have indicated that social reintegration through employment is of great importance for the subjective wellbeing of burn patients (Munster et al. 1996, Kildal et al. © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
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2002, Litlere Moi et al. 2003, Dyster-Aas et al. 2004, 2007, Moi et al. 2006, Oster et al. 2010). This suggests that personal worth, in terms of esteem and value, is most effectively strengthened through activities in public (Cobb 1976). Even though the level of social security differs between countries, perceived material and economic worry may be significant for burn patients (Farrell et al. 2010). For the participants of this study, safeguarding others therefore became important for minimising the bodily, material and economic losses imposed on them by the burn. Several studies in the burn literature have documented better health and quality of life in burn patients cohabiting or being married (Kildal et al. 2002, Moi et al. 2007), indicating a positive effect of a dyadic relationship of care and love. Furthermore, whereas lack of family support has been associated with psychosocial problems in both acute burn care and rehabilitation, burn rehabilitation problems have been suggested to be more related to lack of family support than healthcare support (Park et al. 2008). Earlier reports have demonstrated that partners and children of burn-injured persons may experience negative impacts on their lives, including more chores, anxiety and concerns, reduced social life and own low mood (Phillips et al. 2007). In this study, some participants were reluctant to ask for help, feeling a strong need to manage on their own and not be a burden on their loved ones. Barriers in being able may also lead to impatience, anger, resignation and grief after burn injury (Moi et al. 2008). Thus, both giving and receiving help may be challenging. The recipient must recognise the need for support and be willing to accept assistance, whereas the providers must recognise the need for support and be willing to offer assistance (Finfgeld-Connett 2005). In this perspective, systematic support, information, education and discharge planning may help burn patients and their families to be better prepared for the changes in interdependence and practical challenges that will come (American Burn Association/American College of Surgeons 2007). In addition, the importance of social support provided by nurses and other members of the treatment team should not be underestimated (Sproul et al. 2009), especially in situations where family members live at a long distance from the hospital or have duties that prevent them from being present. Nurses may then fill in and give emotional and informational support when family are absent (Hupcey 2001).
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tive to achieve the best possible health and quality of life in persons after burn. For both the burn-injured persons and their significant others, the burn injury made the awareness of human interdependence more prominent, including both the supportive and challenging aspects of relationships.
Relevance to clinical practice The meaning of relationships after major burns was in this study mainly perceived to be very supportive, but sometimes also challenging. A perspective that values the significance of social support from family, friends, health professionals and others who are important for the burninjured person, and that does not underestimate challenges that may be involved, should be implemented during all phases of burn care to prevent patient isolation, as well as caregiver exhaustion (American Burn Association/American College of Surgeons 2007). Health professionals should also acknowledge the importance of relationships when developing structured educational programmes and organising peer support. Structural programmes for increasing the mutual beneficial partnership between patient, family and nurses are documented or under development in the ICU population (Mitchell et al. 2009, Hansen et al. 2012). Further development of nursing intervention programmes, by organising care, communication and support based on the experience of patient and families, is also needed.
Acknowledgements The authors wish to thank the burn survivors who participated in this study and so generously shared their experiences with us. This study was supported by the Research Council of Norway and The Western Norway Regional Health Authority.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Conclusion This study revealed the importance of support from family, friends and professionals through all stages of burn care. Social interaction and social resources seem to be impera© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
Conflict of interest The authors state that they have no such conflict to disclose.
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Kildal M, Andersson G & Gerdin B (2002) Health status in Swedish burn patients. Assessment utilising three variants of the Burn Specific Health Scale. Burns 28, 639–645. Lawrence JW, Fauerbach JA, Heinberg L & Doctor M (2004) Visible vs hidden scars and their relation to body esteem. The Journal of Burn Care & Rehabilitation 25, 25–32. Lawrence JW, Fauerbach JA & Thombs BD (2006) Frequency and correlates of depression symptoms among longterm adult burn survivors. Rehabilitation Psychology 51, 306–313. Litlere Moi A, Wentzel-Larsen T, Salemark L & Hanestad B (2003) Validation of a Norwegian version of the Burn Specific Health Scale. Burns 29, 563–570; Errata in: Burns 29, 872–873. Merleau-Ponty M (2002) Phenomenology of Perception. Routledge, London. Mitchell M, Chaboyer W, Burmeister E & Foster M (2009) Positive effects of a nursing intervention on family-centered care in adult critical care. American Journal of Critical Care 18, 543–552. Moi AL & Gjengedal E (2008) Life after burn injury: striving for regained freedom. Qualitative Health Research 18, 1621–1630. Moi AL & Nilsen RM (2012) Pathways leading to self-perceived general health and overall quality of life in burned adults. Burns 38, 1157–1164. Moi AL, Wentzel-Larsen T, Salemark L, Wahl AK & Hanestad BR (2006) Impaired generic health status but perception of good quality of life in survivors of burn injury. The Journal of Trauma 61, 961–968. Moi AL, Wentzel-Larsen T, Salemark L & Hanestad BR (2007) Long-term risk factors for impaired burn-specific health and unemployment in patients with thermal injury. Burns 33, 37–45. Moi AL, Vindenes HA & Gjengedal E (2008) The experience of life after burn injury: a new bodily awareness. Journal of Advanced Nursing 64, 278–286. Muangman P, Sullivan SR, Wiechman S, Bauer G, Honari S, Heimbach DM, Engrav LH & Gibran NS (2005) Social support correlates with survival in patients with massive burn injury.
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Original article The Journal of Burn Care & Rehabilitation 26, 352–356. Munster AM, Fauerbach JA & Lawrence J (1996) Development and utilization of a psychometric instrument for measuring quality of life in burn patients, 1976 to 1996. Acta Chirurgiae Plasticae 38, 128–131. Orr DA, Reznikoff M & Smith GM (1989) Body image, self-esteem, and depression in burn-injured adolescents and young adults. The Journal of Burn Care & Rehabilitation 10, 454–461. Oster C, Kildal M & Ekselius L (2010) Return to work after burn injury: burn-injured individuals’ perception of barriers and facilitators. Journal of Burn Care & Research 31, 540–550. Park SY, Choi KA, Jang YC & Oh SJ (2008) The risk factors of psychosocial problems for burn patients. Burns 34, 24–31.
Lived experience of relationships after burns Patterson DR, Ptacek JT, Cromes F, Fauerbach JA & Engrav L (2000) The 2000 Clinical Research Award. Describing and predicting distress and satisfaction with life for burn survivors. The Journal of Burn Care & Rehabilitation 21, 490–498. Phillips C, Fussell A & Rumsey N (2007) Considerations for psychosocial support following burn injury – a family perspective. Burns 33, 986–994. Reeve J, James F & McNeill R (2009) Providing psychosocial and physical rehabilitation advice for patients with burns. Journal of Advanced Nursing 65, 1039–1043. Rosenbach C & Renneberg B (2008) Positive change after severe burn injuries. Journal of Burn Care & Research 29, 638–643. Sproul JL, Malloy S & Abriam-Yago K (2009) Perceived sources of support of
adult burn survivors. Journal of Burn Care & Research 30, 975–982. Ter Smitten MH, de Graaf R & Van Loey NE (2011) Prevalence and co-morbidity of psychiatric disorders 1–4 years after burn. Burns 37, 753–761. Van Loey NE, Maas CJ, Faber AW & Taal LA (2003) Predictors of chronic posttraumatic stress symptoms following burn injury: results of a longitudinal study. Journal of Traumatic Stress 16, 361–369. Wallis H, Renneberg B, Ripper S, Germann G, Wind G & Jester A (2006) Emotional distress and psychosocial resources in patients recovering from severe burn injury. Journal of Burn Care & Research 27, 734– 741. Zahavi D (2005) Subjectivity and selfhood: investigating the first-person perspective. MIT Press, Cambridge, MA.
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© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
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The lived experience of relationships after major burn injury Asgjerd L Moi and Eva Gjengedal
Aims and objectives. To explore and describe the meaning of relationships after major burn injury. Background. A major burn injury may represent a threat to preburn appearance and level of functioning. Social resources and interaction are considered important for minimising the negative impacts on life after burn through all phases of care and rehabilitation. Yet, the subjective experiences of relating to others after burns have not been extensively explored. Design. The study was performed by using a phenomenological approach. Methods. A purposive sample (n = 14) of patients who had experienced major burns were interviewed in average 14 (5–35) months postinjury. The interviews were analysed by the phenomenological method of Giorgi. Results. The essence of the experience of relationships was constituted by other people re-anchoring the burn-injured persons to preburn life, being confirming of the new self, as well as being sensitive, competent and safeguarding with respect to actual and potential problems and harms. New bodily limitations demanded assistive others. Moreover, a worry about the overall burden on close family was typical. The supportive actions from others were mostly described as positive, but could also be experienced as challenging, and sometimes even unwanted and interfering with the struggle for regained freedom. Conclusions. Across variation, an increased awareness of the meaning of mutual interdependence was typical. Supportive relationships with family, friends and health professionals were important for the return to society, preburn activities and a meaningful life. Relevance to clinical practice. A perspective that values the significance of social support from family, friends, health professionals and others who are important for the burn-injured person, and that does not underestimate challenges that may be involved, is recommended during all phases of burn care. Health professionals should also acknowledge the importance of relationships when developing structured educational programmes and organising peer support.
What does this paper contribute to the wider global clinical community?
• Support from family, friends,
•
•
health professionals and significant others is essential for burninjured persons during all phases of burn care and rehabilitation. A clinical perspective that values the significance of support and at the same time does not underestimate challenges that may be involved should be implemented to prevent patient isolation, as well as caregiver exhaustion. Health professionals should acknowledge the importance of relationships when developing structured educational programmes and organising peer support.
Key words: burns, care, family, rehabilitation, social support Accepted for publication: 18 October 2013
Authors: Asgjerd Litlere´ Moi, PhD, CCRN, Associate Professor, Department of Nursing, Faculty of Health and Social Sciences, Bergen University College, Bergen; Eva Gjengedal, PhD, CCRN, Professor, Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331, doi: 10.1111/jocn.12514
Correspondence: Asgjerd L Moi, Associate Professor, Department of Nursing, Faculty of Health and Social Sciences, Bergen University College, Møllendalsveien 6, N-5009 Bergen, Norway. Telephone: +47 55587211. E-mail: [email protected]
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Introduction A major burn injury has the potential of seriously changing people’s lives. The horror of the accident, the burden of illness and treatment while hospitalised and the demanding postdischarge rehabilitation phase are all threats to patient’s long-term physical and psychosocial well-being (Van Loey et al. 2003, Esselman et al. 2006, Moi et al. 2006, Moi & Gjengedal 2008, Ter Smitten et al. 2011). Social support, as resources provided by other persons (Cohen & Syme 1985), seems to be one of the most important dimensions contributing significantly to patient health and quality of life (Badger et al. 2011). Thus, studies describing what relationships in a broad sense mean to the patients from accident through rehabilitation may give valuable insight that could add to the development of improved burn care.
Background Social support may influence on the well-being and outcome of burn patients throughout acute care and rehabilitation. During hospitalisation, the presence of family has been reported to improve patient coping and increase satisfaction with care (Dahl et al. 2012), and one study even indicated a positive association between burn patient survival and the presence of family or friends during intensive care (Muangman et al. 2005). In the late phase of hospitalisation, patients with adequate support, in terms of family or significant others with the ability to provide appropriate physical care, seem to be much more likely to be discharged to home than patients without such support (Farrell et al. 2010). Moreover, social support has been associated with better quality of life (Anzarut et al. 2005), and burn patients living alone or being unmarried have been found to have significantly poorer self-perceived health and quality of life than those cohabiting or being married, indicating that lack of social support from close family impacts negatively on patient outcomes (Patterson et al. 2000, Kildal et al. 2002, Moi et al. 2006, Moi & Nilsen 2012). Several studies also demonstrate that burn patients may experience lack of appropriate follow-up from the local healthcare system (Moi et al. 2008, Oster et al. 2010, Dahl et al. 2012), leaving family members with significant support responsibilities of both emotional and instrumental character (Moi et al. 2008). During rehabilitation, social support from family, friends and healthcare providers seems to facilitate burn-injured persons’ return to work (Oster et al. 2010).
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More than 20 years ago, burn patient social support was observed to be associated with improved body image, greater self-esteem and less depression (Orr et al. 1989), findings that are in line with more recent reports of significant associations between social comfort and body esteem (Lawrence et al. 2004) and between perceived social support and optimistic self-believes or post-traumatic growth (Wallis et al. 2006, Rosenbach & Renneberg 2008). Consistently, it was recently reported that 88% and 65% of adult burn survivors rated support from family and burn team members, respectively, as very important for their recovery (Sproul et al. 2009). This study is based on the data from interviews conducted in 2005 and 2006 as part of a larger study, where the overall aim was to describe and to obtain a comprehensive understanding of quality of life after burn injury as experienced by burn-injured persons (Moi & Gjengedal 2008, Moi et al. 2008). At that time, we found that burn patient reflections around quality of life meant accepting the unchangeable and changing the changeable, through a continuous struggle for personal goals, independence, as well as relationships (Moi & Gjengedal 2008, Moi et al. 2008). In this study, the meaning of relationships after burn injury has been further explored, aiming at providing new insight that may be of value for the development of burn care.
Methods In this study, a phenomenological approach based on Husserl and Merleau-Ponty’s phenomenology and the phenomenological method of Giorgi were chosen (Giorgi 1985, 2009). According to the chosen view, phenomenology is descriptive, and it seeks the most invariant meanings for a context through the attitude of phenomenological reduction (Giorgi 1987, 1997). In this study, phenomenological validity was maintained by being open to the participants’ stories and fully acknowledging the experience of those burn-injured without questioning the existence of what was told. To support this, preconceptions held by the researcher, who was an experienced intensive care nurse, including scientific information, were written down before the interviews started in order to be more self-aware and open during the research process.
Participants A purposive sample of participants were recruited from the time schedule of the burn outpatient clinic at the national
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
Original article
Lived experience of relationships after burns
burn centre in Norway (Moi & Gjengedal 2008). The patients included had an injury that met the American Burn Association’s criteria for a major burn that has the potential of threatening the functioning, appearance or life of the patient (American Burn Association 1990). The participants were 18 years of age or more at time of injury. Those having severe mental and cognitive disorder overshadowing the burn injury experience or problems with language that could potentially make it difficult to express their stories and take part in an interview were excluded. To identify the essence across different contexts, participants of both sexes who differed in age and that had experienced burns of varying cause and severity were recruited (Table 1).
minimum, so that the chronology of the participants’ story could facilitate recall. Probes and deepening questions were used to explore given aspects perceived as valuable and important to their meaning of life. The interviews were performed 5–35 months postburn. The interviewing was stopped at a point when descriptions were rich and little new information related to the aim of the study was obtained. All interviews were recorded on a MiniDisc (Sony Records, Tokyo, Japan) and later transcribed verbatim and prepared for analysis. The principal investigator performed all transcriptions. Before data analysis, all the interviews were made anonymous to allow for confidentiality.
Data analysis Data collection An invitation to participate in the study was mailed to eligible burn patients together with information on an upcoming clinical appointment. Of the 14 participants included, nine were interviewed once, four twice and one-three times, resulting in a total of 20 interviews. A request for another interview appointment was made when important aspects of the participants’ life after burn were not yet fully covered. The total interview time per participant was an average of two hours and 10 minutes, varying from 55 minutes–4 hours and 20 minutes. A field note describing the context, perceived atmosphere and nonverbal communication was written immediately after each interview. The interviews took place over a period of 14 months. All but one interview were conducted at a remotely located room at the hospital, and most interviews on the same day of their clinical appointment. One participant was interviewed at home. The principal investigator (ALM) performed all interviews. The participants were asked to tell their life stories from the time of the accident to the time of the interview. Questions and interruptions were kept at a Table 1 Patient characteristics
Demographics Age (years) Sex (M/F) Living alone Unemployed Burn characteristics TBSA burn (%) FTI (%) Number of operations Length of hospital stay (days)
The interviews were analysed according to the phenomenological method of Giorgi (1985). First, all interviews were read to obtain a sense of the whole. Notes based on the first reading of each interview were written down. The next step was to read each interview in detail, focusing on important aspects in the lives of the participants from the injury to the time of interview, and make slashes in the text each time an intuiting change of meaning occurred. Relevant meaning units were then organised by topic. The insight into the meaning units was then expressed more directly, by transforming the participants’ own wording and with the help of imaginative variation. Then, an individual structure of meaning was synthesised for each participant. Lastly, a general structure of the experience of life after the burn accident was identified across convergences and divergences in all interviews. The qualitative data analysis software NVIVO (QSR International, Southport, UK) was used for processing the voluminous data. Moreover, the second author read all interviews and took part in the interpretation and presentation of the findings.
Ethical approvals and considerations
n
%
11/3 4 7
79/21 29 50
Mean (SD)
Range
462 (133)
19–74
326 268 42 506
75–620 30–620 0–14 17–118
(182) (187) (40) (324)
TBSA, total body surface area; FTI, full-thickness injury.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
The study was approved by the Regional Committee for Medical and Health Research Ethics of Western Norway and registered at the Norwegian Social Science Data Service. All patients signed a letter of informed consent. As the distribution of power is uneven in an interview setting, respect for every patient zone of privacy was sought achieved.
Results The essence of the experience of relationships after burn injury was constituted by other people re-anchoring the burn-injured persons to preburn life, being confirming of
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the new self, as well as being sensitive, competent and safeguarding with respect to actual and potential problems and harms. New bodily limitations demanded assistive others. Moreover, the burn injury experience made the awareness of human interdependence more prominent, including both the supportive and challenging aspects of relationships.
And he (my son) fears that I will show up at school. He doesn’t want me to come there. He doesn’t want anyone to see me.
In addition, lack of sympathy and understanding could also be experienced when scars were hidden behind clothes: Perhaps I think too much about it, but nobody can see that I am sick, why I am in need occupational rehabilitation. So, it bothers
Anchoring and confirming others Most often the accident and treatment took time away from memory. This gave the participants a sense of a disrupted life story, and other people were valuable for filling in the gaps. Family members were often an important content of their first factual memory, and they could also add significant meaning to the hospital environment by offering pictures, letters and cards, or as in one patient, the possibility to listen to familiar prayers on tape. These things were often described as important for their will to go on, their well-being or sleep. Like one participant stated: I think those pictures that hung over my bed of my grandchild and me sitting close together, and the letter they read from my daughter when they had time, were the first significant pieces of help.
Later, thoughts of home, family and previous life continued to motivate the struggle for progress. After the injury, the stares from other people, because of altered behaviour or appearance, increased the feeling of loss of familiarity with their bodies, and it felt unpleasant to show their injured bodies in public. Stares from adults could be interpreted as ill-mannered and unpolite, but could be met with humour or with a sudden impulse to say something to humiliate the person who stared. With time, feelings could change: It is about accepting oneself as you are, and when you do so, you break the tension and barrier which can occur based on how they (strangers) think when they see you.
Partners and close family supported the participants to accept their new bodies by confirming that their love was unaffected by the injury. Confirmation did not mean that their relatives had to think they looked nice. Instead, a mutual understanding developed and they found an agreement: My son is very fond of swimming, and he often asks me to go with him to the swimming pool, and I say I am hesitant because I don’t think I look very well. So he understands, and he agrees with me too.
On the other hand, embarrassment from family resulting in a lack of understanding on how to handle the new situation could induce constant sorrow and a feeling of being let down by relatives:
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me, I don’t know what people think.
Across variation in contexts, visibility of the scars and altered functioning, a need for confirmation according to the participants’ new feeling of self, in particular from close family, friends and colleagues, was essential for their wellbeing and acceptance of their changed bodies.
Sensitive and competent others The injured bodies typically visualised their story from the burn accident, the operations and the healing. In this respect, being cared for and being together with persons capable of making an intuitive grasp of their experiences, as wordless understanding, were appreciated. The feeling of being cared for was often synonymous with not having to explain, like this participant who found understanding when talking to an experienced burn care nurse, who was sensitive and had the ability to interpret his bodily expressions and the impact of his injury: But I think some of the conversations I had with one of the nurses, in particular, released some of my thoughts, you know. The person sitting there had lots of experience with burn injuries and lots of knowledge about it, and then you needn’t be a psychologist for understanding the patient’s problem.
The participants also described their bodies as more present, with low tolerance for warm and cold weather, pain and itch. Together, professionals and family assisted them in a variety of ways to increase comfort, for example, by administering proper medication, allowing a break from or adjusting the pressure garments, helping with moistening of the skin, giving massage or allowing for rest. After discharge, finding a well-informed, experienced other to help them in taking care of the skin, preventing infections and scars, was essential and not always easy. Sometimes the competent other was found at home, like this participant who trusted his sister: But then my sister started to do the changing of dressings. She had access to dressings, so she came every day when I was home, twice a day [..…]. So I was actually better off at home.
Other times, proper assistance was sought among professionals, like this participant who had never thought he © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
Original article
would ever need a psychologist, but asked for a consultation before leaving the hospital: This is perhaps what I missed most, a kind of mandatory ….., even though you are not obliged to, anyhow, an offer [of a psychologist] ought to be presented very early, when you begin to regain consciousness again. I believe people are in need of that.
Lack of competence and help was met with disappointment, anger or resignation depending on the expectations related to the relationship. It could also result in help-seeking outside the public healthcare system. Hence, wordless understanding, adequate advice and help with skin care, proper symptom management, as well as time and talks with family and professionals, were important aspects in burn care.
Safeguarding others The life changes imposed by the burn injury gave a new feeling of insecurity, in particular when being immobilised and feeling dysfunctional. The need for feeling connected to others, both health professionals and family, was described as paramount during acute care. Later, the feeling of insecurity could be triggered by transfer from special care to step-down units or home, like this participant expressing how much anxiety the transfer to a smaller institution evoked: Then, I remember the days before I left and the two-to-three first days after arrival at [name of the rehabilitation clinic]……, it was actually very unpleasant. I was scared; I was very scared of leaving the security I had experienced here.
After discharge, feelings of insecurity could also be evoked when crossing streets or when visiting new places and wondering how to escape in case of fire or how to reach a toilet in a timely manner. In such situations, lack of understanding from lay persons and professionals, both in public and private places, were experienced as disappointing and anger provoking. Moreover, financial and work-related worries evoked insecurity, sometimes starting already from the first conscious moments at hospital and continuing through rehabilitation: I didn’t have the right job at the time I got injured this way
Lived experience of relationships after burns
and much appreciated. On the other hand, the process of obtaining insurance money or social security money was perceived as very bureaucratic and demanding. Lack of information and support in this phase was felt strenuous, and when others could help, this led to deep-felt gratitude: My wife, she is sitting and filling in papers, taking phone calls and doing a lot of work for every little thing I am going to do.
For the participants, insecurity was a prominent feeling, and safeguarding others therefore became important for minimising the bodily, material and economic losses imposed on them by the burn.
Assistive others The burn injury meant long-term reductions in bodily activity, and to be completely passive, powerless and helpless during the first phase of hospitalisation was a significant negative experience. Later, bodily limitations meant loss of spare time activities, loss of spontaneous meetings with friends and sometimes inability to do sports or dancing. To feel that life was passing by without being able to participate, and not knowing what future bodily capacity would be, was very hard: When my friend comes, and suddenly disappears again,…… I can get this feeling, “Oh, you are so handicapped!”
Consistently, regaining the capacity to perform preburn activities was experienced as a large victory. Other people often served as gatekeepers to these ‘first-time’ experiences by buffering, compensating, helping and motivating to return to their preburn life: My brother helped me into the driver’s seat, and I drove all the way home!
On the other hand, receiving help could also be experienced as very difficult, complicating and threatening longlasting close relationships. The powerlessness and feeling of helplessness could make the burn-injured bad-tempered and disappointed, feelings that could become even stronger if family or friends did not respect their need for control and autonomy:
[welder]. I needed sick leave for so long. Not all doctors under-
I prefer, if I can choose, that it is me who is asking you for help. If
stood, but luckily some did, so it turned out very well.
you ask me, then I wonder whether you think: He, poor thing, he
Private economical support from family or from fundraising in their home community could allow for family visits while hospitalised and add to income, so that their earlier lifestyle could be secured. Flexible options from employers with regard to the return to work were helpful © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
looks rather helpless; or: I can see that you are struggling. Those are no good feelings, thinking that another person is seeing me as helpless. Because I am really not; only in some situations.
Health professionals were considered to be important for the preparation of the family for the time to come:
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AL Moi and E Gjengedal My son, he came very often and visited me at the rehabilitation clinic, and I can see how much easier it is for him to help me (…).
Some participants were reluctant to ask for help, feeling a strong need to manage on their own. A feeling of being a burden on their loved ones was often combined with the recognition of the fact that family members, children and spouses also could suffer long-term effects and being in need of expert help: My girl-friend has experienced problems for a long time. She has struggled tremendously. It isn’t just easy for her to get help, almost impossible.
Returning into family life meant gradually to regain roles and trust in the family. This was not always easy. Strains imposed on partnerships because of the injury were experienced, but more typically, help and support from family resulted in a deep-felt gratitude and a feeling of strengthened relationships: Take my wife as an example, she sat for two months beside a man in coma [me] who did not say a single word; sat there and looked on him for two months here. To have women to sit like that […].
Thus, for a variable period of time, the burn-injured needed assistance from others. In this process, both the availability of help and the ability of the burn-injured to accept assistance, together with mutual goals and respect, were experienced as crucial.
Discussion This study is based on interviews exploring what constitutes quality of life after burn injury (Moi & Gjengedal 2008, Moi et al. 2008). The descriptions presented are not independent pieces, but moments of a given whole, where the presence of family, friends and health professionals emerged as essential to the meanings of burn injury reconvalescence. This is in accordance with phenomenological thinking of where the three dimensions of self, others and the world belong together (Zahavi 2005). Moreover, the burn injury experience made the awareness of interdependence more prominent, including both the supportive and challenging aspects of human relationships. The need for re-anchoring and confirming others through the acute and rehabilitation phases of burn injury was experienced as important. This is consistent with earlier reports demonstrating an association between social support and higher hope and feelings of self-esteem in burn-injured adolescents (Barnum et al. 1998). In critically ill patients, social support has been described to promote inner strength,
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in which next of kin were essential, by being there and giving a will to live (Alpers et al. 2012). This process was further promoted by healthcare personnel who offered extra time for talks and caring. The classical work on stigma by Goffman (1963) describes that even though stigma as a part of a persons’ social identity is known to be shaped by society, the society also puts responsibility on the stigmatised persons to ease the tension that might occur in social settings (Goffman 1963). The participants of this study described that a part of life after burn injury was to be prepared for stares and unpleasant comments and questions when being in public. This demonstrates a struggle for social comfort which previously has been described as more important for body esteem than the injury severity per se (Lawrence et al. 2004). In another study, social comfort, social support and body esteem were found to explain 60% of the variance in self-reported depression (Lawrence et al. 2006). Hence, the findings of this study revealed that confirmation by others as an identity across variations that facilitated comfort in social situations. The bodily presence revealed a need for other people who could ‘read’ their bodily expressions, being sensitive and competent. The founder of phenomenology, Husserl, stated that it is through a bodily ‘holding sway’ we can understand one another (Husserl 1970). Merleau-Ponty also stated that it is through our bodies we can understand other people (Merleau-Ponty 2002). In this study, this was revealed through the appreciation of professionals or family that was able to make an intuitive grasp of the situation of the participant. Consistently, it has been reported that nurses in burn care experience a positive association between increased perceived skills in advising patients on physical rehabilitation and years working with burns (Reeve et al. 2009). After discharge, the healthcare personnel’s knowledge on burn wound care and symptom management was often perceived as inadequate (Oster et al. 2010), putting more demand on own coping abilities and family. In a meta-synthesis, caring in nursing has been described as a context-specific interpersonal process that includes both expert nursing practice and interpersonal sensitivity (Finfgeld-Connett 2008). The participants experienced that impaired bodily functioning led to insecurity, allowing access to trusted and safeguarding others to be much appreciated. Feeling safe has earlier been identified as an overwhelming need among critically ill patients (Hupcey 2000). Worries on consequences for private economy and return to work were also prominent, and flexible solutions offered by employers and contact with work colleagues were much appreciated. Earlier studies have indicated that social reintegration through employment is of great importance for the subjective wellbeing of burn patients (Munster et al. 1996, Kildal et al. © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
Original article
2002, Litlere Moi et al. 2003, Dyster-Aas et al. 2004, 2007, Moi et al. 2006, Oster et al. 2010). This suggests that personal worth, in terms of esteem and value, is most effectively strengthened through activities in public (Cobb 1976). Even though the level of social security differs between countries, perceived material and economic worry may be significant for burn patients (Farrell et al. 2010). For the participants of this study, safeguarding others therefore became important for minimising the bodily, material and economic losses imposed on them by the burn. Several studies in the burn literature have documented better health and quality of life in burn patients cohabiting or being married (Kildal et al. 2002, Moi et al. 2007), indicating a positive effect of a dyadic relationship of care and love. Furthermore, whereas lack of family support has been associated with psychosocial problems in both acute burn care and rehabilitation, burn rehabilitation problems have been suggested to be more related to lack of family support than healthcare support (Park et al. 2008). Earlier reports have demonstrated that partners and children of burn-injured persons may experience negative impacts on their lives, including more chores, anxiety and concerns, reduced social life and own low mood (Phillips et al. 2007). In this study, some participants were reluctant to ask for help, feeling a strong need to manage on their own and not be a burden on their loved ones. Barriers in being able may also lead to impatience, anger, resignation and grief after burn injury (Moi et al. 2008). Thus, both giving and receiving help may be challenging. The recipient must recognise the need for support and be willing to accept assistance, whereas the providers must recognise the need for support and be willing to offer assistance (Finfgeld-Connett 2005). In this perspective, systematic support, information, education and discharge planning may help burn patients and their families to be better prepared for the changes in interdependence and practical challenges that will come (American Burn Association/American College of Surgeons 2007). In addition, the importance of social support provided by nurses and other members of the treatment team should not be underestimated (Sproul et al. 2009), especially in situations where family members live at a long distance from the hospital or have duties that prevent them from being present. Nurses may then fill in and give emotional and informational support when family are absent (Hupcey 2001).
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tive to achieve the best possible health and quality of life in persons after burn. For both the burn-injured persons and their significant others, the burn injury made the awareness of human interdependence more prominent, including both the supportive and challenging aspects of relationships.
Relevance to clinical practice The meaning of relationships after major burns was in this study mainly perceived to be very supportive, but sometimes also challenging. A perspective that values the significance of social support from family, friends, health professionals and others who are important for the burninjured person, and that does not underestimate challenges that may be involved, should be implemented during all phases of burn care to prevent patient isolation, as well as caregiver exhaustion (American Burn Association/American College of Surgeons 2007). Health professionals should also acknowledge the importance of relationships when developing structured educational programmes and organising peer support. Structural programmes for increasing the mutual beneficial partnership between patient, family and nurses are documented or under development in the ICU population (Mitchell et al. 2009, Hansen et al. 2012). Further development of nursing intervention programmes, by organising care, communication and support based on the experience of patient and families, is also needed.
Acknowledgements The authors wish to thank the burn survivors who participated in this study and so generously shared their experiences with us. This study was supported by the Research Council of Norway and The Western Norway Regional Health Authority.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Conclusion This study revealed the importance of support from family, friends and professionals through all stages of burn care. Social interaction and social resources seem to be impera© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2323–2331
Conflict of interest The authors state that they have no such conflict to disclose.
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