The experience of scar management for adults with burns: An interpretative phenomenological analysis

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ScienceDirect journal homepage: www.elsevier.com/locate/burns

The experience of scar management for adults with burns: An interpretative phenomenological analysis C. Martin a,*, S. Bonas a, L. Shepherd b, E. Hedges b a

University of Leicester, Clinical Psychology, 104 Regent Road, Leicester LE1 7LT, United Kingdom Nottingham University Hospitals NHS Trust, Burns Service, City Hospital Campus, Hucknall Road, Nottingham NG5 1PB, United Kingdom b

article info

abstract

Article history:

Burns can have both physical and psychological effects on individuals. Pressure garments and

Accepted 13 March 2016

silicone gels are used to improve the aesthetic appearance and functions of the skin, but these

Keywords:

ties. Interpretative phenomenological analysis (IPA) was used to explore participants’ experi-

treatments have been associated with various physical, emotional, sexual and social difficulBurn

ences of scar management. IPA examines individual experiences before comparing results

Scar management

across cases, and is suited to capture the different ways in which individuals experience a

Pressure garment

phenomena as well as cautiously looking at patterns across cases. Eight burn patients who had

Silicone gel

experienced scar management, including pressure garments, were interviewed. Two super-

Experience

ordinate themes were identified: Assimilation of Pressure Garment Identity, and Psychosocial

Qualitative

Functions of the Pressure Garments. The findings offered insight into the positive and negative experiences of scar management, describing the diverse personal and social functions of the pressure garments and how they became integrated into participants’ identities. By understanding the individual nature of these experiences, healthcare professionals can enhance support around these issues and potentially aid adherence to treatment. Further research with different demographic groups as well as for other burn treatments would be useful to develop and contextualise these findings. # 2016 Elsevier Ltd and ISBI. All rights reserved.

1.

Introduction

Each year across England and Wales, around 3000–4000 adults are admitted to specialist burn services [1], where they are subsequently faced with numerous physical, social and psychological challenges in and beyond hospitalisation. Once

healed, burn scarring can create difficulties with mobility, contractures, sensitivity and itching [2,3] and psychosocial difficulties may also arise as a result of physical changes to the skin. Socially, burn patients may experience staring and pointing by others [4] and the impact of looking different on interactions with others has been well documented [5,6]. Psychologically, burn patients may feel their bodies are

* Corresponding author. Tel.: +44 116 223 1639. E-mail address: [email protected] (C. Martin). Abbreviations: PG, pressure garment; IPA, interpretative phenomenological analysis; OT, occupational therapist; TBSA, total body surface area. http://dx.doi.org/10.1016/j.burns.2016.03.002 0305-4179/# 2016 Elsevier Ltd and ISBI. All rights reserved.

Please cite this article in press as: Martin C, et al. The experience of scar management for adults with burns: An interpretative phenomenological analysis. Burns (2016), http://dx.doi.org/10.1016/j.burns.2016.03.002

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shameful, distressing, unfamiliar, vulnerable and restricted and there is a significant amount of research exploring how burn patients experience and adjust to these bodily changes following injury [7–9]. There may also be deeper psychological issues surrounding burn scarring when considered from a psychodynamic perspective. Theoretically, skin may be considered as a boundary, which protects, unites and distinguishes an individual [10,11]. Bick’s [12] seminal paper described skin as the first containing object for the infant, providing both a concrete and metaphorical role as a container for the identity. Gilboa [10] argued that by breaching the skin, a burn can be experienced as an invasion, leading to feelings of disintegration and existential fear. Therefore, there may be existential issues that arise as a consequence of being burnt. Scar management to minimise any psychosocial impact and manage aesthetic and functional difficulties of scars is therefore important. In the first six months, scars are most metabolically active, before going through a process of maturation where they usually flatten and soften to some degree [13]. In 32–72% of burn patients, hypertrophic scars will develop [14], appearing as red, raised and hardened skin. Scars can take up to two years to mature [15] and it is vital to apply treatments within and often for the duration of this period. Although there is no universally effective method for preventing or managing abnormal scarring [16], there is evidence for the use of silicone gels [16,17] and some, often anecdotal, evidence that pressure garments (PGs) soften and flatten scars [18]. These treatments are usually prescribed for 23 h each day for up to two years to correspond with the time taken for scars to mature, although the research literature suggests that adherence to wearing PGs as prescribed can be limited [19,20]. This is because it may be presumed that there are challenges that patients experience that affect adherence. Indeed, it has been found that adherence to PGs may be influenced by a range of physical and psychosocial issues with the treatment, including perceived body temperature in the PGs [19], knowledge and understanding of treatment [21,22], social support [23] and skin problems such as tenderness, necrosis, rash and blisters [23]. One study in South Africa further demonstrated a disparity between 23 adult patients and 10 occupational therapists regarding the perceived severity and significance of these difficulties [23], which suggests a possible gap in awareness of health professionals in how patients experience treatment with PGs. Given the importance of PGs in scar management due to the need to preserve function and minimise psychosocial impact, alongside the potential challenges to treatment adherence due to the demands PGs place on patients (e.g. the number of hours per day and time period over which they are required [19,20]), it is surprising that there is a dearth of qualitative research exploring the experiences of scar management in adults following burns. Indeed, only two published papers could be found at the time of writing [24,25], neither of which were conducted in the UK. Firstly, Ripper et al. [24] conducted a qualitative study using content analysis with 21 participants recruited in Germany (13 male; mean age = 42 years). Exploring the problems and benefits associated with PGs, patients reported issues around sweating, numbness, discomfort and skin irritation. This study demonstrated some psychosocial

experiences of scar management. For example, patients feared and experienced negative reactions from others as a result of wearing PGs. In contrast, some patients felt the garments were protective, improved mobility, or were considered to be a ‘second skin’ [p. 661]. However, these concepts were not elaborated upon, limiting the scope for considering clinical implications. Although this paper described the impact of scar management, the explicit focus on the problems and benefits of PGs may have excluded insights into broader experiences of the treatment. Furthermore, the authors used content analysis to categorise these issues which may have been at the cost of understanding the experiential nature and lived experience of these problems. The second study by Connell et al. [25] was conducted in Australia and was specifically focused on sexual and social activities using a qualitative phenomenological approach. Five females were interviewed (mean age = 23 years). Patients indicated that PGs had a negative effect on their self-esteem and quality of life. The PGs were also felt to inhibit the women’s expression of femininity, due to the dissatisfying appearance of the garment and the inflexibility with clothing. Although these two studies provided some insight into specific dimensions of personal and social experiences, there remains a need to understand these within the broader context of scar management. Overall, the current body of literature on the lived experience of PGs is lacking and has only explored specific challenges associated with scar management and how these may impact on adherence to wearing the PGs. In addition, these studies are scarce and there remains a need to understand holistically patients’ experiences of scar management to inform how to give better support to patients who are asked to adhere to a difficult treatment regimen. Due to the dearth of qualitative research in this area, it was considered important to maintain a broad interest in the lived experience of burn patients. The current study therefore aimed to address this gap in the literature.

2.

Method

2.1.

Design

IPA was used due to its focus on phenomenology, idiography and hermeneutics. IPA is concerned with how individuals make sense of their experiences, and the subsequent interpretations of the researcher. This method is particularly useful for topics of research which are subjective, contextual and under-studied [26]. Using IPA offers insight into individual lived experience, and enables an understanding of the diverse ways in which people may experience a common phenomenon as well as considering any similarities across cases. A purposive sample of adults who were currently undergoing or had recently completed scar management was accessed through a UK burns service. Scar management typically commenced two to six weeks following a burn and all participants had been using PG(s) and, unless contraindicated, silicone gel. Although the study aimed for a homogenous sample with regards to scar management, not all factors could be controlled for due to the inherent variability in size, location

Please cite this article in press as: Martin C, et al. The experience of scar management for adults with burns: An interpretative phenomenological analysis. Burns (2016), http://dx.doi.org/10.1016/j.burns.2016.03.002

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Table 1 – Participant information. Participant

Gender

Anneka Caroline Ellie Graham Ian Jeremy Keith Marie

F F F M M M M F

a

Age (years)

TBSA

Burn depth

Scar management

Duration (months)

48 48 45 68 48 45 65 58

1% 14% 4% 2% 2% 1.5% 29% 1%

Mixed depth Mixed depth Mixed depth Full thickness Partial thickness Mixed depth Full thickness Partial thickness

Glove; gel and gel sheet Long-sleeved vest; gel Sleeve, body strap; bio-oil Sock; E45 Glove; E45 Glove, sleeve; E45 Glove, sleeve; gel and gel sheet Glove; gel sheet and E45

22 5 10 11a 19 30a 39a 6

Discharged at the time of interview.

and depth of burns and the consequential variability in treatment. In relation to the aims of the research, the priority for homogenous sampling was to recruit adult participants (over 18 years) with burns, who had been using at least a PG and a topical treatment for a minimum of one month; and were currently in treatment or within three years of discharge. Patients were not included if they had a cognitive impairment, a severe or enduring mental health problem, or were unable to speak sufficient English to be interviewed.

from 5 to 39 months (mean = 18 months). It was not feasible to control for all the variables related to patients’ burns and their scar management treatment as these were inherently unique and therefore diverse, which limited the homogeneity of the sample. Although the extent and location of burns varied, all participants were from White ethnic backgrounds and all used PGs and topical creams or gels for burns.

2.2.

Participants were informed that the purpose of the interview was to understand their own experience of scar management. A topic guide was developed from consultation between the authors, which include an occupational therapist and clinical psychologist at the burns unit, and an experienced researcher in IPA methodology. As, by nature, scar management is a lengthy and intensive process which lacks discrete stages to be explored, the topic guide remained relatively broad to avoid preconceptions of how patients may experience their treatment. The topic guide included questions on daily and longitudinal experiences of treatment, and the personal and social impact of treatment. The interview began with an open question (‘‘could you start by telling me about when you were first told about scar management?’’), before proceeding to explore areas related to the experience and impact of having treatment. Example questions included: ‘‘What does scar management mean to you?’’ ‘‘How, if at all, does scar management affect you?’’ and ‘‘What has it been like for you living with this treatment?’’ Taking an inductive approach to data collection, the interview was guided by the participants’ experiences, and clarifying prompts and questions were asked so as not to assume meaning, e.g. ‘‘could you give me an example?’’ or ‘‘what do you mean by that?’’ Face-to-face interviews were conducted by the first author at the patient’s home, place of work, or at the burns unit. Interviews were audio-recorded and ranged 35–100 min in duration (mean = 58 min).

Ethical approval

Approval was obtained from an external research ethics committee. Participants were provided with written information about the study and a consent form was signed. Participants were informed that they could withdraw consent and their data at any time up until their interviews had been transcribed as data were anonymised at that stage.

2.3.

Recruitment

Occupational therapists (OTs) identified potential participants from current/recent caseloads using the inclusion and exclusion criteria. Forty research invitations were posted to eligible participants between February and March 2014. An information sheet was enclosed which gave details about the study as well as postal, telephone and email options to respond. Participants were asked to express any interest within two weeks of receiving the letter. Eight participants opted in from the first batch which was considered adequate for a study using IPA [27,28] and recruitment ceased. Participants who opted in were contacted by telephone or email to answer any questions they had about the study, and to arrange a mutually convenient time and location for the interview (either home, work or at hospital).

2.4.

Participants

Eight participants were recruited in total (four male). The mean age was 53 years (range 45–68 years). Data on patients’ burn and scar management are presented in Table 1. All participants were from White ethnic backgrounds; seven were British and one South African. Five were married, two cohabited, and one was single. Six participants were in employment. The mean total body surface area (TBSA) was 7% (range 1–29%). Time since the burn ranged from 6 to 71 months (mean = 25 months), and time in treatment ranged

2.5.

2.6.

Data collection

Data analysis

Interview recordings were transcribed verbatim by the first author with the exclusion of personal data which were changed to protect participants’ identities. Pauses, emphasis and expressions of emotion were all retained during transcription. This process facilitated the initial stages of analysis by allowing immersion in the raw data.

Please cite this article in press as: Martin C, et al. The experience of scar management for adults with burns: An interpretative phenomenological analysis. Burns (2016), http://dx.doi.org/10.1016/j.burns.2016.03.002

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Analysis was guided by six stages, as described by Smith et al. [28]. The process began with one transcript, before being repeated for each individual transcript prior to exploring themes across cases. This involved (1) reading and re-reading the transcript, to become familiar with the data and to observe patterns or how different sections of the transcript may vary in terms of depth or detail. Initial exploratory notes (2) were then written throughout the transcript, offering ideas and questions about the way the account was constructed and potential meanings for the participant. This led to the development of emerging themes (3), by moving attention to interpretation and thematic grouping of the exploratory comments. Themes were then organised (4) by comparing and contrasting themes to create a coherent structure. This process was repeated for each case (5) before themes across cases were explored (6).

2.7.

Quality issues

As per guidelines for qualitative research [29], attention was given to issues of rigour, context and transparency. The analysis was conducted within a social constructionist framework, meaning the experience of scar management was considered to be socially constructed from the way in which participants made sense of and communicated their experiences. For example, the meaning they gave to their experiences was considered to be inherently influenced by their embedding in, and interactions with, the social, political and cultural context (such as current cultural discourses around medical treatments, body image and scarring). Information on participants’ demographics, burn and scar management were collated to situate the sample and to take into account the differences between each individual’s treatment (e.g. the location and visibility of the PG). During the analysis, the first author engaged in a process of bracketing, which is a fundamental principle to IPA. Although bracketing cannot be fully achieved as there is an inevitable influence of the expectations and experiences of the researcher, acknowledging these prior to and during the data analysis allowed potential biases to be considered and facilitated a critical and reflexive approach to analysis. A reflexive diary was maintained and themes were discussed with peers throughout the process of data collection and analysis. This provided an opportunity to reflect and gain feedback on the coherence, structure and interpretation of the data. All themes were supported with examples from across the transcripts.

3.

Results

Two superordinate themes were identified: Assimilation of PG Identity and Psychosocial Functions of the PGs. Although participants were asked about scar management more broadly, PGs dominated the focus of their experiences.

3.1.

Assimilation of PG Identity

The shift in identity towards one of a burn patient was a transition for all participants, and scar management contributed to this process. However, scar management posed further implications for other aspects of how participants constructed

their identities as men or women. Initially, participants often viewed PGs as separate entities to be worn, and they described trying to retain their usual roles and routines while faced with the challenges, or support, of their PGs (I’m Still Here). Through both habitual use and the physical and psychological benefits, the PGs became assimilated into their sense of self, their bodies and routines and participants described attachments to their PGs (Integration of a Second Skin).

3.2.

I’m Still Here

‘I’m Still Here’ described the diverse ways that scar management contributed to participants’ different identities; as men and women who variously perceived themselves to be strong, vulnerable, normal, independent or sexual beings. In trying to maintain a familiar sense of self, participants described how their PGs could either challenge them (by interfering in their interactions with others) or support them (e.g. to engage in their usual activities). Two participants indicated scar management was an assault on their identities. While trying to maintain her identity as a woman, a wife and a mother, Caroline described feeling submerged by her garment: ‘‘People didn’t see me, they just seen the [pressure] suit! They wouldn’t say, ‘How are you, Caroline?’ It was like boobied [whispers] big boobied women, they look at your boobs instead of looking at your face. And that used to really get me cross, I used to say: look I’m here! You know, I might have a suit on but I’m still here.’’ [Caroline] Another reference to feeling ‘‘like an onion’’ reiterated the additional layer imposed by the PG. There was a sense of her feeling fundamentally invisible as the PG contributed to her change in identity following the burn. Some family roles were markedly affected by participants’ restricted mobility and the hygiene requirements for scar management, as Caroline reported ‘‘missing out’’ on family activities. As a married woman, the appearance and location of the PG adversely affected her femininity and sexuality: ‘‘[Interviewer] You said ‘‘emotional stresses’’ there, what kind of things were you thinking about?’’ [Pause]. ‘‘Just not feeling sexy, not feeling very feminine, you know. Erm, almost sort of sexually cut off as well, because you are wrapped up. And it’s very hard to feel sexy with a non-sexy latex suit on you. Even when you’re going out or anything you know, ‘cause obviously can’t wear bras. So it comes right down to your hips. So it’s about as sexy as big fleecy pyjamas really.’’ [Caroline] Marie described how her scar management challenged her role at home, although at times, it was difficult to ascertain whether difficulties were attributed to her burn or her PG. As she struggled to carry out routine activities independently, she was forced to seek help from family and friends. Struggling to work around the limitations of her PG (such as itch and discomfort), she revealed frustration at losing her identity as an independent woman:

Please cite this article in press as: Martin C, et al. The experience of scar management for adults with burns: An interpretative phenomenological analysis. Burns (2016), http://dx.doi.org/10.1016/j.burns.2016.03.002

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‘‘I mean it was horrible because I was having to depend on other people. There’s little things that you can’t do that irritate you. I mean not being able to do the ironing, I do the washing and ironing and it’s out the way. But having to go and ask somebody else if they’d help me. That’s what irritates me more than anything else.’’ [Marie] Whereas Caroline and Marie focused on the challenges of retaining their identities with scar management, other participants expressed ambivalence around this. Jeremy was concerned that having a scar may influence how other people judged his character, and his hesitancy and difficulty in putting this into words enhanced the sense of anxiety around this: ‘‘People can see the scar, and see my skin graft, and I thought, that was my own worry about what people would react- it’s, you know, it’s not as bad as you know, what I’ve seen on medical programmes, it happened, you know. I just, I thought to myself people might think I’m a bit of-, you know.’’ [Jeremy] These anxieties persisted when wearing the PG, which could also threaten his identity by changing how he perceived he was viewed by others, and he feared being a ‘freak show’: ‘‘I suppose you think, I mean, thinking am I a freak show? When it’s very hot you sunbathe in the garden, got your shorts on. Luckily my neighbours’ children are old so they wouldn’t have asked me, but if I went into town to go shopping, you know, you sort of have the thought that ‘is that kid pointing at me?’’’ [Jeremy] The three remaining men, Keith, Graham and Ian, had portrayed themselves as emotionally resilient, ‘‘thickskinned’’ individuals with identities grounded in masculinity (e.g. ‘‘big strong lad’’). Although initially presenting himself as someone not ‘‘conscious’’ or ‘‘bothered’’ by his appearance, Ian’s commitment to the scar management routine for cosmetic reasons became increasingly apparent during his interview. His identity as a strong man had been threatened by the burn, and he indicated genuine but seemingly embarrassing concerns about his appearance that showed his vulnerability. The PG appeared to conceal this vulnerability from others, by concealing the burn, but at the same time it also indicated injury. At times, Ian struggled to maintain his strength of character: ‘‘I got an odd comment at work, odd comment if you’d gone out to see a football match or something someone would say, ‘what’s up with you with your gloves on?’ You know. You get that don’t you? Just laugh it off. [Pause] But I imagine if you’re not a strong character, it probably would affect you.’’ [Ian] By exposing Ian to the reactions of others, his PG therefore seemed to present him with confliction around his identity which may not otherwise have been triggered. For some other participants, scar management was generally positive in relation to their identities. Graham

5

described the functional and unobtrusive nature of the PG, minimising the emotional and practical impact of treatment on his life. He recognised that this may have been different if he had been female, or if his PG had been visible to others: ‘‘I suppose if it had been the arm [looks thoughtful], ah I suppose. . . Yeah I suppose the leg it is; you can’t see it so much. If it had been the hand or the arm it would be a bit more. . .really. Erm. A nuisance shall we say. I didn’t find it any problem, you know.’’ [Graham] For Anneka, who described feeling vulnerable following the burn, the PG allowed her to engage in typical social and routine activities in her domestic role: ‘‘It was just the ability to do stuff. I think, if I didn’t have the glove initially, I would’ve avoided more tasks at home. Like cutting the veg. Because initially when I didn’t have the glove, my husband used to have to chop the veggies. And stuff, I wouldn’t even do it. And he used to say ‘don’t do it, you could injure yourself.’ So, erm. Yeah [PG] just gave me that ability to do normal functions. Which I think I would have struggled longer with getting back to normality.’’ [Anneka] Ellie had struggled to cope with the impact of her burn, and avoidance (e.g. of looking at or touching her burned skin) was a key theme in her experiences but also her interview. Disclosures around the impact of scar management on her identity were largely omitted. However Ellie, like some of the other participants, suggested that an hour off from scar management was useful to re-engage with ‘‘normal’’ roles and activities. This highlighted the contrast between the novel personal and social challenges posed by the PGs and participants’ desires to hold onto their sense of self: ‘‘What kind of things would you do for that hour? Erm, sewing. Watch the soaps! [Laughs].’’ [Ellie] ‘‘Oh I just love it. It’s like, feel like you. . . I suppose you could put it to like somebody running through the fields naked – ‘cause you’ve got nothing on. Got nothing on. I can just go in bath and just do all the girly things I used to do, you know.’’ [Caroline]

3.3.

Integration of a Second Skin

This theme described the relationships that participants developed with their PGs. Despite various initial struggles to retain their identities while adapting to scar management, this theme demonstrated a shift as participants assimilated the PG into their daily routines. These treatment routines became increasingly habitual and participants came to recognise and rely on both the physical and psychological functions provided by the PGs of containing the person and protecting them from the outside world. The PGs appeared to become integrated into their physical selves as a supplementary skin, and for many of the participants, dependence developed.

Please cite this article in press as: Martin C, et al. The experience of scar management for adults with burns: An interpretative phenomenological analysis. Burns (2016), http://dx.doi.org/10.1016/j.burns.2016.03.002

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Both Jeremy and Anneka indicated a transition between seeing the PG as a separate entity and it becoming part of their body image:

garments over time. Some of their experiences, however, suggested the garments were gradually becoming integrated into their body image:

‘‘It’s like part of me. It’s become sort of part of, part of my hand!’’ [Anneka]

‘‘‘Cause they’re [renewed] every three months, by the end of week two, they’re just starting to get comfy. And they’re like your second skin again.’’ [Caroline]

Anneka appeared to value scar management from the beginning. Her burn had resulted in thin skin which made her feel vulnerable to further injury and pain. Wearing the PG provided her with protection and a sense of security, which was difficult to give up: ‘‘They keep on telling me they have to wean me off these gloves and I keep thinking oh [inhales], I’ll still wear them you know, on the train. You do get a little attached [chuckles] to your glove which might be a problem, you know.’’ [Anneka] These two participants then seemed insecure without their PGs, as there was a sense their skin may be threatened or vulnerable: ‘‘I did miss it to start off with, well I thought to myself, well just thought, I don’t have to wear it just. . .; But I’m still careful’’ [Jeremy] The feeling of safety and security provided by the PGs could make it difficult to reduce the use of PGs. This was even evident for participants who had experienced problems with the treatment: ‘‘As far as the scar management and pressure garments, well they drove me up the wall they did. They were horrible things’’. [Keith] For Keith, as well as Graham, and Ian, dependence on the PGs was only realised when the time came to finish their treatment. Acknowledging that they could feel anxious and vulnerable without their PGs was illustrative of the attachments they had formed: ‘‘When it got towards the end, I had trouble getting them off! Felt strange, after, you know. . .; I think you get attached to them.’’ [Keith] ‘‘Of course when the time came to not wear it at all, it felt quite strange. I missed it. It was part of my life for so long.’’ [Graham]‘ ‘‘I’ve still got them in there [gestures to the next room], I keep them in a little box. As I say I don’t wear them much now. I haven’t wore one for about a month. I took one on holiday with me, as I say. I’ll take one on the wedding.’’ [Ian] For Ellie, Caroline and Marie, there was no explicit dependence on their PGs. This may have been due to the relatively early stage the three women were at, as the other participants were nearing the end or had completed their treatment and may have become more attached to their

With Ellie, experiences of disintegration seemed apparent from her account. She in particular had struggled to come to terms with the burn, and described anxieties about seeing and touching the burned skin which was required for scar management. After disclosing fears of ‘‘falling apart’’ following the burn, which appeared to represent both physical and emotional concerns, Ellie described her scar management as ‘‘food and liquid’’ suggesting it nourished or healed her body. This may have addressed her fears of fragmentation: ‘‘There are days when, and it’s part of the healing, is, you know, you feel it itches a bit or it pinches. I think that, I was a bit concerned at first but then, just reassured that no, that’s it all. . .;moulding together again.’’ [Ellie]

3.4.

Psychosocial Functions of the PG

This theme includes two pairs of opposing functions of the PG that have both negative and positive interpretations. Socially, participants described how the PG could Signal Something Wrong With You, or would Hide What Was Underneath. The PGs also fulfilled the contrasting functions of a Comfort Blanket and a Straight Jacket.

3.5.

Signal Something Wrong With You

The exposure of the PG had various social implications for participants, often signalling to others that there was something wrong. This indication of disability or vulnerability challenged how participants were able to portray themselves to others, and invited questions and responses which may be unsolicited and unwelcome. In contrast, this communicative function of the PG sometimes had positive effects, by encouraging others to treat participants with care and sensitivity. Some of the participants indicated feeling anxious about their PGs. For Jeremy, this seemed particularly pertinent due to his own embarrassment around the circumstances in which he had sustained the burn. He had initially voiced concerns that his scar would receive negative attention from others: ‘‘People might think. . .;what’s this big sort of scar on your arm?’’ [Jeremy] The PG, however, could also be exposing. By communicating an abnormality, Jeremy feared his PG invited others to comment or ask questions, which were particularly unnerving due to his difficulties explaining the burn: ‘‘If people knew me they’d ask questions, little children might ask a really funny question, like ‘why’s he got that thing on?’ but luckily nobody did.’’ [Jeremy]

Please cite this article in press as: Martin C, et al. The experience of scar management for adults with burns: An interpretative phenomenological analysis. Burns (2016), http://dx.doi.org/10.1016/j.burns.2016.03.002

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Jeremy remained preoccupied with whether the PG would be noticed by others, and he worried about how to answer awkward questions. These experiences were shared by other participants, many of whom indicated a lack of choice over whether to talk about their burns, which were recurrently communicated by their PGs:

perhaps believing this to be more socially acceptable. However the comment above from Anneka ‘I still needed a sense of security from it’ accommodates ambiguity as to the provision of both physical and emotional security.

‘‘They say ‘bloody hell! What happened?’ And you go urh, same old story comes out, you know, I’ve sort of got it down now to about three sentences. ‘Cause, and my mate who I work with he’s sick of hearing it, I’m sick of telling it.’’ [Ian]

In contrast to the last theme, the PG also had a concealing function by hiding the burn. Concealing the injury avoided, to some extent, uninvited questions about the scar and was often considered by participants to provoke comparatively fewer questions than would the scar, due to the broader indication of physical injury. For some participants, concealing the injury protected them from difficult physical and emotional feelings associated with the exposure of their burned skin. By concealing the burn the PG concealed the extent of participants’ injuries, both from themselves and from others:

As well as inviting sometimes unwanted questions, the communication of injury could also elicit more emotive responses which could be difficult for some participants to cope with. For example, the PG could function in a manner which elicited care and sympathy, which may have positive consequences for some burn patients. For Caroline, however, kindness and sympathy challenged her coping strategies of being strong and self-sufficient, and consequently caused her distress: ‘‘I went up, and he said ‘oh, Caroline’ like this you know, and he got really upset about it, and I was, I felt awful that he was getting upset ‘cause of something that happened to me, then I thought, ‘don’t, because you’ll start me going’ and I don’t want to go down, I’ve got through that, I’m healing and I am looking forward.’’ [Caroline] In contrast, Ian found the communicative function of the PG could be advantageous. By indicating injury or vulnerability, it encouraged other people to make allowances: ‘‘If someone shakes my hand and they really squeeze, you know how some blokes do. And I have to pull back and say ‘whoa oh oh sorry’. So if you had your glove on, they wouldn’t squeeze your hand, they’d see it wouldn’t they? . . .;‘cause if you’ve got a glove on, there’s something wrong with you.’’ [Ian] At other times, the communicative function was valued because it gave participants an opportunity to explain their scar management. For Anneka, anxiety and uncertainty could be generated by an absence of questions, which left her to speculate about the perceived meaning of the PG: ‘‘I remember thinking, [whispers] do I wear this glove or not? What do I do? I’m embarrassed, you know. They might think I’ve got a disability, and I can’t operate the computer or something, you know, I was very embarrassed. So at the interview I wore it, because I was afraid it was all unfamiliar, so I wasn’t going to not wear the glove. Because I still needed that sense of security from it. So I came to the interview I wore the glove but then I said to the lady who interviewed me, I said ‘I’m so sorry I’m wearing this glove but it’s not because of a disability or arthritis or anything that will impact my ability to work. It’s purely for scar management.’’’ [Anneka] Usually when with others, participants often referred to the physical, rather than the psychological, functions of the PG,

3.6.

Hide What Was Underneath

‘‘It does create you quite a safety barrier. Because you know when you’ve got it on, people can’t see.’’ [Caroline] ‘‘I supposed to some degree, it used to hide what was underneath, you know. ‘Cause you could see how red it was, and sore. So imagine walking into the office, and writing and typing, folks would be looking you know. So if I had a glove on, they couldn’t see it really. They’d say ‘how’s your hands?’ So it does to a certain degree, it does hide things.’’ [Ian] ‘‘They wouldn’t know why I’ve got a pressure garment it could be, something completely different I suppose?’’ [Jeremy] Hiding the scar could prevent others from making assumptions about the person’s identity, as with Jeremy, by offering ambiguity around the reason for wearing the PG. Concealing the injury could also prevent adverse responses to the burns: ‘‘I suppose I’m more self-conscious, in what I would wear. So nothing sort of shows through I suppose. [Pause]. Because I don’t look at it fully, so if somebody else saw it I would think mm [grimaces].’’ [Ellie] For Ellie, Keith and Graham, the PG offered protection from sensory experience of the burned skin. Graham had seemingly accepted the PG with ease, both onto his body and into his routine. However, these participants expressed unease or anxiety when seeing or touching their scars, which the PG effectively helped them to avoid: ‘‘I thought well, there’s no point leaving it off. I didn’t get any itching or anything like that. You know. I didn’t like touching the leg anyway, it felt strange, where the injury was. Funny sensation.’’ [Graham] ‘‘If you put a shirt on, anything like that, you know, you don’t normally actually really feel it. But, when you’d had those [PGs] on all that time, and then, you suddenly start to

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wear clothes on that bit [arm], you can urgh, feels un- feels strange.’’ [Keith] ‘‘This [PG] is a bit of a comfort, comfort blanket in a way. . .;. I suppose for me it’s ‘cause it does cover up the scar. Erm. And I know that it’s making it better. And that’s why I don’t mind it.’’ [Ellie] Although the PG could prevent participants from being exposed to their scars, it was also capable of provoking reminders that they had experienced a burn. Keith, for example, had struggled to accept his loss of functioning following the accident and he experienced fears about his future. By concealing his scar from view, the PG helped him to avoid difficult reminders of the burn. Experiences such as itching and discomfort, however, returned his attention to the injury and at times, brought back his memories of recovering from the trauma.

3.7.

Straight Jacket

On a personal level, scar management was a source of physical discomfort, hindrance and inconvenience, as it restricted participants in their activities. This theme illustrated the diverse demands of scar management. Five of the participants struggled to manage the physical discomfort of the PGs, predominantly itch. This also appeared to have psychological consequences as it impacted on participants’ mood and coping abilities: ‘‘It does itch. And that’s, it really gets you cross. You can be sitting here with it being thoroughly uncomfortable, and you feel like going mad’’ [Marie]

hour now ahead of everybody else, and I used to resent it, thinking oh, you know, I’ve got to do this again, I’ve got to go back, I’ve got to do it again, and I can’t do this ‘cause of this, and I did resent it very much.’’ [Caroline] This impact on their day to day lives further demonstrated the negative relationship that scar management could have with participants’ identities. For example, Jeremy’s ‘‘special’’ routine conflicted with his desire for an inconspicuous, normal identity; Caroline’s mechanical description of her routine showed a loss of humanisation, as the PG began to take a dominant role in her life.

3.8.

Comfort Blanket

Alongside experiences of discomfort and inconvenience were experiences of physical and emotional comfort. Participants described how the PG soothed, comforted, protected, contained and reassured them, in diverse ways and to varying degrees. As the PGs reduced participants’ anxiety and gave them confidence, this theme demonstrated the process by which their attachments were formed. Some participants had indicated an awareness of external threats towards their burned skin (e.g. sun exposure and contact injuries from other people). The protection offered by the PG could provide them with security, comfort and confidence: ‘‘It’s like that thing of giving you confidence, making you smile and happy to go out and do stuff, you know. . .;. I used to panic if I didn’t have a clean glove or you know, I used to think oh no! You know. I would stop everything and go wash a glove. It was very important. Critically important for me.’’ [Anneka]

‘‘There was a couple of days where I went round I could have just pulled them off ‘cause they was itching and stuff like that, you know. Erm, used to affect me more when it was, days like today when it’s hot. Or humid.’’ [Keith].

There was also explicit talk of how the PGs improved confidence:

Some participants found this discomfort increased each time their garments were replaced:

‘‘The big thing, the whole big thing, I didn’t really think of it as the scar management for me it was more the confidence protecting my hand. That was really, that’s why I always say protective garment instead of pressure garment!’’ [Anneka]

‘‘It really is like a new pair of shoes, so er, yeah. It like er, you’re back to your straight jacket.’’ [Caroline] Three participants struggled with the inconvenience and repetitive nature of the treatment routine. Participants described losing spontaneity in being able to do ‘‘normal’’ things, and resented the time and effort required for their scar management: ‘‘It’s just a faff, thinking I’m going away at the weekend yep, think I need to take my cream, take my special towel, special flannel, a special everything.’’ [Jeremy] ‘‘I’ll be honest with you it was absolutely horrible. I just thought, well if this is what I’ve got to do everyday. You know its like, in the mornings it takes me, ‘shower, wash and wax’ as I call it, shower, wash everything down then I’ve got to oil and do everything. So everything I’ve got an

‘‘I was terrified in the kitchen to use knives and stuff. Because I was so afraid I might just slip the knife and oh! This vein’s so close now, you know. So. That was, it [PG] just gave me confidence to do stuff. . .;’’ [Anneka] Jeremy also experienced a sense of security from wearing the PG such that he was anxious when it was missing. On one occasion he found it had rolled down during the night, which triggered his anxieties about being somehow vulnerable: ‘‘I think to myself if it [PG] rolls down will it affect it [my skin]? But I thought, but they say no it’s not- it won’t, it’s not as if. . .; It’s not going to kill it, it won’t hurt it or anything I thought right fine.’’ His relief to once again wear the PG evidenced his need for its protection:

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‘‘How did it feel to get it back on then? It was like, it felt, like something was there, back on, snug again. Everything was, everything was happy again!’’ [Jeremy] For Ian, it was the limitations imposed by the PG which offered him protection. As the glove restricted the flexibility of his hand, it prevented him from causing himself further injury: ‘‘I do think it still could help. Not necessarily with the smoothing out of the, compression, but with the- it stops it throbbing. And ‘cause it restricts, ‘cause it’s quite tight, it restricts your movement. Sometimes I overdo it with this hand, I’m working, and I get home I think ‘ooh bloody hell my hand’. Say if I was to use a power drill, and I had to push in there [purlicue], I couldn’t do it for very long.’’ [Ian] As well as protection from harm, the functions of the PG also extended to offering physical and psychological comfort. Ian found the relief from throbbing was a significant benefit to wearing his PG: ‘‘I didn’t want to take it off. ‘Cause it used to ache, if I took my glove off for ten minutes it would start throbbing.’’ [Ian] This function had additional positive implications for Ian. In trying to advocate his ‘strong man’ identity, he had seemed conflicted by his anxieties around the changes to his appearance caused by the burn. As scar management could reduce the severity of these changes (by, for example, flattening the scar), Ian seemed eager to engage with treatment but struggled to admit this was for cosmetic reasons. This function seemed to provide him with a more acceptable reason (physical comfort) for continued use and reduced his identity conflict. Caroline also experienced comfort from the familiarity of her PG. Having already referred to it as a ‘‘second skin’’ and a ‘‘safety barrier’’, her language further indicated how her garment could be pleasant: ‘‘It’s like a pair of shoes, the first few days its stiff and hard, and by the end of your three months, your three suits are like an old pair of slippers, you’ve got them bedded in right, and they’re comfortable.’’ [Caroline] Despite being a ‘straight jacket’ for many participants, the PG was also strongly associated with the healing and protection of vulnerable skin which, in turn, had psychological benefits and provided comfort.

4.

Discussion

The current study aimed to explore the experience of scar management for people with burns. The experiences of eight adults with burns were analysed using IPA, resulting in two superordinate themes: Assimilation of PG Identity and Psychosocial Functions of the PGs. The findings are discussed in relation to existing literature, and the limitations and clinical implications are considered.

4.1.

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Assimilation of PG Identity

Scar management affected participants’ identities and the characteristics and roles which defined them and their everyday lives prior to the burn. This included their identities as men, women, parents, spouses and colleagues, and the data gave insight into the impact on these identities which has been mostly absent from qualitative research. Expanding on Connell et al.’s study with young women [25], the current study demonstrated the effects on sexuality at other points in the lifespan. Caroline was the only participant to describe the impact on her sexual identity; the PG appeared to inhibit her expression of sexuality by restricting her choice of clothing and preventing intimacy. Although the link between the monotony of PGs and feeling sexy has been reported in the literature [25], this finding demonstrated how the size and location of the PG may be relevant to such experiences. In Partridge’s stages of burn recovery [30] between six months and two years, individuals may shift between a ‘preburn’ self-concept and a ‘temporary scarred’ self, before they integrate the burn into their identities as ‘permanently scarred’. This theme encapsulated this struggle for many participants to adjust their identities, with scar management either supporting or challenging patients during this process. For some participants, who appeared to experience more conflict with scar management, Partridge’s model may explain their difficulties holding onto their pre-burn selves. For others, there was a sense of transition towards integrating the burn, and even the PG, into their identities. The ‘Integration of a Second Skin’ theme described how PGs became incorporated into participants’ bodies, routines and identities. In relation to theory around the functions of skin [10,12] the current findings suggested the PGs act as a skin substitute, by protecting, uniting and providing containment for an individual [10,11]. The PGs therefore replace not only the physical functions of the skin, but the psychological functions. This finding offers a more psychological understanding of patient experiences by acknowledging the challenges following a burn and the protection and reassurance that PGs may consequently provide. However, the findings show the complexity and contradictions in the experience of using PGs: while the PG can be containing and hold the person together while they recover from the burn, it can also render them invisible, hidden behind it. For Caroline it resulted in her need to declare ‘I’m still here!’ to reassert her continued existence. For health professionals working in burns services, this may considerably enhance their understanding of patients’ adjustment to, and possible reliance on, their garments.

4.2.

Psychosocial Functions of the PG

The PGs were a primary focus in all eight accounts of scar management. This theme gave insight into the social and individual functions of PGs, and the range of positive and negative experiences. Socially, for example, the findings were consistent with the literature on burns, which suggested unsolicited questions, or even fear of these questions, can cause anxiety and embarrassment [24]. By signalling to others that there had been an

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injury, the PGs could be experienced as negative if they invited unwelcome questions, which could have unique anxieties for patients (e.g. eliciting unwanted sympathy or causing embarrassment). This communicative function could also cause identity conflicts for patients, by suggesting abnormality or vulnerability which may be in contrast to how they attempted to cope with the burn. This communicative function could also be experienced positively, as it provided an opportunity for participants to explain their PGs and encouraged others to be gentle or could elicit wanted sympathy. These findings highlight the importance of understanding the individual nature of experiences in order to provide appropriate support and advice. Understanding the specific functions of PGs for individual patients is important so that they can be supported to reduce dependence on them as they approach the end of treatment. Concealing a participants’ burn had various implications. By hiding the scar, the PG concealed their identity as a burn patient which may be helpful during the early transitional stage if they have not yet accepted changes to their own selfimage [30]. This helped participants to navigate social interactions and avoid emotional reactions (e.g. disgust) or questions from others related directly to their scar. The PGs could further reduce anxiety by protecting participants from looking at or touching the burned skin; although this may mask difficulties for those burn patients who are struggling to do so. This superordinate theme also demonstrated a contrast between the discomfort and comfort offered by PGs. The findings demonstrated times when psychological reactions were more prominent (e.g. with the renewal of garments, or at the end of treatment) which may facilitate a better understanding of how patients’ management and experience of the treatment may fluctuate. The ‘straight jacket’ experiences often appeared to be temporary or contextual (e.g. while a new PG was broken in), whereas the ‘comfort blanket’ experiences appeared relatively more consistent (e.g. offering containment and feeling of security), which may offer an explanation of how patients tolerate or value their treatment overall. Although the existing literature has identified some of the practical, physical and social concerns with scar management, this theme described the contrasting positive experiences which have been mostly absent in burns research. The findings supported studies showing that patients can feel their bodies are threatened or vulnerable following a burn [9,31,32], and illustrated how PGs may offer protection from threat (such as damage or sun exposure), which expands on existing research [24]. Additionally, wearing PGs offered a broad range of positive functions for participants (such as physical comfort, protection, reassurance, and containment) which extended beyond the intended functions of treatment. These functions may be understood within the context of burns which can cause feelings of vulnerability and forces identity reconfiguration [30]. During this adjustment period, PGs may act like a transitional object by giving a sense of protection and security, and reducing anxiety in stressful situations. In this way, it provides both physical and psychological containment. At discharge, patients may experience increased anxiety around finishing their treatment without having replaced the functions of the PGs. Facing threats, such as social

interaction, sun exposure or cooking, as exemplified, may cause new challenges for patients. As PGs had become integrated into participants’ bodies and routines, there may be ongoing physical and practical reminders of the subsequent withdrawal of the PGs. It may therefore be likely that burn patients experience psychological issues from the loss of comfort and containment, and the demands of a new transitional period.

4.3.

Limitations

Although recruitment for the study aimed for a homogenous sample with regards to scar management, not all factors could be controlled for. There was variation in the type and size of the PGs, as well as the stage in which participants were at which, at times, appeared to have relevance for their experiences. Furthermore, these findings are not intended to be generalised to the wider population, but the range and depth of data offer insight into possible experiences of treatment. Future qualitative research may benefit from increasing homogeneity of the sample to better understand the meanings of scar management and the context in which they are understood for different groups of patients.

4.4.

Clinical implications

The findings highlighted the unique nature and relevance of patient experiences. Staff working in burns services need to be aware of the difficulties patients can face, and adopt a compassionate, understanding stance; enquiring regularly about each patient’s experience of PGs in order to provide support and problem solve as necessary. At the start of treatment, conversations between staff and patients about how to respond to stares, questions and comments from other people would be useful (e.g. using the Changing Faces ‘3-2-10 model [33]). Formulating anticipated social responses with patients may be important to understand how questions can affect them, and to develop tailored strategies to cope. Staff may also be able to pre-empt other difficulties early on in treatment through discussing patients’ dependence on their PGs, and bringing a more conscious understanding of this so that ending treatment can be managed with support. Utilising the team psychologist would be beneficial to allow patients to explore their feelings about using PGs and ending treatment and, importantly, to begin psychological therapy when this is of benefit, as well as facilitating multidisciplinary working around these issues.

4.5.

Further research

The findings were based on data from both men and women with varying degrees of burns; however, it is important to explore the experiences of scar management within the context of wider demographical diversity, e.g. participants from different ethnic backgrounds and younger adults. The experiences of scar management were embedded within the wider context of hospitalisation and the experience of the burn itself. It was interesting to note that skin grafts were rarely discussed in the interviews, although donor sites were potentially an additional site of scarring, another source

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of discomfort, and can result in fragile skin [34]. There was evidence, however, of participants’ ideas around the mobility and fragility of skin, and it is possible that preceding experiences of skin grafts may have influenced these concepts. Further qualitative research of burn treatments and hospital experiences would be useful to contextualise the findings.

5.

Conclusion

The current study offers new insights into the experience of scar management, particularly PGs, suggesting it has a range of positive and negative implications for burn patients. PGs can have psychological effects (increasing feelings of confidence, security or anxiety), physical effects (such as relief, protection or discomfort), and social effects (by concealing or signalling injury). Although adjusting to treatment may be difficult for many patients, completing treatment may be equally challenging, as some patients come to depend on their PGs. It is important for staff working with burn patients to take a person-centred approach to understanding and managing the difficulties associated with scar management. Support and advice to manage social responses would be particularly helpful in addition to the provision of psychological support for any difficulties that may arise associated with scar management. Further research is needed to identify if the experiences of other groups differ from these findings. Overall, the current study demonstrated diversity and complexity around the impact of scar management for burns.

Conflicts of interest The authors declare that they have no conflicts of interest.

Acknowledgements This research was funded by the University of Leicester, and sponsored by Leicestershire Partnership NHS Trust. We would like to thank Susan Harvey (Occupational Therapy Assistant) who provided information about scar management and assisted with the practicalities for conducting interviews. We are also extremely grateful to the participants for sharing their experiences for this research.

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