Workstream 3: qualitative interviews to explore patient and clinician perspectives regarding SWHSIs

The absence of available literature meant that there was limited knowledge about patient experience of SWHSIs or their impact when we began this programme. There was also a lack of research about patient and professional opinions regarding wound management, treatment options and relevant outcomes in relation to measuring treatment effectiveness. These key elements were explored through qualitative interviews with both patients and health professionals (surgeons and nurses). A paper detailing findings from the patient interviews has been published (see Appendix 7).40 A paper detailing findings from the clinician interviews has been published (see Appendix 8).

Objectives

To explore, using qualitative interviews:

• patients’ perspectives and experiences of living with a SWHSI and to elicit their views regarding management and desirable outcomes
• NHS professionals’ views and experiences concerning treatment choices for SWHSIs.

Methods

The purpose of this qualitative research was to explore the daily, lived experiences of patients with a SWHSI and to understand health-care professionals’ perspectives of managing these wounds. The topic guide developed for use with patients (see Appendix 9) comprised a few key questions to encourage in-depth exploration of how a SWHSI might affect every aspect of patients’ lives. Patient advisors were asked to comment on the content and clarity of the patient topic guide prior to its use. During interview, individual patients were encouraged to identify and speak freely about any issue related to their SWHSI that affected them. The clinicians’ topic guide (see Appendix 10) similarly encouraged clinicians to fully express their own perspectives, with the topic guide acting as a flexible tool to guide the discussion.

Patients and clinicians were recruited from both acute and community nursing services in two settings in the north of England: one was a large city with an economically and ethnically diverse population and high levels of deprivation and the other was a smaller city, also with high levels of deprivation and ethnic diversity.

Patients were eligible to participate if they had a surgical wound considered to be healing by secondary intention by the referring clinician, were aged ≥ 18 years and able to give informed consent. Patients were purposively sampled to include those who had SWHSIs that were slow to heal or non-healing, and to ensure representation across sex, age, duration of wound and surgical discipline (e.g. general, vascular, orthopaedic surgery). We aimed for ethnic diversity within the patient sample and for a range of patients from both acute and community treatment settings. Potentially eligible patients were identified and approached regarding study participation by a member of their usual health-care team. Clinicians were purposively sampled from among those with responsibility for caring for patients with SWHSIs, and a range of clinicians from community and acute settings were selected for participation.

The backgrounds of the two researchers involved in the study differed: one was a registered nurse with extensive experience of applied health services research, whereas the other had a background in social sciences research. The two researchers, who were co-located in the same office, held regular, informal meetings during data collection to discuss any differences and ensure consistency of approach. No significant differences were identified in the data collected by the two individuals.

Semistructured interviews were conducted in patients’ homes and at the clinicians’ place of work. Interviews with patients lasted approximately 1 hour (interviews with surgeons ranged from 30 to 45 minutes and those with nurses ranged from 60 to 75 minutes). All interviews were audio-recorded and fully transcribed before being analysed for thematic content using the ‘framework’ approach (see Appendix 11).41 Interviews continued until no new information was forthcoming.42 After familiarisation with the data set and initial identification of themes, a coding framework was developed to allow for linkage between participants and their responses and comparison across the full data set. This coding framework was modified during the initial phases of data analysis to accommodate new responses from patients. Interpretation relied on the abilities of the analysts to determine meaning, salience and connection.43 The input of patient advisors was sought during the analytic process and advisors were asked to contribute to reflections on the meaning and interpretation of the data arising from the interviews.

The study received research ethics approval from Yorkshire and the Humber – Leeds Central Research Ethics Committee (reference 11/YH/0313) and written, informed consent was obtained from all patients prior to participation in the interviews.

Results

Patient interviews

Twenty patients with SWHSIs participated in the qualitative interviews. The mean age of patients was 53 (range 19–76) years, with an almost equal split in sex (11 women and nine men); 19 patients were of white British ethnicity and one was of South Asian ethnicity. The surgical procedure preceding the SWHSI was abdominal surgery (11 patients), vascular surgery (five patients), orthopaedic surgery (two patients) and excision of pilonidal sinus and drainage of abscess (one patient each). The median duration of SWHSIs was 5.5 (range 1.5–60) months. Further details of the sample are presented in Table 15.

Six emerging themes were identified through the interviews: (1) initial reactions, (2) wound symptoms, (3) expectations of wound healing, (4) psychosocial impact, (5) service provision and (6) SWHSI treatment.

Initial reaction

Unexpected SWHSIs (i.e. following emergency surgery or a dehisced wound) resulted in feelings of alarm, shock, disbelief and disgust among patients. This was most significant in patients whose SWHSIs resulted in the exposure of their internal organs. These patients frequently reported that they had presumed that their wound would be stitched closed and they were shocked and confused when this had not happened. When wounds were extensive, patients indicated their fear that the wound ‘would never heal’, to the extent that they could often recall the specific dimensions of their wound at various points in time.

In contrast, elective SWHSIs (e.g. from an elective partial foot amputation in a diabetic patient) resulted in less shock and alarm in relation to the initial appearance and immediate impact of the wound. These patients frequently viewed surgical intervention as a means of respite from pain, as well as offering a reduced risk of limb loss. Given the planned nature of these wounds, preoperative discussion with clinicians regarding their postoperative surgical wound was much more common in this group of patients, which is likely to have helped to manage patient expectations.

Wound-related symptoms

Wound-related symptoms were reported as having a negative impact on daily life, physical and psychosocial functioning, and sense of well-being. Frequently reported symptoms included pain and reduced mobility; leakage; smell; difficulties with personal hygiene; reduced appetite; disrupted sleep; lack of energy and low mood; skin problems; and side effects from wound-related medication (such as analgesia).

The limited physical mobility (and especially being unable to drive) was particularly frustrating for patients and disruptive of normal activities. In addition, patients felt unable to socialise, as they believed that the wound smell and exudate might be offensive to others.

Healing expectations

The majority of patients with open abdominal wounds feared that their wound would never heal. Patients reported frequently feeling disappointed, dismayed and frustrated with the slow healing process of their SWHSI and lack of, or delayed, healing also resulted in increased anxiety about future surgery for some patients. These feelings were intensified when patients had experienced healing delays due to infection. Many of those who had experienced previous SWHSIs expected healing to be a slow process, whereas patients without a previous SWHSI often had unrealistic expectations of time to healing. Patients’ expectations often conflicted with information provided by health-care professionals. Comments from health-care professionals regarding the wound and its prospects of healing often had profound implications for patients. Positive remarks were a morale boost, whereas negative remarks frequently adversely affected the patients’ general outlook. When conflicting information was provided, this was identified as a cause of confusion and consternation.

Patients were ever-hopeful that a new or untried treatment might accelerate or achieve healing of the wound, and they often looked to tissue viability nurses, regarded as experts in their field, to provide a solution for their unhealed wound. There was a willingness among patients to undergo almost any procedure or treatment if it might promise accelerated healing, even if it was unpleasant.

Psychosocial impact

Surgical wounds healing by secondary intention were frequently found to have a devastating effect on the lives of patients and their families, particularly following emergency surgery or if associated with a large cavity. Patients reported feeling uncertain and anxious following their surgery, particularly in relation to wound healing, physical health, financial concerns and relationships with others.

Patients felt that they had become isolated, withdrawn from society and confined to their homes while their SWHSI was healing. Patients receiving NPWT as a SWHSI treatment reported feeling unable to leave the house due to the pump and tubes associated with the device and concerns about their self-image in public. Feelings of isolation were particularly acute in patients who were incapable of driving after surgery, especially if they were the only car driver in the family. Disruption of established roles and responsibilities within the family unit was common and patients often reported feeling burdensome and dependent. Anxiety was also extremely common and often multifaceted.

The financial impact associated with SWHSIs was severe for some patients and their families, causing high levels of stress. The uncertainties and restrictions associated with SWHSIs appeared particularly difficult for younger male participants who were often the main earner in the family. Family members were also affected as they tried to balance maintaining the household income and acting as a carer for the patient. Out-of-pocket expenses in relation to transport to clinic appointments were troublesome for several patients, particularly for those who were unwilling to use public transport to attend appointments due to concerns about wound odour and who preferred to pay for private taxis.

Most participants described support from partners, family members, friends and neighbours as crucial, whether that support was practical (e.g. with transport and shopping) or emotional (helping them to adapt and adjust to living with their wound). Some older patients were, however, reluctant to ask their offspring for assistance, preferring to try to manage independently if they could.

Living with a SWHSI had a profound impact on patients’ mental well-being. Almost one-quarter of patients indicated that they had become depressed as a result of factors associated with their SWHSI. This was sometimes associated with acceptance of the diagnosis of the condition (e.g. Crohn’s disease) that had resulted in their SWHSI. Other patients did not report feeling depressed, but did acknowledge periods of low mood as a result of their experience of living with a SWHSI.

Service provision

Patients were managed in a variety of settings, including acute hospital and community settings, where district, community or general practice nurses predominantly gave patient care. Reported impressions of care were wide ranging, from ‘brilliant’ to ‘rubbish’.

Prolonged or multiple hospital admissions were common. Duration of hospital admission ranged from an overnight stay (abscess drainage) to 9 months (spinal surgery). Patients indicated that timely provision of information, and regular contact with surgeons (especially those who had performed the operation) and nurses during this time, was important and valued. Comments from surgeons regarding general progress and wound healing were highly important to patients. Positive comments generated reassurance, whereas brusque and hurried interactions led to patients feeling unheard, dismissed and angry.

Several patients reported that their wound dressings had not been changed as frequently as they thought necessary while in hospital and a majority reported that their care on the wards was less than satisfactory. Significantly, many patients reported feeling dissatisfied and unsupported at the point of hospital discharge, due to a lack of available information relating to follow-up care and risks, symptoms and management of infection. Following discharge from hospital, however, only a minority of patients felt unsupported.

All patients expressed views about the district, community and general practice nursing service, with the majority having received home visits by district, community or general practice nurses during their healing pathway. It was widely perceived that the district, community or general practice nurses had limited time to devote to visits, leaving patients feeling that visits were rushed, although there was acknowledgement that the nurses had tried to attend to all needs during the visit. Patients also indicated that the unpredictability of visit timings caused substantial frustration and inconvenience, and for three patients, care via a general practice or treatment centre nurse was preferred, due to convenience and ongoing continuity of care.

With specific regard to district, community or general practice nursing services, patients were particularly troubled by a lack of continuity of care, with some patients claiming that they would ‘never see the same nurse twice in a row’. Patients became anxious when they received conflicting information regarding the condition and likely healing and management of their wound, particularly if the information given was at variance to that provided by their surgeon.

SWHSI treatment

The main wound treatments experienced by study participants were NPWT, debridement, dressings and skin grafting.

Eleven patients had experience of NPWT, which they generally viewed as an effective treatment. The majority of patients receiving NPWT had undergone bowel or abdominal surgeries; however, patients also experienced NPWT for foot and orthopaedic surgical wounds. Perceived advantages of NPWT included reduced dressing change frequency, compared with ‘traditional’ dressings, and a reduced risk of wound infection. Patients did, however, note that NPWT dressing changes were painful when sponge or foam, rather than gauze, were used. Patients with prior experience of NPWT reported that some district, community and general practice nurses lacked appropriate knowledge, experience and expertise in NPWT and, in some instances, required guidance from the patient in its application. Perceptions concerning lack of nursing expertise in the use of this therapy were linked to feelings of anxiety by some patients. Several patients reported that they were disinclined to go out of the home with NPWT in situ, due to it being cumbersome or due to embarrassment about the equipment, and when they did leave the house they felt a need to somehow disguise the device. Patients also reported delay in discharge from hospital due to difficulty associated with obtaining NPWT within the community setting and they expressed the view that this treatment was more easily administered within a hospital environment as opposed to community settings.

Six patients had undergone wound debridement and described this as an extremely painful procedure. The rationale for and potential effectiveness of debridement were often poorly communicated to patients.

Three patients underwent skin grafting as a method of promoting healing, with a further two participants having discussed the possibility of a skin graft for their SWHSI. Views regarding the desirability of skin grafting were mixed, due to fears of infection and/or graft failure.

Patients reported that they would have liked more information from clinicians about the rationale for using different treatment methods and approaches, including different dressings, and they described nurses as rarely ‘singing from the same hymn sheet’ when selecting dressings.

Clinician interviews

Five surgeons and seven nurses participated in the qualitative interviews: two general surgeons, two vascular surgeons, one plastic surgeon, three tissue viability nurses, one general surgery nurse, two district nurses and one community staff nurse. Further details of the sample are presented in Tables 16 and 17.

Six themes were identified in the interview data: (1) factors influencing SWHSI development, (2) devolving care to nurses, (3) multifaceted assessment, (4) NPWT for specific types of SWHSI, (5) presumed cost-effectiveness and (6) dressing selection by nurses.

Factors influencing SWHSI development

Surgeons and nurses identified that the main types of SWHSIs encountered were extensive cavity wounds (e.g. from abdominal or pilonidal sinus surgery), open wounds on the feet of diabetic patients and wounds associated with lymph node removal (e.g. in the axilla and groin). Abdominal surgery wounds were regarded as being most likely to heal slowly or not to heal and were thought to be most likely to dehisce.

Both surgeons and nurses broadly agreed that there were a number of factors that predicted slow or no healing. These included surgical factors (e.g. emergency surgery, reason for surgery, type of procedure or presence of a foreign body), patient comorbidities or factors (e.g. obesity, diabetes mellitus, cancer, arterial and/or vascular disease, impaired immune system or Crohn’s disease, nutritional status, smoking status and age), infection, medication, restricted mobility and lack of treatment compliance. It was, however, noted that in many instances it was difficult to identify any specific reason for impaired wound healing.

Wound healing was sometimes viewed as completely unpredictable: a wound was said to sometimes progress well, stop healing for a period, with no obvious explanation, and then recommence healing. It was suggested that a pause in healing might occur following removal of NPWT. Overgranulation was also mentioned as a factor that could delay the final stages of wound healing.

Devolving care to nurses versus ‘looking after our own’

Surgeon involvement with the wound management of individual patients was related to wound-related factors, as well as the patient’s general condition and the nature of the surgery. The two general surgeons included in the study indicated that usually their patients’ wound care was passed on to nurses following discharge. However, the two vascular and one plastic surgeon interviewed said that they were more likely to continue to have personal involvement in wound care for ‘their’ patients through follow-up in specialist clinics, which they described as ‘looking after our own’.

Surgeons and/or tissue viability nurse specialists generally initiated the decisions to use NPWT. Ward, district and community nurses indicated that there was limited knowledge and expertise about use of NPWT among general nurses working in both acute and community nursing settings. Tissue viability nurses reported that they were often regarded as the first port of call for expert advice in relation to complex non-healing wounds and use of NPWT.

Assessment is multifaceted and complex

Factors cited by the surgeons as associated with wound healing were the size of the wound; presence of wound infection, slough and/or granulation tissue; whether or not the wound appears to have healed superficially, but remains unhealed at a deeper level; level of exudate; the condition of the wound edges; the patients’ general condition, including nutritional state and ability to mobilise; signs of overgranulation; whether the wound seems ‘static’ and/or appears to be colonised; and blood supply at the wound site. Nurses described similar factors as affecting wound healing. They also emphasised psychosocial and practical issues that might have an impact on patients’ quality of life, such as level of family support and patients’ potential for self-care of the wound. Tissue viability nurses, for example, commented that they would adopt a holistic approach to assessment, by gathering background information about the history of the wound, as well as other relevant details about the patient’s physical, social and psychological status.

Only one nurse mentioned using a wound-specific assessment tool – the TIME (Tissue, Infection, Moisture and wound Edge) tool – during the initial wound assessment.45

Perceived advantages and disadvantages of negative-pressure wound therapy

Negative-pressure wound therapy was favoured for a variety of reasons. Surgeons reported that the use of NPWT was increasing and that complex cavity wounds (e.g. extensive abdominal wounds) were ideally suited to benefit from NPWT. It was perceived that NPWT controlled exudate, contained and limited contamination (reducing infection risk), supported resolution of infection, promoted growth of granulation tissue, hastened wound healing and was liked by patients because it was convenient, promoted mobility, enhanced quality of life, shortened hospital stay and reduced the number of required dressing changes. Clinicians generally perceived NPWT as a cost-effective and transformative treatment, particularly for patients with hard-to-heal wounds.

One tissue viability nurse did, however, express strong reservations about the perceived ‘espoused universal benefit’ of NPWT, noting that it was not necessarily ‘the answer to everything’ and inappropriate for some patient groups. This view was supported by some surgeons and nurses who indicated that NPWT was an inappropriate treatment for some types of wound, particularly in patients following abdominal surgery who might be at risk of developing fistulae, as well as some patients who were unable to cope with the device. The same tissue viability nurse felt that NPWT was sometimes ‘oversold’ to patients, raising expectations unrealistically. This nurse also commented that longer-term healing of SWHSIs could be impeded by the use of NPWT due to the use of foam, rather than gauze dressings, which, they suggested, could result in the formation of less ‘robust’ granulation tissue. Further disadvantages, perceived by surgeons, included its lack of suitability for some patients who might be unable to cope with the equipment due to frailty or impairment, limited availability in the community, high cost, and the need for staff (predominantly nurse) training in its application. Disadvantages from a patient perspective mentioned by nurses were anxiety and disruption to sleep, and restrictions, even with ‘portable’ devices, when mobility increased in the time following surgery.

Presumed cost-effectiveness

Three surgeons noted the lack of research evidence relating to NPWT, but felt that their own and their colleagues’ experiences supported its use. These surgeons perceived NPWT use as increasingly widespread and safe. They viewed NPWT as a cost-effective treatment option on the basis that patients with complex wounds could be discharged from hospital sooner, required less input from district, community or general practice nurses (in terms of dressing changes), once back in the community, and could return to work more quickly.

One surgeon was of the opinion that there was currently sufficient evidence to support the use of NPWT and referred to various studies (small scale, mainly case series) apparently demonstrating its effectiveness. This surgeon, the strongest advocate of NPWT among those interviewed, asserted that the advent of NPWT had ‘changed practice considerably’.

Dressing selection usually devolved to nurses by surgeons in the study

Surgeons’ knowledge concerning dressings was, by their own admission, limited, resulting in reliance on nurses to make appropriate dressing choices. The nurses described how wound, patient and general factors influenced wound management decisions. Nurses felt that they had adequate information to support wound management decisions for most routine SWHSIs, with choices determined by local guidance (formularies and protocols), that purported to be evidence based, alongside an appreciation of the need for cost-effective treatment decisions, patient preference and likely concordance, and inclusive of the views of colleagues.

Nurses also commented that if they were uncertain about how to manage a complex, non-healing open surgical wound, they would contact tissue viability nurse specialists for advice and guidance. The tissue viability nurses noted that in these situations, they were able to draw on each other’s knowledge and experience in dealing with difficult-to-heal wounds, through their involvement in close-knit clinical teams and other wound-focused clinical networks.

Similarities and differences between responses from surgeons and nurses

Surgeons and nurses were in broad agreement about the types of wounds likely to be slow to heal/non-healing and their symptom burden. During interview, tissue viability nurses focused, more than surgeons, on describing the possible psychosocial and financial consequences for patients of experiencing a SWHSI. Tissue viability nurses explained that they had more time than surgeons to explore the range of impacts of a SWHSI on the lives of individual patients and their family members; in their interviews, surgeons tended to focus mainly, though not exclusively, on clinical aspects of patients’ surgical wounds and healing.

Tissue viability nurses reported their own first-hand experiences of the challenges of managing patients’ hopes and expectations for healing. Nurses suggested that sometimes patients appeared ill-informed about likely healing projections after discharge from hospital and they said that sometimes there appeared to be a ‘mismatch’ between surgeons’ and patients’ expectations for healing (with patients holding unrealistic expectations).

Six of the seven nurses interviewed were in agreement with the study surgeons’ views that NPWT is effective in the management of SWHSIs, particularly in the management of wound exudates, due to the good dressing seal that can be obtained and the potential for reduced likelihood of infection, resulting in perceived speedier healing of the wound. Reservations expressed by the seventh nurse related to the use of gauze rather than foam in the application of NPWT (she thought use of gauze caused less pain to patients) and the possibility of patients with an abdominal SWHSI developing an intestinal fistula connected to use of NPWT, a concern also noted by the general surgeons. Surgeons and nurses both commented that NPWT was not a suitable treatment for the very frail (who could find the equipment difficult to manage) and/or for patients with cognitive impairment.

During interview, surgeons were more likely than nurses to talk about perceived cost-effectiveness of NPWT in relation to length of hospital stay, reporting that use of NPWT allowed patients to be discharged from hospital sooner than with use of conventional dressings; surgeons also pointed to a reduced need for dressing changes by community-based nurses, which they perceived as beneficial in terms of reducing these nurses’ workload and accrual of savings to the NHS. Variability in community and district nurses’ expertise in application of NPWT, and the need for more widespread training in its application, were reported more frequently by nurses than surgeons, who appeared to be less aware of these issues.

Conclusions

To the best of our knowledge, this is the first study investigating patients’ and clinicians’ views about the management and treatment of SWHSIs, and patients’ experiences of living with this condition. Findings from our study therefore lay the groundwork for further research in this important aspect of health care about which so little is known. For example, understanding more about what matters to patients helps to ensure that appropriate outcomes are captured in future trials.

Patients’ initial reactions to their SWHSIs were of shock and disbelief, and the visual reminder following surgery of a ‘violated’ body intensified these feelings, particularly for patients with large abdominal cavity wounds. Having a SWHSI had a substantial impact on daily living and this impact was particularly important for those patients with children or in employment, who constitute a younger demographic than seen in previous wound research associated with other wound types. As healing progressed, patients were concerned with both their own reaction to the wound and the reactions of others. The long healing process for many patients, characterised by a reduced quality of life and a constant need for treatment and care, concurs with previous evidence in relation to patients with other wound types or ulceration.46–53 It is worth emphasising, however, that SWHSI patients are typically much younger than patients with leg or pressure ulcers and frequently have major caring and employment responsibilities: Cullum et al.27 reported a mean age of 79.65 (SD 11.32) years for venous leg ulcer patients, a difference of 25 years when compared with the mean age observed in workstream 1 [54.1 (SD 18.2) years]. Wound care experiences among patients varied greatly, but most patients were willing to try any treatment that promised healing. Understanding the ‘lived experience’ of patients is crucial for clinicians to provide effective management and improve patient quality of life. Establishing a therapeutic relationship and listening to patient concerns is vital to meeting patient’s physical, emotional and psychosocial needs during the wound healing process. The provision of additional information for patients in relation to the rationale of treatment choices is also an important element for consideration with regards future treatment delivery.

Clinicians had varying levels of knowledge in relation to wound care treatment options. Nurses were frequently responsible for dressing choice decisions, made on the basis of wound condition, clinical experience and recommendations. A treatment frequently favoured by clinicians was NPWT. The lack of robust evidence for this treatment option was noted by several of the study clinicians; however, for many, individual experiences of its use were deemed to sufficiently demonstrate the effectiveness of this treatment.14

The use of purposive sampling enabled us to obtain a diverse range of views from both patients and clinicians. It is noted, however, that only a limited number of interviews were conducted with clinicians. Therefore, further research may be warranted to build on these findings.

Generalisability in qualitative research involves thinking through what kind of relationship the study findings have with other populations and settings, and unpacking exactly what inferences can be drawn from the data analysis.41 Our study yielded ‘rich’ data that captured a wide-ranging, yet in-depth, picture of significant issues relating to patients’ and clinicians’ views and experiences of SWHSIs. The study findings, therefore, promote and enhance understanding of the impact of a SWHSI on patients’ lives, as well as describing the challenges faced by clinicians in managing these wounds, thereby adding to the evidence base by ‘sensitising’ readers, including the research community, to new ways of thinking about SWHSIs. Our study findings may be considered transferable to the ‘parent populations’ of patients with SWHSIs and the clinicians looking after them; however, decisions concerning broader extrapolation of the findings must take into account any study-specific contextual factors that may limit applicability.41