How and why patients self‐treat chronic wounds

ABSTRACT

The aim of this study was to investigate how people self‐treat chronic wounds, why they self‐treat and the assistance and support that they receive.

The increasing emphasis on self‐management of chronic conditions, the potential benefits of self‐treatment to the health care consumer and competing demands on health care funding are good reasons to investigate self‐treatment of chronic wounds as we have little data on this group of individuals.

A survey study was conducted in Australia. A non‐random sample of 100 participants was recruited. Participants were aged 18 years or older and currently or previously had a chronic wound that they self‐treated. All participants completed one survey. Data analysis involved descriptive statistics.

The sample was, on average, 64·6 years of age; half was female (n = 50, 50%), and the majority had a lower leg wound (n = 80, 80·0%). The sample scored 33·9/40 on the Generalized Self‐efficacy Scale and 68/100 on the Medical Outcomes Social Support Scale. The majority of the 89 participants who used a wound dressing used a product that targeted bacteria (n = 59, 66.3%). The two most commonly selected reasons for self‐treating were ‘to be independent’ (n = 58, 58·0%) and ‘to do the treatment at a time that suited’ (n = 55, 56·0%). Less than one quarter of participants reported being supervised regularly during the wound episode (n = 22, 22%), and few (n = 6, 6·0%) reported having received education and training to support their self‐treatment.

Self‐treaters of chronic wounds may benefit from standardised education and closer professional supervision to optimise self‐treatment practices. Efforts to improve patient satisfaction with professional care are required to promote a shared‐care model when self‐treating and to optimise patient outcomes.

Introduction

Chronic wounds are an international concern, affecting 1–2% of the population in Australia 1, with similar rates in the UK and the USA 2. The association between chronic wounds and more common chronic health conditions (such as peripheral vascular disease, diabetes and obesity) place many more individuals at risk of developing chronic wounds as these conditions can cause wounds to develop and are associated with delayed healing 3.

Chronic wounds are often painful; can require intensive treatment; and can have a negative effect on the physical, emotional, social and lifestyle domains of quality of life 4. This condition is also an economic burden, costing the Australian health care system an estimated US2·85 billion per annum 5 and presenting out‐of‐pocket costs equivalent to 10% of disposable income 4. The burden is also significant in the UK and the USA where chronic wounds are estimated to cost €4·5 billion per annum 6 and US$25 billion per annum 7, respectively.

Skin and wound care is typically provided by an interdisciplinary team and is a major component of the care provided by nurses 8, 9. Although health care providers promote self‐management for a range of health conditions, self‐treatment of chronic wounds has not been a major focus of care or research to date.

Background

Self‐treatment of chronic wounds involves wound cleansing, wound inspection, applying and removing wound dressings and/or applying and removing other therapies such as compression bandaging 4. How and why individuals self‐treat chronic wounds has not been systematically investigated, although this practice has been noted as preferable and acceptable in case study research 10 and is reported to occur among individuals who have malignant wounds 11, 12.

Self‐treatment of wounds has, however, been investigated among people who have acute wounds. Australian research has considered self‐assessment of post‐surgical infection and has found that patients may over‐assess 13 and under‐assess infection 14. A Canadian study of abdominal surgery patients who self‐treated post‐discharge found the majority of patients (86%) believed that the written information they received about self‐treatment was inadequate 15, and a study of Taiwanese patients who had traumatic wounds suggested that knowledge deficits may be improved with educational interventions 16.

Self‐treatment has also been evaluated in research conducted with drug users who sustain acute wounds associated with injecting. Injecting drug users in one small quantitative study conducted in France were typically younger; predominantly male; and usually treated abscesses, infected skin wounds and cellulitis 17. Self‐treatment is a common practice for injecting drug users, performed by 94% of participants in another, larger qualitative study conducted in the USA 18. Injecting drug users typically manage their wounds independently, a very large quantitative study in Mexico finding that only 12% of participants sought medical treatment from a clinic or hospital 19.

Although self‐treatment of chronic wounds has not been well explored, the engagement of the chronically wounded in self‐management of lifestyle behaviours that are conducive to healing and recurrence prevention has been reported. Participation in exercise, good nutrition and skin care has improved wound outcomes and well‐being in leg ulcer patients 20, 21, 22, 23, 24.

Self‐management has been successful in improving symptom control, satisfaction and quality of life in other areas of chronic disease 25, 26; therefore, the investigation of this approach for people who have chronic wounds is worthwhile. Furthermore, optimising patient involvement in wound care is a recognised approach to the management of this patient group and a best practice standard 27. To date, little is known about the characteristics of people who self‐treat chronic wounds, and therefore, there is limited evidence on which to base future strategies to optimise self‐treatment.

Aim

The aim of this study was to investigate how people self‐treat chronic wounds, why they self‐treat and the assistance and support that they receive.

The study

Design

A descriptive survey study was conducted in Australia. General media and professional networks were used to advertise the study from 12th November 2014 to 27th September 2015. Potential participants contacted the researcher, were provided information about the study and were screened for eligibility. The study recruited a convenience sample of 100 participants.

Eligibility

The inclusion criteria were:

• Aged 18 years or older.

• Resided in Australia.

• Was English speaking.

• Had a chronic wound (at the time or previously).

• Was currently conducting (or had previously conducted) self‐treatment of the wound.

The exclusion criteria were:

• Significant cognitive impairment.

• The terminal stage of an illness.

Data collection

Data collection involved the participant completing one survey on a hard copy form or online using a survey administrator (SurveyMonkey Inc, Palo Alto, CA). The content of the survey was informed by a literature review and appraisal of wound care standards 28. Validated instruments included the Generalized Self‐efficacy Scale 29 and the Medical Outcomes Social Support Scale 30, both selected as disease‐specific instruments were unable to be sourced. Purpose‐designed questions collected information about how participants self‐treated their wounds, specifically the self‐treatment activities that they conducted and the wound dressing products that they used. Additional questions considered the reasons why participants self‐treated and the education, advice and support (professional and non‐professional) that they had received.

While self‐report surveys are considered suitable for the collection of data from people who have chronic wounds, there is a risk of bias 31. To minimise bias, the survey tool was piloted in electronic form by 10 individuals (patients, wound nurses and researchers). Minor changes were made to the structure and content of the tool prior to use in the study.

Ethical considerations

Guidelines for the ethical and responsible conduct of research 32, 33 were applied, and Human Research Ethics Committee approval was obtained from the University.

Data analysis

Data were analysed in SPSS (IBM SPSS Statistics for Mac, Version 22.0; IBM Corp, Armonk, NY), and descriptive statistics, including frequencies, mean and standard deviation, have been reported. The Generalized Self‐efficacy Scale was scored by summing all responses (range 10–40 points), and the Medical Outcomes Social Support Scale 30 was scored by calculating an average score for each subscale item. An overall support index was calculated by dividing (i) the observed score minus the minimum possible score by (ii) the maximum possible score minus the minimum possible score and then multiplying by 100.

Findings

Screening, inclusion and exclusion

Nearly three quarters of the 136 eligible people who were screened for inclusion (n = 100, 73·5%) proceeded to participate. Two specialist wound clinics were the source of the greatest number of participants (n = 38, 38%), and more than one quarter of the sample responded to a study advertisement distributed by a not‐for‐profit wound‐dressing product distributer (n = 28, 28%). The remaining sample (n = 34, 34%) was recruited through professional networking, articles in health professional and consumer group publications and newspaper articles.

The sample was, on average (ave), 64·6 years of age (min. 23 years, max. 95 years; SD 15·44), and half of the sample was female (n = 50, 50%); wound duration was 88·9 weeks on average (min. 4 weeks, max. 676 weeks, SD 128·56). The majority of participants had a lower leg wound (n = 80, 80%), and the remaining wounds were distributed across the head, torso and upper limbs. Participants reported a high level of self‐efficacy (33·9/40) and moderate level of perceived social support (68/100) (Refer Tables 1 and 2). Further information about the characteristics of the sample, out‐of‐pocket wound treatment costs and quality of life has been previously reported 4. Results for the sample of 100 participants have been reported, unless otherwise specified.

Table 1.

Generalised self‐efficacy (n = 99)^*

	Total (n = 99)
Self‐efficacy (sum)
Ave	33·9
Min/max	20–40
SD	4·74

^*Missing data, n = 1.

Table 2.

Social support (n = 100)

		Total (n = 100)
Social support
Emotional/informational support
Ave		29·3
Min/max		8–40
SD		8·5
Tangible support
Ave		15·0
Min/max		4–20
SD		5·2
Affectionate support
Ave		11·6
Min/max		3–15
SD		4·9
Positive social interaction
Ave		11·3
Min/max		3–15
SD		3·8
Scale (0–100)
Ave		68·0
Min/max		0–100
SD		27·2

How people self‐treat chronic wounds

The majority of participants reported conducting wound cleansing, (n = 91, 91·0%), wound dressing removal (n = 88, 88·0%), wound dressing application (n = 88, 88·0%) and assessing for signs of healing and infection (n = 84, 84·0%). Other self‐treatment activities, such as removal of devitalised tissue (n = 40, 40%) and wound imaging (n = 33, 33%), were conducted by less than half the sample; however, it was noted that some activities, for example, application of lower leg compression therapy, would not have been relevant for some participants (Refer Table 3). Nearly half of the sample (n = 46, 46%) was conducting wound treatment daily or more frequently. Wound treatment took an average of 23·7 minutes (min. 1 minute, max. 75 minutes, SD 18·87).

Table 3.

Self‐treatment activities (n = 100)

		Total (n = 100)
Wound treatment activities (%)
Wound cleansing		91·0
Removing a 1° wound dressing		88·0
Applying a 1° dressing		88·0
Assessing for healing/infection		84·0
Arranging supplies/equipment		79·0
Remove dead skin around wound		48·0
Applying tubular bandage		44·0
Applying a light bandage		40·0
Removing dead skin wound surface		40·0
Removing debris wound surface		37·0
Applying a mod‐/high‐comp. band.		36·0
Applying a 2° wound dressing		35·0
Taking a photograph of wound		33·0
Applying padding to leg		30·0
Taking a tracing/other measure		14·0
Recording progress on paper		9·0

When asked to indicate the cleansing solution that had been most recently used, 95 participants responded. One third of these participants (n = 38, 40%) were using one solution, specifically tap water (n = 11), saline (n = 9), antibacterial liquid (n = 6), sterile water (n = 5), soap‐free cleanser (n = 5), soap (n = 1) and thermal water (n = 1). The remainder of respondents (n = 57, 60%) recorded their response as ‘other’. The text responses were appraised and coded, resulting in 33 unique responses. Many participants reported using a combination of cleansing solutions, and often a combination that contained an antimicrobial cleansing solution, for example, ‘saline, soap‐free cleanser and an antibacterial liquid’. Some less‐common cleansing solutions included methylated spirits, peroxide, alcohol swabs, vinegar and flushable toilet wipes.

The majority of participants (n = 89, 89%) were using a primary wound dressing. Silver and iodine dressings (n = 18, 20·2%) and more recently available antibacterial dressings (Prontosan, Flaminal and Sorbact) were commonly used (n = 16, 18·0%). Topical antiseptics (n = 8, 9·0%); Betadine solution (n = 7, 7·9%); and topical antibiotics (n = 6, 6·7%), topical steroids (n = 3, 3·4%) and honey (n = 1, 1·1%) were used by fewer participants in the sample. The remainder of the sample (n = 30, 33·7%) used primary wound dressings that did not have antimicrobial properties. The majority of the 80 participants who had a lower leg wound were using compression therapy (n = 57, 71·2%).

Why people self‐treat chronic wounds

The most commonly selected reason for self‐treating was ‘to be independent’ (n = 58, 58%) and ‘to do the treatment at a time that suited’ (n = 55, 55%) (Refer Table 4). More than one third of participants (n = 38, 38%) reported that their reasons for conducting self‐treatment directly related to the professional care or service that they had previously received. The majority (n = 36) provided free‐text comments, and most (n = 32) indicated that negative experiences with professional care providers and services led to their decision to self‐treat, for example, ‘each nurse that came had different ideas about product and treatment’, ‘my general practice clinic, including a number of Doctors, failed to diagnose cause [of wound] when were aware of history’ and ‘the need to wait weeks for an appointment at the wound clinic’. The remaining participants (n = 4) reported positive reasons, for example, their belief that they ‘could do a better job’ and ‘professional care not needed’.

Table 4.

Reasons for self‐treatment (n = 100)

		Total (n = 100)
Reasons for self‐treatment (%)
To be independent		58·0
To do treatment at time that suits		55·0
Self‐treatment successful before		31·0
Professional care too costly		19·0
Professional care inconvenient		18·0
Wound expected to heal quickly		17·0
Bad experience with professional care		14·0
Care providers had different ideas		14·0
To use the treatment that I wanted		11·0
Professional care not available in my area		9·0
Because of position on body		8·0
Because is less painful		8·0
Same care provider could not come		5·0
Avoid showing wound to anyone		4·0
Self‐treatment suggested by HCP		3·0
Because I can		3·0
Always had same care provider		1·0
Family member is a HCP		1·0
Wound got worse		1·0
Has a nursing background		1·0
HCPs are too busy		1·0

HCP, health care provider.

Support and assistance received to self‐treat

The majority of participants (n = 97, 97%) had seen a health care professional for assessment or advice at some stage during the wound episode. Specialist wound clinic staff (n = 46, 47·4%), doctors (n = 42, 43·3%) and general practice nurses (n = 32, 33·0%) were the most frequently recorded health care professionals. Participants had seen, on average, three health care professionals for assessment and advice. The average time since last seeing a health care professional was 16·4 weeks (min. 0 weeks, max. 572 weeks, SD 68·97). Less than one third of participants reported being supervised by a health care professional at the start of self‐treatment (n = 31, 31%), and fewer (n = 24, 24%) reported being supervised in the most recent 4 weeks. The minority reported being supervised regularly during the wound episode (n = 22, 22%).

Few in the sample (n = 6, 6%) reported having received organised education or training for self‐treatment of chronic wounds (e.g., participating in a lesson led by a health care professional or being given written materials to keep). Those who did report having completed education or training described that the education or training was part of their nurse training (n = 2), was an e‐learning patient education programme for leg ulcer prevention (n = 2), was a first aid course (n = 1) and was part of their work in the wound product industry (n = 1).

More than half of participants (n = 59, 59%) reported that another person had assisted them with their self‐treatment activities during the wound episode. The domestic partner was the person who most commonly assisted (n = 30, 50·8%); other non‐professionals who assisted participants to self‐treat included relatives (n = 14, 23·7%) and friends or neighbours (n = 6, 10·1%).

Discussion

The aim of this study was to investigate how and why people self‐treat chronic wounds and the assistance and support that they receive to self‐treat. The results suggest that the self‐treaters conducted a range of wound treatment activities, that they preferred to self‐treat and that they received limited professional supervision.

How people self‐treat chronic wounds

Chronic wound self‐treaters reported being actively engaged in a range of wound treatment activities, this result mirroring best practice standards 28. There are several results that particularly warrant consideration, and these are the focus of this discussion.

Nearly all participants (n = 91, 91%) reported cleansing their wounds; however, debridement was less common (n = 37, 37%). Given that debridement is required to remove wound biofilm and prevent recurrence 34, self‐treaters may be at a greater risk of this complication, a risk that may be further increased if they are not receiving regular professional care that includes debridement. Given the particular knowledge, training and competency requirements for debridement 34, careful consideration is required to determine the best approach for self‐treaters. The use of products, like Prontosan, to loosen debris in the first instance 35 may be a feasible approach for this group. There is little evidence to support or refute rubbing or swabbing of the wound bed for cleansing 36; however, this approach should be weighed against the potential for pain and detriment to the wound bed.

The use of combinations of cleansing solutions and the high use of antimicrobial solutions (singularly or in combination with other solutions) demonstrated the tendency for self‐treaters to mix their approach and to use cleansing solutions as a strategy to address microbial burden. This was also the case for primary wound dressings, where those that targeted microbial burden were the most commonly used (n = 59, 66·3%).

High use of antimicrobial wound dressings has been identified in the auditing of domiciliary nursing care recipients 37 and among self‐treaters of acute wounds 19; however, the high use of antimicrobial solutions has not. A better understanding of the reasons for antimicrobial solution and dressing selection is required given the growing appreciation of the potential for antibiotic resistance 38 and the over‐prescribing of antimicrobial therapy in wound care 39, 40.

Nearly half of self‐treaters (n = 46, 46%) treated their wounds daily or more often. It may be that some wounds required daily or more frequent treatment; however, this is unlikely to be the case for nearly half of the sample. The reasons for this finding may be that highly absorbent dressings were not used (for lack of knowledge about absorbent dressings, a dislike of wearing full and potentially heavy dressings or wound dressing cost) or there was concern about wound infection and therefore a desire to observe the wound regularly. It may have been that participants were not aware that leaving wound dressings in place longer may prevent trauma and minimise the risk of infection and pain 41.

Why people self‐treat chronic wounds

Independence was the most cited reason why people self‐treated (n = 58, 58%); therefore, this group was willing to self‐treat, irrespective of whether or not their self‐treatment arose from positive or negative experiences with health care providers. The high level of self‐efficacy in this sample may be one factor that contributed to this independence, and this has theoretical foundations 29. Alternatively, it may be that self‐treatment became more acceptable over time, a situation that is reported to occur in other areas of chronic disease self‐management 42. Our study reported self‐efficacy among people who experienced active chronic wounds, building on earlier research that has focused on self‐efficacy and leg ulcer prevention behaviours 43. It would be beneficial if health care providers could determine the individuals' level of perceived self‐efficacy to identify whether it may be an enabler or barrier to self‐treatment success.

The second most cited reason why this group self‐treated was to conduct wound treatment at a time that suited them (n = 55, 55%), suggesting that the inconvenience associated with receiving appointment‐based professional care caused dissatisfaction. Patient satisfaction with community‐based wound care services has not been published in Australia, and the situation is similar in the UK, although metrics associated with pressure injuries in acute care have been routinely collected in both regions over recent years 44, 45.

It would be advantageous if the future evaluation of patient satisfaction with wound care in the community setting included metrics for responsiveness and quality of care to optimise the patient's engagement with health care services. Of note, given that the reasons why people self‐treat are mostly positive, the benefits of a self‐care approach may remain influential in the person's decision to self‐treat regardless of satisfaction with care.

Support and assistance received to self‐treat

Although the majority of self‐treaters in our study had seen a health care professional for advice, this did not reflect a high level of professional support as an average of 16·4 weeks had transpired since self‐treaters had last seen the health care professional. It is well established that education and support is required for people to effectively self‐manage chronic health conditions 42. Nearly all self‐treaters involved in our study (n = 94, 94%) had never received formalised education or training about chronic wound self‐treatment, and in the case of the few who reported that they had, the relevance of the content to self‐treatment of chronic wounds, as it was defined in our study, was not clear. Furthermore, the majority of self‐treaters did not receive regular supervision of their self‐treatment practice. Observation of self‐treatment practices must be part of the care provided to people who self‐treat; otherwise, good practices cannot be recognised, and poor practices cannot be identified and corrected.

More than half of the sample had assistance with self‐treatment on occasion (n = 59, 59%), and most often, this assistance was from a domestic partner. This is unsurprising given that the role of informal carers in providing wound care has been established 44 and the moderate level of social support reported by our sample. The positive effect of informal carers on chronic disease management can include improved treatment adherence and improved care recipient well‐being 44; however, for the carer, there may be a negative effect on mental and physical health 45. The need for targeted investigation of the involvement of informal carers in wound management has been identified 46.

Limitations

A representative sample was not sought, and non‐English‐speaking people were excluded; therefore, generalisations should be made with caution. Response bias associated with self‐reporting should be considered.

Conclusion

Chronic wound self‐treaters conduct the basic activities required for wound treatment. Areas for further investigation in this group include wound cleansing practices, selection of cleansing solutions and wound dressings, debridement and frequency of wound treatment. Efforts to improve patient satisfaction with professional care are required to promote a shared‐cared care model for those who self‐treat, or who wish to self‐treat. This may also help to prevent disengagement from health care services. Self‐treaters would benefit from standardised education to optimise self‐treatment practices and closer supervision of their self‐treatment practices by health care professionals. Evaluation of the effectiveness of self‐treatment on wound‐healing, symptom control and well‐being is also required.