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Investigating the effects of living with a pressure ulcer

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VOL: 98, ISSUE: 36, PAGE NO: 34

Christine Bush, DipHE, FETC, RGN, is senior community staff nurse, Mid Hampshire PCT

Pressure ulcers are a significant health problem in the USA, not only because of financial cost but also in terms of human suffering, pain, disfigurement, loss of productive time and change in body image. This is also an important and relevant issue in the UK, as it has been estimated that the financial cost to the NHS may be as high as £750m per year (West and Priestly, 1994). Although previous studies have identified signs and symptoms, prevalence and incidence through quantitative research, the impact of a pressure ulcer through qualitative research had not previously been determined. This article discusses the relevance of qualitative research in general, and focuses on a qualitative study (Lagemo et al, 2000) investigating the experiences of people with existing or healed pressure ulcers.

Qualitative research

The aim of qualitative research is to explore and understand people’s experiences, feelings and beliefs and to make statements about how they interpret and structure their lives (Holloway and Wheeler, 1996). The findings from qualitative studies can increase our understanding of a phenomenon in a particular situation and are not generalised in the same way as quantitative studies (Polgar and Thomas, 2000). However, understanding the meanings of a phenomenon in a particular situation can be applied more broadly and is useful in understanding human experiences such as pain, caring, comfort, stress, the experience of bereavement and the quality of life with chronic illness (Burns and Grove, 1999; Polit et al, 2001).

There is a variety of approaches to qualitative field research, and they take somewhat different positions concerning how data should be collected and analysed (Polgar and Thomas, 2000). One of these approaches is phenomenology, which is appropriate when researching areas of health where data is rich but difficult to document and describe and is consequently under-researched (Polit et al, 2001). The focus of phenomenological inquiry is what people experience in regard to a phenomenon (descriptive phenomenology) and how those experiences are interpreted (hermeneutics) (Polit et al, 2000). Its aim is to describe accurately the ‘lived experiences’ of people. The phenomenon being studied is described as it is experienced, without theories being expressed about its cause (Ploeg, 1999).

The study

The stated purpose of Lagemo et al (2000) was to describe, understand and give meaning to the experience of living with a pressure ulcer, using a descriptive phenomenological methodology.

Nonprobability, purposive sampling was used to consciously select participants who had experienced the phenomenon to be investigated and who had the ability to share the experience in a thoughtful and reflective way (Polit et al, 2001), using predetermined criteria relevant to the research question (Holloway and Wheeler, 1996). Eight adults (age range 27-52) were included who had pressure ulcers from stage 2 to stage 4, including some with surgical flap reconstructions. Four currently had a pressure ulcer and four had previously had a pressure ulcer that had healed.

The principle of informed consent is important in any type of human research (Polit et al, 2001), and approval in this study was obtained from the University of North Dakota Institutional Review Board for review of human subjects. Potential subjects also signed written consent forms. Rigour was maintained through attention to auditability, credibility and fittingness.

Method

Methods of data collection need to allow the researcher to become immersed in the world of the research participants in order to understand their interpretations of events (Holloway and Wheeler, 1996). Interviewing provides a situation where the participants’ descriptions can be explored, illuminated and gently probed (Wimpenny, 2000). As the researchers knew little about the topic in question and wanted to throw light on the participants’ perceptions of the world (Polit et al, 2001), unstructured interviews were held with each participant. These were conducted in a private setting of the participant’s choice.

Participants were asked to respond verbally to the following: ‘Describe your experience of having a pressure ulcer. Share all the thoughts, perceptions and feelings you can recall until you have no more to say about this experience.’ Three probes were used to elicit additional data: ‘Tell me more’, ‘What was that like for you?’ and ‘Please say more about this experience’.

Interviews continued until no new themes or essences were emerging and it was felt that the data adequately represented the lived experience of having a pressure ulcer (Ploeg, 1999). As tape recordings are thought to be useful for capturing the mood or strength of feelings on issues raised by participants (Marrow, 1996), all interviews were audiotaped and transcribed verbatim. However, non-verbal behaviour such as shrugging or hand gestures is ignored but is as important to communication as the words themselves (Burns and Grove, 1999). In this study the researchers maintained field notes to include ideas, feelings or responses that emerged during data collection. Data analysis involved reading the transcripts, extracting significant statements, formulating meanings and categorising the statements into themes.

Results

Seven major themes and sub-themes which encompassed the original research questions were identified from the participants’ descriptions, from which the essential nature of the experience of living with a pressure ulcer were presented. These themes were:

- Perceived aetiology of the pressure ulcer;

- Life impact and changes;

- Psychospiritual impact;

- Extreme painfulness associated with the pressure ulcer;

- Need for knowledge and understanding of pressure ulcers;

- Need for and effect of numerous stressful treatments;

- The grieving process.

These themes were then described and illuminated by numerous quotes from the participants.

Conclusions and discussion

The major findings were that pressure ulcers had a profound impact on the lives of the participant’s physical, emotional and social life. Additionally they found that those with a stage 4 pressure ulcer and a flap repair and/or those with a spinal cord injury inevitably experienced the grieving process in some form.

The researchers in this study felt that, in order to provide high-quality, individualised care for the patient with a pressure ulcer, it was necessary to gain an insider perspective on the shared experience of the participants. This would enable them to gain a better understanding and give meaning to the experience of living with a pressure ulcer. The descriptive, phenomenological approach was certainly the most appropriate.

Sampling is the process of selecting a portion of the population to represent the entire population (Ploeg, 1999), but Thompson (1999) argues that not all research designs are concerned with generalising from a sample to a population of people. This is true of a qualitative study, in which sampling decisions are made for the explicit purpose of obtaining the richest possible source of information to answer the research questions (Ploeg, 1999; Baxter, 2001).

Although nonprobability sampling designs are convenient and economical, there is the potential for bias, as it is highly unlikely that the sample will represent the population adequately (Holloway and Wheeler, 1996). However, the focus in this study was not on generalisation, but on gathering rich in-depth, descriptive data and, by using the nonprobability, purposive method of sampling, the researchers used the most appropriate sampling approach.

This was an interesting, well-written paper and clearly described the lived experience of having a pressure ulcer. The report was well organised, with a logical progression through the research process. A particular strength was the liberal inclusion of quotes to illustrate themes and provide rich slices of data.

Qualitative methods have been criticised in the past for lacking rigour, but this has been because rules developed to judge quantitative studies have been used to judge qualitative studies (Burns and Grove, 1999). Sandelowski (1986) suggested that the rigour of a qualitative piece of research should be assessed by considering its auditability, credibility and fittingness; these three factors were clearly demonstrated in this study. There are many aspects to credibility, but Cutliffe (1999) felt that the most useful indicator of the credibility of the findings produced was when the practitioners and the readers of the theory viewed the findings of the study and regarded them as meaningful and applicable in terms of their experience.

Phenomenological research cannot claim to represent the universal lived experience of all patients with pressure ulcers and spinal cord injuries, as it involves in-depth study of the experience of specific participants (Paley, 1997). The researchers agree, but state that, although the meaning of the experience has unique and personal features for each individual, the experience can have similar phases for many. This was supported by findings from an extensive literature review, relevant to the emergent findings, of patients with chronic illnesses or life-threatening diagnoses. The researchers also observed that the participants had a great deal to learn about self-care and prevention of further ulcers, including why healing is often a lengthy process and why nutrition and hydration are crucial. As a result, they felt that further in-depth descriptive research was required.

Implications of the study’s findings for practice were addressed with a discussion of the importance of adopting a holistic perspective to patient care and attempting to understand the illness from the patient’s perspective.

Phenomenology as a method of research offers nurses an opportunity to describe and clarify phenomena important to practice, education and research. In the area of pressure ulcers, much emphasis has been placed on the physical manifestations and treatment available, but it is imperative that more is learnt about how chronic illness affects people on an individual level. These findings offer nurses a deep understanding of the phenomenon that they can apply in their interactions with people living with chronic illness.

** This was written as part of the tissue viability research and development module, part of a tissue viability degree, at the University of Hertfordshire

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