EUROPEAN PRESSURE ULCER ADVISORY PANEL

Living with a Pressure Ulcer: A Study Progress Report
Prepared by Carol Dealey on behalf of the Research Team

In 2003 the EPUAP trustees decided to support a pilot study into the experience of patients with pressure ulcers. The following report summarises the background to this project along with the progress made to date.

Research Team

Dr Sue Bale (UK)
Dr Denis Colin (France)
Carol Dealey (Project Leader, UK)
Dr Tom Defloor (Belgium)
Alison Hopkins (UK)
Fran Worboys (UK)

This pilot project is being funded by the EPUAP. The purpose of this report is to bring members up to date with our progress.

Background to the study

Little is known of the impact of pressure ulcers on an individual’s quality of life. Langemo et al (2000) undertook a phenomenological study in which they reported that pressure ulcers have a profound impact on the lives of the sufferers. The authors suggest that a larger study is required to obtain a greater understanding of the patient’s experience of living with a pressure ulcer. Their sample size was small (eight respondents), all of whom were under the age of 55 years. Fox (2002) also undertook a phenomenological study of the experience of five patients who had had grade 4 pressure ulcers that were healed or nearly healed. Again the patients were relatively young with an age range of 30 – 64 years. This is by no means representative of patients with pressure ulcers as a whole as the majority have been found to be over 65 years of age in a number of surveys. For example, Whittington et al (2000) surveyed 17,560 acute patients and found an incidence rate of 7%, of these 73% were over 65 years in age. Also the majority of patients in Langemo et al’s study (5/8) had spinal cord injury (SCI) and it was difficult to separate the impact of SCI from the impact of the pressure ulcer (Langemo et al, 2000).

Research Question

What is the lived experience of patients with pressure ulcers?

Study Plan

An initial pilot study will be undertaken in order to identify any weaknesses within the research protocol, especially the issue of having a number of people conducting the interviews and issues of translation from one language to another. The information obtained will be used to support a grant application for the main study In the main study, healthcare professionals from countries across Europe who care for patients with pressure ulcers will be invited to participate. Each healthcare professional will undertake to interview between 3–5 patients who meet the study inclusion criteria. Prior to undertaking the interviews, each participant will receive standardised training on the study protocol and interview skills. All data generated from the interviews will be sent to a central data collection point for analysis.

Methods

Overall study design

The methodology to be used for this study is phene-monology. This is a philosophy initially developed by Brentano (1838–1917) and Stumpf (1848–1936) who saw it as a way to describe human experience as it is lived (Jones, 2001). Thus, phenomenology seeks to study the nature of phenomena as people experience them, rather than find causal relationships (Parse, Coyne and Smith, 1985). The ideas developed by Brentano and Stumpf have subsequently been developed by a number of theorists.

A phenomenological approach allows the exploration of an individual’s perception or account of an event (Smith 1995). The unstructured interview is a common tool for generating phenomenological data and it assumes that realities beyond the interview can be expressed. However, it is important to recognise that the language of interviews can fracture the individual’s story (Miller and Glassner 1997), thus care must be taken with the development of the interview schedule and the technique used. Probing techniques will be employed to ensure mutual understanding of meaning.

This study will generate rich data and the chosen analytic technique will support the researchers’ beliefs that the unstructured interview will reflect on the individual’s inner world. Thus for analysis, this study will use Interpretative Phenomenological Analysis (IPA) as described by Smith, Jarman and Osborn (1999). The structure offered by IPA will enable the identification of themes and connections, searching for patterns and tensions.

There are a variety of philosophical approaches to phenomenology. This study will utilize the Heideggarian hermeneutics branch where the goal is to study how people interpret their lives and make meaning of what they experience (Cohen et al 2000). Unlike the Husserl branch of phenomenology, Heideggarian philosophy accepts that the data generated by the participant is fused with the experience of the researcher. This means that the views of the researcher cannot be bracketed off, thereby recognising that no researcher can come to the study with suspended preconceptions. Thus within Heideggarian philosophy the researcher is an active participant ensuring the importance of the role of reflexivity within the analysis.
The status of the literature review also reflects this philosophy. It is a common misconception that the researcher should not begin the study with the literature review (Cohen et al 2000). This is linked to the Husserlian view on bracketing, attempting to prevent contamination of the analysis by the researcher. Within the Heideggarian approach, the role of the researcher and importantly their knowledge and experience, are accounted for. In addition, the research question should arise from a personal or professional question about the phenomena and/or develop from previous research in order to fill gaps in our knowledge.

In order that the study will uncover the participants view on their world, unstructured interviews will be used. This method assumes that what the participant says has some significance to them and that there is a link between this and their beliefs (Smith 1995). Jasper (1994) suggests that the researcher requires very specific interview skills in order to prevent the data from being contaminated, for example, by asking leading questions. It is crucial that the participant is allowed to tell their story in their own way. The interviewer can easily fracture this by the inappropriate use of questions or inattentive listening. The skilled use of prompts is essential if shared meanings are to be obtained from the interview process. Prompts allow exploration and clarification if used sympathetically.

Carpenter (1995) has described some of the terms used in phenomenological research: essences, intuiting and reduction. Essences are the elements or basic units of any phenomena. They can be used to build an understanding of a phenomenon. Intuiting is the process of developing an accurate interpretation of the phenomenon that is being investigated. Reduction is the process of isolating the essences of a phenomenon from any preconceived ideas. The researcher must bracket any existing knowledge, that is, put it to one side, in order to remain neutral with respect of beliefs about a phenomenon. As a result, the essential truths of a phenomenon, and not someone’s beliefs about it can be presented. Such skills include the use of reflection, clarification and conveyance of interest. She further discusses the benefits of practising interview and discussion techniques.

As with any research, academic rigour is essential to the credibility of the findings. Rose et al (1995) have discussed rigour in phenomenology in terms of credibility and consistency. Credibility or trustworthiness are alternative terms for validity within qualitative research and, within phenomenology, relates to whether the researcher has truly presented the essences of a phenomenon. As discussed previously, the researcher cannot be a neutral observer, but is an explicit part of knowledge production (Flick 1998). Reflexivity and self-awareness can be exploited and used as insight (Lipson 1991), thereby reducing subjectivity.

Two main concerns with a multi-centre, pan-European phenomenological study, are the issues of consistency and translation. These have been addressed through the training of the researchers and the provision of a central analysis for the data. Training includes both the philosophical underpinning of the study and the use of the unstructured interview technique. Where English is the target language, the researcher verifies the translated transcripts for accuracy. Finally, the themes arising from the texts are verified with the researchers.

IPA also offers a structure that reveals the analytic process, a transparency that adds to the credibility of this study.

Study Sample

A purposive sample of patients will be recruited. Patients will be included in the study if they meet the following criteria:

• An existing grade 3 or 4 pressure ulcer of greater than one month in longevity.
• The patient is able to talk about the experience of living with a pressure ulcer in the same language as the interviewer
• The patient is over 65 years of age

It was considered that if a pressure ulcer healed within a month it was not likely to have a major impact on the life of the sufferer, although it must also be recognised that many pressure ulcers of this severity are likely to take much longer than a month to heal.

Data Collection

The patient interview will be conducted in a private setting and the interview audiotaped and transcribed verbatim. Basic demographic data (Appendix 1) will be collected followed by a semi-structured interview using the interview schedule in Appendix 2.

Data Analysis

The demographic information will be analysed using frequencies and compared with data collected in the pilot European Pressure Ulcer survey undertaken by EPUAP to determine if the sample is reasonably representative of the known data on patients with pressure ulcers. Analysis of the interviews will follow the framework offered by Interpretative Phenomenological Analysis (IPA) and will introduce system and rigour. The analysis has four stages:

1. The transcript is read several times. Comments, insights, possible interpretations are documented down the left hand margin. The right hand margin is used to document emerging themes and key words that may capture the essence of the paragraph. They can be directly from the discourse or from theoretical concepts.
2. Review of the emerging themes for connections, creating some order. Some may be sub-ordinate, others core themes. Their place within the text must be documented.
3. A table of themes is developed accompanied by quotes from the text.
4. This analysis is continued with the other interview texts and thus IPA is a cyclical process. Previous analysis can inform on the next, but themes will not be dropped. Any new themes will be taken to the previous text to ascertain their relevance.

Ethical Issues

Ethics approval for this study will be sought according to the regulations in each participating country.

Progress to date – the Pilot Study

A pilot study has been undertaken at the following centres: University Hospital Birmingham NHS Trust, Wound Healing Research Unit, Cardiff and Tower Hamlets PCT, UK; University of Gent, Belgium. Each centre has recruited 2 patients and the transcripts are being analysed. The steering group will be meeting in May to discuss the findings and prepare a report for EPUAP Trustees and for presentation in 2004 at the World Conference.

References

Caelli K (2001) Engaging with phenomenology: is it more of a challenge than it needs to be? Qualitative Health Research, 11 (2) 273–281.
Calaizzi PF (1978) Psychological research as the phenomenological views it. In eds. Valle RS, Kira M. Existenetial-Phenomenological Alternatives for Psychology, Oxford University Press, New York, pp 48–71.
Carpenter DR (1995) Phenomenological research approach in: eds. Streubert H, Carpenter DR. Qualitative Research in Nursing, JB Lippincott Company, Philadelphia pp 29–49
Cohen MZ, Kahn DL, Steeves RH (2000) Hermeneutic Phenomemnology Research: A practical Guide for Nurse Researchers. Sage Publications, London.
Flick U (1998) An introduction to qualitative research. Sage, London.
Fox C (2002) Living with a pressure ulcer: a descriptive study of patients’ experiences. J of Wound Care, 11 (6) 10–22.
Jasper M (1994) Issues in phenomenology for researchers of nursing. J of Advanced Nursing, 19: 309–314.
Jones A (2001) A condensed history of the phenomenology: the first and second phases from Franz Brentano to Hans-Georg Gadamer. Nurse Researcher, 8 (4) 65–75
Langemo DK, Melland H, Hanson D, Olson B, Hunter S (2000) The lived experience of having a pressure ulcer: a qualitative analysis. Advances in Skin and Wound Care, 13 (5) 225–235.
Lipson B (1991) The use of self in ethnographic research. In: Morse J (ed), Qualitative Nursing Research, Sage, London.
Lowes L, Prowse MA (2001) Standing outside the interview process? The illusion of objectivity in phenomenological data generation. International J of Nursing Studies, 38: 471–480.
Miller J and Glassner B (1997) The ‘inside’ and the ‘outside’: finding realities in interviews. In Silverman D, Qualitative Research: Theory, Methods and Practice. Sage, London.
Parse RR, Coyne AB, Smith MJ (1985) Nursing Research: Qualitative Methods. Brady Communications Company Inc., Bowie, Maryland, pp 15–25.
Rose P, Beeby J, Parker D (1995) Academic rigour in the lived experience of researchers using phenomenological methods in nursing research. J of Advanced Nursing, 21 (6) 1123–1129.
Smith J (1995 ) Semi-structured interviewing and Qualitative Analysis. In: Smith JA, Harre R, Van Langengrove L (eds) Rethinking methods in Health Psychology, Sage, London.
Smith JA, Jarman M and Osborn M (1999) Doing Interpretative Phenomenological Analysis. In: Murray M and Chamberlain K (eds) Qualitative Health Psychology: Theories and Methods. Sage, London.
Whittington K, Patrick M, Roberts JL (2000) A national study of pressure ulcer prevalence and incidence in acute care hospitals. J of Wound Ostomy and Continence Nursing, 27 (4) 209–215.

Appendix 1

Demographic Data

• Patient age, gender and diagnosis.
• Where pressure ulcer developed, e.g., hospital.
• Pressure ulcer grade, position, longevity, past and current treatment including pressure redistributing equipment.

Appendix 2

Semi-structured Interview Schedule

Title: Living with a pressure ulcer

A loose framework will be followed but will be tailored to the individual’s response. The interviewee may answer some questions without being asked, so not all the questions will be relevant.
Suggested prompts: “Tell me more”, “Can you explain that to me?”, “Can you give me an example of that/ what you mean?”, etc.

• You are part of this study because you have a pressure sore. Is this the word you would use, or would you use another term? (terminology, shared meaning)
• Let us start by you telling me briefly about yourself. (gentle introduction)
• What is it like having a pressure ulcer? (lived experience. Listen for and clarify pain, treatment, relationships, social, equipment issues)
• Do you know what your pressure ulcer/sore looks like?
• How would you describe it?
• What is the treatment like? How long does it take? [how it feels when examined]
• How does it make you feel about yourself? or Does having a sore make you feel any different?
• Has it made any difference to you? [if Yes, in what way, describe further – if No, why not]
• Do you know how it happened/occurred? [how does that make you feel?]
• Is it (the sore) something you would talk about with anyone?
• Have you had any sort of information on it?
• What do you think will help it to heal?
• Could you suggest 3 things/ anything that would improve your experience here?
• Can you tell me whether you think anything will change for you once you go home? (equipment, planning, daily life, relationships)
• This study is about understanding people’s experience of living with pressure ulcers. Is there anything that I have not asked you but it would be useful for me to know?