Applying the Pictor technique to research interviews with people affected by advanced disease

Headnote

Abstract

Aim To outline some of the challenges facing people affected by advanced disease who want to participate in research interviews, and to present Pictor, a method that can help manage some of these challenges.

Background Patients and lay-carers may have many issues that affect their ability to participate in qualitative research interviews. These issues can include the physical effects of disease, its treatments and emotional distress.

Data source An ongoing study exploring experiences of advanced disease when multiple agencies are involved.

Review methods The Pictor technique involves the creation of a chart that supports the exploration of the participant's experience of roles and relationships. The technique has previously been used with health professionals and this paper reports on its use with lay-participants.

Discussion The technique accommodates some disease-related difficulties which helped people with advanced disease to reflect on their experiences of primary care service provision. Participants then communicated these experiences with the researcher.

Conclusion Pictor is a tool that can help manage some of the difficulties experienced by people with advanced disease who are participating in research interviews. This has benefits for researchers and participants.

Keywords Pictor, interviews, qualitative methods, palliative care, advanced disease

Introduction

PEOPLE AFFECTED by advanced disease are increasingly the focus of research, policy and service development. Terminology in this area is not always well defined (Payne et al 2008), so research involving people with advanced disease may be considered part of palliative, supportive, end of life or disease-specific research.

'Advanced disease' is referred to in the Gold Standards Framework (GSF) prognostic indicator guidance (GSF 2008, Thomas 2010), which advises on identifying individuals who have advanced disease and who might be in their last year of life.

Researchers face many issues when inquiring into the experiences of people who have advanced disease and we need to find the best methods to enable participants to share their experiences effectively, while maintaining ethical integrity (Dean and McClement 2002).

Historically, qualitative research involving people with advanced disease has been criticised over its ethical implications and potential benefits (Gysels et al 2008). However, qualitative research is important if we are to develop a better understanding of service-user experiences - an understanding that is increasingly advocated in UK palliative and cancer-care policy (Seymour and Skilbeck...