Elizabeth Chapman

Interpretative Phenomenological Analysis and the New Genetics

This article offers an introduction to the use of interpretative phenomenological analysis (IPA) to conduct research on psychological and social issues in the new genetics. Some key methodological points in the employment of IPA are highlighted. The article examines some of the important issues for health psychologists that arise following advances in new genetic technologies and introduces the articles in this special issue. The article discusses the particular contribution that IPA can make to research in health psychology generally, and to the new genetics in particular.

Ethical Dilemmas in Testing for Late Onset Conditions: Reactions to Testing and Perceived Impact on Other Family Members

This paper examines some of the ethical dilemmas that arise when testing for the late onset, untreatable condition of Huntington disease (HD) specifically now that technology allows us to test younger generations of the family for the mutant gene. Drawing on interview data from families with Huntington disease, the reactions to testing and perceived impact on other family members are considered. These are discussed in the light of the possible lowering of the age of test applicants. This potentially raises problems for a younger generation as they are confronted with reproductive decisions that the older generation did not have to face. It also means that individuals have the prospect of living with knowledge of a future illness for much longer.

The Social and Ethical Implications of Changing Medical Technologies: The Views of People Living with Genetic Conditions:

This article presents empirical data on subjective levels of health and quality of life for individuals with early- or late-onset genetic conditions. Twelve adults with an early-onset condition (cystic fibrosis) and 12 adults with a late-onset condition in the family (Huntington’s disease) participated in semi-structured interviews. Questions investigated perceptions of the body, quality of life and views on medical technology and testing. Transcripts were thematically analysed using a qualitative methodology (interpretative phenomenological analysis). The article focuses on the superordinate theme of ‘What is a life worth living?’. Different emphases in judgements and definitions of quality of life were uncovered. At the same time the article emphasizes the convergence between the two groups in terms of overall views of quality of life and confirms that the voices of people living with genetic conditions should form part of wider bioethical debates arising from such advances.

Conceptualisation of the body for people living with HIV: issues of touch and contamination

This article outlines the main findings from an in-depth analysis of the body and touch for people living with HIV. The study used a specialised HIV body image chart and a questionnaire that assessed different aspects of touch interactions. Results, in a longitudinal design, showed that the 18 HIV-positive participants perceived their bodies more negatively than the 15 HIV-negative supporters (control group). Participants in the HIV-positive group also expressed a greater desire for more physical contact than participants in the control group. Comparisons between ‘the body now’ and ‘the body before HIV’ showed up significant differences on the construct that assessed feelings of contamination. This construct was also significant in comparisons between HIV-positive and HIV-negative groups. These findings are interpreted through discussions of stigma, the internalisation of widespread negative representations of the HIV-positive body and untouchability.

Patients' knowledge of cystic fibrosis: genetic determinism and implications for treatment.

This paper uses the self-regulation model of illness perceptions (Leventhal et al., 1984) to consider the implications of different ways of thinking about the causes of illness. The relationship between anxiety/depression and knowledge or denial of illness is also considered. These issues are explored using adherence to treatment in cystic fibrosis (CF) as an example. Twenty-six CF patients took part in semistructured interviews and completed a standardized anxiety and depression scale (HAD, Zigmond and Snaith, 1983). Interview data were analyzed using Interpretative Phenomenological Analysis (Chapman and Smith, 2002). HAD data were analyzed using SPSS. The respondents displayed widely differing levels of knowledge of their condition. Some deterministic comments were also reported. Findings are discussed in relation to the information that physicians might provide to patients and families in the light of increasing knowledge about genetics in society and the genotyping of individuals with genetic conditions specifically. Any important gaps in patient knowledge could usefully be discussed at transition from pediatric to adult care and issues relating to control and genetic determinism discussed with the patients individually.

Difficult Decisions: Social and Ethical Implications of Changing Medical Technology

Objectives: A primary objective of this paper is to present data on subjective perceptions of health and quality of life in individuals living with early- or late-onset genetic conditions (cystic fibrosis, CF, and Huntington’s disease, HD, respectively). The paper will also discuss the social and ethical dilemmas raised by advances in reproductive and testing technology, consider the different emphases in definitions of quality of life, and speculate on criteria used to make reproductive decisions following prenatal testing. Methods: Adults suffering from CF and HD attending two regional centres in the UK took part in semi-structured interviews between late 1999 and summer 2001. Self-report data on how a specific body image is constructed were also collected. Interviews were analysed using thematic qualitative analysis, and the body data were analysed using SPSS. Results: Qualitative analysis uncovered themes relating to the question of how we value life, and exposed broad ethical dilemmas arising from advances in testing and treatment technology. These data are supported by findings from a body chart analysis that highlight a discrepancy between the quality of life experienced by this group of respondents and the way they believe the wider public perceives them, particularly in reference to pain. Conclusions: Although some of the data support previous findings, such as the disability paradox, other voices contradict this view. Due to their unique experiences, the accounts of individuals currently living with genetic conditions should be considered in the wider bio-ethical debates.

Challenging the representations of cancer pain: experiences of a multidisciplinary pain management group in a palliative care unit.

OBJECTIVE This article describes how a Multidisciplinary Pain Management Group was set up in a palliative care unit, and outlines the ways that the group works with different patients. We place these comments in the context of the wider representations of pain. METHODS Our observations of patients seen by the multidisciplinary team. RESULTS We tentatively propose that where the patients pain has certain characteristics it may require a different approach. Patients who are older, with a lengthy treatment history, may require a different input than younger patients, who may have a number of factors that further complicate their experience of pain. We use our extensive experience with mesothelioma patients to draw a further important distinction between this patient group and other patients. SIGNIFICANCE OF RESEARCH Our observations suggest the need to allow sufficient time for intensive psychological work to be done with mesothelioma patients in order for pharmacological interventions to be effective.