Clinical encounters with different illness realities : qualitative studies of illness and restructuring of illness meaning among two cultural groups of female patients in a multicultural area of Stockholm

Abstract

Background: Mental health care in Sweden encounters a multicultural population. Meaning given to illness may differ between patient, family and caregiver and this affects the clinical encounter and outcome of treatment.

The general aim of this thesis is to explore, understand, and describe how a group of Swedish and a group of Turkish-born women, assessed as somatizing by their caregivers, and in contact with local health care in Western Stockholm, gave meaning to their illness. Additional aims are to explore participants' restructuring of illness meaning, caregivers' experiences and meanings of encountering patients using a bodily idiom for emotional distress, in a multicultural milieu, and how caregivers imparted their professional agenda of illness meaning.

Methods and results: The thesis consists of five explorative qualitative studies and one paper discussing methodology. Data were collected 1997-2001. Study I explores structures of illness meaning among 8 Swedish-born women. Data were collected via 25 interviews. Some data were collected to reflect the caregivers' professional opinions. Study II explores structures of illness meaning among 10 Turkish-born women. Data were collected via 29 interviews. Some data were collected to reflect the caregivers' professional opinions. Results of Studies I and II describe illness expressions, healing strategies, meanings, and initial differences in illness meaning between participants and caregivers, caregivers' introduction of a "psychological language" of distress, and participants' efforts to grasp their caregivers' meaning.

Study III explores restructuring of illness meaning among the 10 Turkish-born women from Study II. Data were collected by a secondary analysis of data from Study II and 8 new interviews. Results describe restructuring to include loss of meanings, shifts in expressions and healing strategies, and a push towards restructuring illness into a psychological or psychiatric framework. Restructuring was in many ways a disruptive experience and participants tried to bridge gaps between perspectives. In this, they perceived poor support from their social context.

Study IV explores restructuring of illness meaning among the 8 Swedish-born women from Study I. Data were collected by a secondary analysis of data from Study I and 7 new interviews. Results describe restructuring to include two trends, firstly an acceptance of a psychological language of distress and secondly paying attention to stress and demanding work conditions. Restructuring was not uncomplicated and participants tried to bridge gaps between perspectives. In this, the social context was important.

Study V explores caregivers' experiences and meanings of encountering patients using a bodily idiom for emotional distress in a multicultural milieu and how caregivers; imparted their professional agenda of illness meaning. Data were collected via 7 focus group interviews. Results describe caregivers' experiences and meanings and that, in imparting their professional agenda, caregivers lacked support from organisational structures and clinical models for adapting work to the multicultural population and for treating mental ill health in primary care. Paper VI highlights the experiences, and reviews the literature, of using focus groups as a qualitative method in transcultural psychiatric research.

Discussion and conclusion: From the results of Studies III & IV, I suggest that Antonovsky's Sense of Coherence Concept may be relevant when considering the restructuring of illness meaning, and that constructing coherence between experience, expression, and past and new illness meanings, may be significant for patients' recovery. From the results of Studies I-V, from a patients perspective, I wish to formulate the following hypotheses for the clinical encounter of emotional distress and mental illness in multicultural milieus: 1) Constructing a sense of coherence between experience, expression, past and new meanings given to illness, may be significant for patients' recovery. 2) Regarding clinical transaction of meanings, for the disruptive experience of illness, restructuring patients' illness meaning needs to be carried out in such a way as to facilitate for the patient to construct a sense of coherence between her/his illness meaning and the caregivers' medical framework. 3) The individual illness reality of the patient needs to be given an integral and important role as a collaborative resource alongside the medical framework.

Implications: For the clinical encounter, results stress the significance of becoming acquainted with patients' meanings associated with illness experiences. For caregivers, in multicultural milieus, results argue for the importance of support from organisational structures and shared formulated models for adapting their work to the diversity of the population and for treating mental ill health in primary health care. For research, results point to the significance of further studies on interaction between health care and individuals and different social/cultural groups as well as on how people make sense of, use, and cope with the clinical encounter for recovery. This is of special importance for patients in an immigration situation as immigration involves being uprooted, dislocated and relocated.