Perceived expressed emotion in the illness narratives of individuals with chronic gastrointestinal disorders

Tetiana Pastryk

Volyn Medical Institute, Ukraine

Zoia Kireieva

Odesa 1.1. Mechnikov National University, Ukraine

Nataliia Kordunova

Lesya Ukrainka Volyn National University, Ukraine

Mahdalyna Lyla

Hrihorii Skovoroda University in Pereiaslav, Ukraine

Received January 11, 2021; Revised April 8, 2021; AcceptedMay 2, 2021

Abstract

expressed emotion gastrointestinal disorders

The prognostic value of factors enhancing the health-related quality of life in individuals with chronic gastrointestinal (GI) disease has renewed the interest in the family environment as a robust predictor of chronic disease outcome (Ludvigsson et al., 2017; Sandler et al., 2002). In addition, recent developments in the family environment in disease management have heightened the role of Expressed Emotion (EE). EE is a well-validated measure of the familial emotional climate of individuals with mental and physical conditions that examines carers' critical, hostile and emotionally over-involved attitudes towards a family member with a condition (Brown et al., 1972). Notwithstanding that most studies on EE have focused on family settings of service users with psychotic disorders, recent findings indicate a poor impact of EE on disease management in individuals with a medical condition (Wearden et al., 2000). Recently, considerable literature has grown up around the theme of life-long adhering to a diet and its negative effect on family relationsh ips (Sandler et al., 2002). More specifically, preoccupation with food might reduce the quality of life of the entire family of a service user with chronic GI disease.

Explanatory models for EE

Previous research has established three explanatory models for EE, namely cause attributional model, vulnerability- or diathesis-stress model, and personality trait model.

The causal attribution model posits that high attributions of service users' controllability, responsibility, and blame concerning their illness might predict EE, families' high criticism towards service users in particular (Brewin et al., 1991). Family members with the high attributions of controllability consider that their family members with a condition can control their symptoms and express critical remarks when the service users, in their opinion, do not manage their condition. Blame/guilty attributions predict carers' belief in service users' responsibility for disease outcomes. The diathesis-stress model explains life-long disease as service users' specific vulnerability to experiencing stress (Hooley & Gotlib, 2000). Finally, the personality trait model points out that high EE-carers are more intolerant, inflexible, and intrusive than low-EE cares (Leff & Vaughn, 1985).

Illness narrative and its elements

Chronic GI disease is a condition that considerably impacts service users' quality of life. Brokerhof et al. (2020) define chronic illnesses as prolonged illnesses, do not resolve spontaneously and are rarely cured completely. Every fourth individual in the world, four suffer from functional gastrointestinal disorders of varying severity. In addition, digestive diseases necessitate 25% of all surgical operations. Wearden et al. (2000) argue that in the case of chronic illnesses with diet adherence, EE refers instead to the course of illness than its outcome. Nevertheless, pointing out the outcome of the illness, other essential aspects emerge, namely "psychosocial adjustment, coping, and the burden of the family" amongst others (Wearden et al., 2000, p. 656). One of the most well-known approaches to examine all these aspects in individuals with a medical condition is illness narrative.

Shapiro (2020) argues that illness narrative is the conscious and unconscious representation of intricate personal motives and personal relations in micro-and macro-environments; therefore, illness narrative expresses family communicative patterns, considering disease and service user's behaviour. Thus, illness narratives and narrating elements could be an additional measure to assess perceived EE. Therefore, research of EE in illness narratives offers excellent potential for understanding the family environment in people with chronic GI disease.

Adler et al. (2012) suggest that agency, communion and narrative coherence are the fundamental elements in illness narratives in patients with a borderline personality disorder. We assume that these elements also play a crucial role in constructing the meaning of the family environment of a service user with the chronic disease since agency, community and narrative coherence express the subjective view of disease and its impact on relations with significant others. Furthermore, elements of agency and communion might express service users' perceived EE. Agency is a narrating element, expressing service users as the initiators of their family's experiences related to the chronic disease. Community regards the intimacy between the service user and significant others. While agency considers service users' motivation to overcome circumstances, communion expresses the individual's motivation for attachment, affiliation, love, friendship, and nurturance (Adler et al., 2012, p. 501). Considering that agency and communion are two principal dimensions of thematic content, narration coherence is one of the fundamental structural components of illness narratives. Adler et al. (2012) suggest that low narrative coherence is associated with poor mental health. However, the association between low narrative coherence and chronic medical conditions remains unclear. The present study explores the specific manifestation of agency, community and narrative coherence of the illness narratives of individuals with chronic gastrointestinal disorders. The research question is relevant to the current research project: Is there any association between perceived EE and agency, community and narrative coherence as markers of constructing meaning in the illness narratives?

In light of the research question, the following is hypothesised for the current study:

H1: There is an association between EE, PC and criticism and structural components of illness narrative (agency, community and narrative coherence).

H2: There is a reciprocal character of carers-service users' relationships, which is embodied in a match of high PC towards service users and high service users' criticism towards carers.

H3: There is an association between narrative coherence and health and self-management in chronic disease.

H4: Duration of disease, criticism and agency will predict PC in individuals with chronic GI disorders.

Methods

Before the current study, we have got approval from Lesya Ukrainka Volyn National University Ethical Committee. Therefore, the inclusion criteria for recruiting participants are the clinical diagnosis of chronic with chronic GI study recruited 40 patients of Gastroenterology and Proctology Departments of Volyn Oblast Clinical Hospital (Lutsk, Ukraine), females (n=24), males (n=16), mean age was 44.90 ± 2.22 (see Table 1).

To consider the heterogeneity of the population with CD, we have applied a maximum variation sampling strategy regarding age, gender, marital status, occupational status, and disease duration. Health and Self-Management in Gastrointestinal Disorders (HASMGID) as adopted version of Health and Self-Management in Diabetes. The measure provides an assessment of self-management in diabetes (Carlton et al., 2020). The questionnaire consists of 8 attributes, four about quality of life (mood, disease relapse, social limitations, energy), and four about self-management (control, hassle, stress, support), and shows a high and constructed validity. The internal consistency for the adopted Ukrainian version of the entire questionnaire HASMGID is 0.72. Since the questionnaire includes health quality of life items in individuals with medical conditions, the current study applies this questionnaire to substitute item 2 of hypoglycemic attacks for disease relapse. The questionnaire assessed the individuals with a medical condition with eight items anchored from 0 = not at all to 3 = a great deal. Scores are additive from 0 to 24. This measure has an inverse scoring, indicating that the higher score, the worse health selfmanagement.

Perceived Criticism Measure. Masland et al. (2019) suggest that PC is an independent construct aligned with poor outcomes and relapses. Assessing the service users' views could lead to a deeper understanding of relatives' roles in the transactional process of family caregiving and illness. Considering criticism as a most significant component of EE, Hooley and Teasdale (2006) instructed the service users to rate how critical they thought their relative was of them using a 10-point Likert- type scale. In addition, they asked patients how critical they thought they were of their relative using the same scale. Therefore, the service users' responses to the two questions, namely "When your relative criticises you, how upset do you get" and "When you criticise your relative how upset does he or she get?" (Hooley & Teasdale, 2006, p. 391). Findings of assessing individuals with depression indicate an association between service users' scores, spouses' and overall EE (r= .51) when measured by the Camberwell Family Interview (CFI).

Narration coherence. The study examines illness self-narratives through narrative structural components: agency, community, and narrative coherence (Adler et al., 2012). We instructed the individuals with a medical condition to write the selfnarrative about their disease and its impact on their life. Illness narratives were scored separately for the agency and community using a 0 -3 scale. Narrative coherence includes four dimensions, namely orientation (essential background information to understand the context of the illness narrative), structure (logical and consistent narrating), affect (expressing emotions and feelings in the illness narrative), integration (relation of separate episodes to the entire personal story). The study assesses each dimension independently using a 0 to 3 scale, from 0 = not at all to 3 = a great deal. Here are two excerpts from the illness narratives and different scoring :

(1) When I got known my diagnosis, my relatives began to take care of me and support me in everyday activities. They do not overload me with work. I am thankful to God that I have my family.

(2) Everything seemed to be good before I felt ill. However, my disease made me feel angry all time. I often quarrel with my family members for any reason. I often cry at my wife and children because they do not understand me and my condition. They also are not satisfied with my behaviour and often criticise me. They are not aware that I can work as much as earlier. In addition, I cannot work at my previous job.

The first excerpt expresses positive family environments, and the second expresses a hostile atmosphere. All narrative structural components are embodied in distinct language units. For example, the first excerpt received score 3 on the agency (“I got known”, “I am thankful”) and communion (“they take care of me”, “they support me”); score 1 on orientation (there is no background and personal experience before being diagnosed), score 1 on affect (there are no categories expressing feeling and emotions except thankful), score 3 on structure (logical and consistent thoughts), score 1 (there is no concrete life episodes confirming narrator's experience).

The second example received score 3 on the agency (fully expressed narrator's stand and behaviour), score 0 on communion (there is no intimacy and family support and understanding the health-related issues), score 1 on orientation dimension (there a brief introduction and background), score 3 on structure dimension (the narration is logical and consistent), score 3 on affect dimension (there are categories indicating emotions and feelings: feeling angry, being not satisfied), score 1 on integration dimension (there is only one life episode describing the previous pace of occupation).

Two reliable experts, blinded to the objective and hypothesis of the current research examined all structural components of illness narrative (Agency ICC = .77, Communion ICC = .80, Orientation ICC = .80, Structure ICC =.79, Affect ICC = .82, Integration ICC = .79).

Results

Table 1

Descriptive Information for the Individuals with Chronic GIDisease Sample (n=40)

H1, H2 and H3 assume that there is an association between EE, PC and criticism and structural components of illness narrative; there is a reciprocal character of carers-service users' relationships, embodies in the match of high PC towards service users - high service users' criticism towards carers; there is an association between narrative coherence and health and self-management in chronic GI disease.

The sample size meets the requirements of the Central Limit Theorem (n=40>30). Therefore, Pearson product-moment correlation was used.

Table 2 illustrates significant correlations between variables.

Table 2