A review of the role of illness models in severe mental illness

The ways in which people think about illness experiences have been associated with a variety of important behaviours and emotional responses in patients, carers, and professionals. Some of these responses have been shown to be related to outcome. Explicit models such as the self-regulation model (SRM) [Leventhal, H., Nerenz, D. R., & Steele, D. F. (1984). Illness representations and coping with health threats. In A. Baum & J. Singer (Eds.), A handbook of psychology and health. Hillsdale, NJ: Erlbaum, 219-252.] have been shown to be useful in highlighting key beliefs across a wide range of different physical illnesses. The specific beliefs about mental illness that have been assessed have been varied and largely without a common theoretical framework. This has resulted in a literature from which it is difficult to draw firm conclusions. The central aim of this paper is to assess the applicability of the SRM to mental illness. To this end, we review studies to date that have examined the beliefs that people with a mental illness have about their experiences. In addition, we review studies that have examined the beliefs of relatives of people with a mental illness and professionals who work with this population. We assess to what extent these studies are consistent with the SRM before suggesting ways in which the model could be further developed and tested. The SRM is presented as a useful framework for more advanced investigations into the function of beliefs about mental illness and how these can be modified in order to effect outcome. Developing psychological theories common to both physical and mental health may eventually result in an integrated approach in which mental illness becomes less stigmatised within the treatment setting.     

Predicting Self-Management Behaviors in Familial Hypercholesterolemia Using an Integrated Theoretical Model: the Impact of Beliefs About Illnesses and Beliefs About Behaviors

Purpose

Patients with familial hypercholesterolemia (FH) are at markedly increased risk of coronary artery disease. Regular participation in three self-management behaviors, physical activity, healthy eating, and adherence to medication, can significantly reduce this risk in FH patients. We aimed to predict intentions to engage in these self-management behaviors in FH patients using a multi-theory, integrated model that makes the distinction between beliefs about illness and beliefs about self-management behaviors.

Methods

Using a cross-sectional, correlational design, patients (N?=?110) diagnosed with FH from a clinic in Perth, Western Australia, self-completed a questionnaire that measured constructs from three health behavior theories: the common sense model of illness representations (serious consequences, timeline, personal control, treatment control, illness coherence, emotional representations); theory of planned behavior (attitudes, subjective norms, perceived behavioral control); and social cognitive theory (self-efficacy).

Results

Structural equation models for each self-management behavior revealed consistent and statistically significant effects of attitudes on intentions across the three behaviors. Subjective norms predicted intentions for health eating only and self-efficacy predicted intentions for physical activity only. There were no effects for the perceived behavioral control and common sense model constructs in any model.

Conclusions

Attitudes feature prominently in determining intentions to engage in self-management behaviors in FH patients. The prominence of these attitudinal beliefs about self-management behaviors, as opposed to illness beliefs, suggest that addressing these beliefs may be a priority in the management of FH.

     

A systematic review of the association between health literacy and pain self-management

ObjectiveTo synthesize the impact of health literacy on pain self-management contexts, processes, and outcomes.MethodsThis systematic review employed a narrative synthesis. We used databases, including PubMed and PsycINFO, and handsearching of the reference lists to identify articles published before December 2020. Pain self-management variables were chosen based on the Individual and Family Self-Management Theory. Quality was assessed using the National Institute of Health quality assessment tool for observational and cross-sectional studies.ResultsTwenty studies that included 6173 participants were used. Most studies measured functional domains of the health literacy concept. Twelve studies reported small to large associations between health literacy and pain knowledge, medication regimen adherence, or pain. Thirteen studies considered health literacy clinical risks in tailoring education, while seven viewed it as personal assets developed via education.ConclusionsLimited information on the contribution of health literacy to pain self-management context factors and processes exists. Current evidence was limited by a lack of temporality, theoretical basis, and a priori sample estimation.Practice ImplicationsUsing brief functional literacy scales in the clinical environment can be more practical. Identifying patients’ literacy levels helps clinicians personalize education, which then promotes patients’ knowledge of pain, medication regimen adherence, and pain control.     

Personal Models for Diabetes in Context and Patients’ Health Status

In a diverse sample of 452 adult diabetes patients, we investigated: (1) personal model dimensions for diabetes and expanded upon the literature by indexing fatalism, (2) the relationship between contextual factors and patients’ beliefs about the seriousness and controllability of diabetes, and (3) the unique contribution of illness representation combinations to clinical outcomes when controlling for baseline disease severity. Major categories of predictors included patients’ sociocultural characteristics, illness history (e.g., co-morbidities, diabetes complications) and recent physical symptoms. Illness representations were measured using the Personal Models of Diabetes Interview and questions that index fatalistic beliefs. Clinical outcome measures included patients’ glycemic control (HbA1c) and the patient's physical and mental functions as measured by the SF-12. Analyses corroborated the literature by identifying seriousness and treatment effectiveness cognitive model dimensions for diabetes. Physical symptoms and other disease-related factors were strong predictors of patients’ seriousness beliefs for diabetes, whereas sociocultural factors (education, ethnicity) best explained representations related to the controllability of diabetes (i.e., treatment effectiveness, fatalism). Seriousness beliefs were good indicators of actual glucose control, except for cases in which patients were more fatalistic and believed diabetes to be less serious. Although patients had medically consistent views of their diabetes, variations in personal models of diabetes were related to specific contextual factors and independently explained diabetes control.     

Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND): process modelling of pilot study

OBJECTIVE: To determine the effects of a structured education program on illness beliefs, quality of life and physical activity in people newly diagnosed with Type 2 diabetes. METHODS: Individuals attending a diabetes education and self-management for ongoing and newly diagnosed (DESMOND) program in 12 Primary Care Trusts completed questionnaire booklets assessing illness beliefs and quality of life at baseline and 3-month follow-up, metabolic control being assessed through assay of HbA1c. RESULTS: Two hundred and thirty-six individuals attended the structured self-management education sessions, with 97% and 64% completing baseline and 3-month follow-up questionnaires. At 3 months, individuals were more likely to: understand their diabetes; agree it is a chronic illness; agree it is a serious condition, and that they can affect its course. Individuals achieving a greater reduction in HbA1c over the first 3 months were more likely to agree they could control their diabetes at 3 months (r=0.24; p=0.05), and less likely to agree that diabetes would have a major impact on their day to day life (r=0.35; p=0.006). CONCLUSION: Pilot data indicate the DESMOND program for individuals newly diagnosed with Type 2 diabetes changes key illness beliefs and that these changes predict quality of life and metabolic control at 3-month follow-up. PRACTICE IMPLICATIONS: Newly diagnosed individuals are open to attending self-management programs and, if the program is theoretically driven, can successfully engage with the true, serious nature of diabetes.     

Review of the literature: integrating psychoneuroimmunology into pediatric chronic illness interventions

OBJECTIVE: Provide an orientation to psychoneuroimmunology, a rationale for including assessments of immune function in intervention studies of pediatric chronic illness, review the current literature, and provide recommendations for future research. METHODS: Using electronic searches and previous reviews, selected and reviewed published studies in which immunological changes related to psychological interventions were assessed in pediatric samples. RESULTS: Eight studies were identified and included in the review. These utilized a range of interventions (e.g., disclosure and hypnosis) and included a variety of pediatric samples (e.g., those with asthma, HIV infection, or lupus). CONCLUSIONS: Results suggest that psychological intervention can influence immune function in pediatric samples. Recommendations for advancing our knowledge by studying populations for whom the immune system plays an active role in disease pathophysiology, measuring disease-relevant immune mediators, studying pediatric patients under times of stress, and focusing on interventions aimed at altering the stress system are provided.     

Self-management support needs of patients with chronic illness: Do needs for support differ according to the course of illness?

ObjectiveTo determine whether chronically ill patients’ needs for self-management support depend on their course of illness.MethodsCross-sectional and longitudinal linear regression analyses were conducted using data from 1300 patients with chronic disease(s) who participated in a nationwide Dutch panel-study. Self-management support needs were assessed by the Patient Assessment of Self-management Tasks questionnaire (PAST). Course of illness was operationalized as: illness duration, patients’ perception of the course of illness and changes in self-rated general health (RAND-36).ResultsSelf-management support needs are not related to illness duration. Patients who perceive their illness as episodic and/or progressively deteriorating have greater self-management support needs than patients who perceive their illness as stable. Deterioration of self-rated health is related to increased support needs. The effect of the course of illness on support needs depends on the type of self-management activities.ConclusionHow chronically ill patients perceive the course of illness and actual changes in self-rated health are predictive for their need for support for self-management activities. Illness duration is not.Practice implicationsHelping patients to self-manage should not be confined to the first years after diagnosis. Healthcare providers should be alert to patients’ own perceptions of their course of illness and health status.     

A prospective examination of illness beliefs and coping in patients with type 2 diabetes

Objective. According to the common‐sense model of illness behaviour, illness representations are directly related to coping and, via coping, to adaptive or maladaptive outcomes. However, it may be more appropriate to conceptualize coping by assessing what patients actually do – i.e., their coping behaviours – rather than what they say they do in coping scales – i.e., their coping cognitions. The aim of this study was to examine the relationships between illness representations and the relative importance of coping cognitions and coping behaviours in the context of the management of type 2 diabetes. Design. The relationship between illness representations and coping variables was explored within a prospective design. Methods. The illness representations of 134 patients were assessed with the IPQ‐R ( Moss‐Morris et al., 2002 ) along with coping cognitions and coping behaviours (medication, physical activity, diet). Results. Illness representations predicted coping cognitions and coping behaviours but coping cognitions did not mediate the relationships between illness representations and coping behaviours. Conclusion. The results demonstrate that illness representations are direct predictors of both coping cognitions and coping behaviours in patients with type 2 diabetes. In addition, coping cognitions and coping behaviours appear to be distinct mechanisms that operate independently. The findings suggest that rather than manipulating patients' coping cognitions to improve patients' health behaviours it may be beneficial to focus on their beliefs about diabetes.     

Do metacognitive beliefs predict rumination and psychological distress independently of illness representations in adults with diabetes mellitus? A prospective mediation study

Objective

Adults with Diabetes Mellitus (DM) experience high levels of depression and anxiety that are not always effectively ameliorated by current therapeutic approaches. The Self-Regulatory Executive Function (S-REF) model, which underpins metacognitive therapy (MCT), posits that depression and anxiety become persistent when stored metacognitive beliefs guide an individual to respond to common thoughts and feelings in a certain way. We hypothesized that (i) metacognitive beliefs would predict depression and anxiety independently of participants' representations of their illness; and (ii) rumination would mediate independent prediction of depression and anxiety by metacognitive beliefs.

Design

A prospective mediation study.

Methods

Four hundred and forty-one adults with DM (Types 1 and 2) completed a two time-point survey. Metacognitive beliefs, illness representations and rumination were measured at baseline, and depression and anxiety measured at baseline and 6-months later. Data were analysed using structural equation modelling. Baseline illness representations, depression and anxiety were used as control variables.

Results

A structural equation analysis showed potential mediation, by baseline rumination, of any effects of baseline metacognitive variables on 6-month distress in Type 1 and 2 diabetes samples. Significant standardized coefficients for relationships between the metacognitive latent variable and rumination were .67 (Type 1) and .75 (Type 2) and between rumination and distress of .36 and .43, respectively. These effects were independent of direct and independent effects of illness representation variables.

Conclusions

Findings are consistent with metacognitive beliefs playing a key role in depression and anxiety by increasing the likelihood of rumination in adults with DM. MCT may be an effective intervention for this population, subsequent to further longitudinal testing of the S-REF model.     

Mental illness stigma and ethnocultural beliefs, values, and norms: an integrative review

The current literature on the problem of mental illness stigma in the United States must be expanded to better account for the role of culture. This article examines the relationship between mental illness stigma and culture for Americans of American Indian, Asian, African, Latino, Middle Eastern, and European descent. In this review, culture refers to the shared beliefs, values, and norms of a given racial or ethnic group. The reviewed literature indicates that there are differences in stigma among the various cultural groups; however, explanations as to why these differences exist are scant. Qualitative and quantitative studies indicate that cultural values are important with regard to stigma, particularly for Asian Americans and African Americans. Less is known about the interaction between cultural values and mental illness stigma for other cultural groups. Continued research in the area requires better organization and more exploration of the role of cultural history and values as they relate to mental illness stigma. To that end, a detailed, systematic approach to future research in the area is proposed.     

Assessing chronic illness representations: The implicit models of illness questionnaire

Data were collected from three samples using the Implicit Models of Illness Questionnaire (IMIQ) to assess illness representations as described in the self-regulation model of common sense illness representations. A factor structure was identified which displayed some similarities to the common sense model. This structure was used to examine illness representations of students and patients concerning three illnesses—rheumatoid arthritis (RA), multiple sclerosis (MS), and human immunodeficiency virus (HIV). Representations differed across illnesses and respondent status (patient vs. student). Students rate individuals as having more personal responsibility for RA or MS than did patients; moreover, the difference between patient/student ratings was greater with respect to MS than it was for RA. Patients were more aware of the variable nature of RA and MS symptoms than were students. This study demonstrates the value of the IMIQ as a tool for assessing illness cognitions and suggests that illness representations differ as a function of personal experience and personal relevance.The study presented here was supported by an Arthritis Foundation Traineeship Grant to the first author and grants from the National Institute of Health (AM36679) and the Professional Staff Congress—CUNY to Tracey A. Revenson and by a grant to the first author from Fordham University.     

Self-management support needs of patients with chronic illness: Do needs for support differ according to the course of illness?

Objective

To determine whether chronically ill patients’ needs for self-management support depend on their course of illness.

Methods

Cross-sectional and longitudinal linear regression analyses were conducted using data from 1300 patients with chronic disease(s) who participated in a nationwide Dutch panel-study. Self-management support needs were assessed by the Patient Assessment of Self-management Tasks questionnaire (PAST). Course of illness was operationalized as: illness duration, patients’ perception of the course of illness and changes in self-rated general health (RAND-36).

Results

Self-management support needs are not related to illness duration. Patients who perceive their illness as episodic and/or progressively deteriorating have greater self-management support needs than patients who perceive their illness as stable. Deterioration of self-rated health is related to increased support needs. The effect of the course of illness on support needs depends on the type of self-management activities.

Conclusion

How chronically ill patients perceive the course of illness and actual changes in self-rated health are predictive for their need for support for self-management activities. Illness duration is not.

Practice implications

Helping patients to self-manage should not be confined to the first years after diagnosis. Healthcare providers should be alert to patients’ own perceptions of their course of illness and health status.     

Scholarly literature review: Efficacy of psychological interventions for pediatric chronic illnesses

OBJECTIVE: To review empirical studies of the efficacy of psychological interventions as adjuvant therapies for children with pediatric diabetes, cancer, cystic fibrosis, and sickle cell disease. METHODS: A search was conducted for qualifying studies published since 1980. Only studies meeting basic criteria for external and internal validity were included. Nineteen studies were identified, providing data on 62 outcome variables. Effect sizes (ESs) were analyzed by illness type, intervention type, and strength of internal and external validity of the research design. RESULTS: Overall, interventions were associated with large ESs, which were not significantly moderated by illness type or intervention type. However, larger ESs were associated with lower scores on validity of research design. CONCLUSIONS: Adjuvant psychological interventions for pediatric chronic illnesses appear in general to be efficacious, associated with a large mean ES across a range of outcome variables. However, until more studies have been completed using stronger research designs, only tentative conclusions can be drawn.     

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

BackgroundRecent years have seen an exponential increase in people with long-term conditions using the Internet for information and support. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. However, less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness “workforce.”ObjectiveThe aim was to understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions in daily life.MethodsA systematic search of qualitative papers was undertaken using various online databases for articles published since 2004. A total of 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities for those with a long-term condition. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis.ResultsThe main themes identified in relation to the negotiation of self-management support were (1) redressing offline experiential information and knowledge deficits, (2) the influence of modeling and learning behaviors from others on self-management, (3) engagement that validates illness and negates offline frustrations, (4) tie formation and community building, (5) narrative expression and cathartic release, and (6) dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified. These were (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-management support.ConclusionsSocial ties forged in online spaces provide the basis for performing relevant self-management work that can improve an individual’s illness experience, tackling aspects of self-management that are particularly difficult to meet offline. Membership in online groups can provide those living with a long-term condition with ready access to a self-management support illness workforce and illness and emotional support. The substitutability of offline illness work may be particularly important to those whose access to support offline is either limited or absent. Furthermore, such resources require little negotiation online because information and support is seemingly gifted to the community by its members.     

Social support and personal models of diabetes as predictors of self-care and well-being: a longitudinal study of adolescents with diabetes

OBJECTIVES: To examine whether peer support and illness representation mediate the link between family support, self-management and well-being. METHOD: Fifty-two adolescents (12-18 years old) with Type I diabetes were recruited and followed over 6 months, completing assessments of self-management, well-being, and social support. RESULTS: Perceived impact of diabetes and supportive family and friends were prospectively predictive of participants' well-being measures. Although support from family and friends was predictive of better dietary self-care, this relationship was mediated by personal model beliefs. In particular, beliefs about the effectiveness of the diabetes treatment regimen to control diabetes was predictive of better dietary self-care. CONCLUSIONS: Both friends and family are important to support adolescents as they live with and manage their diabetes. Personal models of diabetes are important determinants of both dietary self-care and well-being. In addition, personal models may serve to mediate the relationship between social support and dietary behavior.     

Knowledge,attitudes, and beliefs related to hypertension and hyperlipidemia self-management among African-American men living in the southeastern United States

ObjectivePerceptions of illness affect cardiovascular disease (CVD) self-management. This study explores knowledge, attitudes, and beliefs regarding hypertension and hyperlipidemia management among 34 African-American men with hypertension and/or hyperlipidemia, age 40–65, living in the Southeastern United States.MethodsIn-person focus groups were conducted using semi-structured interview questions informed by the Health Belief Model (HBM).ResultsParticipants had a high level of knowledge about hypertension self-management, but less about cholesterol self-management. Perceived severity of both conditions was acknowledged, though participants perceived hypertension as more severe. Barriers to self-management included medication side effects and unhealthy dietary patterns. Facilitators included social support, positive healthcare experiences, and the value placed on family. Cultural implications highlighted the importance of food in daily life and social settings. Participants expressed how notions of masculinity affected self-management—noting the impact of feelings of vulnerability and perceived lack of control stemming from diagnosis and treatment expectations.ConclusionsThe findings highlight gaps in knowledge of hyperlipidemia versus hypertension, and the impact of cultural context and perceptions on engagement in self-management behaviors.Practice implicationsPublic health practitioners and healthcare providers serving African-American men should address cultural factors and notions of masculinity which can hinder effective disease management among this population.     

A longitudinal study on illness perceptions in hemodialysis patients: changes over time

Introduction

Self-regulatory theory explains how patients’ illness representations influence self-management behavior. The aim of this study was to examine the changes that occur in disease perceptions after 6 years in hemodialysis patients.

Material and methods

A total of 81 clinically stable patients (53.6% males, meanage 54 ±12.54 years, mean hemoglobin level 11 ±1.52 g/dl, mean Kt/V 1.49 ±0.21) who were treated with hemodialysis three times weekly completed questionnaires on illness representations in 2005, and then at follow-up, in December 2011, 47 patients. IPQ-R (Illness Perceptions Questionnaire-Revised) was used to assess patients’ illness perceptions.

Results

After a long period of years (6 years), patients had a stronger perception of a chronic course of the disease (timeline; p < 0.001), considered hemodialysis more efficient in controlling end stage renal disease (ESRD) (treatment control; p < 0.05), considered that their disease had less serious consequences for their life (consequences; p < 0.05), and also registered a less intense emotional response to their illness (emotional representation; p < 0.05). Two of the seven components of illness representations (personal control, cyclical symptoms) remained unchanged. Treatment control perceptions were also predictive of mortality after controlling for covariates (age, gender, dialysis vintage, blood hemoglobin level and Kt/V) (HR = 0.13, 95% CI: 0.02–0.75, p = 0.022).

Conclusions

Our results show that patients’ illness perceptions vary over a significantly long follow-up period, in the sense of having more optimistic views towards their illness perceptions.     

Qualitative inquiries into social representations of health

Concepts of health and illness have been a major topic for social representations research. Whereas studies on cognitive representations of health and illness develop a general, decontextualized schema of illness, social representations research focuses on the diversity of lay concepts of health and illness and how health and illness are socially constructed in different contexts. Two qualitative studies about the social representations of health are presented. The episodic interview and theoretical coding were used to study health concepts of nurses and clerks in East and West Germany and among Portuguese and German women. Results in both studies show different forms of awareness of health as the core of the health concepts in the various groups. Social representations theory connects these differences back to the political and cultural backgrounds of the study participants.     

The Illness Management Survey: identifying adolescents' perceptions of barriers to adherence

OBJECTIVE: To develop a self-report measure of barriers to adherence and to evaluate its reliability and validity in a sample of adolescents with asthma. METHODS: The Illness Management Survey (IMS) was developed through item generation, expert panel review, and focus group administration. Adolescents with asthma (N = 152) completed the measure. Participants reported on perceived drawbacks to medication, risk-taking behavior, and social desirability tendencies. Providers rated adolescents' illness severity and adherence. Reliability and validity of the IMS were assessed, and factor structure was examined. RESULTS: The 27-item IMS shows high internal consistency (alpha =.87). Scores correlate with perceived medication drawbacks, risk taking, and self- and provider reports of adherence. Principal-components analysis indicates five domains of barriers, accounting for 52.4% of the variance: disease/regimen issues, cognitive difficulties, lack of social support/lack of self-efficacy, denial/distrust, and peer/family issues. CONCLUSIONS: Preliminary data indicate that the IMS reliably and validly assesses perceived barriers to adherence within this sample of adolescents with asthma. It shows promise as a tool for identifying subgroups of nonadherent adolescents.