No one listens to me,nobody believes me: Self management and the experience of living with encephalitis

Over the past twenty years, there has been considerable interest in individuals’ experience of chronic illness. In addition to the more established concerns of medical sociology, recent policy reflects an interest in how individuals manage their condition. Using material from qualitative interviews with 23 individuals carried out in the United Kingdom, this paper examines a person’s experience following encephalitis, as a way of exploring the potential value of current policy initiatives associated with self-management. Our findings suggest that individuals’ illness experiences become embedded in conditional acceptance derived from and sustained through their social relationships. This raises a fundamental policy tension: is the purpose of current self-management strategies to help individuals cope better with illness or with the context in which their illness experience is realised? We conclude that policy needs to question how it ‘imagines’ long-standing conditions, without recourse to generalised notions of coping and adjustment. This, in turn, means adapting a less instrumental and more contextualised approach to self-management.     

Situating mental health work in place: Qualitative findings from interviews with Veterans in Southeastern Louisiana and Northern California

Most chronic illness management occurs outside clinics and hospitals, in the everyday lives of individuals. We use data from semi-structured interviews with 37 veterans from Southeastern Louisiana and Northern California to illustrate how “health work” for mental health concerns are shaped by place. Using health work as an orienting concept for analysis, we discerned variation between the two study sites in how Veterans used interacting with the natural environment, cultivating time alone, and religious practice to manage their mental health and well-being. Through these findings, we advocate for a situated notion of health work that is mindful of how health-related behaviors are shaped by place and the attributes that constitute place.     

Assessment of chronic illness care (ACIC): a practical tool to measure quality improvement

OBJECTIVE: To describe initial testing of the Assessment of Chronic Illness Care (ACIC), a practical quality-improvement tool to help organizations evaluate the strengths and weaknesses of their delivery of care for chronic illness in six areas: community linkages, self-management support, decision support, delivery system design, information systems, and organization of care. DATA SOURCES: (1) Pre-post, self-report ACIC data from organizational teams enrolled in 13-month quality-improvement collaboratives focused on care for chronic illness; (2) independent faculty ratings of team progress at the end of collaborative. STUDY DESIGN: Teams completed the ACIC at the beginning and end of the collaborative using a consensus format that produced average ratings of their system's approach to delivering care for the targeted chronic condition. Average ACIC subscale scores (ranging from 0 to 11, with 11 representing optimal care) for teams across all four collaboratives were obtained to indicate how teams rated their care for chronic illness before beginning improvement work. Paired t-tests were used to evaluate the sensitivity. of the ACIC to detect system improvements for teams in two (of four) collaboratives focused on care for diabetes and congestive heart failure (CHF). Pearson correlations between the ACIC subscale scores and a faculty rating of team performance were also obtained. RESULTS: Average baseline scores across all teams enrolled at the beginning of the collaboratives ranged from 4.36 (information systems) to 6.42 (organization of care), indicating basic to good care for chronic illness. All six ACIC subscale scores were responsive to system improvements diabetes and CHF teams made over the course of the collaboratives. The most substantial improvements were seen in decision support, delivery system design, and information systems. CHF teams had particularly high scores in self-management support at the completion of the collaborative. Pearson correlations between the ACIC subscales and the faculty rating ranged from .28 to .52. CONCLUSION: These results and feedback from teams suggest that the ACIC is responsive to health care quality-improvement efforts and may be a useful tool to guide quality improvement in chronic illness care and to track progress over time.     

What does an e-mail address add? - Doing health and technology at home

There is increasing interest in using electronic mail and other electronic health technologies (e-health technologies) in patient follow-ups. This study sheds light on patients' reception of provider-initiated e-health in their everyday environments. In a research project carried out in Norway (2005-2007), an electronic address for a hospital dermatology ward was offered to 50 patient families for improved access to expert advice from the patients' homes. Drawing on semi-structured interviews with 12 families, this paper explores how the electronic address was integrated into everyday health practice. The research illuminates how the electronic address did not only represent changes related to treatment procedures and frequency or nature of expert contact; it was also important to other practices in the everyday lives of the families of patients with chronic illness. Once in place on the patients' computers, the electronic address was ascribed at least four different roles: it was used as the intended riverbed for a flow of information, but also as a safety alarm, as a shield to the medical gaze and as a token of competence in care and parenting. The multiplicity in use and reception of an electronic address in patient settings illustrates the need to include patients' everyday practices in current professional and political discussions of e-mail and other e-health technologies. Thus this paper argues that there is a need for research on electronic patient-provider communication that moves beyond frequency of use and questions on how technology will affect medical encounters. Social science equally needs to investigate how provider-initiated e-health technologies gets involved in patients' moral and social performance of health and illness in everyday life.     

Dealing with self-management of chronic illness at work: predictors for self-disclosure

This paper explores the role of self-management of chronic illness at work, as a predictor for self-disclosure. The study reports findings from a survey sent to all staff at a UK university, of which 610 employees reported managing a chronic illness: arthritis, musculoskeletal pain, diabetes, asthma, migraine, heart disease, irritable bowel syndrome and depression. The study found that discrete self-management factors predicted different levels of disclosure: partial self-disclosure (employees informing line managers about the presence of a chronic illness) and full self-disclosure (employees informing line managers how that chronic illness affected them at work). For partial disclosure, a greater reported experience of chronic illness by employees was positively associated with self-disclosure. For full-disclosure, employees were more likely to report disclosure to line managers if they had already disclosed to colleagues, and if they perceived receiving support from their line managers in relation to their chronic illness as important. Except for academics who were least likely to disclose, occupational groups did not emerge as significant predictors for either partial or full disclosure. Except for diabetes, chronic illness itself was not a significant predictor or barrier to self-disclosure. Our findings suggest that chronically ill employees adopt a disclosure strategy specifically related to different self-management needs of chronic illness at work.     

Communication and the Appraisal of Uncertainty: Exploring Parents’ Communication with Credible Authorities in the Context of Chronic Childhood Illness

Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their child’s illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. While previous research has explored parents’ uncertainty during a child’s diagnosis and during end-of-life care, less is known about these experiences when the child is referred to a team of specialists for treatment. The aim of the current study was to explore how specialists, as credible authorities, influence parents’ uncertainty during parents’ first visit to a multidisciplinary clinic for the care of their child’s complex chronic illness. Data were collected through semi-structured interviews with 29 parents after their child’s first visit to a vascular anomaly clinic at a large Midwestern children’s hospital. The results suggest parents’ communication with credible authorities facilitates effective uncertainty management primarily through the mechanism of uncertainty reappraisal. The results also suggest that specialists, as credible authorities, are a key mechanism in the appraisal of uncertainty for conditions that are often misdiagnosed and mismanaged.     

The influence of social support on chronic illness self-management: a review and directions for research.

A review of the empirical literature examining the relationship between social support and chronic illness self-management identified 29 articles, of which 22 were quantitative and 7 were qualitative. The majority of research in this area concerns diabetes self-management, with a few studies examining asthma, heart disease, and epilepsy management. Taken together, these studies provide evidence for a modest positive relationship between social support and chronic illness self-management, especially for diabetes. Dietary behavior appears to be particularly susceptible to social influences. In addition, social network members have potentially important negative influences on self-management There is a need to elucidate the underlying mechanisms by which support influences self-management and to examine whether this relationship varies by illness, type of support, and behavior. There is also a need to understand how the social environment may influence self-management in ways other than the provision of social support     

Sick but healthy: bariatric patients and the social construction of illness and disability

Bariatric (weight loss) surgery modifies the digestive system, which produces impairments and symptoms which might be considered illness or disability. Bariatric patients, however, do not view themselves as ill or disabled, but healthier than before surgery. For this study, 35 bariatric patients – from a clinic located in the Midwestern United States – were interviewed to investigate how moral and medical discourses surrounding obesity impact how patients experience their bodies after bariatric surgery. While previous literature on bariatric patients has explored discourses of medicine, stigma and discipline, fewer have analysed how patients interpret physiological symptoms. Patients often reduce or discontinue medications for chronic illness after bariatric surgery, then replace them with a strict regimen of dietary supplements. Even though these supplements are taken to manage an impaired digestive system, they do not carry the same moral weight as medications for chronic illness. Patients also experience painful and humiliating symptoms after bariatric surgery. Bariatric patients interpret symptoms not as illness, but as important disciplinary tools to lose weight. These findings have implications for the social construction and experience of illness and disability in the context of fat stigma, health morality and biomedicalisation.     

Behavioral Aspects of Arthritis and Rheumatic Disease Self-Management

Chronic diseases such as arthritis and related conditions have no ‘cure’, and thus require ongoing management. The long term nature of chronic disease gives the individual a crucial role, if not the most crucial role, in managing their condition. Day-to-day self-management is extremely important in achieving optimal health outcomes, and indeed, people with arthritis use a variety of strategies to relieve symptoms or manage disease consequences.This review identifies and discusses 6 different domains of arthritis self-management behaviors: (i) medical management; (ii) joint protection strategies; (iii) physical activity and exercise; (iv) topical applications; (v) complementary and alternative strategies; and (vi) stress and mind/body practices. Conceptualizing arthritis self-management in this manner enables a discussion of a range of practices that may be used to manage arthritis conditions.The literature on several established arthritis self-management programs that are designed to improve either self-care and/or exercise behaviors is also reviewed. Despite evidence of cost containment and improved health outcomes, these programs reach only a small percentage of people with arthritis who may benefit from them.Clinical intervention for people with arthritis may be enhanced if self-management is approached from a broad perspective and, if established, self-management programs are integrated into clinical interventions.     

The Influence of Employer Support on Employee Management of Chronic Health Conditions at Work

Introduction This study examined the relationship between employer support, self-efficacy and self-management of chronic illness at work. Method 772 employees reporting musculoskeletal pain (n = 230), arthritis and rheumatism (n = 132), asthma (n = 129), depression and anxiety (n = 121), heart disease (n = 80) and diabetes (n = 80) completed a questionnaire distributed across four large organizations. A modified version of the Self-Efficacy to Manage Symptoms Scale and the Self-Management Behaviors Scale were used. Support from line manager and occupational health were assessed. Results Structural equation modelling analyses revealed that line managers support was directly related to employees’ self-management of symptoms and medication at work. All three self-efficacy measures (beliefs about the ability to make adjustments, take medication and manage symptoms at work) partially mediated the relationship between line manager support and the use of medication at work. Self-efficacy beliefs in taking medication and making work adjustments also partially mediated the relationship between line manager support and self-management of symptoms at work. In contrast, there were no direct relationship between occupational health support and two self-management behaviors. Self-efficacy beliefs about making adjustments at work fully mediated the relationship between support from occupational health and self-management behaviors. Conclusions Employer support in developing both symptom-related and work-related self-efficacy for medication adherence and symptom management is important for those working with a chronic illness.     

Parental beliefs and willingness to pay for reduction in their child's asthma symptoms: A joint estimation approach

Many aspects of asthma—in particular the relationship between beliefs, averting behaviors, and symptoms—are not directly observable from market data. An approach that combines observable market data with nonmarket valuation to gather data on unobservable aspects of the illness can improve efforts to quantify the burden of asthma if it accounts for the endogeneity in the system. Such approaches are used in the valuation of recreation but have not been widely used to value the burden of a chronic illness. We estimate parents' willingness to pay (WTP) to reduce their child's asthma symptoms using a three‐equation model that combines revealed preference, contingent valuation, and burden of asthma, increasing the efficiency of estimation and correcting for endogeneity. WTP for a device that reduces a child's asthma symptoms by 50% is $125/month (s.d. $20). Parents' valuations are driven by beliefs about asthma and by their degree of worry about asthma between episodes. There is a nonlinear relationship between the number of days with symptoms and WTP per symptom day. The experience of living with asthma affects families' responses to a contingent valuation scenario, because it influences willingness to spend money to manage the illness and their subjective perceptions and beliefs about the illness itself.     

Overweight and obese low-income women: restorative health behaviors under overwhelming conditions

In this grounded theory study we used semistructured interviews to explore how 16 low-income uninsured Midwestern United States women who were overweight or obese felt about their condition. Using grounded theory, we identified a central problem-overwhelming conditions exemplified by numerous stressors in the lives of the participants. Despite these overwhelming conditions, the participants identified numerous restorative health behaviors in five dimensions: health, economics, environment, knowledge, and commitment. Health care providers should be cognizant of their patients' complex lives and support them in identifying, adopting, and maintaining health-restoring behaviors that work for them.     

The role of social support in multiple morbidity: self-management among rural residents

Social support generally is considered a valuable asset that may compensate for health service deficiencies among rural populations. Employing a mixed methods approach, we explored how vulnerable rural residents described social support in the context of self-management for multiple chronic conditions. Participants generally felt support was available, though emotional/informational support was perceived as less available than other types of support. Participants did not rely heavily on informal support to help them manage their multiple morbidities, preferring to call on their doctor and their own resources. We discuss implications of these findings for meeting this vulnerable population's self-management needs.     

Patients’ self-efficacy within online health communities: facilitating chronic disease self-management behaviors through peer education

In order to combat the growing burden of chronic disease, evidence-based self-management programs have been designed to teach patients about the disease and its affect on their lives. Self-efficacy is a key component in chronic disease self-management. This research used online ethnography and discourse analysis (N = 8,231) to examine self-efficacy within the computer-mediated communication (CMC) of four online health communities used by people with arthritis. Specifically, online opinion leaders were identified for examination. Across the four communities, there was a cyclical process that involved “disease veterans” sharing their experiences and gaining credibility within the community, new(er) members suffering from disease symptoms and sharing their experiences online, and finally, asking others for help with arthritis self-management behaviors. Three themes follow: (1) sharing disease experience, (2) suffering from disease symptoms, and (3) asking for help. Practical implications for health promotion and education are discussed.     

The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies

Abstract This paper examines the meanings of symptoms for people with osteoarthritis. The study comprised 27 in‐depth interviews with men and women aged between 51 and 91 years (median age = 76) and draws on previous sociological work about experiences of chronic illness, disability and ageing. In particular, the distinction proposed by Bury between ‘meaning as significance’ (the significance and connotations associated with illness) and ‘meaning as consequence’ (problems created for the individual by activity restriction and social disadvantage), provides a useful framework to examine the biographical aspects of symptoms. We found that older respondents portrayed their symptoms as a normal and integral part of their biography, but they also talked about the highly disruptive impact of symptoms on their daily lives. We consider how these co‐existing accounts of meaning make sense in the context of cultural connotations of ageing and the implications for meeting health care needs of older people with osteoarthritis.     

Assessing self-management and spirituality practices among older women

OBJECTIVE: To understand the role of spirituality in the self-management of cardiovascular disease and arthritis. METHOD: Self-management practices were selected from older women enrolled in a longitudinal study (N=492) whereas 24 of the enrolled participants were selected for an in-depth interview regarding the role of spirituality in their self-management practices. RESULTS: Significant differences were found in the level of spirituality in self-management behaviors based on ethnicity. The qualitative analyses reaffirmed the importance of spirituality in the self-management of chronic illness. CONCLUSION: Using multiple methodologies, this study elucidated the role of spirituality in the self-management of chronic illness among older women.     

Normalization strategies of children with asthma

Despite understanding the physiologic effects of childhood asthma, less is known about how children perceive living with asthma. We undertook semistructured, in-depth interviews with 11 boys and 11 girls (all aged 11) drawn from a larger ongoing asthma study of Manitoba children born in 1995. All had asthma, as diagnosed by a pediatric allergist. We sought to further understand how children perceive asthma. Children spoke of feeling different and commonly used words such as "pain" and "hurt." We have categorized children's strategies to normalize their lives as (a) minimizing the health impact, (b) stressing normality, (c) emphasizing abilities, (d) making adaptations in daily living, and, (e) managing symptoms with medications. These findings suggest that aspects of other researchers' work regarding normalization efforts of children with various chronic diseases also apply in a chronic condition that is less obvious.