Chronic illness -- a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia

BACKGROUND: People with chronic illnesses often suffer from identity-loss. Empirical research concerning patients with chronic fatigue syndrome (CFS) or fibromyalgia has not, however, adequately addressed the consequences of these illnesses for identity. AIM: The aim of this article is to describe how women with CFS and fibromyalgia create new concepts of identity after the onset of illness, and how they come to terms with their newly arisen identities. I aim to illuminate the biographical work done by these individuals, which includes a re-evaluation of their former identity and life. This process is illustrated by the following themes: An earlier identity partly lost and Coming to terms with a new identity. METHOD: The study is based on interviews with 25 women in Sweden, 12 with the diagnosis of CFS and 13 diagnosed with fibromyalgia. A grounded theory orientated approach was used when collecting and analysing the data. FINDINGS: The main findings are that: (1) the illnesses can involve a radical disruption in the women's biography that has profound consequences for their identity, particularly in relation to work and social life, (2) biographical disruptions are partial rather than total, calling for different degrees of identity transformation, (3) many of the women also experience illness gains in relation to the new identity. CONCLUSIONS: Thus, the biographical disruption and illness experience comprised both losses and illness gains that had consequences for identity.     

Chronic illness self-management: taking action to create order

Background. This paper presents research that was framed by our early understandings about the ways that people incorporate the consequences of illness into their lives. The word ‘transition’ has been used to describe this process. We believed self‐management to be central to the transition process but this assertion required further research, hence this paper. Aim. The research aimed at understanding the way in which people who lived with chronic illness constructed the notion of self‐management. While the participants of this study were living with arthritis, the focus was on understanding the meaning of self‐management rather than the experience of living with the symptoms of arthritis. Approach. Data were generated when nine people living with arthritis were invited to write an autobiography about their life and experiences of living with illness. Two telephone interviews were recorded with each participant and then the research group (researchers and participants) convened for a discussion meeting. Findings. In contrast to health professionals who identify self‐management as structured education, participants identified self‐management as a process initiated to bring about order in their lives. Creating a sense of order, or self‐management, had four key themes (i) Recognizing and monitoring the boundaries, (ii) Mobilizing the resources, (iii) Managing the shift in self‐identity, (iv) Balancing, pacing, planning and prioritizing Conclusions. People learned about their responses to illness through daily life experiences and as a result of trial and error. They reconfigured their daily lives and reconstructed their self‐identity by exploring their personal limitations or boundaries. Self‐management of chronic illness has been considered as both structure and process, however it is the process of self‐management that we contend is central to the experience of transition. Relevance to clinical practice. Clinical nursing intervention for people with a long term illness may be enhanced when self‐management is approached from a broad, contextual perspective and self‐management processes are integrated into clinical practice. The challenge is for nurses to embrace processes in nursing practice that will facilitate interactions with clients without obstructing the diversity of perspectives, create an environment conducive to learning and engage individuals in identifying self‐management strategies that have meaning in their lives.     

Perceptions of self-esteem in a welfare-to-wellness-to-work program

ABSTRACT Objective: The study investigates welfare recipients' perceptions of personal self‐esteem in relationship with their participation in a welfare‐to‐wellness‐to‐work program. Design and Sample: The cross‐sectional, mixed‐methods design examined a convenience sample of 33 participants who attended a welfare‐to‐wellness‐to‐work program called Work Wellness: The Basics that is based in an agency called Wellness Works!. Measures: A demographic survey, Rosenberg's Self‐Esteem scale, and qualitative interviews were used. Results: Even with normal self‐esteem scores, the participants credited the program with decreasing negative thoughts and improving self‐esteem. The themes identified include program, self‐esteem, mental health, and domestic violence. Conclusion: Information about the benefits of a holistic wellness program and its relationship with self‐reported enhanced self‐esteem can be used to assist with health promotion, policy, and the development of innovative programs that assist with transition from public assistance.     

Relationships between coping, coping resources and quality of life in patients with chronic illness: a pilot study

Scand J Caring Sci; 2011; 25; 476–483
Relationships between coping, coping resources and quality of life in patients with chronic illness: a pilot study Background: In Sweden there are approximately about 3500 end‐stage renal disease (ESRD) and 250 000 chronic heart failure (CHF) patients. Objectives: The original purpose of the study was to determine differences between two groups of patients with chronic illness (ESRD and CHF) regarding the following study variables: coping, sense of coherence (SOC), self‐efficacy and quality of life (QOL). Following this, the aim was to explore the relationships between demographic variables (sex, age, educational level and living area) and QOL as well as between coping, SOC, self‐efficacy and QOL for the combined sample of patients with ESRD and CHF. Methods: A comparative and correlative design was used with a sample of 100 patients (n = 41 ESRD, n = 59 CHF). The data were collected during 2004, using four standardized questionnaires and regression analyses were conducted. Results: No significant differences were found between the two groups. Positive correlations were identified between SOC, general self‐efficacy and QOL, whereas negative correlations emerge between emotion‐focused coping, SOC, general self‐efficacy and QOL. SOC, general self‐efficacy and emotion‐focused coping explained 40% of the variance in QOL. Those with low SOC and general self‐efficacy showed negative correlations between emotion‐focused coping and QOL, whereas no such correlations were shown for those with high values on SOC and general self‐efficacy. Conclusions: The present results on coping and QOL correspond with previous research regarding how other groups with chronic illness handled their daily life. Preliminary results indicate that how individuals tackle their present situation is more important than which chronic illness they have. Women used more emotion‐focused coping than men, which constitute an important finding for further research.     

Self-organization in chronic pain: a concept analysis.

The purpose of this article is to examine the concept of self-organization in chronic pain using Rodgers' (2000) evolutionary approach. This article describes the antecedents, attributes, and consequences of self-organization in chronic pain. Self-organization in chronic pain may be achieved through the attributes of being believed, accessing credible resources, and taking action and responsibility. Self-organization occurs when the patient with pain develops a transformed identity, new insights, and is an active, in-control participant in care. Chronic pain is a common and costly problem, and recognition of the key attributes of self-organization in this condition is an important step in promoting positive health outcomes. Rehabilitation nurses play a key role in providing credible resources and working with the patient to take action and responsibility.     

Changes in self-esteem during a 3-year pre-registration Diploma in Higher Education (Nursing) programme

Nurses' self-esteem affects patient care. This study measured self-esteem of pre-registration nursing students over their 3-year training programme. Quantitative data were measured by the Professional Self-Concept Nursing Inventory and the Tennessee Self-Concept Scale. Students's self-esteem decreased during their training programme. Results indicate a need to address the damaging effects of the process of becoming a nurse.     

Effects of a music‐creation programme on the anxiety,self‐esteem,and quality of life of people with severe mental illness: A quasi‐experimental design

Many studies have shown that music therapy improves patients' symptoms. However, interventions using music creation as their core await further development for patients with severe mental illness (SMI). The current study investigated the effect of a music‐creation programme on the anxiety, self‐esteem, and quality of life of patients with SMI. A quasi‐experimental design using convenience sampling was adopted to recruit patients with SMI from a psychiatric day care centre. Participants were grouped based on their willingness to undergo an intervention (26 patients in the experimental group and 23 patients in the control group). The control groups participated in conventional mental rehabilitation therapy activities. The experimental group participated in a music‐creation session for 90 min every week over a 32‐week period. The outcome indicators before and after the intervention were assessed using the Hamilton Anxiety Rating Scale (HAM‐A), Rosenberg Self‐Esteem Scale (RSES), and World Health Organization Quality of Life‐BREF (WHOQOL‐BREF). Finally, the intervention effect was determined using generalized estimating equations (GEEs). After 32 weeks of intervention activities, the experimental group showed significant improvements in their HAM‐A total scores (P < 0.001) and RSES total scores (P = 0.005). Regarding quality of life, the improvements of the experimental group in terms of the psychological (P = 0.016) and social relationship domains (P = 0.033) were superior to those of the control group. Music‐creation programmes are recommended for inclusion in the routine rehabilitation activities of patients with SMI.     

The experience of adolescent women living with spina bifida part I: self-concept and family relationships.

Adolescent women with spina bifida (SB) face unique and diverse challenges. The purpose of this qualitative component of a larger mixed-method study on adaptation was to heighten rehabilitation nurses' understanding of self-concept and family relationships during adolescence. Interviews were conducted with 31 adolescent women and analyzed for themes. The women described a range of experiences, including challenges of typical adolescence, specific concerns about living with SB, school-based stressors, and incidences of teasing and bullying. The overall self-concept was primarily positive, despite the diverse stressors encountered. A significant source of strength was the close relationships with parents, although an undercurrent of tension related to independence was also expressed. Results from this study support the need for rehabilitation nurses to address not only the functional status but also the well-being and psychosocial challenges of adolescent women with SB.     

An integrative review and theoretical examination of chronic illness mHealth studies using the Middle‐Range Theory of Self‐care of Chronic Illness

Self‐management, or self‐care, by individuals and/or families is a critical element in chronic illness management as more care shifts to the home setting. Mobile device‐enhanced health care, or mHealth, is being touted as a means to support self‐care. Previous mHealth reviews examined the effect of mHealth on patient outcomes, however, none used a theoretical lens to examine the interventions themselves. The aims of this integrative review were to examine recent (e.g., last 10 years) chronic illness mHealth empiric studies and (1) categorize self‐care behaviors engaged in the intervention according to the Middle‐Range Theory of Self‐care of Chronic Illness, and (2) conduct an analysis of gaps in self‐care theory domains and behaviors utilized. Methods included: (1) Best practice study identification, collection, and data extraction procedures and (2) realist synthesis techniques for within and across case analysis. From a pool of 652 records, 33 primarily North American clinical trials, published between 2010 and 2019 were examined. Most mHealth interventions used apps, clinician contact, and behavioral prompts with some wireless devices. Examination found self‐care maintenance behaviors were supported in most (n = 30) trials whereas self‐care monitoring (n = 12) and self‐care management behaviors (n = 8) were less so. Few trials (n = 2) targeted all three domains. Investigation of specific behaviors uncovered an overexamination of physical activity and diet behaviors and an underexamination of equally important behaviors. By examining chronic illness mHealth interventions using a theoretical lens we have categorized current interventions, conducted a gap analysis uncovering areas for future study, and made recommendations to move the science forward.     

Therapeutic approaches to fibromyalgia in the Netherlands: a comparison between 1998 and 2005

Rationale In this study, information was gathered from five disciplines on their usual management methods for fibromyalgia (FM) in order to asses whether treatment regimens have changed in the Netherlands during a period of 6 years. In addition, insight was gained into the therapeutic motives of the professionals. Method A questionnaire was sent to a sample of 150 persons per discipline: general practitioners (GPs), rheumatologists (RMTs), rehabilitation specialists (RS), physical therapists and psychologists. Results The overall response rate was 40.4%. The referral behaviour changed (significantly), especially between GPs and RMTs. An increased choice for aerobic exercise (RS: P = 0.023) and multidisciplinary therapy (RMT: P = 0.046) was found. RMTs and RS showed decreased medication prescribing (RMT: P = 0.024). Preferences of treatment for FM differ per discipline. The choice is principally made on the basis of subjective, professional group‐bound factors. Particularly for GPs, dynamic patient factors are an important motive in the management of FM. Conclusions Despite the fact that most changes found are in conformity with the literature, the absolute application percentages of recommended therapies are still very low. The differences in practice between the several disciplines seem explicable on the basis of the factors that have a prominent role in the choice of a therapy for FM. This study underlines the need for further research into methods and processes of the management of FM, and their clinical effectiveness. An effective way of dissemination, especially of guidelines, is essential.     

Physical activity and physical self-concept: comparison between children with and without asthma

AIM: This paper reports a study comparing levels of physical activity and physical self-concepts between children with and without asthma. BACKGROUND: Childhood asthma has become one of the world's most prevalent chronic illnesses. Its symptoms are thought to prevent children from participating in some forms of physical activity. However, asthma treatment guidelines are increasingly suggesting that children with asthma can participate in the same physical activities as healthy children for the same reasons-- to promote normal growth, physical development and psychological health. METHOD: Between October 2001 and May 2002, 120 children between the ages of 9 and 11 with mild and moderate asthma were recruited from three paediatric asthma clinics in Taiwan, and 309 non-asthmatic children in the same age group were selected from four elementary schools in Taiwan's three largest cities. Participants were asked to record physical activity levels for 3 days out of the past 7 days and to fill out a 29-item Physical Self-Concept Inventory. Physical activities were classified as moderate-to-vigorous physical activity or vigorous physical activity. Physical self-concept was measured in terms of perceived flexibility, endurance, appearance, agility, obesity and strength. RESULTS: Asthma was the primary factor determining vigorous physical activity levels, but gender was the primary factor determining physical self-concept, especially in terms of endurance, obesity and strength. No statistically significant relationships were noted between asthma and gender in terms of effects on physical activity and physical self-concept. CONCLUSIONS: Asthma interferes with children's ability to participate in vigorous physical activity but not in moderate-to-vigorous physical activity. Gender determines primary differences in physical self-concept. Appropriate exercise recommendations are necessary to encourage children with asthma to engage in vigorous physical activity for normal growth.     

Mental health promotion of Iranian university students: the effect of self-esteem and health locus of control

The purpose of this study was to investigate the effect of self-esteem and health control belief on promoting students' mental health. In so doing, 144 students from two medical universities in the north-east of Iran were recruited into study. They were pair-matched and randomly assigned to case and control groups. The data were collected through Goldberg's General Health Questionnaire-28, Multidimensional Health Locus of Control and Rosenberg's Self-Esteem Scales. The results showed that there were significant differences between the groups before and after the intervention. The external components of health locus of control (chance and powerful others) showed a significant decrease but the internal health locus of control and self-esteem revealed a significant increase after the intervention (P < 0.0001). Moreover, the students' mental health had a significant increase after 3 months of intervention (P < 0.0001). The findings emphasize that the programme can improve the health locus of control beliefs, self-esteem and mental health promotion of the students. This will require additional monitoring and uninterrupted attempts to be effective.     

African Americans with cancer: the relationships among self-esteem,locus of control,and health perception

The purpose of this study was to describe and examine the relationships among self-esteem, locus of control, and perceived health status in African Americans with cancer and to identify predictors of perceived health status. A convenience sample of 95 oncology outpatients at two large medical facilities completed the Tennessee Self-Concept Scale, the Multidimensional Health Locus of Control Scale, and the Cantril Ladder, a measurement of perceived health. In an audiotaped interview two open-ended questions were used to clarify participants' Cantril Ladder scores. A significant positive relationship was discovered between self-esteem and powerful others health locus of control (p <.05). Participants tended to view God as the Powerful Other capable of influencing their health and well-being. Self-esteem and an internal health locus of control were found to account for 23% of the perceived variance in health status. In addition, interview data indicated that participants with normal to high levels of self-esteem and an internal health locus of control perceived their state of health and well-being positively.