"I'm still dad": The Impact of Scleroderma on being a Father.

The purpose of this study was to describe the experiences of fathers with scleroderma. Ten fathers with scleroderma were interviewed by telephone. Interviews were tape-recorded and transcribed verbatim. Two key themes emerged related to the emotional impact of the illness and the day to day realities of the illness with the unpredictability and rareness of the illness leading to ongoing feelings of isolation and fear of mortality. The negative influences of being a father with scleroderma included the inability of the fathers to participate in physical activities with their children such as outdoor sports and throwing balls. Being able to spend quality time with the child was a positive influence of the illness.

Workplace barriers encountered by employed persons with systemic sclerosis.

BACKGROUND: Systemic sclerosis (SSc) is an auto-immune connective tissue disease characterized by fibrosis of skin, blood vessels, and internal organs that results in significant disability. OBJECTIVE: To identify the work barriers faced by people with systemic sclerosis (SSc) in maintaining employment. METHODS: Thirty-six people with SSc who were working more than 8 hours per week completed the Work Experience Survey, which contains lists of potential work barriers, including the ability to travel to and from work; get around at work; perform essential job functions, including physical, cognitive, and task-related activities; work with others; and manage work conditions. RESULTS: Thirty-three participants completed and returned the questionnaires, most of whom were female, and working full time and in professional careers. Principal disease symptoms included fatigue, Raynaud's phenomenon, esophageal involvement, and leg or hand/wrist pain. All participants reported some barriers with a mean of 18 barriers per participant. At least three quarters of participants cited outside temperature (82%), cold temperatures inside the workplace (76%), and household work (76%), as barriers. The next most common barriers were using both hands (64%), arranging and taking part in social activities (64%), being able to provide self-care (61%) and working 8 hours (58%). CONCLUSION: Participants reported a wide range of barriers, from cold temperatures, to physical job, fatigue related, and non-workplace demands, in maintaining the worker role. The barriers reflect the disease symptoms they reported. Identifying workplace barriers facilitates the creation of job accommodations or adaptations that will allow people with SSc to continue working.

Mothers with chronic disease: a comparison of parenting in mothers with systemic sclerosis and systemic lupus erythematosus.

This study compared parenting ability in mothers with systemic sclerosis (SSc) and systemic lupus erythematosus (SLE), two chronic, autoimmune, connective tissue diseases that primarily affect women. Seventy-four mothers with SSc and 68 mothers with SLE completed self-report questionnaires on demographic characteristics, pain, fatigue, occupational performance, and parenting. Results showed that mothers with SSc were slightly older, were more educated, and had decreased occupational performance. Mothers with SLE had more pain and fatigue. There were no significant differences between mothers with SSc and SLE who had children 5 years of age and younger. However, there were significant differences between the mothers with SSc and SLE who had children aged 6 to 18 years on four items on the Parenting Disability Index: playing games with child, getting up with child during the night, keeping child out of unsafe situations, and helping child solve personal/social problems. These differences may be due to differences in the levels of pain, fatigue, and occupational performance, possibly stemming from differences in disease manifestations.

Taking charge of systemic sclerosis: a pilot study to assess the effectiveness of an internet self-management program.

OBJECTIVE: To assess the effects of an internet self-management program for systemic sclerosis on self-efficacy, health efficacy, and management of care, pain, fatigue, functional ability, and depression. METHODS: Participants logged on to a password-protected web site and completed modules and learning activities at their own pace over 10 weeks. Participants were encouraged to log on to the discussion board, participate in an interactive component of the web site, and respond to questions posted for each module. Participants completed pre- and postintervention questionnaires on perceived self-efficacy, health efficacy, ability to manage care, functional disability,depression, pain, and fatigue. They also completed an 8-question evaluation form regarding satisfaction with the web site, program content, discussion boards, and learning activities. RESULTS: Sixteen participants completed the study and postintervention measures. There were significant improvements in mean scores for ability to manage care (effect size [ES] 0.62, P = 0.025) and health efficacy (ES 0.72, P = 0.012), and significant decreases in fatigue (ES 0.55, P = 0.045) and depression (ES 0.71, P = 0.013). Self-efficacy improved, but not significantly. The evaluation of the program revealed mean scores ranging from 4.2 (web site was visually appealing) to 4.9 (information presented clearly) on a 5-point scale, where 5 is most satisfied. CONCLUSION: These findings from this pilot study suggest that a self-management program delivered using an internet format can lead to statistically significant changes in health efficacy and management of care, fatigue, and depression. These results need to be confirmed with a larger randomized controlled trial with a longer followup period.

The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.

INTRODUCTION: Psychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN. METHODS AND ANALYSIS: SPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions. ETHICS AND DISSEMINATION: The use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Evaluation of a mail-delivered, print-format, self-management program for persons with systemic sclerosis.

Patient self-management programs usually require participants to attend group sessions, which can be difficult for individuals with mobility issues. In addition, many programs are not disease specific. The purpose of this study was to evaluate the effects of a mail-delivered self-management program for individuals with scleroderma (SSc). The program consisted of a workbook and exercise DVD that provided information on medical aspects of the disease, dysphagia, fatigue management, advocacy, activities of daily living, oral hygiene, skin and wound care, psychosocial changes, exercises, and other features of the condition. Participants provided feedback on the effects of the self-management program by responding to questions on demographic and six self-report questionnaires, keeping a health log, and participating in a program evaluation interview. A total of 49 participants completed the program and returned the postintervention questionnaires. Participants consistently reported that the program was easy to use. Depression, fatigue, and pain decreased, and hand function, self-efficacy for controlling pain, and self-efficacy "other" improved; however, the only statistically significant change was in self-efficacy for pain. This is the first study to develop and assess the effects of a mail-delivered format for self-management for people with SSc. A self-management program should help individuals with SSc develop self-management strategies to manage this complex disease and advocate for themselves to promote better health.

Experiencing work as a daily challenge: the case of scleroderma.

OBJECTIVE: Little is known about the physical and discretionary aspects of work that people with scleroderma (SSc) find difficult. This article describes the findings from a study that explored the challenges and adaptations made by individuals with SSc to continue to work. PARTICIPANTS: Thirty-two employed individuals with SSc participated. Participants were predominantly women (82%), white (79%), and well educated (M = 16.9 years). The average age was 47.3 years, and 60.6% were married. Mean disease duration was 9.7 years, and 56.2% had diffuse SSc. Mean years on the job was 10.2 (SD ± 8.8), and 71.9% worked at least 35 hours per week. METHODS: Participants engaged in a single structured interview about work-related challenges and adaptations. Content and thematic analysis was used to identify key themes across the interviews. RESULTS: Employees with SSc experienced Work as a daily challenge. This central theme described the general work experience for most participants. Three subthemes described their specific experiences: The work environment: Opportunities, challenges, and accommodations; Career planning; and Supportive others. CONCLUSIONS: The participants were anxious to find scenarios that allowed them to continue to work. Worksite accommodations and flexibility in scheduling can make the difference between working and disability.

The health behavior of Sri Lankan Buddhist nuns with type 2 diabetes: duty, devotion, and detachment.

Sri Lanka has experienced an increase in the rate of type 2 diabetes. Selfmanagement of diabetes among Sri Lanka's Buddhist nuns, who depend on food donations and limit physical activity in accord with the monastic code of conduct, presents unique challenges and has not been previously studied. The purpose of this focused ethnographic study of 10 Buddhist nuns was to understand how they managed their illness within the restrictions on diet and physical activity. Three themes-duty, devotion, and detachment-explained and described their health behavior regarding type 2 diabetes within the context of their daily routines and obligations.

Parenting: the forgotten role of women living with systemic lupus erythematosus.

This study investigates parenting and the impact of symptoms, such as pain and fatigue, on the parenting abilities of mothers with systemic lupus erythematosus (SLE). Participants were 68 mothers with SLE who had children 18 years of age and younger. The mothers completed surveys consisting of a demographic questionnaire and self-report instruments such as the Parenting Disability Index (PDI), Health Assessment Questionnaire, Pain Visual Analog Scale, and Multidimensional Assessment of Fatigue Scale. Analysis of variance was used to compare parenting abilities for women with younger children (birth -5 years) and women with older children (6-18 years) and women with children in both age groups. There were no significant differences between the three groups. However, having more fatigue, functional disability, and less education resulted in higher PDI scores in all groups. Mothers with children younger than age 5 reported that having energy to talk/listen to a child was the most difficult parenting task. Mothers with children between 6 and 18 years of age reported the most difficulties with maintaining discipline, playing games, shopping, and doing household chores. Symptoms of lupus have a significant influence on mothering roles. In daily practice, health care providers may want to consider inquiring about the impact SLE may be having on their patients' parenting roles.

Perceived parenting ability and systemic sclerosis.

OBJECTIVE: The purpose of this study was to compare perceived parenting abilities in mothers with systemic sclerosis (SSc) based on the subtype of SSc and age group of their children, and to examine how the degree of pain, fatigue and functional ability relates to parenting ability. METHODS: In this cross-sectional survey, 74 mothers with SSc, who had children aged 18 years or younger living at home with them, completed a series of questionnaires online or on paper. The questionnaires included the Parent Disability Index (PDI) and surveys regarding demographic information, pain (visual analogue scale), fatigue (Multidimensional Assessment of Fatigue) and functional ability (Health Assessment Questionnaire). RESULTS: An analysis of variance revealed that the mean age of the mother (F(2,71) = 7.9; p < 0.01), mean PDI score (F(2,68) = 5.4; p < 0.01) and mean pain score (F(2,71) = 4.0; p = 0.02) were each associated with the age group of the children. The univariate analysis of variance results showed that dichotomized pain (F(1,69) = 13.3; p < 0.01), fatigue (F(1,69) = 18.9; p < 0.01) and disability (F(1,69) = 9.8; p < 0.01) were each associated with the PDI score. The multivariate analysis of variance results showed that dichotomized pain (F(1,68) = 7.5; p < 0.01) and fatigue (F(1,68) = 12.7; p < 0.01) were associated with the PDI. CONCLUSION: Mothers with SSc report difficulty with parenting, which can be related to the severity of the symptoms. The findings suggest that interventions to reduce pain and fatigue may improve perceived parenting ability.

Factors related to self-efficacy in persons with scleroderma.

PURPOSE: Scleroderma (SSc) is rare, and few studies have examined self-efficacy in persons with the disease. Self-efficacy is one precursor that has been shown to initiate changes in behaviour when managing chronic disease. The objective of this study was to explore the levels of self-efficacy in persons with SSc, compare self-efficacy in persons with limited or diffuse SSc and determine correlations between self-efficacy, physical function and psychological variables. METHODS: Sixty-two participants with SSc completed measures assessing self-efficacy, depression, fatigue, pain, hand function and activity limitations. The mean age of participants was 52.9 years. The mean educational level was 15.8 years. Sixty-seven per cent were married and 87.1% were women. Thirty participants had diffuse SSc, 27 had limited SSc and five were unclassified. RESULTS: The only significant differences between the two disease subtypes were in hand function and self-efficacy function subscale scores. Total self-efficacy scores significantly correlated with marital status, employment, self-reported health, depression, functional ability, fatigue, pain and hand function. Similarly, self-efficacy function scale scores correlated significantly with employment, self-reported health, functional ability, pain and hand function. Self-efficacy pain scale scores correlated significantly with fatigability. The self-efficacy other scale scores correlated significantly with depression and fatigability. Participants with higher levels of pain and depression, more fatigue, more general disability and more hand disability had lower self-efficacy. CONCLUSION: Self-efficacy correlates with physical function and psychological variables, and could predict how patients manage their health. Self-efficacy may increase through participation in educational programmes focusing on self-management of these variables.

Occupation of motherhood: challenges for mothers with scleroderma.

OBJECTIVE: We sought to identify which aspects of motherhood are difficult for mothers who have scleroderma along with variables associated with mothering. METHOD: Participants were 75 mothers with scleroderma with a child between birth and 18 years old living with them. They completed the Parent Disability Index (PDI); a demographic questionnaire; and measures of pain, fatigue, and activity limitations. RESULTS: Mothers with children ages 5 or younger reported that getting up and down from the floor to play with their children was the most difficult task, and mothers with children between 6 and 18 years old reported that playing with their children outdoors, doing household chores, and shopping were the most difficult tasks. Significant correlations were found between PDI and pain, fatigue, and activity limitations. CONCLUSIONS: Mothers with scleroderma have difficulty with aspects of motherhood. The findings that pain, fatigue, and activity limitations were related to mothering suggest areas for occupational therapy intervention.

Diagnosis: a liminal state for women living with lupus.

Women with systemic lupus erythematosus (SLE or lupus) often experience a protracted diagnostic period in which their symptoms are treated as medically unexplained. Although they know they are ill, their symptoms have not been validated as indicative of disease by a health care professional. Consequently, the diagnostic period can be viewed as liminal, the middle stage in the rites of passage and what Turner (1969/1997) has labeled "betwixt and between." Drawing on the analysis of narratives solicited from 23 women recruited from online lupus support groups, I explore the gendered nature of diagnosis for women with lupus using van Gennep's (1960) rites of passage as a conceptual framework.

Recruiting participants for research from online communities.

Increasing numbers of people use the Internet for information and support about health and illness experiences. Likewise, researchers are increasingly turning to Internet communities as recruitment sites for research participants. Based on the use of online recruitment for a study of women living with lupus, the challenges and strategies associated with this method are discussed. How participants were obtained through posts on Web sites, the role of gatekeepers in accessing online communities, issues associated with list lurkers and posters, and challenges to authenticity when working with a sample recruited from this environment are covered, as are strategies for addressing identified problems.

Become your own advocate: advice from women living with scleroderma.

PURPOSE: Systemic sclerosis (SSC) affects 300,000 people in the USA and has a significant effect on an individual's functional ability. The purpose of this study was to outline the key components of living with the illness and to identify the information that those who are newly diagnosed would need to initiate a successful course of disease self-management. The results will provide the groundwork for development and testing of a self-paced education program for patients with SSC. METHOD: Focus groups were conducted with 11 women diagnosed with SSC. RESULTS: Analysis of the transcripts yielded three themes, Secure Effective Medical Management, Live Your Life, and Learn Everything You Can. The thread Become Your Own Advocate wove these three themes together and illustrated that taking control of SSC is ultimately a function of self-advocacy. CONCLUSION: For patients with SSC, taking control of their illness was a necessary component of maintaining the highest quality of life possible. A positive attitude, a strong support system, a commitment to moving forward with life, and access to high-quality, timely information all provided the participants with the tools to develop and implement a strategy of self-advocacy in disease management.

Managing a medically and socially complex life: women living with lupus.

Systemic lupus erythematosus is a systemic autoimmune illness that affects women more frequently than men and disproportionately affects women of color. Because so little is known about living with lupus, the author undertook a qualitative study to identify salient aspects of affected women's daily experiences. Seven women with lupus participated in three interviews, each separated by 1 month, and they also maintained a daily symptom journal. In addition, 23 women recruited from the Internet submitted narrative accounts of their experiences of living with lupus. Analysis of the findings suggests that living with lupus involves managing a medically and socially complex life. The complexity of life with lupus is dimensionalized by the overlapping themes, identified as a life of uncertainty, a shifting sense of identity, and managing the financial burden of illness.

Struggle as the context of household health work for Mexican American women.

A focused ethnographic study was conducted among 13 moderately to highly acculturated American mothers of Mexican ancestry to determine how they influence the health of their family members. Using the World Health Organization (WHO) definition of health (a state of physical, mental, and social well-being and not merely the absence of disease) as a guide for interview questions, we conducted 32 in-depth interviews with study participants. The thread of struggle ran through each woman's narrative. Women's process of struggle is presented as one way to conceptualize the gendered nature of household health work.

Gentle hugs: Internet listservs as sources of support for women with lupus.

Systemic lupus erythematosus is a chronic autoimmune illness that usually affects women during their childbearing years. Women with lupus must learn to live with a variety of unpredictable symptoms, making a consistent source of support and information important for day-to-day illness management. For many women, the Internet fills this need. This article reports the findings of a qualitative study of 3 Internet listservs that provide support and information to the community of people living with lupus. Five thematic areas that describe the type of information and support available to listserv participants are described and the benefits of listserv participation are discussed.

Creating healthy environments: household-based health behaviors of contemporary Mexican American women.

This article describes the household-based health behaviors of a sample of contemporary Mexican American women.1 Using the Household Production of Health (HHPH) as a conceptual framework and ethnographic methods of inquiry, 13 moderately to highly acculturated women of Mexican ancestry participated in multiple interviews about their health beliefs and household health behaviors. This article examines the findings related to the following research question: What are the health-producing and help-seeking behaviors (proximate determinants of health) used by Mexican American women to produce health? Themes focusing on creating healthy environments and treating illness are discussed. Awareness of the activities that women use to create and support household health can enhance the practice of nurses interested in supporting women's health work and improving health outcomes in the Mexican American community.