Finding a needle in a haystack: The identification of clinical practice guidelines for psychosocial oncology through an environmental scan of the academic and gray literature.

OBJECTIVE: Clinical practice guidelines (CPGs) are evidence-based tools well-suited to translate the latest research evidence into recommendations for routine clinical care. Given the rapid expansion of psychosocial oncology research, they represent a key opportunity for informing the treatment decisions of overburdened clinicians, standardizing service delivery, and improving patient-reported outcomes. Yet, there is little consensus on how clinicians can most effectively access these tools and little to no information on the current availability and scope of CPGs for the range of psychosocial symptoms and concerns experienced by patients with cancer. METHOD: Our environmental scan consisted of an academic and gray literature designed to identify currently available CPGs addressing a range of cancer-related psychosocial symptoms. RESULTS: Findings revealed a total of 23 existing psychosocial oncology CPGs that met full eligibility criteria. The gray literature search was found to be more effective at identifying CPGs (n = 22) compared to the academic search (n = 9). CONCLUSION: Several concerns arose from the systematic search. The limited publication of CPGs in peer-reviewed journals may make clinicians and stakeholders more hesitant to implement CPGs due to uncertainties about the methodological rigor of the development process. Further, many existing CPGs are outdated or failed to be updated according to guideline recommendations, meaning that the recommendations may fall short of their purpose to translate up-to-date research findings. FUTURE DIRECTIONS: Future research should seek to systematically assess the quality of existing psychosocial oncology CPGs and shed light on the current state of implementation and adherence in clinical practice in order to better inform guideline developers on the current needs of the psychosocial oncology community.

Evaluating health perceptions of soft-tissue sarcoma patients using the Wilson-Cleary Model to identify key targets for improving outcomes and quality of care.

INTRODUCTION: Soft-tissue sarcoma (STS) is a rare cancer of the connective tissues requiring invasive treatment. Due to the complexity of treatment, STS patients experience more functional impairment and disability than other oncologic populations. Given that extant literature is unclear and exclusively focused on physical function, the objectives of this study were to use the Wilson-Cleary Model of HRQL to evaluate the extent to which biological function (tumor site, depth and size), symptoms (fatigue, pain, anxiety/depression), and functional status are associated with the health perceptions of soft-tissue sarcoma patients 12 months post-op. METHODS: Data were drawn from an inception cohort study at the McGill University Health Centre. Inclusion criteria included 18 years of age and a biopsy-confirmed diagnosis of STS. Those with evidence of metastasis at diagnosis or less than 12 months of follow-up were excluded. Statistical analyses included T-tests, Pearson correlations, and multiple linear regression. RESULTS: 331 patients were included (185 males, 146 females) with mean (SD) ages of 56 (17). Significantly more females reported pain and anxiety/depression. Self-reported function was significantly higher in males. Overall, the regression model explained 53 % of the variance in health perceptions in males, and 48 % in females. Only self-reported function was significantly associated with health perceptions in males (B = 0.34) and females (B = 0.48). Further, compared to females without pain, females with pain perceived their health as significantly worse. CONCLUSION: Evaluating health perceptions with a multidimensional lens revealed new information about the STS patient experience. Findings suggest that key targets include routine psychosocial distress monitoring and addressing rectifiable disability-related barriers promptly.

Obstacles and facilitators of cancer-related dyadic efficacy experienced by couples coping with non-metastatic cancers.

Introduction: Cancer-related dyadic efficacy is an individual's confidence to work together with a partner to conjointly manage the effects of cancer and its treatment. In other health contexts, higher levels of dyadic efficacy have been associated with fewer symptoms of psychological distress and higher ratings of relationship satisfaction. The aim of the current study was to explore patient and partner perspectives on what obstructs and facilitates cancer-related dyadic efficacy. Methods: These aims were accomplished through a secondary analysis of data collected as a part of a collective qualitative case study. Participants (N = 17 participants) were patients undergoing treatment or recently completed treatment (within 6 months) for a non-metastatic cancer and their partners. To enable in-depth discussions among participants, data was collected through five focus groups. Participants described obstacles and facilitators of dyadic efficacy as dimensions of a common influence. Consistent with these descriptions, reflexive thematic analysis was used to identify influences on cancer-related dyadic efficacy and their subsequent obstructive and facilitative dimensions. Results: Four main categories of influence with the potential to obstruct or facilitate cancer-related dyadic efficacy were identified along with their subthemes: appraisals of the couple relationship (quality and togetherness), communication (pattern and interest in information), coping (strategy and evaluation), and responses to change (in tasks and roles and sex life). Eight obstructive and seven facilitative dimensions of these subthemes were described.Discussion: This first analysis of obstacles and facilitators of couples' cancer-related dyadic efficacy capitalized on the experiential expertise of individuals with cancer and their partners. These thematic results are instructive for the design of dyadic efficacy-enhancing interventions for couples coping with cancer.

Evidence-Based Practice in Psychosocial Oncology from the Perspective of Canadian Service Directors.

Evidence-based practices facilitate the effective delivery of psychological services, yet research on the implementation of evidence-based practices in psychosocial oncology (PSO) is scarce. Responding to this gap, we interviewed a diverse sample of 16 directors of Canadian psychosocial oncology services about (a) how evidence-based practices in psychosocial oncology are being implemented in clinical care and how the service quality is monitored and (b) what are barriers and facilitators to evidence-based practice in psychosocial oncology services? Responses were grouped according to three main themes emerging from the data: screening for distress and referral to PSO services, delivery of evidence-based PSO services, and monitoring of PSO services. Our findings highlight facilitators and barriers to evidence-based practice in psychosocial oncology, which were related to the political, social, economic, and geographic contexts. The stepped care model was identified as a science-informed approach to improve the cost-effectiveness of triage systems and treatment delivery while facilitating more equitable access to services. Other facilitators included electronic screening and referral systems as well as protected time for clinicians to communicate more within their teams and participate in knowledge exchange. High caseloads presented a major barrier to acquiring and implementing evidence-based practices. Recommen-dations include increased support for evidence-based onboarding and continued training as well as for data collection regarding service needs, quality, and quantity to inform service monitoring and advocacy for more financial resources. Our findings are relevant to healthcare decision makers, implementation researchers, as well as service directors and practitioners providing psychosocial oncology care.

Exploring healthcare professionals' experiences with informal family cancer caregiving.

Caring for a family member with cancer is often associated with significant cognitive, emotional, and physical demands. Although considerable research has explored informal cancer caregiver role burden, research has seldom focused on the experiences of individuals who hold the dual role of informal caregiver and healthcare professional. This qualitative study begins to explore this dual role experience. Participants (N = 12) who had at least 1 year of prior professional experience and cared for a family member with cancer were recruited conveniently from a large university-affiliated hospital in Montreal, Quebec. Individual face-to-face semi-structured interviews were conducted. Using thematic analysis, key themes were developed from verbatim transcripts: (1) salient dual role advantages, (2) significant challenges related to this role, (3) changes in professional practice as a consequence of informal caregiving, and (4) important palliative and end-of-life care access issues. Whereas professional knowledge helped advocate on behalf of patients, the dual role often came with over-solicitation from others, enhanced sense of responsibility, increased burden, and significant distress. Further study of critical ramifications linked to jointly enacting informal and professional caregiving across various health contexts should continue to inform supportive care strategies for this understudied yet increasingly prevalent segment of the caregiver population.

Psychometric evaluations of the Life Orientation Test-Revised (LOT-R), based on nine samples.

OBJECTIVE: The aim of this study was to examine psychometric properties of the Life Orientation Test-Revised (LOT-R). DESIGN AND MAIN OUTCOME MEASURES: The LOT-R was administered in five clinical samples, three samples of the adult general population, and one sample of adolescents. Seven of the studies were performed in Germany and two in Colombia. All of the sample sizes were above 300. RESULTS: Cronbach's alpha coefficients were between .57 and .75 for the eight adult samples, the correlations between the scales optimism and pessimism ranged from -.05 to -.37, and the coefficients of temporal stability (test-retest correlations) of the scales ranged from .43 to .69. There were no systematic age and gender effects observed in the nine studies. While the one-factor model of confirmatory factor analyses showed clearly insufficient fit indices among all of the samples, the two-factor model fit was markedly better. CONCLUSIONS: The LOT-R proved to be a suitable instrument for measuring dispositional optimism in patients and in the general population, though the sum score should be viewed with caution. Studies comparing the LOT-R mean scores of different samples need not take age and gender distributions into account.

Patient-identified early clinical warning signs of nodular melanoma: a qualitative study.

BACKGROUND: Nodular (NM) and superficial spreading melanoma (SSM) show different disease trajectories, with more rapid development in NM and fewer opportunities for early detection often resulting in worse outcomes. Our study described the patient-identified early signs of thin NM via comparisons to thin (≤ 2 mm) SSM and thick (> 2 mm) NM. METHODS: We conducted semi-structured interviews with NM and SSM patients and analyzed the data using thematic analysis. RESULTS: We enrolled 34 NM and 32 SSM patients. Melanoma early signs uniquely identified by patients with thin NM included white, blue or black coloration, "dot-like" size, fast changes in shape and color observed over 2 weeks, elevation and texture or "puffiness" over 6-12 months, and the sensation that the mole "did not feel right". Early signs reported by both thin NM and thin SSM patients included round or oblong shape, "jagged" border, pink/red, brown/reddish or dark coloration, "elevated like a pimple" or "tiny bump", fast color darkening, diameter growth, and border irregularity, and mole feeling "really itchy". CONCLUSIONS: We found evidence that early signs of NM can be self-identified, which has important implications for the earlier detection of this most aggressive type of melanoma by both health professionals and patients.

The impact of physician support on skin self-examination among melanoma patients: A serial mediation model with self-efficacy and intentions to perform skin exams.

OBJECTIVE: Melanoma is the most lethal of skin cancers; however, survival rates are excellent if the tumor is detected early. Clinical practice guidelines for melanoma follow-up care recommend regular skin self-examination (SSE) for individuals at high risk for melanoma. The current analyses tested whether self-efficacy for SSE and intention to perform SSE mediate the relationship between physician support for SSE and SSE behavior among a sample of melanoma patients. METHODS: We ran a serial mediation model on a cross-sectional sample of melanoma patients (n = 154) drawn from an observational study with longitudinal follow-up. RESULTS: Self-efficacy and intention to perform SSE sequentially mediated the relationship between physician support and SSE behaviors (ß = .31, t(152) = 3.61, p < .001 without mediators versus ß = .11, t(150) = 1.50, p = .14 with mediators), as supported by a significant total indirect effect (ß = .21, [95 % CI = .08-.35]). CONCLUSION: Self-efficacy for SSE and intention to perform SSE together explain the link between perceived physician support for SSE and the practice of SSE. PRACTICE IMPLICATIONS: Physician communication about the importance of SSE plays an important role in encouraging patient adherence to SSE recommendations and, thus, supporting early detection efforts.

Psychosocial distress in patients with cutaneous melanoma: validation of the Skin Cancer Index (SCI).

PURPOSE: The aim of this study is to examine the factor structure and psychometric properties of the Skin Cancer Index (SCI) in a sample of patients with melanoma. METHODS: This study uses data from an observational study with longitudinal follow-up examining predictors of skin self-examination in melanoma patients from Montréal, Canada. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were used to investigate the factor structure of the 15-item SCI scale. Correlations with other psychosocial measures of anxiety and depression, fear of cancer recurrence, quality of life, and emotional well-being were computed to examine construct validity. RESULTS: EFA results with 241 participants revealed a two-factor structure with acceptable fit and no significant cross-loadings. CFA results with a subsample of 173 participants examining the two-factor structure and second-order structure found equivalent fit for the two solutions. Cronbach's alpha for the total scale score and both subscales was high. Both factors showed positive associations with measures of anxiety and depression and fear of cancer and negative associations with quality of life and emotional well-being. CONCLUSION: Our study suggests that the SCI functions as a reliable two-factor scale assessing emotional and social distress in patients with melanoma, with the total SCI score assessing overall psychosocial distress.

Short and long-term barriers and facilitators of skin self-examination among individuals diagnosed with melanoma.

BACKGROUND: Melanoma can be lethal if not detected early and treated. Early detection can be facilitated via skin self-examination (SSE) and as such, SSE is part of melanoma follow-up care for individuals with a prior history, who face a life-long risk of reoccurrence. The objective of the current study was to identify short- and long-term predictors of SSE among melanoma survivors to inform future prevention interventions in high-risk groups. METHOD: This is an observational study with longitudinal assessments conducted with adult melanoma patients in active follow-up care. PRIMARY OUTCOME MEASURES: Behavioral outcomes, comprehensive SSE (checking up to 5 body areas in the last 3 months) and optimal SSE (checking the entire body at least monthly in the last 3 months) were assessed at 3, 12, and 24 months post a dermatological educational session on skin cancer prevention. T tests and chi square analyses were used to examine changes in outcomes from 3 to 12 and 24 months. Linear and logistic regression models were used to examine the association between predictors and the primary outcomes. RESULTS: Comprehensive SSE did not decrease significantly from 3 (M = 2.7, SD = 1.1) to 12 (M = 2.6, SD = 1.2) and 24 months (M = 2.4, SD = 1.2) post the education session, with the stronger predictor at all timepoints being intentions to perform SSE. Optimal SSE was higher at 3 months (59%) compared to 12 (46%) and 24 months (34%), with key predictors including self-efficacy and intentions to perform SSE and male sex at 3 months post; self-efficacy and reliance on medical advice at 12 months; and (lower) education and self-efficacy at 24 months. CONCLUSIONS: The key findings of this study are that 1) survivors maintain SSE behaviour over time, but rates of SSE performed in agreement with medical recommendations are higher immediately post standard dermatological education (i.e. usual care) and decrease somewhat over a 24-month period; and 2) the strongest psycho-social predictors of SSE are intentions and self-efficacy to perform the behavior, which are highly modifiable, for example via motivational interviewing and goal setting health interventions.

The FCR-1: Initial validation of a single-item measure of fear of cancer recurrence.

OBJECTIVE: Fear of cancer recurrence (FCR) is characterized by the fear, worry or concern that cancer will come back or progress. The negative effects associated with FCR are consistently identified by cancer survivors as one of their most prominent unmet needs. Current measures of FCR can be long, complex and burdensome for survivors to complete. The objective of the present study is to develop and validate a one-item measure of FCR. METHODS: The ability of the FCR-1 to detect change in FCR over time was analyzed using a repeated-measures ANOVA and paired-samples t-tests. Pearson correlations were used to measure the concurrent, convergent and discriminant validity of the FCR-1, and a ROC analysis was conducted to determine an optimal clinical cut-off score. RESULTS: The FCR-1 was found to be responsive to change in FCR over time. It demonstrated concurrent validity with the FCRI (r = .395, P = .010), and convergent validity with the Mishel Uncertainty in Illness Scale (r = .493, P = .001) and the Reassurance Questionnaire (r = .325, P = .044). Discriminant validity was confirmed when the FCR-1 did not significantly correlate with unrelated measures. A ROC analysis pinpointed an optimal clinical cut-off score of 45.0. CONCLUSIONS: The FCR-1 is a promising tool that can be incorporated in clinical and research settings. Due to its brevity, the care needs of highly distressed patients can be met quickly and efficiently. In research settings, the FCR-1 can reduce the cognitive burden experienced by survivors.

Operationalization of skin self-examination in randomized controlled trials with individuals at increased risk for melanoma: A systematic review.

OBJECTIVE: To investigate how skin self-examination was operationalized and the psychometric properties of the scales used to assess this behavior in randomized controlled trials (RCTs) testing interventions that promote SSE among individuals at increased risk for melanoma. METHOD: Eight scientific databases (e.g., Medline, EMBASE, CINAHL, PsycINFO) and four trial registries (e.g., Clinicaltrials.gov, UK Clinical Trails Gateway) were searched from inception through April 2, 2019. Three reviewers carried out the selection of relevant trials and conducted data extraction. RESULTS: The review identified 13 unique RCT's. The definition of skin self-exams, extrapolated from instructions provided to participants during the trials and reported in only 6/13 trials, included periodically checking the skin of the entire body, individually or with partners/mirrors, with or without tracking or monitoring tools, and using the ABCDE criteria to identify early signs of melanoma. There was variability in how skin self-examination behavior was measured with respect to item content, number of items, response format, and type of outcome variable used: continuous or binary). No validity evidence and minimal reliability evidence for the measures were identified. CONCLUSIONS AND PRACTICE IMPLICATIONS: Future studies are needed to establish the psychometric properties of measures assessing skin self-examination.

The role of self-compassion in the relationship between attachment, depression, and quality of life.

BACKGROUND: Self-compassion may be shaped by early attachment experiences, and has been linked to mental health and well-being. This study examined the role of two distinct features of self-compassion, self-warmth and self-coldness, in the relationship between attachment insecurity and depression as well as quality of life in a general population sample in Germany. METHODS: Participants (N = 2,253; 53.4% female, Mage 50 years) completed the Self-Compassion Scale (SCS), Adult Attachment Scale (AAS), Beck Depression Inventory-Fast Screen (BDI-FS), and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Mediation analysis was used to examine whether insecure attachment predicted increased symptoms of depression and decreased quality of life through decreased self-warmth and increased self-coldness. RESULTS: Attachment-related anxiety and avoidance had a significant direct effect on depressive symptoms and significant indirect effect via self-warmth and self-coldness. The indirect effect via self-warmth appears to be of negligible magnitude. Attachment-related anxiety and avoidance had a significant direct effect on quality of life, and significant indirect effect via self-coldness. The indirect effect via self-warmth was not statistically significant, speaking against self-warmth as a relevant mediator. LIMITATIONS: Causal conclusions cannot be drawn based on cross-sectional research design. All measures were based on participant self-report. CONCLUSIONS: This study contributes to a more differentiated understanding of how attachment insecurity and self-compassion may contribute to affective disorders. Findings suggest that self-coldness may be particularly relevant in affective disorders and when addressing relational struggles, with both theoretical and clinical implications for psychotherapy and future research.

Scleroderma patient perspectives on social support from close social relationships.

Purpose: People with rare diseases must cope with many physical and psychological challenges; an endeavor that can be difficult to carry out without external support. The purpose of this study was to understand how patients with scleroderma perceive the social support they need and receive from close relationships to better manage their disease.Method: Four focus groups with patients (N = 19) were conducted. A semi-structured topic guide was used. Discussions were recorded and transcribed, and thematic analysis was performed.Results: Patients reported receiving emotional, informational, and instrumental support, with emotional support being a priority for them. Patients also referred to relational factors (i.e., communication style, active engagement, complementarity) that affected the social support received. More specifically, engaging in honest communication, carefully choosing sources of support, and having close relationships motivated to learn and get involved enhanced support. In contrast, patients who avoided interacting with others or speaking about scleroderma and close relationships with a lack understanding or involvement hindered support.Conclusions: Patients might benefit more from interventions aiming at coping with scleroderma as a collective. Findings from this study help better understand the unique experiences of scleroderma patients while receiving support from close relationships.Implications for RehabilitationPeople with scleroderma may benefit from receiving different types of support from their close social relationships, including emotional, informational, and instrumental support.Professionals working in the area of rehabilitation should encourage patients to identify close social relationships who have specialized knowledge and skills (e.g., comfort looking for resources and information on the Internet) to help them cope better with the challenges associated with scleroderma.As part of the proposed treatment, rehabilitation professionals should encourage patients to actively communicate their social support needs to close social relationships, as well as maintain an open and honest line of communication with them, which will improve their capacity to understand the patient and provide appropriate support.Rehabilitation professionals may support people with scleroderma by encouraging them to seek support from their close social relationships, but also by providing these close relationship with information and supportive services to learn new skills and better cope with their own distress.

Skin Self-Examination: Partner Comfort and Support During Examinations as Predictors of Self-Efficacy in Patients At Risk for Melanoma Recurrence.

BACKGROUND: Skin self-examination (SSE) is an effective method for melanoma survivors to detect potential cancerous growths sooner. OBJECTIVES: The purpose of this study was to examine whether the SSE self-efficacy of patients with melanoma and their partners is affected by their partners' comfort and support during skin examinations. METHODS: 100 patient-partner dyads completed a 25-item sociodemographic questionnaire. Fifty-two partners attended an education session with the patient on skin examinations and the early detection of melanoma. All patients attended the education session. FINDINGS: Having their partners attend the education session, as well as being supportive and comfortable with skin examinations, significantly predicted patients' self-efficacy with SSEs. In addition, male patients were found to be significantly more comfortable with partner-assisted skin examinations and reported feeling more supported by their partner than female patients.

Development and initial validation of the Self-Efficacy for Skin Self-Examination Scale in a Canadian sample of patients with melanoma.

PURPOSE: Melanoma is the deadliest type of skin cancer, although survival rates are high if detected early. Skin self-examination (SSE) is a health behaviour that can lead to early detection of melanoma and more positive health outcomes. Self-efficacy for SSE is a potential predictor of engaging in skin self-exams. However, no standardized measures of self-efficacy for SSE are currently available. The present study reports on the development and initial validation of a measure assessing self-efficacy for SSE. METHOD: Based on a literature review, including previous studies assessing this construct, the research team developed 9 items capturing confidence in one's ability to conduct SSE. Items were subsequently revised by the research team and two dermatologists, resulting in the elimination of 4 items and modifications to the response options. The final 5-item Self-Efficacy for SSE scale was administered to a sample of 242 melanoma patients recruited from local hospitals. We assessed the scale's factor structure through exploratory factor analysis and the internal consistency with Cronbach's alpha. Scale scores were correlated with intentions to perform SSE, physician support for SSE, skin cancer-specific distress, general distress, and sociodemographic variables to assess convergent and divergent validity. RESULTS: The scale was found to be unifactorial with adequate model fit, have acceptable internal consistency (Cronbach alpha = 0.74), and initial evidence of convergent and divergent validity, as indicated by the scale correlating with physicians' support for SSE (r = 0.30, p < 0.01), intention to perform SSE (rs = 0.21, p < 0.01) and a weak correlation with general distress (r = 0.15, p < 0.05). CONCLUSIONS: Pending future research corroborating these findings, this measure has potential for use by nurses and other health professionals in follow-up care to identify individuals at risk for low self-efficacy for SSE requiring more targeted educational SSE interventions.

A randomized controlled trial assessing the efficacy of a self-administered psycho-educational intervention for patients with cancer.

OBJECTIVE: Bibliotherapy refers to psychological self-help interventions that utilize treatment books to improve psychological well-being. Research supports bibliotherapy as an efficacious intervention for a variety of mental health problems. Yet, few studies have investigated bibliotherapy in psychosocial oncology. The objective of this randomized controlled trial was to examine the efficacy of the NuCare intervention, delivered as a self-directed workbook, for enhancing empowerment, coping, and quality of life and reducing distress in patients with cancer. METHODS: Eighty-nine adult patients with cancer were randomized to receive the workbook for 6 weeks or the control condition, usual care. Participants completed questionnaires at baseline, 6 weeks post-baseline, and 10 weeks post-baseline. RESULTS: The increase of empowerment (main outcome) and quality of life and the decrease of distress in the NuCare group from pre-intervention to follow-up assessment differed significantly from the respective difference scores in the control group. CONCLUSIONS: The self-administered NuCare workbook is a potentially cost-effective, minimal intervention addressing psychosocial needs of patients with cancer. PRACTICE IMPLICATIONS: Evidence-based bibliotherapy can empower patients and has the promise of reducing the burden on the healthcare system while enhancing the immediacy of psychosocial support.

The Berlin Social Support Scales: Validation of the Received Support Scale in a Canadian sample of patients affected by melanoma.

The purpose of this study was to examine the reliability and validity of the Received Support Scale of the Berlin Social Support Scales in a Canadian sample of English and French language melanoma patients (N = 137). Participants received a skin self-examination education and completed self-report questionnaires. Exploratory factor analyses, reliability analyses, and independent samples t-tests were conducted. Findings support the unidimensionality of the Received Support Scale of the Berlin Social Support Scales. The psychometric similarities of the French and English versions of the scale, its strong internal consistency, as well as its convergent and discriminant validity support the use of the Received Support Scale of the Berlin Social Support Scales in patients with melanoma.

Training and support needs of scleroderma support group facilitators: the North American Scleroderma Support Group Facilitators Survey.

Purpose: Peer-facilitated support groups are an important resource for people with scleroderma, but little is known about challenges faced by support group facilitators. The objective was to identify training and support needs of scleroderma support group facilitators to inform the development of an educational training program. Methods: A 32-item survey assessed confidence of support group facilitators to execute tasks necessary for successfully facilitating support groups. Survey items were grouped into seven themes using content analysis. Results: Eighty North American scleroderma support group facilitators completed the survey. Facilitators were generally confident in their ability to complete tasks related to: (1) Organizing, Structuring, and Facilitating the group; (2) Addressing Individual Member Needs and Diversity of the Group; (3) Helping Members Cope with Grief and Loss; and (4) Attaining and Responding to Member Feedback. They were less confident in their ability to perform tasks related to (1) Managing Difficult Group Dynamics; (2) Promoting and Sustaining the Group; and (3) Balancing Personal and Group Needs. Conclusion: Results suggest that a training program for scleroderma support group facilitators should address a broad range of topics, including managing difficult group interactions, promotion and maintaining the group, and balancing personal and support group needs. Implications for Rehabilitation Many patients with the rare autoimmune connective tissue disease scleroderma depend on peer-facilitated support groups for disease-related education and peer support, but the lack of training for facilitators is a barrier to forming and sustaining groups. Rehabilitation professionals can support the formation and management of local support groups by providing education and support to peer group facilitators or by referring them to national scleroderma organizations who are developing training resources. Training for support group facilitators should focus on areas where facilitators were least confident in their abilities, including managing difficult group dynamics, promoting and sustaining the group, and balancing personal and group needs.

Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program.

Purpose: The purpose of this study was to explore challenges faced by patients with systemic sclerosis, also called scleroderma, in coping with their disease and the strategies they used to face those challenges. Method: Five focus groups were held with scleroderma patients (4 groups, n = 34) and health care professionals who have experience treating scleroderma (1 group, n = 8). Participants' discussions were recorded, transcribed and analyzed using thematic analysis. Results: Participants reported challenges accessing information (e.g., knowledgeable specialists), dealing with negative emotions (e.g., stress due to misunderstandings with loved ones), and accessing resources (e.g., helpful products or devices). Strategies for overcoming challenges were also discussed (e.g., advocating for own needs). Conclusion: When faced with significant challenges while coping with scleroderma, patients develop strategies to manage better and improve their quality of life. To help them cope, patients would benefit from easier access to supportive interventions, including tailored scleroderma self-management programs. Although the challenges experienced by patients with scleroderma are unique, findings from this study might help better understand patients' perspectives regarding coping and disease management for other chronic diseases as well. Implications for Rehabilitation People living with rare diseases, including the rare autoimmune disease scleroderma, face unique challenges and often do not have access to disease-specific educational or other support resources. People with scleroderma report that they face challenges in accessing information, including knowledgeable healthcare providers; managing difficult social interactions and negative emotions; and accessing resources. Strategies employed by scleroderma patients to overcome these challenges include seeking connections to other people with scleroderma or scleroderma patient organizations, actively seeking out local resources, and learning to communicate and advocate more effectively. Rehabilitation professionals can support people with scleroderma by providing them with information on connecting with scleroderma patient organizations or by facilitating local patient support networks.