Fear of depression recurrence among individuals with remitted depression: a qualitative interview study.

BACKGROUND: Major Depressive Disorder (MDD) is a prevalent psychiatric condition and the largest contributor to disability worldwide. MDD is highly recurrent, yet little is known about the mechanisms that occur following a Major Depressive Episode (MDE) and underlie recurrence. We explored the concept of fear of depression recurrence (FoDR) and its impact on daily functioning among individuals in remission from MDD. METHODS: 30 participants (83% female; 37% White; Mage = 27.7, SD = 8.96) underwent semi-structured qualitative interviews. The interviews explored participants' experiences of FoDR including the frequency, severity, content, triggers, and impact of fears and associated coping strategies. We used content analysis to analyze the transcriptions. RESULTS: Most participants (73%) reported having FoDR, with varying frequency, severity, and duration of fears. The triggers and content of participants' fears often mirrored the symptoms (e.g., low mood, anhedonia) and consequences (e.g., job loss, social withdrawal) endured during past MDEs. Some participants reported a minimal impact of FoDR on daily functioning, whereas others reported a positive (e.g., personal growth) or negative (e.g., increased anxiety) influence. LIMITATIONS: Our sample size did not allow for explorations of differences in FoDR across unique MDD subtypes or sociocultural factors. CONCLUSIONS: The concept of FoDR may present a window into understanding the unique cognitive and behavioural changes that occur following MDD remission and underlie depression recurrence. Future research should aim to identify underlying individual differences and characteristics of the disorder that may influence the presence and impact of FoDR. Finally, a FoDR measure should be developed so that associations between FoDR and recurrence risk, depressive symptoms, and other indices of functioning can be determined.

Does Educational Handover Influence Subsequent Assessment?

PURPOSE: Educational handover (i.e., providing information about learners' past performance) is controversial. Proponents argue handover could help tailor learning opportunities. Opponents fear it could bias subsequent assessments and lead to self-fulfilling prophecies. This study examined whether raters provided with reports describing learners' minor weaknesses would generate different assessment scores or narrative comments than those who did not receive such reports. METHOD: In this 2018 mixed-methods, randomized, controlled, experimental study, clinical supervisors from 5 postgraduate (residency) programs were randomized into 3 groups receiving no educational handover (control), educational handover describing weaknesses in medical expertise, and educational handover describing weaknesses in communication. All participants watched the same videos of 2 simulated resident-patient encounters and assessed performance using a shortened mini-clinical evaluation exercise form. The authors compared mean scores, percentages of negative comments, comments focusing on medical expertise, and comments focusing on communication across experimental groups using analyses of variance. They examined potential moderating effects of supervisor experience, gender, and mindsets (fixed vs growth). RESULTS: Seventy-two supervisors participated. There was no effect of handover report on assessment scores (F(2, 69) = 0.31, P = .74) or percentage of negative comments (F(2, 60) = 0.33, P = .72). Participants who received a report indicating weaknesses in communication generated a higher percentage of comments on communication than the control group (63% vs 50%, P = .03). Participants who received a report indicating weaknesses in medical expertise generated a similar percentage of comments on expertise compared to the controls (46% vs 47%, P = .98). CONCLUSIONS: This study provides initial empirical data about the effects of educational handover and suggests it can-in some circumstances-lead to more targeted feedback without influencing scores. Further studies are required to examine the influence of reports for a variety of performance levels, areas of weakness, and learners.

Learner handover: Perspectives and recommendations from the front-line.

INTRODUCTION: Current medical education models increasingly rely on longitudinal assessments to document learner progress over time. This longitudinal focus has re-kindled discussion regarding learner handover-where assessments are shared across supervisors, rotations, and educational phases, to support learner growth and ease transitions. The authors explored the opinions of, experiences with, and recommendations for successful implementation of learner handover among clinical supervisors. METHODS: Clinical supervisors from five postgraduate medical education programs at one institution completed an online questionnaire exploring their views regarding learner handover, specifically: potential benefits, risks, and suggestions for implementation. Survey items included open-ended and numerical responses. The authors used an inductive content analysis approach to analyze the open-ended questionnaire responses, and descriptive and correlational analyses for numerical data. RESULTS: Seventy-two participants completed the questionnaire. Their perspectives varied widely. Suggested benefits of learner handover included tailored learning, improved assessments, and enhanced patient safety. The main reported risk was the potential for learner handover to bias supervisors' perceptions of learners, thereby affecting the validity of future assessments and influencing the learner's educational opportunities and well-being. Participants' suggestions for implementation focused on who should be involved, when and for whom it should occur, and the content that should be shared. DISCUSSION: The diverse opinions of, and recommendations for, learner handover highlight the necessity for handover to maximize learning potential while minimizing potential harms. Supervisors' suggestions for handover implementation reveal tensions between assessment-of and for-learning.

Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey.

PURPOSE: The objectives were to identify reasons why patients attend scleroderma support groups and to ascertain preferences for how meetings are best organized. METHODS: The survey included 30-items on reasons for attending and nine items on organizational preferences. Patients were recruited through European patient organizations. Exploratory factor analysis was used to group reasons for attendance thematically. RESULTS: About 213 scleroderma patients (192 women) completed the survey. A three-factor model best described reasons for attending [χ2(348) = 586.1, p < 0.001; Comparative Fit Index = 0.98; Tucker Lewis Index = 0.97; Root Mean Square Error of Approximation = 0.06] with themes that included: (1) obtaining interpersonal and social support, (2) learning about treatment and symptom management strategies, and (3) discussing other aspects of scleroderma. Among organizational preferences, respondents emphasized that meetings should include educational aspects and the opportunity to share information and support. CONCLUSION: People with scleroderma attend support groups to give and obtain social support and for education about managing their disease and other aspects of living with scleroderma. Support groups should be structured to facilitate both educational and informational aspects and to provide opportunities for sharing and support between members. Implications for rehabilitation Local peer-led support groups are an important support and informational resource for patients living with scleroderma. People with scleroderma attend support groups in order to: (1) obtain interpersonal and social support, (2) learn about disease treatment and symptom management strategies, and (3) discuss other aspects of living with scleroderma outside of symptom management. Most support group members prefer groups with a trained facilitator, that include family members or loved ones in the groups, that include between 11and 20 members, that last between 1 and 2 h, and that meet once every 1-3 months. Rehabilitation professionals can support the formation and management of local support groups or can refer patients to national scleroderma patient organizations for information on support groups that they may be able to access.

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.

Factors associated with negative observer responses towards individuals with visible differences: A scoping review.

People with visible differences are often confronted with negative observer responses, including stares, disgust, and avoidance. Characteristics of negative observer responses are well-documented, but less is known about associated factors. We conducted a scoping review to map what is known about factors associated with negative observer responses. Web of Science, PubMed, PsycINFO, and CINAHL databases were searched, and 16 articles met inclusion criteria. Two general categories of factors were identified: (1) observer characteristics, including age, sex, and socioeconomic status, experiences with disfigurements, and personal beliefs or attitudes related to visible differences; and (2) evolved internal mechanisms, including threat-detection, disgust, and disease avoidance. Additionally, there was evidence that lack of anonymity influences lower reporting of observer reactions. Efforts that increase exposure to individuals with visible differences may ameliorate adverse reactions; however, due to the limited nature of evidence reviewed, further research is needed before more concrete recommendations can be made.

Use of the nominal group technique to identify stakeholder priorities and inform survey development: an example with informal caregivers of people with scleroderma.

OBJECTIVES: The nominal group technique (NGT) allows stakeholders to directly generate items for needs assessment surveys. The objective was to demonstrate the use of NGT discussions to develop survey items on (1) challenges experienced by informal caregivers of people living with systemic sclerosis (SSc) and (2) preferences for support services. DESIGN: Three NGT groups were conducted. In each group, participants generated lists of challenges and preferred formats for support services. Participants shared items, and a master list was compiled, then reviewed by participants to remove or merge overlapping items. Once a final list of items was generated, participants independently rated challenges on a scale from 1 (not at all important) to 10 (extremely important) and support services on a scale from 1 (not at all likely to use) to 10 (very likely to use). Lists generated in the NGT discussions were subsequently reviewed and integrated into a single list by research team members. SETTING: SSc patient conferences held in the USA and Canada. PARTICIPANTS: Informal caregivers who previously or currently were providing care for a family member or friend with SSc. RESULTS: A total of six men and seven women participated in the NGT discussions. Mean age was 59.8 years (SD=12.6). Participants provided care for a partner (n=8), parent (n=1), child (n=2) or friend (n=2). A list of 61 unique challenges was generated with challenges related to gaps in information, resources and support needs identified most frequently. A list of 18 unique support services was generated; most involved online or in-person delivery of emotional support and educational material about SSc. CONCLUSIONS: The NGT was an efficient method for obtaining survey items directly from SSc caregivers on important challenges and preferences for support services.

Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross-Sectional Study.

OBJECTIVE: Peer-led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups. METHODS: A 21-item survey was used to assess reasons for nonattendance among SSc patients in Canada and the US. Exploratory factor analysis (EFA) was conducted, using the software MPlus 7, to group reasons for nonattendance into themes. RESULTS: A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ2 [150] = 302.7; P < 0.001; Comparative Fit Index = 0.91, Tucker-Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02-0.43). The 3 identified themes, reflecting reasons for not attending SSc support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and beliefs about support groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as important or very important reasons for nonattendance. The 2 items most commonly rated as important or very important were 1) already having enough support from family, friends, or others, and 2) not knowing of any SSc support groups offered in my area. CONCLUSION: SSc organizations may be able to address limitations in accessibility and concerns about SSc support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators.

Understanding coping strategies among people living with scleroderma: a focus group study.

PURPOSE: Systemic sclerosis or scleroderma is a chronic, rare connective tissue disease with negative physical and psychological implications. Coping strategies used by scleroderma patients have not been studied in-depth. The objective of the present study was to gain a greater understanding of the coping strategies employed by people living with scleroderma. METHOD: Three semi-structured focus group discussions were conducted with a total of 22 people with scleroderma. Interviews were recorded, transcribed, and analyzed using content analysis. Coping strategies discussed were analyzed through Lazarus and Folkman's theoretical model of coping, including: (1) problem-focused, (2) emotion-focused, and (3) meaning-focused coping. RESULTS: Participants reported using a combination of problem-focused (e.g., professional help; seeking disease-related information), emotion-focused (e.g., social support; adaptive distraction techniques), and meaning-focused coping strategies (e.g., benefit finding; goal reappraisal) to help them to cope with and manage their disease. However, many patients reported having difficulty in accessing support services. CONCLUSIONS: Scleroderma patients use similar coping strategies as patients with more common diseases, but they may not have access to the same level of support services. Accessible interventions, including self-management programs, aimed at improving problem- and emotion-focused coping are needed. Further, increased access to support groups may provide patients with opportunities to obtain social support and enhance coping.

Development and preliminary validation of the Scleroderma Support Group Leader Self-efficacy Scale.

Support groups are an important resource for people living with systemic sclerosis (SSc; scleroderma). Peer support group leaders play an important role in the success and sustainability of SSc support groups, but face challenges that include a lack of formal training. An SSc support group leader training program could improve leader self-efficacy to carry out important leadership tasks, including the management of group dynamics. However, no measures exist to assess self-efficacy among SSc support group leaders. The objective of this study was to develop and provide preliminary evidence on the reliability and validity of the Scleroderma Support Group Leader Self-efficacy Scale (SSGLSS). The SSGLSS was administered to two sets of SSc support group leaders from North America, Europe, and Australia. Study 1 participants (n = 102) completed the SSGLSS only. Study 2 participants (n = 55) completed the SSGLSS and the Oldenburg Burnout Inventory (OLBI). For both studies, we evaluated internal consistency reliability using Cronbach's coefficient alpha. Convergent validity was assessed in Study 2 using Pearson correlations of the SSGLSS with the OLBI exhaustion and disengagement subscales. Cronbach's alpha was 0.96 in Study 1 and 0.95 in Study 2. Consistent with our hypotheses, there was a small negative correlation between SSGLSS scores and the OLBI exhaustion subscale (r = -0.25, p<0.01) and a moderate negative correlation between SSGLSS scores and the disengagement subscale (r = -0.38, p<0.01). These results suggest that the SSGLSS is a reliable and valid measure of self-efficacy for carrying out support group leadership tasks.

Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review.

BACKGROUND: Support groups are an important resource for many people living with rare diseases. The perceived benefits of participating in support groups for people with rare diseases and factors that may influence the ability to successfully establish and maintain these groups are not well understood. Thus, the objective of this scoping review was to provide a mapping of the available evidence on the (1) benefits or perceived benefits of participating in rare disease support groups and (2) barriers and facilitators of establishing and maintaining these groups. METHODS: CINAHL and PubMed were searched from January 2000 to August 2015, with no language restrictions. Publications that described the benefits or perceived benefits of participating in rare disease support groups or the barriers and facilitators of establishing and maintaining them were eligible for inclusion. Two investigators independently evaluated titles/abstracts and full-text publications for eligibility, and extracted data from each included publication. RESULTS: Ten publications were included in the scoping review. There was no trial evidence on support group benefits. All ten publications reported on the perceived benefits of participating in rare disease support groups. Three reported on barriers and facilitators of establishing and maintaining them. Overall, seven different perceived benefits of participating in rare disease support groups were identified: (1) meeting and befriending other people with the same rare disease and similar experiences; (2) learning about the disease and related treatments; (3) giving and receiving emotional support; (4) having a place to speak openly about the disease and one's feelings; (5) learning coping skills; (6) feeling empowered and hopeful; and (7) advocating to improve healthcare for other rare disease patients. Several facilitators (e.g., meeting via teleconference) and barriers (e.g., getting patients and/or family members to lead the group) of establishing and maintaining these groups were identified. CONCLUSIONS: Rare disease support groups are an important source of emotional and practical support for many patients. There is no trial evidence on the benefits of these groups and limited evidence on the perceived benefits and barriers and facilitators to establishing and maintaining them.

Effect of support group peer facilitator training programmes on peer facilitator and support group member outcomes: a systematic review.

OBJECTIVE: Peer facilitators play an important role in determining the success of many support groups for patients with medical illnesses. However, many facilitators do not receive training for their role and report a number of challenges in fulfilling their responsibilities. The objective of this systematic review was to evaluate the effects of training and support programmes for peer facilitators of support groups for people with medical illnesses on (1) the competency and self-efficacy of group facilitators and (2) self-efficacy for disease management, health outcomes and satisfaction with support groups among group members. METHODS: Searches included the CENTRAL, CINAHL, EMBASE, MEDLINE, PsycINFO and Web of Science databases from inception through 8 April 2016; reference list reviews; citation tracking of included articles; and trial registry reviews. Eligible studies were randomised controlled trials (RCTs) in any language that evaluated the effects of training programmes for peer facilitators compared with no training or alternative training formats on (1) competency or self-efficacy of peer facilitators, and (2) self-efficacy for disease management, health outcomes and satisfaction with groups of group members. The Cochrane Risk of Bias tool was used to assess risk of bias. RESULTS: There were 9757 unique titles/abstracts and 2 full-text publications reviewed. 1 RCT met inclusion criteria. The study evaluated the confidence and self-efficacy of cancer support group facilitators randomised to 4 months access to a website and discussion forum (N=23; low resource) versus website, discussion forum and 2-day training workshop (N=29). There were no significant differences in facilitator confidence (Hedges' g=0.16, 95% CI -0.39 to 0.71) or self-efficacy (Hedges' g=0.31, 95% CI -0.24 to 0.86). Risk of bias was unclear or high for 4 of 6 domains. CONCLUSIONS: Well-designed and well-conducted, adequately powered trials of peer support group facilitator training programmes for patients with medical illnesses are needed. TRIAL REGISTRATION NUMBER: CRD42014013601.

Reasons for non-participation in scleroderma support groups.

OBJECTIVES: Peer-led support groups are an important resource for people living with many rare diseases, including scleroderma (systemic sclerosis, SSc). Little is known, however, about the accessibility of SSc support groups and factors that may discourage people from participating in these groups. The objective of this study was to identify reasons why people with SSc do not participate in SSc support groups. METHODS: Canadians with SSc were recruited to complete the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities. Data from respondents who answered the question "Have you participated in SSc support groups?" with "No" were analyzed. Frequencies of participants who responded (1) I'm not interested, (2) None are easily available, and (3) Other (please specify) were tallied. A content analysis approach was used to code the open-ended responses to this question. RESULTS: A total of 280 respondents provided a reason for non-participation in SSc support groups. Key reasons for not participating in support groups included: (1) Not interested or no perceived need (36%); (2) No local support group available (35%); (3) Lack of awareness of the existence of SSc support groups (13%); (4) Practical barriers (6%); (5) Emotional factors (4%); (6) Uncertainty about whether to attend (4%); and (7) Negative perceptions about support groups (3%). CONCLUSIONS: SSc organizations may be able to address current limitations in the accessibility and effectiveness of SSc support groups by implementing online support groups, as well as by providing support group leaders training to help establish and sustain successful SSc support groups.

Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study.

BACKGROUND: Systemic sclerosis, or scleroderma, is a chronic and rare connective tissue disease with negative physical and psychological implications. Sources of emotional distress and the impact they have on the lives of people with scleroderma are not well understood. OBJECTIVES: To gain an in-depth understanding of the emotional experiences and sources of emotional distress for women and men living with scleroderma through focus group discussions. METHODS: Three semi-structured focus group discussions were conducted (two in English, one in French) with a total of 22 people with scleroderma recruited through the Scleroderma Society of Ontario in Hamilton, Ontario and a scleroderma clinic in Montreal, Canada. Interviews were recorded, transcribed, and then coded for emerging themes using thematic inductive analysis. RESULTS: Core themes representing sources of emotional distress were identified, including: (a) facing a new reality; (b) the daily struggle of living with scleroderma; (c) handling work, employment and general financial burden; (d) changing family roles; (e) social interactions; and (f) navigating the health care system. Collectively, these themes refer to the stressful journey of living with scleroderma including the obstacles faced and the emotional experiences beginning prior to receiving a diagnosis and continuing throughout the participants' lives. CONCLUSION: Scleroderma was portrayed as being an unpredictable and overwhelming disease, resulting in many individuals experiencing multiple sources of emotional distress. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease.