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1.
Disabil Rehabil ; 46(3): 533-545, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36708187

RESUMO

PURPOSE: Explore trial participants' and research team members' perceptions of the impact of the videoconference-based, supportive care program (SPIN-CHAT Program) during early COVID-19 for individuals with systemic sclerosis (SSc). METHODS: Data were collected cross-sectionally. A social constructivist paradigm was adopted, and one-on-one videoconference-based, semi-structured interviews were conducted with SPIN-CHAT Trial participants and research team members. A hybrid inductive-deductive approach and reflexive thematic analysis were used. RESULTS: Of the 40 SPIN-CHAT Trial participants and 28 research team members approached, 30 trial participants (Mean age = 54.9; SD = 13.0 years) and 22 research team members agreed to participate. Those who took part in interviews had similar characteristics to those who declined. Five themes were identified: (1) The SPIN-CHAT Program conferred a range of positive psychological health outcomes, (2) People who don't have SSc don't get it: The importance of SSc-specific programming, (3) The group-based format of the SPIN-CHAT Program created a safe space to connect and meet similar others, (4) The structure and schedule of the SPIN-CHAT Program reduced feelings of boredom and contributed to enhanced psychological health, (5) The necessity of knowledge, skills, and tools to self-manage SSc and navigate COVID-19. CONCLUSION: Participants' and research team members' perspectives elucidated SPIN-CHAT Program benefits and how these benefits may have been realized. Results underscore the importance of social support from similar others, structure, and self-management to enhance psychological health during COVID-19. TRIAL REGISTRATION: clinicaltrials.gov (NCT04335279)IMPLICATIONS FOR REHABILITATIONThe videoconference-based, supportive care SPIN-CHAT Program enhanced psychological health amongst individuals affected by systemic sclerosis.SPIN-CHAT Program participants and research team members shared that being around similar others, program structure, and self-management support were important and may have contributed to enhanced psychological health.Further efforts are required to explore experiences within supportive care programs to better understand if and how psychological health is impacted.


Assuntos
COVID-19 , Escleroderma Sistêmico , Humanos , Pessoa de Meia-Idade , COVID-19/epidemiologia , Saúde Mental , Pesquisa Qualitativa , Escleroderma Sistêmico/terapia , Apoio Social , Adulto , Idoso , Ensaios Clínicos como Assunto
2.
Transl Behav Med ; 13(7): 442-452, 2023 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-36999812

RESUMO

The SPIN-CHAT Program was designed to support mental health among individuals with systemic sclerosis (SSc; commonly known as scleroderma) and at least mild anxiety symptoms at the onset of COVID-19. The program was formally evaluated in the SPIN-CHAT Trial. Little is known about program and trial acceptability, and factors impacting implementation from the perspectives of research team members and trial participants. Thus, the propose of this follow-up study was to explore research team members' and trial participants' experiences with the program and trial to identify factors impacting acceptability and successful implementation. Data were collected cross-sectionally through one-on-one, videoconference-based, semi-structured interviews with 22 research team members and 30 purposefully recruited trial participants (Mage = 54.9, SD = 13.0 years). A social constructivist paradigm was adopted, and data were analyzed thematically. Data were organized into seven themes: (i) getting started: the importance of prolonged engagement and exceeding expectations; (ii) designing the program and trial: including multiple features; (iii) training: research team members are critical to positive program and trial experiences; (iv) offering the program and trial: it needs to be flexible and patient-oriented; (v) maximizing engagement: navigating and managing group dynamics; (vi) delivering a videoconference-based supportive care intervention: necessary, appreciated, and associated with some barriers; and (vii) refining the program and trial: considering modification when offered beyond the period of COVID-19 restrictions. Trial participants were satisfied with and found the SPIN-CHAT Program and Trial to be acceptable. Results offer implementation data that can guide the design, development, and refinement of other supportive care programs seeking to promote psychological health during and beyond COVID-19.


The Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program, a videoconference-based supportive care program, was designed to protect and enhance mental health in individuals affected by systemic sclerosis (commonly known as scleroderma) with at least mild anxiety symptoms during the COVID-19 pandemic. A trial was conducted to evaluate the SPIN-CHAT Program, and results were generally positive. However, important gaps in knowledge remained. Specifically, research team members' and participants' perceptions of SPIN-CHAT Trial acceptability (including satisfaction) and factors impacting implementation of the SPIN-CHAT Program had not yet been explored. To fill this gap, we conducted one-on-one, videoconference-based, semi-structured interviewed with 22 research team members and 30 purposefully recruited trial participants. Interviews sought to gain insights into research team members' and trial participants' experiences within the SPIN-CHAT Program, delivery preferences, and aspects that were/were not beneficial. Findings suggest research team members and participants valued the SPIN-CHAT Program and found the trial to be acceptable. Results also highlight important factors to consider when designing, developing, and/or refining videoconference-based supportive care programs.


Assuntos
COVID-19 , Escleroderma Sistêmico , Humanos , Seguimentos , Pesquisa Qualitativa , Escleroderma Sistêmico/terapia , Comunicação por Videoconferência
3.
Int J Clin Exp Hypn ; 71(1): 25-47, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36622308

RESUMO

This systematic review aims to identify current protocols involving the use of hypnosis during the perinatal period and to examine its effects on mothers' well-being. Seven electronic databases were searched for articles published from 1960 to April 1, 2021, that assessed the effectiveness of hypnosis during the perinatal period. All published randomized, controlled trials and nonrandomized, controlled trials studies assessing the effectiveness of hypnosis used during the perinatal period with healthy adult women were included. The quality of the included studies was assessed using the Risk of Bias in Nonrandomized Studies of Interventions or the Revised Cochrane risk-of-bias tool for randomized trials. Article screening, methodological-quality assessment, and data extraction were performed by 2 independent reviewers. Twenty-one articles, corresponding to 16 studies met inclusion criteria. Apart from 2 studies, all included studies reported the benefits of implementing a hypnosis intervention during the perinatal period. However, methodological limitations relative to intervention implementation and assessment methods might have led to the observed variability in results across studies. Future studies should consider a more standardized methodology.


Assuntos
Hipnose , Gravidez , Adulto , Feminino , Humanos , Hipnose/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto
4.
Psychol Trauma ; 15(5): 767-771, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34591530

RESUMO

OBJECTIVE: The PTSD Checklist for DSM (PCL) is the most widely used screener to assess posttraumatic stress disorder (PTSD) in those with psychotic disorders (psychosis), though previous research has questioned its validity in psychosis. Considerable symptom overlap between the 2 disorders (e.g., concentration difficulties, avoidance, etc.) along with the general underdiagnosing of PTSD in psychosis speaks to the need for consensus regarding brief screeners. This hypothesis-generating study is the first to explore the PCL-5 (its most recent iteration) factor structure in psychosis to assess if a more valid underlying structure may exist. METHOD: Sixty-5 individuals who met the DSM-5 PTSD criterion A traumatic event following an interview subsequently completed the PCL-5. Exploratory factor analysis was conducted to explore the latent structure of the PCL-5 in psychotic disorders. RESULTS: A 4-factor solution differing from the DSM-5 4-factor model emerged as the best fitting model. Resulting PCL-5 dimensions in psychosis were identified as (1) Reexperiencing/Negative Affect; (2) Depressive; (3) Externalizing Anxious Behaviors; and (4) Avoidance/Physiological Reactivity. CONCLUSIONS: Results guide the hypothesis that the latent structure of the PCL-5 may be unique in psychosis, which will have important clinical implications. Research is now needed to confirm the proposed model in larger samples of individuals with psychosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Assuntos
Transtornos Psicóticos , Transtornos de Estresse Pós-Traumáticos , Humanos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Lista de Checagem/métodos , Ansiedade , Manual Diagnóstico e Estatístico de Transtornos Mentais
5.
Orphanet J Rare Dis ; 17(1): 396, 2022 10 28.
Artigo em Inglês | MEDLINE | ID: mdl-36307891

RESUMO

BACKGROUND: More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders. METHODS: The trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5-6 participants weekly for 13 weeks in 60-90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention. RESULTS: One hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8-32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0-22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2-21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment. CONCLUSIONS: Peer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases. TRIAL REGISTRATION: NCT03965780 ; registered on May 29, 2019.


Assuntos
Esclerodermia Localizada , Autoeficácia , Humanos , Doenças Raras , Grupos de Autoajuda , Grupo Associado , Pessoal de Saúde , Qualidade de Vida
7.
Lancet Rheumatol ; 3(6): e427-e437, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33899008

RESUMO

BACKGROUND: No trials have tested multifaceted mental health interventions recommended by public health organisations during COVID-19. The objective of this trial was to evaluate the effect of the Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program on anxiety symptoms and other mental health outcomes among people vulnerable during COVID-19 owing to a pre-existing medical condition. METHODS: The SPIN-CHAT Trial was a pragmatic, two-arm, parallel, partially nested, randomised, controlled trial (1:1 allocation to intervention or waitlist). Eligible participants with systemic sclerosis were recruited from the international SPIN COVID-19 Cohort. SPIN COVID-19 Cohort participants were eligible for the trial if they completed baseline measures and had at least mild anxiety symptoms, had not tested positive for COVID-19, and were not currently receiving mental health counselling. SPIN-CHAT is a 4-week (3 sessions per week) videoconference-based group intervention that provided education and practice with mental health coping strategies, and provided social support to reduce isolation. Groups included 6-10 participants. The primary outcome analysed in the intention-to-treat population was anxiety symptoms (PROMIS Anxiety 4a version 1.0) immediately post-intervention. This trial is registered with ClinicalTrials.gov, NCT04335279 and is complete. FINDINGS: Of participants who completed baseline measures between April 9, 2020, and April 27, 2020, 560 participants were eligible and 172 participants were randomly assigned to intervention (n=86) or waitlist (n=86). Mean age was 55·0 years (SD 11·4 years), 162 (94%) were women, and 136 (79%) identified as White. In intention-to-treat analyses, the intervention did not significantly reduce anxiety symptoms post-intervention (-1·57 points, 95% CI -3·59 to 0·45; standardised mean difference [SMD] -0·22 points) but reduced symptoms 6 weeks later (-2·36 points, 95% CI -4·56 to -0·16; SMD -0·31). Depression symptoms were significantly lower 6 weeks post-intervention (-1·64 points, 95% CI -2·91 to -0·37; SMD -0·31); no other secondary outcomes were significant. No adverse events were reported. INTERPRETATION: The intervention did not significantly improve anxiety symptoms or other mental health outcomes post-intervention. However, anxiety and depression symptoms were significantly lower 6 weeks later, potentially capturing the time it took for new skills and social support between intervention participants to affect mental health. Multi-faceted interventions such as SPIN-CHAT have potential to address mental health needs in vulnerable groups during COVID-19, yet uncertainty remains about effectiveness. FUNDING: Canadian Institutes of Health Research (CIHR; VR4-172745, MS1-173066); McGill Interdisciplinary Initiative in Infection and Immunity Emergency COVID-19 Research Fund; Scleroderma Canada, made possible by an educational grant for patient support programming from Boehringer Ingelheim; the Scleroderma Society of Ontario; Scleroderma Manitoba; Scleroderma Atlantic; Scleroderma Australia; Scleroderma New South Wales; Scleroderma Victoria; Scleroderma Queensland; Scleroderma SASK; the Scleroderma Association of BC; and Sclérodermie Québec.

8.
Psychol Trauma ; 13(6): 673-683, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33539158

RESUMO

Objective: Posttraumatic stress disorder (PTSD) has been shown to significantly impair quality of life (QOL), although no meta-analysis has evaluated the effect of psychotherapies for PTSD on QOL in the civilian population. The current meta-analysis aimed to assess these effects in the adult civilian population. Method: An exhaustive search of 13 databases revealed 9 studies of moderate to strong methodological quality evaluating mainly cognitive-behavioral therapy (8 of 9 studies). A total of 421 participants were allocated to a psychotherapy condition, 174 to a waitlist control group, and 203 were allocated to an active control group. Waitlist and active-controlled random effects of psychotherapies on QOL were computed. Risk of bias was assessed using multiple indices. Results: Pre-post treatment pooled effect sizes were small to moderate for QOL (active-controlled: Hedges' g = 0.37, 95% confidence interval [CI;0.14, 0.59]; waitlist-controlled: g = 0.63, CI [0.44, 0.83]) and were both large (waitlist-controlled: g = -1.36, CI [-1.85, -0.88]) and small (active-controlled: g = -0.40, CI [-0.57, -0.23]) for PTSD. Risk of bias analyses support robust and conservative results. Conclusions: The results, mainly with respect to cognitive-behavioral therapy, suggest that psychotherapies for PTSD improve QOL. More research is required to determine whether improvements are adequate in restoring QOL to a clinically acceptable level. Future studies should evaluate the effects of psychotherapies on the different dimensions of QOL as well as the specific effects of additional QOL-focused interventions. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Assuntos
Terapia Cognitivo-Comportamental , Transtornos de Estresse Pós-Traumáticos , Adulto , Terapia Cognitivo-Comportamental/métodos , Humanos , Psicoterapia/métodos , Qualidade de Vida , Transtornos de Estresse Pós-Traumáticos/terapia
10.
Disabil Rehabil ; 43(9): 1279-1286, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-31522575

RESUMO

PURPOSE: Many people with scleroderma rely on peer-led support groups as a coping resource. Reasons for not attending support groups in scleroderma have been investigated only in North American participants. This study assesses reasons for nonattendance in European countries and compares results with previously published North American findings. MATERIALS AND METHODS: The same 21-item survey as used in the North American sample assessed possible reasons for not attending scleroderma support groups. Proportions of items rated Important or Very Important were compared between samples. RESULTS: Consistent with the North American survey findings (N = 242), the two items most commonly rated as (Very) Important reasons for nonattendance among 228 European participants were (1) already having enough support (57%), and (2) not knowing of any local scleroderma support groups (58%). Compared to North American non-attenders, European patients were significantly more likely to rate not knowing enough about what happens at support groups (46% vs 19%), not having reliable ways to get to meetings (35% vs 17%), and being uncomfortable sharing experiences with a group (22% vs 11%) as (Very) Important reasons for nonattendance. CONCLUSIONS: Improving access to European support groups, providing education about support groups and group leader training may encourage participation.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals might help develop local support groups for people with systemic sclerosis (scleroderma) to address the lack of access to these groups for many patients.The need for transportation and limited local accessibility may also be addressed by implementing online systemic sclerosis support groups.Professionals in the field of rehabilitation may work with people with systemic sclerosis and patient organizations to provide education about support groups to improve support group attendance in Europe.


Assuntos
Escleroderma Sistêmico , Grupos de Autoajuda , Europa (Continente) , Humanos , Grupo Associado , Inquéritos e Questionários , Estados Unidos
11.
J Psychosom Res ; 135: 110132, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32521358

RESUMO

OBJECTIVE: Contagious disease outbreaks and related restrictions can lead to negative psychological outcomes, particularly in vulnerable populations at risk due to pre-existing medical conditions. No randomised controlled trials (RCTs) have tested interventions to reduce mental health consequences of contagious disease outbreaks. The primary objective of the Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Trial is to evaluate the effect of a videoconference-based program on symptoms of anxiety. Secondary objectives include evaluating effects on symptoms of depression, stress, loneliness, boredom, physical activity, and social interaction. METHODS: The SPIN-CHAT Trial is a pragmatic RCT that will be conducted using the SPIN-COVID-19 Cohort, a sub-cohort of the SPIN Cohort. Eligible participants will be SPIN-COVID-19 Cohort participants without a positive COVID-19 test, with at least mild anxiety (PROMIS Anxiety 4a v1.0 T-score ≥ 55), not working from home, and not receiving current counselling or psychotherapy. We will randomly assign 162 participants to intervention groups of 7 to 10 participants each or waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups but not in the waitlist control. The SPIN-CHAT Program includes activity engagement, education on strategies to support mental health, and mutual participant support. Intervention participants will receive the 4-week (3 sessions per week) SPIN-CHAT Program via videoconference. The primary outcome is PROMIS Anxiety 4a score immediately post-intervention. ETHICS AND DISSEMINATION: The SPIN-CHAT Trial will test whether a brief videoconference-based intervention will improve mental health outcomes among at-risk individuals during contagious disease outbreak.


Assuntos
Ansiedade/prevenção & controle , Infecções por Coronavirus/psicologia , Promoção da Saúde/métodos , Pneumonia Viral/psicologia , Escleroderma Sistêmico/terapia , COVID-19 , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Humanos , Pandemias/prevenção & controle , Assistência Centrada no Paciente , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Avaliação de Programas e Projetos de Saúde , Projetos de Pesquisa , Medição de Risco , Isolamento Social/psicologia , Comunicação por Videoconferência
12.
Trials ; 20(1): 717, 2019 Dec 12.
Artigo em Inglês | MEDLINE | ID: mdl-31831073

RESUMO

BACKGROUND: Some people with rare diseases rely on peer-led support groups for disease-specific education and emotional and practical support. Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune connective tissue disease. Many people with SSc cannot access support groups, and, when support groups exist, they may not be sustained due to challenges that could be addressed via leader training. The Scleroderma Patient-centered Intervention Network (SPIN), along with SSc patient organization partners, developed a training program for SSc patient support group leaders, the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. We recently completed a feasibility trial in which we successfully delivered the program to two groups of support group leaders who reported a high level of satisfaction with the program and its delivery. The primary objective of the full-scale SPIN-SSLED trial is to evaluate the effect of the program on support group leaders' self-efficacy for carrying out their leadership role. Secondary objectives include evaluating effects on leader burnout, leader satisfaction (participation efficacy), and emotional distress. METHODS/DESIGN: The SPIN-SSLED trial is a pragmatic randomized controlled trial (RCT) in which 180 support group leaders will be randomly allocated to training groups of 6 participants each or to a waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups, but not in the waitlist control. Participants allocated to the training program will receive the 13-module SPIN-SSLED Program, delivered via webinar over the course of 3 months in weekly 60-90-min sessions. The primary outcome is leader self-efficacy, measured by the Scleroderma Support Group Leader Self-efficacy Scale post-intervention. Secondary outcomes are leader self-efficacy at 3 months post-intervention, and leader burnout, volunteer job satisfaction (participation efficacy), and emotional distress post-intervention and at 3 months post-intervention. DISCUSSION: The SPIN-SSLED trial will test whether a training program for SSc patient support group leaders increases the self-efficacy of group leaders to carry out leadership tasks. The program has the potential to significantly improve the effectiveness and sustainability of existing SSc support groups, to increase the number of available support groups, and to be adapted for other chronic diseases. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.


Assuntos
Educação Continuada/organização & administração , Liderança , Escleroderma Sistêmico/psicologia , Autoeficácia , Grupos de Autoajuda/organização & administração , Esgotamento Psicológico , Humanos , Educação de Pacientes como Assunto , Grupo Associado , Satisfação Pessoal , Angústia Psicológica , Ensaios Clínicos Controlados Aleatórios como Assunto
13.
BMJ Open ; 9(11): e029935, 2019 11 11.
Artigo em Inglês | MEDLINE | ID: mdl-31719073

RESUMO

OBJECTIVES: The Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and scientific aspects (eg, performance of outcome measures) and (2) assess user satisfaction and identify any modifications needed to improve programme content or delivery based on participant feedback. DESIGN: Non-randomised feasibility trial. SETTING: North American patient organisations. PARTICIPANTS: Current support group leaders or potential new leaders referred by patient organisations. INTERVENTION: The programme included 13 modules delivered live via videoconference over 3 months (April to July 2018) in 60 to 90 min sessions. OUTCOME MEASURES: (1) Elements of feasibility, including enrolment and consent procedures, percentage of referred group leaders who consented to participate, session attendance and technical support requirements; (2) programme usability, understandability, organisation and clarity; (3) leader satisfaction with the programme and (4) planned trial outcome measures, including support group leader self-efficacy, burnout, emotional distress and physical function. RESULTS: All 12 referred potential participants consented to enrol, and 10 were included in two training groups of five participants each. Participants attended 95% of sessions. Required technical support was minimal, and videoconferencing technology functioned well. Overall programme satisfaction rating was 9.4/10. Mean item rating on the eight items of the Client Satisfaction Questionnaire-8 was 3.83 (1=low satisfaction; 4=high satisfaction). Pre-post scores on the Scleroderma Support Group Leader Self-efficacy Scale increased by 1.7 SDs (large effect); scores on burnout, emotional distress and physical function improved by 0.44, 0.38 and 0.45 SDs (moderate effects). CONCLUSION: The SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects. Participant satisfaction was high. The programme is ready to be tested in a full-scale randomised controlled trial. TRIAL REGISTRATION NUMBER: NCT03508661.


Assuntos
Liderança , Satisfação do Paciente/estatística & dados numéricos , Assistência Centrada no Paciente/métodos , Avaliação de Programas e Projetos de Saúde/métodos , Escleroderma Sistêmico/terapia , Grupos de Autoajuda , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , América do Norte , Autoeficácia , Inquéritos e Questionários , Comunicação por Videoconferência
14.
J Scleroderma Relat Disord ; 4(3): 173-186, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35382506

RESUMO

Peer-facilitated support groups are an important source for receiving disease-related information and support for people with systemic sclerosis (or scleroderma). A recent survey explored reasons for attending systemic sclerosis support groups in Europe and Australia and used exploratory factor analysis to group reasons for attendance into three main themes: (1) interpersonal and social support, (2) disease treatment and symptom management strategies, and (3) other aspects of living with systemic sclerosis. The objective of the present study was to replicate this study in a sample of patients from North America using confirmatory factor analysis. A 30-item survey was used to assess reasons for attendance and organizational preferences among systemic sclerosis patients in Canada and the United States. In total, 171 members completed the survey. In the confirmatory factor analysis, the three-factor model showed good fit to the data (χ2(399) = 646.0, p < 0.001, Tucker-Lewis index = 0.97, comparative fit index = 0.97, root mean square error approximation = 0.06). On average, respondents rated 22 (73%) of 30 items as "important" or "very important" reasons for attending support groups. Among organizational preferences, respondents emphasized the importance of the ability to share feelings and concerns, as well as educational aspects. Findings of our study suggest that reasons for attending support groups are similar for patients from Europe, Australia, and North America and that support groups should facilitate social support as well as disease education. These results inform the development of training programs for current and future systemic sclerosis support group leaders across the globe.

15.
Disabil Rehabil ; 41(8): 974-982, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-29254393

RESUMO

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.


Assuntos
Preferência do Paciente , Escleroderma Sistêmico , Grupos de Autoajuda/organização & administração , Adulto , Europa (Continente)/epidemiologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Avaliação das Necessidades , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Grupo Associado , Escleroderma Sistêmico/epidemiologia , Escleroderma Sistêmico/psicologia , Escleroderma Sistêmico/reabilitação , Percepção Social , Apoio Social , Inquéritos e Questionários
16.
Disabil Rehabil ; 41(20): 2477-2482, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-29696997

RESUMO

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.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Reabilitação , Escleroderma Sistêmico/reabilitação , Grupos de Autoajuda , Canadá , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Reabilitação/educação , Reabilitação/métodos , Reabilitação/psicologia , Grupos de Autoajuda/organização & administração , Grupos de Autoajuda/normas , Apoio Social , Inquéritos e Questionários , Estados Unidos
17.
Biopsychosoc Med ; 12: 11, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30202430

RESUMO

This letter comments on the conclusion drawn by Shirotsuki et al. (2017) in their article entitled "The effect for Japanese workers of a self-help computerized cognitive behaviour therapy program with a supplement soft drink", recently published in BioPsychoSocial Medicine. The authors concluded that their drink, containing L-carnosine, enhances the effects of a computerized cognitive-behavioural therapy (CCBT) on the psychological well-being of healthy Japanese workers. Yet, we argue that their conclusion is unfounded given their results and the methodological shortcomings of their study. Briefly, while the authors reported improvement on the tension-anxiety subscale of the Profile of Mood States (POMS) in the CCBT only group, they also observed a lack of improvement on this subscale in the CCBT+L-carnosine group suggesting that the drink washes out this beneficial effect of CCBT. Methodological issues include the uncontrolled levels of L-carnosine metabolized by participants jeopardize the study's internal validity. Also, the clinical meaningfulness of the findings seems dubious as post-treatment scores remained within the range of the general Japanese population. Consequently, we argue that Shirotsuki et al.'s study should be re-conducted before drawing any valid conclusion.

18.
Eur J Psychol ; 14(1): 254-286, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29899808

RESUMO

Panic disorder with or without agoraphobia (PD/A) and obsessive-compulsive disorder (OCD) are characterized by major behavioral dysruptions that may affect patients' social and marital functioning. The disorders' impact on interpersonal relationships may also affect the quality of support patients receive from their social network. The main goal of this systematic review is to determine the association between social or marital support and symptom severity among adults with PD/A or OCD. A systematic search of databases was executed and provided 35 eligible articles. Results from OCD studies indicated a negative association between marital adjustment and symptom severity, and a positive association between accommodation from relatives and symptom severity. However, results were inconclusive for negative forms of social support (e.g. criticism, hostility). Results from PD/A studies indicated a negative association between perceived social support and symptom severity. Also, results from studies using an observational measure of marital adjustment indicated a negative association between quality of support from the spouse and PD/A severity. However, results were inconclusive for perceived marital adjustment and symptom severity. In conclusion, this systematic review generally suggests a major role of social and marital support in PD/A and OCD symptomatology. However, given diversity of results and methods used in studies, more are needed to clarify the links between support and symptom severity among patients with PD/A and OCD.

19.
Burns ; 44(8): 1870-1881, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29803586

RESUMO

BACKGROUND: Evidence from clinical trials suggests psychological interventions should be considered as an adjunct to medications. OBJECTIVE: The purpose of this systematic review and meta-analysis was to evaluate the effectiveness of clinical hypnosis on pain, anxiety and medication needs during wound care in adults suffering from a burn injury. DATA SOURCES: Medline, PsychINFO, CINAHL, Embase, ISI, SCOPUS, Cochrane, and Proquest databases were searched for randomized controlled trials comparing hypnosis to other interventions during dressing change in adult patients. DATA SYNTHESIS: Two independent reviewers extracted relevant articles and assessed their methodological quality. Only six studies met the inclusion criteria and were described in detail. Available data was pooled with Revman 5.3. RESULTS: For the primary outcome, we found a statistically significant difference in pain intensity ratings favoring hypnosis (MD=-8.90, 95% CI -16.28, -1.52). For the secondary outcomes, there was a statistically significant difference in anxiety ratings favoring hypnosis (MD=-21.78, 95% CI -35.64, -7.93) and no difference in medication usage (MD=-0.07, 95% CI -0.32, 0.17). CONCLUSION: These results suggest that hypnosis reduces pain intensity and anxiety ratings in adults undergoing burn wound care. However, because of the limitations discussed, clinical recommendations are still premature.


Assuntos
Analgésicos/uso terapêutico , Ansiedade/terapia , Queimaduras/terapia , Hipnose Anestésica/métodos , Hipnose/métodos , Dor Processual/terapia , Queimaduras/psicologia , Humanos
20.
Arthritis Care Res (Hoboken) ; 70(2): 275-283, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28217869

RESUMO

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.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Grupo Associado , Escleroderma Sistêmico/terapia , Grupos de Autoajuda , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Canadá , Estudos Transversais , Relações Familiares , Feminino , Pesquisas sobre Atenção à Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Escleroderma Sistêmico/diagnóstico , Escleroderma Sistêmico/psicologia , Apoio Social , Estados Unidos , Adulto Jovem
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