Examination of the effects of COVID-19 on the psychosocial life and the sources of social support of people with rare diseases in Turkey

2021 ◽  
pp. 1-15
Author(s):  
Merve Pak Güre ◽  
Mustafa Karataş ◽  
Veli Duyan
Keyword(s):  
Social Support ◽  
Rare Diseases

scholarly journals Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation

2020 ◽  
Vol 17 (23) ◽  
pp. 8975
Author(s):  
Johannes Boettcher ◽  
Jonas Denecke ◽  
Claus Barkmann ◽  
Silke Wiegand-Grefe
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Social Support ◽  
Family Functioning ◽  
Protective Factors ◽  
Rare Diseases ◽  
Coping Mechanisms ◽  
Mothers And Fathers

(1) Parents caring for children and adolescents with rare diseases fear the long-term progression of the child’s disease and the loss of their parental role. The aim of this study was to examine the quality of life, mental health and associated protective factors of mothers and fathers caring for children with rare diseases requiring mechanical long-term ventilation. (2) In a cross-sectional design, data on quality of life, mental health, coping mechanisms, social support and family functioning from n = 75 affected families were collected using standardized psychometric questionnaires. (3) Mothers compared to fathers were significantly more impaired in their quality of life and mental health. Protective factors significantly associated with the respective outcomes for mothers were coping mechanisms, social support and family functioning, whereas for fathers solely the latter was found to be significant. Multiple regression analyses showed that family functioning may be the most important predictor of quality of life and mental health. (4) The results support the need for family-oriented care in parents of children with rare diseases. To reach optimal efficiency, health care providers should not only screen parents for psychosocial impairment but also provide interventions that consider gender-specific differences in psychological health.

Social support, stress, and life satisfaction among adults with rare diseases.

2020 ◽  
Vol 39 (10) ◽  
pp. 912-920
Author(s):  
Brooke A. Bryson ◽  
Kathleen R. Bogart
Keyword(s):  
Social Support ◽  
Life Satisfaction ◽  
Rare Diseases

The Collaborative Network Approach: a model for advancing patient-centric research for Castleman disease and other rare diseases

2019 ◽  
Vol 3 (1) ◽  
pp. 97-105
Author(s):  
Mary Zuccato ◽  
Dustin Shilling ◽  
David C. Fajgenbaum
Keyword(s):  
Rare Diseases ◽  
Treatment Options ◽  
Castleman Disease ◽  
High Impact ◽  
Collaborative Network ◽  
Network Approach ◽  
Grant Applications ◽  
Research Questions ◽  
Novel Strategy ◽  
Patient Centric

Abstract There are ∼7000 rare diseases affecting 30 000 000 individuals in the U.S.A. 95% of these rare diseases do not have a single Food and Drug Administration-approved therapy. Relatively, limited progress has been made to develop new or repurpose existing therapies for these disorders, in part because traditional funding models are not as effective when applied to rare diseases. Due to the suboptimal research infrastructure and treatment options for Castleman disease, the Castleman Disease Collaborative Network (CDCN), founded in 2012, spearheaded a novel strategy for advancing biomedical research, the ‘Collaborative Network Approach’. At its heart, the Collaborative Network Approach leverages and integrates the entire community of stakeholders — patients, physicians and researchers — to identify and prioritize high-impact research questions. It then recruits the most qualified researchers to conduct these studies. In parallel, patients are empowered to fight back by supporting research through fundraising and providing their biospecimens and clinical data. This approach democratizes research, allowing the entire community to identify the most clinically relevant and pressing questions; any idea can be translated into a study rather than limiting research to the ideas proposed by researchers in grant applications. Preliminary results from the CDCN and other organizations that have followed its Collaborative Network Approach suggest that this model is generalizable across rare diseases.

Conflict Avoidance in Old Age

GeroPsych ◽  
2017 ◽  
Vol 30 (2) ◽  
pp. 61-70 ◽  
Author(s):  
Lia Oberhauser ◽  
Andreas B. Neubauer ◽  
Eva-Marie Kessler
Keyword(s):  
Social Support ◽  
Perceived Social Support ◽  
Well Being ◽  
Cross Sectional Study ◽  
Conflict Avoidance ◽  
Subjective Well Being ◽  
Sectional Study ◽  
Cross Sectional ◽  
Adult Lifespan ◽  
Set Up

Abstract. Conflict avoidance increases across the adult lifespan. This cross-sectional study looks at conflict avoidance as part of a mechanism to regulate belongingness needs ( Sheldon, 2011 ). We assumed that older adults perceive more threats to their belongingness when they contemplate their future, and that they preventively react with avoidance coping. We set up a model predicting conflict avoidance that included perceptions of future nonbelonging, termed anticipated loneliness, and other predictors including sociodemographics, indicators of subjective well-being and perceived social support (N = 331, aged 40–87). Anticipated loneliness predicted conflict avoidance above all other predictors and partially mediated the age-association of conflict avoidance. Results suggest that belongingness regulation accounts may deepen our understanding of conflict avoidance in the second half of life.

Testing the Strain Theory of Suicide – The Moderating Role of Social Support

Crisis ◽  
2020 ◽  
Vol 41 (2) ◽  
pp. 82-88 ◽  
Author(s):  
Bob Lew ◽  
Ksenia Chistopolskaya ◽  
Yanzheng Liu ◽  
Mansor Abu Talib ◽  
Olga Mitina ◽  
...  
Keyword(s):  
Social Support ◽  
Suicidal Behavior ◽  
Online Survey ◽  
Perceived Social Support ◽  
Strain Theory ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Psychological Strains ◽  
Moderating Role

Abstract. Background: According to the strain theory of suicide, strains, resulting from conflicting and competing pressures in an individual's life, are hypothesized to precede suicide. But social support is an important factor that can mitigate strains and lessen their input in suicidal behavior. Aims: This study was designed to assess the moderating role of social support in the relation between strain and suicidality. Methods: A sample of 1,051 employees were recruited in Beijing, the capital of China, through an online survey. Moderation analysis was performed using SPSS PROCESS Macro. Social support was measured with the Multidimensional Scale of Perceived Social Support, and strains were assessed with the Psychological Strains Scale. Results: Psychological strains are a good predictor of suicidality, and social support, a basic need for each human being, moderates and decreases the effects of psychological strains on suicidality. Limitations: The cross-sectional survey limited the extent to which conclusions about causal relationships can be drawn. Furthermore, the results may not be generalized to the whole of China because of its diversity. Conclusion: Social support has a tendency to mitigate the effects of psychological strains on suicidality.

It Gets Better Videos for Suicide Prevention in LGBTIQ+ Adolescents

Crisis ◽  
2020 ◽  
pp. 1-8 ◽  
Author(s):  
Stefanie Kirchner ◽  
Benedikt Till ◽  
Martin Plöderl ◽  
Thomas Niederkrotenthaler
Keyword(s):  
Social Support ◽  
Suicidal Ideation ◽  
Gay Men ◽  
Suicide Prevention ◽  
Coming Out ◽  
German Language ◽  
Professional Help ◽  
Characteristics Method ◽  
Sexual Orientations ◽  
It Gets Better Project

Abstract. Background: The It Gets Better project aims to help prevent suicide among lesbian, gay, bisexual, transgender, intersex, and queer (LGBTIQ+) adolescents. It features personal video narratives portraying how life gets better when struggling with adversities. Research on the contents of messages is scarce. Aims: We aimed to explore the content of videos in the Austrian It Gets Better project regarding the representation of various LGBTIQ+ groups and selected content characteristics. Method: A content analysis of all German-language videos was conducted ( N = 192). Messages related to coming out, stressors experienced, suicidal ideation/behavior, and on how things get better were coded. Results: Representation was strong for gay men ( n = 45; 41.7%). Coming out to others was mainly positively framed ( n = 31; 46.3%) and seen as a tool to make things better ( n = 27; 37.5%). Social support ( n = 42; 62.7%) and self-acceptance ( n = 37; 55.2%) were prevalent topics. Common stressors included a conservative setting ( n = 18, 26.9%), and fear of outing ( n = 17; 25.4%). Suicidality ( n = 9; 4.7%) and options to get professional help ( n = 7; 8.2%) were rarely addressed. Limitations: Only aspects explicitly brought up in the videos were codeable. Conclusion: Videos do not fully represent gender identities and sexual orientations. Messaging on suicidality and professional help require strengthening to tailor them better for suicide prevention.

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