Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients' Experiences: A Thematic Analysis.

Background and ObjectivesAs there is an increasing reliance on the internet for medical information, patients diagnosed with rare diseases have turned to online community forums to share information about their diagnoses. These forums help patients to gather and share information about their experience with disease. Additionally, these platforms enable patients to build unique connections based on their shared experiences. The objective of this study was to review shared posts in online community forums by individuals with soft tissue sarcomas to better understand commonly discussed themes. This information may improve the physicians’ understanding of patients’ concerns and feelings at the time of diagnosis and treatment. MethodsWe entered “sarcoma discussion forum” in search engines to identify internet discussion boards. Four major discussion forums were analyzed, and posts written between January 1, 2017 through May 1, 2022 addressing soft tissue sarcomas present in the upper and lower extremities were collected. Each post was analyzed by the two investigators in three steps (open coding, axial coding, and selective coding). ResultsA total of 506 posts were included in the final analysis. We used twenty-seven axial codes and four selective codes. Emotional Aspects/Connecting with Others was the most common theme (77 % of posts) followed by Information Support: Treatment (38 % of posts), Information Support: Diagnosis (24 % of posts) and Information Support: Recovery (21 % of posts). ConclusionsThe most prevalent theme was centered on emotional aspects of these patients’ journeys, highlighting the importance of providing resources to address emotional support for patients with soft tissue sarcoma and their families. Level IVQualitative research study

BackgroundLong COVID has widened the health gap across society and highlighted the vulnerabilities and risks faced by health care systems. For instance, the global trend of medical workers resigning has become a prominent topic on social media. In response to this severe social problem in global public health within the digital society, it is urgent to investigate how the professional identity of medical students, who are digital natives and the future workforce of medical practitioners, is affected by the media environment.ObjectiveThis study aims to examine how media exposure relates to medical students’ perceptions of informational and emotional support, and how these perceptions further influence the development of their professional identity.MethodsBuilding on the Stimulus-Organism-Response (SOR) framework, this study develops a theoretical model to illustrate how media exposure affects medical students’ professional identity through the mediation of social support. Specifically, media exposure was assessed through online news media and social media exposure; social support was evaluated in terms of informational and emotional support; and professional identity was measured through medical students’ sense of belonging and professional commitment. A survey was conducted at a medical school in China, yielding 1087 valid responses that were analyzed using SmartPLS 4.0.ResultsConsistent with our expectations, online news media exposure was positively associated with both informational support (β=.163; P<.001) and emotional support (β=.084; P=.007). Similarly, social media exposure showed positive associations with informational support (β=.122; P<.001) and emotional support (β=.235; P<.001). Thereafter, informational support (β=.228; P<.001) and emotional support (β=.344; P<.001) were positively associated with students’ sense of belonging. Meanwhile, both informational support (β=.245; P<.001) and emotional support (β=.412; P<.001) positively impacted medical students’ professional commitment. In addition, a mediation test was conducted. The results confirmed that informational support and emotional support partially mediated the effect of online news media, while fully mediating the effect of social media on medical students’ sense of belonging and professional commitment.ConclusionsThis study finds that exposure to online news media and social media can enhance medical students’ sense of belonging and professional commitment through the formation of informational and emotional support. It expands the discussion on the role of media in providing social support and facilitating the development of medical students’ professional identity. This is a valuable contribution to addressing complex public health crises through effective media governance in the network era.

BackgroundAlthough many people with serious diseases participate in online support communities, little research has investigated how participants elicit and provide social support on these sites.ObjectiveThe first goal was to propose and test a model of the dynamic process through which participants in online support communities elicit and provide emotional and informational support. The second was to demonstrate the value of computer coding of conversational data using machine learning techniques (1) by replicating results derived from human-coded data about how people elicit support and (2) by answering questions that are intractable with small samples of human-coded data, namely how exposure to different types of social support predicts continued participation in online support communities. The third was to provide a detailed description of these machine learning techniques to enable other researchers to perform large-scale data analysis in these communities.MethodsCommunication among approximately 90,000 registered users of an online cancer support community was analyzed. The corpus comprised 1,562,459 messages organized into 68,158 discussion threads. Amazon Mechanical Turk workers coded (1) 1000 thread-starting messages on 5 attributes (positive and negative emotional self-disclosure, positive and negative informational self-disclosure, questions) and (2) 1000 replies on emotional and informational support. Their judgments were used to train machine learning models that automatically estimated the amount of these 7 attributes in the messages. Across attributes, the average Pearson correlation between human-based judgments and computer-based judgments was .65.ResultsPart 1 used human-coded data to investigate relationships between (1) 4 kinds of self-disclosure and question asking in thread-starting posts and (2) the amount of emotional and informational support in the first reply. Self-disclosure about negative emotions (beta=.24, P<.001), negative events (beta=.25, P<.001), and positive events (beta=.10, P=.02) increased emotional support. However, asking questions depressed emotional support (beta=–.21, P<.001). In contrast, asking questions increased informational support (beta=.38, P<.001), whereas positive informational self-disclosure depressed it (beta=–.09, P=.003). Self-disclosure led to the perception of emotional needs, which elicited emotional support, whereas asking questions led to the perception of informational needs, which elicited informational support. Part 2 used machine-coded data to replicate these results. Part 3 analyzed the machine-coded data and showed that exposure to more emotional support predicted staying in the group longer 33% (hazard ratio=0.67, P<.001), whereas exposure to more informational support predicted leaving the group sooner (hazard ratio=1.05, P<.001).ConclusionsSelf-disclosure is effective in eliciting emotional support, whereas question asking is effective in eliciting informational support. Moreover, perceptions that people desire particular kinds of support influence the support they receive. Finally, the type of support people receive affects the likelihood of their staying in or leaving the group. These results demonstrate the utility of machine learning methods for investigating the dynamics of social support exchange in online support communities.

BackgroundShorter breastfeeding duration is associated with detrimental consequences for infant health/development and maternal health. Previous studies suggest social support is essential in maintaining breast/chest-feeding and helping to improve general infant feeding experiences. Public health bodies therefore work to support breastfeeding in the UK, yet UK breastfeeding rates continue to be one of the lowest globally. With this, a better understanding of the effectiveness and quality of infant feeding support is required. In the UK, health visitors (community public health nurses specialising in working with families with a child aged 0–5 years) have been positioned as one of the key providers of breast/chest-feeding support. Research evidence suggests that both inadequate informational support and poor/negative emotional support can lead to poor breastfeeding experiences and early breastfeeding cessation. Thus, this study tests the hypothesis that emotional support from health visitors moderates the relationship between informational support and breastfeeding duration/infant feeding experience among UK mothers.MethodsWe ran cox and binary logistic regression models on data from 565 UK mothers, collected as part of a 2017–2018 retrospective online survey on social support and infant feeding.ResultsInformational support, compared to emotional support, was a less important predictor of both breastfeeding duration and experience. Supportive emotional support with unhelpful or absent informational support was associated with the lowest hazard of breastfeeding cessation before 3 months. Results for breastfeeding experience followed similar trends, where positive experience was associated with supportive emotional and unhelpful informational support. Negative experiences were less consistent; however, a higher probability of negative experience was found when both types of support were reported as unsupportive.ConclusionsOur findings point to the importance of health visitors providing emotional support to bolster the continuation of breastfeeding and encourage a positive subjective experience of infant feeding. The emphasis of emotional support in our results encourages increased allocation of resources and training opportunities to ensure health visitors are able to provide enhanced emotional support. Lowering health visitors caseloads to allow for personalised care is just one actionable example that may improve breastfeeding outcomes in the UK.

We evaluated the helpfulness of informational, emotional, and decision-making support received by women newly diagnosed with breast cancer from their family, friends, and health care providers. Data were collected at two time points via patient surveys: baseline on an average 2 months post-diagnosis and follow-up at 5 months post-baseline. In the period closer to diagnosis, majority of the women received helpful informational support from health care providers (84.0%); helpful emotional support from family (85%), friends (80.4%), and providers (67.1%); and helpful decision-making support from providers (75.2%) and family (71.0%). Emotional support at baseline and emotional and informational support at 5-month follow-up were significantly associated with patients' health-related quality of life and self-efficacy outcomes (p<0.01). Perceived helpfulness of informational, emotional, and decision-making support provided by family, friends, and providers however significantly decreased over time (p<0.001). Cancer patients' desire significant amount of support throughout their cancer journey. Our results show that while patients receive a lot of support during the period closer to diagnosis, receipt of helpful support drops significantly within the first year itself. In order to facilitate cancer patients' adjustment to their illness, efforts need to be made to understand and address their support needs throughout the cancer experience.

Background and purpose: The quality of life of people living with HIV is influenced by many factors, one of which is social support. Social support consists of four elements, namely information, instrumental, emotional and appraisal supports. Publication on the association between the quality of life of people living with HIV and the four elements of social support shows inconsistent results. The purpose of this study is to determine the association between the four elements of social support and the quality of life of people living with HIV. Methods: A cross-sectional survey was carried out at the WM Medika Clinic, Kerti Praja Foundation, Denpasar, Bali. Samples were people living with HIV who came to the clinic between July-August 2018 to take antiretroviral (ARV) drugs. The total number of samples was 92 patients selected through the convenience sampling. Data was collected by conducting individual interviews and consisted of respondent characteristics, quality of life, information, instrumental, emotional and appraisal supports. Data were analyzed using logistic regression to determine the association between social support and quality of life of people living with HIV. Results: Emotional support was the only element of social support found to be significantly associated with quality of life of people living with HIV with AOR=4.918 (95%CI: 1.268-19.082). Whereas the other three elements were not found to be related to the quality of life of people living with HIV, these were instrumental support (AOR=0.865; 95%CI: 0.228-3.278); information support (AOR=0.949; 95%CI: 0.248-3.637); and appraisal support (AOR=0.317; 95%CI: 0.095- 1.057). Conclusion: The quality of life of people living with HIV is found to be related to emotional support and is not found to be related to information, instrumental and appraisal supports. Emotional support needs to be addressed in order to further improve the quality of life of people living with HIV.

Background and purpose: The quality of life of people living with HIV is influenced by many factors, one of which is social support. Social support consists of four elements, namely information, instrumental, emotional and appraisal supports. Publication on the association between the quality of life of people living with HIV and the four elements of social support shows inconsistent results. The purpose of this study is to determine the association between the four elements of social support and the quality of life of people living with HIV.Methods: A cross-sectional survey was carried out at the WM Medika Clinic, Kerti Praja Foundation, Denpasar, Bali. Samples were people living with HIV who came to the clinic between July-August 2018 to take antiretroviral (ARV) drugs. The total number of samples was 92 patients selected through the convenience sampling. Data was collected by conducting individual interviews and consisted of respondent characteristics, quality of life, information, instrumental, emotional and appraisal supports. Data were analyzed using logistic regression to determine the association between social support and quality of life of people living with HIV.Results: Emotional support was the only element of social support found to be significantly associated with quality of life of people living with HIV with AOR=4.918 (95%CI: 1.268-19.082). Whereas the other three elements were not found to be related to the quality of life of people living with HIV, these were instrumental support (AOR=0.865; 95%CI: 0.228-3.278); information support (AOR=0.949; 95%CI: 0.248-3.637); and appraisal support (AOR=0.317; 95%CI: 0.095-1.057).Conclusion: The quality of life of people living with HIV is found to be related to emotional support and is not found to be related to information, instrumental and appraisal supports. Emotional support needs to be addressed in order to further improve the quality of life of people living with HIV.

The objectives of the study are to investigate (i) the level of social support, social adjustment, and psychological adjustment; and (ii) the effects of social support (emotional, informational, and instrumental support) on social adjustment, psychological adjustment, and psychosocial adjustment among childless women. A total of 334 woman respondents were surveyed using a simple random sampling technique. Factor analysis, reliability analysis, confirmatory factor analysis, and multiple linear regression analysis were used to analyze the data. In the overall model, emotional support, instrumental support, and informational support were significantly associated with social adjustment. In addition, emotional support and instrumental support were significant with psychological adjustment. Furthermore, emotional support, instrumental support, and informational support were the predictors of psychosocial adjustment among childless women. This study contributed to the broader avenues of understanding social support such as husband, in-laws, friends, and relatives, and the accumulation of social support among the childless women in the patriarchal society. The findings highlighted the efficacy and utility of the centuries-old social institution of family as a major predictor of psychosocial support to the childless woman. It subsidized to the limited body of research on provision of social support and psychosocial adjustment among childless women in the patriarchal society.

ICRE Top Research Abstracts

University students with disabilities face an increased risk of experiencing negative implications in educational, psychological, and social spheres during the COVID-19 pandemic. This study aimed at assessing various dimensions of social support and its sources during the COVID-19 pandemic that availed university students with disabilities. This cross-sectional descriptive study collected data from 53 university students with disabilities. We administered the Social Support Scale (SSC) to assess five dimensions: informational, emotional, esteem, social integration and tangible support, and access to social support from four sources: family, friends, teachers, and colleagues. Multiple regression analysis showed that university students with disabilities mainly relied upon their friends for informational support (β = 0.64; p < 0.001), emotional support (β = 0.52; p < 0.001), and social integration support (β = 0.57; p < 0.001). Family members (β = 0.406; p < 0.01) and colleagues (β = 0.36; p < 0.01) provided esteem support to students with disabilities. Support from teachers demonstrated an association with informational support (β = 0.24; p < 0.05). The findings from the current study suggest that students with disabilities primarily sought informational, emotional, and social integration support from their peers. Although teachers were the primary source of informational support, emotional and esteem support were not found to be significantly associated with them. These findings necessitate exploring the underlying factors and how to enhance them during unusual circumstances such as online distance education and social distancing.

Introduction: In the literature on the problem of social support, besides family sources of support, (husband, wife, children, parents, siblings, relatives), a role of friends, acquaintances and neighbors is emphasized. Purpose: To assess types and level of support that parents receive from specific social groups. Materials and methods: The study included 108 mothers and 108 fathers of intellectually disabled children. We used the original questionnaire and the standardized scale of Social Support by KmiecikBaran. Results: There were differences between the parents in emotional support (standard deviation 3.519), the lowest in informative support (deviation 2.744). General support was poor in the opinion of 34.6% of the parents. Average institutional support related to 42.9% of the parents, strong evaluative support – 37.1% and strong emotional support – 41%. The parents received the strongest informative, institutional, evaluative and emotional support from nurses and physicians. Spouses of the examined gave them poor informative, emotional and institutional support and average evaluative support. Statistically, the fathers received significantly stronger evaluative and emotional support – by more than one point, and by more than 3 points in case of general support than mothers. Conclusions: The parents received average social support, however, it was below the average for the Polish adult population. The spouses gave them poor informative, emotional and institutional support and average evaluative support; teachers, physicians and nurses – average support in all categories, however, in case of the two latter – institutional and evaluative support was close to the above-average values. The fathers enjoyed moderately stronger evaluative, emotional and general support from teachers, physicians and nurses than mothers.

This thesis focused on the extent to which cancer patients desired, sought, and received social support, as well as on the extent to which the patients were satisfied with the social support they received. The three types of social support studied were informational, aid/assistance, and emotional support. These types of social support were examined for two sources of social support -- health care workers, and family members/friends. Additional aims of the research were to study relationships between social support and the patient’s physical and psychological adjustment to their cancer, and to examine relationships between aspects of social support and the degree of stress associated with the two support sources. The method of the thesis involved asking a sample of 39 cancer patients (18 male, 21 female) with different types of cancer to complete mailed questionnaires. The questionnaires were sent with a cover letter that explained the general purpose of the research as well as their medical center’s cooperation with the study. Each questionnaire consisted of self-report measures that included a modified version of the UCLA Social Support Inventory and measures of the patient’s physical and psychological adjustment to their cancer. Results indicated that cancer patients received more informational support from health care workers than from family members/friends; on the other hand, they received more aid/assistance and emotional support from family members/friends than from health care workers. Informational and emotional support were more desired by the patients than was aid/assistance. Patients reported receiving as much informational support as they desired, and reported receiving more aid/assistance and emotional support than they desired. Results indicated a high degree of satisfaction with all types of support. There were no differences in the extent to which cancer patients sought the three different types of social support. Surprisingly, there was negligible evidence for relationships between social support and indices of the patients’ physical and psychological adjustment to their cancer. Among the most noteworthy results of the thesis, were findings pertaining to the negative aspects of the cancer patients’ social relationships. These findings concerned a pattern of relationships between social support and the degree of stress associated with the two support sources. Higher degrees of stress from both sources were uniformly associated with greater degrees of desired social support; at the same time, the degree of stress from the two sources was unrelated to the extent to which the patients actually sought social support. Higher degrees of stress from health care workers were associated with higher degrees of received tangible aid/assistance from this source (but was unrelated to received informational and emotional support from health care workers). The degree of stress from family members/friends was unrelated to received support of any type. Finally, higher degrees of stress from the two sources were associated with lower degrees of satisfaction with aid/assistance and emotional support.

How Does Social Support Detected Automatically in Discussion Forums Relate to Online Learning Burnout? The Moderating Role of Students’ Self-Regulated Learning

ObjectivesThis study evaluated emotional, informational and instrumental support needs in patients with breast cancer who had undergone surgery, then identified the variables associated with those needs.DesignThis was a cross-sectional survey...

Introduction: The role of positron-emission tomography/computed-tomography (PET/CT) in the management of sarcomas and as a prognostic tool has been studied. However, it remains unclear which metric is the most useful. We aimed to investigate if volume-based PET metrics (Tumor volume (TV) and total lesions glycolysis (TLG)) are superior to maximal standardized uptake value (SUVmax) and other metrics in predicting survival of patients with soft tissue and bone sarcomas. Materials and Methods: In this retrospective cohort study, we screened over 52′000 PET/CT scans to identify patients diagnosed with either soft tissue, bone or Ewing sarcoma and had a staging scan at our institution before initial therapy. We used a Wilcoxon signed-rank to assess which PET/CT metric was associated with survival in different patient subgroups. Receiver-Operating-Characteristic curve analysis was used to calculate cutoff values. Results: We identified a total of 88 patients with soft tissue (51), bone (26) or Ewing (11) sarcoma. Median age at presentation was 40 years (Range: 9–86 years). High SUVmax was most significantly associated with short survival (defined as <24 months) in soft tissue sarcoma (with a median and range of SUVmax 12.5 (8.8–16.0) in short (n = 18) and 5.5 (3.3–7.2) in long survival (≥24 months) (n = 31), with (p = 0.001). Similar results were seen in Ewing sarcoma (with a median and range of SUVmax 12.1 (7.6–14.7) in short (n = 6) and 3.7 (3.5–5.5) in long survival (n = 5), with (p = 0.017). However, no PET-specific metric but tumor-volume was significantly associated (p = 0.035) with survival in primary bone sarcomas (with a median and range of 217 cm3 (186–349) in short survival (n = 4) and 60 cm3 (22–104) in long survival (n = 19), with (p = 0.035). TLG was significantly inversely associated with long survival only in Ewing sarcoma (p = 0.03). Discussion: Our analysis shows that the outcome of soft tissue, bone and Ewing sarcomas is associated with different PET/CT metrics. We could not confirm the previously suggested superiority of volume-based metrics in soft tissue sarcomas, for which we found SUVmax to remain the best prognostic factor. However, bone sarcomas should probably be evaluated with tumor volume rather than FDG PET activity.