scholarly journals Codifying Online Social Support for Breast Cancer Patients: Retrospective Qualitative Assessment (Preprint)

2018 ◽  
Author(s):  
Jude P Mikal ◽  
Stuart W Grande ◽  
Michael J Beckstrand

BACKGROUND Social media has emerged as the epicenter for exchanging health-related information, resources, and emotional support. However, despite recognized benefits of social media for advancing health-promoting support exchange, researchers have struggled to differentiate between the different ways social support occurs and is expressed through social media. OBJECTIVE The objective of this study was to develop a fuller understanding of social support exchange by examining the ways in which breast cancer patients discuss their health needs and reach out for support on Facebook and to develop a coding schema that can be useful to other social media researchers. METHODS We conducted a retrospective qualitative assessment of text-based social support exchanges through Facebook among 30 breast cancer survivors. Facebook wall data were systematically scraped, organized, coded, and characterized by whether and which types of support were exchanged. Research questions focused on how often participants posted related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socioemotional support requests broadcast by patients on the site. RESULTS A novel ground-up coding schema applied to unwieldy Facebook data successfully identified social support exchange in two critical transitions in cancer treatment: diagnosis and transition off cancer therapy. Explanatory coding, design, and analysis processes led to a novel coding schema informed by 100,000 lines of data, an a priori literature review, and observed online social support exchanges. A final coding schema permits a compelling analysis of support exchange as a type of peer community, where members act proactively to buffer stress effects associated with negative health experiences. The coding schema framed operational definitions of what support meant and the forms each type of support could take in social media spaces. CONCLUSIONS Given the importance of social media in social interaction, support exchange, and health promotion, our findings provide insight and clarity for researchers into the different forms informational, resource, and emotional support may take in Web-based social environments. Findings support broader continuity for evaluating computer-mediated support exchange.

10.2196/12880 ◽  
2019 ◽  
Vol 21 (10) ◽  
pp. e12880 ◽  
Author(s):  
Jude P Mikal ◽  
Stuart W Grande ◽  
Michael J Beckstrand

Background Social media has emerged as the epicenter for exchanging health-related information, resources, and emotional support. However, despite recognized benefits of social media for advancing health-promoting support exchange, researchers have struggled to differentiate between the different ways social support occurs and is expressed through social media. Objective The objective of this study was to develop a fuller understanding of social support exchange by examining the ways in which breast cancer patients discuss their health needs and reach out for support on Facebook and to develop a coding schema that can be useful to other social media researchers. Methods We conducted a retrospective qualitative assessment of text-based social support exchanges through Facebook among 30 breast cancer survivors. Facebook wall data were systematically scraped, organized, coded, and characterized by whether and which types of support were exchanged. Research questions focused on how often participants posted related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socioemotional support requests broadcast by patients on the site. Results A novel ground-up coding schema applied to unwieldy Facebook data successfully identified social support exchange in two critical transitions in cancer treatment: diagnosis and transition off cancer therapy. Explanatory coding, design, and analysis processes led to a novel coding schema informed by 100,000 lines of data, an a priori literature review, and observed online social support exchanges. A final coding schema permits a compelling analysis of support exchange as a type of peer community, where members act proactively to buffer stress effects associated with negative health experiences. The coding schema framed operational definitions of what support meant and the forms each type of support could take in social media spaces. Conclusions Given the importance of social media in social interaction, support exchange, and health promotion, our findings provide insight and clarity for researchers into the different forms informational, resource, and emotional support may take in Web-based social environments. Findings support broader continuity for evaluating computer-mediated support exchange.


Author(s):  
Johanna Sophie Lubasch ◽  
Susan Lee ◽  
Christoph Kowalski ◽  
Marina Beckmann ◽  
Holger Pfaff ◽  
...  

(1) Background: Evidence suggests that organizational processes of hospitals have an impact on patient-professional interactions. Within the nurse-patient interaction, nurses play a key role providing social support. Factors influencing the nurse-patient interaction have seldomly been researched. We aimed to examine whether the process organization in hospitals is associated with breast cancer patients’ perceived social support from nurses.; (2) Methods: Data analysis based on a cross-sectional patient survey (2979 breast cancer patients, 83 German hospitals) and information on hospital structures. Associations between process organization and perceived social support were analyzed with logistic hierarchical regression models adjusted for patient characteristics and hospital structures.; (3) Results: Most patients were 40–69 years old and classified with UICC stage II or III. Native language, age and hospital ownership status showed significant associations to the perception of social support. Patients treated in hospitals with better process organization at admission (OR 3.61; 95%-CI 1.67, 7.78) and during the hospital stay (OR 2.11; 95%-CI 1.04; 4.29) perceived significantly more social support from nurses.; (4) Conclusions: Designing a supportive nursing work environment and improving process organization in hospitals may create conditions conducive for a supportive patient-nurse interaction. More research is needed to better understand mechanisms behind the associations found.


Author(s):  
C. T. Sánchez-Díaz ◽  
S. Strayhorn ◽  
S. Tejeda ◽  
G. Vijayasiri ◽  
G. H. Rauscher ◽  
...  

Abstract Background Prior studies have observed greater levels of psychosocial stress (PSS) among non-Hispanic (nH) African American and Hispanic women when compared to nH White patients after a breast cancer diagnosis. We aimed to determine the independent and interdependent roles of socioeconomic position (SEP) and unmet support in the racial disparity in PSS among breast cancer patients. Methods Participants were recruited from the Breast Cancer Care in Chicago study (n = 989). For all recently diagnosed breast cancer patients, aged 25–79, income, education, and tract-level disadvantage and affluence were summed to create a standardized socioeconomic position (SEP) score. Three measures of PSS related to loneliness, perceived stress, and psychological consequences of a breast cancer diagnosis were defined based on previously validated scales. Five domains of unmet social support needs (emotional, spiritual, informational, financial, and practical) were defined from interviews. We conducted path models in MPlus to estimate the extent to which PSS disparities were mediated by SEP and unmet social support needs. Results Black and Hispanic patients reported greater PSS compared to white patients and greater unmet social support needs (p = 0.001 for all domains). Virtually all of the disparity in PSS could be explained by SEP. A substantial portion of the mediating influence of SEP was further transmitted by unmet financial and practical needs among Black patients and by unmet emotional needs for Hispanic patients. Conclusions SEP appeared to be a root cause of the racial/ethnic disparities in PSS within our sample. Our findings further suggest that different interventions may be necessary to alleviate the burden of SEP for nH AA (i.e., more financial support) and Hispanic patients (i.e., more emotional support).


2019 ◽  
Vol 50 (1) ◽  
pp. 54-66
Author(s):  
Rizwana Roomaney ◽  
Ashraf Kagee ◽  
Nina Knoll

Research in the field of psycho-oncology in South Africa is increasing, and there is a need for validated measures that assess factors associated with cancer, such as social support. The Berlin Social Support Scales are a battery of instruments that measure various types and functions of social support. The measure was originally developed for use among adult cancer patients, and their partners but has also been used among other clinical populations and healthy adults. We investigated the psychometric properties of the English version of the perceived and received sub-scales, Berlin Social Support Scales. Our sample included South African women ( N = 201) who were diagnosed with breast cancer and receiving treatment at a public health care facility. We administered several measures, including a demographic questionnaire, the Berlin Social Support subscales, the Duke-UNC Functional Social Support Questionnaire, and The Functional Assessment of Cancer Therapy to participants. Validity and reliability analyses were conducted. Factor analysis resulted in the retention of 17 items that clustered on two factors, namely received support and perceived support. The 17-item version of the Berlin Social Support Scale demonstrated strong reliability and validity in the sample. The two subscales are quick to administer, easy to interpret, and are a reliable measure of social support among breast cancer patients in South Africa.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e12051-e12051
Author(s):  
Tal Sella ◽  
Gabriel Chodick

e12051 Background: Adjuvant hormonal therapy has been consistently proven to improve multiple outcomes in early breast cancer. Nonetheless, data on rates of adherence and persistence with therapy outside West Europe and North America are scarce. We assessed the adherence and persistence with adjuvant hormonal in a retrospective population based cohort of breast cancer survivors in Maccabi Health Services (MHS), Israel. Methods: We identified women who were diagnosed with breast cancer and initiated adjuvant hormonal therapy between January 2000 and November 2008. Subjects were followed retrospectively from first dispensed tamoxifen or aromatase inhibitor (AI) and up to the earliest of the following events: disease recurrence (indicated by surgery, radiotherapy, chemotherapy or other related therapies), leaving MHS, death, or completion of 5 years of treatment. Discontinuation of therapy was defined as a 180-day or longer treatment gap. Adherence with therapy was assessed using proportion of days covered (PDC) during follow-up period. Survival analysis was used to determine the effect of adherence on all-cause mortality. Results: A total of 4178 women with breast cancer were followed for a median 7.8 years. Over 90% of patients received tamoxifen as the initial hormonal agent. Mean PDC was 84% with lower rates associated with younger age, smoking status, comorbidities and year of diagnosis. Residential area did not affect adherence. Differences were not found. Discontinuation of therapy occurred in 23% of study patients. Among persistent patients, 70% were optimally adherent with therapy (PDC>=80%). Association between adherence with therapy and survival is investigated. Conclusions: Adherence to adjuvant hormonal therapy among Israeli breast cancer patients with national health insurance is high in comparison to international reports. Nevertheless, suboptimal adherence was identified among younger (<45y) patients. Because of the efficacy of hormonal therapy in preventing recurrence and death in women with early-stage breast cancer, interventions are necessary to identify and prevent suboptimal adherence among high risk subgroups.


2018 ◽  
Vol 4 (2) ◽  
pp. 96-98
Author(s):  
Soumi Pathak ◽  
Ajay Kumar Bhargava

Breast cancer is the commonest cancer in women worldwide. In the developing countries of Asia, the health care burden on account of breast cancer has been steadily mounting. Over 100,000 new breast cancer patients are estimated to be diagnosed annually in India.1 As per the ICMR-PBCR data, breast cancer is the commonest cancer among women in urban registries of Delhi, Mumbai, Ahmedabad, Calcutta, and Trivandrum where it constitutes > 30% of all cancers in females. Previous literature on mastectomy indicates that the operation may be perceived by the patient as a threat to her feminity. Breast cancer survivors have dissatisfaction with appearance, perceived loss of femininity and body integrity, self-consciousness about appearance, and dissatisfaction with surgical scars… Journal of Society of Anesthesiologists of NepalVol. 4, No. 2, 2017, Page: 96-98 


2021 ◽  
Author(s):  
Athira B ◽  
Josette Jones ◽  
Sumam Mary Idicula ◽  
Anand Kulanthaivel ◽  
Enming Zhang

Abstract The widespread influence of social media impacts every aspect of life, including the healthcare sector. Although medics and health professionals are the final decision makers, the advice and recommendations obtained from fellow patients are significant. In this context, the present paper explores the topics of discussion posted by breast cancer patients and survivors on online forums. The study examines an online forum, Breastcancer.org, maps the discussion entries to several topics, and proposes a machine learning model based on a classification algorithm to characterize the topics. To explore the topics of breast cancer patients and survivors, approximately 1000 posts are selected and manually labeled with annotations. In contrast, millions of posts are available to build the labels. A semi-supervised learning technique is used to build the labels for the unlabeled data; hence, the large data are classified using a deep learning algorithm. The deep learning algorithm BiLSTM with BERT word embedding technique provided a better f1-score of 79.5%. This method is able to classify the following topics: medication reviews, clinician knowledge, various treatment options, seeking and providing support, diagnostic procedures, financial issues and implications for everyday life. What matters the most for the patients is coping with everyday living as well as seeking and providing emotional and informational support. The approach and findings show the potential of studying social media to provide insight into patients' experiences with cancer like critical health problems.


2021 ◽  
Author(s):  
Maryam Vasaghi Gharamaleki ◽  
Seyedeh Zahra Mousavi ◽  
Maryam Owrangi ◽  
Mohammad Javad Gholamzadeh ◽  
Ali-Mohammad Kamali ◽  
...  

Background: Post-chemotherapy cognitive impairment commonly known as "chemobrain" or "chemofog" is a well-established clinical disorder affecting various cognitive domains including attention, visuospatial working memory, executive function, etc. Although several studies have confirmed the chemobrain in recent years, scant experiments have evaluated the potential neurotoxicity of different chemotherapy regimens and agents. In this study, we aimed to evaluate the extent of attention deficits, one of the commonly affected cognitive domains, among breast cancer patients treated with different chemotherapy regimens through neuroimaging techniques. Methods: Breast cancer patients treated with two commonly prescribed chemotherapy regimens, AC-T and TAC, and healthy volunteers were recruited. Near-infrared hemoencephalography (nirHEG) and quantitative electroencephalography (qEEG) assessments were recorded for each participant at rest and during task performance to compare the functional cortical changes associated with each chemotherapy regimen. Results: The qEEG analysis revealed increased power of high alpha/low beta or sensorimotor rhythm (SMR) frequency in left fronto-centro-parietal regions involved in dorsal and ventral attention networks (DAN and VAN) in the AC-T-treated group comparing to the TAC and control group. The AC-T group also had the highest current source density (CSD) values in DAN and VAN-related centers in 10 and 15 Hz associated with the lowest Z-scored FFT coherence in the mentioned regions. Conclusions: The mentioned findings revealed increased cognitive workload and lack of cognitive ease in breast cancer patients treated with the AC-T regimen proposing the presumable neurotoxic sequelae of this chemotherapy regimen in comparison with the TAC regimen.


2020 ◽  
Vol 19 ◽  
pp. 153473542093845
Author(s):  
Ke Ding ◽  
Xiuqing Zhang ◽  
Jingjing Zhao ◽  
He Zuo ◽  
Ziran Bi ◽  
...  

Objective: To evaluate the effectiveness and feasibility of Managing Cancer and Living Meaningfully (CALM), which is used to reduce chemotherapy-related cognitive impairment (CRCI), relieve psychological distress, and improve quality of life (QOL) in Chinese breast cancer survivors (BCs). Methods: Seventy-four BCs were enrolled in this study. All patients were randomly assigned to either the CALM group or the care as usual (CAU) group. All patients were evaluated by the Functional Assessment of Cancer Therapy–Cognitive Function (FACT-Cog), Distress Thermometer (DT), and the Functional Assessment of Cancer Therapy–Breast (FACT-B) before and after CALM or CAU application to BCs with CRCI. We compared the differences in all these scores between the CALM group and the control group and analyzed the correlation between cognitive function and QOL. Results: Compared with the CAU group, the performance of the CALM group on the FACT-Cog, DT, and FACT-B showed significant differences before and after CALM ( t = −18.909, −5.180, −32.421, P = .000, .000, .000, respectively). Finally, there was a positive correlation between cognitive function and QOL in breast cancer patients before ( r = 0.579, P = .000) and after ( r = 0.797, P = .000) treatment. Conclusions: The present results indicated that CALM has salutary effects on the improvement of cognitive impairment and QOL and relieves psychological distress in breast cancer patients, which may be due to a positive correlation between psychological distress and cognitive function or QOL.


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