scholarly journals Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study (Preprint)

2020 ◽  
Author(s):  
James S Wolffsohn ◽  
Claudia Leteneux-Pantais ◽  
Sima Chiva-Razavi ◽  
Sarah Bentley ◽  
Chloe Johnson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Lived Experience ◽  
The United States ◽  
Older Individuals ◽  
Near Vision ◽  
Age Related ◽  
The Impact ◽  
Manual Review

BACKGROUND Presbyopia is defined as the age-related deterioration of near vision over time which is experienced in over 80% of people aged 40 years or older. Individuals with presbyopia have difficulty with tasks that rely on near vision. It is not currently possible to stop or reverse the aging process that causes presbyopia; generally, it is corrected with glasses, contact lenses, surgery, or the use of a magnifying glass. OBJECTIVE This study aimed to explore how individuals used social media to describe their experience of presbyopia with regard to the symptoms experienced and the impacts of presbyopia on their quality of life. METHODS Social media sources including Twitter, forums, blogs, and news outlets were searched using a predefined search string relating to symptoms and impacts of presbyopia. The data that were downloaded, based on the keywords, underwent manual review to identify relevant data points. Relevant posts were further manually analyzed through a process of data tagging, categorization, and clustering. Key themes relating to symptoms, impacts, treatment, and lived experiences were identified. RESULTS A total of 4456 social media posts related to presbyopia were identified between May 2017 and August 2017. Using a random sampling methodology, we selected 2229 (50.0%) posts for manual review, with 1470 (65.9%) of these 2229 posts identified as relevant to the study objectives. Twitter was the most commonly used channel for discussions on presbyopia compared to forums and blogs. The majority of relevant posts originated in Spain (559/1470, 38.0%) and the United States (426/1470, 29.0%). Of the relevant posts, 270/1470 (18.4%) were categorized as posts written by individuals who have presbyopia, of which 37 of the 270 posts (13.7%) discussed symptoms. On social media, individuals with presbyopia most frequently reported experiencing difficulty reading small print (24/37, 64.9%), difficulty focusing on near objects (15/37, 40.5%), eye strain (12/37, 32.4%), headaches (9/37, 24.3%), and blurred vision (8/37, 21.6%). 81 of the 270 posts (30.0%) discussed impacts of presbyopia—emotional burden (57/81, 70.4%), functional or daily living impacts (46/81, 56.8%), such as difficulty reading (46/81, 56.8%) and using electronic devices (21/81, 25.9%), and impacts on work (3/81, 3.7%). CONCLUSIONS Findings from this social media listening study provided insight into how people with presbyopia discuss their condition online and highlight the impact of presbyopia on individuals’ quality of life. The social media listening methodology can be used to generate insights into the lived experience of a condition, but it is recommended that this research be combined with prospective qualitative research for added rigor and for confirmation of the relevance of the findings.

scholarly journals Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study

10.2196/18306 ◽  
2020 ◽  
Vol 22 (9) ◽  
pp. e18306
Author(s):  
James S Wolffsohn ◽  
Claudia Leteneux-Pantais ◽  
Sima Chiva-Razavi ◽  
Sarah Bentley ◽  
Chloe Johnson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Lived Experience ◽  
The United States ◽  
Older Individuals ◽  
Near Vision ◽  
Age Related ◽  
The Impact ◽  
Manual Review

Background Presbyopia is defined as the age-related deterioration of near vision over time which is experienced in over 80% of people aged 40 years or older. Individuals with presbyopia have difficulty with tasks that rely on near vision. It is not currently possible to stop or reverse the aging process that causes presbyopia; generally, it is corrected with glasses, contact lenses, surgery, or the use of a magnifying glass. Objective This study aimed to explore how individuals used social media to describe their experience of presbyopia with regard to the symptoms experienced and the impacts of presbyopia on their quality of life. Methods Social media sources including Twitter, forums, blogs, and news outlets were searched using a predefined search string relating to symptoms and impacts of presbyopia. The data that were downloaded, based on the keywords, underwent manual review to identify relevant data points. Relevant posts were further manually analyzed through a process of data tagging, categorization, and clustering. Key themes relating to symptoms, impacts, treatment, and lived experiences were identified. Results A total of 4456 social media posts related to presbyopia were identified between May 2017 and August 2017. Using a random sampling methodology, we selected 2229 (50.0%) posts for manual review, with 1470 (65.9%) of these 2229 posts identified as relevant to the study objectives. Twitter was the most commonly used channel for discussions on presbyopia compared to forums and blogs. The majority of relevant posts originated in Spain (559/1470, 38.0%) and the United States (426/1470, 29.0%). Of the relevant posts, 270/1470 (18.4%) were categorized as posts written by individuals who have presbyopia, of which 37 of the 270 posts (13.7%) discussed symptoms. On social media, individuals with presbyopia most frequently reported experiencing difficulty reading small print (24/37, 64.9%), difficulty focusing on near objects (15/37, 40.5%), eye strain (12/37, 32.4%), headaches (9/37, 24.3%), and blurred vision (8/37, 21.6%). 81 of the 270 posts (30.0%) discussed impacts of presbyopia—emotional burden (57/81, 70.4%), functional or daily living impacts (46/81, 56.8%), such as difficulty reading (46/81, 56.8%) and using electronic devices (21/81, 25.9%), and impacts on work (3/81, 3.7%). Conclusions Findings from this social media listening study provided insight into how people with presbyopia discuss their condition online and highlight the impact of presbyopia on individuals’ quality of life. The social media listening methodology can be used to generate insights into the lived experience of a condition, but it is recommended that this research be combined with prospective qualitative research for added rigor and for confirmation of the relevance of the findings.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Jason A. Randall ◽  
Aiste Guobyte ◽  
Laure Delbecque ◽  
Louise Newton ◽  
Tara Symonds ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Lived Experience ◽  
Thematic Analysis ◽  
Gastrointestinal Disease ◽  
The United States ◽  
Self Report ◽  
Related Quality ◽  
High Level

Abstract Background Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one’s most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2–11 years) living with UC. Methods Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5–11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2–4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis. Results Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life. Conclusions Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8–11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8–11 years age group.

Quality of Life of Family Caregivers of Patients With Cancer in Korçe, Albania

2018 ◽  
Vol 34 (2) ◽  
pp. 118-125 ◽  
Author(s):  
Jonathon Judkins ◽  
Irena Laska ◽  
Judith Paice ◽  
Priya Kumthekar
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Risk Groups ◽  
The United States ◽  
Primary Objective ◽  
Care Clinic ◽  
Demographic Groups ◽  
Spiritual Well Being ◽  
The Impact

Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups. Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being. Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains (“Rate your overall physical/psychological/social/spiritual well-being”). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL. Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

Using Social Media Listening to measure the impact of diseases and treatments on patients’ Health-Related Quality of Life (Preprint)

2021 ◽  
Author(s):  
Simon Renner ◽  
Tom Marty ◽  
Mickaïl Khadhar ◽  
Pierre Foulquié ◽  
Paméla Voillot ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Health Related Quality ◽  
Web Crawler ◽  
Real World Data ◽  
Patient Centered ◽  
Related Quality ◽  
Health Related ◽  
The Impact

BACKGROUND Monitoring social media has been shown to be a useful mean to capture patients’ opinions and feelings about medical issues, ranging from diseases to treatments. Health-related quality of life is a useful indicator of overall patients’ health that can be captured online. OBJECTIVE This study aims to describe a Social Media Listening system which is able to detect any impact of diseases or treatments on health-related quality of life as reported in social media and forum messages written by patients. METHODS Using a web crawler, 19 health-related forums in France were harvested and messages relating a patient’s experience with a disease or a treatment were specifically collected. The algorithm was based on the two clinically validated questionnaires SF-36 and EQ-5D. Models were trained using cross-validation (a machine learning technique which obtains the best combination between different data samples) and hyperparameter optimization. Over-sampling was used to increase the infrequent dimension: after annotation, SMOTE was used to balance the proportion of the dimension among messages. RESULTS The training set was composed of 1400 messages, randomly taken from a 20 000 batch of health-related messages coming from forums. The algorithm was able to detect a general impact on health-related quality of life (sensitivity of 0.83 and specificity of 0.74), a physical impact (0.67 and 0.76), a psychic impact (0.82 and 0.60), an activity-related impact (0.73 and 0.78), a relational impact (0.73 and 0.70) and a financial impact (0.79 and 0.74). CONCLUSIONS Real-time assessment of patients’ health-related quality of life through the use of Social Media Listening is useful to a patient-centered medical care. Social media as a source of Real World Data are a complementary point of vue to understand patients’ concerns, unmet needs and how diseases and treatments can be a burden in their daily lives. Trial Registration: Not applicable (not a trial)

Age-Related Issues That Affect CBT

2009 ◽  
pp. 41-62
Author(s):  
Dolores Gallagher-Thompson ◽  
Larry W. Thompson
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Older Individuals ◽  
Social Psychological ◽  
Health Changes ◽  
Age Related

Specific client groups often require specific procedural changes to ensure that the CBT model is applied optimally to facilitate improvement in the client’s level of adjustment and quality of life. This is particularly the case for older individuals, who often undergo numerous social, psychological, and physical health changes that are less evident in quantity and quality in other client groups seeking therapy. This chapter addresses age-related issues that the therapist should keep in mind when using CBT with older clients.

Spa-therapy can improve quality of life in chronic musculoskeletal disorder subjects: a narrative review

2020 ◽  
Vol 96 (2) ◽  
pp. 3-6
Author(s):  
M.C. Maccarone ◽  
G. Magro ◽  
U. Solimene ◽  
S. Masiero
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Randomized Clinical Trials ◽  
Thermal Environment ◽  
Narrative Review ◽  
Spa Therapy ◽  
Age Related ◽  
Therapy Interventions ◽  
The Impact

Chronic Musculoskeletal Disorders (MSDs) are age-related conditions, linked to functional impairment and decreased quality of life (QoL). As a result of the increased life expectancy in Europe, great attention has been focused on investigating the impact of these diseases on QoL. Thermal environment is a suitable place for providing interventions (mud therapy, bath, exercise, etc.) for chronic MSD patients. Our narrative review aims to assess if Spa therapy may improve QoL in patients with chronic MSDs. We searched randomized clinical trials and clinical trials screening PubMed and Google Scholar databases from 2016 up to March 2020. We included 14 trials testing Spa therapy interventions concerning osteoarthritis, rheumatoid arthritis, chronic shoulder pain and fibromyalgia. In conclusion, even though limitations must be considered, evidence shows that Spa therapy, especially in combination with rehabilitation approach, can significantly improve QoL of patients with chronic MSDs.

scholarly journals Quality of Life Among Black Prostate Cancer Survivors: An Integrative Review

2018 ◽  
Vol 12 (5) ◽  
pp. 1648-1664 ◽  
Author(s):  
Sabrina L. Dickey ◽  
Motolani E. Ogunsanya
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Cancer Survivors ◽  
Black Men ◽  
Well Being ◽  
The United States ◽  
Integrative Review ◽  
Dominant Factor ◽  
The Impact

The purpose of this integrative review was to explore the impact of prostate cancer (PCa) on the quality of life (QoL) and factors that contribute to the QoL for Black men with PCa. Prostate is recognized as the prevalent cancer among men in the United States. Compared to other men, Black men are diagnosed more frequently and with more advanced stages of PCa. Black men also experience disproportionately higher morbidity and mortality rates of PCa, among all racial and ethnic groups. The initial diagnosis of PCa is often associated with a barrage of concerns for one’s well-being including one’s QoL. As a result, men must contend with various psychosocial and physiological symptoms of PCa survivorship. Whittemore and Knafl’s integrative review method was utilized to examine empirical articles from the electronic databases of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, PubMed, Project Muse, and Google Scholar. The time frame for the literature was January 2005 to December 2016. A synthesis of the literature yielded 18 studies that met the inclusion criteria for the integrative review. A conceptual framework that examined QoL among cancer survivors identified four domains that measured the QoL among Black PCa survivors: (a) physical; (b) psychological; (c) social; and (d) spiritual well-being. Social well-being was the dominant factor among the studies in the review, followed by physical, psychological, and spiritual. Results indicate the need for additional studies that examine the factors impacting the QoL among Black PCa survivors, using a theoretical framework so as to develop culturally appropriate interventions for Black PCa survivors.

A Citizen's View of the Impact of Crime

1969 ◽  
Vol 15 (3) ◽  
pp. 323-332
Author(s):  
Julia D. Stuart
Keyword(s):  
Quality Of Life ◽  
Criminal Behavior ◽  
Fear Of Crime ◽  
The United States ◽  
Point Of View ◽  
Corrosive Effect ◽  
And Behavior ◽  
Direct Encounter ◽  
The Impact

What is the impact of crime on the average individual in this country? What is the impact of the fear of crime on the quality of life in the United States? These questions are addressed in this article not from the point of view of an expert, or of an official in the criminal justice system, or of a victim of crime, but from that of an average person whose experience has included no direct encounter with crime of any kind. Those who have been victims of crime and those affected even indirectly by criminal behavior will react, naturally, with predictable concern; crime also has discernible effects on the attitudes and behavior of people generally, and this impact in turn has a corrosive effect on the quality of life in America.

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