The Lone Caregiver

2020 ◽  
pp. 175-199
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Family Support ◽  
Information Seeking ◽  
Healthcare Providers ◽  
Self Care ◽  
Care Recipient ◽  
Support Network ◽  
Family Structures ◽  
Family Rules ◽  
Family Closeness ◽  
Significant Support

Lone caregivers derive from families with low conformity and conversation. Regular exchanges of interaction are not part of their family experience, nor are ritualized dates, behaviors, and times together. The members of this family group are stars in the same constellation but have no responsibility or time dedicated to one another. LOW/COLD conformity is demonstrated through a lack of consistency in family rules, sharing beliefs that demonstrate inequity, not recognizing protected family times/rituals, and avoiding the cultivation of family closeness. LOW/COLD communication is characterized by low expectation for agreement and assimilation in conversational topics and frequency of interaction. The dyadic dynamic with the care recipient may serve to be its own significant support for some Lone caregivers. These two collaborators, in some care situations, may share the burdens of decision-making, planning, and even care management. The absence of a family support network moves the Lone caregiver outside of family structures to develop resources and help in caregiving. Healthcare providers and system resources are especially vital in supporting care decisions, goals, and self-care. The Lone caregiver has high levels of facility with information seeking and care navigation/pursuit and presents to others as seeking of the most effective physical relief for the care recipient. This caregiver is particularly bound to the care recipient, vigilant about an unfolding disease path, and in high need of self-care resources and respite.

scholarly journals Type 2 Diabetes Patients' Perspectives, Experiences, and Barriers Toward Diabetes-Related Self-Care: A Qualitative Study From Pakistan

2020 ◽  
Vol 11 ◽  
Author(s):  
Allah Bukhsh ◽  
Bey-Hing Goh ◽  
Edward Zimbudzi ◽  
Clement Lo ◽  
Sophia Zoungas ◽  
...  
Keyword(s):  
Type 2 Diabetes ◽  
Family Support ◽  
Eating Habits ◽  
Healthcare Providers ◽  
Self Care ◽  
Weather Conditions ◽  
Self Monitoring ◽  
Care Practices

Objective: This study aimed to qualitatively explore perspectives, practices, and barriers to self-care practices (eating habits, physical activity, self-monitoring of blood glucose, and medicine intake behavior) in urban Pakistani adults with type 2 diabetes mellitus (T2DM).Methods: Pakistani adults with T2DM were recruited from the outpatient departments of two hospitals in Lahore. Semistructured interviews were conducted and audiorecorded until thematic saturation was reached. Two researchers thematically analyzed the data independently using NVivo® software with differences resolved by a third researcher.Results: Thirty-two Pakistani adults (aged 35–75 years, 62% female) participated in the study. Six themes were identified from qualitative analysis: role of family and friends, role of doctors and healthcare, patients' understanding about diabetes, complication of diabetes and other comorbidities, burden of self care, and life circumstances. A variable experience was observed with education and healthcare. Counseling by healthcare providers, family support, and fear of diabetes-associated complications are the key enablers that encourage study participants to adhere to diabetes-related self-care practices. Major barriers to self care are financial constraints, physical limitations, extreme weather conditions, social gatherings, loving food, forgetfulness, needle phobia, and a hectic job.Conclusion: Respondents identified many barriers to diabetes self care, particularly related to life situations and diabetes knowledge. Family support and education by healthcare providers were key influencers to self-care practices among Pakistani people with diabetes.

Social Media and the Transformation of Healthcare: A Viewpoint (Preprint)

2020 ◽  
Author(s):  
Ella Forgie ◽  
Hollis Lai ◽  
Bo Cao ◽  
Eleni Stroulia ◽  
Andrew James Greenshaw ◽  
...  
Keyword(s):  
Social Media ◽  
Health Information ◽  
Information Seeking ◽  
Virtual Communities ◽  
Community Support ◽  
Security And Privacy ◽  
Support Network ◽  
Full Potential ◽  
Physician Patient Relationship ◽  
Mediation Effects

UNSTRUCTURED As many as 80% of internet users seek health information online. The social determinants of health (SDoH) are intimately related to who has access to the internet and healthcare as a whole. Those who face more barriers to care are more likely to benefit from accessing health information online, granted the information they are retrieving is accurate. Virtual communities on social media platforms are particularly interesting as venues for seeking health information online because peers have been shown to influence health behaviour more than almost anything else. Thus, it is important to recognize the potential of social media to have positive mediation effects on health, so long as any negative mediation effects are reconcilable. As a positive mediator of health, social media can be used as a direct or indirect mode of communication between physicians and patients, a venue for health promotion and health information, and a community support network. False or misleading content, social contagion, confirmation bias, and security and privacy concerns must be mitigated in order to realize full potential of social media as a positive mediator of health. In any case, it is clear that the intersections between the SDoH, social media, and health are intimate, and they must be taken into consideration by physicians. Here, we argue that a paradigm shift in the physician-patient relationship is warranted, one where physicians: a) acknowledge the impacts of the SDoH on information-seeking behaviour, b) recognize the positive and negative roles of social media as a mediator of health through the lens of the SDoH, and c) use social media to catalyze positive changes in the standard of care.

Abstract 247: Pilot Study Examining Heart Failure Patient Internet Use and Adherence to a Web Based Portal Designed to Support Self-Care.

2013 ◽  
Vol 6 (suppl_1) ◽  
Author(s):  
Redah Z Mahmood ◽  
Judith Grossi ◽  
Todd M Koelling
Keyword(s):  
Computer Use ◽  
Healthcare Providers ◽  
Intervention Group ◽  
Self Care ◽  
Web Based ◽  
Face To Face ◽  
Clinical Events ◽  
Home Based ◽  
Care Information ◽  
Use Of Internet

Background: Experts agree that HF patients should practice appropriate self-care behaviors to minimize the risk of adverse clinical events, including early unplanned readmissions. We sought to understand patient perceptions and adherence to a web-based system designed to support self-care of HF patients. Methods: 100 HF patients were surveyed regarding their computer use and attitudes toward using an internet based web-portal (WP) to support self-care, provide patient education, and communicate with healthcare providers (HCP’s). We then consented 42 patients to participate in a 12 week trial of using the WP to track clinical parameters (daily weights, blood pressure, sodium/fluid intake, exercise), provide links for HF self-education, and update HCP’s on their progress. Patients received a face to face teaching session on accessing and using the WP. Results: The computer use survey (N=100) demonstrated that 72% of patients reported having a computer at home, 67% used email and 71% used the internet. In the WP intervention group (N=41) only 24 (58.5%) were able to successfully access the WP and enter data during the pilot (see table 1). Conclusions: Pilot data showed a significant positive correlation (see table 1) between patients indicating use of internet to access heaIth care information (HCI) and adherence with the WP. Despite strong interest to use a home based WP for self-care and communication with providers, we found that many hurdles prevented patients from using the WP. Internet based educational tools for HF patients may be desirable, but limitations in patients’ ability to access internet based programs may ultimately render the tools ineffective.

scholarly journals Online Health Information Seeking Among African American and Hispanic Men Living with Chronic Conditions: A Cross-Sectional Survey (Preprint)

2020 ◽  
Author(s):  
Ledric Sherman ◽  
Kirby Goidel ◽  
Caroline Bergeron ◽  
Matthew Lee Smith
Keyword(s):  
African American ◽  
Health Information ◽  
Information Seeking ◽  
Chronic Conditions ◽  
Healthcare Providers ◽  
Online Health Information ◽  
Health Information Seeking ◽  
Hispanic Men ◽  
Online Health Information Seeking ◽  
Minority Men

BACKGROUND Previous research has identified disparities in seeking and using online health information to inform health-related behaviors. Relatively few studies, however, have examined the correlates of online health information seeking and use at the intersection of race, gender, age, and the presence of chronic health condition. OBJECTIVE In this study, we identify factors associated with seeking and using online health information among a uniquely vulnerable and intersectional population, middle-aged and older (40+) African-American and Hispanic men living with one or more chronic conditions. METHODS Survey responses were collected from a purposive sample of African-American and Hispanic men using Qualtrics online survey management software. To qualify for inclusion in the study, respondents had to identify as African-American or Hispanic men, report having at least one chronic condition, and aged 40 years and older. RESULTS Online health information seeking among minority men is function of education, the presence of multiple chronic conditions, frustrations with healthcare providers, internet use, and the perceived reliability of online health information. Use of online health information to inform interactions with healthcare providers is more common for minority men who rate their health as relatively good, perceive barriers to care, use technology regularly, and take more daily medications. CONCLUSIONS Understanding the factors that influence minority males to seek online health information may help to improve care and treatment of chronic conditions. Minority males seek online health information as a substitute for routine care, but also to inform their discussions with healthcare providers. CLINICALTRIAL N/A

scholarly journals The Role Of Family Support And Self-Efficacy On Self-Care Behavior In The Elderly With Type 2 Diabetes

2021 ◽  
Vol 14 (02) ◽  
pp. 82-89
Author(s):  
Ratna Yunita Sari ◽  
Umdatus Soleha ◽  
Erika Chandra Dewi
Keyword(s):  
Diabetes Mellitus ◽  
Type 2 Diabetes ◽  
Type 2 Diabetes Mellitus ◽  
Family Support ◽  
Self Efficacy ◽  
Self Care ◽  
The Elderly ◽  
Rank Test ◽  
Care Behavior

  Introduction: Diabetes self-care is an effort to control type 2 diabetes mellitus. Family support and self-efficacy are needed for elderly people with type 2 diabetes mellitus to increase independence in managing their disease. This study aims to determine the relationship between family support and self-efficacy with self-care behavior in the elderly with type 2 diabetes mellitus at the Elderly Posyandu in Wadungasri Village. Methods: This study is a quantitative study with a correlational analytic research design using a cross-sectional approach. The population in this study was 132 elderly with type 2 diabetes mellitus using a probability sampling method with a technique used simple random sampling and obtained a sample of 100 elderly DM type 2. Results: The results showed that most of the elderly have family support and good self-efficacy. with less self-care behavior. The results of the analysis using the Spearman rank test showed that family support was associated with self-care for people with diabetes mellitus type 2 (p-value = 0.006, ɑ = 0.05). The results of the Spearman rank test analysis showed that self-efficacy was related to self-care for people with diabetes mellitus type 2 (p-value = 0.001, ɑ = 0.05). Conclusion: Family support and self-efficacy gave to elderly people with type 2 diabetes mellitus can influence health behavior patterns that will make self-care behavior well.

Role of Wearable Technology and Fitness Apps in Obesity and Diabetes

2021 ◽  
pp. 31-59
Author(s):  
Shariq I. Sherwani ◽  
Benjamin R. Bates
Keyword(s):  
Data Privacy ◽  
Healthcare Providers ◽  
The United States ◽  
Wearable Technology ◽  
Health Data ◽  
Support Network ◽  
Obesity Epidemic ◽  
Sensing Technology ◽  
Rapid Economic Growth ◽  
Obesity And Diabetes

Rapid economic growth, industrialization, mechanization, sedentary lifestyle, high calorie diets, and processed foods have led to increased incidence of obesity in the United States of America. Prominently affected by the obesity epidemic are the most vulnerable such as the rural poor and those who have less access to nutritious and healthy foods due to barriers such as socioeconomic, infrastructural, and organizational. Wearable technology (WT) and health fitness applications (apps) have the potential to address some of the health disparities associated with obesity. Monitoring health parameters through WT and Apps using remote sensing technology generates personal health data which can be captured, analyzed, and shared with healthcare providers and others in social support network. Because captured data include protected health information, and breaches can occur, the concerns about health data privacy, personal ownership, and portability are addressed in this chapter.

Caring for the Family Caregiver

2020 ◽  
pp. 200-214
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Health Literacy ◽  
Family Caregiver ◽  
Contextual Factors ◽  
Healthcare Providers ◽  
Self Care ◽  
Future Research ◽  
Disease Information ◽  
The Family ◽  
Caregiver Needs ◽  
Literacy Framework

There is little evidence for caregiver assessment and interventions based on unique social and contextual factors of caregiving. Current approaches to caring for the family caregiver involve a “one size fits all” approach where caregiver assessment may or may not occur, and there is no link between identification of caregiver needs and recommended resources. When caregiver assessment does occur, it does not involve unique caregiving characteristics that positively impact communication and health literacy. Caring for the Family Caregiver, a communication and health literacy framework, is introduced and consists of teaching healthcare providers to address caregiving types by finding disease information, assessing and integrating information, partnering with the caregiver, finding support, talking with the caregiver, and planning for caregiver self-care. Directions for future research are also summarized.

Fatigue

2019 ◽  
pp. 132-139
Author(s):  
Edith O’Neil-Page ◽  
Grace E. Dean ◽  
Paula R. Anderson
Keyword(s):  
End Of Life ◽  
Side Effect ◽  
Healthcare Providers ◽  
Self Care ◽  
Significant Others ◽  
Daily Activities ◽  
Course Of Disease ◽  
Cancer Related Fatigue ◽  
Care Requirements ◽  
The Impact

Individuals suffering from chronic or malignant disease may experience overwhelming and debilitating symptoms of extensive tiredness or sleepiness or an inability to meet daily self-care requirements and maintain personal interaction with significant others. However, they may be unable to verbalize the impact of fatigue on their daily activities. Fatigue is both personal and communal, affecting all aspects of life. Fatigue is often unrecognized by family and healthcare providers or is accepted as a “side effect” of disease and treatment. Cancer-related fatigue affects all aspects of life, at all ages, and may remain unacknowledged by healthcare providers. Yet with recognition and intervention, fatigue can be successfully managed throughout the course of disease, recovery, or through end of life.

scholarly journals How do the design features of health hackathons contribute to participatory medicine?

2017 ◽  
Vol 21 ◽  
Author(s):  
Karen Day ◽  
Gayl Humphrey ◽  
Sophie Cockcroft
Keyword(s):  
Data Storage ◽  
Success Factors ◽  
Healthcare Providers ◽  
Self Care ◽  
Personal Data ◽  
Participatory Development ◽  
Multiple Sources ◽  
Professional Perspective ◽  
Design Skills ◽  
Participatory Medicine

The Hackathon concept is attracting interest as a vehicle for participatory development in both Health and Information systems. Publically available datasets, cloud based data storage, and increasingly sophisticated analytical methods, combined with user friendly development tools for mobile devices are inspiring innovation in the participatory medicine space. This has the potential to disrupt traditional methods and deliver solutions more rapidly, and in a form more likely to meet requirements. In health applications this involves putting the patient and their supports at the centre of design. This work contributes to solving the challenges involved in bringing a diverse cohort of designers, developers, problem owners, healthcare providers, patients, and citizens together to solve user-driven self-care problems using technology. We use a descriptive case study approach focussing on two weekend-long hackathons dubbed “Health Hackathon: Solving Self-care”. We gather thick data from multiple sources according to the process defined by Geertz (1994) first, to provide a rich picture of the role of hackathons in participatory medicine and second, to contribute evidence to the practise of running a hackathon. Some key originalities of our work include seeking more candid responses via self-serve interviews. Through this, controversially, we noted a marked emphasis on the creative process over concerns for privacy and ethics around the personal data cloud created by hackathon products. We build on existing theories of participatory medicine and emerging methodologies for conducting hackathons to provide evidence of the efficacy of the hacking approach both in terms of outcome and team dynamics. Through interviews, observation, twitter feeds and a pre-survey, we identify a number of success factors including (1) group size, (2) maturity of the idea, (3) level of involvement of a mentor, and (4) involvement of students. In addition we identify five skills identified by successful health hackathon participants; knowledge, patient focussed skills, analytical skills, software design skills and professional perspective. In common with previous studies we find that there are considerable social benefits that accrue in running a hackathon. Participants meet new people and learn first-hand of the challenges and opportunities provided by the skill sets and work environments of others. This work builds on the existing body of research concerning hackathons and in particular work in the context of participatory medicine

Nonclinical Factors Associated with Treatment with Peritoneal Dialysis in Esrd Patients in Taiwan

2010 ◽  
Vol 30 (6) ◽  
pp. 638-643 ◽  
Author(s):  
Hsiu-Chen Huang ◽  
Jiun-Yi Wang ◽  
Chia-Chu Chang ◽  
Ping-Fang Chiu ◽  
Ming-Che Chiang ◽  
...  
Keyword(s):  
Peritoneal Dialysis ◽  
Family Support ◽  
Univariate Analysis ◽  
Healthcare Providers ◽  
Early Referral ◽  
Factors Associated ◽  
Stage Renal Disease ◽  
End Stage ◽  
To Receive ◽  
Esrd Patients

ObjectivesLess than 10% of end-stage renal disease (ESRD) patients in Taiwan receive peritoneal dialysis (PD), which reveals the situation of underutilization of PD. We thus aimed to investigate factors associated with treatment with PD in ESRD patients in Taiwan.PatientsPatients that were 18 years of age or older and had been on dialysis for at least 3 months since 2001 were recruited and interviewed with a structured questionnaire.Results98 hemodialysis (HD) and 102 PD patients were recruited. In univariate analysis, age, sex, level of education, employment status, marital status, traffic time, family support, patient cognition, and receptivity were correlated with treatment with PD. Multivariate analysis showed that patients that were not married ( p = 0.006), that spent more time traveling to the dialysis clinic ( p = 0.006), that were not emergent at the start of dialysis ( p = 0.003), and that had better family support ( p = 0.045), a higher cognition of dialysis ( p = 0.034), and stronger receptivity to dialysis ( p < 0.001) were more likely to receive PD.ConclusionsWe recommend patients follow the standard process to obtain more exhaustive information, consultation, and early referral. In addition, we suggest healthcare providers remind patients to take into account such nonclinical factors as family support and patient receptivity when they choose their dialysis modality.

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