Tailoring Consumer Resources to Enhance Self-Care in Chronic Heart Failure

Background Chronic heart failure (CHF) is associated with high hospitalisation and mortality rates and debilitating symptoms. In an effort to reduce hospitalisations and improve symptoms individuals must be supported in managing their condition. Patients who can effectively self-manage their symptoms through lifestyle modification and adherence to complex medication regimens will experience less hospitalisations and other adverse events. Aim The purpose of this paper is to explain how providing evidence-based information, using patient education resources, can support self-care. Discussion Self-care relates to the activities that individuals engage in relation to health seeking behaviours. Supporting self-care practices through tailored and relevant information can provide patients with resources and advice on strategies to manage their condition. Evidence-based approaches to improve adherence to self-care practices in patients with heart failure are not often reported. Low health literacy can result in poor understanding of the information about CHF and is related to adverse health outcomes. Also a lack of knowledge can lead to non-adherence with self-care practices such as following fluid restriction, low sodium diet and daily weighing routines. However these issues need to be addressed to improve self-management skills. Outcome Recently the Heart Foundation CHF consumer resource was updated based on evidence-based national clinical guidelines. The aim of this resource is to help consumers improve understanding of the disease, reduce uncertainty and anxiety about what to do when symptoms appear, encourage discussions with local doctors, and build confidence in self-care management. Conclusion Evidence-based CHF patient education resources promote self-care practices and early detection of symptom change that may reduce hospitalisations and improve the quality of life for people with CHF.

Improving self care of patients with chronic disease using online personal health record

BACKGROUND: Effective management of chronic diseases such as prostate cancer is important. Research suggests a tendency to use self-care treatment options such as over-the-counter (OTC) complementary medications among prostate cancer patients. The current trend in patient-driven recording of health data in an online Personal Health Record (PHR) presents an opportunity to develop new data-driven approaches for improving prostate cancer patient care. However, the ability of current online solutions to share patients' data for better decision support is limited. An informatics approach may improve online sharing of self-care interventions among these patients. It can also provide better evidence to support decisions made during their self-managed care. AIMS: To identify requirements for an online system and describe a new case-based reasoning (CBR) method for improving self-care of advanced prostate cancer patients in an online PHR environment. METHOD: A non-identifying online survey was conducted to understand self-care patterns among prostate cancer patients and to identify requirements for an online information system. The pilot study was carried out between August 2010 and December 2010. A case-base of 52 patients was developed. RESULTS: The data analysis showed self-care patterns among the prostate cancer patients. Selenium (55%) was the common complementary supplement used by the patients. Paracetamol (about 45%) was the commonly used OTC by the patients. CONCLUSION: The results of this study specified requirements for an online case-based reasoning information system. The outcomes of this study are being incorporated in design of the proposed Artificial Intelligence (Al) driven patient journey browser system. A basic version of the proposed system is currently being considered for implementation.

Periodontal and dental health and oral self-care among adults with diabetes mellitus.

ABSTRACT Bakhshandeh, Soheila. Periodontal and dental health and oral self-care among adults with diabetes mellitus. Department of Oral Public Health, Institute of Dentistry, Faculty of Medicine, University of Helsinki, Helsinki, Finland. 2011. 49 pp. ISBN 978-952-10-7193-5(paperback). The aim of the present study was to assess oral health and treatment needs among Iranian adults with diabetes according to socio-demographic status, oral hygiene, diabetes related factors, and to investigate the relation between these determinants and oral health. Moreover, the effect of an educational oral health promotion intervention on their oral health and periodontal treatment needs was studied. The target population comprised adults with diabetes in Tehran, Iran. 299 dentate patients with diabetes, who were regular attendants to a diabetic clinic, were selected as the study subjects. Data collection was performed through a clinical dental examination and self-administered structured questionnaire. The questionnaire covered information of the subject s social background, medical history, oral health behaviour and smoking. The clinical dental examinations covered the registration of caries experience (DMFT), community periodontal index (CPI) and plaque index (PI). The intervention provided the adults with diabetes dental health education through a booklet. Reduction in periodontal treatment needs one year after the baseline examination was used as the main outcome. A high prevalence of periodontal pockets among the study population was found; 52% of the participants had periodontal pockets with a pocket depth of 4 to 5 mm and 35% had periodontal pockets with pocket depth of 6 mm or more. The mean of the DMFT index was 12.9 (SD=6.1), being dominated by filled teeth (mean 6.5) and missing teeth (mean 5.0). Oral self-care among adults with diabetes was inadequate and poor oral hygiene was observed in more than 80% of the subjects. The educational oral health promotion decreased periodontal treatment needs more in the study groups than in the control group. The poor periodontal health, poor oral hygiene and insufficient oral self-care observed in this study call for oral health promotion among adult with diabetes. An educational intervention showed that it is possible to promote oral health behaviour and to reduce periodontal treatment needs among adults with diabetes. The simplicity of the model used in this study allows it to be integrated to diabetes programmes in particular in countries with a developing health care system.

Self-reported health needs and use of primary health care services by adolescents enrolled in post-mandatory schools or vocational training programmes in Switzerland.

BACKGROUND: The second Swiss Multicenter Adolescent Survey on Health (SMASH02) was conducted among a representative sample (n = 7428) of students and apprentices aged 16 to 20 from the three language areas of Switzerland during the year 2002. This paper reports on health needs expressed by adolescents and their use of health care services over the 12 months preceding the survey. METHODS: Nineteen cantons representing 80% of the resident population agreed to participate. A complex iterative random cluster sample of 600 classes was drawn with classes as primary sampling unit. The participation rate was 97.7% for the classes and 99.8% for the youths in attendance. The self-administered questionnaire included 565 items. The median rate of item non-response was 1.8%. Ethical and legal requirements applying to surveys of adolescent populations were respected. RESULTS: Overall more than 90% of adolescents felt in good to excellent health. Suffering often or very often from different physical complaints or pain was also reported such as headache (boys: 15.9%, girls: 37.4%), stomach-ache (boys: 9.7%, girls: 30.0%), joint pain (boys: 24.7%, girls: 29.5%) or back pain (boys: 24.3%, girls: 34.7%). Many adolescents reported a need for help on psychosocial and lifestyle issues, such as stress (boys: 28.5%, girls: 47.7%) or depression (boys: 18.9%, girls: 34.4%). Although about 75% of adolescents reported having consulted a general practitioner and about one-third having seen another specialist, reported reasons for visits do not correspond to the expressed needs. Less than 10% of adolescents had visited a psychiatrist, a family planning centre or a social worker. CONCLUSIONS: The reported rates of health services utilisation by adolescents does not match the substantial reported needs for help in various areas. This may indicate that the corresponding problems are not adequately detected and/or addressed by professionals from the health and social sectors.

A Mobile Feedback System for Integrated E-health Platforms to improve Self-Care and Compliance of Diabetes Mellitus Patients

Exploiting the full potential of telemedical systems means using platform based solutions: data are recovered from biomedical sensors, hospital information systems, care-givers, as well as patients themselves, and are processed and redistributed in an either centralized or, more probably, decentralized way. The integration of all these different devices, and interfaces, as well as the automated analysis and representation of all the pieces of information are current key challenges in telemedicine. Mobile phone technology has just begun to offer great opportunities of using this diverse information for guiding, warning, and educating patients, thus increasing their autonomy and adherence to their prescriptions. However, most of these existing mobile solutions are not based on platform systems and therefore represent limited, isolated applications. This article depicts how telemedical systems, based on integrated health data platforms, can maximize prescription adherence in chronic patients through mobile feedback. The application described here has been developed in an EU-funded R&D project called METABO, dedicated to patients with type 1 or type 2 Diabetes Mellitus

Diabetes Self-management Behaviors, Medical Care, Glycemic Control, and Self-rated Health in US Men by Race/Ethnicity

Men, particularly minorities, have higher rates of diabetes as compared with their counterparts. Ongoing diabetes self-management education and support by specialists are essential components to prevent the risk of complications such as kidney disease, cardiovascular diseases, and neurological impairments. Diabetes self-management behaviors, in particular, as diet and physical activity, have been associated with glycemic control in the literature. Recommended medical care for diabetes may differ by race/ethnicity. This study examined data from the National Health and Nutrition Examination Surveys, 2007 to 2010 for men with diabetes (N = 646) from four racial/ethnic groups: Mexican Americans, other Hispanics, non-Hispanic Blacks, and non-Hispanic Whites. Men with adequate dietary fiber intake had higher odds of glycemic control (odds ratio = 4.31, confidence interval [1.82, 10.20]), independent of race/ethnicity. There were racial/ethnic differences in reporting seeing a diabetes specialist. Non-Hispanic Blacks had the highest odds of reporting ever seeing a diabetes specialist (84.9%) followed by White non-Hispanics (74.7%), whereas Hispanics reported the lowest proportions (55.2% Mexican Americans and 62.1% other Hispanics). Men seeing a diabetes specialist had the lowest odds of glycemic control (odds ratio = 0.54, confidence interval [0.30, 0.96]). The results of this study suggest that diabetes education counseling may be selectively given to patients who are not in glycemic control. These findings indicate the need for examining referral systems and quality of diabetes care. Future studies should assess the effectiveness of patient-centered medical care provided by a diabetes specialist with consideration of sociodemographics, in particular, race/ethnicity and gender.

An investigation of the relationships among self-care behaviors, health beliefs, and metabolic control in the non-insulin-dependent diabetic adult

Self-care and health beliefs have been found to be important concepts in the management of chronic diseases such as diabetes mellitus. Poor metabolic control has been associated with a higher incidence of complications in diabetic patients. This study sought to explore any relationships among perceptions of self-care behaviors, health beliefs and metabolic control. The sample consisted of 52 outpatients with non-insulin-dependent diabetes from a large teaching medical center. Interviews were done to obtain the patients' perceptions of their self-care behaviors, and their health beliefs concerning diabetes. Results of glycosylated hemoglobin and/or serum glucose levels were obtained from the medical records. Data were analyzed using Cochran-Mantel-Haenzel statistics, and Pearson's r. Results indicated no significant relationships among perceptions of self-care behaviors, health beliefs and metabolic control. Ethnicity, education and gender were found to be significantly associated with self-care behaviors and health beliefs.

Is change in global self-rated health associated with change in affiliation with a primary care provider? Findings from a longitudinal study from New Zealand

To investigate the association of self-rated health and affiliation with a primary care provider (PCP) in New Zealand.
Methods

We used data from a New Zealand panel study of 22,000 adults. The main exposure was self-rated health, and the main outcome measure was affiliation with a PCP. Fixed effects conditional logistic models were used to control for observed time-varying and unobserved time-invariant confounding.
Results

In any given wave, the odds of being affiliated with a PCP were higher for those in good and fair/poor health relative to those in excellent health. While affiliation for Europeans increased as reported health declined, the odds of being affiliated were lower for Māori respondents reporting very good or good health relative to those in excellent health. No significant differences in the association by age or gender were observed.
Conclusions

Our data support the hypothesis that those in poorer health are more likely to be affiliated with a PCP. Variations in affiliation for Māori could arise for several reasons, including differences in care-seeking behaviour and perceived need of care. It may also mean that the message about the benefits of primary health care is not getting through equally to all population groups.

Self-efficacy, outcome expectations and self-care behaviour in people with type 2 diabetes in Taiwan

Aims. To explore differences in self-care behaviour according to demographic and illness characteristics; and relationships among self-care behaviour and demographic and illness characteristics, efficacy expectations and outcome expectations of people with type 2 diabetes in Taiwan. Background. Most people with diabetes do not control their disease appropriately in Taiwan. Enhanced self-efficacy towards managing diseases can be an effective way of improving disease control as proposed by the self-efficacy model which provides a useful framework for understanding adherence to self-care behaviours. Design and methods. The sample comprised 145 patients with type 2 diabetes aged 30 years or more from diabetes outpatient clinics in Taipei. Data were collected using a self-administered questionnaire for this study. One-way anova, t-tests, Pearson product moment correlation and hierarchical regression were analysed for the study. Results. Significant differences were found: between self-care behaviour and complications (t = −2·52, p < 0·01) and patient education (t = −1·96, p < 0·05). Self-care behaviour was significantly and positively correlated with duration of diabetes (r = 0·36, p < 0·01), efficacy expectations (r = 0·54, p < 0·01) and outcome expectations (r = 0·44, p < 0·01). A total of 39·1% of variance in self-care behaviour can be explained by duration of diabetes, efficacy expectations and outcome expectations. Conclusions. Findings support the use of the self-efficacy model as a framework for understanding adherence to self-care behaviour. Relevance to clinical practice. Using self-efficacy theory when designing patient education interventions for people with type 2 diabetes will enhance self-management routines and assist in reducing major complications in the future.

Using participatory action research for heart self care amongst indigenous patients

This paper describes the initial phases of the Fluid Watchers Pacific Rim project: a participatory action research project that involves developing and trialling an iPad app to provide monitoring and self-care for Indigenous Australians with heart failure. The development phase involved working with health experts, an IT team and Indigenous heart-failure patients through three cycles of development and critical reflection. This was followed by a small pilot study to examine the app’s effectiveness. In this paper, the researchers explain why IT-supported health education can be successful in decreasing re-hospitalisation and improving self-management skills. They describe the steps they took to ensure community participation and ownership of the project and present the findings of their pilot study. This pilot project suggests that an iPad app may be a practical and successful way to provide health-care support for Indigenous Australian heart-failure patients.

Development and feasibility testing of an education program to improve knowledge and self-care among Aboriginal and Torres Strait Islander patients with heart failure

Background/Aim There is a 70% higher age-adjusted incidence of heart failure (HF) amongst Aboriginal and Torres Strait Islander people, three times more hospitalisations and twice as many deaths than non-Aboriginal people. There is a need to develop holistic yet individualised approaches in accord with the values of Aboriginal community healthcare to support patient education and self-care. The aim of this study was to re-design an existing HF educational resource (Fluid Watchers-Pacific Rim©) to be culturally safe for Aboriginal and Torres Strait Islander peoples, working in collaboration with the local community, and to conduct feasibility testing. Methods This study was conducted in two phases and utilised a mixed methods approach (qualitative and quantitative). Phase 1 of this study used action research methods to develop a culturally safe electronic resource to be provided to Aboriginal HF patients via a tablet computer. A HF expert panel adapted the existing resource to ensure it was evidence-based and contained appropriate language and images that reflects Aboriginal culture. A stakeholder group (which included Aboriginal workers and HF patients, as well as researchers and clinicians) then reviewed the resources and changes were made accordingly. In Phase 2, the new resource was tested on a sample of Aboriginal HF patients to assess feasibility and acceptability. Patient knowledge, satisfaction and self-care behaviours were measured using a before and after design with validated questionnaires. As this was a pilot test to determine feasibility, no statistical comparisons were made. Results - Phase 1: Throughout the process of resource development, two main themes emerged from the stakeholder consultation. These were the importance of identity, meaning that it was important to ensure that the resource accurately reflected the local community, with the appropriate clothing, skin tone and voice. The resource was adapted to reflect this and of the local community voiced the recordings for the resource. The other theme was comprehension; images were important and all text was converted to the first person and used plain language. - Phase 2: Five Aboriginal participants, mean age 61.6 ± 10.0 years, with NYHA Class III and IV heart failure were enrolled. Participants reported a high level of satisfaction with the resource (83.0%). HF knowledge (percentage of correct responses) increased from 48.0 ± 6.7% to 58.0 ± 9.7%, a 20.8% increase and results of the self-care index indicated that the biggest change was in patient confidence for self-care with a 95% increase in confidence score (46.7 ± 16.0 to 91.1 ± 11.5). Changes in management and maintenance scores varied between9275 patients. Conclusion By working in collaboration with HF experts, Aboriginal researchers and patients, a culturally safe HF resource has been developed for Aboriginal and Torres Strait Islander patients. Engaging Aboriginal researchers, capacity-building, and being responsive to local systems and structures enabled this pilot study to be successfully completed with the Aboriginal community and positive participant feedback demonstrated that the methodology used in this study was appropriate and acceptable; participants were able to engage with willingness and confidence.

Cancer related fatigue and self-care while undergoing chemotherapy: patients' perspectives

Background: Cancer related fatigue (CRF) is considered the most severe, debilitating and under-managed symptom of cancer. Patients receiving chemotherapy experience high levels of CRF which profoundly impacts on their lives. Aim: 1). To explore and measure CRF and determine the most effective self-care strategies used to combat CRF in a cohort of patients with a diagnosis of cancer (breast cancer, colorectal cancer, Hodgkin’s and Non-Hodgkin’s lymphoma) 2). To explore self-care agency and its relationship to CRF. Method: A mixed methods study which incorporated a descriptive, comparative, correlational design and qualitative descriptions of patients’ (n=362) experiences gleaned through open ended questions and use of a diary. The study utilised The Revised Pipers Fatigue Scale, the Appraisal of Self-Care Agency and a researcher developed Fatigue Visual Analogue Scale, Fatigue Self-Care Survey, and Diary. Findings: Having breast cancer, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma; using the strategies of counselling, taking a 20–30 minute nap, resting and sleeping, self-monitoring and complementary therapies were all associated with increased odds of developing fatigue. Increased self-care agency; being in the divorced / separated cohort; being widowed; increased length of time since commencement of chemotherapy; engagement in exercise, and socializing were associated with a reduced risk of developing fatigue. Females had 20% higher fatigue levels than males (p=<.001). Receiving support was the strategy used most frequently and rated most effective. Fatigue was very problematic and distressing, four key qualitative categories emerged: the behavioural impact, affective impact, the sensory impact, and the cognitive impact. Keeping a diary was considered very beneficial and cathartic. Conclusions: Fatigue severely impacted on the daily lives of patients undergoing chemotherapy. There are a range of self-care strategies that patients should be encouraged to use e.g. exercise, socializing, and enhancement of psychological well-being. The enhancement of self-care agency and use of diaries should also be considered.

Torrenting values, feelings and thoughts : cyber nursing and virtual self care in a breast augmentation forum

Earlier research shows that breast augmentation is positively correlated with positive psychological states. The aim of this study was to explore the shared values, feelings, and thoughts within the culture of breast enlargement among women visiting Internet-based forums when considering and/or undergoing esthetic plastic surgery. The study used a netnographic method for gathering and analyzing data. The findings show that the women used the Internet forum to provide emotional support to other women. Through electronic postings, they cared for and nursed each others’ anxiety and feelings throughout the whole process. Apart from the process, another central issue was that the women's relationships were frequently discussed; specifically their relationship to themselves, their environment, and with the surgeons. The findings suggest that Internet forums represent a channel through which posters can share values, feelings, and thoughts from the position of an agent of action as well as from a position as the object of action. These dual positions and the medium endow the women with a virtual nursing competence that would otherwise be unavailable. By introducing the concept of torrenting as a means of sharing important self-care information, the authors provide a concept that can be further explored in relation to post modern self-care strategies within contemporary nursing theories and practice.