Care Empowerment Research Articles

Family Caregiving Amidst Age‐Associated Cognitive Changes: Implications for Practice and Future Generations

AbstractAs the number of older adults has increased, so has the prevalence of age‐associated needs, including cognitive changes. Correspondingly, more than 43 million people provide care for an older family member whose needs range from basic household maintenance to 24‐hour care. Those who serve aging families exclusively or work with multigenerational families face the challenges of inaccurate and/or incomplete information, confusing and unreachable services, and uncertainty about managing stress and ways to foster resilience within multigenerational family systems. Thus, the purpose of this article is to highlight the prevalence of age‐associated cognitive changes and how they relate to the short‐ and long‐term family resilience processes. More specifically, this article is directed to orient practitioners to the critical roles caregivers play, and individual, relational, and sociological dynamics of cognition, care, and resilience are discussed. The authors provide an overview of assumptions and outcomes related to caregiving, as well as considerations for care recipients, including personhood and empowerment. Finally, because practitioners become a key ingredient in navigating the normative and nonnormative processes of aging, the authors provide a checklist of relational processes to focus on when working with aging families, along with specific recommendations for practice for family life educators and marriage and family therapists.

The Perspectives of Patients on Health-Care for Co-Morbid Diabetes and Chronic Kidney Disease: A Qualitative Study.

BackgroundMulti-morbidity due to diabetes and chronic kidney disease (CKD) remains challenging for current health-systems, which focus on single diseases. As a first step toward health-care improvement, we explored the perspectives of patients and their carers on factors influencing the health-care of those with co-morbid diabetes and CKD.MethodsIn this qualitative study participants with co-morbid diabetes and CKD were purposively recruited using maximal variation sampling from 4 major tertiary health-services from 2 of Australia’s largest cities. Separate focus groups were conducted for patients with CKD stages 3, 4 and 5. Findings were triangulated with semi-structured interviews of carers of patients. Discussions were transcribed verbatim and thematically analysed.ResultsTwelve focus groups with 58 participants and 8 semi-structured interviews of carers were conducted. Factors influencing health-care of co-morbid diabetes and CKD grouped into patient and health service level factors. Key patient level factors identified were patient self-management, socio-economic situation, and adverse experiences related to co-morbid diabetes and CKD and its treatment. Key health service level factors were prevention and awareness of co-morbid diabetes and CKD, poor continuity and coordination of care, patient and carer empowerment, access and poor recognition of psychological co-morbidity. Health-service level factors varied according to CKD stage with poor continuity and coordination of care and patient and carer empowerment emphasized by participants with CKD stage 4 and 5, and access and poor recognition of psychological co-morbidity emphasised by participants with CKD stage 5 and carers.ConclusionsAccording to patients and their carers the health-care of co-morbid diabetes and CKD may be improved via a preventive, patient-centred health-care model which promotes self-management and that has good access, continuity and coordination of care and identifies and manages psychological morbidity.

Empowerment Through Energy? Impact of Electricity on Care Work Practices and Gender Relations

Electricity provides a range of desirable services such as the electric light and the use of mobile phones and is regarded as a conditional factor for economic growth. Gender equality and women's empowerment are also promoted as a key to development on the international agenda. However, relatively little is known about how the advent of electricity in new contexts affects gender relations. The present analysis of electricity's impact on gender relations engages with the concepts of care work and empowerment. Based on two ethnographic case studies in rural communities in Uttar Pradesh, India, and Bamiyan, Afghanistan, we examine how and to what extent the introduction of electricity affected women's care work practices and empowerment – and potentially transformed gender relations. We also draw on our own empirical material from other parts of India (West Bengal and Jharkhand). We find that electricity affected everyday life in terms of providing important resources and enhancing women's opportunities to perform their expected role as care workers more efficiently and in a qualitatively better way. The women appreciated this positive effect of electricity in their everyday lives. However, we argue that in India, electricity at the same time reinforced structures of gender inequality such as patriarchy and dowry practices, and we trace this tendency to the conceptualisation of women as care workers in combination with conventional, gender ‘neutral’ electricity interventions. In contrast, there are signs that women's status increased in the Afghanistan case, which we link to the unusual inclusion of women engineers in the electricity supply.

Assessment of Quality of Life, Family Function and Family Empowerment for Families Who Provide Home Care for a Child with Severe Motor and Intellectual Disabilities in Japan

Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these children. A top priority is to understand quality of life (QoL), family function, and family empowerment to effectively support these families. We aimed to assess current living situations of families with a SMID child, and to reveal the relationships between QoL, family function, and family empowerment. Methods: Sixty-five family members from 34 families with a SMID child participated in this study. We assessed 5 parameters using the Japanese versions of the following instruments: World Health Organization Quality of Life 26 (WHOQOL26), Kinder Lebensqualitats Fragebogen (KINDL), Family Assessment Device (FAD), Family Adaptability and Cohesion Evaluation Scale KG-4 (FACESKG-4), and Family Empowerment Scale (FES). Correlation and multiple regression analyses were conducted; QoL score was the objective variable. Results: Participants included 54 parents (34 mothers, 20 fathers) and 11 siblings. The mean age of SMID children was 10.4 ± 5.03 years. Twenty-two children needed multiple types of medical care. The mean age of parents and siblings was 41.5 ± 6.16 years and 15.5 ± 2.35 years, respectively. The mean QoL score (3.28 ± 0.5) was similar to the Japanese average. The mean KINDL score (77.2 ± 12.1) was higher than those of previous studies. The mean FAD score was 1.97 ± 0.32. For FACEKG-4, the score of adaptability was correlated with WHOQOL score (r = 0.459, p < 0.05). The mean score of FES was 113.6 ± 14. As the result of multiple regression analysis, lower family FAD scores ([sb] = ?0.61, p < 0.01) indicated higher family function and greater age of participants (sb = 0.495, p < 0.01) was correlated with higher WHOQOL scores (F = 15.208, p < 0.01). Conclusions: Our results indicated that the individual QoL depended on the age of participants (equals the years of experience caring for a SMID child) and the recognition of family function as a whole. Thus, to improve family members’ QoL, we should focus on individuals and also approach the family as a whole.

Mental health, mental illness, and human rights in India and elsewhere: What are we aiming for?

The Mental Health Care Bill 2013 was introduced to the Rajya Sabha (India's upper house of parliament) in August 2013 and following 134 official amendments, passed in August 2016. Properly implemented, mental health legislation such as this plays a key role in protecting the rights of the mentally ill, ensuring access to care, and promoting social justice for the mentally ill, their families and carers. In this context, the 2006 United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) presents a real opportunity to improve the position of people with disabilities and those disabled by long-term mental illness. The CRPD also presents many challenges to mental health legislators and service-providers, especially in relation to involuntary care, mental capacity, and substitute decision-making. Nevertheless, the CRPD has still generated strong incentive for reform and is an opportunity that should not be missed. Legislation along the lines of India's 2013 Bill offers much that is positive and progressive in terms of standards of care, revised processes for involuntary admission, and enhanced governance throughout mental health services. In this way, this kind of legislation, although imperfect in certain respects, promotes the principles of the CRPD (as outlined in the preamble to India's 2013 Bill). It is important that such initiatives focus not only on the right to liberty but also on rights to treatment, social care, social inclusion, and political empowerment of the mentally ill. Globally, the mentally ill have been neglected for far, far too long. It is time to fix this.

Video-otoscopy in children and patient-centered care: A randomized, controlled study

ObjectivesMedicine today is moving towards patient centered care and patient empowerment. This enhances patient autonomy, allows shared decision making and increases satisfaction. Current technology enables the caregiver to share visual data with the patients, making them more active participants in a medical encounter. It has been shown that higher patient satisfaction rate has a positive effect on outcome and patient compliance. Otoscopic examination is one of the most common procedures performed in the pediatric population. Video-otoscopy uses endoscopic technology to project the image of the tympanic membrane onto a monitor visible to both the physician and the patient. The objective of this study is to assess whether video-otoscopy used in a pediatric emergency department can improve patient-centeredness and parental satisfaction with treatment. MethodsA randomized, controlled study comparing video-otoscopy with conventional otoscopy was performed. Patients were randomized into 2 groups. In one, ear examination was performed by video-otoscopy and in the other by conventional otoscopy. Following examination, parents in both groups were asked to fill a questionnaire regarding their satisfaction with the otoscopic examination and the patient-centeredness of the encounter. Results60 children were recruited and were randomized into two groups: 30 in the video-otoscopy group and 30 in the conventional otoscopy group. Parental satisfaction was significantly higher in the video-otoscopy group. The level of patient-centeredness was significantly higher in the video-otoscopy group. There was a positive correlation between patient-centeredness and parental satisfaction in both groups, with a significantly higher correlation in the video-otoscopy group. ConclusionsVideo-otoscopy was found to encourage patient-centered care and increase parental satisfaction with otoscopy. There is a significantly higher positive correlation between patient-centeredness and parental satisfaction when video-otoscopy is used.

Clients and Veterinarians as Partners in Problem Solving during Cancer Management: Implications for Veterinary Education.

This research explores client satisfaction with veterinarian interactions and support during cancer management. Ninety-four members of the online Pet Cancer Support group completed the electronic communication and support questionnaire. Results show that 77% of respondents (n=72) are satisfied with their veterinarian; 71% (n=67) are satisfied with the information their veterinarian provides about treatment options; and 70% percent (n=66) are satisfied with the support they receive from their veterinarian. Strong, positive correlations exist between level of satisfaction and information about treatment options (rs=.795, n=91, p<.001) and between level of satisfaction and support received from the veterinarian (rs=.759, n=90, p<.001). Problem-focused informational support and tangible support dominated clients' descriptions of support and affected their support satisfaction. Emotion-focused support was not as important, and in some cases was not expected of the veterinarian. Results suggested that clients' overall satisfaction with their veterinarian is related to their satisfaction with information about treatment options and satisfaction with the support the veterinarian provides. By providing problem-focused support, veterinarians can empower clients and enhance their sense of control, thus positively affecting satisfaction and the likelihood of a long-lasting relationship. Taken together, these findings have implications for our understanding of veterinarian-client communication related to relationship-centered care and client empowerment, as well as implications for veterinary medical education and communication curricula.

Food Security and Indian Agriculture

The food insecurity is a gigantic problem in front of the world population. In spite of the reaching horizon of economic development, people are struggling for the survival of their daily life as at least 25,000 die people every day due lack of proper diets. Nearly 852 million people in the world are victims of vicious cycle of maturation and chronic hunger. It was a period of last 30 years when 70 per cent enhance was in the world population, world agriculture produced 17 per cent more calories per person today. The present study is an attempt to analyse the current agricultural scenario and global food insecurity and to identify the discrepancies in the system, find the ways to remove the anomalies and to make the mechanism more effective for achieving food security to all. India ranks 94th in the Global Hunger Index of 119 countries and there is paradoxical situation in endemic mass-hunger coexisting with the mounting food grain stocks. So, effective measures are needed to achieve the goal of hunger free, food and nutritional secure India. Food security act is an opportunity and this can be regarded as appreciable step in India. But the framework of poverty estimation and identification is complex and impractical. Proper distribution and procurement are the issues in the way of implementation of the act. The need of the time is simplified, transparent and equitable framework for practicability of the act. Community measures like education, health facilities, children care and women empowerment are some issues which can improve the nutritional status at household level because in India women and children are mostly affected by food insecurity. In country like India where barriers like caste, religion and socioeconomic culture are dominant, community measures can play important role in solving the problem of food security at micro level.

A pilot study to evaluate the magnitude of association of the use of electronic personal health records with patient activation and empowerment in HIV-infected veterans.

The HITECH Act signed into law in 2009 requires hospitals to provide patients with electronic access to their health information through an electronic personal health record (ePHR) in order to receive Medicare/Medicaid incentive payments. Little is known about who uses these systems or the impact these systems will have on patient outcomes in HIV care. The health care empowerment model provides rationale for the hypothesis that knowledge from an electronic personal health record can lead to greater patient empowerment resulting in improved outcomes. The objective was to determine the patient characteristics and patient activation, empowerment, satisfaction, knowledge of their CD4, Viral Loads, and antiretroviral medication, and medication adherence outcomes associated with electronic personal health record use in Veterans living with HIV at the San Francisco VA Medical Center. The participants included HIV-Infected Veterans receiving care in a low volume HIV-clinic at the San Francisco VA Medical Center, divided into two groups of users and non-users of electronic personal health records. The research was conducted using in-person surveys either online or on paper and data abstraction from medical records for current anti-retroviral therapy (ART), CD4 count, and plasma HIV-1 viral load. The measures included the Patient Activation Measure, Health Care Empowerment Inventory, ART adherence, provider satisfaction, current CD4 count, current plasma viral load, knowledge of current ART, knowledge of CD4 counts, and knowledge of viral load. In all, 40 participants were recruited. The use of electronic personal health records was associated with significantly higher levels of patient activation and levels of patient satisfaction for getting timely appointments, care, and information. ePHR was also associated with greater proportions of undetectable plasma HIV-1 viral loads, of knowledge of current CD4 count, and of knowledge of current viral load. The two groups differed by race and computer access. There was no difference in the current CD4, provider satisfaction, Health Care Empowerment Inventory score, satisfaction with provider-patient communication, satisfaction with courteous and helpful staff, knowledge of ART, or ART adherence. The use of electronic personal health records is associated with positive clinical and behavioral characteristics. The use of these systems may play a role in improving the health of people with HIV. Larger studies are needed to further evaluate these associations.

Interpreter-mediated dentistry

The global movements of healthcare professionals and patient populations have increased the complexities of medical interactions at the point of service. This study examines interpreter mediated talk in cross-cultural general dentistry in Hong Kong where assisting para-professionals, in this case bilingual or multilingual Dental Surgery Assistants (DSAs), perform the dual capabilities of clinical assistant and interpreter. An initial language use survey was conducted with Polyclinic DSAs (n = 41) using a logbook approach to provide self-report data on language use in clinics. Frequencies of mean scores using a 10-point visual analogue scale (VAS) indicated that the majority of DSAs spoke mainly Cantonese in clinics and interpreted for postgraduates and professors. Conversation Analysis (CA) examined recipient design across a corpus (n = 23) of video-recorded review consultations between non-Cantonese speaking expatriate dentists and their Cantonese L1 patients. Three patterns of mediated interpreting indicated were: dentist designated expansions; dentist initiated interpretations; and assistant initiated interpretations to both the dentist and patient. The third, rather than being perceived as negative, was found to be framed either in response to patient difficulties or within the specific task routines of general dentistry. The findings illustrate trends in dentistry towards personalized care and patient empowerment as a reaction to product delivery approaches to patient management. Implications are indicated for both treatment adherence and the education of dental professionals.

The effect of social support features and gamification on a Web-based intervention for rheumatoid arthritis patients: randomized controlled trial.

BackgroundRheumatoid arthritis (RA) is chronic systematic disease that affects people during the most productive period of their lives. Web-based health interventions have been effective in many studies; however, there is little evidence and few studies showing the effectiveness of online social support and especially gamification on patients’ behavioral and health outcomes.ObjectiveThe aim of this study was to look into the effects of a Web-based intervention that included online social support features and gamification on physical activity, health care utilization, medication overuse, empowerment, and RA knowledge of RA patients. The effect of gamification on website use was also investigated.MethodsWe conducted a 5-arm parallel randomized controlled trial for RA patients in Ticino (Italian-speaking part of Switzerland). A total of 157 patients were recruited through brochures left with physicians and were randomly allocated to 1 of 4 experimental conditions with different types of access to online social support and gamification features and a control group that had no access to the website. Data were collected at 3 time points through questionnaires at baseline, posttest 2 months later, and at follow-up after another 2 months. Primary outcomes were physical activity, health care utilization, and medication overuse; secondary outcomes included empowerment and RA knowledge. All outcomes were self-reported. Intention-to-treat analysis was followed and multilevel linear mixed models were used to study the change of outcomes over time.ResultsThe best-fit multilevel models (growth curve models) that described the change in the primary outcomes over the course of the intervention included time and empowerment as time-variant predictors. The growth curve analyses of experimental conditions were compared to the control group. Physical activity increased over time for patients having access to social support sections plus gaming (unstandardized beta coefficient [B]=3.39, P=.02). Health care utilization showed a significant decrease for patients accessing social support features (B=–0.41, P=.01) and patients accessing both social support features and gaming (B=–0.33, P=.03). Patients who had access to either social support sections or the gaming experience of the website gained more empowerment (B=2.59, P=.03; B=2.29, P=.05; respectively). Patients who were offered a gamified experience used the website more often than the ones without gaming (t 91=–2.41, P=.02; U=812, P=.02).ConclusionsThe Web-based intervention had a positive impact (more desirable outcomes) on intervention groups compared to the control group. Social support sections on the website decreased health care utilization and medication overuse and increased empowerment. Gamification alone or with social support increased physical activity and empowerment and decreased health care utilization. This study provides evidence demonstrating the potential positive effect of gamification and online social support on health and behavioral outcomes.Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN): 57366516; http://www.controlled-trials. com/ISRCTN57366516 (Archived by webcite at http://www.webcitation.org/6PBvvAvvV).

Traits of Transformative Anti-Trafficking Partnerships

The efficacy of “partnerships” (between states, intergovernmental organizations, nongovernmental organizations, and businesses) to combat human trafficking should and can be assessed 15 years after the primary United Nations treaty and United States’ primary law addressing trafficking were promulgated in 2000. This article examines illustrations and lessons of partnerships around the world in eight areas of anti-human-trafficking efforts: mapping and quantifying the problem; identification, immediate care, and economic empowerment of survivors; prosecution of perpetrators; prevention through awareness and training and through reducing demand; and mobilization and coordination of resources. These areas indicate that partnerships are more likely to effectively reduce trafficking if they account for market mechanisms incentivizing perpetrators, enablers, and customers, tangible metrics, synergy between partners’ missions, and the soundness and substance of partners’ motives.

Spirituality: The Meaning as Experienced by Nurses Enrolled in Graduate Nursing Programs

The aim of this study was to understand the meaning of the lived experiences of spirituality by graduate nurses enrolled in graduate nursing programs, with the intent of bringing some clarity to the role of spirituality in nursing education and practice. The data collected in this study were recalled memory as graduate nurses lived the phenomenon of spirituality. A pilot study was conducted followed by qualitative phenomenological design. Ten graduate nurses participated in the study. The in-depth, audio-taped, face-to face, and open-ended, interviews took place in a quiet environment conducive to effective communication. The researcher observed the participants non-verbal interactions and listened attentively as they reflected on their lived experiences. The themes that emerged as a result of analyzing the data include the following: spirituality as an interconnecting force, consequences of spiritual care, personal and professional empowerment, existential quality of spirituality, and integrating spirituality in nursing research, education, education, and practice. Implications are optimistic in that the nursing profession can respond more efficiently; educating its practitioners more deliberately to address the spiritual needs of patients in a professional manner.

Pioneers in pediatric psychology: technology, mentors, collaborations, and life experiences in an evolving pediatric psychologist.

Though I hardly think of myself as a ‘‘pioneer,’’ I suppose I need to admit to being an older and hopefully wiser member of the Pediatric Psychology family. As proof of the ‘‘older’’ part, I will recount a few observations related to the impact of technology on our practice, scholarship, and communications. Transitions from traditional medical models to interdisciplinary health care systems that integrate psychosocial care and family empowerment are highlighted to underscore how we all may have grown a little wiser. My most significant observations are also my most personal. The invitation to submit this piece has provided a precious opportunity to review the role that mentors and collaborative relationships have played in the development of pediatric psychology and in my life. I will also share personal observations from challenging chapters in our family’s life that defined my perspectives and priorities about health care, psychosocial interventions, trauma, and resilience. The net impact of my professional and personal experiences has been to be open to change—in perceptions, in practices, and in professional roles—and to feel some urgency about making our individual and collective efforts count.

Coverage and quality of antenatal care provided at primary health care facilities in the 'Punjab' province of 'Pakistan'.

BackgroundAntenatal care is a very important component of maternal health services. It provides the opportunity to learn about risks associated with pregnancy and guides to plan the place of deliveries thereby preventing maternal and infant morbidity and mortality. In ‘Pakistan’ antenatal services to rural population are being provided through a network of primary health care facilities designated as 'Basic Health Units and Rural Health Centers. Pakistan is a developing country, consisting of four provinces and federally administered areas. Each province is administratively subdivided in to ‘Divisions’ and ‘Districts’. By population ‘Punjab’ is the largest province of Pakistan having 36 districts. This study was conducted to assess the coverage and quality antenatal care in the primary health care facilities in ‘Punjab’ province of ‘Pakistan’.MethodsQuantitative and Qualitative methods were used to collect data. Using multistage sampling technique nine out of thirty six districts were selected and 19 primary health care facilities of public sector (seventeen Basic Health Units and two Rural Health Centers were randomly selected from each district. Focus group discussions and in-depth interviews were conducted with clients, providers and health managers.ResultsThe overall enrollment for antenatal checkup was 55.9% and drop out was 32.9% in subsequent visits. The quality of services regarding assessment, treatment and counseling was extremely poor. The reasons for low coverage and quality were the distant location of facilities, deficiency of facility resources, indifferent attitude and non availability of the staff. Moreover, lack of client awareness about importance of antenatal care and self empowerment for decision making to seek care were also responsible for low coverage.ConclusionThe coverage and quality of the antenatal care services in ‘Punjab’ are extremely compromised. Only half of the expected pregnancies are enrolled and out of those 1/3 drop out in follow-up visits.

Prevention and control of micronutrient deficiencies in developing countries: current perspectives

Prevention and control of micronutrient deficiencies in developing countries: current perspectives Cristiana Berti,1 Mieke Faber,2 Cornelius M Smuts11Centre for Excellence in Nutrition, North-West University, Potchefstroom, South Africa; 2Non-communicable Diseases Research Unit, South African Medical Research Council, Tygerberg, South AfricaAbstract: Despite strategies employed to tackle micronutrient malnutrition, limited progress has been achieved in the developing countries. Of global concern are deficiencies in iron, vitamin A, zinc, folate, and iodine. This review aims to explore up-to-date scientific evidence on the effect of different micronutrient strategies on biomarkers and health outcomes, and for each strategy, to highlight strengths, limitations, and factors contributing to success or failure. PubMed/MEDLINE and EBSCO databases and Google-indexed scientific literature were searched for relevant articles and documents, limited to human studies reported since 2003. Evidence shows that the most cost-effective approaches to address symptoms of micronutrient malnutrition are targeted supplementation and/or fortification with iron, iodine, zinc, folic acid, vitamin A, and multimicronutrients, provided that households have access to primary health care and that there is consistent long-term coverage, monitoring, adequate marketing, and commercial commitment. Dietary diversification/modification interventions are probably the most sustainable strategies to address causes of deficiency, but permanent solutions are still required in controlling micronutrient malnutrition at both research and public health levels. Furthermore, many scientific gaps remain, hindering the development of robust public health guidance. These gaps are due to the paucity of well-designed community-based studies, lack of information on biological mechanisms behind relationships between micronutrients and outcomes, and inconsistent results. Further adequately powered long-term trials are needed to fill these gaps. Lessons learned from large-scale nutritional programs suggest that, for long-term improvements in nutrition and health, dietary strategies must integrate agricultural production with primary health care and female nutrition education and empowerment. They must also promote behaviors that support adequate intake, ensure availability of supply, and help to empower communities to become more self-reliant.Keywords: fortification, supplementation, sustainability, integrated nutritional programs, resource-poor populations, dietary diversification

Integrating Patient‐Centered Care and Clinical Ethics Into Nutrition Practice

The purpose of this article is to present the application of patient-centered care and clinical ethics into nutrition practice, illustrate the process in a case study, and promote change in the current healthcare clinical ethics model. Nutrition support clinicians have an opportunity to add another dimension to their practice with the incorporation of patient-centered care and clinical ethics. This represents a culture change for healthcare professionals, including nutrition support clinicians, patients and their family. All of these individuals are stakeholders in the process and have the ability to modify the current healthcare system to improve communication and facilitate a change by humanizing nutrition support practice. Nutrition support is a medical, life-sustaining treatment, and the use of this therapy requires knowledge by the nutrition support clinician of patient-centered care concepts, preventive clinical ethics, religion/spirituality and cultural diversity, palliative care team role, and advance care planning. Integrating these into the practice of nutrition support is an innovative approach and results in new knowledge that requires a change in the culture of care and engagement and empowerment of the patient and their family in the process. This is more than a healthcare issue; it involves a social/family conversation movement that will be enhanced by the nutrition support clinician's participation.

Highlights of the EDTNA/ERCA’s 42nd international conference

This year’s EDTNA/ERCA conference ‘Innovation of Renal Care through Multi-professional Leadership’ was recently held in Malmo, Sweden. In this short article, the assocation’s UK Key Member Marissa Dainton tells renal nurses about her event highlights, including lectures on psychological aspects of care, leadership and patient empowerment.

Design challenges for ubiquitous and personal computing in chronic disease care and patient empowerment: a case study rethinking diabetes self-monitoring

This paper aims to raise issues concerning the design of self-care technology, which supports an increasing number of individuals' chronic disease in everyday life. It discusses the results of an ethnographic study that exposes the intricacies and practicalities of managing diabetes in everyday life, and informs the patient-centric design of a diabetes journaling tool. It also sheds light on some everyday chronic self-care practices and suggests how to re-think some of the assumptions and connotations of the current medical model and the traditional role of the patient, which is not always fully appreciated in the design of ubiquitous and personal technologies for the patient. In particular, the analysis covers: the open-ended and uncertain nature of chronic care, the wide inter- and intra-variability of patients' conditions and attitudes towards the disease, and the need for more symmetrical interactions and consultations with medical experts. These findings informed the design of a proof of concept called Tag-it-Yourself (TiY), a mobile journaling tool that enables the personalisation of self-monitoring practices. A final discussion on the actual use of the TiY tool is also offered along with general implications for the design of self-care technologies and an outline of future directions for research in this area.

The evolution of an award-winning MTM program

For a pharmacy program, it doesn’t get much better than this. In 2010, the Henry Ford Health System (HFHS) Health Alliance Plan’s (HAP) Medication Therapy Management Program (MTMP) received one of URAC’s Gold Awards for Best Practices in Health Care Consumer Protection and Empowerment. URAC, a health care accreditation organization, gives these awards to innovative, results-oriented programs that have made a difference in the lives of patients.