Self-help Networks Research Articles

Malnutrition in Head and Neck Cancer: A Patient-reported Outcome Study.

Head and neck cancer (HNC) is associated with a high risk of malnutrition. Malnutrition is defined as acute weight loss greater than 5% and increases mortality 1.7-fold for HNC patients. The aim of the study was to investigate the social and nutritional impairments that patients face throughout cancer-survivorship. The study was conducted nationwide via the self-help network and in a single oncological center. We analysed 134 patient reported outcome (PRO) questionnaires with a mean age of 65.5±9.4 years, including 88 males, 36 females, and ten participants of undisclosed sex. The questionnaire contained 47 items enquiring about demography, weight development, and how treatment impaired nutrition. The patient data showed a weight loss of 8% after surgery, 13% after (chemo)radiotherapy [(C)RT] and a return to baseline weight in convalescence. However, patients with a baseline weight >100 kilogram (kg), had a 22% weight loss after (C)RT (p<0.0001) and this remained permanent at 11% (p=0.0041). Treatment-associated side-effects gradually decreased in the course compared to the time of treatment: loss of taste (55% to 21%), xerostomia (56% to 42%), dysphagia (57% to 43%), and dental problems (33%/ to 21%). (C)RT immediately led to more loss of taste (p=0.0461) and dysphagia (p=0.0334), and surgery as a singular modality scored the lowest odds ratio for side-effects. Social Impact: mood, supporting networks, and supplement satisfaction were rated "good" (Likert Scale). Malnutrition is common among HNC patients. High baseline weight and extensive multimodal treatment are important risk factors that require enhanced stewardship.

The impact of stigmatization of psoriasis, atopic dermatitis and mastocytosis in different areas of life-Aqualitative interview study.

Stereotypes and false assumptions about chronic and visible skin diseases can determine the behaviour towards affected individuals and result in stigmatization or discrimination. The aim of this study was to analyze the perceived disease-related stigmatization of individuals with psoriasis, atopic dermatitis (AD) or mastocytosis. The study also aims to broaden people-centred knowledge of the effects of stigmatization in different areas of life, namely in everyday life, at work, in sports and in relationships. Qualitative in-depth semi-structured interviews were conducted among individuals with either psoriasis, AD or mastocytosis. Participants were recruited via self-help networks and were asked to express their experience of stigmatization in different areas of life. All interviews were audio recorded, transcribed verbatim and evaluated based on Mayring's content analysis. In total, 24 individuals aged 19-79years and living in Germany were included in the study-eight for each disease. Stigmatization was experienced in all three diseases in all mentioned areas of life as well as in interaction with medical professionals. Self-exclusion, negative self-perception and negative behaviour of others were the most frequent experiences with stigmatization. Stigmatization, both internal and external, is an important factor contributing to the mental burden of people with chronic skin diseases. More research is needed to gain deeper insight into stigmatization and its psychological burden in various contexts to enhance people-centred care in chronic skin diseases.

Как интернет (почти) победил режим

Maxim Rust surveys the history and practical logistics of Belarusian grassroots initiatives of community relief and assistance to the regime's victims that have reached massive proportions with the rise of the Belarusian civil protest movement in August 2020. Conceptualizing this phenomenon as a process of societal self-organization, Rust shows how the logic of the situation in Belarus has turned its previously largely apolitical booming information technology sector into the economic and organizational backbone of political protest. The new economy employs the new Belarusians, who communicate their new subjectivity in street actions, on Telegram channels, or through coordinating sophisticated social self-help networks. This confluence of new people with new social and economic structures underscores the incompatibility of Aliaksandr Lukashenka's repressive regime with the future of Belarus.

Empowerment: Mechanism to Develop Life Quality for Thai Persons with Disabilities

Persons with disabilities are regarded as a group of “vulnerable persons” in the society because of their physical or mental health problems that lead to hardship for self-adjustment to the society. These problems put the disabled persons at risk as they are more vulnerable to all changes in their lives. Therefore, the disabled should receive special attention on living conditions and social welfare to improve their life equality in the society. Apart from receiving rehabilitation or welfare from the government and relevant agencies, under the “EQUAL” strategy, the disabled person should be empowered for their better life quality. Empowerment is defined as building of power for the disabled persons, both internally and externally. The programs to promote their internal competence such as knowledge, attitude toward self and society, and living skills should be provided through experiential learning. By doing so, the disabled persons are expected to apply those competences for better living and life quality. Complementarily, external empowerment such as support from family, self-help network, government and private agencies should be provided to develop various skills for the disabled persons, as well as adjustment of physical and social environment to serve needs of the disabled persons. Such empowerment schemes should aim for promotion of self-reliance and independent living that allow the disabled persons to use their knowledge and competences. As a result, the disabled persons will reduce external support and become more self-independent to achieve equal life quality in the era of disruptive changes.

The Khmer Lands of Vietnam: Environment, Cosmology and Sovereignty

The indigenous people of Southern Vietnam, the Khmer Krom, live in a region over which Vietnam and Cambodia have contesting claims. Regarded by nationalists in both countries with ambivalence and under pressure to change their way of life, they have coped with destructive wars, environmental re-engineering and nation-building policies by selectively engaging the world beyond, while continuing to draw upon local resources, self-help networks and understandings. This path-breaking study uncovers the sophistication of the Khmer Krom ecological repertoire and charts their diverse adaptations to an ecologically complex river delta. It relates the myths through which they orient themselves in place and history and invest their local circumstances with cosmological significance. As well as its ethnographic insights and offer of an indigenous, non-Vietnamese history of the region, the book will also attract environmental studies scholars interested in a close-grained study of the ecology of a river delta.

Rural Cooperatives Magazine, January/February 2015

Features - Forging a Self-help Network; Investing in Knowledge; Farmer Co-op Conference ‘14; Proposed changes in USDA’s BI Survey results shed light on dairy co-op financial performance; Required Reading; Resolving Member Conflicts

Transnational self-help networks and community forestry: A theoretical framework

Global forest governance is generally analyzed as highly fragmented, meaning that it involves a multiplicity of actors and institutions. This fragmentation may be one explanation of the proliferation of multiple discourses around forest governance produced by some dominant actors. In this context, community forestry organizations are seeking, through their association in the form of transnational self-help networks, to promote alternative discourses around their own model of communitarian governance. These recent experiences question the traditional concepts and approaches that only consider community forestry organizations at the local scale.Based on a transnational political sociology perspective and on concrete experiences from Mesoamerica, this paper aims to present an innovative analytical framework to understand how transnational self-help networks of community forestry contribute to transform norms of forest governance through their discourses. It aims in particular to capture the mechanisms leading to the translation of norms between scales and the production of discourse coalitions within the network. The goal is finally to consider transnational self-help networks of community forestry as full-fledged actors within global forest governance, with the capacity to transform the nature of key norms of governance, particularly those directly affecting their own model.

The power of the powerless: Neighbourhood based self-help networks of the poor in Istanbul

Recent poverty research focuses on the household responses to poverty through structure vs. agency perspectives. The human agency perspective, however, provides us important insights for looking beyond these simplistic tendencies which assume poor people as inherently passive, or envision them as helpless victims. In Turkey, politicians view poverty as a temporary and manageable problem which can be dealt with the provision of more charity or community support. Migrant networks, informal sector work and social assistance are considered to be important mechanisms that would provide resources for the poor. This paper argues that for some of the poor households none of these mechanisms provide sufficient resources. Instead, neighbourhood-based small-group solidarities and self-help networks enable those poor to develop collective capabilities and make ends meet. The paper also reveals that in Turkey, the implementation of social policies for poverty reduction could bring about relationships of patronage and in some cases contribute to existing inequalities.

Survivors: Jewish Self-Help and Rescue in Nazi-Occupied Western Europe by Bob Moore

The academic study of Jewish survival during the Holocaust has, unsurprisingly, been an emotionally charged topic. Although the Holocaust’s death toll of six million is widely accepted, the vastly different mortality rates across Europe have long been a puzzle to historians. The fact that more than half of the Jews in Western Europe survived the War, while Eastern European Jewry was decimated, has traditionally been explained through single-country studies of who was killed. In an attempt to advocate for the agency of Jewish victims and establish the existence of Jewish resistance and self-help, more nuanced discussions of the how and why of Jewish survival have often been brushed aside. Bob Moore’s Survivors, however, seeks to shed light on who lived and why through a comparative study of nearly everymajorWestern European Jewish community. While emphasizing the importance of both escape and hiding, Moore’s book highlights the significance of interconnected Jewish self-help networks along with aid from nonJews, and uses a critical mass of painstaking national studies to argue that idiosyncratic national and local circumstances were key to determining chances of survival. In reviewing the circumstances and choices that Jews had in rescue and self-help in Western Europe during theWar,Moore looks at themes and questions that are familiar to students of the Holocaust. However, Survivors offers the depth and breadth necessary to do more than merely challenge the narrative of Jewish passivity. Moore identifies four major gaps in the history of Jewish rescue and self-help: the importance of chronological, geographical, and social contexts to acts of rescue by non-Jews, the relationship between individual acts of rescue and networks, the structure and organization of Jewish communities in Western Europe, and the interrelationship between rescue and self-help. By investigating these gaps, Moore presents a picture of Jewish self-help and rescue that is both more orderly and more chaotic than what historians have been taught to expect. Through an analysis of local and individual circumstances, Survivors shows that many Western European Jews had choices though these were limited by their nationality, language, location, finances, and community relations, among other factors. Hum Rights Rev (2013) 14:293–294 DOI 10.1007/s12142-013-0279-x

자기역량강화프로그램이 저소득층 재가 암환자의 암증상, 자기효능감, 자아존중감 및 자기역량에 미치는 효과

Purpose: The purpose of this research was to develop and evaluate the effects of an empowerment program. Method: We developed an 8-week empowerment program to decrease cancer symptoms and increase self-efficacy, self-esteem, and empowerment. This program includes aspects concerning self-knowledge and management, self-help groups, self-advocacy, resource network, and laughter therapy. We evaluated the effects of this program on 32 home-based cancer patients (one group pretest-posttest design). The data collection was performed from August 22, 2011 to October 13, 2011. Data were analyzed using the SPSS/WIN 18.0 program. Result: There were significant differences in self-esteem derived from the empowerment program. However, there were no significant differences in cancer symptoms, self-efficacy, and empowerment after the program. Conclusion: More research, using a control group pretest-posttest design that considers an appropriate intervention duration, is needed to more accurately examine the effects of the program. We expect this intervention to improve the empowerment of home-based cancer patients.

Production Line Data Acquisition and Interlock System

Currently, the competitiveness of enterprises is turning to a full range of competitive products, quality, cost, and services. At the same time production is gradually shifted to automation, systematic mode. In this context, the fast, accurate transfer of information within the enterprise becomes particularly important. In order to manufacture products according to customer requirements, and efficient to meet the market demand, it’s vital to collect and deliver information timely and accurately during the whole process of production. This paper presents a data acquisition and interlock system for wafer production line to achieve the comprehensive management and control of the production process of the wafer. The system uses the Internet of Things (IOT) technology, wireless self-help network connection to connect network while booting. This achieves parameter settings, data acquisition, smart management and real-time monitoring of the flow sequence control in wafer production. In addition, the Internet of Things wireless communication technology to provide greater flexibility, fluidity, eliminating the cost and effort spent on wiring, realized in the true sense of the real-time, intelligent, low-power effect.

Collective strength

Current theories of social power suggest that development of a shared social identity can create the possibility of bringing about political and attitudinal change as well as benefiting individual psychological well-being. This exploratory, qualitative, internet-based study extending over two years explored the impact of developing a shared social identity among a group of people with early-stage dementia. We investigated the experience of belonging to the self-help network Dementia Advocacy and Support International (DASNI), and its effect on self-concept and adjustment, from the perspective of DASNI members in order to understand more about the factors that promote self-help, and the effects of engaging in self-help, mutual support and advocacy in this context. Seven active members of DASNI with a dementia diagnosis volunteered to participate. Interviews were conducted via email, and Interpretative Phenomenological Analysis (IPA) was used to develop a thematic account. The challenges engendered by the onset of dementia were reflected in descriptions of loss, struggle and uncertainty. Participating in DASNI, in contrast, engendered a sense of collective strength and having something valuable to contribute, and made it possible to discover that there can be life after diagnosis. Belonging to DASNI helped to counteract the challenges to self and identity posed by developing dementia, thus significantly affecting the experience of living with dementia, and creating the possibility of effecting social change. Gradually, people in the mild to moderate stages of dementia are developing a `voice' and rejecting the passive patient role. One important element in this process is the way in which people with dementia band together to help themselves and one another, and influence social attitudes, through mutual support and collaborative advocacy. The development of DASNI, consistent with recent theoretical developments in conceptualizing processes of social power and influence, offers significant potential for change.

Impaired Subjective Health Status in 256 Patients with Adrenal Insufficiency on Standard Therapy Based on Cross-Sectional Analysis

There is mounting evidence that current replacement regimens fail to restore health-related subjective health status fully in patients with adrenal insufficiency (AI). Here we evaluated the subjective health status in primary and secondary AI and the effect of concomitant disease. In a cross-sectional study, all AI patients registered with the University Hospital Wuerzburg (n = 148) or with the German Self-Help Network (n = 200) were contacted by mail. Underlying diagnoses and comorbidities were verified by review of medical records. Patients were asked to complete three validated self-assessment questionnaires [Short Form 36 (SF-36), Giessen Complaint List (GBB-24), Hospital Anxiety and Depression Scale (HADS)]. Results were compared to sex- and age-matched controls drawn from the questionnaire-specific reference cohorts. We identified 348 patients, and 256 agreed to participate. Completed questionnaire sets were available from 210 patients [primary AI (n = 132), secondary AI (n = 78)]. Seven of eight SF-36 dimensions, all five GBB-24 scales, and the HADS anxiety score reflected significant impairment of subjective health status in both AI cohorts (all P < 0.001). Even after exclusion of all patients with any concomitant disease, subjective health status remained significantly impaired in five SF-36 subscales and four GBB-24 subscales. Secondary AI patients were slightly more compromised than primary AI, significant with regard to two SF-36 scales (P < 0.05) and the HADS depression score (P < 0.001). A total of 18.3% of the AI patients were out of work, compared to 4.1% in the general population. Patients with AI on current standard replacement suffer from significantly impaired health-related subjective health status, irrespective of origin of disease or concomitant disease. Future studies will have to assess whether more physiological glucocorticoid replacement strategies in AI will ameliorate these impairments.

The British Society of Young Publishers: Sixty years of an extraordinary collaborative, self-help network

The British Society of Young Publishers: Sixty years of an extraordinary collaborative, self-help network

The impact of Christian counselling on survivors of sexual abuse

The absence of research and growing involvement of Christians in all areas of counselling gave rise to this study which explores the impact of Christian counselling on adult survivors of sexual abuse. The sample of 44 women and 5 men from an inter-denominational, self-help network, completed a self-report questionnaire of perceived Christian and professional counselling experiences involving issues of trust, power, directive approach, use of prayer and Scripture, responsibility and outcome. Results show that Christian counselling is experienced as qualitatively different from professional counselling: Christian counsellors are perceived as significantly more directive and more powerful than professional counsellors and the overall outcome was perceived more negatively. A number of key factors were identified which influenced the negative experience of some Christian counselling. These included having experience of professional counselling, an emphasis on the use of prayer and Scripture, perceiving the counsellor to have different goals from the client, feeling blamed for continued distress and having prior experience of prayer ministry. Implications for counselling practice and training are discussed.

Expanding the range of interventions to reduce HIV among adolescents.

Structural interventions are identified to reduce adolescents' HIV risk. The goals, strategies, approaches, and delivery sites of adolescent HIV prevention programs are reviewed. In addition to reducing sexual activity and substance use, HIV prevention programs may also reduce adolescents' HIV risk by: decreasing poverty; ensuring access to HIV testing, healthcare, general social skills training, and employment opportunities; and requiring community service for students. Adolescent HIV prevention programs do not currently utilize diverse modalities (computers, videotapes, television, telephone groups, computerized telephones) or sites (parents' workplaces, religious organizations, self-help networks, primary healthcare clinics) for delivering interventions. Diversifying current approaches to HIV prevention include: economic development programs; mandating delivery of programs at key developmental milestones (e.g. childbirth, marriage) and settings (school-based clinics, condom availability programs); securing changes in legislative and funding policies through ballot initiatives or lawsuits; and privatizing prevention activities. To implement structural HIV interventions for adolescents requires researchers to shift their community norms regarding the value of innovation, adopt designs other than randomized controlled trials, expand their theoretical models, and adopt strategies used by lawyers, private enterprise, and lobbyists.

A study of rural women's satisfaction with a breast cancer self-help network.

The impact of breast cancer on the emotional and social health of women and their families is an important issue for the cancer field. Nevertheless, many patients do not avail themselves of support programmes. In rural communities there is often a lack of services, which, for many, leads to a perception of 'being alone' in the struggle to become better. This paper reports an evaluation of a pilot project to facilitate a self-help peer support group network: an extensive provincial audio teleconferencing network for rural breast cancer survivors, established by the Telemedicine Centre of the Memorial University of Newfoundland. A satisfaction questionnaire was distributed to participants in the pilot programme. Responses suggested that they were very satisfied with the use of audio teleconferencing for the facilitation of a social support programme. The programme appeared to help bridge the isolation gap that rural women with breast cancer often experience. The results have implications for the provision of self-help social support services through audio teleconferencing, as well as for the quality of life and wellbeing of rural women.

Partnerships between Self-Help Networks and Health Care Facilities: The Case of the Bayview Support Network

This article discusses the role of patients and their families as peer support providers to other patients, and as decision makers within organizations. We use as a model the Bayview Support Network, a self-help network at the Toronto-Sunnybrook Regional Cancer Centre. We review the benefits of partnership, costs, limitations and risks. A list of features that contribute to effective partnerships is also provided.

Developing a post-adoptive service for adoptive families

Abstract Adoption today is frequently used as a provision for older children, or children with special needs, who cannot live with their family of origin. Research indicates that adoptive families may need a wide range of services long after the adoption order has been granted. This ongoing support has resource implications for Local Authorities, and at present post adoption services are patchy and underdeveloped. We describe the various elements that make up a comprehensive post adoption service for adoptive families such as self-help networks, dissemination of information, counselling and therapeutic input, training programmes and practical help. Against a background of shortage of resources we raise questions about the future organisation of post adoption services.

Needs assessment in Scotland: collaboration in publichealth

The National Health Service reforms revitalised the national emphasis on the public's health and health needs assessment. In Scotland, in contrast with England, there was no central investment in the development of methods and programmes for needs assessment in the context of the new NHS. To achieve a concerted effort, therefore, a self-help network—the Scottish Needs Assessment Programme (SNAP)—was created by the Scottish Forum for Public Health Medicine. This paper describes its evolution to the point where it is now supported as part of a national network of information for purchasing.