Perceptions of Men With Moderate to Severe Hemophilia Regarding the Management of Their Chronic Disorder and Utilization of Community-Based Support

2014 ◽  
Vol 9 (6) ◽  
pp. 486-495 ◽  
Author(s):  
Erik B. Rolstad
Keyword(s):  
Nonprofit Organizations ◽  
Local Community ◽  
Qualitative Interviews ◽  
Social Needs ◽  
Support Network ◽  
Theory Approach ◽  
Severe Hemophilia ◽  
Psychosocial Needs ◽  
Community Based ◽  
Adult Men

Hemophilia is a genetic bleeding disorder that almost exclusively affects men. There is a nationwide network of nonprofit organizations providing support to men with hemophilia, which are affiliated with localized agencies that serve affected individuals within specific regions of the country. This community-based study was implemented in response to a local Utah agency’s concern that men with hemophilia may be disengaged from and underserved by their local support network. The goal of the study was to gain a better understanding of the (a) unique challenges, (b) adaptations, and (c) physical, financial, psychological, and social needs of adult men with moderate to severe hemophilia from the local community. Over a period of 9 months, verbal qualitative interviews were conducted with 10 affected individuals, and written interviews were obtained from 3 additional participants. Using a grounded-theory approach, six themes were identified, based on men’s commentary from interviews, across a spectrum of physical, social, communal, personal, medical, and vocational dimensions. Resilience theory, which explores internal resources that assist in coping with adverse situations, was used as a framework for interpreting research results. Findings indicate that men value the array of educational, social, and medical services that are available to them but choose to manage their hemophilia independently from the community and access support according to their individual needs. Understanding this dynamic may be helpful in developing services that are more specifically tailored to the physical and psychosocial needs of adult men with hemophilia and, potentially, men with other chronic health disorders.

scholarly journals Sustaining community-based interventions for people affected by dementia long term: the SCI-Dem realist review

BMJ Open ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. e047789
Author(s):  
Thomas Morton ◽  
Geoff Wong ◽  
Teresa Atkinson ◽  
Dawn Brooker
Keyword(s):  
Financial Management ◽  
Local Community ◽  
Grey Literature ◽  
Realist Review ◽  
Social Needs ◽  
Support Network ◽  
Small Scale ◽  
Community Based Interventions ◽  
Community Based

ObjectivesCommunity-based support for people with earlier-stage dementia and their care partners, such as regularly meeting groups and activities, can play an important part in postdiagnostic care. Typically delivered piecemeal in the UK, by a variety of agencies with inconsistent funding, provision is fragmented and many such interventions struggle to continue after only a short start-up period. This realist review investigates what can promote or hinder such interventions in being able to sustain long term.MethodsKey sources of evidence were gathered using formal searches of electronic databases and grey literature, together with informal search methods such as citation tracking. No restrictions were made on article type or study design; only data pertaining to regularly meeting, ongoing, community-based interventions were included. Data were extracted, assessed, organised and synthesised and a realist logic of analysis applied to trace context–mechanism–outcome configurations as part an overall programme theory. Consultation with stakeholders, involved with a variety of such interventions, informed this process throughout.ResultsAbility to continually get and keep members; staff and volunteers; the support of other services and organisations; and funding/income were found to be critical, with multiple mechanisms feeding into these suboutcomes, sensitive to context. These included an emphasis on socialising and person-centredness; lowering stigma and logistical barriers; providing support and recognition for personnel; networking, raising awareness and sharing with other organisations, while avoiding conflict; and skilled financial planning and management.ConclusionsThis review presents a theoretical model of what is involved in the long-term sustainability of community-based interventions. Alongside the need for longer-term funding and skilled financial management, key factors include the need for stigma-free, person-centred provision, sensitive to members’ diversity and social needs, as well as the need for a robust support network including the local community, health and care services. Challenges were especially acute for small scale and rural groups.

Socio-cultural web and environmentally-driven community entrepreneurship: a portrayal of Abia Ohafia community in South-Eastern Nigeria

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Ebere Ume Kalu ◽  
Lp Dana
Keyword(s):  
Social Capital ◽  
Cultural Capital ◽  
Design Methodology ◽  
Local Community ◽  
Social Needs ◽  
Community Based ◽  
Push Factors ◽  
Content Type ◽  
Social And Cultural Capital ◽  
Wide Scale

Purpose This study is aimed at providing a deduction on the necessity of social and cultural capital for entrepreneurial outcomes on a community-wide scale. Design/methodology/approach There is a drift from an individualised form of entrepreneurship to community-based entrepreneurship with a grand focus on social needs of current and emergent nature. This study is both archival and exploratory and has pictured culture and communality as drivers that are needful for enterprising communities. Findings This paper finds communality, social network, social capital and trust as push-factors for community-based entrepreneurship and development drives. Originality/value This study is an original exposé on the Abia Ohafia community’s Model of community-based entrepreneurship which thrives on strong institutions (like the Age Grade System) and age-long practices that have built trust and stability. This local community through its networks, culture and communalities creates relationships, rational innovation, consensual leadership and participatory followership under which resources, opportunities and solutions are deliberately advanced for meeting social and community purposes.

Adoption, Sustainability, and Dissemination of Chronic Disease Prevention Policies in Community-Based Organizations

2019 ◽  
Vol 22 (1) ◽  
pp. 72-81
Author(s):  
Kendall A. Leser ◽  
Sherry T. Liu ◽  
Carol A. Smathers ◽  
Cheryl L. Graffagnino ◽  
Phyllis L. Pirie
Keyword(s):  
Diffusion Of Innovation ◽  
Structural Changes ◽  
Local Community ◽  
Environmental Changes ◽  
Qualitative Interviews ◽  
Relative Advantage ◽  
Breastfeeding Support ◽  
Community Based ◽  
Community Based Organizations ◽  
Policy Systems

Introduction. Despite increasing interest in structural (policy, systems, and environmental) changes to improve health, little attention has focused on the adoption, implementation, sustainability, and potential for dissemination of these changes among local community-based organizations. Method. A mixed methods approach was used for this process evaluation. Representatives of nine community-based organizations were surveyed using closed-ended questions and in-depth qualitative interviews to describe 32 policy changes. Diffusion of Innovation theory was used to inform the development of survey questions and the interview guide. Results. Policies adopted by local community-based organizations concerned types of food/beverages provided to staff/clients, methods to encourage physical activity, breastfeeding support, and tobacco control. The majority of the policies were either fully (66%) or partially (31%) implemented 1 year after their initial adoption. In general, participants somewhat/strongly agreed that policies had characteristics that predict sustainability/diffusion (relative advantage, compatibility, complexity, trialability, observability). In-depth interview responses described a generally smooth process for policy adoption and high levels of optimism for continued sustainability but revealed few efforts to disseminate the policies beyond the original organization. Conclusions. Structural changes in community-based organizations are a valuable tool for encouraging healthy changes in communities and have great potential to be adopted, sustained, and diffused.

scholarly journals 2315

2017 ◽  
Vol 1 (S1) ◽  
pp. 47-48
Author(s):  
Amy LeClair ◽  
Carolyn Rubin ◽  
Keyword(s):  
Local Community ◽  
Medical Center ◽  
Qualitative Interviews ◽  
Community Based Participatory Research ◽  
Community Organizations ◽  
Lessons Learned ◽  
Community Research ◽  
Community Based ◽  
Academic Researchers ◽  
The Impact

OBJECTIVES/SPECIFIC AIMS: Addressing Disparities in Asian Populations through Translation research (ADAPT) is a community-research partnership funded by the Tufts Clinical Translational Sciences Institute (CTSI). Founded in 2011, this collaborative brings together 7 Chinatown-serving community-based organizations and academic researchers with the goal of improving health for the local Chinatown community and beyond. The goal of this research project was to document the best practices, lessons learned, and process through which ADAPT has developed and grown. The aim of this project is to disseminate the model to other CTSAs who are currently engaged in METHODS/STUDY POPULATION: We used a combination of qualitative interviews and content analysis to gather data on the evolution of ADAPT over the last 5 years. Current members from both community organizations and the university/medical center were interviewed about their experiences participating in ADAPT. When possible, interviews were recorded and transcribed verbatim. Deidentified transcripts and administrative documents including meeting minutes, conference summaries, bylaws, and mission statements were coded using Dedoose analytic software. RESULTS/ANTICIPATED RESULTS: Established community-based participatory research (CBPR) principles, including mutual respect, transparency, and commitment, are viewed as necessary, but not sufficient. Patience—both with other members and with the group as a work in progress—is highlighted as being a necessary characteristic of participants. Time and funding are 2 of the most important resources, and the majority of members agree that there is no substitute for “skin in the game.” Attempts at last minute, opportunistic engagement were provided as examples of what had not worked. One ongoing tension is the balance between process and product. Individual members are beholden to organizations to different degrees, and the need to produce something in the form of publications or grant money can limit the amount of time members can commit to the collaborative. At the same time, these products are unlikely to materialize if members are not invested in the process of growing and sustaining the collective. DISCUSSION/SIGNIFICANCE OF IMPACT: Out of the 7 community organizations who currently participate in ADAPT, only 1 is explicitly focused on health in the traditional sense. The others are primary service organizations, but because they understand the impact of the social determinants of health on the local community—including housing, employment, education, nutrition, among other factors—the research collaborative is able to leverage the knowledge and expertise of the academic researchers and the community partners to focus on health topics most salient to the local Chinatown community.

Determination of core zone of marine sanctuary in Bahoi Village, North Minahasa Regency

2013 ◽  
pp. 10
Author(s):  
Sonny Tasidjawa ◽  
Stephanus V Mandagi ◽  
Ridwan Lasabuda
Keyword(s):  
Conventional Method ◽  
Local Community ◽  
Marine Protected Area ◽  
Final Decision ◽  
Marine Biota ◽  
Small Community ◽  
Community Based ◽  
Simple Method ◽  
Core Zone ◽  
The Core

Bahoi village is located in West Likupang District of North Minahasa Regency. It is one of the villages that is included in the conservation network of North Sulawesi Province. A marine sanctuary has been established in this village in 2003 and it has been managed by local community, known as community-based marine sanctuary management, since then, this sanctuary has been in operation. As a small community-based marine protected area with lots of users, it requires an appropriate method to determine the Core Zone that allows an effective preservation of the marine biota. This is the driving factor of this study.  The purpose of this study is to examine the processes and output of determining the core zone of a Marine Sanctuary using a conventional method and Marxan Method. The conventional method is a simple method in determining a core zone such as using manta tow technique. While Marxan, it only requires input of data such as spatial and figures to generate information for determining the core zone. After comparing the processes of these two methods in the study site, it was found that Marxan method was more effective and more accurate with lower costs than the conventional one. In addition, the final decision of the core zone depended on the outcome of the village meetings when the conventional method was applied. This long process could be avoided when Marxan method was used. Therefore, it is highly recommended to use Marxan in determining core zones© Desa Bahoi terletak di Kecamatan Likupang Barat Kabupaten Minahasa Utara. Desa ini merupakan salah satu desa yang masuk dalam jejaringan kawasan konservasi di Provinsi Sulawesi Utara. Sebuah Daerah Perlindungan Laut telah didirikan di desa ini pada tahun 2003 dan dikelolah oleh masyarakat setempat, yang dikenal sebagai pengelolaan Daerah Perlindungan Laut Berbasis Masyarakat, sejak saat itu Daerah Perlindungan Laut ini telah beroperasi. Sebagai Daerah Perlindungan Laut Berbasis Masyarakat yang kecil namun memiliki banyak pengguna, diperlukan metode tepat yang akan menentukan Zona Inti yang memungkinkan pelestarian biota laut menjadi sangat efektif. Ini adalah faktor pendorong dari penelitian. Selanjutnya, tujuan dari penelitian ini adalah untuk mengkaji proses dan hasil penentuan zona inti Daerah Perlindungan Laut dengan menggunakan metode konvensional seperti survei manta tow dan marxan. Metode konvensional adalah metode sederhana dalam menentukan zona inti seperti teknik manta tow. Sedangkan marxan, hanya perlu memasukan data seperti spasial dan angka untuk menghasilkan informasi penentuan zona inti. Setelah membandingkan proses dari dua metode di lokasi penelitian, ditemukan bahwa metode marxan jauh lebih baik dari pada metode konvensional, karena lebih efektif, lebih akurat dengan biaya yang lebih rendah. Selain itu, keputusan akhir dari zona inti tergantung pada hasil rapat desa ketika metode konvensional diterapkan, proses panjang ini dapat dihindari jika metode marxan digunakan©

scholarly journals Compounded trauma: A qualitative study of the challenges for refugees living with advanced cancer

2021 ◽  
pp. 026921632110002
Author(s):  
Ping Guo ◽  
Sawsan Alajarmeh ◽  
Ghadeer Alarja ◽  
Waleed Alrjoub ◽  
Ayman Al-Essa ◽  
...  
Keyword(s):  
Social Support ◽  
Qualitative Study ◽  
Advanced Cancer ◽  
Psychosocial Support ◽  
Large Population ◽  
Community Support ◽  
Support Network ◽  
Psychosocial Needs ◽  
Physical And Mental Health ◽  
The Impact

Background: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. Aim: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. Design: A qualitative study using semi-structured interviews. Setting/participants: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. Results: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment. Conclusions: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.

scholarly journals Factors Associated with Patients’ Connection to Referred Social Needs Resources at a Federally Qualified Health Center

2021 ◽  
Vol 12 ◽  
pp. 215013272110243
Author(s):  
Tyler Lian ◽  
Kate Kutzer ◽  
Diwas Gautam ◽  
Howard Eisenson ◽  
Jane C. Crowder ◽  
...  
Keyword(s):  
Health Center ◽  
Social Services ◽  
Social Needs ◽  
Phone Call ◽  
Community Based ◽  
Factors Associated ◽  
Federally Qualified Health Center ◽  
Or Applications ◽  
Improve Health

Introduction: In an effort to improve health outcomes and promote health equity, healthcare systems have increasingly begun to screen patients for unmet social needs and refer them to relevant social services and community-based organizations. This study aimed to identify factors associated with the successful connection (ie, services started) to social needs resources, as well as factors associated with an attempt to connect as a secondary, intermediate outcome. Methods: This retrospective cohort study included patients who had been screened, referred, and subsequently reached for follow-up navigation from March 2019 to December 2020, as part of a social needs intervention at a federally qualified health center (FQHC). Measures included demographic and social needs covariates collected during screening, as well as resource-related covariates that characterized the referred resources, including service domain (area of need addressed), service site (integration relative to the FQHC), and access modality (means of accessing services). Results: Of the 501 patients in the analytic sample, 32.7% had started services with 1 or more of their referred resources within 4 weeks of the initial referral, and 63.3% had at least attempted to contact 1 referred resource, whether or not they were able to start services. Receiving a referral to resources that patients could access via phone call or drop-in visit, as opposed to resources that required additional appointments or applications prior to accessing services, was associated with increased odds (aOR 1.95, 95% CI 1.05, 3.61) of connection success, after adjusting for age, sex, race, ethnicity, education, number of social needs, and resource-related characteristics. This study did not find statistically significant associations between connection attempt and any variable included in adjusted analyses. Conclusion: These findings suggest that referral pathways may influence the success of patients’ connection to social needs resources, highlighting opportunities for more accessible solutions to addressing patients’ unmet social needs.

scholarly journals Local Community-based Initiatives of Waste Management Activities on Bunaken Island in North Sulawesi, Indonesia

2013 ◽  
Vol 5 (12) ◽  
pp. 737-743 ◽  
Author(s):  
Trina E. Tallei ◽  
Julius Iskandar ◽  
Sonny Runtuwene ◽  
Walter Leal Filho
Keyword(s):  
Waste Management ◽  
Local Community ◽  
Community Based ◽  
North Sulawesi

Community Based Psychosocial Education Can Improve Mood Disturbance in Breast Cancer Survivors at Various Stages of Their Recovery

2016 ◽  
Vol 44 (6) ◽  
pp. 730-736 ◽  
Author(s):  
Anna Kokavec
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Local Community ◽  
Psychiatric Morbidity ◽  
Behavioural Therapy ◽  
Mood Disturbance ◽  
Depression Symptoms ◽  
Community Based ◽  
Severe Group

Background: Psychosocial distress can contribute to avoidance, refusal, or discontinuation of cancer treatment, which could impact recovery and survival. Aims: The aim of the present study was to evaluate the effectiveness of a community based psychosocial program on alleviating mood disturbance in breast cancer survivors at different stages of their breast cancer journey. Method: A total of 37 women participated in an 8-week psychosocial program at their local community centre. The weekly 3-hour program was delivered in a small group format. Program components included health education, behavioural training, cognitive behavioural therapy, art therapy and stress-management. Questionnaires aimed at assessing psychiatric morbidity and mood adjustment were administered at the beginning of the program (Pre) and at the completion of the program (Post). Results: Group data revealed a significant reduction in psychiatric morbidity and improved psychological adjustment. When participants were divided into degree of psychiatric morbidity (mild, moderate, severe, very severe) a significant reduction in the reporting of anxiety symptoms in the mild, moderate, severe and very severe groups was reported; depression symptoms in the severe and very severe groups were noted, and anger, confusion and somatic symptoms in the mild group were noted. The level of activity was also significantly improved in the very severe group. Conclusions: A structured community based psychosocial program is beneficial to women struggling to come to terms with the emotional consequences of breast cancer at all stages of recovery.

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