scholarly journals Patient support groups: A survey of United Kingdom practice, purpose and performance

2020 ◽  
pp. 175114372095201
Author(s):  
Jeremy Groves ◽  
Julie Cahill ◽  
Gordon Sturmey ◽  
Mo Peskett ◽  
Dorothy Wade ◽  
...  

Background Critical care survivors face physical, psychological and socio-economic burdens. Peer support is acknowledged as a way individuals can face, accept and overcome the challenges arising from a stressful event. We sought to examine the provision and benefits of peer support to critical care survivors in the UK. Method We distributed a survey, devised by the patients and relatives committee of the Intensive Care Society and ICUsteps, to contacts in 163 UK Trusts/hospitals with critical care departments. The benefit to individuals was assessed by seeking the views of attendees of two support groups. Results A response was received from 91 (56%) of the critical care departments. Of these, 46 (48% of respondents) have patient support groups. Our analysis of comments from 30 people is that support groups greatly benefit service users and staff. Conclusions Attendees of patient support groups gave highly positive comments about the service yet provision of patient support groups in the UK is not universal. Recommendations We make a series of recommendations for consideration by UK health care providers.

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1279.1-1279
Author(s):  
Z. Rutter-Locher ◽  
J. Galloway ◽  
H. Lempp

Background:Rheumatological diseases are common in Sub-Saharan Africa [1] but specialist healthcare is limited and there are less than 150 rheumatologists currently serving 1 billion people in Sub-Saharan Africa [2]. Rheumatologists practising in the UK NHS are likely to be exposed to migrant patients. There is therefore, an unmet need for health care providers to understand the differences in rheumatology healthcare provision between Sub-Saharan Africa and the UK and the barriers which migrants face in their transition of rheumatology care.Objectives:To gain an understanding of the experiences of patients with rheumatological conditions, about their past healthcare in Sub-Saharan Africa and their transition of care to the UK.Methods:A qualitative study using semi-structured interviews was conducted. Participants were recruited from two rheumatology outpatient clinics in London. Thematic analysis was applied to identify key themes.Results:Seven participants were recruited. Five had rheumatoid arthritis, one had ankylosing spondylitis and one had undifferentiated inflammatory arthritis. Participants described the significant impact their rheumatological conditions had on their physical and emotional wellbeing, including their social and financial implications. Compared to the UK, rheumatology healthcare in Sub-Saharan Africa was characterised by higher costs, limited access to specialists, lack of investigations and treatments, the use of traditional medicines and poor communication by clinicians. Barriers to transition of rheumatology care to the UK were: poor understanding of rheumatological conditions by the public and primary care providers, lack of understanding of NHS entitlements by migrants, fear of data sharing with immigration services and delayed referral to specialist care. Patient, doctor and public education were identified by participants as important ways to improve access to healthcare.Conclusion:This study has described, for the first time, patients’ perspectives of rheumatology health care in Sub-Saharan Africa and the transition of their care to the UK. These initial findings allow healthcare providers in the UK to tailor management for this migrant population and suggests that migrants need more information about their NHS entitlements and specific explanations on what non-clinical data will be shared with immigration services. To increase access to appropriate care, a concerted effort by clinicians and public health authorities is necessary to raise awareness and provide better education to patients and migrant populations about rheumatological conditions.References:[1]G. Mody, “Rheumatology in Africa-challenges and opportunities,” Arthritis Res. Ther., vol. 19, no. 1, p. 49, 2017.[2]M. A. M. Elagib et al., “Sudan and Sweden Active Rheumatoid Arthritis in Central Africa: A Comparative Study Between,” J. Rheumatol. J. Rheumatol. January, vol. 43, no. 10, pp. 1777–1786, 2016.Acknowledgments:We are grateful to the patients involved in this study for their time and involvement.Disclosure of Interests:None declared


2020 ◽  
Vol 136 (1) ◽  
pp. 39-46
Author(s):  
Joanna G. Katzman ◽  
Laura E. Tomedi ◽  
Karla Thornton ◽  
Paige Menking ◽  
Michael Stanton ◽  
...  

Project ECHO (Extension for Community Healthcare Outcomes) at the University of New Mexico is a telementoring program that uses videoconferencing technology to connect health care providers in underserved communities with subject matter experts. In March 2020, Project ECHO created 10 coronavirus disease 2019 (COVID-19) telementoring programs to meet the public health needs of clinicians and teachers living in underserved rural and urban regions of New Mexico. The newly created COVID-19 programs include 7 weekly sessions (Community Health Worker [in English and Spanish], Critical Care, Education, First-Responder Resiliency, Infectious Disease Office Hours, and Multi-specialty) and 3 one-day special sessions. We calculated the total number of attendees, along with the range and standard deviation, per session by program. Certain programs (Critical Care, Infectious Disease Office Hours, Multi-specialty) recorded the profession of attendees when available. The Project ECHO research team collected COVID-19 infection data by county from March 11 through May 31, 2020. During that same period, 9765 health care and general education professionals participated in the COVID-19 programs, and participants from 31 of 35 (89%) counties in New Mexico attended the sessions. Our initial evaluation of these programs demonstrates that an interprofessional clinician group and teachers used the Project ECHO network to build a community of practice and social network while meeting their educational and professional needs. Because of Project ECHO’s large reach, the results of the New Mexico COVID-19 response suggest that the rapid use of ECHO telementoring could be used for other urgent national public health problems.


2018 ◽  
Author(s):  
Monica Strand ◽  
Deede Gammon ◽  
Lillian Sofie Eng ◽  
Cornelia Ruland

BACKGROUND Peer support groups for people with long-term mental health problems are at the heart of recovery-oriented approaches in mental health care. When conducted face-to-face (offline) or on the Internet (online), peer support groups have proven to have differing strengths and weaknesses. Little is known about the benefits and challenges of combining the two formats. OBJECTIVE The aim of this study was to gain insights into the benefits and challenges of combining online and offline peer support groups facilitated through an Internet intervention designed to support recovery processes. METHODS In this exploratory and descriptive study, an e-recovery portal called ReConnect was used by service users in two mental health communities in Norway for 6-12 months. The portal included an online peer support forum which also facilitated participation in local in-person ReConnect-cafés. Both formats of peer support were facilitated by an employed service user consultant with lived experience of mental health problems and with training in peer support. Qualitative data about service users’ experiences of using the portal were collected through focus groups and individual interviews and inductively analyzed thematically with focus on benefits and challenges of peer support online and offline. RESULTS A total of 14 service users 22-63 years of age with various diagnoses, receiving services at both primary and specialist levels of mental health care participated in three focus groups and 10 individual interviews. Two main themes were identified in the analysis: 1) balancing anonymity and openness, and 2) enabling connectedness. These themes are further illustrated with the subthemes: i) dilemmas of anonymity and confidentiality, ii) towards self-disclosure and openness, iii) new friendships, and iv) networks in the local community. Three of the subthemes mainly describe benefits. Challenges were more implicit and cut across the subthemes. Identified challenges were linked to transitions from anonymity to revealing one’s identity, how to protect confidentiality, or to participation at face-to-face meetings in the local community. CONCLUSIONS Our study suggests that online peer support groups and offline meetings complement each other, and the combination is mainly beneficial to users. The identified benefits appeared to arise from participants’ options of one format or the other, or that they could combine formats in ways that suited their individual values and comfort zones. We also identified challenges related to combination of formats, and both formats require appropriate facilitation of peer support. Combining online formats that enable anonymity, a non-judgmental atmosphere, and 24/7 accessibility regardless of location, with offline formats that foster local, in-person community ties, is a promising concept for facilitating recovery-oriented care, and warrants continued research.


2020 ◽  
Vol 13 (1) ◽  
pp. 441-446
Author(s):  
Sedighe S. T. Far ◽  
Milad A. Marzaleh ◽  
Nasrin Shokrpour ◽  
Ramin Ravangard

Background: Iran is a disaster-prone country in which many natural and man-made disasters happen every year. Because the health sector is vital due to its nature of treatment and rehabilitation of the injured after the disasters, all health care providers, especially hospital nurses, should be prepared to provide the services they need. Objective: The present study aimed to determine the level of knowledge, attitude, and performance of nurses about disaster management in teaching hospitals affiliated to Iran, Shiraz University of Medical Sciences in 2019. Methods: This cross-sectional and descriptive-analytical study was conducted on a sample of 230 nurses working in the teaching hospitals of Iran, Shiraz University of Medical Sciences, who were selected using the stratified sampling proportional to size and simple random sampling methods. The data were collected using a valid and reliable questionnaire containing 20 questions in three dimensions of knowledge, attitude, and performance. Then, the collected data were analyzed using SPSS 25.0 through independent samples t-test, ANOVA and Tukey tests at the significance level of 5%. Results: The results showed that the highest and lowest mean scores were related to the attitude (2.38±0.19) and knowledge (1.70±0.50) of the nurses, respectively. However, all three dimensions were at a moderate level. The results showed significant relationships between the mean score of performance and the gender, marital status, age, and work experience of the nurses. In addition, statistically significant relationships were found between the mean score of knowledge and their age and work experience (p<0.05). Conclusion: According to the findings, the following suggestions can be made to increase the knowledge and performance of the nurses for being prepared in critical situations: reducing the duration and increasing the quality of training classes and workshops on disaster preparedness; providing some incentives for nurses, especially female, married, older, and more experienced ones to attend these classes; and improving the methods of training materials related to disaster management.


2020 ◽  
Author(s):  
A Ker ◽  
Gloria Fraser ◽  
Antonia Lyons ◽  
C Stephenson ◽  
T Fleming

© 2020 CSIRO Publishing Journal Compilation © Royal New Zealand College of General Practitioners 2020 This is an open access article licensed under a. INTRODUCTION: Primary health care providers are playing an increasingly important role in providing gender-affirming health care for gender diverse people. This article explores the experiences of a primary care-based pilot clinic providing gender-affirming hormone therapy in Wellington, New Zealand. AIM: To evaluate service users' and health professionals' experiences of a pilot clinic at Mauri Ora (Victoria University of Wellington's Student Health and Counselling Service) that provided gender-affirming hormones through primary care. METHODS: In-depth interviews were conducted with four (out of six) service users and four health professionals about their perspectives on the clinic. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Three themes were identified in service users' interviews, who discussed receiving affirming care due to the clinic's accessibility, relationship-centred care and timeliness. Three themes were identified in the health professionals' interviews, who described how the clinic involves partnership, affirms users' gender and agency, and is adaptable to other primary care settings. Both service users and health professionals discussed concerns about the lack of adequate funding for primary care services and the tensions between addressing mental health needs and accessing timely care. DISCUSSION: The experiences of service users and health professionals confirm the value of providing gender-affirming hormone therapy in primary care. Models based in primary care are likely to increase accessibility, depathologise gender diversity and reduce wait times.


2020 ◽  
Vol 29 (4) ◽  
pp. e81-e91
Author(s):  
Renea L. Beckstrand ◽  
Jasmine B. Jenkins ◽  
Karlen E. Luthy ◽  
Janelle L. B. Macintosh

Background Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined. Objective To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time. Methods In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999. Results Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient’s end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design. Conclusions The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.


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