scholarly journals Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals’ perspectives

2020 ◽  
Vol 4 (2) ◽  
Author(s):  
Joanna C Robson ◽  
Michael Shepherd ◽  
Lorraine Harper ◽  
Mwidimi Ndosi ◽  
Keziah Austin ◽  
...  
Keyword(s):  
Health Professionals ◽  
Online Survey ◽  
Connective Tissue Diseases ◽  
Psychological Support ◽  
Care Staff ◽  
Self Management ◽  
Free Text ◽  
Team Approach ◽  
Management Support ◽  
Survey Responses

Abstract Objectives CTD and systemic vasculitis impact on health-related quality of life. Treatment can be complex, involving multiple medical specialities. The aim of this study was to investigate psychological and self-management support for patients in secondary care. Methods An online survey of health professionals in the UK, including 45 multiple-choice and free-text questions, was analysed descriptively. Free-text survey responses were analysed thematically to identify health professionals’ perceptions of best practice and unmet needs. Results The online survey included 120 health professionals (34% specialist nurses, 51% doctors and 12% allied health professionals), predominantly working in rheumatology (52.9%) and nephrology (21.5%) departments. Access to self-management programmes or clinics for people with CTD or vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to ‘How well is your team providing self-management support to people with CTD or vasculitis?’, 38% of respondents reported ‘not very well’ or ‘not well at all’. Direct access to psychological support was available in 76.9% of nephrology and 32.8% of rheumatology departments. More than 80% of respondents would like additional training. Key themes from the qualitative data (free-text survey responses) included the importance of: dedicated psychological support and self-management programmes for people with CTD and vasculitis, a whole-team approach (specialist teams empowering people to manage their own care), staff training (e.g. brief psychological interventions) and signposting to resources, including patient charities. Conclusion People with CTD and vasculitis have complex needs, and improvements in self-management and psychological support are required in UK rheumatology and nephrology departments.

scholarly journals P106 Psychological and self-management support for people with systemic vasculitis or CTDs: a mixed methods study of health professionals’ perception of provision in Rheumatology and Nephrology departments in the UK

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Joanna C Robson ◽  
Michael Shepherd ◽  
Mwidimi Ndosi ◽  
Lorraine Harper ◽  
Caroline Flurey ◽  
...  
Keyword(s):  
Health Professional ◽  
Health Professionals ◽  
Online Survey ◽  
Psychological Support ◽  
Self Management ◽  
Free Text ◽  
Management Support ◽  
The Uk

Abstract Background People with a connective tissue disease (CTD) or systemic vasculititis have diseases which can be life and organ threatening, require complicated medication regimens and impact on all aspects of health-related quality of life. People are routinely managed across multiple medical specialities and have to navigate their way through complex health care systems. The aim of this study was to investigate current psychological and self-management support available for people with CTDs and vasculitis in rheumatology and nephrology departments in the UK. Methods An online survey of health professionals in rheumatology and nephrology departments was conducted with follow-up interviews. The survey comprised 45 multiple-choice and free-text questions. Quantitative material was analysed descriptively. Follow-up interviews were recorded, transcribed and analysed thematically, together with free-text survey responses, to identify health professionals’ perceptions on unmet needs and key improvements required. Results The online survey included 120 health professional respondents (34 % specialist nurses, 51% doctors and 12 % allied health professionals and pharmacists). Respondents worked primarily in rheumatology (52.9%) and nephrology (21.5%). Access to self-management programmes or clinics for people with CTD and vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to the question “How well is your team providing self-management support to people with CTD and vasculitis?”, 38% of respondents reported not very well, or not well at all. Direct access to psychological support (either within their department or within the hospital) was available for patients in 76.9% of nephrology and 32.8% of rheumatology departments. Where psychological referrals were direct, the assessment of the quality of the service by health professionals was higher than when the referrals were indirect (i.e when patients were either referred to primary care or asked to self-refer) (X2=13.83, p < 0.001). Over 80% of health-professional respondents reported they would like additional training in providing self-management support. Key themes from the qualitative data included the need for dedicated psychological support within departments, self-management programmes (specifically for people with CTD and vasculitis or opening up established programmes for people with other conditions), the benefits of a whole team approach (specialist teams not individual clinicians working to empower patients to take a lead in managing their own care), individual staff training needs ( training in brief psychological interventions and support for health professionals to set up self-management programmes) and signposting to additional resources for patients and their families ( disease-specific written and online information and support from patient charities). Conclusion People with CTD and vasculitis have complex needs and systemic improvements in support are required. Patients in nephrology departments are more likely to have access to psychological support than those in rheumatology. There is inadequate access to structured self-management programmes in both nephrology and rheumatology. Disclosures J.C. Robson None. M. Shepherd None. M. Ndosi None. L. Harper None. C. Flurey None. S. Logan None. K. Austin None. E. Dures None.

scholarly journals What are the information needs and concerns of individuals with Polycystic Kidney Disease? Results of an online survey using Facebook and social listening analysis

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Tiffany Ma ◽  
Kelly Lambert
Keyword(s):  
Social Media ◽  
Kidney Disease ◽  
Polycystic Kidney Disease ◽  
Health Professionals ◽  
Information Needs ◽  
Online Survey ◽  
Self Management ◽  
Free Text ◽  
Online Information ◽  
Polycystic Kidney

Abstract Background Polycystic Kidney Disease (PKD) is a hereditary disorder that has no cure and can result in end stage kidney failure. Searching for health information online and via social media is a common phenomenon in many medical conditions. However, no recent studies have documented the information needs, online behaviours, and concerns of people with PKD. The aim of this study was to explore the information needs of individuals with PKD and their carers by documenting (i) the information needs (ii) online information health seeking behaviours (iii) the perceived challenges of living with PKD and (iv) dietary concerns. Methods A 17-item survey was constructed by undertaking a social listening analysis. This survey was then distributed via PKD related social media groups on Facebook. Seven groups distributed the survey with permission from the group owners. Open free text survey questions were analysed thematically using content analysis. Results A total of 536 respondents completed the online survey (70.9 % female, 77 % aged 35–70, 70.2 % diagnosed more than 10 years ago). The major information need expressed by participants with PKD was for dietary information. Information regarding medications, medical management and symptom control were also desired. The overarching themes arising from the free text responses to the major challenge of living with PKD included ‘learning to navigate dietary ambiguities’; ‘managing social, psychological and emotional needs’; and ‘accepting an uncertain future’. In addition to a strong desire for practical and specific dietary information, participants expressed a need for more online information pertaining to management of fatigue, pain, complications and how to manage mental health. Online peer support was also highly regarded and desired. Conclusions This study provides contemporary insights into the type of information desired by people with PKD. The results indicated that there was a strong desire for unambiguous information and guidance from health professionals to facilitate self-management, alleviate concerns, and address the complexities of living with Polycystic Kidney Disease. While diet is an important and frequently expressed need, there also remains a large demand for information on how to support psychological needs, and on medical management in order to support treatment decision making. Future work is required to develop specific, actionable and evidence-based resources for patients that are available online and through health professionals. Increased access to renal dietitians, peer support and additional training for health professionals could also improve patient-centered care and support self-management.

scholarly journals Top 10 global educational topics in stroke: A survey by the World Stroke Organization

2019 ◽  
Vol 14 (8) ◽  
pp. 843-849
Author(s):  
Monica Saini ◽  
Sarah Belson ◽  
Carmen Lahiff-Jenkins ◽  
Peter Sandercock
Keyword(s):  
Health Professionals ◽  
Online Survey ◽  
Stroke Care ◽  
Educational Needs ◽  
Free Text ◽  
Allied Health Professionals ◽  
Middle Income ◽  
Support Organizations ◽  
The World ◽  
Survey Responses

AimAs part of a program of work to develop an educational strategy and implementation plan for the World Stroke Organization, we conducted a survey of World Stroke Organization members (health professionals, laypersons (Stroke Support Organizations)) to identify their potential educational needs.MethodsWe developed a questionnaire to identify priority educational needs in consultation with the World Stroke Organization Education Committee. The World Stroke Organization invited all individual members and associated Stroke Support Organizations to complete the questionnaire via a web-based survey. Survey responses were supplemented by questionnaires emailed directly to key persons in Stroke Support Organizations and information from semi-structured telephone interviews, where necessary. The questionnaire asked respondents to prioritize topics in diagnosis, management of acute stroke, stroke care services, stroke rehabilitation, and stroke prevention. Free-text responses were assessed with word cloud.ResultsThe online survey was completed by 264 respondents from 60 countries; 19.1% were from low- and middle-income countries, 59% were stroke specialist physicians, 28% allied health professionals or nurses, 9% Stroke Support Organizations, 4% general physicians. Fifteen Stroke Support Organizations from 11 countries responded to the emailed survey. Seven Stroke Support Organizations' members were interviewed by telephone; one was interviewed in-person. We highlight the two highest priority topics in each of the five questionnaire domains.ConclusionThe 10 priority topics were all applicable in a low- or middle-income setting: setting up and delivering stroke diagnosis, treatment, rehabilitation and prevention services, and emphasized the most basic elements of care. The survey participants have identified a number of key topics that merit inclusion in stroke teaching materials and courses, especially those aimed at practitioners working in resource-limited settings.

scholarly journals Between knowing and doing person-centredness: A qualitative examination of health professionals’ perceptions of roles in self-management support

2019 ◽  
pp. 136345931988908
Author(s):  
Marika Franklin ◽  
Karen Willis ◽  
Sophie Lewis ◽  
Anne Rogers ◽  
Lorraine Smith
Keyword(s):  
Health Professionals ◽  
Chronic Condition ◽  
Social Representations ◽  
Self Management ◽  
Clinical Aspects ◽  
Management Support ◽  
Health Capital ◽  
Clinical Interactions ◽  
Depth Interviews ◽  
Unrealistic Expectations

Self-management is a contemporary model of chronic condition care that places expectations on, and roles for, both patients and health professionals. Health professionals are expected to form partnerships with their patients, and patients are expected to be active participants in their own care. In these new roles, control and responsibility for self-management are shared between people with chronic conditions and their health professionals. We still have limited knowledge about how these new roles are enacted in self-management support. In this article, we examine how health professionals perceive the roles of patients and professionals in chronic condition self-management, drawing on Bourdieu’s concepts of field, doxa and capital. In this qualitative study, 32 in-depth interviews were conducted with 11 health professionals in Sydney, Australia. Data were analysed thematically. Three themes were derived. First, there was incongruence between how participants characterised and enacted their roles. Second, participants compartmentalised clinical and non-clinical aspects of self-management support. Finally, the roles of health professionals entwined with emotions and judgements of patienthood revealed that the provision of self-management support was linked to a fit between individuals’ cultural health capital and the expectations governing the field. We argue that ‘taken for granted’ assumptions about self-management and self-management support must be challenged to mitigate negative social representations and unrealistic expectations placed on patients and health professionals, particularly those patients with less capital, who are more marginalised within clinical interactions.

An evaluation of the self-management support capacity of providers of chronic condition primary care

2012 ◽  
Vol 18 (2) ◽  
pp. 112 ◽  
Author(s):  
Tracy E. Cheffins ◽  
Julie A. Twomey ◽  
Jane A. Grant ◽  
Sarah L. Larkins
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Health Professionals ◽  
Chronic Condition ◽  
Health Care Services ◽  
Readiness To Change ◽  
Structured Interview ◽  
Self Management ◽  
Management Support ◽  
Primary Health

Self-management support (SMS) is an important skill for health professionals providing chronic condition management in the primary health care sector. Training in SMS alone does not always lead to its utilisation. This study aimed to ascertain whether SMS is being used, and to identify barriers and enablers for SMS in practice. Health professionals who underwent SMS training were invited to participate in a semi-structured interview. A response rate of 55% (14 of 24) was achieved. All interviewees rated their understanding of the principles of SMS as moderate or better. In relation to how much they use these principles in their practice, several (5 of 14) said minimally or not at all. The tools they were most likely to use were SMART goals (8 of 14) and decision balance (5 of 14). Core skills that were being used included problem solving (11 of 14), reflective listening (13 of 14), open-ended questions (12 of 14), identifying readiness to change (12 of 14) and goal setting (10 of 14). The most important barriers to implementing SMS were current funding models for health care, lack of space and staff not interested in change. The most highly rated enabling strategies were more training for general practitioners and more training for practice nurses; the lowest rated was more training for receptionists. The increasing prevalence of chronic conditions due to ageing and lifestyle factors must be addressed through new ways of delivering primary health care services. Self-management support is a necessary component of such programs, so identified barriers to SMS must be overcome.

Emotional impact of COVID-19 preparations on metro and regional cancer workforces in Queensland Australia: "We are all in this together".

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 44-44
Author(s):  
Natasha Anne Roberts ◽  
Bryan Chan ◽  
Elizabeth Stephanie Ahern ◽  
Harry Michael Gasper ◽  
Glen Kennedy ◽  
...  
Keyword(s):  
Cancer Care ◽  
Online Survey ◽  
New Technology ◽  
Recovery Phase ◽  
Care Staff ◽  
System Response ◽  
Emotional Impact ◽  
Preparation Phase ◽  
Ancillary Staff ◽  
Survey Responses

44 Background: Australia has achieved a “flattening of the curve” with a sustained COVID-19 roadmap to recovery in place. We explored the emotional impact of COVID-19 on our cancer workforce, during the preparation phase of the pandemic. Methods: We developed and pilot-tested an online survey to capture the emotional impact on cancer care staff during the COVID-19 health system response. Two large cancer centres were identified for study sample, one metropolitan and one regional, in Queensland, Australia. All cancer care staff with patient-facing roles were invited via all-staff email to participate on a weekly basis, uniquely also including ancillary and administrative workers. The final survey questionnaire included qualitative domains with open text responses for reflections on difficult decisions and subsequent emotional impacts. At the same time, a prospective diary of organizational developments was independently maintained by two investigators in order to contextualize changing survey responses over time. Qualitative data analyses by four investigators included independent, multiple cross-coding, memos, dataset review and member-checking to ensure methodological rigour. Data were synthesised into key themes utilising the Framework Method (Gale, 2013). Results: 117 metropolitan and 59 regional staff were surveyed over a 6-week period. Participants were medical, nursing, allied health, administrative and ancillary staff, working across inpatient and outpatient oncology services. Four key themes were emergent across the trajectory of the COVID preparation phase; ‘Strategies for protection’ (self-isolation, using PPE, protecting patients, families and each other), ‘Navigating rules and keeping up’ (compliance, exceptions, conflict and complex decision fatigue), ‘Tempered optimism’ (this is grief, strategies for coping, pride in one’s place), and ‘Framing the new normal’ (using new technology, second wave, uncertainty). At different time points, one theme dominated more than others. Conclusions: Despite rapid adaptations to system changes, staff responses highlight that it was their sense of connectedness that had the greatest influence on their reflections during the COVID-19 pandemic, but also underpinned the humanistic aspects of their responses. Staff perceptions of feeling supported and prepared, permeated through the duration of the survey. Results from the recovery phase are awaited.

Web-based self-management support training for health professionals: A pilot study

2013 ◽  
Vol 90 (1) ◽  
pp. 29-37 ◽  
Author(s):  
Veronica Yank ◽  
Diana Laurent ◽  
Kathryn Plant ◽  
Kate Lorig
Keyword(s):  
Pilot Study ◽  
Health Professionals ◽  
Self Management ◽  
Management Support ◽  
Web Based

scholarly journals “Blaming, shaming, humiliation”: Stigmatising medical interactions among people with non-epileptic seizures

2017 ◽  
Vol 2 ◽  
pp. 55 ◽  
Author(s):  
Catherine Robson ◽  
Olaug S. Lian
Keyword(s):  
Health Professionals ◽  
Epileptic Seizures ◽  
Quality Of Healthcare ◽  
Social Constructionist ◽  
Free Text ◽  
Negative Experiences ◽  
Health And Illness ◽  
Survey Responses ◽  
Study Participants

Background: People with non-epileptic seizures (NES) describe challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience difficult healthcare encounters. Methods: Using a thematic discourse analysis approach, we analysed the free-text survey responses of 135 people with NES and asked: what kind of challenges do people living with this condition encounter when interacting with health professionals, and how do they experience the consequences of difficult interactions? We explore their experiences by interpreting the latent meaning of participants’ texts from a social-constructionist perspective on health and illness. Results: The overarching narrative depicts a fundamental breakdown in patient-provider relationships. According to our data, the negative experiences of study participants emerge from more than practitioners’ lack of awareness of NES and access to information about the condition - to the extent that it is available. In examining the challenges people with NES encounter when interacting with health professionals, their main experiences centre on blame and humiliation. When exploring their experiences, theories of stigma serve as a useful theoretical framework. Conclusions: Normative judgements arising from psychogenic understandings of NES are stigmatising and restrict professional displays of respectful (patient-centred) care. Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals. Perceived to lack medical, moral and credible status, participants describe practitioners who treat them with disrespect, and some recount conduct that defies all ethical and professional obligations and standards. These encounters can have wide-ranging adverse consequences for patients: emotionally, physically, and for their future healthcare. The quality of healthcare interactions for people with NES requires urgent improvements. In addition to increased awareness of the condition, practitioners need to be conscious of making and acting on adverse moral appraisals when interacting with this patient group.

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