scholarly journals The Pain at Work Toolkit for Employees with Chronic or Persistent Pain: A Collaborative-Participatory Study

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 56
Author(s):  
Holly Blake ◽  
Sarah Somerset ◽  
Sarah Greaves
Keyword(s):  
Participatory Design ◽  
Online Survey ◽  
Management Strategies ◽  
Work Capacity ◽  
Persistent Pain ◽  
Self Management ◽  
Evidence Based ◽  
Or Education ◽  
Management Tools ◽  
Stakeholder Consultation

Self-management tools for people with chronic or persistent pain tend to focus on symptom reporting, treatment programmes or exercise and do not address barriers to work, facilitators of work ability, or workplace pain self-management strategies. We developed the Pain at Work (PAW) toolkit, an evidence-based digital toolkit to provide advice on how employees can self-manage their pain at work. In a collaborative-participatory design, 4-step Agile methodology (N = 452) was used to co-create the toolkit with healthcare professionals, employers and people with chronic or persistent pain. Step 1: stakeholder consultation event (n = 27) established content and format; Step 2: online survey with employees who have persistent pain (n = 274) showed employees fear disclosing their condition, and commonly report discrimination and lack of line manager support. Step 3: online employer survey (n = 107) showed employers rarely provide self-management materials or education around managing pain at work, occupational health recommendations for reasonable adjustments are not always actioned, and pain-related stigma is common. Step 4: Toolkit development integrated findings and recommendations from Steps 1–3, and iterative expert peer review was conducted (n = 40). The PAW toolkit provides (a) evidence-based guidelines and signposting around work-capacity advice and support; (b) self-management strategies around working with chronic or persistent pain, (c) promotion of healthy lifestyles, and quality of life at work; (d) advice on adjustments to working environments and workplace solutions to facilitate work participation.

20 International online survey of 1162 individuals with functional neurological disorder: demographics, symptom comorbidities, self- management strategies, and illness beliefs

2020 ◽  
Vol 91 (8) ◽  
pp. e16.1-e16
Author(s):  
Matthew Butler ◽  
Mathieu Seynaeve ◽  
Susannah Pick ◽  
James Rucker ◽  
Timothy Nicholson
Keyword(s):  
Neurological Disorder ◽  
Online Survey ◽  
Management Strategies ◽  
Self Management ◽  
Patient Questionnaire ◽  
Symptom Duration ◽  
Illness Beliefs ◽  
Alternative Treatments ◽  
Wide Range ◽  
Functional Neurological Disorder

AimsFunctional neurological disorder (FND) is common and often severe. It is poorly understood, and there have been no international large-scale studies of self- management and illness beliefs in FND. We created a patient questionnaire to assess FND demographics, symptom comorbidity, self-management strategies (particularly in relation to prohibited substances), views on novel treatments, and illness beliefs.MethodsThe questionnaire was shared open access over a three-week period.Participants were recruited internationally through social media and patient groups. RESULTS: In total, 1162 respondents from 16 countries took the survey. Of these, 98% reported a formal diagnosis of FND from a consultant neurologist or other suitably trained clinician. Females constituted 86% of respondents, with an average age of 41.7 years (SD=12.50). Mean symptom duration was 7.69 years (SD=9.37) and average time from diagnosis was 2.24 years (SD=3.35), indicating a diagnostic lag of over 5 years. Symptom comorbidity was very high, with respondents reporting current: seizures (50%), gait disturbance (76%), loss of balance (77%), tremors (61%), muscle jerks/spasms (65%), altered sensations (79%), speech difficulties (65%), memory problems (80%), fatigue (93%), and headache (70%). Current psychiatric comorbidities – depression (43%), anxiety (51%), panic (20%), and PTSD (22%) - were also common. Illness beliefs varied, with respondents agreeing most strongly that FND is a combination of physical and stress/trauma-related factors. Respondents rated FND as having a severe effect on their life, with little control felt over their symptoms. Respondents had received a wide range of medical interventions, and many had tried alternative treatments. Prohibited substances such as cannabis, ketamine, and psychedelics had been used by 15% of respondents, with the majority experiencing no or minimal physical (90%) and psychological (95%) sequelae. Many respondents reported that they would be willing to try medically supervised psychedelic therapy if it was found to be safe and effective.ConclusionsThis large international online survey of FND patients indicated a striking co-occurrence of multiple symptoms. As expected, respondents reported that FND severely impacted on their lives, and many had lived with symptoms, which are not well managed by current medical therapies, for years. There was interest in novel putative treatments, such as medically supervised psychedelic therapies, which indicates a strong need to investigate alternative treatments for this poorly served patient group.

The Development of an Internet-Based Decision Coaching Guide to Encourage Audiology Care: The Results of a Participatory Design Approach

2020 ◽  
Vol 29 (3S) ◽  
pp. 546-563
Author(s):  
Rebecca S. Burden ◽  
Laura N. Galloway ◽  
Ann M. Rothpletz ◽  
Keira A. Glasheen ◽  
Jill E. Preminger
Keyword(s):  
Hearing Loss ◽  
Participatory Design ◽  
Management Strategies ◽  
Self Management ◽  
Online Program ◽  
Multiple Stakeholders ◽  
Multiple Focus ◽  
Study Team ◽  
Program Content ◽  
Stakeholder Input

Purpose The purpose of the research described here is to create a theoretically based, interactive online program to motivate adults with untreated hearing loss to seek audiology care. We describe the results of the participatory design (PD) approach used to increase uptake and adherence to the Internet-based program. Method Using information gathered from field experts ( n = 7), a program outline was generated by the study team. In keeping with PD principles, multiple focus groups and panels consisting of persons with hearing loss ( n = 26), frequent communication partners ( n = 6), audiologists ( n = 9), and other area experts ( n = 16) revised and expanded both content and design of the program in an iterative fashion. Results The proposed program was modified multiple times based on the input of stakeholders throughout the PD process. In particular, the scope of the program shifted from focusing on self-management strategies to decision coaching regarding the choice to visit an audiologist. Other specific program content and activities were modified based on stakeholder input. Conclusions The program evolved dramatically through the influence and input of multiple stakeholders as a result of the implementation of PD principles.

scholarly journals Evaluation of Self-Management Support Functions in Apps for People With Persistent Pain: Systematic Review (Preprint)

2018 ◽  
Author(s):  
Hemakumar Devan ◽  
Devin Farmery ◽  
Lucy Peebles ◽  
Rebecca Grainger
Keyword(s):  
Pain Management ◽  
Rating Scale ◽  
Mobile Apps ◽  
Management Strategies ◽  
Persistent Pain ◽  
Self Management ◽  
Management Support ◽  
Smartphone Apps ◽  
Management Skills ◽  
Pain Diary

BACKGROUND Smartphone apps are a potential mechanism for development of self-management skills in people with persistent pain. However, the inclusion of best-practice content items in available pain management apps fostering core self-management skills for self-management support is not known. OBJECTIVE The aim of the study was to evaluate the contents of smartphone apps providing information on pain management strategies for people with persistent pain facilitating self-management support and to appraise the app quality. METHODS A systematic search was performed in the New Zealand App Store and Google Play Store. Apps were included if they were designed for people with persistent pain, provided information on pain self-management strategies, and were available in English. App contents were evaluated using an a priori 14-item self-management support (SMS-14) checklist. App quality was assessed using the 23-item Mobile Apps Rating Scale. RESULTS Of the 939 apps screened, 19 apps met the inclusion criteria. Meditation and guided relaxation were the most frequently included self-management strategies. Overall, the included apps met a median of 4 (range 1-8) of the SMS-14 checklist. A total of 3 apps (Curable, PainScale-Pain Diary and Coach, and SuperBetter) met the largest number of items (8 out of 14) to foster self-management of pain. Self-monitoring of symptoms (n=11) and self-tailoring of strategies (n=9) were frequently featured functions, whereas a few apps had features facilitating social support and enabling communicating with clinicians. No apps provided information tailored to the cultural needs of the user. The app quality mean scores using Mobile Apps Rating Scale ranged from 2.7 to 4.5 (out of 5.0). Although use of 2 apps (Headspace and SuperBetter) has been shown to improve health outcomes, none of the included apps have been evaluated in people with persistent pain. CONCLUSIONS Of the 3 apps (Curable, PainScale-Pain Diary and Coach, and SuperBetter) that met the largest number of items to support skills in self-management of pain, 2 apps (PainScale-Pain Diary and Coach and SuperBetter) were free, suggesting the potential for using apps as a scalable, wide-reaching intervention to complement face-to-face care. However, none provided culturally tailored information. Although 2 apps (Headspace and SuperBetter) were validated to show improved health outcomes, none were tested in people with persistent pain. Both users and clinicians should be aware of such limitations and make informed choices in using or recommending apps as a self-management tool. For better integration of apps in clinical practice, concerted efforts are required among app developers, clinicians, and people with persistent pain in developing apps and evaluating for clinical efficacy.

scholarly journals Self-management strategies amongst Australian women with Endometriosis: a national online survey

2019 ◽  
Vol 6 ◽  
pp. S5-S6
Author(s):  
Mike Armour ◽  
Justin Sinclair ◽  
Jane Chalmers ◽  
Caroline Smith
Keyword(s):  
Online Survey ◽  
Management Strategies ◽  
Self Management

‘I think there is nothing . . . that is really comprehensive’: healthcare professionals’ views on recommending online resources for pain self-management

2020 ◽  
pp. 204946372097826
Author(s):  
E Areli ◽  
HK Godfrey ◽  
MA Perry ◽  
D Hempel ◽  
B Saipe ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Cultural Beliefs ◽  
Persistent Pain ◽  
Online Resources ◽  
Self Management ◽  
Evidence Based ◽  
Online Information ◽  
Two Phase ◽  
Face To Face ◽  
Individual Interviews

Objectives: To explore healthcare professionals’ views on, and attitudes, towards recommending online resources for persistent pain self-management. Methods: This study was the qualitative phase of a two-phase mixed method study. Thirty-one New Zealand health professionals involved in the management of persistent pain were interviewed via focus groups and individual interviews. Data were analysed using the general inductive approach. Results: The major themes were as follows: (1) risks and limits of online information outweigh benefits, (2) a blended model, of online resources with healthcare professional support, could work, (3) only trustworthy resources can be recommended, (4) need for personalisation and (5) perceived barriers to adoption. Conclusion: Online resources were perceived as a useful adjunct to support pain self-management; however, due to potential risks of misinterpretation and misinformation, healthcare professionals proposed a ‘blended model’ where curated online resources introduced during face-to-face consultations could be used to support self-management. Participants needed ‘trustworthy online resources’ that provide evidence-based, updated information that is personalised to clients’ health literacy and cultural beliefs. Practice implications: Training for healthcare professionals on critical appraisal of online resources or curation of evidence-based online resources could increase recommendation of online resources to support pain self-management as an adjunct to in-person care.

scholarly journals The treatment of sleep problems in autistic adults in the United Kingdom

Autism ◽  
2021 ◽  
pp. 136236132110072
Author(s):  
Elizabeth Halstead ◽  
Emma Sullivan ◽  
Zoe Zambelli ◽  
Jason G Ellis ◽  
Dagmara Dimitriou
Keyword(s):  
United Kingdom ◽  
Sleep Quality ◽  
Online Survey ◽  
Sleep Problems ◽  
Management Strategies ◽  
Self Management ◽  
Poor Sleep ◽  
The United Kingdom ◽  
Autistic Adults ◽  
Sleep Treatment

Sleep problems are one of the most common complaints in autistic adults. This study aimed to report the perspectives of autistic adults in the United Kingdom on treatment of their sleep problems. A total of 288 autistic adults living in the United Kingdom completed an online survey including assessments of their sleep quality using the Pittsburgh Sleep Quality Index, reporting their experiences and preferences of sleep treatment with UK healthcare professionals and, their experiences of self-management of their sleep. Self-report data revealed 58% of participants had not attended a consultation with a healthcare professional regarding their sleep problem despite 90% meeting the criteria for poor sleep quality (based on the Pittsburgh Sleep Quality Index). Of the participants who attended a consultation for their sleep, 72% were prescribed medication and 60% were not satisfied with the outcome. Self-management of sleep problems was not effective for 80% of participants; 41% reported a preference for non-medication options such as education, advice and talking therapies for sleep treatment. This report highlights the need for a fundamental shift in the consideration of sleep problems in autistic adults given the high levels of co-morbidity. The development of successful management strategies in adulthood that importantly considering autistic adults’ preferences could reduce sleep problems and overall improve quality of life for autistic adults. Long term this could also reduce the need for prescribed medication in this population. Lay abstract Sleep problems are one of the most common complaints by autistic adults. This study aimed to report the perspectives of autistic adults on treatment of their sleep problems; 288 autistic adults living in the United Kingdom completed an online survey which assessed their sleep quality. We also gathered data on experiences and preferences of sleep treatment with UK healthcare professionals and their experiences of self-management of their sleep; 58% of autistic adults never had a visit with a healthcare professional regarding their sleep problem, despite 90% meeting the criteria for poor sleep quality. Some of those who attended a consultation for their sleep were prescribed medication (72%), but 60% were not satisfied with the outcome. The participants also reported that sleep self-management was not effective (80%); 41% reported a preference for non-medication including education, advice and talking therapies for sleep treatment. This report highlights the need for a fundamental shift in treatment of sleep problems in autistic adults. The current treatments are not resolving sleep issues; hence, it is imperative to develop management strategies that considers autistic adults’ preferences, reduces sleep problems and thus improves quality of life for autistic adults.

scholarly journals Impact of guideline awareness in public pharmacies on counseling of patients with acute or chronic constipation in a survey of pharmacy personnel

2020 ◽  
Author(s):  
Marion Eberlin ◽  
Sabine Landes ◽  
Doerthe Biber-Feiter ◽  
Martin C. Michel
Keyword(s):  
Chronic Constipation ◽  
Online Survey ◽  
Healthcare Professionals ◽  
Treatment Recommendations ◽  
National Guideline ◽  
Self Management ◽  
Evidence Based ◽  
Sodium Picosulfate ◽  
Pharmacy Technicians ◽  
Knowledge And Attitude

Abstract Background: Constipation is often self-managed by patients and guidelines are available to aid healthcare professionals in the counseling of patients for self-management. Therefore, we have explored the knowledge and attitude of pharmacy personnel towards guidelines for the management of acute and functional chronic constipation and how they affects their recommendations.Methods: An online survey was conducted among 201 pharmacists and pharmacy technicians from an existing panel. They were presented with two typical cases, a 62-year old woman with functional chronic constipation and a 42-year old woman with travel plans. For each case, they were asked about their treatment recommendations and the underlying rationale. Thereafter, they were provided with contents from an applicable national guideline and asked again about their recommendations and the underlying rationale. In line with the exploratory nature, data were analyzed in a descriptive manner only. Results: Before exposure to guideline content, the most frequent recommendations for chronic constipation were macrogol, fiber and lactulose and for acute constipation sodium picosulfate, bisacodyl and enemas. Following guideline exposure, the most frequent recommendations for chronic constipation were macrogol, bisacodyl and sodium picosulfate and for acute constipation bisacodyl, sodium picosulfate and macrogol (all three equally recommended by the guideline for the management of acute and chronic constipation). Correspondingly, the rationale behind the recommendations shifted with guideline conformity becoming a leading reason.Conclusions: Awareness of the content of an applicable guideline on the management of constipation was poor among pharmacy personnel. Accordingly, recommendations in many cases were not in line with the guideline. Greater awareness of guideline content is desirable to enable more evidence-based recommendations in the management of constipation.

scholarly journals Dietary practices of women with Endometriosis: a cross-sectional survey

2021 ◽  
Author(s):  
Mike Armour ◽  
Alexandra Middleton ◽  
Siew Lim ◽  
Justin Sinclair ◽  
David Varjabedian ◽  
...  
Keyword(s):  
Online Survey ◽  
Management Strategies ◽  
Gastrointestinal Symptoms ◽  
Community Setting ◽  
Self Management ◽  
Cross Sectional Survey ◽  
Dietary Practices ◽  
Cross Sectional ◽  
Fodmap Diet ◽  
Dietary Strategies

Abstract Background: Endometriosis causes deleterious effects on the lives of sufferers across multiple domains impacting quality of life. Commonly utilised pharmaceutical interventions offer sub-optimal efficacy in addition to potentially intolerable side effects for many women. There is some evidence for dietary therapies reducing endometriosis symptoms but little data on dietary preferences / strategies used, and their impact, in a community setting. Methods: A cross-sectional online survey was conducted between October and December 2017 to investigate the self-management strategies employed by women with endometriosis. Participants were aged 18-45 years, living in Australia and had a surgically confirmed diagnosis of endometriosis. Results: Four hundred and eighty-four responses were included for analysis, with 76% of women reporting the use of general self-management strategies within the last six months. Of these, 44% of respondents reported using dietary strategies for symptom management. Reducing or eliminating gluten, reducing or eliminating dairy and the low FODMAP diet were the most commonly reported dietary strategies utilised. Respondents reported a 6.4/10 effectiveness score for reduction in pelvic pain with dietary changes, with no difference in pain reduction between the various diets used. Further, women self-reported significant improvements in co-morbidities such as gastrointestinal disturbance (39%), nausea and vomiting (15%) and fatigue (15%).Conclusions: Dietary modifications are a very common self-management strategy employed by people with endometriosis, with the greatest benefit reported on gastrointestinal symptoms. Reducing or eliminating gluten, dairy or FODMAPs, or a combination of these, were the most common strategies. No single diet appeared to provide greater self-reported benefits than others.

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