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. ResWearchers 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.
Reference
Blake, H.; Somerset, S.; Greaves, S. The Pain at Work Toolkit for Employees with Chronic or Persistent Pain: A Collaborative-Participatory Study. Healthcare 2022, 10, 56. https://doi.org/10.3390/healthcare10010056
Chronic or persistent pain affects between one-third and one-half of the population of the United Kingdom (UK), corresponding to just under 28 million adults. The aim of the study was to develop an evidence-based online toolkit to provide advice on how employees with any chronic or persistent pain condition can self-manage their condition at work. Toolkit development involved co-creation activities together with an interdisciplinary stakeholder group and expert review panel with members from the public, private and third sector. Researchers were to (i) consult with a wider range of stakeholders to establish content and format of the toolkit; (ii) identify employer provisions and challenges relating to supporting employees with chronic or persistent pain; (iii) identify key challenges and support needs of employees with chronic or persistent pain; (iv) conduct iterative expert peer review to complete co-creation of a final toolkit which would be appropriate for use by any employee across all organisation types and size.
“Inability to have flexible working to help me manage my health and still do my role, not everyone needs to be in the office every day”.
“I share a workspace, so the fact that I have to adjust the chair, computer etc every shift, rather than having a permanent set up, can be difficult”.
“Going to meetings when I can’t have the right support. I need back support and a footrest then I’m fine, but meeting rooms usually have awful chairs-no back support and impossible to reach the floor. I also couldn’t hot desk as I need too many personal accessories, like a back rest, special mouse and keyboard, footrest”.
“I got pain and swelling in my wrists which can make typing and scrolling on computers difficult. I often have to stop writing which delays my work”.
“Continuing to meet my daily obligations, no matter how much pain I am in that day or that week. Hard sometimes to keep up a cheery exterior”.
“Not having a work life balance-putting too much energy into work and not leaving energy for fun or anything else…trying not to show how hard I work to prove I can still do it”.
“The sporadic nature of living with a long-term health condition… I can have periods of months with few problems and then a flare up which requires hospital treatment”.
“Some days can be much worse in terms of pain and the impact is greater”.
“Each day is changeable. I might be having a good day and able to meet some of the more physical elements of my role one day, then the next be struggling even with less active tasks”.
“Others not understanding that because you don’t ‘look in pain’ you must be a whinger or making it up. Fear if you admit how much pain you are in, they will fire you or retire you or you won’t get promotions”.
“Having a suitable ergonomic desk and chair has made a massive difference, but it has been challenging when colleagues have not appreciated how necessary or important these items are to me”.
“I work in large open plan office and if you ask for adjustments the other people in the office will complain and senior management will blame me for it”.
“I feel I have to apologise for being in pain. My job does not get adapted and I feel that if I make too much of an issue I will lose my employment, especially in these times”.
“[there is a] lack of clarity around how pain related sick leave would be managed in line with current HR policy”.
“Sickness absence policy isn’t set up for people with chronic or persistent pain”.
Rigorous development processes and engagement of stakeholders is essential for development of a high-quality intervention. In a collaborative-participatory design, researchers used an Agile Methodology approach as used in other published evaluations of workplace digital interventions, to develop a digital intervention to support people at work with chronic or persistent pain. The study took place at a higher education institution in England. Development followed a 4-step process (N = 450): (Step 1) a stakeholder consultation event (
“At work I have access to a standing desk and ergonomic chair. Since the pandemic hit, I’m working from home all the time, but I have no access to those”.
“Currently, I am on slightly reduced hours as I don’t have all my reasonable adjustments at home, but I am still completing the same work as I would in full-time hours”.
“Recent changes for COVID-19 mean I am now full time from home and coping extremely well”.
“My health has improved massively since lock down as I can start later and work later on days when pain and stiffness are too hard in the morning”.
“I work from home and do not work set hours, which means I can work around my pain, even working from bed when necessary”.
“The only thing which would make a work situation better is for there to be better understanding and training that chronic or persistent pain conditions are invisible and fluctuating. That would avoid some difficult conversations”.
“Educate people that not all disabilities are visible and that many of us live with conditions which are life limiting. It’s not our choice”.
“I have been provided with adapted workspace but was reminded of this repeatedly at staff meetings that it had eaten into budget”.
“Emotional support, reasonable adjustments, open environment to talk about it without me feeling embarrassed intimidated or un
= 27); (Step 2) an online survey with employees who have persistent pain (
comfortable or that I’m n
= 274, 18–65 years); (Step 3) an online survey with employers (
ot pullin
= 107; 45 SMEs (Small to Medium Enterprises), 62 large organisations); (Step 4) toolkit development with iterative expert peer review (
g my weight or that I can
= 40, 13M; 27F). The 4 steps involved stakeholders from academia, healthcare and industry, as well as people with lived experience of chronic or persistent pain. Consultation activities and online survey questions were developed by the research team and were intended to inform toolkit development. Current Agile approach utilised principles of Kanban methodology in which steps 1–3 produced lists of toolkit and development tasks (allowing us to draw from a backlog) and the product (the Pain at Work (PAW) toolkit) was released to reviewers with each update, enabling iterative review. The description of the toolkit aligns with the Template for Intervention Description and Replication (TIDieR) Checklist). The project team had expertise in participatory approaches for digital intervention development and Agile methodology. The study was conducted according to the guidelines of the Declaration of Helsinki and was classed as educational development and evaluation by the Research Ethics Committee of the University of Nottingham Faculty of Medicine and Health Sciences.
’t do my job”.
“I am a medical doctor…before I had chronic or persistent pain it never occurred to me that there is so much ignorance and prejudice about chronic or persistent pain”.
“…Line managers ignoring the recommendations from the occupational health team…Delays in the approval and delivery of disability equipment”.
“‘anecdotal comments-Does she need a chair when a cushion will do?’ or ‘If she can’t drive long distances what’s wrong with stopping to stretch her legs?’”
“In a small company, the hardest thing is cover if someone is absent from work. People don’t tend to take sick days as they don’t want to let people down”.
“I thought we didn’t have anyone with chronic or persistent pain, but this did make me think about types of pain that are less visible, and as a leader it’s about being sensitive to that and knowing that people might be struggling but might not disclose it, in case they let you down. So, the biggest challenge is probably feeling safe to disclose health issues”.
To current knowledge, the PAW toolkit is the first accessible, digital resource to support employees at work who have chronic or persistent pain. It is publicly accessible, free to use and was developed through a rigorous, participatory design process involving surveys, consultations and peer review, engaging employees who live with chronic or persistent pain, employers and stakeholders with expertise in workplace issues and/or the management of pain. The toolkit is perceived to be relevant to employees from any size or type of organisation and addresses a clear need identified through review of evidence, stakeholder consultation and surveys with employees and employers.
Efforts to support self-management of chronic or persistent pain are increasingly important, particularly due to the global work impacts of the COVID-19 pandemic. Employers do not currently routinely provide guidance or support for staff with chronic or persistent pain. The PAW toolkit is a new resource to support employees with managing chronic pain at work, co-created with healthcare professionals, employers, and people with persistent pain. The PAW toolkit can be widely implemented to support employees with chronic or persistent pain in the workplace. Disability policies alongside line manager education and training are recommended to foster a psychological safe work environment, maximise employee support and facilitate appropriate actions. Further research could explore the impact of the PAW toolkit on employee pain, wellbeing and support, and organisational outcomes.