Search

Background Loneliness, the perception that one’s social relationships do not meet the desire for social connection, is a risk factor for poor mental and physical health. Adolescents with chronic pain experience higher rates of peer loneliness which persists over time. Previous studies used a single loneliness measure, limiting our understanding of the nature of their loneliness. This study describes the types of peer loneliness (intimate, relational, and collective) experienced by these adolescents and the impact that peer loneliness has on pain-related outcomes.Methods A cross-sectional online survey was completed by 128 Canadian adolescents aged 12–18 years who experienced pain for at least 3 months. Validated measures captured demographics, pain-related characteristics, types of peer-related loneliness, measures of social well-being, and mental and physical health outcomes.Results Friedman’s tests of z-scores indicate that participants equally experienced dyadic, relational, and collective peer loneliness. MANCOVA revealed that those who identify as Black were lonelier after controlling for socioeconomic status. Multiple regression showed that loneliness was a robust predicter of worse scores on social well-being and mental health outcomes with males and females equally impacted by loneliness. Despite moderate correlations between loneliness and pain interference and pain intensity, loneliness did not predict school absences, suggesting that loneliness’ influence on physical pain outcomes may be temporally earlier (e.g. contribute to pain chronification).Conclusions Peer loneliness among adolescents with chronic pain negatively impacts their social well-being and mental health outcomes. Interventions addressing loneliness to target all three types of peer loneliness may be key to improving pain-related outcomes.

This personal narrative article seeks to bring awareness to and provide an overview of the various aspects that come with being a lived experience researcher including the host of benefits and challenges that come with conducting research within one's own area of lived experience. Throughout this narrative, we (Bethany Donaghy, an autistic person, and Delane Linkiewich a person living with chronic pain) share our perspectives on what it is like to be lived experience researchers. Our narratives discuss how the many identities we hold both improve the impact and relevance of our research while also posing challenges for us like the additional responsibilities we hold and the reflections we have to make. Most importantly, we present several recommendations to all researchers on how to promote inclusive spaces and increase respect and appreciation for the expertise that people with lived experience hold. This piece outlines critical considerations of what may be considered as best practice for future inclusive research and we encourage researchers to actively consider embedding these recommendations within their own working practice.

Abstract Background The Chronic Pain Network (CPN) is a pan-Canadian research network focused on innovating and improving the quality and delivery of pain prevention, assessment, management and research for all Canadians. An important focus of the CPN is to work in collaboration with patient partners. Patient partners, researchers and clinicians work together in all aspects of the research network including on funded research projects and in the governance of the Network. Given this focus, the CPN identified the importance of evaluating their patient engagement work to understand its functioning and impact. Methods The objective of this exploratory evaluation case study was to understand the impacts of patient engagement on the CPN. The CPN worked with an external evaluation team which established an arms-length approach to the evaluation. Interviews were conducted with CPN members, including patient partners, leadership, funded researchers and committee co-chairs, at three discrete time points to trace the evolution of the patient engagement program within the Network. Key Network documents were also collected and reviewed. Data were analyzed following each set of interviews using content analysis guided by the principles of constant comparison and qualitative description. A final round of analysis was conducted using the Engage with Impact Toolkit, an impact measurement framework, to identify impacts of engagement. Results Impacts of patient engagement were identified at the individual, network, funded research project and research community levels. These impacts were observed in the following areas: (1) building community; (2) developing knowledge, skills and resources; (3) increasing confidence; (4) influencing priorities and decisions; (5) enabling additional opportunities; (6) promoting culture change; and, (7) coping with experiences of living with chronic pain. Conclusions While not without challenges, the patient engagement efforts of the CPN demonstrates the impact engaging patient partners can have on a national research network and related policy activities. Understanding the approaches to, and impacts of, patient engagement on health research networks can illuminate the value of having patient partners engaged in all aspects of a research network and should serve as encouragement to others who look to take on similar work.

Background Patient engagement (PE) in research refers to partnering with people with lived experience (e.g., patients, caregivers, family) as collaborators in the research process. Although PE is increasingly being recognized as an important aspect of health research, the current state of PE among pain research trainees in Canada is unclear.Aims The aims of this study were to describe perspectives about and experiences with PE among trainees conducting pain research in Canada, to identify perceived barriers and facilitators, and to describe recommendations to improve its implementation.Methods A cross-sectional web-based survey (English and French) was administered to trainees at any level conducting pain research at any Canadian academic institution.Results A total of 128 responses were received; 115 responses were complete and included in the final analysis. The majority of respondents identified as women (90/115; 78.3%), in graduate school (83/115; 72.2%), and conducting clinical pain research (83/115; 72.2%). Most respondents (103/115; 89.6%) indicated that PE is “very” or “extremely” important. Despite this, only a minority of respondents (23/111; 20.7%) indicated that they “often” or “always” implement PE within their own research. The most common barrier identified was lack of knowledge regarding the practical implementation of PE, and understanding its positive value was the most commonly reported facilitator. Recommendations for improving the implementation of PE were diverse.Conclusions Despite viewing PE as important in research, a minority of pain research trainees regularly implement PE. Results highlight perceived barriers and facilitators to PE and provide insight to inform the development of future training and other enabling initiatives.

Purpose: Involvement in sport is common among prospective medical students and may serve as a foundation for the psychological wellbeing of future physicians. This study examined the relationship between medical students’ sport background and their tolerance of ambiguity and uncertainty, an established factor in physician wellbeing and a key component in quality patient care. Method: Sixty-one 3rd year medical students (50% females) at a large Canadian university responded to a web-based survey (62% response rate). The survey included the 29-item TAMSAD (Tolerance of Ambiguity in Medical Students and Doctors) scale and sport background measures (sport type and level of involvement). Analysis of variance and correlational analysis were performed. Results: Analysis of variance indicated a significant mean difference in students’ TAMSAD scores based on sport type. Individual sport participants reported on average higher tolerance of ambiguity and uncertainty than team sport participants. However, in team sport participants, their tolerance of ambiguity and uncertainty tended to increase with an increase in sport involvement (from recreational to competitive). Discussion: The gained insights are valuable as involvement in dedicated, extracurricular activities such as sport has not been studied in relation to ambiguity and uncertainty tolerance in medical students. The findings have implications for medical education and professional practice. Medical students and physicians could draw on the attributes and skills developed in sport when responding to ambiguity and uncertainty in clinical settings. Those without a sport background could learn and apply some of the strategies athletes use to tackle setbacks and uncertainty in high-stakes situations. Medical school admissions, curriculum designers, and educators could use the knowledge in developing interview questions, designing educational innovations, and selecting instructional strategies for teaching clinical reasoning and decision making. Future research should include qualitative studies to provide in-depth explanations for the relationships observed in this study.

Abstract The Strategy for Patient-Oriented Research Chronic Pain Network was founded in 2016 and is a patient-oriented research network funded by the Canadian Institutes of Health Research. The Network incorporates patient partners throughout its governance and operations meaning that patient partners may contribute to research projects in ways that warrant scientific authorship as defined by the International Committee of Medical Journal Editors. The Network did a brief informal review of guidance on patient authorship in 2019, but could not find any practical documentation to guide its members on this topic. Note the term patient partner here refers to a patient (or caregiver or other person with lived experience) who is a partner or collaborator on a research team. This guidance does not address patients as participants in a research study. This guidance has been co-written by a group of researchers and patient partners of the Chronic Pain Network in an effort to address this gap. It is intended for both researchers and patient partner audiences. This guidance is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. While the overall principles of academic authorship and acknowledgement remain unchanged, nuances for interpreting these principles through the lens of patient engagement or patient-oriented research is provided. Teams that carry out patient-oriented research projects will require different preparation to empower all team members (researchers and patient partners) to discuss authorship and acknowledgement. To facilitate these conversations, we have included an overview of the scientific publishing process, explanation of some common terms, and sets of considerations are provided for both patient partners and researchers in determining the range of team member contribution from acknowledgement to authorship. Conversations about authorship can be difficult, even for established research teams. This guidance, and the resources discussed within it, are provided with the intention of making these conversations easier and more thoughtful.

The purpose of writing this article is to describe what added challenges people like us who are living with chronic pain are experiencing during the COVID-19 pandemic. We explore what this challenging time means to us and how it affects our lives, along with providing insight into our experiences. This is not a research study, but instead an article that shares perspectives from people with lived experience of chronic pain. Our narratives are presented to create an awareness of the plight for people already living with challenging health conditions and how the COVID-19 pandemic has added additional layers of vulnerability. While these stories offer brief accounts of some of the challenges we face, they also provide glimmers of hope that others with similar challenges can look to for inspiration. We also hope that our stories and reflections provide discussion points and perhaps even case studies for clinicians and policymakers who are working to strengthen clinical care and health systems for people with chronic conditions during pandemics such as COVID-19. Sharing our lived experiences with chronic pain during this global crisis may also spark critical conversations among all chronic pain stakeholders to ensure that we could continue to provide excellent care, strong self-management support and optimal health policy-making as this pandemic continues to unfold and for consideration for future health emergencies. Experience Framework This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens.