Dataset Information

Collaborating with a Youth Council to Improve Chronic Pain Resources.

ABSTRACT:

Background

There is a recognized need to involve people with lived experience of chronic pain when developing chronic pain resources.

Aims

The aim of this study was to develop, implement, and evaluate a short-term youth council focused on eliciting youths' recommendations for key features of chronic pain informational resources.

Methods

In this mixed methods instrumental case study, demographic data were collected via Survey Monkey®. Select Patient-Reported Outcomes Measurement Information System® brief measures were used to provide context regarding pain impact within this group. Participants completed an initial interview, which informed youth council workshop delivery. Over two youth council workshops, participants reviewed select informational resources and identified key features of chronic pain resources. Participants evaluated their involvement experience during a second interview. Qualitative data were transcribed and analyzed using directed content analysis. Member-checking occurred during a third workshop, held virtually.

Results

Seven youth self-identifying as girl/woman or demi-girl participated. The youth were satisfied with the youth council experience, highlighting the importance of meeting others, a relaxed environment, and participating in valuable work. A list of youth-identified key features for informational resources was created through the workshops, which includes considerations for audience groups, content, and presentation.

Conclusion

Participants' input into youth council development and meeting others with lived experience contributed to a safe and supportive involvement experience. Youth council involvement supported the development of preliminary recommendations for chronic pain informational resources.

SUBMITTER: Wittmeier K

PROVIDER: S-EPMC10614709 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Publications

Collaborating with a Youth Council to Improve Chronic Pain Resources.

Wittmeier Kristy K Brown Cara C Diaz Francis F Pylypjuk Heidi H Restall Gayle G Anang Polina P Gerhold Kerstin K

Canadian journal of pain = Revue canadienne de la douleur 20230901 1

<h4>Background</h4>There is a recognized need to involve people with lived experience of chronic pain when developing chronic pain resources.<h4>Aims</h4>The aim of this study was to develop, implement, and evaluate a short-term youth council focused on eliciting youths' recommendations for key features of chronic pain informational resources.<h4>Methods</h4>In this mixed methods instrumental case study, demographic data were collected via Survey Monkey®. Select Patient-Reported Outcomes Measure ...[more]

PMID: 37908591

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Project description:BACKGROUND:Chronic musculoskeletal pain (MSP) is frequent in adolescents and has major medical and social consequences. In many cases, when no cause has been clearly established, this pain may be considered to be chronic idiopathic MSP. Our study seeks to identify general criteria for this type of pain through the experience of professionals from tertiary care centers with expertise in pediatric and adolescent chronic MSP. METHODS:Cross-sectional multicenter qualitative study. Semi-structured interviews of 25 professionals at a rheumatology reference center and in its network for pain management, including diverse specialists and professions. Interpretative Phenomenological Analysis is used to explore the data. RESULTS:This approach led us to identify 10 themes organized around three superordinate themes covering different stages of the diagnostic process: 1) the medical pain history up to the consultation at the reference center; 2) the professional's subjective feelings about the clinical presentation; 3) from the clinical examination to diagnosis and treatment of chronic idiopathic MSP. The main elements guiding this diagnosis do not come from the physical examination but from the medical history and the professionals' subjective feelings, that is, their clinical judgment. The professionals' impression of uneasiness and frustration, induced by patients and their parents, is of major importance. CONCLUSION:The principal elements guiding the diagnosis of chronic idiopathic MSP do not come primarily from the physical examination but rather from the pain history and the health professional's subjective feelings. Our results suggest that the concept of Juvenile Fibromyalgia (JFM) does not appear to cover all situations of chronic idiopathic MSP in adolescence. A constellation of non-organic criteria enables diagnosis of the latter; these criteria should be validated to avoid medical nomadism and multiple investigations and to shorten the interval until patients receive optimal pain management. CLINICAL TRIAL REGISTRATION:clinicaltrials.gov, NCT03171792, https://clinicaltrials.gov/ct2/show/NCT03171792?term=LACHAL&cntry=FR&city=paris&rank=1.

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Dataset Information

Collaborating with a Youth Council to Improve Chronic Pain Resources.

Background

Aims

Methods

Results

Conclusion

Publications

Collaborating with a Youth Council to Improve Chronic Pain Resources.

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