Dataset Information

Characterizing the Pain Narratives of Parents of Youth With Chronic Pain.

ABSTRACT: Questionnaire-based research has shown that parents exert a powerful influence on and are profoundly influenced by living with a child with chronic pain. Examination of parents' pain narratives through an observational lens offers an alternative approach to understanding the complexity of pediatric chronic pain; however, the narratives of parents of youth with chronic pain have been largely overlooked. The present study aimed to characterize the vulnerability-based and resilience-based aspects of the pain narratives of parents of youth with chronic pain.Pain narratives of 46 parents were recorded during the baseline session as part of 2 clinical trials evaluating a behavioral intervention for parents of youth with chronic pain. The narratives were coded for aspects of pain-related vulnerability and resilience.Using exploratory cluster analysis, 2 styles of parents' pain narratives were identified. Distress narratives were characterized by more negative affect and an exclusively unresolved orientation toward the child's diagnosis of chronic pain, whereas resilience narratives were characterized by positive affect and a predominantly resolved orientation toward the child's diagnosis. Preliminary support for the validity of these clusters was provided through our finding of differences between clusters in parental pain catastrophizing about child pain (helplessness).Findings highlight the multidimensional nature of parents' experience of their child's pain problem. Clinical implications in terms of assessment and treatment are discussed.

SUBMITTER: Noel M

PROVIDER: S-EPMC4935638 | biostudies-literature | 2016 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Characterizing the Pain Narratives of Parents of Youth With Chronic Pain.

Noel Melanie M Beals-Erickson Sarah E SE Law Emily F EF Alberts Nicole M NM Palermo Tonya M TM

The Clinical journal of pain 20161001 10

<h4>Objectives</h4>Questionnaire-based research has shown that parents exert a powerful influence on and are profoundly influenced by living with a child with chronic pain. Examination of parents' pain narratives through an observational lens offers an alternative approach to understanding the complexity of pediatric chronic pain; however, the narratives of parents of youth with chronic pain have been largely overlooked. The present study aimed to characterize the vulnerability-based and resilie ...[more]

PMID: 26736026

Similar Datasets

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.

Project description:Youth have a right to participate in research that will inform the care that they receive. Engagement with children and young people has been shown to improve rates of enrollment and retention in clinical trials as well as reduce research waste. The aim of the study is to gain practical insight on the design of trials specifically on (1) recruitment and retention preferences, (2) potential barriers to research, and (3) study design optimization. Based on this youth engagement, we will co-design two clinical trials in headaches with youth. Two recruitment strategies were used to recruit 16 youth from across Canada (aged 15-18 years) from an existing youth group, the KidsCan Young Persons' Research Advisory Group (YPRAG) and a new youth group in collaboration with Solutions for Kids in Pain (SKIP). Four virtual, semi-structured discussion groups were held between April and December 2020, which included pre-circulated materials and utilized two distinct upcoming planned trials as examples for specific methods feedback. Individual engagement evaluations were completed following the final group session using the Public and Patient Engagement Evaluation Tool. Descriptive results were shared with participants prior to publication to ensure appropriate interpretation. The discussion was centred around three themes: recruitment and retention preferences, potential barriers to participation, and study design optimization. Youth indicated that they would prefer to be contacted for a potential study directly by their physician (not over social media), that they would like to develop rapport with study staff, and that one of the barriers to participation is the time commitment. The youth also provided feedback on the design of the clinical trial including outcome measurement tools, data collection, and engagement methods. Feedback on the virtual format of the engagement events indicated that participants appreciated the ease of the online discussion and that the open-ended discussion allowed for easy exchange of ideas. They felt that despite a gender imbalance (towards females) it was an overall inclusive environment. All participants reported believing that their engagement will make a difference to the work of the research team in designing the clinical trials. Perspectives from a diverse group of youth meaningfully improved the design and conduct of two clinical trials for headaches in children. This study provides a framework for future researchers to engage youth in the co-design of clinical trials using online engagement sessions.

Dataset Information

Characterizing the Pain Narratives of Parents of Youth With Chronic Pain.

Publications

Characterizing the Pain Narratives of Parents of Youth With Chronic Pain.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets