Photos Sculpt the Stories of Youth: Using Photovoice to Holistically Capture the Lived Experiences and Pain of Youth Who Underwent Spinal Fusion Surgery.

Spinal fusion surgery is one of the most common major surgical procedures in youth. Adolescent idiopathic scoliosis (AIS) is the most frequent reason for corrective spinal fusion. AIS (∼25%-47% of cases) and spinal fusion surgeries are associated with pain, including the development of new onset chronic pain for up to 15% of youth. This research used photovoice approaches to explore the journeys of youth from before, during, and after spinal fusion surgery, to demonstrate their experiences both of and beyond pain. Twenty participants were recruited from a previous study conducted by the senior author's lab. Participants captured photos/videos in their daily life (Phase 1); collected previously taken photos/videos from before/during/after their surgery (Phase 2); and participated in individual interviews to reflexively discuss the meaning behind photos/videos (Phase 3). Before interviews, a questionnaire was administered to assess pain characteristics. Nineteen girls/women with scoliosis and one boy/man with kyphosis (12-19 years old, Mage = 16 years) participated; they identified as white (80%), other (15%), and Southeast Asian (5%). The researchers used a reflexive thematic analysis approach, which generated five themes: (1) body aesthetic versus machine; (2) expectations and anticipation of surgery/outcomes; (3) desire of normalcy and freedom; (4) navigating a hoped-for positive surgery experience; and (5) the journey sculpts identity formation and sense of self. Findings support youth advocacy, underscoring the need to validate youth concerns and inform healthcare professionals of the importance of individualized care. Youth perspectives highlighted opportunities for optimizing surgery/healthcare experiences and the psychosocial impacts of scoliosis on body image and appearance.

Delivering Team-Based Primary Care for the Management of Chronic Low Back Pain: An Interpretive Description Qualitative Study of Healthcare Provider Perspectives.

Background: Chronic low back pain (LBP) is a prevalent and disabling health issue. Team-based models of primary care are ideally positioned to provide comprehensive care for patients with chronic LBP. A better understanding of primary care team perspectives can inform future efforts to improve how team-based care is provided for patients with chronic LBP in this practice setting. Aims: The aim of this study was to understand health care providers' experiences, perceived barriers and facilitators, and recommendations when providing team-based primary care for the management of chronic LBP. Methods: We conducted an interpretive description qualitative study based on focus group discussions with health care providers from team-based primary care settings in Ontario, Canada. Data were analyzed using thematic analysis. Results: We conducted five focus groups with five different primary care teams, including a total of 31 health care providers. We constructed four themes (each with subthemes) related to experiences, perceived barriers and facilitators, and recommendations to providing team-based primary care for the management of chronic LBP, including (1) care pathways and models of service delivery, (2) team processes and organization, (3) team culture and environment, and (4) patient needs and readiness. Conclusions: Primary care teams are implementing diverse care pathways and models of service delivery for the management of patients with chronic LBP, which can be influenced by patient, team, and organizational factors. Results have potential implications for future research and practice innovations to improve how team-based primary care is delivered for patients with chronic LBP.

Contexte: La lombalgie chronique est un probléme de santé répandu et invalidant. Les modéles de soins primaires en équipe sont particuliérement bien placés pour dispenser des soins complets aux patients souffrant de lombalgie chronique. Une meilleure compréhension des perspectives de l'équipe de soins primaires peut éclairer les efforts futurs visant à améliorer la façon dont les soins en équipe sont dispensés aux patients atteints de lombalgie chronique dans ce cadre de pratique.Objectifs: L'objectif de cette étude était de comprendre les expériences des prestataires de soins de santé, les obstacles et les facilitateurs perçus, ainsi que les recommandations pour la prestation de soins primaires en équipe dans le cadre de la prise en charge de la lombalgie chronique.Méthodes: Nous avons mené une étude qualitative de description interprétative basée sur des discussions de groupe avec des prestataires de soins de santé issus de milieux de soins primaires en équipe en Ontario, au Canada. Les données ont été analysées à l'aide d'une analyse thématique.Résultats: Nous avons organisé cinq groupes de discussion avec cinq équipes de soins primaires différentes, auxquels ont participé 31 prestataires de soins de santé. Nous avons construit quatre thémes (chacun avec des sous-thémes) liés aux expériences, aux obstacles et aux facilitateurs perçus, ainsi qu'aux recommandations relatives à la prestation de services primaires en équipe pour la prise en charge de la lombalgie chronique, y compris (1) les parcours de soins et les modéles de prestation de services, (2) les processus et l'organisation de l'équipe, (3) la culture et l'environnement de l'équipe, et (4) les besoins des patients et leur état de préparation.Conclusions: Les équipes de soins primaires mettent en œuvre divers parcours de soins et modéles de prestation de services pour la prise en charge des patients atteints de lombalgie chronique, qui peuvent être influencés par des facteurs liés au patient, à l'équipe et à l'organisation. Les résultats ont des implications potentielles pour la recherche future et les innovations dans la pratique afin d'améliorer la façon dont les soins primaires en équipe sont dispensés aux patients atteints de lombalgie chronique.

"He told me my pain was in my head": mitigating testimonial injustice through peer support.

Introduction: Women with disabilities are exposed to sexism and ableism, earn less income, and work in exceptionally challenging conditions compared to women without disabilities and men with or without disabilities. Adolescent girls living with scoliosis may begin experiencing this compounding bias during their encounters with healthcare from the moment they start noticing differences in their bodies. Being significantly more likely than boys to progress to a curve angle where painful treatment such as bracing or spinal fusion surgery is required, adolescent girls living with scoliosis are therefore more likely to experience chronic pain. The long-term impact of pain and pain-related stigma includes lower educational attainments, decreased vocational functionality, and social impairments in adults after having experienced chronic pain in adolescence. Approach: In this article, the authors will explore the effects and mechanisms of gender-specific peer support in disrupting this trajectory to adverse outcomes. Through individual interviews consisting of open-ended questions, the researchers gathered narrative data from Curvy Girls members, a community-based peer support group for girls and young women living with scoliosis. The data was analyzed using an applied philosophical hermeneutics approach, with intersectionality and testimonial injustice as their framework. Findings: They found that the study participants had their pain narratives reinterpreted by the adults in their lives, including their parents and healthcare practitioners, leading them to question and doubt their own experiences. Discussion: These negative outcomes were mitigated through the peer support they received and offered from Curvy Girls. Participants reported having gained confidence and a sense of belonging after they joined this group, allowing them to better cope with their condition more effectively in different facets of their lives.