Background Chronic non‐cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non‐cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non‐cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non‐cancer pain identified a lack of high‐quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non‐cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non‐cancer pain and their families regarding chronic non‐cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non‐cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient‐reported outcome measures for use in chronic non‐cancer pain studies and interventions and care provision to children and their families. The review questions are: 1. How do children with chronic non‐cancer pain and their families conceptualise chronic pain? 2. How do children with chronic non‐cancer pain and their families live with chronic pain? 3. What do children with chronic non‐cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain? 4. What do children with chronic non‐cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services? Search methods Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non‐cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non‐cancer pain and their families. Data collection and analysis We conducted a qualitative evidence synthesis using meta‐ethnography, a seven‐phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta‐ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children with chronic non‐cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE‐CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non‐cancer pain. Main results We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE‐CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non‐cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well‐being, autonomy and sense of self‐identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non‐cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low‐ to middle‐income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family‐centred interventions and services acceptable to families. Future trials of children's chronic non‐cancer pain interventions should include family‐centred outcomes. 

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

The literature on the COVID-19 pandemic has shown the importance of investigating its impact on mental health during this sensitive period, also in relation to the female menstrual cycle. To this end, interceptive sensibility has emerged as a fundamental construct for studying the mind-body interaction among psychosomatic and pain symptoms, particularly through the distinction between two attentional styles (namely, a "mindful" and a "non-mindful" sensibility). The aim of the following study is to verify the role of mental health and interoceptive sensibility on menstrual symptoms in women of childbearing age, during the pandemic, as well as to identify the specific contribution of the existing dimensions of interoceptive sensibility in the prediction of symptoms' severity. Data were collected through an online survey, for which 5294 women responded on demographic information, menstrual history, symptoms' disturbance, and completed the Italian versions of the GHQ-12 and the MAIA. The analyses showed that symptoms were strongly correlated to either the GHQ-12 and the MAIA subscales Noticing, Emotional Awareness, Trusting and Not-Worrying. This result was further verified via a hierarchical regression, which revealed that the same interoceptive dimensions and mental health strongly predicted the intensity of menstrual symptoms (R2 = 0.177, ΔR2 = 0.143) compared to other considered dimensions (R2 = 0.180, ΔR2 = 0.002). Results are partially in line with the premises but suggest that mental health has a strong impact on the experience of the menstrual cycle and that only a few interoceptive dimensions may be relevant in explaining the severity of menstrual symptoms. It is here suggested that noticing internal bodily signals and being aware of emotional states might become dysfunctional if not reconciled with a good ability to self-regulate internal states, but may rather contribute to the perpetuation of the 'vicious cycle' of heightened affective and attentional reactions to interoceptive sensations. 

https://doi.org/10.1016/j.cpnec.2023.100182

Menstrual cycle symptomatology during the COVID-19 pandemic: The role of interoceptive sensibility and psychological health

Adolescents diagnosed with pediatric-onset multiple sclerosis (POMS) face a distinct set of challenges as they cope with a chronic neuroinflammatory disease during a formative stage of life. This review examines the growing body of literature on the psychosocial and cognitive consequences of POMS, from the trauma of diagnosis to disruptions in identity development, academic difficulties, and increased vulnerability to mental health issues. Many young people with MS experience fatigue, cognitive decline, depression, and anxiety, all of which can significantly interfere with their daily lives and overall well-being, even if physical symptoms of the disease remain limited. Yet, current care systems often fall short in addressing their needs, and interventions tailored to adolescents remain scarce. There is a pressing need for developmentally sensitive, family-centered, and integrated models of care. Targeted research and policy action are essential to better support this underserved group. This review builds on prior research by integrating recent findings with adolescent-development frameworks and by proposing a multicomponent health-promotion intervention model specific to POMS. The review describes relevant evidence-based approaches including cognitive behavioral therapy, mindfulness, peer-based interventions, and cognitive rehabilitation that were validated in adults with MS and chronically ill adolescents. The objective is to synthesize evidence and translate it into actionable recommendations for clinical care and research. 

Growing Up with MS: The Adolescent Experience of Pediatric-Onset Multiple Sclerosis

Abstract Chronic musculoskeletal pain (CMP) and coexisting mental health conditions impact young people; however, little is known about their lived and care experiences. In a prospectively registered systematic review with qualitative evidence synthesis (PROSPERO: CRD42022369914), we explored the following: (1) lived physical, psychological, and social experiences; and (2) care experiences/preferences of young people living with CMP and mental health conditions. Inclusion criteria: studies using qualitative methods; participants aged 16 to 24 years with CMP and coexisting mental health condition(s); phenomenon explored included lived and/or care experiences. Seven databases were searched (inception to 19-May-2024), study quality was assessed, data were extracted and analysed thematically, and GRADE-CERQual was used to assess confidence in findings. Twenty-two studies (23 reports) were included (&gt;239 participants, 82% women). Lived experiences yielded 4 themes (9 findings): 2-way relationship between CMP and mental health (2 findings, low to moderate confidence); psychosocial implications of CMP (3 findings, very low-moderate confidence); uncertainty about future (2 findings, low-moderate confidence); coping with CMP and mental health conditions (2 findings, low-moderate confidence). Care experiences/preferences yielded 3 themes (8 findings): navigating healthcare systems (2 findings, moderate confidence); receiving appropriate care (3 findings, very low-moderate confidence); point-of-care experiences and care preferences (3 findings, very low-moderate confidence). Chronic musculoskeletal pain and mental health conditions are interconnected, significantly impacting young people's lives, identities, and socialisation, yet services for CMP and mental health are often inadequate and poorly integrated. The mechanisms and interplay of CMP and mental health require deeper exploration, including how young people may be better supported with personalised, holistic, developmentally and/or life-stage-appropriate integrated care. 

Lived and care experiences of young people with chronic musculoskeletal pain and mental health conditions. A systematic review with qualitative evidence synthesis

Primary chronic pain (PCP), a relatively new classification, characterizes pain that is not a secondary response to an underlying primary condition such as trauma or cancer. This study explored the lived experience of adolescents with a diagnosis of PCP.A qualitative methodology, Interpretative Description (ID), was used to guide our study. ID uses a constructivist approach and allows for clinician experience to guide a theoretical scaffold of inquiry, which can be refined as the data collection progresses. We interviewed fifteen adolescents (n = 15) living with PCP.All participants in this sample reported struggling with diagnostic uncertainty, depression, and anxiety. Adding to their distress was the fact that our participants perceived that health care professionals did not believe them when they described their pain and its intensity.While significant research is being conducted on PCP, participants believe there is a lack of knowledge about PCP as a diagnosis and thus there are limited resources and a lack of empathy and understanding for these adolescents. 

Lived Experiences of Adolescents Living With Primary Chronic Pain.

OBJECTIVE To explore beliefs about worries, beliefs about pain, and worries about pain held by adolescents with and without chronic pain. METHODS Adolescents with and without chronic pain aged 14-19 completed an online survey with free text questions about pain and worry. We collected demographics and used the Penn State Worry Questionnaire and Pain Catastrophizing Scale for Children to contextualize the qualitative data, which was analyzed with reflexive thematic analysis. RESULTS Eighty-one participants completed the survey, 36 with chronic pain and 45 without (mean age: 16.73). Compared to adolescents without chronic pain, adolescents living with chronic pain reported significantly higher general worry and pain catastrophizing. Thematic analysis generated two themes, "Worry changes perceptions of selfhood" and "Pain changes perceptions of selfhood." Each theme comprised two sub-themes showing how current and future identity trajectories were distorted by worry and pain. The theme "Pain changes perceptions of selfhood" also included a third sub-theme: "Pain impedes future working choices." Worry content as well as process was problematic in all adolescents. Adolescents experiencing chronic pain had specific, additional worries that pain reduces future career progression. These worries appeared highly salient and challenging. CONCLUSIONS Adolescents may need greater support in recognizing worry as part of normative development. Adolescents in pain may benefit from specific support identifying and reducing how pain-related worries interact with their futures and careers, and from school-based and vocational interventions to reduce the realistic risks they face negotiating modern labor markets.

Beliefs about worry and pain amongst adolescents with and without chronic pain

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Beliefs about worry and pain amongst adolescents with and without chronic pain