The end of being a straight child: an autoethnography of coping with adolescent idiopathic scoliosis.

PURPOSE: In the field of research on adolescent idiopathic scoliosis, the personal dimension is undervalued. Even the most comprehensive and current recommendations focus on biomedical issues and are entirely based on quantitative studies. Reports and narratives presenting people's preferences, values, views, and opinions, especially of those affected by this health condition, are not considered in those reports. This article's aim is to present personal experiences of scoliosis screening, diagnosis, and treatment, to contribute to the discussion. METHODS: This is an evocative narrative autoethnography study, which allows focusing on the personal story of the author's experiences of adolescent idiopathic scoliosis management, connecting it to the rehabilitation context. RESULTS: Experiences of non-person-centred rehabilitation resulted in stigmatisation, distress, and emotional upset, including anxiety and fear. In contrast, person-centred therapeutic relationship involved more positive outcomes of care, such as becoming an engaged co-responsible and active partner in rehabilitation. CONCLUSIONS: It is strongly suggested to promote biographical research into the personal experiences of all aspects of adolescent idiopathic scoliosis, to identify patients' preferences and values more clearly. Furthermore, screening, diagnosis and treatment processes should be reviewed in terms of person-centredness, to ensure they are responsive to young people's needs in the vulnerable time of puberty. IMPLICATIONS FOR REHABILITATION Adolescent idiopathic scoliosis, including the treatment, and even the diagnosis, may be stigmatising and may lead to emotional and psychosocial harms Adolescent idiopathic scoliosis screening, diagnosis and treatment processes need to be person-centred, recognising young people's needs for privacy and support in the vulnerable time of puberty Emotional support from therapists ought to be part of the professional relationship based upon being with another person An explication of experiences of living with adolescent idiopathic scoliosis should be considered as a legitimate contribution to the practical and scientific understanding of this health condition.

Screening for scoliosis - New recommendations, old dilemmas, no straight solutions.

This opinion review considers the prevailing question of whether to screen or not to screen for adolescent idiopathic scoliosis. New and improved standards of people-oriented care and person-centredness, as well as improved principles of preventive screening and guideline development, have been postulated and implemented in health care systems and cultures. Recommendations addressing screening for scoliosis differ substantially, in terms of their content, standards of development and screening principles. Some countries have discontinued issuing recommendations. In the last decade, a number of updated and new recommendations and statements have been released. Systematically developed guidelines and recommendations are confronted by consensus and opinion-based statements. The dilemmas and discrepancies prevail. The arguments concentrate on the issues of the need for early detection through screening in terms of the effectiveness of early treatment, on costs and cost-effectiveness issues, scientific and epidemiologic value of screenings, and the credibility of the sources of evidence. The problem matter is of global scale and applies to millions of people. It regards clinical and methodological dilemmas, but also the matter of vulnerable and fragile time of adolescence and, more generally, children's rights. The decisions need to integrate people's values and preferences - screening tests need to be acceptable to the population, and treatments need to be acceptable for patients. Therefore we present one more crucial, but underrepresented in the discussion, issue of understanding and implementation of the contemporary principles of person-centred care, standards of preventive screening, and guideline development, in the context of screening for scoliosis.

Mapping the evidence of experiences related to adolescent idiopathic scoliosis: a scoping review protocol.

INTRODUCTION: Adolescent idiopathic scoliosis, the diagnosis and management of this condition, may lead to poorer body image and diminished psychosocial functioning. Furthermore, treatment, especially bracing and surgery as well as screening, remain controversial and debated, with an unclear evidence base. Personal experiences in terms of issues such as person-centred care, shared decision making, and patient and public involvement, are contemporarily recognised as highly valued. Nonetheless, people's experiences related to adolescent idiopathic scoliosis is an issue underrepresented in current systematic reviews and systematically developed recommendations. There appears a substantial imbalance between a vast amount of biomedical research reports, and sporadic biopsychosocial publications in this field. The objective of this planned scoping review is to explore and map the available evidence from various sources to address a broad question of what is known about experiences of all those touched, directly and indirectly, by the problem of adolescent idiopathic scoliosis. METHODS AND ANALYSIS: We based our protocol on the Joanna Briggs Institute's scoping review method, including the Population - Concept - Context framework, to formulate the objectives, research questions, eligibility criteria and conduct characteristics of the study. We will consider any primary study designs, research synthesis reports, as well as narrative reviews and opinion pieces. We will not restrict eligible publications to English language. Search and selection processes will include academic and grey literature searches using multiple electronic databases, search engines and websites, hand searches, and contacting the authors. We will use a customised data charting table and present a narrative synthesis of the results. ETHICS AND DISSEMINATION: Scoping review is a secondary study, aiming at synthesising data from publicly available publications, hence it does not require ethical approval. We will submit the report to a peer-reviewed journal and disseminate it among professionals involved in scoliosis management, guideline and recommendation development, and policymaking.

[Rehabilitation based on the bio-psychosocial model concerns health condition, functioning and contextual factors].

This article describes the core themes in modern rehabilitation and how it can be used in practice. The purpose of rehabilitation is an independent and meaningful life with the greatest possible functional ability. Rehabilitation goals will always be what matters most to the patient (not what health professionals think matters). The doctor's role includes clarification of biomedical issues, but also highlighting resources and barriers in relation to rehabilitation (including practical, economic and social barriers and resources).

[Rehabilitation to people with mental disorders].

The Danish Government Committee on Psychiatry states that recovery-oriented rehabilitation is an important framework and direction in psychiatry. Recovery-oriented rehabilitation means that the intervention is based on best practice. It is also based on four values: self-determination, person involvement, self-determination/choice and growth potential. A comprehensive national plan of action on how to develop a recovery-oriented rehabilitation to Danish citizens with mental disorders is recommended.

Peers as resources for learning: a situated learning approach to adapted physical activity in rehabilitation.

The purpose of this study was to investigate the learning that takes place when people with disabilities interact in a rehabilitation context. Data were generated through in-depth interviews and close observations in a 2 (1/2) week-long rehabilitation program, where the participants learned both wheelchair skills and adapted physical activities. The findings from the qualitative data analysis are discussed in the context of situated learning (Lave & Wenger, 1991; Wenger, 1998). The results indicate that peer learning extends beyond skills and techniques, to include ways for the participants to make sense of their situations as wheelchair users. Also, it was found that the community of practice established between the participants represented a critical corrective to instructions provided by rehabilitation professionals.