Helping Health Services to Meet the Needs of Young People with Chronic Conditions:Towards a Developmental Model for Transition

The transition to adult healthcare has been the subject of increased research and policy attention over many years. However, unmet needs of adolescent and young adults (AYAs) and their families continue to be documented, and universal implementation has yet to be realised. Therefore, it is pertinent to re-examine health transition in light of the principles of adolescent medicine from which it emerged, and consider this particular life transition in terms of a developmental milestone rather than a negotiation of structural boundaries between child and adult services. Health transitions are an integral part of AYA development and as such, occur alongside, and in connection with, a range of other important transitions that affect many other areas of life. In this paper, we discuss the interrelated nature of health transitions and AYA development; outline the underpinnings of a developmentally appropriate approach to transitional care; and consider the outcome measurement of such care based on existing evidence. A developmental approach has the potential to refocus transition on the fundamental principles of adolescent medicine, enabling health transition to be integrated along with other life transitions into routine AYA developmental assessments rather than being limited to the geographies of different healthcare settings and a potential health crisis

The impact of arthritis on the educational and early work experiences of young people:a qualitative secondary analysis

Introduction: Young people’s transition into adulthood is intertwined with the worlds of education and work. Poor health in adolescence has been associated with poorer education and employment outcomes in adulthood. This paper explores the impact of arthritis on the educational and early work experiences of young people with arthritis. Methods: We undertook a supplementary secondary analysis of a qualitative dataset comprising narrative and semi-structured interviews of 39 young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Results: Our findings illustrate how young people living with arthritis are faced with a range of added disruptions and challenges in their educational/vocational lives. There is an important element of resilience associated with the process of making a career choice and acting upon personal aspirations. Appropriate support and flexibility in the workplace/educational setting can enable successful outcomes, but disclosure is not a straightforward process for young people living with arthritis. Conclusions: It is paramount that health providers consistently and effectively address self-advocacy skills with the young person, particularly during educational and vocational transitions. Alongside this, there is the need to further strengthen the health-school/work interface to ensure that young people living with chronic illness can meet their full potential in adulthood

Agreement between proxy and adolescent assessment of disability, pain, and well-being in juvenile idiopathic arthritis.

OBJECTIVES: Adolescents with juvenile idiopathic arthritis have demonstrated substantial disagreement with their proxy's assessment of their disability, pain, and well-being. Our objective was to describe the clinical and psychological factors associated with discordance. STUDY DESIGN: This analysis included 204 proxy-adolescent (median age, 13 years) dyads that completed a Childhood Health Assessment Questionnaire for disability with 100-mm visual analogue scales for pain and well-being. Depressive symptoms in adolescents were measured by the Mood and Feelings Questionnaire and in proxies the General Health Questionnaire. Disagreement was assessed using Bland-Altman plots. Associations with discordance were identified using logistic regression analyses. RESULTS: There was higher agreement for disability (84%) than for pain (71%) and well-being (66%). Regression analyses found no association between age, sex, or disease duration and disagreement. However, relationships between disease activity and disagreement in outcomes were identified. Independent associations were found between increasing Mood and Feelings Questionnaire scores and disagreement in pain and well-being. CONCLUSIONS: Proxy and adolescent reports of pain and well-being are more likely to disagree in those with severe disease. Adolescents who report depressive symptoms are also more likely to disagree with their proxy. The reasons for these are multifactorial, and considerations of both reports are important when assessing outcomes in juvenile idiopathic arthritis

P50 addressing the vocational development of young people with long-term health conditions in health care settings:a systematic review and mixed methods synthesis

INTRODUCTION/BACKGROUND: Long term health conditions (LTHC) such as rheumatic conditions have significant impact on the biopsychosocial development of young people (YP) including vocational development. Educational transitions are prominent during adolescence and young adulthood yet not all transitional care programmes in rheumatology address this area [1]. The aim of this study was to identify and synthesise the benefits and experiences of addressing the vocational development of YP with LTHC in health care settings. DESCRIPTION/METHOD: A mixed methods synthesis approach [2] was employed. We systematically searched 10 bibliographic databases. Restrictions were applied on publication date (1996-2020) and publication language (English). Articles reporting quantitative and/or qualitative primary research on addressing vocational needs/issues of YP with LTHC in health care settings were included. YP was defined as 10-24 years [3]. Two reviewers independently screened records using predetermined inclusion/exclusion criteria [4]. Quality appraisal was undertaken following study selection. Qualitative data were synthesised thematically. Quantitative data were synthesised narratively, given that a pooled synthesis was not considered appropriate. A cross-study synthesis integrated findings from both the qualitative and quantitative syntheses. DISCUSSION/RESULTS: 43 articles were included. The quality of qualitative evidence was good; however, the quality of quantitative evidence was poor. The thematic synthesis of stakeholders’ perspectives (n = 23 qualitative studies) resulted in seven recommendations for interventions: provide skills training; provide psychological support; offer to liaise with key stakeholders in educational/workplace settings; provide specialist career advice; provide information, signposting and facilitate access to supporting services; provide/facilitate access to social support; provide flexible care and optimal disease management to support education/employment transitions. The narrative synthesis summarised the results of 17 interventions. The cross-study synthesis mapped interventions against the set of recommendations arising from stakeholders’ perspectives: four interventions met five recommendations; two interventions met four recommendations; five interventions met three recommendations; six interventions met two recommendations. Transitional care interventions were the type of intervention that most comprehensively met the recommendations. The way in which interventions addressed vocational issues was not always clear, with some interventions addressing them directly and others indirectly. No interventions had vocational issues as the core, defining component of the intervention. KEY LEARNING POINTS/CONCLUSION: Existing stakeholder evidence highlights that vocational development is an important area to address in the care of YP with LTHC such as rheumatic diseases. The resulting set of recommendations provides guidance for future research in this area and transitional care developments in rheumatology. Further work in this area should address these aspects to enable better quality evidence and ensure consistency. References [1] Clemente D et al. Pediatr Rheumatol Online J. 2017 Jun 9;15(1):49. [2] Kavanagh, J et al Synthesizing Qualitative Research: Choosing the Right Approach. Wiley-Blackwell, Chichester, UK, pp. 113–136 [3] World Health Organization, 2001. The second decade: improving adolescent health and development. Geneva. [4] Farre A et al. PROSPERO 2016 CRD42016051359

Identifying the content and context of pain within paediatric rheumatology healthcare professional curricula in the UK: a summative content analysis.

From Europe PMC via Jisc Publications RouterHistory: ppub 2021-08-01, epub 2021-08-21Publication status: PublishedFunder: Versus Arthritis; Grant(s): 12794BackgroundThe curriculum for professionals working in paediatric rheumatology should include pain but it is unclear to what extent this currently occurs. The aim of this study was to identify pain-related curriculum content and the context in which pain is presented in educational and training documentation for healthcare professionals in this clinical speciality.MethodsCore curricula documents from UK based professional organisations were identified in partnership with healthcare professionals. Documents were analysed using a summative content analysis approach. Key pain terms were quantified and weighted frequencies were used to explore narrative pain themes. Latent content was interpreted qualitatively to explore the context within which pain terms were positioned.ResultsNine curriculum documents were identified and analysed from doctors, nurses, physiotherapists and occupational therapists specialising in paediatric rheumatology. Pain themes represented a mean percentage of 1.51% of text across all documents. Pain was rarely presented in the context of both inflammatory and non-inflammatory condition types despite being a common feature of each. Musculoskeletal pain was portrayed simply as a 'somatic' symptom, rather than as a complex phenomenon involving biological and psychosocial processes. Content around the assessment and management of pain was vague and inexplicit.ConclusionCurrent educational and training documentation in paediatric rheumatology do not include core pain topics. Curricula for these healthcare professionals would benefit from updates in contemporary pain theories and examples of in-context, evidence-based pain practices. This should be a priority starting point for optimising patient pain care in paediatric musculoskeletal healthcare

Untimely illness:When diagnosis does not match age-related expectations

Background We explore the concept of “untimely diagnosis,” where the onset of a long-term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been used in various ways to make sense of the experience. Less attention has been paid to the condition onset when it seems dissonant with chronological age. Methods Secondary analysis of two qualitative data sets (total 58 interviews) exploring the experiences of people with adult-onset asthma and young people diagnosed with arthritis. Data from the original interview transcripts relating to diagnosis and symptom recognition were re-analysed using a “candidacy” framework to examine how age and diagnosis intersect. Results People did not always assert their candidacy for either condition because of pre-conceived expectations around age. Similarly, health professionals sometimes failed to recognize patients’ candidacy, instead pursuing “age-plausible” possibilities. In some cases, participants were proactive in suggesting a diagnosis to the health professional where diagnosis was delayed. Conclusion The diagnosis of adult-onset asthma, and arthritis in young people, may be regarded as “untimely.” We suggest that being diagnosed with what is perceived to be a “childhood” condition in adulthood, or “an older person's” condition in childhood, may be viewed as a “biographical paradox” and an “untimely breach” to the expected order

Can we normalise developmentally appropriate health care for young people in UK hospital settings? An ethnographic study

OBJECTIVE: The WHO has argued that adolescent-responsive health systems are required. Developmentally appropriate healthcare (DAH) for young people is one approach that could underpin this move. The aim of this study was to explore the potential for DAH to become normalised, to become a routine, taken-for-granted, element of clinical practice. DESIGN: Qualitative ethnographic study. Analyses were based on procedures from first-generation grounded theory and theoretically informed by normalisation process theory. SETTING: Two tertiary and one secondary care hospital in England. PARTICIPANTS: 192 participants, health professionals (n=121) and managers (n=71) were recruited between June 2013 and January 2015. Approximately 1600 hours of non-participant observations in clinics, wards and meeting rooms were conducted, alongside 65 formal qualitative interviews. RESULTS: We observed diverse values and commitments towards the care of young people and provision of DAH, including a distributed network of young person-orientated practitioners. Informal networks of trust existed, where specific people, teams or wards were understood to have the right skill-mix, or mindset, or access to resources, to work effectively with young people. As young people move through an organisation, the preference is to direct them to other young person-orientated practitioners, so inequities in skills and experience can be self-sustaining. At two sites, initiatives around adolescent and young adult training remained mostly within these informal networks of trust. At another, through support by wider management, we observed a programme that sought to make the young people's healthcare visible across the organisation, and to get people to reappraise values and commitment. CONCLUSION: To move towards normalisation of DAH within an organisation, we cannot solely rely on informal networks and cultures of young person-orientated training, practice and mutual referral and support. Organisation-wide strategies and training are needed, to enable better integration and consistency of health services for all young people