Background: There is growing recognition that multiple sclerosis (MS) is a possible, albeit
Teachers are supporting an increasing number of pupils with long‐term health conditions in mainstream schools. The aim of this literature review was to critically appraise and synthesise research that has examined teachers' perceptions of the key barriers and facilitators to supporting pupils with long‐term conditions, teachers' training needs and interventions that aim to improve teachers' knowledge of long‐term conditions, and teachers' confidence in supporting children and young people. A narrative literature review was conducted using a systematic search of computerised databases and manual searches of key journals and reference lists to retrieve studies published between 2003 and 2013. Studies were critically appraised and key themes across studies identified. In total, 61 papers from 58 studies were included in the review. The findings suggest that teachers receive little formal training relevant to long‐term condition management and are fearful of the risks involved in teaching children and young people with long‐term conditions. Communication between families, school and health and social care services appears to be poor. Educational programmes developed in conjunction with and/or delivered by healthcare professionals seem to have the potential to increase teachers' knowledge and confidence. This review suggests that healthcare professionals have an important role to play in supporting teachers in identifying and meeting the needs of pupils with long‐term conditions. It is vital that pupils with long‐term conditions receive appropriate care and support in schools to ensure their safety and help them to integrate with their peers and achieve their academic potential. Limitations in the current evidence are highlighted and implications for future research are identified.
Background: Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood.Aims: To explore how young people experience an MS diagnosis.Methods: Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom.Results: Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships.Conclusions: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.
Obtaining a diagnosis of paediatric MS can be a challenging and lengthy process with potentially adverse implications for the health of children/adolescents. Valuing families' knowledge and experience of their child's health, performing a thorough medical examination early in the disease course and organising prompt referrals may aid the early investigation and diagnosis of this disease. In view of the diagnostic challenges, children/adolescents with suspected MS would benefit from early referrals to specialists in paediatric MS.
Children and young people frequently report physical complaints that have no observable physical pathology known as medically unexplained symptoms (MUS). Research suggests that MUS are associated with substantial physical and psychological impairments and may have a negative impact on children's and young people's functional status and well‐being in the long term. Due to the potentially complex needs of this group, children and young people with MUS may require timely access to suitable health and social care services to effectively manage symptoms and achieve their academic, social and personal potential. Families and professionals can offer important insights into the availability and appropriateness of current community and specialist health and social care services. This review is the first critical evaluation and synthesis of research that has examined families' and healthcare professionals' (HCP) perceptions of healthcare services for children and young people with MUS. A systematic search of electronic databases and manual searches of key journals and reference lists identified 17 papers from 15 studies for inclusion in the review. The review highlights the paucity of rigorously conducted research on this topic. Studies have been narrowly focused on the views of a homogeneous group of mothers and young people attending single centres. There has been some attempt to examine doctors' views, but the perceptions of children, fathers and health and social care professionals are absent or under‐represented, and multi‐site and longitudinal studies are lacking. Thematic analysis of the results from the included studies suggests that knowledge, communication, health beliefs and healthcare settings are factors that influence families' and HCPs' perceptions of services. Families report dissatisfaction with some HCPs' approach to managing MUS. The findings suggest that children and young people with MUS are at risk of receiving suboptimal care and support because there is insufficient research to inform high‐quality, evidence‐based practice.
Recent developments in mobile and information technology provide new ways of conducting research with young people. The ubiquitous use of mobile telephones by young people, for example, allows researchers to interact with participants who are neither physically present nor spatially fixed, so that data can be captured as young people go about their daily lives. Using mobile phones to interview young people, however, presents a number of ethical challenges which may not be addressed by standard ethical frameworks. Drawing on a study of 42 university students aged 20–25 years old in Wales (the United Kingdom [UK]), this article examines the practical and ethical issues associated with conducting in-depth interviews via mobile telephones, and highlights the challenge of maintaining participant confidentiality when young people choose to conduct their mobile telephone conversations in public places. This article contends that research guidelines need to be more responsive to young people’s use of technology and their shifting interpretations of public/private boundaries to encourage good research practice that safeguards young people’s personal data.
Aims Increasing numbers of children and young people are being diagnosed with multiple sclerosis (MS). However, there is a lack of research about young peoples’ and parents’ experiences of living with MS and it is unknown how appropriate current support is for families. This presentation will report the findings from the first UK study that has explored the experiences and needs of parents and young people and examined the adequacy and appropriateness of services and support for this group of families. Methods A qualitative approach (grounded theory) was taken. Semi-structured, in-depth interviews were conducted with 21 children/young people, 31 parents and 20 health-care professionals. The sample was recruited via health service and voluntary sector organisations across the UK. Data were analysed using the constant comparison approach. Findings Obtaining a diagnosis was a difficult process characterised by delays, alternative diagnoses, uncertainty and conflict (inter-professional and parent-professional) that related to the condition’s rare and newly recognised status. Families experienced an MS diagnosis as both a desirable and undesirable event in their lives. Disclosure of the diagnosis to others produced a range of responses including disbelief which could contribute to an ongoing sense of uncertainty. Life with childhood MS was a challenging and distressing experience for families because of its uncertain and variable nature. Parents and young people reported feelings of depression and isolation. Families lacked information about the condition and found it difficult accessing specialist expertise as well as peer support due to the condition’s rarity. Different service models were evident across the UK with adult services playing a key role in supporting families and paediatric clinicians. Healthcare professionals faced challenges in organising services and therapies (including medications) to support families at home and in school. This was compounded by the variable and unpredictable needs of children/young people with MS. Families valued receiving support from a specialist nurse although this was not provided by many centres. Conclusions This study has illuminated young people’s, parents’ and professionals’ experiences of childhood MS, how services are organised and the current gaps in support. These findings may have relevance to other rare childhood conditions.
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