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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. [ABSTRACT FROM AUTHOR]

The article presents a study which examines how people with life-limiting conditions and their families experience transition, including the implications for hospices of children. The study used a grounded theory approach and in-depth, semi-structured interviews for qualitative study. Results showed that one aspect of developing support for young people is to provide an appropriate building, and a different model of support is required.

Background: Increasing the effective targeting and promotion of self-care support for long-term conditions requires more of a focus on patient contexts and networks. The aim of this paper is to describe how within a programme of research and implementation, social networks are viewed as being centrally involved in the mobilisation and deployment of resources in the management of a chronic condition. This forms the basis of a novel approach to understanding, designing, and implementing new forms of self-management support. Methods: Drawing on evidence syntheses about social networks and capital and the role of information in self-management, we build on four conceptual approaches to inform the design of our research on the implementation of self-care support for people with long-term conditions. Our approach takes into consideration the form and content of social networks, notions of chronic illness work, normalisation process theory (NPT), and the whole systems informing self-management engagement (WISE) approach to self-care support. Discussion: The translation and implementation of a self-care agenda in contemporary health and social context needs to acknowledge and incorporate the resources and networks operating in patients' domestic and social environments and everyday lives. The latter compliments the focus on healthcare settings for developing and delivering self-care support by viewing communities and networks, as well as people suffering from long-term conditions, as a key means of support for managing long-term conditions. By focusing on patient work and social-network provision, our aim is to open up a second frontier in implementation research, to translate knowledge into better chronic illness management, and to shift the emphasis towards support that takes place outside formal health services. [ABSTRACT FROM AUTHOR]

Aims and objectives. To review and critique the research literature on children’s and young people’s participation in health care decision-making, to highlight gaps in the research and to identify implications for nursing practice. Background. Children have a right to participate in decisions about their lives. The recognition of this, along with greater acknowledgement of children’s capabilities, has led to an increasing awareness that children’s views must be given value in both national policy and individual decisions. Health professionals have also been given explicit direction to ensure that children are actively involved in decision-making. Design. Literature review. Method. Search of electronic databases and manual searching of journals and reference lists between 1990–2009. Results. Children want to be involved in discussions about their care but it is unclear to what extent this happens in practice. The research conducted has interpreted participation in different ways. Studies have compared decisions of differing importance in terms of risk and many have a wide age range in their samples, including children who are arguably too young for meaningful participation. However, this heterogeneity is often overlooked in the reporting of studies. Aspects of practice which can help or hinder participation are identified but there is little evidence on the outcome benefits of participation. In addition, there has been an over-reliance on interviews as the method of data collection. Conclusions. Research using a combination of observation and interviewing would provide more in-depth knowledge about participation in practice. In addition, studies should consider decisions of similar consequence and children at an age when participation is appropriate. Relevance to clinical practice. The need for health professionals to ensure children are protected is undisputed but should not prevent children’s rights to participate from being enacted. Practitioners, therefore, need further guidance on how to facilitate the participation of children. [ABSTRACT FROM AUTHOR]

Abstract: Background: There is an increasing interest in involving children in research that has been influenced by the recognition of children''s rights and by the reconceptualisation of children within the social sciences as active agents rather than as the objects of research. Objectives: To review the methodological and ethical issues involved in conducting qualitative research with children and to consider the implications for nursing research in light of recent debates within the social sciences. Design: Narrative literature review using a systematic search of computerized databases. Data Sources: Published papers, key texts, reports and policy documents that relate to the methodological and ethical issues in conducting qualitative research with children. Results: There are three ethical issues in relation to conducting research with children: power relations, informed consent and confidentiality. Two key methodological issues are identifiable in relation to conducting research with children. One is epistemological and relates to the different cultures of childhood and adulthood and the second relates to the heterogenous nature of childhood itself. Novel techniques and task-based activities are being increasingly used to establish rapport and as a method of data collection. Conclusion: There are both differences and similarities in conducting qualitative research with children and with adults but often the similarities have been overlooked and the differences overstated. Nursing and other health-related researchers conducting research with adults could learn much from children''s researchers, particularly in terms of sensitivity to ethical issues. Nursing research need to consider the methodological issues that have been debated in the social sciences and to critically reflect on the use of novel techniques in qualitative research. [Copyright &y& Elsevier]

The bulk of care in the community is carried out by lay carers. Recent policy initiatives to support them in the United Kingdom are outlined. There remains evidence of significant gaps in support from professional health and social–care workers including community nurses. This paper reports three studies of lay carers: those caring for older people, carers of technology–dependent children, and home–care workers involved in the “direct payments” scheme. Findings are reported in the areas of decisions about appropriate caring roles, the lay–professional boundary, training and respite opportunities and the expertise of lay carers. Recommendations for policy and practices are made. [ABSTRACT FROM AUTHOR]

In the United Kingdom a new group of children with intensive and complex health care needs are now being cared for at home as a result of medical advances and government policies emphasising the community as the arena for care. This has led their parents to become involved in providing care of a highly technical and intensive nature that would previously have been considered to be the domain of professionals. In-depth qualitative interviews were conducted with parents and professionals to discover parents’ and professionals’ experiences of receiving and providing support in a context where parents rather than professionals are the expert caregivers. This paper describes the elements of professional ‘support’ that were particularly valued by parents and concludes with a discussion of the implications for professional education and roles. [Copyright &y& Elsevier]

Abstract People needing intensive and specialized health care are being cared for now in community settings; this has implications for both primary health care professionals and family carers. This paper draws on research investigating how services can be developed to support families caring for children with complex health care needs, to consider the challenges facing professionals working in the primary health care sector. Interviews conducted with parents, professionals and those who fund and commission specialized health services reveal particular problems in relation to the purchasing and provision of short-term care and specialist equipment/therapies in the community. These problems need to be addressed if people with specialized needs are to be cared for outside hospitals. The new Primary Care Groups (PCGs) will have the opportunity to enhance the provision of these services. Primary care professionals will also need to work in partnership with other sectors of the health service and with local authority services, at both strategic and operational levels, to develop integrated and coordinated services for this growing group of people. [ABSTRACT FROM AUTHOR]