Nicola J. Gray

Blogging as a viable research methodology for young people with arthritis: a qualitative study.

Background The development of services that are responsive to the needs of users is a health policy priority. Finding ways of engaging young people in research to gain insights into their particular experiences, perspectives, and needs is vital but challenging. These data are critical to improving services in ways that meet the needs of young people. Objective Our aim was to evaluate Web-based blogging as a viable method for understanding the daily experiences and condition management strategies of young people with juvenile arthritis. Methods To meet the objectives of the study, a qualitative approach was required to gather information on the experiences and perspectives of young people regarding the management of their condition and its daily impact. In collaboration with a group of young people with arthritis, a custom website was developed. This website provided the opportunity for young people (aged 11-19) with arthritis from a United Kingdom pediatric hospital to contribute blogs. It was designed so that young people were free to write about whatever was important to them, but the site also included some structure and prompts to facilitate the writing of blogs. Qualitative analytical procedures were employed, supported by NVivo software. Results Engagement in the study by young people was variable in terms of their participation rates, frequency of website visits, and the length of their blogs. Young people used the site in different ways, some responding to the website categories and prompts that the team created, while others used it as a diary to record their experiences and thoughts. In line with principles of qualitative inquiry, the data collection was participant-led. Young people were in control of what, how much, and how often they wrote. However, some young people expressed difficulty regarding knowing what they should blog about. For a number of reasons, discussed here, the blogs may also not be fully reflective of experiences and perspectives of the participants. However, the data obtained provided insights into young people’s experiences of living with arthritis and their use of medicines in the context of their daily lives. Conclusions Web-based research with young people presents opportunities and challenges for researchers. Web-based blogging methodology has the potential to give young people and parents the space and empowerment to express their own ideas and concerns. However, this project suggests that it might not be the best way to engage a large diverse group of young people and might most effectively be combined with other approaches. Despite these limitations, the study provided valuable data about the experience and impact of living with a long-term condition from the perspectives of young people with arthritis.

Language and Love

Social networking sites (SNS) provide adolescents with opportunities for content generation on a wide range of social issues, providing unique insight into the psychosocial development of adolescence. We explored SNS webpages viewed by a random sample of adolescents during the initial uptake of SNS use (2005) to describe their general language use. Adolescents aged 14 to 17 with home Internet access were recruited using list-assisted random digit dialing methods. All SNS (MySpace) webpages viewed by participants were captured, and a large, structured set of texts (text corpus) was created from the profiles and message boards therein. Using concordance software, word frequency and keyword associations were analyzed. The 346 participants viewed approximately 28,000 MySpace pages, yielding a 1,147,432-word text corpus. Profile sections presented information about the content creator, while message boards focused more on short conversations with recipients. The most common content word was the term love. Profile owners would profess their love for activities, such as dancing, partying, or shopping, followed by their love for family, friends, and significant others. SNS offer teens an opportunity to describe and share feelings about people, places, and things connected to a range of activities and social contacts within their online and offline environments. Better understanding of SNS can offer strategies to adolescents and health care providers for insight into what connects young people in a community.

Empowering young patients with long-term conditions to take control of their medicines

Despite an increasing focus on empowering people with long-term conditions to take greater responsibility for their health and disease management, it is recognized that the voices and perspectives of young patients in these initiatives are often missing. However, in recent years a number of researchers and practitioners have found that children and adolescents often take an informed and active role in the management of their condition including the use of medicines, and many advocate that they should be encouraged to do so. This article provides an overview of the evidence on the roles and perspectives of young patients with long-term conditions in their use of medicines and associated decision making. This includes the implications for adherence, their participation in healthcare consultations, sources of information and interventions designed to enhance self-efficacy in the use of medicines.

Expanding the Role of the Pharmacist

Self-management is integral to transitional care for adolescents and young adults with special healthcare needs (AYASHCN), and medication management is a task that will be essential for most chronic illnesses. The pharmacist is an underused resource in the transitional care team, despite their custodianship of most medicinal products. In this chapter, we explore the current and potential roles of pharmacists in the care of AYASHCN. Pharmacists in hospital, ambulatory care, and retail/community settings have complementary roles. Their practice context is different—hospital pharmacists are generally more integrated into clinic teams. Community pharmacists are generalist healthcare providers who can facilitate development of generic healthcare skills, and they can provide continuity to AYASHCN and their families when transfer of care occurs. We propose that hospital pharmacists should be more involved in helping AYASHCN to develop effective medication management skills and that AYASHCN should be encouraged to find an empathetic community pharmacist at an early point in transition planning. We present a number of examples of innovation.