As Facts and Chats Go Online, What Is Important for Adolescents with Type 1 Diabetes?

BACKGROUND: Continued refinement of resources for patient information, education and support is needed. Considering the rapid development of new communication practices, the perspectives of young people themselves warrant more attention using a wide research focus. The purpose of this study was to understand information-seeking behaviours, Internet use and social networking online in adolescents with type 1 diabetes (T1DM). This applied to their everyday life, including the context of diabetes and their experiences and need of contact with T1DM peers. METHODOLOGY/PRINCIPAL FINDINGS: Twenty-four adolescents aged 10-17 years with T1DM were recruited from a county hospital in the south-east of Sweden. Qualitative data were obtained using eight focus groups, wherein each participant engaged in a 60-90 minute video/audio-recorded session. The focus group data were transcribed and analysed using qualitative content analysis. Some demographic and medical information was also collected. The three main categories that were identified; Aspects of Security, Updating, and Plainness and their sub-categories gave significant information about how to enhance information retrieval and peer contacts related to T1DM. Regarding the persons' information-seeking behaviour, Internet use, and use of social media some differences could be identified depending on gender and age. CONCLUSIONS/SIGNIFICANCE: Sensitivity and adaptation to users' needs and expectations seem crucial in the development of future online resources for adolescents with T1DM. To start with, this could mean applying a wider range of already existing information and communication technologies. Health practitioners need to focus on the areas of security of information and communication, frequency of updating, and simplicity of design-less is more.

Parents of adolescents with type 1 diabetes--their views on information and communication needs and internet use. A qualitative study.

BACKGROUND: Little is known about parents' views on the use of online resources for information, education and support regarding childhood type 1 diabetes (T1DM). Considering the rapidly evolving new communication practices, parents' perspectives need to be explored. The main purpose of this paper was to explore parents' perceptions of their information-seeking, Internet use, and social networking online. This applied to their everyday life, including the contexts of T1DM and contact with peers. A second aim was to identify implications for future development of Internet use in this respect. METHODOLOGY/PRINCIPAL FINDINGS: Twenty-seven parents of 24 young persons aged 10-17 with T1DM participated in eight focus group interviews during their regular visits to a county hospital. Focus group discussions were video/audio-taped, transcribed and analysed using inductive qualitative content analysis. Self-reported demographic and medical information was also collected. A main theme was Finding things out, including two sub-themes, Trust and Suitability. The latter were key factors affecting parents' perceptions of online resources. Parents' choice of information source was related to the situation, previous experiences and knowledge about sources and, most importantly, the level of trust in the source. A constantly present background theme was Life situation, including two sub-themes, Roles and functions and Emotions and needs. Parents' information-seeking regarding T1DM varied greatly, and was closely associated with their life situation, the adolescents development phases and the disease trajectory. CONCLUSIONS/SIGNIFICANCE: Health practitioners and system developers need to focus on creating trust and suitability for users' needs. They should understand the children's diverse needs, which depend on their life situation, on the children's development, and on the disease trajectory. To enhance trust in online health information and support services, the participation of local practitioners is crucial.

To use or not to use--practitioners' perceptions of an open web portal for young patients with diabetes.

BACKGROUND: Health care professionals' attitudes can be a significant factor in their acceptance and efficient use of information technology, so they need to have more knowledge about this resource to enhance their participation. OBJECTIVE: We explored practitioners' perceptions of using an open-access interactive Web portal tailored to young diabetes type 1 patients and their guardians or significant others. The portal offered discussion forums, blog tools, self-care and treatment information, research updates, and news from local practitioners. METHODS: Eighteen professionals who were on pediatric diabetes care teams each wrote an essay on their experience using the portal. For their essays, they were asked to describe two situations, focusing on positive and negative user experiences. The essays were analyzed using qualitative content analysis. RESULTS: Based on our analysis of the respondents essays, we identified three categories that describe perceptions of the Web portal. The first category - to use or not to use - included the different perspectives of the practioners; those who questioned the benefits of using the Web portal or showed some resistance to using it. The frequency of use among the practitioners varied greatly. Some practitioners never used it, while others used it on a daily basis and regularly promoted it to their patients. Some respondents in this category reflected on the benefits of contributing actively to online dialogues. In the second category - information center for everyone - practitioners embraced the site as a resource for scientifically sound information and advice. As part of their practice, and as a complement to traditional care, practitioners in this category described sending information through the portal to patients and their significant others. Practitioners felt safe recommending the site because they knew that the information provided was generated by other practitioners. They also assumed that their patients benefited from actively using the Web portal at home: peers brought the site to life by exchanging experiences through the discussion forums. In the third category - developing our practice - practitioners reflected upon the types of information that should be given to patients and how to give it (ie, during in-person appointments or through the Web portal). They perceived meeting with various professionals at other hospitals to update information on the portal and develop content policies as constructive teamwork. Practitioners expressed interest in reading patients' dialogues online to learn more about their views. They also thought about how they could use the portal to adapt more to patients' needs (eg, creating functions so patients could chat with the diabetes nurses and doctors). CONCLUSIONS: Practitioners expressed positive perceptions toward a tailored open Web portal. They suggested that future benefits could be derived from systems that integrate factual information and online dialogues between practitioners and patients (ie, exchanging information for everyone's benefit).

Psychiatric and somatic health in relation to experience of parental divorce in childhood.

BACKGROUND: The outcome of studies about the experience of parental divorce and its effects on mental and physical health differs, a result possibly caused by the use of different questionnaires and instruments, varying length of time since the divorce and divergent drop-out of participants. AIMS: To study the presence of psychiatric records and number of diagnosed somatic and mental healthcare visits in a group of young adults with childhood experience of parental divorce in comparison to a group without this experience. METHODS: The presence of records at public psychiatric clinics and 10 years of administrative healthcare data (somatic and mental) were checked for both groups. RESULTS: Significantly more persons from the divorce group appeared in child and adolescent psychiatric care; this was most pronounced in females. However, there were no significant differences between the groups in the number of persons seeking adult psychiatry or in the number of psychiatric consultations. Experience of parental divorce was not found to be an indicator of larger somatic health problems. CONCLUSION: Experience of parental divorce in childhood is not an indicator of adult psychiatric or somatic need of care.

Fifteen years after parental divorce: mental health and experienced life-events.

The children who experienced their parents' divorce when the divorce rate in Sweden had begun to grow to higher levels than in preceding decades are today adults. The aim of this study was to investigate if adults who had experienced parental divorce 15 years before the time of our study, differed in mental health from those with continuously married parents, taking into account life events other than the divorce. Instruments used were the Symptom Checklist (SCL-90) measuring mental health and the Life Event questionnaire capturing the number and experience of occurred events. Forty-eight persons, who were 7-18 years old when their parents divorced, constituted the divorce group, and 48 persons matched on age, sex and growth environment formed the study groups. The SCL-90 showed a limited difference between the groups, but not concerning total mental health. A main finding was a difference with regard to sex and age; women aged 22-27 in the divorce group displayed poorer mental health than other participants in both groups. The results from the Life Event questionnaire showed that the divorce group had experienced a significantly larger number of events, and more life events were described as negative with difficult adjustment. A regression analysis showed a significant relation between the SCL-90, Global Severity Index and life events experienced as negative with difficult adjustment, divorce events excluded, but not with the divorce itself. It seems highly desirable to pay more attention than has thus far been paid to girls with experience of childhood divorce at age 7-12.