Worldwide, the prevalence of chronic (or long-term) conditions in children and young people from birth to 18 years (children) is increasing. Promoting competent and effective self-management skills early in the trajectory is important to improve adherence to treatment and optimise quality of life. Successful self-management, therefore, requires parents and children who are developmentally able to develop a range of complex skills, including the use of digital technologies. This scoping review aimed to identify primary research investigating digital technologies for children and parents sharing self-management in childhood chronic illnesses. A comprehensive search of electronic databases was conducted. Nineteen papers were included, assessed for quality and methodological rigour using the Hawker tool and thematically analysed. Three themes were identified: (i) the feasibility and acceptability of using technology, (ii) the usability of technologies and (iii) the effect of technologies on adherence and self-management skills. The results indicate that technologies such as mobile apps and websites can assist the management of long-term conditions, are an acceptable method of delivering information and can promote the development of effective self-management skills by parents and children. However, future technology design must include children and parents in all stages of development.

This is a repository copy of Developing a mobile-app to aid young people's self-management of chronic rheumatic disease: a qualitative study.

Aim The emphasis on delivering personalised care tailored to meet the needs of patients has been at the forefront of UK government health policies for a number of years.1 However, before we can meet the needs of patients, their needs need to be identified and explored. For parents of children on oral chemotherapy, it is paramount that they fully comprehend what they are required to do in order to safely and effectively manage the oral chemotherapy at home. This study aims to identify, explore and analyse the information needs of parents regarding their child's oral chemotherapy to enable the future provision of high-quality individualised information. Method A qualitative methodology was used; semi-structured interviews were conducted with parents regarding their child's oral chemotherapy. A diverse sample of parents was purposively chosen to encompass children at different stages of treatment and with different diagnoses. Interviews were audio-recorded and transcribed alongside field notes made by the interviewer. Data were analysed using thematic analysis. Results Thirteen parents (12 mothers; one father) were interviewed. Two overarching themes were identified; the need for information and the parental struggle. Parents were found to have a wide variety of information needs ranging from treatment related information to information on drug-food/drug-drug interactions. Despite differences in the type of medicines related information parents required, all parents expressed the need for reassurance on aspects of their child's treatment. Most of the parents preferred to receive verbal and written information on the oral chemotherapy, with two parents suggesting the internet as an additional source of information. Although all parents indicated they were satisfied with the information provided to them by the healthcare team, a number of unmet needs were identified. These included how to safely handle the oral chemotherapy and basic details about the drug, what it is and how it works. Parents encountered many difficulties at home such as dealing with the side effects of treatment and administering the medicines whilst trying to maintain normality for the family. Even though the majority of parents felt overloaded with information and struggled with the quantity of information provided, parents often sought further information from additional sources (eg, internet) for reassurance. Conclusions Information needs varied between parents but also at different stages of the disease pathway. Although the need for treatment related information was expressed by parents, the need for practical information, support and reassurance in connection with their coping strategies was fundamental to managing their child's cancer day to day. As a result of this study, the wording on the oral chemotherapy patient information leaflets has been changed to reflect issues highlighted. A medicines administration chart template and a bullet pointed do's and don'ts list regarding the oral chemotherapy are currently in development; these ...

No abstract