Informal support is a vital part of diabetes care, for adolescents in particular. However, we have a poor appreciation of how adolescents characterize informal support relationships, and how they change over time. This article is based on qualitative, in-depth interviews and focus groups with 21 adolescents (14-19 years old) in Leicestershire. We studied the content and substance of relationships between adolescents with diabetes and their families and friends, how they change and develop over time, and how they interact with formal support from health professionals. We identify a key problem--progressive independence from family life and progressive withdrawal of formal health service input leaves some older adolescents feeling isolated, with possible implications for likely maintenance of contact with routine services.
Accessible summary Sleep hygiene education (SHE) is a “behavioural” intervention which helps parents create the best sleeping conditions for their child. It is often used to improve sleep problems that children with developmental disabilities have. SHE includes advice around creating bedtime routines, creating a calming bedroom environment and eating healthily. Lots of health and social care professionals use SHE, but there are not many research papers which show the best way to support parents to try out the advice. This research tells the story of nine parents and eleven professionals who have used SHE to help improve children’s sleep problems. Their experiences are important in the research literature and will help services such as community children’s learning disability teams improve the way SHE is used in the future. Abstract BackgroundSleep hygiene education (SHE) is a familiar intervention for addressing behavioural sleep problems in children with developmental disabilities that involves advising parents on sleep‐promoting behaviours; however, it is supported by a limited evidence base. Materials and methodsThis exploratory study aimed to enhance qualitative understanding and explore stakeholder perceptions about experience, current practice and ideas around the implementation of SHE. Parents of children with developmental disabilities and sleep problems (N = 9) and sleep practitioners (N = 11) took part in semi‐structured interviews and focus groups, and data were thematically analysed. Results and discussionThe analysis identified four parent themes: Beliefs about sleep problems; Getting professional help; Ways of knowing about sleep; and Visions of sleep support. Two practitioner themes were also identified: Sleep service accessibility and Inconsistent sleep support. ConclusionThe findings provide further insight into how parents of children with developmental disabilities experience sleep problems, and how SHE is currently implemented. These have implications for both policy and practice.
This qualitative study develops a programme theory demonstrating the complexity embedded in sleep hygiene education (SHE) as an intervention to improve sleep problems in children with developmental disabilities (DD). In co-design workshops, eight parents and six sleep practitioners deliberated discussion themes developed from a thematic analysis of exploratory study data, guided by a 'trigger' podcast illuminating parents' narratives of SHE. A SHE tool underpinned by programme theory abstracted to mid-range theories of change was developed. Analytical themes were proposed: the need to enhance the legitimation of children's sleep problems and consider the nature of customisation, knowledge sharing, health expectation and impact of sleep service rationing and gaming strategies on implementation success. Policy and practice implications include a need to raise the public profile of children's sleep problems and promote parental involvement in intervention implementation. Further research is needed to test out this theory-driven framework for evaluating SHE.
Health visitors and children's nurses can do much to help families prevent the development of sleep problems in children with and without disabilities, and to treat existing disorder. Sleep difficulties among children with learning disabilities are common and receive inadequate attention in most practitioners' training. This needs to be urgently addressed because untreated issues may persist into adulthood. A sound knowledge of sleep theory, the increasing literature on sleep, and the high quality sleep practitioner training that is available can all support health professionals in this role. Working in partnership with the family and carers is fundamental to success. Specialist services such as children's learning disability nursing teams, child and adolescent mental health services and sleep centres can assist with complex cases.
I feel sad for the nurse who was sacked for praying for a patient. Whatever happened to freedom of speech? What is wrong with offering to pray with patients? I pray this nurse finds a job where people appreciate her.
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