'There was nothing, just absolute darkness': Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study.

BACKGROUND: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. METHODS: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. RESULTS: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. CONCLUSIONS: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

Needs, concerns and self-management experiences of people with type 2 diabetes during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Type 2 diabetes is associated with increased COVID-19 severity. Little is understood about the needs, concerns and self-management experiences of people with type 2 diabetes during the COVID-19 pandemic. AIM: To examine the lived experiences of people with type 2 diabetes during the COVID-19 pandemic. METHOD: This qualitative study recruited people with type 2 diabetes from the SOUth-London Diabetes (SOUL-D) cohort. Semi-structured interviews via telephone were conducted between September 2020 and January 2021. Deductive thematic analysis derived themes from the data to explore needs, concerns and self-management experiences of people with type 2 diabetes. RESULTS: Twenty-nine people with type 2 diabetes were interviewed. Three themes with subthemes were outlined: (1) information needs of people with type 2 diabetes during the Covid-19 pandemic, (2) concerns about Covid-19 from people with type 2 diabetes and (3) diabetes self management and well-being during the Covid-19 pandemic. CONCLUSION: During a pandemic, there is a need for consistent, diabetes-specific, messaging from healthcare professionals for people with type 2 diabetes. People with type 2 diabetes need support to access digital resources to aid remote communication. Future research could help develop recourses to prevent social isolation and loneliness for people with type 2 diabetes during a pandemic.