Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson’s disease and their use of digital health to do this

Introduction: Digital health is thought to enable people to better manage chronic conditions, such as Parkinson's. However, little is known about how people from under-represented groups with chronic conditions use digital health to self-manage. Objective: The objective of our study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this. Methods: Semi-structured interviews (n = 18, including four dyadic) were conducted remotely, with 16 people with Parkinson's and six family carers in 2020–2021. Participants were purposively sampled from under-represented groups: belong to an ethnic minority, or having significant physical or sensory impairment. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Three main themes of importance were developed: ‘self-management support’, ‘digital health use to support self-management’ and ‘identity, attitudes and characteristics’. Participants received medical, psychological, social and practical self-management support. Some participants used digital health resources, e.g., Parkinson's UK website. Digital literacy was the biggest barrier to using digital health, regardless of background, often dependant on previous occupation and confidence. Few ethnic minority participants thought race or culture alters self-management ability and most believed there was no need for digital health interventions to be tailored to an individual's race or culture. Some felt inclusivity was important in terms of diverse images of people. A range of considerations were identified to optimise digital health, such as assistive equipment for people with sensory impairment. Conclusions: Barriers to using digital health for self-management were primarily dependent on personal factors including digital literacy and attitudes but rarely race or culture. We recommend the optimisation of digital health interventions by providing assistive technology at low cost, and visual inclusiveness should be promoted by including images of people from diverse backgrounds

Unit Costs of Health and Social Care 2022 Manual

Knowing the cost of specific health and social care services is crucial information for making decisions about what support is provided to those who need help, assisting service providers to plan for the future of their services, and more generally for allocating scarce resources and budgets. To support resourcing decisions, the Unit Cost Programme has been carried out by the Personal Social Services Research Unit (PSSRU) at the University of Kent. They produced the annual cost estimates for the delivery of health and social care services for 29 years. Lesley Curtis, a Senior Research Fellow at PSSRU led the Unit Costs of Health and Social Care programme, alongside Jennifer Beecham, Ann Netten and Amanda Burns. In 2020, Karen Jones, Co-Director of PSSRU, led the programme for two years. The annual publication is freely available online. The work is underpinned by three key principles: 1. The provision of robust, consistent estimates of costs based on economic theory and reflecting the long-run marginal opportunity cost. 2. Comprehensive coverage of available health and social care services, reflective of new service developments. 3. Clarity and accessibility in the presentation of cost estimates. The annual volume included nationally-applicable costs for around 80 health and adult social care services (NHS, local authority, private and voluntary) as well as at least three articles by academics and practitioners each year. Unit costs represents the total expenditure incurred to produce one unit of output in health and social care. For example, the cost of one hour of a nurse or GP’s time, or a face-to-face appointment with a social worker or perhaps a speech therapist. It could also be a week in a residential care or nursing home or the cost of a day care attendance. The consistency, comprehensiveness and robustness of what was produced over time has seen the volumes become a cornerstone of economic evaluations and a resource to inform deliberations among decision-makers. Acknowledgements: The Unit Cost of Health and Social Care contract was completed in 2022. We would like to thank our previous Advisory Group (Ross Campbell, Adriana Castelli, Ciara Donnelly, Sebastian Hinde, Tracey Sach, James Shearer, Adam Storrow and Jonathan White) for their input at our meetings. We would also like to thank colleagues from the Department of Health and Social Care, NHS Digital and the Department of Education who shared the relevant datasets so we can estimate the unit costs. In addition, we received invaluable assistance from Anna Peckham, Sarah Godfrey, Alan Dargan and Ed Ludlow from the University of Kent. Thank you to you all. The Unit Costs of Health and Social Care Programme (2022-2027) In 2022, PSSRU and the Centre for Health Economics (CHE) at the University of York began a new five-year collaboration to continue to estimate unit costs for health and social care and to deliver an annual volume

What is it like for people who care for someone living with dementia?

This post was written by Dr Barbora Silarova (Research Associate at PSSRU, University of Kent), Aakta Patel (Research Adviser, representing Patient and Public Involvement), Della Ogunleye (Research Adviser, representing Patient and Public Involvement), and Dr Stacey Rand (Senior Research Fellow, PSSRU, University of Kent) What do we know about people living with dementia and people who support them? There are currently around 885,000 people living with dementia in the UK [1], of whom 500,000 are women and around 25,000 are from Black, Asian and minority ethnic (BAME) communities [2]. Supporting the people living with dementia in the UK, are around 700,000 spouses, family members and friends (often referred to as ‘carers’)[3]. Between 60 and 70% of carers are women [4]. For families and friends who care for someone with dementia, community-based social care services may allow carers to continue in paid employment and to have time for hobbies, friendships and to stay healthy. Some services, like carer support groups, may also help carers feel more supported and connected with others in a similar situation. Talking to carers, we know that supporting someone with dementia is rewarding and frustrating at the same time, often challenging, especially when juggling different responsibilities, and people worry about the present and the future simultaneously. To understand what the needs of people who support someone with dementia are, and how the social community-based services may improve their quality of life we need a tool to measure this. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that might be affected by social care services (for example, feeling supported, having control over everyday life)

Medicines management at home during the COVID-19 pandemic: a qualitative study exploring the UK patient/carer perspective

Objectives To explore home medicine practices and safety for people shielding and/or over the age of 70 during the COVID-19 pandemic and to create guidance, from the patient/carer perspective, for enabling safe medicine practices for this population. Methods Semi-structured interviews were carried out with 50 UK participants who were shielding and/or over the age of 70 and who used medicines for a long-term condition, using telephone or video conferencing. Participants were recruited through personal/professional networks and through patient/carer organisations. Participants were asked about their experiences of managing medicines during the pandemic and how this differed from previous practices. Data were analysed using inductive thematic analysis. Key findings Patients’ and their families’ experiences of managing medicines safely during the pandemic varied greatly. Analysis suggests that this was based on the patient’s own agency, the functioning of their medicines system pre-pandemic and their relationships with family, friends, community networks and pharmacy staff. Medicine safety issues reported included omitted doses and less-effective formulations being used. Participants also described experiencing high levels of anxiety related to obtaining medicines, monitoring medicines and feeling at risk of contracting COVID-19 while accessing healthcare services for medicine-related issues. Effects of the pandemic on medicines adherence were reported to be positive by some and negative by others. Conclusions Pharmacy staff have a key role to play by establishing good relationships with patients and their families, working with prescribers to ensure medicines systems are as joined up as possible, and signposting to community networks that can help with medicines collection