"It goes against the grain" : a qualitative study of the experiences of parents’ administering distressing health-care procedures for their child at home

Background: Parents caring for children with complex and long-term conditions at home take on responsibility for technical health-care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role. Aims: To explore and understand parents’ experiences of administering distressing health-care procedures as part of caring for their child at home. Design: An explorative qualitative study. Methods: A purposive sample of parents who were currently carrying out, or had previously carried out, health-care procedures they thought their child found distressing was recruited. Data were collected using in-depth interviews and analysed thematically. Findings: Administering these procedures was not just a clinical task. That the procedures caused distress for the child meant there were additional issues to consider and address. A major issue for parents was being able to prevent or minimize their child's distress, which in turn was closely linked to parents’ own emotional discomfort in the situation. Parents also had to manage their child's physical and verbal resistance, their own emotional discomfort during the procedure, and the presence and reaction of siblings in the home. The types of support that were valued by parents included advice about managing their child's distress and resistance, occasional assistance with procedures, addressing the emotional aspects of the role, and adequate training and on-going supervision. Conclusion: The “added” challenges of assuming this responsibility have implications for the support of parents caring for ill children at home

Exploring the relationship between access to social care and healthcare utilisation by older adults

Ph. D. ThesisPoor access to social care for older adults is increasingly cited as a key factor driving healthcare demand, yet these claims are often made without evidence. This thesis explored the relationship between access to social care and healthcare utilisation by older adults. A lack of evidence about inequitable access to social care warranted a focus on the role of older adults’ financial resources in this relationship. Two systematic reviews examined evidence about the relationship between access to social care and healthcare utilisation by older adults. An analysis of cohort data from England (Newcastle 85+) explored the role of financial resources in this relationship. A critical scoping review of applying measures of socioeconomic status in older populations supplemented this work. Studies were carried out between 2016 and 2019. Findings confirmed that greater access to social care was associated with lower healthcare utilisation. The findings from the main analysis also hinted that older adults’ financial resources may, to a small degree, moderate this relationship. That is, healthcare use was lower for those with the most financial resources using community social care (coefficient= -0.12, CI:-1.50, 1.26) or living in a care home (coefficient= -1.08, CI:-3.69, 1.52), compared to non-social care users, adjusting for covariates. However, there was much statistical uncertainty in these estimates. The relationship between access to social care and healthcare utilisation may be best understood as a reflection of the mechanisms of care (prevention and substitution), and the conditions of access imposed on each sector (e.g. universalism). These interpretations are located within a theoretical framework that builds upon Andersen’s (1995) model of access to care. The challenges of measuring financial resources in older populations may partly account for why it appeared to exert only a modest influence on this relationship. Further research is needed to understand inequity at the interface between access to social care and healthcare utilisation by older adults.NIHR School for Primary Care Researc

Can general practitioner commissioning deliver equity and excellence? : Evidence from two studies of service improvement in the English NHS

Objectives: To explore some of the key assumptions underpinning the continued development of general practitioner-led commissioning in health services. Methods: Qualitative data from two studies of service improvement in the English NHS were considered against England's plans for GP-led commissioning. These data were collected through in-depth interviews with a total of 187 professionals and 99 people affected by services in 10 different primary care trust areas across England between 2008 and 2009. Results: Internationally, GPs are seen to have a central position in health systems. In keeping with this, the English policy places emphasis on the 'pivotal role' of general practitioners, considered to be ideally placed to commission in the best interests of their patients. However, our evidence suggests that general practitioners do not always have a pivotal role for all patients. Moreover, it is planned that the new commissioning groups in England will not be subject to top-down performance management and this raises the question of how agreed quality standards will be met under the proposed new system. Conclusions: This paper questions the assumption that GPs are best placed to commission health services in a way that meets quality standards and leads to equitable outcomes. There is little evidence to suggest that GPs will succeed where others have failed and a risk that, without top-down performance management, service improvement will be patchy, leading to greater, not reduced, inequity

PATTERNS OF SOCIAL CARE USE WITHIN THE OLDER POPULATION: WHAT CAN WE LEARN FROM ROUTINELY COLLECTED DATA?

Research with routinely collected social care data has untapped potential to inform new care delivery approaches and techniques. To identify opportunities for service improvement and enhance our understanding of care pathways experienced by the older population, we collaborated with a local authority in the North East of England. We set out to characterise the use of social care services and associated outcomes within the local older population (aged 65+). 171,386 records were extracted from the local authority’s social care case management system, relating to 38,191 unique individuals across the last 40 years. We identified the care packages provided to the local population, including care provided in care homes (with and without nursing), private households and assisted living facilities. The study population varied in terms of the number of care packages provided to each individual (median 7 packages, IQR 4-11) and the average duration of individual care packages (median 41 days, IQR 14 - 274 days). The care pathways that are most common amongst the older population will be described, including sequencing and outcomes, and grouped by the reason for providing care (e.g., respite, long-term care) and the reason why each care package ended (e.g., death, returning home). The wide range of care pathways experienced demonstrate the heterogeneity in needs and preferences within the older population. This dataset and analyses are an invaluable way of identifying areas of potential unmet need and evaluating the effectiveness of short-term care services

Variations in older people's emergency care use by social care setting: a systematic review of international evidence.

Older adults' use of social care and their healthcare utilization are closely related. Residents of care homes access emergency care more often than the wider older population; however, less is known about emergency care use across other social care settings. A systematic review was conducted, searching six electronic databases between January 2012 and February 2022. Older people access emergency care from a variety of community settings. Differences in study design contributed to high variation observed between studies. Although data were limited, findings suggest that emergency hospital attendance is lowest from nursing homes and highest from assisted living facilities, whilst emergency admissions varied little by social care setting. There is a paucity of published research on emergency hospital use from social care settings, particularly home care and assisted living facilities. More attention is needed on this area, with standardized definitions to enable comparisons between studies. [Abstract copyright: © The Author(s) 2023. Published by Oxford University Press.

What outcomes are important to people with long-term neurological conditions using integrated health and social care?

Measuring the outcomes that are meaningful to people with long-term neurological conditions (LTNCs) using integrated health and social care services may help to assess the effectiveness of integration. Conventional outcomes tend not to be derived from service user experiences, nor are they able to demonstrate the impact of integrated working. This paper reports findings about outcomes identified as being important to people with LTNCs using integrated services. We undertook qualitative work with five community neuro-rehabilitation teams that were integrated in different ways and to different degrees. In-depth, semi-structured interviews were conducted with 35 people with LTNCs using these teams. Data were collected between 2010 and 2011 and analysed using an adapted version of the Framework approach. We identified 20 outcomes across three domains: personal comfort outcomes, social and economic participation outcomes, and autonomy outcomes. Inter-relationships between outcomes, both within and across domains, were evident. The outcomes, and the inter-relationships between them, have implications for how individuals are assessed in practice

Adverse Outcomes of Polypharmacy in Older People : Systematic Review of Reviews

Objective Polypharmacy is widespread among older people, but the adverse outcomes associated with it are unclear. We aim to synthesize current evidence on the adverse health, social, medicines management, and health care utilization outcomes of polypharmacy in older people. Design A systematic review, of systematic reviews and meta-analyses of observational studies, was conducted. Eleven bibliographic databases were searched from 1990 to February 2018. Quality was assessed using AMSTAR (A Measurement Tool to Assess Systematic Reviews). Setting and participants Older people in any health care setting, residential setting, or country. Results Twenty-six reviews reporting on 230 unique studies were included. Almost all reviews operationalized polypharmacy as medication count, and few examined medication classes or disease states within this. Evidence for an association between polypharmacy and many adverse outcomes, including adverse drug events and disability, was conflicting. The most consistent evidence was found for hospitalization and inappropriate prescribing. No research had explored polypharmacy in the very old (aged ≥85 years), or examined the potential social consequences associated with medication use, such as loneliness and isolation. Conclusions and implications The literature examining the adverse outcomes of polypharmacy in older people is complex, extensive, and conflicting. Until polypharmacy is operationalized in a more clinically relevant manner, the adverse outcomes associated with it will not be fully understood. Future studies should work toward this approach in the face of rising multimorbidity and population aging