"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

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.

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

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

Caring for older people as a social determinant of health: findings from a scoping review of observational studies

Background: Unpaid care is a critical source of support for people with health and social care needs. Unpaid carers are a group facing increasing demands and are at risk of adverse outcomes. Objectives: To assess the breadth of evidence on older carers/carers of older people in UK cohort studies. Methods: Using scoping review methods, we developed a targeted search strategy in three bibliographic databases (Medline, PsycInfo and CINAHL) for studies reporting carer characteristics and outcomes. Data were mapped using Evidence for Policy and Practice Information (EPPI) Reviewer, a web-based programme for managing and analysing data in reviews. The impacts of caring were explored and synthesised. Findings: Eighty-five studies were included. Where studies examined the impact of caring, outcomes were typically health-related; findings were inconsistent. Fewer studies reported the socioeconomic, disability-related, quality of life, or social impacts of caring. Fewer than half of studies reported subgroup analyses or care recipient information, and only five studies stratified carers’ outcomes by a measure of socioeconomic status. Limitations: Relying on data from observational studies means that key outcomes or caring pathways may be overlooked due to data collection methods. We therefore cannot infer causation/reverse causation regarding caring and carer outcomes. Implications: Our work highlights specific gaps in evidence regarding the social, economic, health and quality of life outcomes for carers. We also suggest methodological considerations to improve our understanding of care recipients, carers’ trajectories, and those at greatest risk of adverse outcomes. This information is vital to the development of research design, policies and interventions to support carers’ wellbeing

Measuring older people’s socioeconomic position: a scoping review of studies of self-rated health, health service and social care use

Background The challenges of measuring socioeconomic position in older populations were first set out two decades ago. However, the question of how best to measure older people’s socioeconomic position remains pertinent as populations age and health inequalities widen. Methods A scoping review aimed to identify and appraise measures of socioeconomic position used in studies of health inequalities in older populations in high-income countries. Medline, Scopus, EMBASE, HMIC and references lists of systematic reviews were searched for observational studies of socioeconomic health inequalities in adults aged 60 years and over, published between 2000 and 2020. A narrative synthesis was conducted. Findings One-hundred and thirty-eight studies were included; 20 approaches to measuring socioeconomic position were identified. Few studies considered which pathways the chosen measures of socioeconomic position intended to capture. The validity of subjective socioeconomic position measures, and measures that assume shared income and educational capital, should be verified in older populations. Incomplete financial data risk under-representation of some older groups when missing data are socially patterned. Older study samples were largely homogeneous on measures of housing tenure, and to a lesser extent, measures of educational attainment. Measures that use only two response categories risk missing subtle differences in older people’s socioeconomic circumstances. Conclusion Poor choice of measures of socioeconomic position risk underestimating the size of health inequalities in older populations. Choice of measures should be shaped by considerations of theory, context and response categories that detect subtle, yet important, inequalities. Further evidence is required to ascertain the validity of some measures identified in this review

Outcome domains and outcome measures used in studies assessing the effectiveness of interventions to manage non-respiratory sleep disturbances in children with neurodisabilities: a systematic review

Objectives: To assess whether a core outcome set is required for studies evaluating the effectiveness of interventions for non-respiratory sleep disturbances in children with neurodisabilities. Design: Survey of outcome measures used in primary studies identified by a systematic review. Data sources: ASSIA; CENTRAL; Cochrane Database of Systematic Reviews; Conference Proceedings Citation Index; CINAHL; DARE; Embase; HMIC; MEDLINE; MEDLINE In-Process; PsycINFO; Science Citation Index; Social Care Online; Social Policy & Practice; ClinicalTrials.gov; WHO International Clinical Trials Registry Platform (ICTRP); and the UK Clinical Trials Gateway were searched up to February 2017. Eligibility criteria: Studies evaluating pharmacological or non-pharmacological interventions for children (≤ 18 years old) with a neurodisability and experiencing non-respiratory sleep disturbance. Data extraction and synthesis: Outcomes related to child and parent sleep-related outcomes; measures of perceived parenting confidence, efficacy or understanding of sleep management; child-related quality of life, daytime behaviour and cognition; parent/carer outcomes; and adverse events were listed from each study and categorised into domains. Results: Thirty-nine studies (13 melatonin and 26 non-pharmacological) assessed five core outcome areas: child sleep, other child outcomes, parent outcomes, adverse events and process measures. There were 54 different measures of child related sleep across five domains: global measures; sleep initiation; maintenance; scheduling; and other outcomes. The most commonly reported measure in melatonin studies was total sleep time (n=12; 92%); and for non-pharmacological studies was the parent-reported Child Sleep Habits Questionnaire (CSHQ; 58%), both classified as global measures. Fifteen non-pharmacological (58%) and four pharmacological studies (31%) reported child outcomes other than sleep. The domains assessed (using 29 different measures) were child behaviour, quality of life, ADHD symptoms, cognition, school-related, and other. One pharmacological and 14 non-pharmacological (54%) studies reported parent outcomes (17 different measures). Eleven melatonin studies (85%) recorded adverse events, with variation in how data were collected and reported. One non-pharmacological study reported an explicit method of collecting on adverse events. Several process measures were reported, related to adherence, feasibility of delivery, acceptability and experiences of receiving the intervention. Conclusions: There is a lack of consistency between studies in the outcome measures used to assess the effectiveness of interventions for non-respiratory sleep disturbances in children with neurodisabilities. A minimum core outcome set, with international consensus, should be developed in consultation with parents, children and young people, and those involved in supporting families. Registration number systematic review PROSPERO (CRD42016034067