Transitions to informal care in Great Britain during the 1990s

Objectives: To estimate annual changes and trends in the population of informal carers and to investigate transitions to caregiving by age, gender, locus of care, and level of involvement. Design: Longitudinal analysis of data from the British household panel survey, 1991 to 1998, an annual prospective survey of a nationally representative sample of more than 5000 private households in England, Scotland, and Wales. Subjects: Over 9000 adults over 16 years interviewed personally in successive waves of the survey, including around 1300 informal carers each year. Results: One third of co-resident carers and 40% of extra-resident carers start caregiving each year and similar proportions cease to provide care. Five year period rates are at least 75% higher than the one year prevalence estimates. Almost everyone is involved in caregiving at one time or another and over half are likely to provide 20 hours or more care per week at some point in their lives. Recent trends indicate that more adults are becoming heavily involved in providing longer episodes of care. Although the onset of caregiving peaks in late middle and early older age, above average incidences span three decades or more of adult life. Age variations in the start of caring relationships are driven by the changing demands for care within and between generations over the life course. There is no firm evidence that carers increase their involvement in caring activities over the first three years of a caring episode. Conclusions: The population of carers is constantly changing as some people stop providing care and others take on a caring role or vary their level of involvement. Policy measures responsive to the diversity of caring roles, and geared around key transitions, are likely to be most effective in supporting carers through changing circumstances. Recognition and support for carers who are heavily involved in caring activities from the outset should be a priority

Estimating the prevalence of unpaid adult care over time

To help fulfil their responsibilities towards unpaid carers, service providers need some idea of the carer’s situation and how many might require support. This paper argues that estimating the prevalence of unpaid care across service planning and budgeting cycles provides a better indication of the size and composition of the carer population than estimates at a point in time. The number of adults providing care at any time during a year is estimated for typical catchments or organisational settings, including social services and primary health care. As well as focusing on carers who are heavily involved in their caring activities, variations in their psychological well-being are assessed to provide an indication of unmet needs for support

Unpaid carers’ access to and use of primary care services

GPs and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A fivefold typology is described covering barriers arising from: professional responses to the carers’ role, the way services are organised and delivered, language or culturally held beliefs and practices, carer or care recipient characteristics, and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals

Solidarity with the Poor? : Positioning the Church of the Nazarene in England in 2003 and 2013

The Church of the Nazarene is committed to identifying with the poor and socially marginalized. This paper investigates how far the Nazarene priority for the poor intersects with the everyday geographies of its local presence in England. Cross-sectional data on the distribution of churches, clergy, and lay office-holders are evaluated against neighbourhood variations in socio-economic deprivation. The extent to which they are based in deprived areas is considered to reflect opportunities for identifying with people in poverty and exercising a ministry of presence. The findings are broadly consistent with the Church’s self-proclaimed responsibility to the poor. Questions arise about the sustainability of that commitment at the local or community level and the Church’s ability to respond pastorally, and act prophetically and politically on behalf of the poor

The Meaning of Funeral Poverty : an exploratory study

A study commissioned by Marie Curie and conducted at the Social Policy Research Unit, University of York, explored the concept of ‘funeral poverty’ and the potential value and feasibility of seeking an agreed definition of meaning. ‘Funeral poverty’ is a relatively recent construct emerging within growing awareness of problems in paying for funerals. The term has quickly become widely used but there is no definition of ‘funeral poverty’ or general agreement of meaning. This study initiated enquiry into how the term was being used, which elements were important, and what would be advantages and disadvantages of an agreed definition

Preferential Places in the Manchester and Stockport Methodist District during the early twenty-first century

Methodism has always placed concern for the poor at the heart of its identity and purpose, yet its local presence and reach is declining. This article examines recent trends in the location of manses and churches against area variations in socio-economic deprivation in one conurbation. Manses are often found in less-deprived neighbourhoods than the churches for which ministers hold responsibility. As churches contract and close, manses are becoming distanced from the most deprived church catchments. These findings raise questions about stationing and ministers’ contribution to a national strategy for evangelism and growth that is focused on engaging marginalized communities

Being good neighbours : placing Methodist manses for ministry

The role and contribution of manses to mission and ministry in contemporary Methodism are largely ignored or taken for granted. This situation may have arisen because manses are primarily private spaces, providing a home for ministers and their families. Such a focus limits consideration of decisions on where best to place manses and the implications for community ministry. This paper examines the locations and neighbourhoods of manses in England, and considers whether and in what ways they allow or constrain mission and ministry. Findings indicate that most manses are not well placed to address Methodist priorities towards communities experiencing poverty and social marginalization

‘Dominant ethnicity’ and the ‘ethnic-civic’ dichotomy in the work of A. D. Smith

This article considers the way in which the work of Anthony Smith has helped to structure debates surrounding the role of ethnicity in present-day nations. Two major lines of enquiry are evident here. First, the contemporary role of dominant ethnic groups within 'their' nations and second, the interplay between ethnic and civic elements in nationalist argument. The two processes are related, but maintain elements of distinctiveness. Smith's major contribution to the dominant ethnicity debate has been to disembed ethnicity from the ideologically-charged and/or anglo-centric discourse of ethnic relations and to place it in historical context, thereby opening up space for dominant group ethnicity to be considered as a distinct phenomenon. This said, Smith's work does not adequately account for the vicissitudes of dominant ethnicity in the contemporary West. Building on the classical works of Hans Kohn and Friedrich Meinecke, Anthony Smith has also made a seminal contribution to the debate on civic and ethnic forms of national identity and nationalist ideology. As well as freeing this debate from the strong normative overtones which it has often carried, he has continued to insist that the terms civic and ethnic should be treated as an ideal-typical distinction rather than a scheme of classification

Clinical features and management of children with primary ciliary dyskinesia in England

Objective In England, the National Health Service commissioned a National Management Service for children with primary ciliary dyskinesia (PCD). The aims of this study were to describe the health of children seen in this Service and compare lung function to children with cystic fibrosis (CF). Design Multi-centre service evaluation of the English National Management PCD Service. Setting Four nationally commissioned PCD centres in England. Patients 333 children with PCD reviewed in the Service in 2015; lung function data were also compared to 2970 children with CF. Results Median age at diagnosis for PCD was 2.6 years, significantly lower in children with situs inversus (1.0 vs 6.0 years, p<0.0001). Compared with national data from the CF Registry, mean (SD) %predicted FEV1 76.8% in PCD (n=240) and 85.0% in CF, and FEV1 was lower in children with PCD up to the age of 15 years. Approximately half of children had some hearing impairment, with 26% requiring hearing aids. Children with a lower BMI had lower FEV1 (p<0.001). One third of children had positive respiratory cultures at review, 54% of these grew Haemophilus influenzae. Conclusions We provide evidence that children with PCD in England have worse lung function than those with CF. Nutritional status should be considered in PCD management, as those with a lower BMI have significantly lower FEV1. Hearing impairment is common but seems to improve with age. Well designed and powered randomised controlled trials on management of PCD are needed to inform best clinical practice