Academic journal article Journal of the Statistical and Social Inquiry Society of Ireland

Using Administrative Data to Change Perception about Caregiving and Improve the Evidence Base Related to Volunteering

Academic journal article Journal of the Statistical and Social Inquiry Society of Ireland

Using Administrative Data to Change Perception about Caregiving and Improve the Evidence Base Related to Volunteering

Article excerpt

1. INTRODUCTION

The primary function of this paper is to demonstrate how the availability and analysis of large administrative datasets can be used to undertake the definitive studies needed to dispel persistent and commonly held beliefs that have arisen about caregivers and volunteers. In passing we will also show how these data allow novel research questions to be asked and approaches to be derived--for example, in relation to rare health outcomes, or in using the extant data structures to utilise the detail of relationships within families; and lastly, to show how these innovations can generate policy-relevant answers based on robust research. Finally, we will provide some counterbalance and review the limitations of the current data, and conclude by making suggestions for improvement in future censuses.

2. POLICY RELEVANCE

The studies are thematically linked and focus on prosocial activity - people involved in volunteering and informal caring (or caregiving as it is now more often called). Given what may be a developing crisis in social care at the UK national level, these activities are increasingly being advocated or relied upon by government to provide a voluntary system of care--something that in itself puts research of this type at the heart of policy relevance. The term informal caregiving describes those who provide (without pay) care or assistance to people who are ill or need help with personal activities of daily living. Volunteering, according to the UN definition [1], is an activity with at least three elements - it is not primarily for profit; it is undertaken freely; and should benefit others (however, many also limit the activity to organised settings, some exclude help given to family members, and others suggest that recognition be an additional defining characteristic). There is therefore some ambiguity in the most widely used definitions of volunteering [2] and an element of overlapping misclassification with caregiving [3] is possible - for example, in the provision of assistance to non-family members, or other types of non-organised helping. One final point to note is that, although similar in that they represent different types of helping behaviours, they are perceived very differently by the public, especially in relation to their presumed effects on health.

The difficulties experienced by caregivers was highlighted in a recent report from AgeUK [4] and further elaborated in a subsequent Lancet editorial entitled 'Who cares for the carer?'[5]. These articles summarise the huge contribution made by caregivers and emphasise that many are doubly vulnerable as they are both likely to be elderly and in poor health. They conclude that the pressures on caregivers are likely to increase in forthcoming years as the population ages and formal caregiving services come under greater financial pressures. However, the perceived picture of caregiving is one associated with significant levels of stress and burden which have deleterious effects on the caregiver's wellbeing [6-10] and the apotheosis of this narrative was a paper in 1999 from Schulz and Beach showing that caregiving was a significant risk factor for mortality [11]. This paper struck a chord with the caregiving stakeholder community and with the related research community where it has been cited over 3,000 times in other academic papers. But is this picture correct? The Schulz and Beach study was small and based on a selected group of caregivers, with a debateable control or reference group. To provide a more definitive description of the relationship between caregiving and mortality we must turn to linked administrative data, but first we will describe our data sources and associated methods.

3. METHODOLOGICAL APPROACH

In this section we introduce in some detail the questions on caregiving (2001 and 2011 UK Censuses) and volunteering (2011 Census) and outline their potential as elements in this more dynamic scenario, especially when compared to the more traditional methodologies (for example, general population surveys or specifically targeted surveys). …

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