The information needs of informal carers

Abstract

This thesis is concerned with the information needs of informal carers, or, as they are now increasingly referred to, carers
Within this thesis, the appellation carer is defined in terms chosen by carers themselves. In their words,
• A carer is someone whose life is restricted by the need to assist another person to live independently at home.
Information is similarly defined by reference to the perspective of the carers, whose information needs form the topic of this research. For the purposes of this thesis, therefore, information is defined as follows
• information is all knowledge, ideas, facts and data which are communicated in any format either formally or informally, and
which, for whatever reason, are needful for carers to know. Information has been identified as a key requirement by most of the surveys undertaken of carers since 1988. Most surveys of carers and their needs have noted the absence or deficiency of this critical resource; yet relevant information is prolific, and accessible through a multiplicity of mechanisms and formats.
This thesis set out to answer four important questions:
• Why, when information appears to be so widely accessible, do carers continue to assert that lack of information remains one of their key problems?
• What is the role of workers and other professionals in information provision to carers?
• What changes to current information provision and dissemination would remove the obstacles to carers obtaining the information they need?
• Is there a role for the public library service in either creating or overseeing the provision of an information strategy for carers?
These questions were examined within a Leicester-based study of a group of carers of older people, and carers who were themselves older people, during the period 1994-1996. The study followed a qualitative methodology and used a number of methods. The chief of these entailed the researcher, in her professional role as Community Care Librarian, acting as a critical friend, that is one, who through understanding the context of the presenting situation, is able to offer a helpful critique, a valued judgement and an honest response. This approach elicited a wealth of qualitative data through telephone
contact with carers on a regular and frequent basis during a period of fifteen months. The study also included a sample of workers and potential information providers, already having professional responsibilities in the households of the participating carers and who were involved through a series of focused semi-structured interviews.
The workers represented a range of health, social services and voluntary sector teams and organisations.
The data obtained from this study was particularly rich and subtle, providing unexpected insights into considerably more than information provision, as well as confirmation of certain conjectured findings. For example, the results indicate that the carers in the study were proactive information seekers, rather than passive recipients of information despite having poor formal and informal information networks. As a result, they were almost entirely dependent upon the professional workers as sources of information. Because of restrictive multi-disciplinary and inter-agency working and a lack of systematic and effective information support, workers were unable to fulfill all the carers' expectations in this regard.
The study would indicate a crucial role for an agency able to devise an effective information strategy, suitable to meet not only the needs of carers, but also of others similarly disadvantaged in information provision. Such an agency could itself act as an holistic information provider, or else take responsibility for overseeing such a service. In the perception of the study participants the public library service, in theory uniquely placed to fulfill such a role, held a low profile as an information provider. If such an opinion were to be confirmed amongst the general population, it would seem that this role could not
automatically be assigned to public libraries. However, the availability of insufficient evidence to either corroborate or refute such an opinion resulted in this particular research question remaining unanswered.