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An exploratory study of the consumers'views of carer support groupsALISON MORTON RGN, RHV, DNUndergraduate BSc Community Nursing, King's College London, UK

ANN MACKENZIE RGN, DN, RNT, MA, PhDLecturer in Nursing, King's College London, UK

Introduction

The last 10 years have seen an increased awareness of theissues of informal eare. There is extensive research litera-ture on the experiences of caring (Parker, 198.S; Nolan &Grant, 1989) and the lack of services to meet carers' needs(Twigg et al.., 1990) However, in terms of carer supportgroups, there is no research evidence about the extent towhich carers perceive these initiatives as helpful, or theirbenefits to the consumer. Indeed published anecdotalreports of such initiatives suggest that they are often seenas inappropriate by carers.

Aims

This paper explores the consumers' views of carer supportgroups, ! ,

Objectives

• To explore the group members' perceptions of thecaring role and reasons for joining the group,

• To explore the group members' perceptions of thebenefits of attending the group, R'̂ i < ;

Methods

The study followed an ethnographic mode of enquiry. Thesample comprised key informants/participants from twocarer support groups in one health unit. Group A had beenmeeting for 8 years and Group 13 for 6 months. Data werecollected by tape recording semi-structured interviewswith five informants from each group plus two additionalinformants from Group A as a pilot study. Data from all

informants were used in the analysis. Conceptually linkeddomains were compiled from the transcripts using theliterature as a framework.

Results

The findings supported the literature concerning theemotional and physical burden of caring and was the mainreason for' group membership. Additionally, the studysuggested that these carer support groups were of value toparticipants. The main perceived benefit, evident in bothgroups, was mutual support. It included the followingdomains: . ; ^• being amongst people in similar situations who will

listen;• sharing advice with carers of different illnesses;• gaining respect from people who understand;• knowing that you're not alone.

The concept of social support was also described,including: '• the opportunity to meet people and 'have a chat';• the opportunity to 'get out'. This links with the fre-

quently expressed feelings of social isolation which wereperceived as a source of emotional burden. J-Information resource was another concept and included

information about services, the practicalities of caring andinformation about stress and relaxation.

Members of Group A also described how the group hadenabled them to look beyond the primary caring relation-ship and acknowledge their own needs as carers, such asthe regaining of self-confidence and broadening of inter-ests. Furthermore, they described with fervour how theywanted to 'lobby for change' by raising the profile of carersin order to eftect changes in service provision.

Implications for professionals

The findings suggest that providing mutual and socialsupport are central to the perceived benefits of groupmembers. Hence it is important to allow time for this todevelop. In addition, advertising highlighting these bene-fits can be used as a focus for attracting new group

63

64 Research in Brief '

members. The findings also suggest that the needs ofgroup members change as their primary needs of thecaring role are met. Carers are then able to derive addi-tional benefits from the group: self-awareness, social sup-port networks outside the group, and forum for lobbyingfor change. Furthermore, the findings suggest that carersvalue the contributions of professionals, in particular asense of being 'cared for', support following bereavementand an information resource. Finally, a number of barrierswere revealed which prevented group membership, such aspersonal lack of recognition of carer status, negative viewsof the dependant and lack of transport and sitter services.These need to be addressed when inviting potential groupmembers.

The results of this study are relevant to the context in

which it was undertaken and offers suggestions for profes-sionals seeking to establish similar services. The last wordis left to one of the group members. 'I really and trulythink I would have gone mad if it hadn't been for thesupport the group gave me. I think all carers need someoneto care for them too.'

References

Nolan M. R. & Grant G. (1989) Addressing the needs of informalcarers: a neglected area of nursing practice. Journal of AdvancedNursing. 14,950-961.

Parker G. (1985) With Due Care and Attention: A Review (if Researchon Informal Care. I'amily Policy Studies Centre, London.

Twigg J., Atkin K. & Pcrning C. (1990) Carers and Services, HMSO,London.

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