A WATCHING BRIEF - USE OF A CONSUMER REFERENCE GROUP THROUGHOUT A QUALITATIVE RESEARCH STUDY

A. Rowlands

(University of Newcastle, NSW, Australia)

Overview of the study

The focus of this paper is a three year evaluation study of a pilot project conducted at a community access program for adults with acquired brain injury called Headstart CAP Inc, in Newcastle, Australia. The project was funded by the Motor Accidents Authority of NSW, a state government instrumentality. The project was an intervention known as "Circles of Support", whose objective is to strengthen or create social networks for the focus person and ultimately lead to friendships for the person who is socially isolated through disability.

This paper will briefly outline the study and concentrate on a specific aspect of its design: that of a consumer advisory committee or reference group which was active throughout the whole study. The rationale for setting up the group is explained by a specific theoretical orientation of both understanding and researching disability. My experience of working to a reference group will be addressed as well as implications for the conduct of the study.

The intervention - Circles of Support

A Circle of Support is a network of relationships intentionally built around a specific person, who is the focus of the Circle. The purpose of the Circle is to assist and support this focus person to make desired changes in life. These changes are termed "dreams" in the Circles literature, to distinguish them from goals or plans. This allows for both a clear distinction between Circles and anything resembling clinical rehabilitation by consciously avoiding medical terminology. It also allows for wishes to be changed and the reality that not all "dreams" can be attained. The intervention was located in the policies of deinstitutionalisation, normalisation and inclusion. The scant literature on Circles emphasises their support function (for the person around whom the circle is built) over friendship making (Gold 1995).

Circles of Support as an intervention was replicated throughout disability services in Canada including services for people with acquired brain injury, and in the USA, UK and Australia (Willer et al 1993a, Wertheimer, 1995). While deceptively simple, the concept challenges health professionals as it is in effect a contrived, purpose built friendship network, set up and facilitated by a worker or trained volunteer, to replace or re-invigorate the natural network of a person whose disability may have led to former friends dropping away. The challenge for professionals lies in the non-clinical language and the confrontation of the limits of professional relationships in effectively supporting people with disabilities to participate in their communities in a meaningful way.

The over-riding purpose of Circles is building inclusive communities, enabling people with disabilities to participate fully in their community, contribute their talents, receive support and be accepted as valued community members by building onto or replicating natural networks in the community (Wertheimer, 1995). Due to social change and individual circumstance, such as acquiring a disability, these natural helping networks have either broken down or become ineffective in providing help and support in a reciprocal way. Circles were not envisaged to replace, supplant or compete with statutory or voluntary services in the health and social welfare sector, nor replace the helping functions of individuals' families.

Methodology

The challenge for this evaluation was both to use respected methodology appropriate to the questions posed, and carry out the research process in a way that respected and empowered the people involved. As part of the research question about the effects of Circles of Support, it was essential that any disabling effects of health/ social policy and societal structures were not obscured, and that they could be clearly articulated to interested parties. The process for the focus persons of reflecting on their lost relationships could lead to the misinterpretation that these losses are their fault, rather than acknowledging the barriers to a satisfying social life that are imposed by social structures.

In the study quantitative and qualitative approaches were integrated at a number of points. Knowledge of existing theories and clinical experience of loss of friendships and social support following acquired brain injury, as well as stresses borne by families or carers, influenced the design of both quantitative and qualitative aspects. This information particularly informed my development of hypotheses regarding the effects of the Circles intervention for focus persons and family members.

Methods were triangulated, with comparison and integration of participants' data from the quantitative part of the study, and data from semi-structured in depth interviews. Quantitative results were interpreted through statistical testing, and qualitative data by creating categories from the data and explaining relationships between categories. Findings are discussed with regard to both sets of data: quantitative data was imported into the qualitative data set, and quantitative data further interpreted in the light of the qualitative data. From the data obtained in the study, a theory on the creation and maintenance of friendships and social support after acquired brain injury, is developed. Conclusions and recommendations are derived from the findings and related to current literature.

Hypotheses (see appendix for table of variables and measures)

The hypotheses for this study were as follows:

1. Following the Circles of Support intervention, each Participant will demonstrate, in comparison with pre-intervention levels,

a) a more extensive social network;

b) a more satisfying social network.

This social arena will involve both social relationships in general (extent and quality as measured by the SRS) as well as specific social activities as measured by the SHB: amount of contact with relatives, friends and neighbours (SCONT, SSUPP, SNEIG, SFRIEN, SPHON, SGET); and participation in community groups (SPART, SCHUR).

2. Following the Circles of Support intervention, each Participant will demonstrate a greater degree of community integration following implementation of the intervention. This will involve the arenas of Home Integration, Social Integration and Productivity, as measured by the CIQ.

3. Following the Circles of Support intervention, each Participant will demonstrate improved mood state following implementation of the intervention. Mood state will comprise the factors

a) Tension - Anxiety

b) Depression - Dejection

c) Anger - Hostility

d) Vigour - Activity

e) Fatigue - Inertia and

f) Confusion - Bewilderment.

4. Following the Circles of Support intervention, Family Participants will demonstrate reduced levels of stress. This will be demonstrated by the variables Somatic Symptoms, Anxiety, Social Dysfunction and Severe Depression of the GHQ.

5. Following the Circles of Support intervention, Participants' post injury problematic behaviour will improve, contributing to an increase in their social interaction for the person, and a reduction in stress for the family member or carer. This will be measured using the CBS.

Qualitative data

In depth interviews were conducted with ten focus persons who had participated in the Circles project, a minimum of six months into the life of their Circle. The earliest interview was conducted nine months after the Circle commenced, and the average time period from commencement of intervention to interview was eighteen months. Additionally, a sample of family members, Circle members and Headstart staff including the Circles Project Workers and volunteers, were interviewed. On average, three participants representing these other roles were recruited from each Circle. The full set of paid facilitators was interviewed as well as the volunteer facilitator. Such recruitment proceeded only after obtaining the informed consent of the focus person. In total 41 participants were interviewed. Interviews were conducted over the period January 1997 - March 1999. Kelle (1997) has noted that 40 is the median sample size in qualitative studies, including those using computer software for data management (Kelle, 1997).

Participants by role and gender (qualitative study)

* 3 members were concurrently or recently in a worker/ consumer relationship with the focus person

# 1 volunteer member was a member of 2 different circles

This provided a sample of ten cases, a case equating with a Circle. A case included the focus person, by default the centre of attention in the Circle group, and also the properties and processes of that Circle, and the other participants who could inform me about it, such as family members, (not all of whom were also members of the Circle), Circle members, and workers (facilitators and co-workers in the agency).

Of the 41 individuals interviewed, six were interviewed in dyads (mother - daughter; mother - son; member - member). Two participants, (one facilitator, one co-worker) participated in a second interview one week after their initial interview, because of the amount of material they wished to communicate. Three participants, all related to the one Circle, were interviewed a second time, on average eighteen months after their first interview. This decision was made to capture a longitudinal perspective on the data on one Circle and three individuals, as well as a developmental view of the project as a whole. The three were Owen, the focus person, Anne, a Circle member (volunteer), and Yvonne, his co-worker. This facilitated the construction of a detailed case study.

Role of the Advisory Committee and Ethical Considerations

From the inception of the Circles project, an Advisory Committee was established within the agency Headstart. This Committee comprised: a consumer representative (chairperson, also a focus person), a family representative (whose son with brain injury did not have a Circle), a volunteer representative (who became a volunteer facilitator early in the project), the Co-ordinator of the agency who was also a co-worker for one focus person, a social worker from the local brain injury rehabilitation service, the Circles project worker (ie the paid facilitator), and myself, the researcher. Membership remained stable over the full four years of the project's life, with the sole exception of the project worker position. Six different workers held this position over the three and a half years of the pilot. The position was shared between two workers on a job share arrangement after the first year. This meant that there were four different dyads over this period. This arrangement had interesting effects which space prevents exploring here.

The role of the Committee was to administer the project and report to the overall Management Committee of the agency. The Committee met monthly and received reports from the project worker, approved project decisions, and referred financial decisions to the Management Committee for final approval. Main priorities of the Committee were to:

* consult with consumer and family representatives

* act as a sounding board for the project workers, to discuss ideas and solve problems together

* participate in all stages of the evaluation and discuss reports of findings as these became available from me. This included methodological decisions for both parts of the study, such as experimental design, sampling, instrumentation (these were piloted on a separate consumer), qualitative design, interview themes, key categories in analysis and report writing for the funding body.

Social construction of disability

The theoretical orientation of this study derives from a combination of theories, consciously adopted because they help to explain the circumstances of the Participants: adults with acquired brain injury living in the community and the family members that care for and about them. Theories relevant to this study are the social model of disability, social support and friendship, community integration and inclusion for people with disabilities, and critical theory in relation to Social Work practice. Researching disability from the standpoint of the social model of disability will be discussed in this section, as this perspective informed the decision to set up a consumer reference group.

Social models of disability explicitly informed the design of the study and provided a way of understanding the lived experience of disability. This approach to understanding disability has also spawned a particular approach to researching the interests and concerns of people living with a disability. The value stance implicit in this understanding of disability is consistent with that underpinning interventions built on emancipatory and empowering approaches.

Until relatively recently the medical model was the prominent approach to understanding disability and was influential in the conceptual and theoretical frameworks used in a wide range of disciplines and professions (Munford and Sullivan, 1997). The corollaries of this dominant paradigm have been far reaching. They entailed a focus on treating or curing the bodies or minds of disabled people, viewing them as in need of such treatment and as passive recipients of the treatment. An individualised approach was appropriate with the disabled person expected to comply with a treatment regime and/ or adjust to his/ her limitations. Another corollary of this model was the power vested in medical practitioners to assess a claimant's eligibility for compensation or social security assistance. This infers that a medical assessment would yield hard scientific evidence of the impairment and consequent disability. Bickenbach described this as the most influential practical consequence of the medicalisation of disablement (Bickenbach, 1993). Additionally, the medical model casts the disabled person into the "sick role" but with a twist, as the person is not in a position to recover from the "illness". This leads to tensions of not recovering as a good patient should, and accusations of malingering and dependence (Bickenbach, 1993). The medical model does not adequately consider the dimension of handicap, highlighting as it does issues of difference, deficit and need. "Within the medical model the person's pathology becomes the focus as opposed to their personal attributes and humanness" (O'Brien, 1997).

The social model locates the problem of disability within society. Society's failure to provide appropriate, accessible services for disabled people results in institutionalised discrimination and oppression of disabled people. Under this model, the appropriate role of the medical system is to stabilise the initial condition and treat any ensuing illnesses. Oliver (1996) argues that as disability is a social state it cannot be treated medically, and that many disabled people are oppressed by unnecessary medical intervention. The power accorded the medical system has meant that medical assessments go unquestioned and rehabilitation programs tend to be driven by the medical model, premised on a treatment and restoration approach. Oliver (1990, 1996) and others advocating the social model of disability argue that society is required to make the adjustment, not the disabled individual, and that political empowerment of this group is the way to effect this change.

With respect to the issue of adjustment, Oliver (1990) demonstrates how this has also been subject to the personal tragedy understanding of disability: that there comes a time when the disabled person realises that he/ she has the problem and decides to adjust. From research into the experience of sustaining spinal injury (Oliver, Zarb et al., 1988), Oliver notes that acquiring the injury is incompletely understood from an individual psychological or interpersonal process, "but requires a whole range of other material factors such as housing, finance, employment, the built environment and family circumstances to be taken into account" (Oliver 1990, p 69), viewing these people in effect as "ordinary people coping with extraordinary circumstances" (p 69). This observation resonates with the experiences of people with acquired brain injury.

O'Brien (1997) proposes an empowerment model in her analysis of competing discourses of disability. Drawing on the work of Wolfensberger, O'Brien and O'Brien, McKnight, and Oliver, this model would locate control of services with service users. The philosophy and management structure of Headstart, the agency wherein the present study was carried out, is an example of this model in action, and is exemplified in the function of the consumer reference group. Drake (1992) has also argued for an empowerment model involving consumer participation, requiring a shift of power away from a dominant (able-bodied) group towards the consumers. Building on Lukes' (1974) analysis of power, Drake (1992) argues that genuine consumer participation, consistent with a social model of disability, entails consumers having the capacity to exercise power and having the authority to do so effectively. This requires a genuine redistribution of power within the agency, and careful analysis to ensure that the consumers are not merely acquiescing to the status quo because they have been rendered powerless. This is thought provoking in the context of conducting research in the agency.

The person attributed with having the first Circle of Support, Judith Snow, responded to the invitation to contribute to O'Brien and Murray's book (1997) with a letter, from which the following excerpt is taken:

Until the concept of disability disappears and is replaced by a society that is structured to support everyone's life, relatedness and contribution - until that day my life and opportunities and the lives of every other person who carries the label 'disabled' depend on the goodwill of people in the human service system. Goodwill is no substitute for freedom (O'Brien 1997, p 81).

Researching disability

Patton (1997) argues that an evaluation can be designed to give voice to the oppressed, such that being heard is an end in itself that can stand apart from the findings. Participants' engagement, ownership and self determination are legitimate uses of the evaluation, and the process of engaging in the evaluation can have as much or more impact than the findings generated. While the present study was conducted to ascertain the value of Circles for people with acquired brain injury, its design was participatory and collaborative, involving primary intended users in all aspects of the evaluation, through the Committee. This met the objective Patton (1997) sets out for a utilisation-focused evaluation. Likewise, the present study aimed to ground the data in both consumers' and practitioners' perspectives, with subsidiary aims of "mobilising for social action" (Patton 1997, p101) and teaching evaluation skills to members of the Committee, a diverse group representing consumers, family, volunteers and practitioners. Patton (1997) explicitly links such evaluations with community development practice and social justice initiatives. Theoretical frameworks underpinning these practices as well as community integration practice, such as those developed by Ife (1995), Biklen (1983), and Carling (1995), informed the present study. The values underpinning this perspective were in accord with those of Headstart and myself as researcher. These values were autonomy of the individual, dignity, respect, equality and reciprocity.

While the design and process of the qualitative part of the study implemented many of Patton's (1997) principles for participatory evaluation, there were some limitations. An example is the extent to which participants made major design decisions. Some parameters were set by virtue of the information needs of the funding body. The study incorporated a range of foci: causal, collaborative, diversity, effectiveness, empowerment, longitudinal, outcomes, participatory, process and summative (Patton, 1997). These aspects were reflected in the questions explored in the interviews as well as the overall design and process. The specific intervention was examined in an attempt to discover what it was about the program that had an effect on participants. In this sense, the qualitative study followed the same logic as the quantitative part, identifying the variables that affected outcomes, and revealing the causal assumptions underlying the intervention.

Researching disability from a social model framework

Tracing the development of models for understanding disability from the traditional medical model to a socio-political model, Ward and Flynn (1994) mirror this with the shift from the traditional positivist research paradigm to the interpretive paradigm. Both paradigms however entail research "carried out by relatively powerful experts on relatively powerless 'subjects' " (Ward and Flynn 1994, p 31). These writers argue that an emancipatory research paradigm will bring change in three areas: how funding bodies decide what disability research to support; the relationship between researchers and those who are researched; and the dissemination of findings. Evidence of progress in emancipatory research includes disability researchers using advisory teams with disabled representatives, and researchers incorporating the views and experiences of disabled people (Ward and Flynn, 1994). Both of these were goals in the present study. Ultimately, it is critical that disability research shares its findings with disabled people, raising their consciousness, and influences policy to further empower disabled people.

While the theoretical traditions of emancipatory research are broad, encompassing Marxism, neo-Marxism, feminism, critical theory and the consciousness raising theories of Friere, emancipatory research aims to change the social world, rather than merely study it (Alston and Bowles, 1998). Such research is carried out "in order to reveal how power relations are really operating to control the powerless. In the process, emancipatory researchers aim to liberate, enlighten or empower those people who are subjugated" (Alston and Bowles 1998, p 14). Reality from this perspective is viewed as being defined by the powerful to serve their own interests (Alston and Bowles, 1998).

Building on his explication of the social model of disability, Oliver (1992, 1996, 1999) has articulated a form of research consistent with the model, which he also terms 'emancipatory research' (Alston and Bowles, 1998; Boyles, 1997). He has argued that disability research is usually seen as "a set of technical, objective procedures carried out by experts" on their respondents (Oliver 1992, p 102). He calls on researchers to join with disabled people to challenge the oppression they currently experience in their daily lives. Oliver (1992) recounts a chronology of disability research as being dominated by the positivist paradigm, with its inherent risk of methodological individualism. Similarly, Oliver (1992) criticises research carried out in the interpretive paradigm because of its failure to lead to any significant improvement in the lives of disabled people. While research findings inform the policy making process, the material conditions of disabled people are not immediately improved thereby. Emancipatory research in Oliver's terms would challenge existing power relations, and reveal the ideological structures within which these power relations are located. Emancipatory research empowers people, who can then move forward in redefining the real nature of the problem.

Emancipatory research in the context of disability is that which is designed and carried out by disabled people at the level of setting objectives, deciding on ways to meet those objectives and owning the outcomes. As such, emancipatory research challenges the positivist and postpositivist context within which most disability research is conducted (Boyles, 1997). This approach is also consistent with action research, "research that explicitly recognises its action component ... the idea that change inevitably results from the research process is acknowledged and consciously built into the basic design" (Doyle 1996, p 65). Action research is more political than traditional research because it is public, and helps to explicitly define interests of all participants. Doyle (1996) also highlights aspects of participatory research which include the sharing of control between researchers and participants: control over knowledge, outcomes and learning.

Current disability research is often criticised by feminist researchers. Morris (1992) argues that in feminist research the issues of disability and old age are not considered, or are dismissed because generalising is not possible across different cultures. "Feminism's challenge must remain incomplete while it excludes two such important aspects of human experience and modes of social and economic oppression" (Morris 1992, p 161). She contends that disability research needs to confirm that the grief of disabled people is not failing to come to terms with disability, and that dissatisfaction with life is a healthy response to the experience of oppression. Morris (1992) critiques the social model of disability for tending to deny the personal experience of disability, including illness and pain. She challenges non-disabled disability workers to reflect on whether they can do research which empowers disabled people. Prejudice against and abuse of disabled people, especially in their experience of health services, needs to be highlighted in disability research. Lloyd (1992) and Seymour (1998) highlight shortcomings in the social model of disability from the perspective of disabled women, as it fails to take account of women's issues, including sexuality and sexual identity, child bearing and motherhood, and physical and social aspects of self presentation. Assumptions about sterilisation of disabled women stem from these perspectives on a disabled woman's inability to fulfil the maternal role. Lloyd (1992) cites evidence of lower marriage rates and higher divorce and separation rates for disabled women. In the present study, as previously noted, no Participant (female or male) with brain injury was married or in a long term relationship. Lloyd (1992) argues for the development of a disability model that includes as central women's concerns, as well as a feminist analysis that does not obscure issues of disability. It is necessary for disabled women's concerns to be central to both disability and feminist agendas.

More recently, Oliver (1999) maintains that the objective structures of oppression continue to be ignored in much disability research. He argues that disability researchers are parasites on the bodies of disabled people: without them, this endeavour would not be possible, nor the benefits that accrue to the researchers thereby. He further argues that he, and by inference other researchers, has been the main beneficiary of disability research. While experiential accounts are important, they are insufficient, and Oliver (1999) states that "we still do not have the faintest idea of how to produce collective accounts of collective experience" (Oliver 1999, p 186). Researchers have taken the easy way out, believing that their responsibility stops with the account of the experience; doing something with the account is someone else's problem. Oliver's comments are discomforting, and pertain to the present study: while the best of intentions exist, improvements in the material conditions of the Participants, as a result of the research, are yet to be in evidence. Oliver states that "failing to give disabled people ... complete control over research resources and agendas inevitably positions disabled people as inferior to those who are in control" (Oliver 1999, p 187). For these reasons, he has decided to terminate his research career, arguing that "disabled people and other oppressed groups will no longer be prepared to tolerate exploitative investigatory research based upon exclusionary social relations of research production" (Oliver 1999, p 191).

This leaves me, as an able bodied researcher embarking on the academic phase of my career, reflecting on the ethics of conducting disability research. At best, I have a heightened sense of my responsibility to disseminate the findings; to ensure that these silenced voices are heard. I also carry with me a heightened sense of privilege and responsibility to the participants, and a sense of humility, engendered by hours of working with this group, and learning from them, for four years. I believe that the study has been enhanced by this approach, but then that is only my view.

Appendix:

Table 1: Summary of Variables

References:

Alston, M. and W. Bowles (1998). Research for Social Workers: an introduction to methods. St Leonards, Allen & Unwin.

Bickenbach, J. E. (1993). Physical Disability and Social Policy. Toronto, University of Toronto Press.

Biklen, D. P. (1983). Community Organizing: theory and practice. Englewood Cliffs, Prenctice-Hall.

Boyles, P. (1997) "Emancipatory research models and their role in the field of disability". Human Services: towards partnership and support. P. O'Brien and R. Murray. Palmerston North, The Dunmore Press: 82-96.

Buston, K. (1997). "NUD*IST in action: its use and its usefulness in a study of chronic illness in young people." Sociological Research Online 2(3): <http://www.socresonline.org.uk/socresonline/2/3/6.html>.

Carling, P. J. (1995). Return to Community: building support systems for people with psychiatric disabilities. New York, The Guilford Press.

Doyle, R. (1996). "Breaking the solitudes to improve services for ethnic groups: action research strategies". The Reflective Researcher: Social workers' theories of practice research. J. Fook. St Leonards, Allen & Unwin: 55-69.

Drake, R. F. (1992). "Consumer participation: the voluntary sector and the concept of power." Disability, Handicap & Society 7(3): 267-278.

Gold, D. (1995). Attempts to create relationships in the lives of students with disabilities: the case of "circles of friends". Unpublished doctoral dissertation in Special Education. New York, Syracuse University.

Ife, J. (1995). Community Development: creating community alternatives - vision, analysis and practice. Melbourne, Longman.

Kelle, U. (1997). "Theory building in qualitative research and computer programs for the management of textual data." Sociological Research Online 2(2): <http://www.socresonline.org.uk/socresonline/2/2/1.html>.

Lloyd, M. (1992). "Does she boil eggs? Towards a feminist model of disability." Disability, Handicap & Society 7(3): 207-221.

Lukes, S. (1974). Power: A Radical View. London, Macmillan.

Morris, J. (1992). "Personal and political: a feminist perspective on researching physical disability." Disability, Handicap & Society 7(2): 157-166.

Munford, R. and M. Sullivan (1997). "Social theories of disability: the insurrection of subjugated knowledges". Human Services: Towards Partnership and Support. P. O'Brien and R. Murray. Palmerston North, The Dunmore Press: 17-33.

O'Brien, P. (1997). "Human Services: creating or alleviating disability?" Human Services: Towards Partnership and Support. P. O'Brien and R. Murray. Palmerston North, The Dunmore Press: 64-81.

O'Brien, P. and R. Murray, Eds. (1997). Human Services: Towards Partnership and Support. Palmerston North, The Dunmore Press.

Oliver, M. (1990). The Politics of Disablement. Basingstoke, Macmillan.

Oliver, M. (1992) "Changing the Social Relations of Research Production?" Disability, Handicap & Society, 7, 2, pp 101-14.

Oliver, M. (1996). Understanding Disability: From Theory to Practice. Basingstoke, Macmillan.

Oliver, M. (1999). "Final accounts and the parasite people". Disability Discourse. M. Corker and S. French. Buckingham, Open University Press: 183-191.

Oliver, M., G. Zarb, et al. (1988). Walking into Darkness: The Experience of Spinal Cord Injury. Basingstoke, Macmillan.

Patton, M. Q. (1990). Qualitative Evaluation and Research Methods. Newbury Park, Sage.

Patton, M. Q. (1997). Utilization-Focused Evaluation: The New Century Text. Thousand Oaks, Sage Publications.

Seymour, W. (1998). Remaking the Body: rehabilitation and change. St Leonards, Allen & Unwin.

Ward, L. and M. Flynn (1994). "What matters most: disability, research and empowerment". Disability is not Measles: New Research Paradigms in Disability. M. H. Rioux and M. Bach. Ontario, L'Institut Roeher: 29-48.

Wertheimer, A. ed (1995) Circles of Support: Building inclusive communities. Bristol, Circles Network UK.

Willer, B., Allen, K., Anthony, J. and Cowlan, G. (1993a) Circles of Support for Individuals with Acquired Brain Injury. Manual published by Rehabilitation Research and Training Center on Community Integration of Persons with Traumatic Brain Injury, Buffalo, New York.