Involving older people in community-based research: Developing a guiding framework for researchers and community organisations

Authors

  • Jeni Warburton,

    1. Australasian Centre on Ageing, The University of Queensland, Brisbane, Queensland, Australia
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    • *

      Present address: John Richards Initiative into Rural Aged Care Research, La Trobe University, Albury-Wodonga, Vic. 3689, Australia

  • Helen Bartlett,

    1. Australasian Centre on Ageing, The University of Queensland, Brisbane, Queensland, Australia
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    • Present address: Office of the Pro Vice-Chancellor, Monash University, Gippsland Campus, Churchill, Vic. 3842, Australia

  • Matthew Carroll,

    1. ARC/NHMRC Research Network in Ageing Well, Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia
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  • Hal Kendig

    1. ARC/NHMRC Research Network in Ageing Well, Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia
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Correspondence to: Dr Matthew Carroll, ARC/NHMRC Research Network in Ageing Well, C/- Centre for Education and Research on Ageing, Concord Hospital. Email: m.carroll@usyd.edu.au

Abstract

The purpose of this paper is to outline the development of a guiding framework for both researchers and community organisations seeking to involve older people in research. Such a framework is needed to facilitate good quality, multidisciplinary research that can be used to inform policy and practice responses to the challenges of ageing. There is increased recognition that involving older people in the research process can lead to increased benefits for all involved. The guidelines outlined below put forward the following six principles: (i) acknowledge research as a process; (ii) clarify roles and levels of involvement; (iii) communicate effectively; (iv) recognise different expectations; (v) recognise difference; and (vi) ensure representativeness and diversity. These guidelines are now being promoted through the ARC/NHMRC Research Network in Ageing Well and collaborating stakeholder organisations that will be working together to implement these principles in future research involving older people.

Introduction

The purpose of this paper is to present a guiding framework for both researchers and community organisations seeking to involve older people in research. The framework was developed in conjunction with researchers, community organisations, older individuals, service providers and policy-makers, and is based on the findings from a series of collaborative workshops undertaken by the ARC/NHMRC Research Network in Ageing Well during 2006 and 2007.

Population ageing has become a priority area for governments, and the framework was developed to facilitate good quality, multidisciplinary research that can be used to inform ageing policy and practice. There is an urgent need to fill some of the gaps in our knowledge. At the same time, there is increased recognition that the best research outcomes are achieved when researchers collaborate with the community and gain input from those who are living the phenomena under study, that is, older people themselves [1].

Researchers are increasingly aware that involving older people in their research endeavours will improve the quality and applicability of their research. At the same time, they are also experiencing external funding pressures to develop partnerships across all community-based research. A partnership approach is fundamental to many government and non-government funding bodies including the National Health and Medical Research Council (NHMRC) [2] in Australia and the National Health Service in the UK, where public input is sought in setting research priorities and in the commissioning, undertaking and dissemination of research [3].

The rhetoric of participation is everywhere, and many individuals and groups are also demanding a say in the research that affects their lives [4,5]. A growing number of advocacy and community groups, as well as service providers, are recognising that their submissions to governments are more likely to be accepted if they are supported by systematic research evidence [1]. A recent review of participatory research suggests that involving older people in research has an empowering effect with the capacity to improve their political engagement [6].

Despite the growing awareness of the need for partnerships in ageing research, there is only a limited literature exploring how stakeholders in ageing research can best work together. There is agreement that involving the community in research is not an easy process, particularly if it is to be more than simply tokenistic [6–9]. Involvement is complex, raising important ethical, philosophical and practical challenges [7]. This topic thus merits further investigation in the Australian context, which is the intention of the present paper.

Involvement of older people in research

In developing partnerships and involving older people in research, it is first important to consider whether there is a need for specific guidelines in this area, particularly as there is already a range of existing guidelines for community-based research. These include both generic guidelines, such those jointly developed by the NHMRC and Consumer's Health Forum [2], as well as more specific ones, such as guidelines for working with indigenous participants [10]. However, there are perhaps three key reasons for arguing that ageing research is a special case. First, as noted above, Australia is experiencing rapid demographic ageing which is a priority research area for governments (as seen in the ‘Ageing Well, Ageing Productively’ National Research Priority Goal Area). Second, ageing research has shifted from a focus on aged care, poor health and frailty, to cover a broader research agenda. This has brought new researchers to the field as well as new community organisations and advocacy groups interested in knowing more about ageing. Third, the involvement of older people in research requires particular consideration of key issues such as involving those who may be frail or vulnerable or, because of their age, may have very disparate world views from those of the researchers. These points all suggest the need for guidelines to address this growing field of research practice.

In general, the complexities and challenges associated with involving older people in research are well documented in the literature [6–8]. Early evidence provided in the review by Fudge et al. [6] highlights the following positive outcomes of involving older people in research: greater understanding of the needs of older people; identifying research questions that would otherwise not have been considered; and a belief expressed by research participants that they had been ‘listened to’.

A set of principles is needed to guide the process [8]. Older people can be marginalised through vulnerability or frailty [11,12] and ageism can impede their opportunities for involvement [8,11]. The needs of other marginalised groups, such as people from culturally and linguistically diverse backgrounds, have been recognised in with a set of ethical guidelines drawn up [13]. This paper is the first attempt to do the same for older people.

Methodology

The intention of this work was to develop a guiding framework for both researchers and community organisations, and had two distinct aims. First, we aimed to develop a framework utilising the research and user involvement literature, as well taking input from a broad range of stakeholders in ageing. Second, we aimed to ensure the appropriateness of the framework in the Australian context through an iterative process of discussion and consultation. The intention was to develop and then promote this framework through the Ageing Well Network and through the collaborating stakeholder organisations.

To meet these two aims, it was important that the process of developing appropriate guidelines met the needs of all appropriate stakeholders, including researchers, community organisations, advocacy groups, service providers, policy-makers, as well as older individuals, their carers and families. A series of workshops was thus organised, with the process steered by a collaborative group including the authors and key members of national organisations in ageing.

The need for guidelines was first identified through a workshop held in July 2006 (Workshop 1) in Canberra convened by the Ageing Well Network and the National Seniors Association at the Building Ageing Research Capacity (BARC) Policy and Practice Colloquium on Ageing. The workshop involved over 30 participants including executives from ageing stakeholder groups, researchers and policy-makers. Dr Rick Moody, director of Academic Affairs at AARP (the leading organisation for people aged 50 and over in the USA), acted as a discussant for the workshop. The lively discussion suggested a variety of different perspectives relating to collaboration in research (see http://www.ageingwell.edu.au/net_operate_capacity_policy.htm for more details). In a more serendipitous process, issues relating to the purpose of ageing research were raised at a meeting in Queensland between seniors groups and postgraduate students. The decision was thus made to attempt to build consensus around the purpose and process of research in ageing from the perspective of different stakeholders.

Two further workshops were thus organised, sponsored by the Ageing Well Network. The first of these (Workshop 2) was convened by the Australasian Centre on Ageing at the University of Queensland in December 2006. This was attended by 23 participants including local university researchers, key community members and representatives of local seniors’ organisations, and focused on the expectations different stakeholders have from the research process, facilitators and barriers to meet these expectations, and ways to improve practice. The end result was agreement on a set of guiding principles intended to form the basis for the development of guidelines. These principles included: the need for integrity in both researchers and the ageing community; explanation of the relevance and extent of the research project; clear communication of the study and its methods; appropriate terminology; and recognition of diversity (see http://www.ageingwell.edu.au/download/feb_07/Research_Relationship_Workshop_Report.pdf for more details).

A national workshop (Workshop 3) was then convened by the Ageing Well Network and the National Seniors Productive Ageing Centre in Melbourne in May 2007. This workshop was attended by an invited group of 28 key researchers, heads of major constituency groups, and representatives of older people including members of the National Seniors Association. The workshop aimed to build on the previous activities and to develop further best practice guidelines for collaborative research. The workshop commenced with a series of short presentations on collaborative research from the perspective of a researcher, a service provider, and the head of the Carers Australia advocacy group, who highlighted issues relevant to carers and families (see http://www.ageingwell.edu.au/links_resources_3.htm for more details).

The two lead authors were then commissioned with the task of developing workshop findings into draft guidelines, which were then circulated widely by the workshop team for further discussion and agreement. The guiding framework described below is the end result of this process. It comprises six key areas for consideration by researchers and seniors’ organisations seeking to work in partnership in community-based research in ageing.

Guidelines for involving older people in research

Acknowledge research as a process

The first principle for involving older people in research is to acknowledge that research is a process with different stages and levels of involvement. Older people and their organisations can provide input throughout the stages of research, from developing priorities and research questions, to discussions about the methodology and approach, interpretation of findings and promotion of research outcomes.

The first step in any research project is establishing an appropriate process and developing a clear outline of the purpose of the research. Workshop 2 participants agreed that community members can be far more than just passive subjects of research. For example, community members can participate in the research process through involvement in panels or advisory groups, such as the Consumer Review Panel set up by The Cancer Council NSW [14].

However, there were concerns expressed in Workshop 1 that community members may lack the skills to drive research projects and as a result may be likely to be unequal partners in research endeavours. Training may well be required to enable older people to participate in research, including as peer interviewers [6] or as informed subjects [15]. Participatory research models can be empowering for older people if appropriate training and support are provided. As noted by Bass and Caro [16], ‘Older people can play a significant role in shaping policy when they are armed with specific research information’ (pp. 467–8). However, involving older people in research simply on the basis of their direct experience may not always be appropriate or feasible [17].

Clarify roles and determine levels of involvement

As noted by participants in Workshop 2, older people can play many different roles in the research process, and determining the appropriate level of involvement may be contentious. Nevertheless, it is essential that they are provided with clear information on what they can expect from the research process. This paper has already provided examples of community members being involved at the funding review stage [14], as research participants [15] and as peer interviewers [6]. Prager [18] reports on the next level of research involvement, where older people were trained in research skills and were ultimately successful in obtaining external grant funding to continue their research.

Other ways to engage and involve the older community in research were suggested in Workshop 1. These included: formal and informal consultation; an opt-in process such as through a research registry; as well as through the iterative provision of feedback to participants. However, as one of the service providers suggested at Workshop 3, the involvement of a few older people just for the sake of it is tokenistic and should be avoided [see, also 8].

Communicate effectively

Clear communication between researchers and other stakeholders, including older people, is essential if research outcomes are to be achieved. At Workshop 1, the need for appropriate terminology was raised. Suggestions for appropriate terms included participants, citizens, consumers, stakeholders, partners or advisors. The general understanding was that ‘older people’ is the agreed term in Australia and should be used by researchers in preference to terms such as the elderly or old people. Furthermore, researchers should be age sensitive and avoid terms with negative connotations.

As noted by participants in Workshop 2, information should also be jargon-free to facilitate understanding. Although this principally referred to research terminology, participants also suggested that service providers and community groups should also avoid jargon and reference to local knowledge of which researchers may be unaware. Furthermore, modes of communication need to be appropriate, particularly in relation to electronic mail, as well as care being taken to ensure inclusion of those from non-English-speaking backgrounds.

There was general agreement that clear communication between partners is essential if research outcomes are to be achieved, with even complex research processes being able to be presented in a way that they can be readily understood by non-researchers. The Benevolent Society, in collaboration with the Social Policy Research Centre at the University of New South Wales, is taking the lead in this area and is developing a series of Research into Practice Briefing Papers which will translate research findings into easily understandable language with clear pointers towards good practice.

Recognise different expectations

For researchers and others to work together in partnership, mutual understanding and acknowledgement of different perspectives is required. However, there should also be an understanding of the diverse attributes brought by all partners in the research process. A key area of difference may relate to the priorities and timelines of the research process, as discussed in Workshop 2, where it was acknowledged that research proposals are often under consideration for 6 months or more, and once funded, may take several years to implement and even longer to analyse and publish findings. This can be a source of frustration for community members or policy-makers who are seeking quick results. However, this form of research is more likely to be methodologically sound and generate worthwhile outcomes. Clearly, some sort of balance and communication is required.

A presentation at Workshop 3 highlighted the benefits that can come from partnering with key agencies, including greater access to staff and clients, but how in return, the research must be relevant to the needs of the organisation. These needs and priorities may in turn differ from those of university researchers, who are reliant on grant funding and publication in high impact, international journals for career advancement. As a result, local and national impact through the translation research may be less highly valued within the university environment and by the research funding bodies. These differences in expectations must be recognised.

Active research partnerships with industry groups can have positive results in improved dissemination and translation of findings for the broader community, as they can help bring presentation and marketing skills that the research team may lack. Websites, bulletins and publications from these organisations can assist with active dissemination of the outcomes from research. Results can also be broadly disseminated via options such as Ageing Research Online (http://www.aro.gov.au) or the Australian Policy Online (http://www.apo.org.au) or through the stakeholders’ own dissemination procedures.

Recognise difference

Any differences between stakeholders need to be acknowledged throughout the research process. This is not easy and takes a willingness by all stakeholders to accept the legitimacy of each other's views, values, objectives and skills [19]. In general, it is important that researchers avoid age-related stereotypes and assumptions, and ensure that processes are ethical and non-ageist. As noted by a member of a seniors’ organisation at Workshop 1, seniors were often frustrated with being asked to participate in research that appeared repetitive, inappropriate, misleading or patronising.

In the literature, a number of authors suggest that differences between researchers and other stakeholders can result in important power differences [4,8]. As Dewar [8] suggests, there is a need to explore the concept of equal but different partners, which includes methods that challenge power relations within the research process. This concept of equal but different underpinned much of the discussion at the three workshops during the process of developing these guidelines.

Ensure representativeness and diversity

Good research studies in ageing are needed that explore the breadth and diversity of the ageing population. It is important that a narrow, stereotypical view of older people is avoided, and that research includes areas of diversity such as health, attitudes, capacity, socioeconomic status, cultural background and so on. As discussed at Workshop 2, it is important to avoid any assumptions that older people are necessarily frail or disabled. There are a wide range of capacities within any age range and any such assumptions are ageist. This point is also raised in the literature. Quine and Browning [11], for example, suggest that the exclusion of older people from the research process may be largely driven by the attitudes and practices of researchers and institutions, reflecting broader negative social perceptions about ageing and older people [see 7, 8 for similar points].

However, comments at Workshop 1 also indicated that while older people may be experts on specific areas of their life experience, their experience is socially and culturally determined and may lack breadth. The experiences of one individual or even one group may not be common to everyone and even organised interest groups may not fully reflect the views of their constituents [1]. It is the role of researchers to represent many different viewpoints. Yet, as Ross et al. [20] suggest, there is no single blueprint for involvement as research involves working with a diversity of perspectives.

Concluding summary

There is increased recognition that involving the research participants in the research process can lead to increased benefits for all involved. There is also a strong case for the need for specific guidelines for the involvement of older people in research. This paper outlines of the process of developing these guidelines that are built upon a series of workshops sponsored by the ARC/NHMRC Research Network in Ageing Well. The guidelines put forward the following six principles: (i) acknowledge research as a process; (ii) clarify roles and determine levels of involvement; (iii) communicate effectively; (iv) recognise different expectations; (v) recognise difference; and (vi) ensure representativeness and diversity.

These guidelines are now being promoted through the ARC/NHMRC Research Network in Ageing Well and through the collaborating stakeholder organisations who will be working together to implement these principles in future research involving older people.

Acknowledgements

The preparation of this paper, and of the guiding framework to which it refers, was supported by the ARC/NHMRC Research Network in Ageing Well. The authors wish to acknowledge the contribution of the following collaborating organisations and representatives who worked with us to develop the framework: Peter Matwijiw and Peter Brady (National Seniors Australia); Anna Conn (Alzheimer's Australia); Jane Fisher (Council on the Ageing); Joan Hughes (Carers Australia); and Barbara Squires (The Benevolent Society). Thanks are also due to Susan Dann, former Head of Research, National Seniors Productive Ageing Centre, for undertaking the preliminary work on developing these guidelines. We wish to thank all other participants in the series of collaborative workshops which informed this process.

Key Points

  • • Population ageing has become a priority area for governments and there is a need for good quality, multidisciplinary research that can be used to inform ageing policy and practice.
  • • There is increased recognition that involving older people in the research process can lead to increased benefits for all involved.
  • • This paper outlines the development of a guiding framework for both researchers and community organisations seeking to involve older people in research, the first of its kind in Australia or internationally.
  • • These guidelines are now being promoted through the ARC/NHMRC Research Network in Ageing Well and through the collaborating stakeholder organisations who will be working together to implement these principles in future research involving older people.

Ancillary