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Principles for Collaboration and Partnership between Elderly Consumers of Medication and H

This page was reviewed or revised on Friday, October 23, 2009 4:36 PM

OR "Talking Turkey"

By Joseph A. Tindale, Ph.D.

Some of the remarks made in this address are based on data collected with the assistance of Seniors Independence Program, Health Canada grant #4687-06-93/456.


Introduction

This has been a day where you have been engaged in your own version of what I think of as Open Space planning or a Search Conference. People begin by scanning the environment to see if they can agree on what is out there. If they can identify some common issues, then the next step is to try to come up with ideal solutions. From there, the trick is to work backwards the minimum distance possible to find workable solutions (Tindale, 1993).

Open Space events and Search Conferences are used when the participants come from diverse backgrounds and especially when their interests are diverse. Well, on the one hand, we have older persons here who are consumers of medication. That is all that homogenizes the elderly consumers. In every other respect, you may be and probably are, quite diverse. On the other hand, we have health care professionals who are part of today's assembly. And yes, that is probably all that is common among you. The health care workers here are just as diverse as are the senior consumers.

What do you want to leave this conference with tomorrow? My working assumption this evening is that you want some strategies to improve every conceivable dimension of the seniors' medication issue as YOU have defined it today.

This evening my first assumption was that you are a very diverse lot. My second assumption was that you want to bridge that diversity to construct a community of collaborative action around the issues associated with safe medication by and for older persons. In short, you're tired of talking at each other, its time to talk turkey, time to fish or cut bait, time to go big or go home: time to get something done. The Lambton Seniors' Association asked me to draw on my experience and think about some constructive principles about this process.


Collaboration

Some colleagues have done some research that suggests many attempts to create collaborations between researchers and those who provide service in community agencies have been less than fully successful (Norris, Davey & Kuiack, 1994). However, they have tried it nonetheless and found the collaboration to have been partially successful (Norris, Davey, Davey and Weiler, under review). In that case the researchers were brought in from the outside by the funders to collaborate with program providers to evaluate an existing program.

Almost three years ago a somewhat difference collaboration was initiated when I formed a writing partnership with Susan Hardie. Now an advocate working for the provincial Advocacy Commission, she was then working to build community networks among persons with personal experience of the mental health system. Susan and I wrote a paper exploring issues associated with combining community development projects and research to evaluate their outcomes (Tindale & Hardie, 1994). A year and a half ago she and I were funded to see if we could put our money where our mouths had been. In fact Susan Hardie, who was then the coordinator for the National Network for Mental Health (NNMH), myself from the University of Guelph, and the national office of the Canadian Mental Health Association (CMHA) created a partnership to steer our Community Networking project. The NNMH is a non-profit, voluntary organization of people with direct personal experience with the mental health system. All participating local networks are grassroots organizations.

The CMHA is a national voluntary association that exists to promote the mental health of all people.

And I am a teacher/researcher in the Department of Family Studies at the University of Guelph.

Over the past year we worked to build a network of older persons with experience in the mental health system. These consumer/survivors worked with other seniors who had not experienced particular mental health difficulties and with project staff. Project staff were younger, some had personal experience with the mental health system and some had not. It took us a full year but we now have a functioning network that is member driven (Adlam, T., Birch, P., Tindale, J. & Hardie, S. (1995). We are presently seeking continued funding to continue our facilitation for one more year (Tindale, 1995). At that time I fully expect my position to have become largely redundant.

Throughout the last year we worked to forge partnerships and networks among:

  • ourselves as project staff;
  • the seniors we gradually made contact with in the community and in one long term care facility;
  • health and social service providers so that they could act as resources for the senior's group;
  • and between the seniors and the providers.
     


In the early days project staff had a couple of clumsy names for our projects. We eventually settled on Community Networking. Once the seniors' network was established they promptly demonstrated ownership and direction by renaming the network: Paddle Your Own Canoe (PYOC).

The experiences of PYOC members are both very different from mine and very similar. The diversity among us has made the similarities all the more stark in their importance. As I worked with the members of PYOC, and asked them what issues they wanted to address first, I began to appreciate what they value most, and some of the places they look for support.

  • They value comradeship, to fight isolation and loneliness.
  • They value mutual respect, to fight dismissive treatment they have on occasion experienced at the hands of some service providers and some seniors they describe as the "healthy and wealthy".
  • Beyond finding support from their peers in PYOC, they look to project staff to help them find some continued funding so they can put some of their ideas into practice.


PYOC members are putting these values to work in using space donated in a century old home that is a former church rectory. They are planning a community barbecue for their fledgling community and they are on my case to try and nail down the funding so they will have a year to stabilize the network that got under way finally in March of this year.
Part of me takes the value of respect for granted. Another part of me knows only too well how it feels when those around you do not respect you for who you are, do not understand or care where you are coming from and thus, do not care where you want to go.

I got an opportunity to learn more about the values of those who have experience with the mental health system a few weeks ago at a two day meeting I participated in called The 2nd Psychiatric Roundtable. It was a meeting sponsored by the NNMH and by the Canadian Psychiatric Association. Numbers were controlled at this national meeting by inviting representatives from consumer/survivor groups, psychiatrists, relevant federal and provincial government groups and professionals other than psychiatrists working in the mental health field.

I know, I am "none of the above". I was fortunate to be invited by the NNMH to share some of my experiences of the PYOC group. Psychiatrists and what we once referred to as their patients, later termed clients and now known as consumer/survivors have had a rather rocky history together. They are quite different from each other in terms of personal experience and their power relative to each other. In coming together both groups felt vulnerable in various ways. Undoubtedly however, it was the consumer/survivors who, in expressing what they valued and what they wanted, had to most to lose. In those two days I learned a lot about principles for action when consumers and providers form partnerships to get something done.

When those principles are valued, we come much closer to a partnership where we no longer talk about discussions between groups. We can then talk about action taken by coalitions forged by diverse groups who share the same values and objectives.


The need for collaborative action

The Psychiatric Roundtable was a wonderful learning experience for me. I think there are parallels that can help to inform your discussions as you work towards action plans to foster safe medication use by seniors. Thqse insights are premised on the notion that seniors, as consumers, not only know something about safe medication use, they live with the consequences everyday and without them and their experience, many of we professionals who work in the "aging enterprise" (Estes, 1980) would be out of a job. Despite this centrality of seniors' experience they often enter into government policy consultations at a power disadvantage. This disadvantage derives from the fact that the elderly are consumers and the professions are providers. If we are to truly create partnerships then we must recognize this differential in power and neutralize it by constructing a shared viewpoint on values, objectives and plans for action.

And so it is for these reasons that I put before you some of the values and principles for shared action that psychiatric consumers laid out as the necessary preconditions for partnership with psychiatric professionals. This does not make it an adversarial relationship. Indeed, it recognizes tensions rooted in experience that must be faced. The consumers want very much to work with the professionals, they are simply serving notice however, that they will only do so as equal partners.


Values for collaborative action

 These are Possible values for collaborative actionr They are not in any particular order. Which can you embrace? Which would you revise? Which do not belong?


Values

  • Respectful
  • Accountable
  • Accessible
  • Culturally Sensitive (Racially/Ethnically/Linguistically)
  • Economically Sensitive (Poverty)
  • Socially Sensitive (Prejudice/Discrimination)
  • Comprehensive
  • Coordinated
  • Gender Sensitive
  • Effective
  • Responsive
  • Collaborative
  • Integrated with community
  • Oriented to coping and recovery
  • Committed to choice, self-direction and empowerment
  • Use of latest knowledge
  • Use peers as service providers (Carling, 1995)


These values are presented as food for thought. The challenge is to think why they are, OR are not, relevant for your experience. Most of these were presented to the Psychiatric Roundtable conference in the same way I have by Paul Carling (1995) a facilitator from the University of Vermont. His list did not include CONTINUOUSLY AVAILABLE, or GENDER SENSITIVE. Adding them were the revisions we made to his list.

 
A consumer perspective on consumer/professional partnerships

In addition to Carling's nrovocative list of values we need to consider, I was also struck by a presentation made by Jane Whyte (1995). She is, by her own definition, a writer/consumer/survivor. And she spoke about how consumers enter into potential partnerships for joint action with professionals. Based on her remarks I have constructed these principles for partnership:


Principles for Partnership

  • Seniors' right to choose whether to medicate
  • The right to support for choices
  • Responsibility for the consequences of these choices
  • To be identified by name and not condition
  • Professionals have their associations with policy positions well established while
  • Consumers of medication are ultimately individuals
  • Partnerships must be mutually beneficial
  • Avoid consultation without being heard
  • If you're an "expert" you deserve to be paid
  • If you speak up at a public meeting, you should be taken seriously
  • "Quality of life" comes before "quality of care"
  • Avoid talking about the least intrusive while funding the most intrusive
  • Consultation with seniors is only the beginning
  • Seniors must be there for the planning, delivery and evaluation of programs.
  • (Whyte, 1995)

 
Conclusions

I think the bottom line value, and the one on which all principles for action depend, is Mutual Respect. Respect that is willing to be there when the rubber meets the road, lies at the heart of what has to be there for partnerships to work.

If there is respect for you as seniors who consume medication, Then action will result:

  • you will be heard
  • you will be part of the solution and not part of the problem
  • "quality of life" will prevail over "quality of care".


References

Adlam, T., Birch, P., Tindale, J. & Hardie, S. (1995)
Community Networking. Paper presentation to OSCAR conference, Stratford, Ontario, March.

Carling, P. (1995). The changing perspectives of the mental health system.
Presentation to the 2nd Psychiatric Roundtable, Ottawa, April.

Estes, C.L. (1980). The aging enterprise: A critical examination of social policies and services for the aged. San Francisco: Jossey-Bass.

Norris, J.E., Davey, A. & Kuiack, S. (1994). Evaluating self-help and mutual aid programs for older Canadians. In G man, G.M. & Wister, A.V. (Eds.) Health promotion for older Canadians: Knowledge gaps and research needs. Vancouver: Gerontology Research Centre, Simon Fraser University, 57-76.

Norris, J.E., Davey, A., Davey, S. & Weiler, J. (under review). Healthy alternatives/Health choices: Considering the usefulness of a support group for caregivers.

Tindale, J. (1995) A preliminary proposal to Seniors Independence Program: Health Canada. April.

Tindale, J. & Hardie, S. (1994). Health promotion among older persons with direct and personal experience of the mental health system. In Gutman, G.M. & Wister, A.V. (Eds.) Health promotion for older Canadians: Knowledge gaps and research needs. Vancouver: Gerontology Research Centre, Simon Fraser University, 43-56.

Whyte, J. (1995). Report on NNMH founding conference: UNITED WE STAND.Presentation to the 2nd Psychiatric Roundtable, Ottawa, April.

Joseph A. Tindale, Ph.D.
Associate Professor
Department of Family Studies
Guelph, Ontario
N1G 2W1
JTindale@facs.uoguelph.ca
Phone: 519-824-4120, ext. 3796
fax: 519-766-0691