Grey Matters

Front matter

SREY MATTERS

A GUIDE TO COLLABORATIVE RESEARCH WITH SENIORS

IMT PTF

Contents

Acknowledgments The Kerby Centre of Excellence Prologue: Seniors’ Collaborative Research Manual

SECTION 1: The Reason for the Book. How It Came to Be 1. Make Room for Seniors: Research with, for, and by Aging Adults 2. Resilience and Seniors: What We Did and What We Learned about Doing Research

SECTION 2: Research Methods Manual

SECTION 3: Conducting Inquiries and Research

7. READY: Setting the Agenda for Your Research 8. SET: Creating Your Research Proposal

9. GO: Conducting Research and Sharing Results Further Readings and Resources

Appendix 1: Resilience as Social Capital: Lessons from Older Adults

Appendix 2: Handout of Basic Principles of PAR

Appendix 3: Sites and Sources: Seniors and Resilience Research Proposal

Appendix 4: Observation Workbook for Field-Work

Appendix 5: Focus Group Training Notes

Appendix 6: An Example of a Structured Workbook Approach to Focus Groups

205 227

231 247 253

Appendix 7: Follow-Up Focus Group to Discuss Rural

Resilience Findings

Appendix 8: Report of the Focus Group Meeting with CJCA

Seniors Club

Appendix 9: Narrative Interview Guide

Appendix 10: Examining Social Problems

Appendix 11: Navigating the “Seven C’s”: Curiosity,

Confirmation, Comparison, Changing, Collaborating, Critiquing, and Combinations

Appendix 12: Elder Self-Neglect: Project Description

Glossary of Terms

List of Figures viii l.

2. 3. 4.

Participatory Action Research processes.

PAR. informed inquiry-based training.

Organizational chart for research.

Sample of photo information with codes: Snowbirds documentary.

Acknowledgments

This project grew from the vision of Pat Allen, founding CEO of the Kerby Centre in Calgary, Alberta, Canada, who developed the Kerby Centre of Excellence (KCE). Pat and two board presidents, Betty Mc- Creight and Sheila Power, attended most of our workshops, training events, planning and evaluation sessions. Their input and guidance kept us on track and convinced us of the importance of the project for seniors.

The retired professors and team leaders were seniors, accomplished researchers, and the bridge between the senior researchers and the principal investigators. Their enthusiasm and wisdom kept the unruly project on target and on time. A special thank you to Dr. Mo Watanabe, Dr. Joan Ryan, Dr. Bob Stebbins, Dr. Ralph Miller, and Dr. Mary Sheridan. They came to help run a day-workshop on resilience and stayed for three years.

The senior researchers showed that, given the opportunity, they could stand with the best. They had to endure while we tried to sort out the processes; they bravely took on new and sometimes frightening roles; and they patiently negotiated with us for their power and gracefully took over the project. Their determination and talent was an inspiration. A special thank you to Anne Hartley, Margaret Harche, Shirley Atkinson, Pauline Gorton, Maureen Wills, Nancy Jensen, Fouad Henin, Noreen Mahoney, Ida Henin, Marilyn Akazawa, Dr. Jenifer Meynell, Winnifred Woodhouse, Geoff Elliott, Grant Allen, Sheila Power, Carroll Jonns, Julia Thorpe, Dr. Herb Breitkreutz, and Valerie Breitkreutz, who were the core of the senior researchers.

Our partner sites were the bedrock of the research. They welcomed us and opened their doors to a new model of negotiated partnerships. They were observed and interviewed and they hosted our focus groups. They encouraged their members to take part in the narrative interviews: Kerby Centre, Confederation Park Senior Citizen Centre, Japanese Canadian Seniors Club, Okotoks Seniors’ Club, Cochrane Family and Community Support Services, and various churches. Through all of this they welcomed challenge and supported the seniors as they grew in their roles as researchers.

After the project was completed, two other sites offered to implement the research methods and these sites are included in this book. The Snowbirds Fellowship in Bragg Creek and their oral history project is highlighted in Chapter 3 and the Ogden House Housing Project is highlighted in Chapter 4. Okotoks Seniors’ Club provides the basis for Chapter 5 and the experiences of the Kerby Centre in starting an Elder Abuse Shelter provides the basis for Chapters 7 and 8.

There are many at the University of Calgary and the Kerby Centre who should receive thanks but special thanks go to Dorothy Dooley, Coordinator of the KCE, who kept the finances on track, the schedules organized, the meals ready, and the reports written. She was always there when senior researchers were discouraged or angry, when the investigators or the university had impossible deadlines, and when the media demanded responses. She holds a vision of the KCE that will move seniors to the forefront of innovation and research.

Marianne Rogerson, the project staff person, brought calm and grace to the daily work of managing files, writing documents, analyzing data, and searching out materials and equipment. She worked with the team leaders, the team coordinators, the principal investigators and the Kerby Centre. Her organization and deep love of participatory research marked all of her interactions.

Finally, thanks to all the families and friends who supported us during the past three years of writing this manual through its various iterations: pamphlets, manual, and finally, a book written with seniors.

This book is dedicated to the memory of Dr.

Joan Ryan, a University of Calgary professor and one of Canada’s pioneers in Participatory Action Research (PAR) with Aboriginal communities. She taught and enforced the principles of senior leadership with all of us. She gave seniors the confidence they needed to try something new and to be researchers with other seniors. Dr. Ryan will be remembered for her down-to-earth manner and her ability to teach through stories. Her passion about PAR kept us all on our toes.

Acknowledgments xi xii

Pat Allen

People do for us and that’s very nice, but that’s not what we need. We need to do for ourselves and be listened to before legislation is enacted. I wanted older people to do their own looking at what they need and to verify it in a way that would be recognized by the community and at a university level.

The Kerby Centre of Excellence

The Kerby Centre of Excellence is a seniors-led organization dedicated to enhancing the ability of seniors to live healthy, creative, and productive lives within their community. Since it was established in 1973, the Centre has grown to become a dynamic, multifaceted organization, offering a wide range of social, recreational, educational, and wellness programs. It is Alberta’s leading multi-service seniors centre, annually serving over 32,000 seniors and their families, more than 30 per cent of Calgary’s senior population.

A social model of health has been developed by the Centre to meet seniors’ intellectual, emotional, social, and physical needs and to improve their quality of life. To many seniors the Kerby Centre represents community. It is where they come for information, learning, advocacy, good meals, tax help, entertainment, socializing, exercise, and help, when needed.

The Kerby Centre of Excellence and Network in Applied Gerontology was established in 2002 to undertake research focusing on all aspects of aging successfully and to involve seniors in identifying and conducting research relevant to them and their peers. The Centre of Excellence is Canada’s first community-based research centre to integrate research, education, and service delivery for seniors.

The goal of the centre is to conduct collaborative, multidisciplinary research into healthy and successful aging. One of the major thrusts will be to understand and promote resilience for seniors and their communities. This research will help to identify what makes seniors resilient, able to bounce back, and remain healthy and active xiii despite lifetime setbacks. The Centre of Excellence has a vision of involving seniors in all aspects of research: for seniors by seniors.

This manual is a product of the centre’s first project titled Seniors and Resilience: Sites and Sources. It was a collaboration between the University of Calgary, the City of Calgary, and the Kerby Centre. It is hoped that this research manual will contribute to future research, programs, education, and services to improve seniors’ quality of life today and in the future.

The funding for the research project was provided by the Canadian Institutes of Health Research, Institute of Aging. The one-year funding lead to a three-year project with other partners that turned the findings of the formal research into this book. We are grateful to them for their vision and willingness to start the process to a future where seniors are partners in setting the research agendas and are recognized as researchers in their own right.

xiv GREY MATTERS

Prologue: Seniors’ Collaborative Research Manual

This manual represents a major step in making collaboration between seniors, academic researchers, and community researchers a reality. It is of interest to:

Aging adults who are interested in research and would like to understand research in their reading and everyday lives.

e Individuals who have a specific project they would like to undertake.

Groups of aging adults who would like to engage in research as independent researchers doing their own projects such as collecting oral histories or conducting needs surveys.

e Researchers who would like to hire seniors as part of their research team.

e Researchers who are interested in forming collaborative partnerships in applying for research grants and conducting ongoing research projects.

XV

Policy makers and planners who are concerned about hearing the authentic voice of seniors, as part of a planning process.

e Teachers in Gerontology and Aging Studies who are looking to train students in research methods appropriate to their field of study.

We began with an investigation into the methods best suited to collaborative, seniors-led research. We looked at four primary research categories: field-work, interviews and survey questionnaires, focus groups, and narrative interviews. All proved to be acceptable to seniors and appropriate for collaborative research. We asked seniors why they wanted to conduct research and where the research done by seniors might lead. We investigated how to train seniors to do research in an inquiry model that included formal training, mentoring, learning by doing, and reflecting. The results of this work far exceeded our initial expectations. Aging adults are capable and motivated. They have first-hand knowledge of the cultures of aging and their creativity will introduce new approaches to understanding emerging social problems.

We use the terms “seniors,” “aging adults,” and “elders” interchangeably, although our group preferred to use the term “seniors,” despite the politically correct language of “aging adults.” In general, we use the term “seniors” to denote our senior researchers and “older adults” to refer more generally to the sector of the population being studied.

The manual uses a mixture of lay and academic language. We have attempted to use technical terms sparingly and define these within the text. There is a glossary that provides a quick reference to technical words. We chose not to include formal references; however,

99 ce xvi GREY MATTERS lists of good resources are to be found at the end of each chapter. The majority of these are available either online or at a local university.

Section 1 provides the rationale and background for the book. Chapter 1 introduces the need for aging adults to be involved in research about seniors and what we have learned about the principles and practices of doing research in partnership. It is a useful guide for discussions among seniors, researchers, research funders, and policymakers as they explore the importance of collaboration. We hope that this chapter will encourage academic researchers to forge new alliances and prompt research funding bodies and policy analysts to increase their expectations of collaboration in funding criteria.

Chapter 2 is the story of our research project with goals, processes, and evaluations.

Section 2 is a research manual; Chapter 3 considers Field-work and Participant Research; Chapter 4, Surveys and Interviews; Chapter 5, Focus Group Research, and Chapter 6, Narrative Research. Each chapter includes sections on: when to use the method, recruitment, and the relevant ethical issues to be considered; research roles; how to collect and analyze data; and, some hints about training seniors for that particular type of research. In some cases we challenge existing research practices or design new approaches based on the feedback of our senior researchers. In each chapter we consider a research project done by seniors as the example: the Elder Abuse Project at the Kerby Centre; the Snowbirds Seniors Fellowship of Bragg Creek; the Okotoks Seniors Club; and the Ogden House Seniors Housing project.

Section 3 discusses how to create, implement, and share research in a partnership. Chapter 7 begins as a brief overview of the stages and steps of designing research, and what we have learned as the materials in the manual have been used by others. There are four major steps in Chapter 7, which begins with deciding on a research question and focusing your efforts.

Prologue xvii

Chapter 8 outlines the steps to developing a funding proposal. Chapter 9 then continues with conducting and evaluating research, sharing results, and taking action. The appendices include an article on resilience and older adults, a handout on the principles of PAR, an example of a research proposal, a template for recording the activities and observations, focus group workbooks, a narrative workbook, a narrative interview guide, a workbook for rural settings, and a glossary of terms.

xviii GREY MATTERS

Section 1 The Reason for the Book

How It Came to Be

The first two chapters discuss why, on the brink of an increase in the numbers of aging adults, it is important to prepare seniors to take on research roles.

Chapter 1 outlines the potential and essential roles seniors can play in creating new options in policy and services. It focuses on the importance of capturing the voice of seniors and how they contribute in ways that only a long life of experience can offer. It concludes by introducing the research approach that we adopted for our seniors’- led research project, Participatory Action Research (PAR).

Chapter 2 describes how a large group of seniors took on the challenge of becoming researchers and how to adapt research methods for seniors. It outlines four different methods that could be used in a participatory research project: field-work or observational research, interviews and questionnaires, focus groups, and narrative methods. It concludes with a discussion on evaluation of the research process.

Sheila Power

The seniors involved wanted their children and grandchildren to understand what resilience meant so they could be resilient themselves.

Make Room for Seniors: Research with, for, and by Aging Adults

Do you ever get angry when you read in the newspaper about yet another study that talks about the problems of being old? (BM, 2006)

Not another focus group! They always ask us to come and give our ideas and then they pack up their flip charts and go home. We never hear from them again.(PA, 2004)

To older adults, it becomes frustrating when the only research news about seniors is negative. When seniors have been asked for their ideas, their ideas seem to be taken and used by others with little credit or recognition. Many aging adults have been involved with focus groups and know about research through this experience. While they appreciate the chance to get together and talk about issues, they feel used and ignored when the sessions lead nowhere. One said, “being involved after the research has been designed is like being invited to comment on the menu after the meal has been prepared.”

And yet, things don’t have to be negative, there is another way. I always thought that if the professor said it was “this” way, it was. Now with us working together, I know there are options and appreciate being listened to. There can be more meaningful science when we build on personal trust. (JL, 2006)

A. Historical Approaches to Research about Seniors

Research is a systematic inquiry into a topic, or a method of checking information. Research is about being thoughtful and careful in asking and answering questions so that you have some confidence in what you discover and share with others. Research comes in many sizes and styles, from massive projects such as the census for Statistics Canada to a gardener researching the best soil for her prized roses. Each type of research has its own methods of inquiring and making sense of information gathered. These methods are tools that anyone can learn about and use to solve problems or explore something you care about.

There are two established traditions in research about aging. One looks at problems of aging, and, the other, ways to fix the problems of aging.

The first tradition sees aging as a biological decline to be slowed or reversed. The researchers generally work at a university in a faculty of medicine or science. People working in health research are often called geriatric researchers. Geriatrics is a branch of medicine that deals with the diagnosis and treatment of diseases and problems specific to the aged. This type of research is recognized by the public and is well funded. Seniorsfrom the perspective of Geriatrics are considered to be losing health and competence.

For example, if research in this tradition were to investigate resilience, it might look for resilience genes, or how people who are resilient are different from those who are not according to some characteristic like adrenal functioning, health status, or depression.

Medical research is generally quantitative in that researchers pose questions that turn events and characteristics into numbers so that information can be subjected to statistical analysis. The methods used are generally experimental in nature. The researcher sets out to see what happens when a condition or situation is repeated in controlled situations to assess the impact. The most widely understood method is the controlled trials method used in testing an intervention, be that a drug or treatment. Here the people who are receiving the intervention do not know what they are receiving and the people who are conducting the study do not know either. This is called a double blind (both parties don’t know) study and is considered the standard to ensure that the drug or intervention is indeed having an effect. It controls the expectation or hope that something may be helping. There are common statistical standards (tables of numbers representing the possibility of an event occurring by chance) that are used by all scientists to judge their work.

Your input in this type of research might be requested in pre-testing the language and structure of questionnaires, administering the questionnaires to other seniors, and looking at the implications of the results. You would likely not have a role in deciding the research questions or interpreting the results since this is the researcher’s responsibility as part of ongoing scientific studies.

The other research tradition is not about aging per se but about “‘fixing the problems of aging” and tends to be found mostly in professions such as social work, nursing, rehabilitation, psychology, and sociology. Gerontology is the scientific study of the biological, psychological, and social (the bio-psycho-social) phenomena associated with old age and aging. A wide range of professions bring their disciplinary skills to look at the life experiences of those who are aging so that professionals and policy-makers can be more effective in providing services. For example, the Calgary Health Region is developing a questionnaire to measure resilience so that they can identify people who are not resilient in order to offer programs to help them.

Gerontology research may use the experimental methods outlined above but are more likely to use qualitative methods, which take a more natural look at what, how, when, and where things happen. This type of research uses words to tease out meanings, concepts, definitions, characteristics, and descriptions of events and ideas. It uses methods such as observing, interviewing, documenting, and collecting objects in natural and unobtrusive ways. More recently, this type of analysis is aided by computer analysis, which organizes information, looks for patterns, and calculates the number of times that ideas occur together.

You might be invited to take part in this type of research by working to define problems and needs, to provide input into where best to study the problems, who to contact, how to do the research, and you may be invited to collect information and help with the analysis and interpretation.

A new perspective or third way of doing research looks at aging, not as a problem, but as a culture and opportunity. While there is not a readily accepted term for this type of research, the concept is taking shape within Aging Studies, an emerging field of study related to healthy aging. Here the focus shifts to the cultures of aging (history, values, beliefs, language, media) and the politics of aging. In many ways this new area is like Women’s Studies and Disability Studies, although the academic roles of seniors have yet to be widely accepted in universities.

This research is closest to the interests of most seniors. It clearly states that aging is not an illness or disability nor is it a problem. Aging happens to every one and, like any other stage of life, becoming older has advantages as well as challenges. Aging studies would place the “problem” not with individuals but with society that tends to use age as an excuse to marginalize older people because they are seen as being less productive once they reach “a certain age.” With the loss of status and place in their communities, seniors often lose connections, struggle on fixed incomes, and become overwhelmed with the illnesses of idleness.

For example, when seniors set the research agenda for resilience, they looked at resilience as a legacy that seniors had worked hard to learn and accumulate and as such resilience is a resource for future generations. From a seniors-led perspective, they did not want to research the loss of resilience as a biological function nor as a service problem, they wanted to understand how they were recruited into being resilient in childhood and how they could make sure that their grandchildren became resilient (Appendix 1).

The methods used in this type of research look to the relationships between groups of aging adults within the broad segments of society, why decisions are made, how to impact stigma and policy, how seniors can help each other avoid being marginalized and made dependent. Many methods can be used but methods such as focus groups, interviewing, collecting, and documenting seem most common.

In this research seniors are more likely to lead the research, identify an issue that needs to be addressed, attract other seniors and researchers, and set the agenda. They would be partners in deciding on the methods and analyzing the data. They would present results to other seniors, professionals, and academics and take action based on what has been found. It is research about seniors, by seniors, and for seniors.

B. Research about Seniors and Research by Seniors

This section begins with a vignette that illustrates the differences between research done by a professional about seniors and research done by seniors about seniors. It is an attempt to clarify some of the issues that arise when research about seniors does not include them and what can happen when seniors attempt to do research without having research training.

A young male cancer doctor decides to conduct research on older women with cervical cancer because he is considering hiring a social worker to provide more holistic service to his older patients. In his office he interviews older women who have had cervical cancer, using a standardized questionnaire on body image and cancer. Based on the responses he received he concludes that the women being studied are ill-informed about their bodies and seem not to care about the impact of the treatment.

The same research topic is taken up by three older women who are part of a self-help cancer support group when they became interested in some of their shared ideas about their bodies and the impact that their ideas about their bodies had on their relationships. During a series of support meetings, the three women observed and raised questions about the treatment of cervical cancer. They took careful notes and shared these with the women in the support group. They came to a consensus about their shared findings and wrote about their shared deep feelings of violation, shame, and embarrassment that interfered with intimacy. They also wrote about how to overcome these feelings and how to move to a healing process. They then wrote an article in a newsletter about their findings to share with women in other support groups.

The young doctor wrote a review of their article and claimed that, based on his research, their findings were biased and not valid because they did not use proper research methods.

The above example describes two approaches to doing research, one from a professional or problem base and the other from an aging studies perspective by seniors. The topic of the research in both cases was personal and body image related to cervical cancer in older women and the impact of cancer on relationships.

This short example puts forth the value and potential of collaborative research. It identifies some of the barriers that may face professionals and academics working with seniors. It also highlights some of the conflicts that seniors may face.

e What would be the result if seniors were trained to conduct research so the results were taken seriously by professionals?

What would happen if the young doctor worked with seniors in designing and carrying out research?

The women who took on the responsibility of collecting ideas as part of the support group represent the audience for this manual; seniors who are drawn to know more about how and why things are the way they are. They are also clearly working within an Aging Studies understanding of culture and a qualitative research tradition. They were interested in research as “insiders,” working from within the group. As such they were trusted to represent the ideas of the group. They did not have their own agenda but noticed and recorded ideas that arose from general conversation in the group. They were then able to bring the recorded ideas back to the group for clarification and consensus. As the concerns were identified, it was a natural next step to think about how to overcome the negative feelings that they shared and understood.

They were using research to understand their personal and shared experiences and used that learning to take action to improve their lives (Chapter 1). They could have used observation techniques (Chapter 3) and focus group methods to clarify their ideas (Chapter 5) so that their wisdom would have been considered knowledge and their efforts would have fostered action to change the way that cervical cancer is managed.

The young male doctor, on the other hand, was an outsider because of his age, his gender, and his position of power and authority. He was trusted to be a caring and interested professional but not someone you would naturally share feelings and personal experiences with. The answers to the questions in the questionnaire were influenced by his power position and the women’s uncertainty as to why he was asking the questions.

His use of a standardized body image questionnaire gave him a feeling of security that he was doing research that would be accepted by his peers and that he would be able to relate his findings to a theory of body image and cancer. What he lacked was a bridge to the older women he chose to interview to ensure that they felt safe in sharing their feelings.

Had he been alert to the potential of doing research in partnership, he could have pre-tested his design with a focus group (Chapter 5), he could have trained older women to administer the questionnaire (Chapter 4), and he could have discussed the results with these women to help make the interpretations meaningful to other women with cancer.

C. Why Should Seniors Get Involved in Research?

In one of our sessions we were reviewing an unpublished article (Resilience as Social Capital, Appendix 1) that had been written about our resilience project and we were talking about how important seniors’ ideas looked when they represented many people’s experience. We came up with the following way of capturing what this meant to us:

Experience shared, builds togetherness and confidence. Experience researched, creates knowledge and action.

The following ideas came from our discussions over a three-year period as we discussed why seniors might want to get involved in research and where their involvement might lead research about aging.

Capture the wisdom of seniors. Research provides a way to make the knowledge/shared experiences of seniors available to other seniors and those they want to impact — the general public, service providers, academics, and politicians. Unfortunately seniors’ experience and wisdom has often been overlooked. Through this manual we are looking at ways to transform shared experiences into public knowledge and action.

Make a difference. Most seniors care about the things that affect their lives, families, and communities. They worry about issues that affect everyone: health, housing, environmental warming, family histories, violence, and economics. When older adults know how to evaluate research and conduct their own research, they are more likely to change the conditions they care about. To own accurate and revealing information and research is to have power and to make a difference.

Document the cultures of aging. There are many distinct groupings or cultures within “the Senior Years” — master athletes, church helpers, veterans — and most are hidden, not valued or misunderstood. What people know about seniors is often limited to caricatures in the media and movies and the hero/horror family stories of older relatives.

When the richness and diversity of aging becomes public knowledge, society will be less likely to see all seniors as the same or to propose one solution for all circumstances.

Influence research agendas. The larger research community needs stronger seniors’ voices to bring a practical and positive reality to the dominant problem-focused academic and professional debates. While the questions asked by seniors may prove uncomfortable, their ideas about what research needs to be done and how to do it will broaden research perspectives and options.

Seniors need to sit with researchers as they conceive proposals, to be present at the table when funding choices are made, and, to be in the trenches, working alongside academic and professional researchers. They need to be the “knowledge translators” for other seniors.